To My Mom who didn't come along until I was 17 (I was the easiest labor ever). Thank you for loving me when it would have been just as easy not to.
CONVERSATIONS ABOUT INTER-ABLED ROMANCE, part 5
9 years ago
Sunday, May 8, 2011
Happy Mothers Day
To those who have mothered me when I needed it. To those who have stepped in when my Mom couldn't be there. To those who have inspired me to be the Mom that I am. I say thank you for loving me and for guiding me.
To My Mom who didn't come along until I was 17 (I was the easiest labor ever). Thank you for loving me when it would have been just as easy not to.
I am incredibly fortunate to remember the instant I knew I was loved. Most of us grow up not remembering that because we were babies, I remember it clearly. I have learned from my Mom that mothering isn't just something that happens - it is a choice and I am so thankful she chose me. I could go one forever about how great she is but I have learned that sometimes more is less. Besides, love cannot be bottled and labeled - it is the lifeforce that flows through us all and makes life worth living.
To My Mom who didn't come along until I was 17 (I was the easiest labor ever). Thank you for loving me when it would have been just as easy not to.
Thursday, May 5, 2011
When to get up and when to lie down
After this last fall, my doctor asked that I take a week off and rest. Due to the fact that I could barely move, it was easy to comply on Saturday and Sunday. By Monday I was itching to get out of bed and by the end of Tuesday I had plans for meetings on Wednesday, Thursday, and Friday. I cannot stay in bed for another day. Puttering for 10 minutes in the kitchen doesn't count nor does doing paperwork (email and letters) for fundraising and other commitments from bed. Being productive means (to me) 'up and about'. I need to be out of bed.
I think that this is a common trap that many who suffer from chronic illnesses fall into: we are sick or have an injury that sets us back, we get stuck in bed, we get depressed, we can't get out of bed and the cycle gets stuck. For me, the act of getting out of bed and out of the house breaks the cycle. I still have crushing pain and emotional wreckage days but being up breaks the cycle of depression and that desire to stay in bed forever because everything hurts and every one's life is going on but mine and waaah waaah pity me. I don't have mercy for pity partiers and am down right brutal on myself if it is my own pity party.
Thus, the question becomes; when do we listen to our doctors and when do we listen to our own body wisdom? It is important to break that cycle of pain - depression - stuck in bed - pain - depression etc. As we have established that getting up and about is a great way to do that, I decided to listen to myself (notice I didn't say my body wisdom) and on Wednesday proceeded to do 5 loads of laundry (which meant 5 trips up and down the stairs) as well as clean the kitchen, practice flute and piano, and drive myself to a doctor appointment. This was a bad idea.
So I am now listening to my body wisdom which says that while it may be depressing to be stuck in bed, your body needs rest so watch or read something funny and get over it. Today will be spent at physical therapy - for which I am going to ask for a ride - and resting. While I don't relish the thought of being "stuck" in bed, I suppose there are worse things.
The moral of the story is that we need to listen to what our bodies are telling us whether we like it or not. Be good to yourselves because no one else can do that for you.
I think that this is a common trap that many who suffer from chronic illnesses fall into: we are sick or have an injury that sets us back, we get stuck in bed, we get depressed, we can't get out of bed and the cycle gets stuck. For me, the act of getting out of bed and out of the house breaks the cycle. I still have crushing pain and emotional wreckage days but being up breaks the cycle of depression and that desire to stay in bed forever because everything hurts and every one's life is going on but mine and waaah waaah pity me. I don't have mercy for pity partiers and am down right brutal on myself if it is my own pity party.
Thus, the question becomes; when do we listen to our doctors and when do we listen to our own body wisdom? It is important to break that cycle of pain - depression - stuck in bed - pain - depression etc. As we have established that getting up and about is a great way to do that, I decided to listen to myself (notice I didn't say my body wisdom) and on Wednesday proceeded to do 5 loads of laundry (which meant 5 trips up and down the stairs) as well as clean the kitchen, practice flute and piano, and drive myself to a doctor appointment. This was a bad idea.
So I am now listening to my body wisdom which says that while it may be depressing to be stuck in bed, your body needs rest so watch or read something funny and get over it. Today will be spent at physical therapy - for which I am going to ask for a ride - and resting. While I don't relish the thought of being "stuck" in bed, I suppose there are worse things.
The moral of the story is that we need to listen to what our bodies are telling us whether we like it or not. Be good to yourselves because no one else can do that for you.
Monday, May 2, 2011
Tumble
Took a tumble down the stairs last Thursday and banged up my body as well as slammed my head into the ceramic tile floor. Needless to say, what a day. Had a nice ambulance ride to the hospital where they assured me (after ct scans and numerous x-rays) that everything was fine. However, they kept me over night to be on the safe side.
I am okay but am really hurting and am now using a walker to get around for a few days. I am in pain but am thankful that no serious damage was done.
I will be back with humor, sarcasm, and plenty of colorful commentary in a few days.
I am okay but am really hurting and am now using a walker to get around for a few days. I am in pain but am thankful that no serious damage was done.
I will be back with humor, sarcasm, and plenty of colorful commentary in a few days.
Wednesday, April 27, 2011
Laughter IS the Best Medicine
During the last few weeks, I frequently asked my friend Katie to tell me jokes. She is the queen of bad jokes - and good ones. For instance, "A white horse fell in a mud puddle." While for some, that would not constitute as high humor, it was just what I needed. She never tired of being put on the spot as I would often just demand "tell me a joke".
I usually lie in bed thinking about the day and analyzing what coping skills worked and what didn't. The one that never fails is humor and sarcasm. I am an incredibly sarcastic person by nature and thankfully, all my friends are too. They get me - gallows humor, political, satire, sarcasm - all of it. I think that Tina Fey and I would be bff's if she would just return my phone calls. Amy Poehler and Jim Gaffigan would also be great friends of mine....if they would just return the phone calls. I haven't hit stalker status yet but if I don't get some response soon, I may have to resort to mass mailings.
I cannot imagine going through everything I do without a sense of humor. My friend's jokes and stories are always enough to break up the thoughts running through my head or give me a diversion to the physical pain and allow me to put everything on the back burner for a few hours until I can gather strength to handle it again. I wish that I could just pop out with sarcastic observations in my blog and have you all laughing out loud and spraying your screens with whatever liquid you are ingesting but I am more of an "observational sarcasm" kind of gal. My children are already honing their sarcastic skills which will either make the teenage years super fun or will turn them into a massive shamble.
While reading jokes is never as good as hearing them (in my opinion) I am going to share my favorite joke that Katie told me from our friend Jim:
An Irish lad comes to America and after going through customs, looks for an Irish bar. He goes in, sits at the bar and orders 3 guinness beers at once. He lines them up and drinks them one at a time. The bartender watches this curiously but doesn't comment. The next week, the Irish lad is back and orders 3 beers at once. He lines them up and drinks them one at a time. Again, the bartender watches but doesn't comment. This goes on for weeks and finally the bartender asks the lad why he orders 3 beers at once. The lad replies, "When I left Ireland I left behind two brothers. Every week we would get together and have a beer. I am continuing the tradition here in their honor." So, the bartender and the lad fall into this ritual easily. One day, the lad says "two beers please". The bartender is saddened thinking that one of the lad's brothers has died. He decides to offer his condolences. "I am so sorry about your brother." "My brother! What do you mean?" "Well, you ordered two beers so I assumed that something had happened to one of your brothers." "No, I gave up drinking for Lent."
May you find the distraction you need to face your day. For me, Phil Hartman will always be one of my favorite distractions. May you enjoy as well.
Monday, April 25, 2011
Trenches
When you are in the emotional or physical trenches, life switches into survival mode. Dusting doesn't get done. Cooking is a necessity that occurs only because you have children. Emails don't get returned promptly - if at all - and work/volunteering falls to the wayside. Every molecule of your body spends it's energy on surviving the current minute. After that minute passes, it does a quick re-evaluation to decide if the next minute is worth living.
I switched into survival mode on March 30th and am just now slowly returning to "normal". It was not pretty for the last while. There were many kleenex involved, words that would make a sailor blush, lots of faking in front of my kids to keep their life generally normal, heart palpitations, and painful memories and emotions that I didn't think I could survive. My friends jumped in and kept me alive. They fed me (literally and spiritually), they gave me shelter, and they never tired of reminding me that I needed to keep going. They went without sleep, took phone calls at all hours, and kept pushing me when I was resisting.
Survival mode is not pretty. My every emotion was raw...as if every nerve ending was just hanging outside of my body and constantly getting bumped sending me into never-ending tailspins of emotional and physical pain. Clinically, I was dealing with post traumatic stress disorder however I think of it as hell. I did all the things one is supposed to do upon an emotional crash - saw my therapist (numerous times), saw my doctor (numerous times), and trusted friends with my deepest emotions but yet all those things didn't fix "it". The problem was bigger than myself, my friends, and my team of professionals. Hurts that occur as children are permanent. They can scab over, they might even scar but there are moments in our life when those hurts become larger than life. The hurt takes over and crushes us at our deepest level.
In these moments, I believe that all one can do is use professional resources, grab onto friends, and buckle in because it is going to be a bumpy ride. Thankfully, I survived the last few weeks and my kids weren't scarred in the process. In general, they were sheltered other than knowing that I was going through some "tough stuff" and they never seemed worried as they knew I was with friends who they trusted.
If I could offer advice to those who have suffered severe childhood abuse and trauma it would be; find a qualified therapist - someone who specializes in childhood trauma and post traumatic stress disorder, share what is going on with your doctor as emotional pain often manifests itself as physical pain, and to share your life story with a few very trusted friends. Don't give up. Call someone at 2 a.m. if you need to. While you will feel guilty for waking a friend, they would rather you wake them then make a permanent bad choice. Go to public places even though you just want to stay in bed under the covers. Getting up, showering, and getting out of the house changes the brain chemistry. (There are studies on this but at the moment, I am too lazy to look them up but if you are interested, email me.)
It is critical that we have safe spaces to deal with the issues. Whether that be a friends home, the hospital or public places these all make you less likely to make bad decisions i.e. you probably won't get smashing drunk at the local coffeehouse nor will you choose to overdose while having dinner at a great deli. Trust me, I have been there and I get it.
I wrote about Redemption last week and am looking forward to "redeeming" myself to my family, my friends, and to myself. I don't believe I did anything wrong to bring about my crash and am proud that I survived (there were some critical moments). When, as adults, we are crushed by childhood trauma and it's memories we can't control our emotions very well - if at all. However, when the crisis abates, we can thank those who held our hands, stayed by our side, and didn't give up when we wanted to. In that, we redeem ourselves, take back control, and begin to live again.
I switched into survival mode on March 30th and am just now slowly returning to "normal". It was not pretty for the last while. There were many kleenex involved, words that would make a sailor blush, lots of faking in front of my kids to keep their life generally normal, heart palpitations, and painful memories and emotions that I didn't think I could survive. My friends jumped in and kept me alive. They fed me (literally and spiritually), they gave me shelter, and they never tired of reminding me that I needed to keep going. They went without sleep, took phone calls at all hours, and kept pushing me when I was resisting.
Survival mode is not pretty. My every emotion was raw...as if every nerve ending was just hanging outside of my body and constantly getting bumped sending me into never-ending tailspins of emotional and physical pain. Clinically, I was dealing with post traumatic stress disorder however I think of it as hell. I did all the things one is supposed to do upon an emotional crash - saw my therapist (numerous times), saw my doctor (numerous times), and trusted friends with my deepest emotions but yet all those things didn't fix "it". The problem was bigger than myself, my friends, and my team of professionals. Hurts that occur as children are permanent. They can scab over, they might even scar but there are moments in our life when those hurts become larger than life. The hurt takes over and crushes us at our deepest level.
In these moments, I believe that all one can do is use professional resources, grab onto friends, and buckle in because it is going to be a bumpy ride. Thankfully, I survived the last few weeks and my kids weren't scarred in the process. In general, they were sheltered other than knowing that I was going through some "tough stuff" and they never seemed worried as they knew I was with friends who they trusted.
If I could offer advice to those who have suffered severe childhood abuse and trauma it would be; find a qualified therapist - someone who specializes in childhood trauma and post traumatic stress disorder, share what is going on with your doctor as emotional pain often manifests itself as physical pain, and to share your life story with a few very trusted friends. Don't give up. Call someone at 2 a.m. if you need to. While you will feel guilty for waking a friend, they would rather you wake them then make a permanent bad choice. Go to public places even though you just want to stay in bed under the covers. Getting up, showering, and getting out of the house changes the brain chemistry. (There are studies on this but at the moment, I am too lazy to look them up but if you are interested, email me.)
It is critical that we have safe spaces to deal with the issues. Whether that be a friends home, the hospital or public places these all make you less likely to make bad decisions i.e. you probably won't get smashing drunk at the local coffeehouse nor will you choose to overdose while having dinner at a great deli. Trust me, I have been there and I get it.
I wrote about Redemption last week and am looking forward to "redeeming" myself to my family, my friends, and to myself. I don't believe I did anything wrong to bring about my crash and am proud that I survived (there were some critical moments). When, as adults, we are crushed by childhood trauma and it's memories we can't control our emotions very well - if at all. However, when the crisis abates, we can thank those who held our hands, stayed by our side, and didn't give up when we wanted to. In that, we redeem ourselves, take back control, and begin to live again.
Wednesday, April 20, 2011
Redemption
The chance to do something differently than we would have before. This is not the Oxford or Webster dictionary definition but mine. A definition that, for me, was formed and made true and revealed over the last few weeks.
We all make ruts in our lives and live within them. There are times we try to get out but usually it is not long before we are back in the same habits and rituals: 4 cups of coffee to start the day when we said we would cut back to one, scanning the front page of the newspaper though we keep saying we are going to read the whole thing (minus the classifieds), purchasing a nice eco-friendly lunch box and then never finding time to make lunch, deciding that the kids need to broaden their vegetable palates and then realizing we just don't have the energy to argue about Brussels sprouts.
For me, redemption is an active choice - a verb if you will - and verbs take energy. At a time when we are all faced with extreme financial, ecological, emotional and sometimes physical stress, we don't have time to bring new verbs into our lives, we don't have time for redemption. However, we expect it out of others: the partner who promises to make more time for the relationship, the boss who stated that they would implement changes we offered, the friend who agreed to exercise with us. Yet, all these people let us down and we are silently angry, disappointed, hurt and are craving their redemption. Desiring, hoping desperately that they will redeem themselves to us.
What has become crystal clear to me during my emotional journey of late is that redemption must come from within before it can be seen in anyone else. It is up to me to redeem myself daily. To chose to make the changes however painful they may be.
Physically, it is excruciating to get up every morning, shower, and get going. Emotionally, it is extremely challenging to refocus my mind and chose to focus on this moment and tomorrow, not allowing my past memories to dictate my days.
The thought of redemption can conjure up images of one who has done wrong and needs to redeem themselves to be worthy of love, affection, respect - even worth. However, I am looking at redemption as a chance to break old habits, get out of my personal ruts and allow my whole spirit to shine forth and guide me - versus my ruts to drag me along.
Abraham Verghese said in his book Cutting for Stone "Life, too, is like that. You live it forward, but understand it backward. It is only when you stop and look to the rear that you see the corpse caught under your wheel."
This resonated loudly for me when I read it today. Without the benefit of introspection and retrospection there would be no need for redemption and without redemption there would be no growth, no forward movement, no chances to make a difference - to do it again better. Redemption is ultimately the flow of life. In every apology, in every decision that we make; the alcoholic that chooses not to take that drink, the parent that doesn't yell at their child but patiently explains for the 50th time the situation at hand, the doctor that instead of grabbing the prescription pad and writing away the problem listens and offers a tender ear.
Each moment that we "redeem" ourselves we grow to love ourselves a little more - to like ourselves a little more, to appreciate the great and complicated human, to realize that there is always hope if we are all working toward redemption. It's in the cars we choose to drive, in the food we choose to purchase from a local farmer, in the way we treat people who are different from ourselves, in the simple acts of offering a please and thank you.
Try living Redemption as a verb for a day. I would be surprised if you didn't sleep a little better at the end of the day.
We all make ruts in our lives and live within them. There are times we try to get out but usually it is not long before we are back in the same habits and rituals: 4 cups of coffee to start the day when we said we would cut back to one, scanning the front page of the newspaper though we keep saying we are going to read the whole thing (minus the classifieds), purchasing a nice eco-friendly lunch box and then never finding time to make lunch, deciding that the kids need to broaden their vegetable palates and then realizing we just don't have the energy to argue about Brussels sprouts.
For me, redemption is an active choice - a verb if you will - and verbs take energy. At a time when we are all faced with extreme financial, ecological, emotional and sometimes physical stress, we don't have time to bring new verbs into our lives, we don't have time for redemption. However, we expect it out of others: the partner who promises to make more time for the relationship, the boss who stated that they would implement changes we offered, the friend who agreed to exercise with us. Yet, all these people let us down and we are silently angry, disappointed, hurt and are craving their redemption. Desiring, hoping desperately that they will redeem themselves to us.
What has become crystal clear to me during my emotional journey of late is that redemption must come from within before it can be seen in anyone else. It is up to me to redeem myself daily. To chose to make the changes however painful they may be.
Physically, it is excruciating to get up every morning, shower, and get going. Emotionally, it is extremely challenging to refocus my mind and chose to focus on this moment and tomorrow, not allowing my past memories to dictate my days.
The thought of redemption can conjure up images of one who has done wrong and needs to redeem themselves to be worthy of love, affection, respect - even worth. However, I am looking at redemption as a chance to break old habits, get out of my personal ruts and allow my whole spirit to shine forth and guide me - versus my ruts to drag me along.
Abraham Verghese said in his book Cutting for Stone "Life, too, is like that. You live it forward, but understand it backward. It is only when you stop and look to the rear that you see the corpse caught under your wheel."
This resonated loudly for me when I read it today. Without the benefit of introspection and retrospection there would be no need for redemption and without redemption there would be no growth, no forward movement, no chances to make a difference - to do it again better. Redemption is ultimately the flow of life. In every apology, in every decision that we make; the alcoholic that chooses not to take that drink, the parent that doesn't yell at their child but patiently explains for the 50th time the situation at hand, the doctor that instead of grabbing the prescription pad and writing away the problem listens and offers a tender ear.
Each moment that we "redeem" ourselves we grow to love ourselves a little more - to like ourselves a little more, to appreciate the great and complicated human, to realize that there is always hope if we are all working toward redemption. It's in the cars we choose to drive, in the food we choose to purchase from a local farmer, in the way we treat people who are different from ourselves, in the simple acts of offering a please and thank you.
Try living Redemption as a verb for a day. I would be surprised if you didn't sleep a little better at the end of the day.
Friday, April 15, 2011
Top 10 Reasons to Love a Chiarian
10. You appreciate any food that wasn't cooked at the hospital.
9. You get to meet lots of doctors.
8. Showing off the scar is a super cool party trick.
7. Tinnitus means that the rock music gets played loudly.
6. Shopping w/ a Chiarian is great because you get to park in the handicapped spot.
5. Memory issues play to the partners/kids favor. You don't remember me telling you I was going to start dating other women? Mom, don't you remember me telling you I ate an entire bag of oreos?
4. The tremors make for hilarious games of "Operation"
3. They predict the weather more accurately than the meteorologists.
2. They fall over everything.
1. Their brain is HUGE. (or as Tim likes to say, "Their brain could come flying out of the back of their head at any moment!")
9. You get to meet lots of doctors.
8. Showing off the scar is a super cool party trick.
7. Tinnitus means that the rock music gets played loudly.
6. Shopping w/ a Chiarian is great because you get to park in the handicapped spot.
5. Memory issues play to the partners/kids favor. You don't remember me telling you I was going to start dating other women? Mom, don't you remember me telling you I ate an entire bag of oreos?
4. The tremors make for hilarious games of "Operation"
3. They predict the weather more accurately than the meteorologists.
2. They fall over everything.
1. Their brain is HUGE. (or as Tim likes to say, "Their brain could come flying out of the back of their head at any moment!")
Thursday, April 14, 2011
Interruption
My health is always interrupting my day to day activities. Sometimes it is something minor like only doing 2 loads of laundry instead of 4 and sometimes it something major like having to reschedule meetings or appointments. I have come to accept it and know that having chiari, fibromyalgia, and arthritis makes life difficult and if nothing else, interesting.
However, I was supposed to be going to Madison, Wisconsin with Mary on a fun mother/daughter trip next week. We had to postpone the trip because I am in the midst of major medication changes among other things and my doctors feel it best for me to stay here. The guilt that I feel is immense. I am letting my daughter down and I hate that my body gets to dictate so much of my life.
I miss my friends terribly - they really are family and I know that though they understand, they have taken vacation days and planned next week around Mary and I. My inability to go changes not just my life but many others. This in turn causes massive guilt which is an ever constant by-product of a chronic illness.
So next week, Mary and I will be here in Cooperstown. Hopefully, friends will have time to do some fun things and won't mind helping keep me propped up for a few more weeks until all the medication changes are done and life is calm again. My friends here deserve a vacation from me that I was most happy to give them. However, I think that the doctors are correct and they do have my best interest in mind.
Life has once again thrown me a curve ball but I am determined to stay positive, do something fun, and somehow make it up to my friends here who are stuck with me and my friends who I miss terribly.
However, I was supposed to be going to Madison, Wisconsin with Mary on a fun mother/daughter trip next week. We had to postpone the trip because I am in the midst of major medication changes among other things and my doctors feel it best for me to stay here. The guilt that I feel is immense. I am letting my daughter down and I hate that my body gets to dictate so much of my life.
I miss my friends terribly - they really are family and I know that though they understand, they have taken vacation days and planned next week around Mary and I. My inability to go changes not just my life but many others. This in turn causes massive guilt which is an ever constant by-product of a chronic illness.
So next week, Mary and I will be here in Cooperstown. Hopefully, friends will have time to do some fun things and won't mind helping keep me propped up for a few more weeks until all the medication changes are done and life is calm again. My friends here deserve a vacation from me that I was most happy to give them. However, I think that the doctors are correct and they do have my best interest in mind.
Life has once again thrown me a curve ball but I am determined to stay positive, do something fun, and somehow make it up to my friends here who are stuck with me and my friends who I miss terribly.
Monday, April 11, 2011
Awakening
While receiving reiki the other day, I felt awakened. What does that mean? It means that as I have worked for years to shed the skin of my past and start anew, my hard work is paying off. I have done (and am doing) the therapy. I have changed the cycle. I have come to appreciate my uniqueness and celebrate myself. However, there were things I was still holding on to. For instance, the need to clean. Constantly. As I sat in the chair feeling the energy flow through me, my mind drifted to how clean my home is going to look in a few years when the kids are gone and how sad I will be. Awakened to how wonderful my life is now. It isn't that I haven't realized or thought these things before. However, the thoughts seem to be inhabiting me where before they would flutter in and out.
Life is not perfect and I am in pain but that isn't the point. The importance of being awake in this life is to be present in the moment we are given. Whether that be in horrific pain and realizing that you are strong enough to handle it or sitting at the dinner table appreciating the love of your partner and children. I think that it is a concept that we all want to utelize but we don't. The demands of work, partners, children, and friends have us thinking into next month while today whittles away. As we lay in bed trying to sleep, the day is measured in what we accomplished, a mental list is made of what was missed, and there usually isn't time in those listings for gratitude and peace in that we had a day. We were given one more spin on the earth. One more hug from our children, loved one, friend...
As I have lived through the last 8 years, much of my time was spent regretting the things I wasn't able to or couldn't do. I allowed times of my life to be consumed with guilt, frustration, loneliness, and anger. While I think that all of that is perfectly reasonable and expected, I missed out a bit on myself and those around me. The awakening I am speaking of now isn't just one of appreciating what I have in this life, it is the discovery of who I am and what brings me joy. It is understanding and believing that I bring joy to others.
Today, I spent a little while in the garden and felt alive and grateful. I was able to focus on that moment and let everything else I was trying to accomplish today sit on the back shelf. I have been trying to practice this for awhile now and am just beginning to realize the joy that can come from being in the moment. Sometimes it isn't joy - it is pain, frustration, and sadness that comes to us as we live in the present and that is okay! Each moment of our lives is not going to be filled with joy - it isn't possible. However, if we learn to live in the moment we will find peace. We will find joy. We will realize that being present is more important than planning the future because even in the sadness or frustration, we are experiencing life as it is. Those imperfect moments make the wonderful, joyful moments even better.
Life is not perfect and I am in pain but that isn't the point. The importance of being awake in this life is to be present in the moment we are given. Whether that be in horrific pain and realizing that you are strong enough to handle it or sitting at the dinner table appreciating the love of your partner and children. I think that it is a concept that we all want to utelize but we don't. The demands of work, partners, children, and friends have us thinking into next month while today whittles away. As we lay in bed trying to sleep, the day is measured in what we accomplished, a mental list is made of what was missed, and there usually isn't time in those listings for gratitude and peace in that we had a day. We were given one more spin on the earth. One more hug from our children, loved one, friend...
As I have lived through the last 8 years, much of my time was spent regretting the things I wasn't able to or couldn't do. I allowed times of my life to be consumed with guilt, frustration, loneliness, and anger. While I think that all of that is perfectly reasonable and expected, I missed out a bit on myself and those around me. The awakening I am speaking of now isn't just one of appreciating what I have in this life, it is the discovery of who I am and what brings me joy. It is understanding and believing that I bring joy to others.
Today, I spent a little while in the garden and felt alive and grateful. I was able to focus on that moment and let everything else I was trying to accomplish today sit on the back shelf. I have been trying to practice this for awhile now and am just beginning to realize the joy that can come from being in the moment. Sometimes it isn't joy - it is pain, frustration, and sadness that comes to us as we live in the present and that is okay! Each moment of our lives is not going to be filled with joy - it isn't possible. However, if we learn to live in the moment we will find peace. We will find joy. We will realize that being present is more important than planning the future because even in the sadness or frustration, we are experiencing life as it is. Those imperfect moments make the wonderful, joyful moments even better.
Saturday, April 9, 2011
Emerging
So after a rough 10 days, it feels great to share that I had a wonderful day. I spent the day doing hospice training and was so at peace. I think that knowing, deep within my core, that I am doing exactly what I am meant to be has brought profound peace and acceptance. It makes me sad to think back on some of the more difficult times in the last week or so when I questioned whether or not I wanted to be a part of this world as I know how much I would have lost - my children singing last night in the talent show, my partner's wonderful sense of humor and amazing talent, and knowing that I have a purpose greater than just coping with pain.
It is a wonderful experience to emerge out of the darkness and into the light. I am not naive enough to believe that there will not be another bump in the road but I know that with each hurdle, my resolve strengthens and my tools sharpen as I cope with my life.
I am immensely grateful for my friends who have stood by me and have lifted me up, reminded me to laugh, and filled my heart with love.
It is a wonderful experience to emerge out of the darkness and into the light. I am not naive enough to believe that there will not be another bump in the road but I know that with each hurdle, my resolve strengthens and my tools sharpen as I cope with my life.
I am immensely grateful for my friends who have stood by me and have lifted me up, reminded me to laugh, and filled my heart with love.
Friday, April 8, 2011
Fear, Depression, and Recovery Part III
I am sitting in the crisis center with a friend and going through all the medical things that must happen before they even begin to decide how crazy I am. While this is taking place the overwhelming-stop me in my tracks-fear of being back in the hospital hits me. The doctor has written for blood to be drawn and here comes the lab to do it. I explain I am a difficult stick. (the record for sticking me is 12 times - my veins roll, blow, and disappear) I explain that even the I.V. team has difficulty getting in a tiny 24 gauge. The gentleman listens but I can see that he doesn't quite believe me. I look my friend, E, in the eye and I tell her that this is the literal embodiment of what I fear.
Over the next hour (no joke, it took an hour to get a vein and get just 2 vials of blood - they wanted 3 but couldn't do it) she sees firsthand why before I even looked at the paperwork from my childhood last Wednesday I was living each moment terrified and worried that it would be my last day up and about before having to be back in the hospital or bed. She saw the ridiculous questions doctors ask me. (One doctor explained to me what chiari is. Seriously.) She saw firsthand what others only read in the blog or know from talking to me. I am not an adequate enough writer to begin to convey the tension, emotions, frustration, and exhaustion that come from sitting there for an hour being poked over and over again just to get 2 tiny vials of blood that in the end, they weren't even sure would work as they were clotting too fast since there was so little blood in the vials.
This is my life in technicolor. Parts of it are beautiful - children, Tim, friends, Mom but there are also parts that are too vivid for most people to handle. Thankfully, E handled everything like she had been there a thousand times on this journey with me.
She and I talk constantly between the medical staff coming and asking medical history questions and drawing blood etc. I realize how exhausted my body and mind are. Finally, a psych nurse asks me if I can contract to stay safe and they will send me home. I say that I can, sign it and I am out of there....except that I am not sure I can.
As I sign out of the hospital, E senses how conflicted and overwhelmed I am. I share that though I love my children more than anything in the world, I cannot be Mom right now and take care of myself. It is too overwhelming. It breaks my heart to admit that. As a mother there should never be a time that I cannot set aside whatever I am dealing with to take care of the kids. But I just cannot do it. We talk about options - calling friends etc. and I am reticent to do so. What friend needs 'Debby Downer' coming over to spend the night? After a half hour, I decide to just go home and all will be fine I assure her. It does feel great to be home and embraced by my wonderful children and husband. However, it also increases the guilt that I feel for not wanting to be on this planet any longer which sends me into another tailspin and circular thinking. Guilt = Bad = No worth = Depressed = Pain = Suicide which leads me back to guilt.
I manage to survive the night and awake Monday around noon. My body was exhausted and I guess needed the sleep. However, I still don't have a plan on how to get through all of this and I am desperate. I wait for Tim to come home and we talk. He assures me that I am not a horrible parent for not being able to be a Mom right now and encourages me to call a friend.
So I end up spending Monday night at R's and then amble between appointments on Tuesday. I am still feeling suicidal but I don't have a plan. I drop by my dear friend K's house and have a great conversation. Some things become clear. First, I am not a horrible Mom for needing a break. Second, there are things in life that I am looking forward to achieving and doing. Third, being overwhelmed is understandable. However, in all of this, the most important piece that became clear to me is that my friends love me. They are not keeping track that in February they chose to help with dinners while I was in the hospital and recovering and I now need them again. There is no scoreboard in friendship. I confess that while I don't keep a scorecard for my friends, I guess I always assumed they did with me as I have so much going on. It is a great relief.
I end up going home on Tuesday night and spending a little time with the kids before bed. Tim and I talk a bit too but I am wiped out. Turning a corner was wonderful and yet it sent my body into raging pain as some of the anxiety I had been living with ebbed and in it's place physical pain flowed in.
My therapist and I had a session which hit the nail on the head and while I am not ready to share it, I acknowledge that I have some work to do. I always thought that by the time I was 37 my past wouldn't really matter much but I am wrong. It matters greatly and influences so much of my thinking and actions - both positive and negative. I take amazing care of others and go out of my way to love my children, partner and friends. However, I take horrible care of myself and don't recognize my worth. This needs to change.
Since Tuesday, I am still seeing my therapist frequently, talking to my doctor everyday, reaching out to friends, and trying to enjoy my family and not clean the house (for those who haven't been reading or know me - I clean constantly. It is instant gratification.) I am too tired to clean or do much more than exist but as a friend told me last night, at least you are existing.
The moral of this story is that sometimes you are going to get knocked on your ass when you least expect it. You are going to fall hard and it is going to leave your breathless and gasping for air. Reach out to your friends and allow them to love you. It isn't easy (I am still wrestling with it) but they will help keep you balanced and walking until you can do it on your own. I am not there yet but am determined to make it. Having chiari, fibromyalgia and arthritis make everything worse. So does my childhood. However, having friends like Katie, Karen, Carol, Roe, Elsie, Kim and Kerri who remind me I am loved has made all the difference. Thank you also to my long distance friends who could only be here via email and facebook - your love was and is felt. I wrote this on facebook last week and though it was true then, it has become more real since. "Sometimes bravery cannot be seen in the wielding of a sword, a public fight for justice or shown in a tangible way such as a plaque or decree. Rather, bravery is in the consistent determination to not give up despite the consuming exhaustion."
Over the next hour (no joke, it took an hour to get a vein and get just 2 vials of blood - they wanted 3 but couldn't do it) she sees firsthand why before I even looked at the paperwork from my childhood last Wednesday I was living each moment terrified and worried that it would be my last day up and about before having to be back in the hospital or bed. She saw the ridiculous questions doctors ask me. (One doctor explained to me what chiari is. Seriously.) She saw firsthand what others only read in the blog or know from talking to me. I am not an adequate enough writer to begin to convey the tension, emotions, frustration, and exhaustion that come from sitting there for an hour being poked over and over again just to get 2 tiny vials of blood that in the end, they weren't even sure would work as they were clotting too fast since there was so little blood in the vials.
This is my life in technicolor. Parts of it are beautiful - children, Tim, friends, Mom but there are also parts that are too vivid for most people to handle. Thankfully, E handled everything like she had been there a thousand times on this journey with me.
She and I talk constantly between the medical staff coming and asking medical history questions and drawing blood etc. I realize how exhausted my body and mind are. Finally, a psych nurse asks me if I can contract to stay safe and they will send me home. I say that I can, sign it and I am out of there....except that I am not sure I can.
As I sign out of the hospital, E senses how conflicted and overwhelmed I am. I share that though I love my children more than anything in the world, I cannot be Mom right now and take care of myself. It is too overwhelming. It breaks my heart to admit that. As a mother there should never be a time that I cannot set aside whatever I am dealing with to take care of the kids. But I just cannot do it. We talk about options - calling friends etc. and I am reticent to do so. What friend needs 'Debby Downer' coming over to spend the night? After a half hour, I decide to just go home and all will be fine I assure her. It does feel great to be home and embraced by my wonderful children and husband. However, it also increases the guilt that I feel for not wanting to be on this planet any longer which sends me into another tailspin and circular thinking. Guilt = Bad = No worth = Depressed = Pain = Suicide which leads me back to guilt.
I manage to survive the night and awake Monday around noon. My body was exhausted and I guess needed the sleep. However, I still don't have a plan on how to get through all of this and I am desperate. I wait for Tim to come home and we talk. He assures me that I am not a horrible parent for not being able to be a Mom right now and encourages me to call a friend.
So I end up spending Monday night at R's and then amble between appointments on Tuesday. I am still feeling suicidal but I don't have a plan. I drop by my dear friend K's house and have a great conversation. Some things become clear. First, I am not a horrible Mom for needing a break. Second, there are things in life that I am looking forward to achieving and doing. Third, being overwhelmed is understandable. However, in all of this, the most important piece that became clear to me is that my friends love me. They are not keeping track that in February they chose to help with dinners while I was in the hospital and recovering and I now need them again. There is no scoreboard in friendship. I confess that while I don't keep a scorecard for my friends, I guess I always assumed they did with me as I have so much going on. It is a great relief.
I end up going home on Tuesday night and spending a little time with the kids before bed. Tim and I talk a bit too but I am wiped out. Turning a corner was wonderful and yet it sent my body into raging pain as some of the anxiety I had been living with ebbed and in it's place physical pain flowed in.
My therapist and I had a session which hit the nail on the head and while I am not ready to share it, I acknowledge that I have some work to do. I always thought that by the time I was 37 my past wouldn't really matter much but I am wrong. It matters greatly and influences so much of my thinking and actions - both positive and negative. I take amazing care of others and go out of my way to love my children, partner and friends. However, I take horrible care of myself and don't recognize my worth. This needs to change.
Since Tuesday, I am still seeing my therapist frequently, talking to my doctor everyday, reaching out to friends, and trying to enjoy my family and not clean the house (for those who haven't been reading or know me - I clean constantly. It is instant gratification.) I am too tired to clean or do much more than exist but as a friend told me last night, at least you are existing.
The moral of this story is that sometimes you are going to get knocked on your ass when you least expect it. You are going to fall hard and it is going to leave your breathless and gasping for air. Reach out to your friends and allow them to love you. It isn't easy (I am still wrestling with it) but they will help keep you balanced and walking until you can do it on your own. I am not there yet but am determined to make it. Having chiari, fibromyalgia and arthritis make everything worse. So does my childhood. However, having friends like Katie, Karen, Carol, Roe, Elsie, Kim and Kerri who remind me I am loved has made all the difference. Thank you also to my long distance friends who could only be here via email and facebook - your love was and is felt. I wrote this on facebook last week and though it was true then, it has become more real since. "Sometimes bravery cannot be seen in the wielding of a sword, a public fight for justice or shown in a tangible way such as a plaque or decree. Rather, bravery is in the consistent determination to not give up despite the consuming exhaustion."
Thursday, April 7, 2011
Fear, Depression, and Recovery Part II
So after the emotional bomb that was dropped on my lap last Wednesday I was extremely fragile. Thursday I spent most of the day in bed or reading the documents again. I was so miserable emotionally and physically that I was losing the ability to care. That isn't to say that I don't love my children more than anything or that I don't love Tim - sometimes the heart just cannot bear the burden it is expected to carry. Our life became more complicated on Friday morning around 3:00 a.m. when the oil burner for our furnace began leaking oil into our home. We all immediately got dressed and grabbed our stuff and were off to Tim's parents for a few hours to try and make a game plan.
At this point, though I was not sharing my emotions with Tim or anyone else, I was completely spent and done. First the car dies and now this. Who did I piss off in a past life? I know that Karma is a bitch but seriously, what did I ever do to anyone? I was at the lowest point I had been since I was 19....and sinking fast.
The kids and I went to a friends house on Friday and hung out for the afternoon and I spent the night. The nurturing I received from K&C was exactly what I needed. They knew about the papers (I had sent them a copy), they felt and understood my pain, they fed me both literally and spiritually but it didn't seem to matter. I was still sinking. That I could be so loved and still sinking terrified me but I kept my thoughts to myself. How could I explain to everyone who loves me that suicide seemed like the most logical decision?
I spent Saturday with D&J and they were a great distraction. Laughter rang from me but I admit that most of it was hollow. It was as if my body was there but my mind was 10 feet away watching everything unfold and wanting to run faster and faster away from everything and everyone.
Sunday morning I came home and (through the horrible smell of oil that Tim had been furiously trying to rid) told Tim that I was overwhelmed in every sense. I shared where my thought patterns were going. Most of which he knew from living with me for almost 17 years and what I had shared with him over the last few days but he had no idea that I had become suicidal. We talked about what options I had - should I call my therapist? doctor? go to the hospital? I decided that I would call my doctor and therapist.
My therapist told me on the phone that she would meet with me in 40 minutes. She also told me "use your brain Tamara!". I must admit to being angry about that. I was using my brain and every cell said that your friends and family would be much better off if my crazy ass were not here. They would not have to deal with all this garbage that I carry on my heart, they wouldn't have to deal with chiari, fibromyalgia or arthritis, they wouldn't have to take care of me if I end up in bed again or in the hospital - they could have a normal life which is what I want for them.
When I saw her 40 minutes later I asked her about the comment (I was offended) and she said that she was referring to the documents: how could I have expected to read them and NOT be completely knocked off my foundation for a few days? Though that should have made me feel better it only made me angrier. I thought I could handle it. I believed with the very core of my being that reading those would be no different than reading the paper. They were words on a page that I had lived. If I come across paperwork from when I had my children, I don't think of the horrible, burning, pushing pain of childbirth....
I admit that I am suicidal. She calls my doctor who gets on the phone with me and asks me if I have a plan. I plead the fifth. In case you are wondering, that does NOT work with doctors who think you are suicidal and tends to make them even more worried. I am not given a choice and told to go to the crisis center. I try and bargain but needless to say, I end up at the crisis center. Having a doctor that you respect more than almost anyone in the world is wonderful and can also suck. If she had been anyone else, I would have told them where to get on the next train to screw yourself and would have walked out of the office. Instead, I call a friend and head to the crisis center.
At this point, though I was not sharing my emotions with Tim or anyone else, I was completely spent and done. First the car dies and now this. Who did I piss off in a past life? I know that Karma is a bitch but seriously, what did I ever do to anyone? I was at the lowest point I had been since I was 19....and sinking fast.
The kids and I went to a friends house on Friday and hung out for the afternoon and I spent the night. The nurturing I received from K&C was exactly what I needed. They knew about the papers (I had sent them a copy), they felt and understood my pain, they fed me both literally and spiritually but it didn't seem to matter. I was still sinking. That I could be so loved and still sinking terrified me but I kept my thoughts to myself. How could I explain to everyone who loves me that suicide seemed like the most logical decision?
I spent Saturday with D&J and they were a great distraction. Laughter rang from me but I admit that most of it was hollow. It was as if my body was there but my mind was 10 feet away watching everything unfold and wanting to run faster and faster away from everything and everyone.
Sunday morning I came home and (through the horrible smell of oil that Tim had been furiously trying to rid) told Tim that I was overwhelmed in every sense. I shared where my thought patterns were going. Most of which he knew from living with me for almost 17 years and what I had shared with him over the last few days but he had no idea that I had become suicidal. We talked about what options I had - should I call my therapist? doctor? go to the hospital? I decided that I would call my doctor and therapist.
My therapist told me on the phone that she would meet with me in 40 minutes. She also told me "use your brain Tamara!". I must admit to being angry about that. I was using my brain and every cell said that your friends and family would be much better off if my crazy ass were not here. They would not have to deal with all this garbage that I carry on my heart, they wouldn't have to deal with chiari, fibromyalgia or arthritis, they wouldn't have to take care of me if I end up in bed again or in the hospital - they could have a normal life which is what I want for them.
When I saw her 40 minutes later I asked her about the comment (I was offended) and she said that she was referring to the documents: how could I have expected to read them and NOT be completely knocked off my foundation for a few days? Though that should have made me feel better it only made me angrier. I thought I could handle it. I believed with the very core of my being that reading those would be no different than reading the paper. They were words on a page that I had lived. If I come across paperwork from when I had my children, I don't think of the horrible, burning, pushing pain of childbirth....
I admit that I am suicidal. She calls my doctor who gets on the phone with me and asks me if I have a plan. I plead the fifth. In case you are wondering, that does NOT work with doctors who think you are suicidal and tends to make them even more worried. I am not given a choice and told to go to the crisis center. I try and bargain but needless to say, I end up at the crisis center. Having a doctor that you respect more than almost anyone in the world is wonderful and can also suck. If she had been anyone else, I would have told them where to get on the next train to screw yourself and would have walked out of the office. Instead, I call a friend and head to the crisis center.
Wednesday, April 6, 2011
Fear, Depression, and Recovery Part I
For the last few weeks, I have lived almost every moment in fear. No, there isn't anything abusive going on in my home or with friends. I worry and am constantly fearful that the chiari-fibromyalgia-arthritis pain will come on so strong that I will end up back in bed or in the hospital and I won't be able to accomplish the goals I have placed before me.
It is incredibly difficult to explain to someone who has never been chronically ill or severely sick for a prolonged time what it is like to live in bed while the world continues on without you. I would never want my family and friends to all stop their lives and sit in bed with me (that would be a rather crowded bed) but I need them to remember that I am in bed and perhaps stop by for a chat or a cup of tea. This past January and February that is exactly what happened and I am immensely grateful for those who popped over to see me or came to the hospital to visit. However, even with their wonderful love and support, I still had to stop doing the things that were important to me and allow my body to just exist until I could push it along and get it going again.
I have not been handling living in fear well. It causes me to do much more than I probably should at a given moment because there is that voice in my head reminding me that I could lose it all again and be back in bed.
I have great plans for myself for this year. I have commitments to various volunteering activities that I find to be extremely important. I have to be healthy. I have to be okay. What if the next time I end up in bed with a bad flair of pain the people that I work with decide that it isn't worth working with me because there are times I cannot be there? What if they decide that it would be easier to replace me than to work around this ridiculous body of mine that can shut down without notice? These are the fears playing constantly in my mind.
For weeks now I have been dealing with this, mentioning it here and there but never really talking about it. Then a series of things happened in my life that caused the fear to increase and sent me into a total emotional tailspin. First, our car died. I realize that this seems relatively innocuous but it was the first in a string of events that eventually became too much to handle. The car only has 87K miles on it and the engine froze. It was paid off. Finding a new engine and trying to get the work done has been stressful. Not to mention the financial burden but hey, this kind of crap happens to everyone at some point so I was able to let that go relatively easily.
Then, there was last week or what I will call the 'week from hell'. First, let me explain something: I think I am super strong. I think that there is nothing I cannot handle. For the record, I was wrong.
I had decided to write the book that so many have encouraged over the years and to do so, I wanted to have the legal documents from my childhood regarding the indictments, plea bargains, sentencing etc. so that I would have the facts absolutely indisputable. I know them as I have lived them but I wanted to make sure that my dates were correct etc. On Wednesday, I phoned the courthouse in Wood County Ohio and inquired about getting those records. According to the information I had, I believed I would have to go in person and get these materials so I was planning on going to Ohio with my Mom and retrieving them. As it turned out, they were able to be emailed to me. I thought, "Great! Now I won't have to make a trip just to go get those". So I asked the court to email them to me.
I proceeded to open them and the first document was the grand jury indictment. Let's just say without all the gory details that it went downhill from there. Every document showing my childhood in black and white was suddenly appearing on my computer screen. The words that I knew and had heard spoken became real again and along with that, intense emotional pain. Crushing my heart and inability to breathe pain. What I thought were just words was actually my horrific childhood staring me in the face. I saw the 14 year old me having to deal with all of this. I felt her pain and anxiety. I felt and saw the words with a different perspective than ever before: the perspective of time. The appreciation of what it took to be a kid going through that, the knowledge that those papers (though ending in 1991) caused issues that I still deal with, the understanding of the bravery it took, and the part of my soul that I have never been able to retrieve from that horrible childhood. Time does not, in fact, heal all wounds. It allows us to move forward but some wounds never heal, they just scab over. Receiving those documents forced the scab off and the searing pain to erupt from me.
The breakdown that I had been cautiously avoiding (from fear of illness) hit me as though I had driven 100 miles an hour into a brick wall...leaving me to pick up the pieces, sew them back together and become whole once again.
It is incredibly difficult to explain to someone who has never been chronically ill or severely sick for a prolonged time what it is like to live in bed while the world continues on without you. I would never want my family and friends to all stop their lives and sit in bed with me (that would be a rather crowded bed) but I need them to remember that I am in bed and perhaps stop by for a chat or a cup of tea. This past January and February that is exactly what happened and I am immensely grateful for those who popped over to see me or came to the hospital to visit. However, even with their wonderful love and support, I still had to stop doing the things that were important to me and allow my body to just exist until I could push it along and get it going again.
I have not been handling living in fear well. It causes me to do much more than I probably should at a given moment because there is that voice in my head reminding me that I could lose it all again and be back in bed.
I have great plans for myself for this year. I have commitments to various volunteering activities that I find to be extremely important. I have to be healthy. I have to be okay. What if the next time I end up in bed with a bad flair of pain the people that I work with decide that it isn't worth working with me because there are times I cannot be there? What if they decide that it would be easier to replace me than to work around this ridiculous body of mine that can shut down without notice? These are the fears playing constantly in my mind.
For weeks now I have been dealing with this, mentioning it here and there but never really talking about it. Then a series of things happened in my life that caused the fear to increase and sent me into a total emotional tailspin. First, our car died. I realize that this seems relatively innocuous but it was the first in a string of events that eventually became too much to handle. The car only has 87K miles on it and the engine froze. It was paid off. Finding a new engine and trying to get the work done has been stressful. Not to mention the financial burden but hey, this kind of crap happens to everyone at some point so I was able to let that go relatively easily.
Then, there was last week or what I will call the 'week from hell'. First, let me explain something: I think I am super strong. I think that there is nothing I cannot handle. For the record, I was wrong.
I had decided to write the book that so many have encouraged over the years and to do so, I wanted to have the legal documents from my childhood regarding the indictments, plea bargains, sentencing etc. so that I would have the facts absolutely indisputable. I know them as I have lived them but I wanted to make sure that my dates were correct etc. On Wednesday, I phoned the courthouse in Wood County Ohio and inquired about getting those records. According to the information I had, I believed I would have to go in person and get these materials so I was planning on going to Ohio with my Mom and retrieving them. As it turned out, they were able to be emailed to me. I thought, "Great! Now I won't have to make a trip just to go get those". So I asked the court to email them to me.
I proceeded to open them and the first document was the grand jury indictment. Let's just say without all the gory details that it went downhill from there. Every document showing my childhood in black and white was suddenly appearing on my computer screen. The words that I knew and had heard spoken became real again and along with that, intense emotional pain. Crushing my heart and inability to breathe pain. What I thought were just words was actually my horrific childhood staring me in the face. I saw the 14 year old me having to deal with all of this. I felt her pain and anxiety. I felt and saw the words with a different perspective than ever before: the perspective of time. The appreciation of what it took to be a kid going through that, the knowledge that those papers (though ending in 1991) caused issues that I still deal with, the understanding of the bravery it took, and the part of my soul that I have never been able to retrieve from that horrible childhood. Time does not, in fact, heal all wounds. It allows us to move forward but some wounds never heal, they just scab over. Receiving those documents forced the scab off and the searing pain to erupt from me.
The breakdown that I had been cautiously avoiding (from fear of illness) hit me as though I had driven 100 miles an hour into a brick wall...leaving me to pick up the pieces, sew them back together and become whole once again.
Thursday, March 31, 2011
Black and White
Recently, as I have come to recognize my calling in life and am deciding the best way to follow that, I have realized that there were parts of my life that I had left behind and needed to bring with me...if for no other reason than to remind myself that I survived. Unfortunately, as I accessed documents and people in my past, I realized that my life had been whittled down to legal jargon and medical diagnoses in black and white.
As I delved into my past I came face to face with the court documents that detail my traumatic childhood. Yet, in all the legal jargon, the emotion and pain is lost. It reads like a million other documents. I was struck by how clinical it felt to read the indictments and sentencing records as well as court documents. There was no mention about a ruined childhood or a tragic one - just facts and legalese.
My medical chart is the same. It lists my diagnoses and medications and there are references to the tragedies that caused these injuries but it doesn't talk about me as a person. On a given day my chart will list my pain as a 9 out of 10 but omits that I am crying, miserable, missing out on events and gatherings. It fails to explain the defeated human spirit I am carrying on that day. The chart is my life simplified to clinical diagnosis to be passed along to the next provider.
How many parts of our life do we whittle down to mere words and ignore the intense emotion?
I realize that our medical and legal systems would crumble if they had to record the injustices in emotional language. No one would be able to handle it. The legal or medical jargon enables us to focus on the issue and stay an arms length from the human suffering. However, I think it is important to remember that behind each of those medical charts or legal files is a living person. Someone who is hurting dramatically in ways we cannot imagine. If we think a bit more about the humanity and less about the clinical diagnoses or legal jargon would we be moved to help those in need? It is much more difficult to continue along in our ruts when we remember that behind each medical chart or legal file is a living person dealing with unimaginable pain, frustration, and loss. Life isn't lived in black and white and the tragedies we survive should be available to people in color. Perhaps if in reading our history we were forced to see it in color, it wouldn't be quite so easy to repeat it.
As I delved into my past I came face to face with the court documents that detail my traumatic childhood. Yet, in all the legal jargon, the emotion and pain is lost. It reads like a million other documents. I was struck by how clinical it felt to read the indictments and sentencing records as well as court documents. There was no mention about a ruined childhood or a tragic one - just facts and legalese.
My medical chart is the same. It lists my diagnoses and medications and there are references to the tragedies that caused these injuries but it doesn't talk about me as a person. On a given day my chart will list my pain as a 9 out of 10 but omits that I am crying, miserable, missing out on events and gatherings. It fails to explain the defeated human spirit I am carrying on that day. The chart is my life simplified to clinical diagnosis to be passed along to the next provider.
How many parts of our life do we whittle down to mere words and ignore the intense emotion?
I realize that our medical and legal systems would crumble if they had to record the injustices in emotional language. No one would be able to handle it. The legal or medical jargon enables us to focus on the issue and stay an arms length from the human suffering. However, I think it is important to remember that behind each of those medical charts or legal files is a living person. Someone who is hurting dramatically in ways we cannot imagine. If we think a bit more about the humanity and less about the clinical diagnoses or legal jargon would we be moved to help those in need? It is much more difficult to continue along in our ruts when we remember that behind each medical chart or legal file is a living person dealing with unimaginable pain, frustration, and loss. Life isn't lived in black and white and the tragedies we survive should be available to people in color. Perhaps if in reading our history we were forced to see it in color, it wouldn't be quite so easy to repeat it.
Monday, March 28, 2011
Need a few days off...
I have wonderful news to report:
Robert is the runner up in the Regional division of the Scripps Spelling Bee!
Mary received a 100% on her math test (which is so difficult and rare that students who accomplish this receive a phone call from their teacher).
So while things are going well for my kids and Tim is busy as ever (just finished a musical and another one started rehearsals this past weekend) I am also super busy and will be taking a couple of days off. I am working on completing my Reiki I certification as well as writing 3 blog entries that are taking some time as I want to convey exactly what I mean and what I feel which isn't always the easiest to do. I am also tackling the fundraising and travel plans for the CCS Jazz Band trip to New Orleans in April 2012 and the paperwork is time consuming right now but will ease off a bit in a day or two.
Thank you for reading. Your reactions to this blog have inspired me to reach out to others, share my journey, and hopefully remind people that in the midst of terrible pain there is also joy and laughter.
Hoping everyone has the spoons they need for today.
~Zip
Robert is the runner up in the Regional division of the Scripps Spelling Bee!
Mary received a 100% on her math test (which is so difficult and rare that students who accomplish this receive a phone call from their teacher).
So while things are going well for my kids and Tim is busy as ever (just finished a musical and another one started rehearsals this past weekend) I am also super busy and will be taking a couple of days off. I am working on completing my Reiki I certification as well as writing 3 blog entries that are taking some time as I want to convey exactly what I mean and what I feel which isn't always the easiest to do. I am also tackling the fundraising and travel plans for the CCS Jazz Band trip to New Orleans in April 2012 and the paperwork is time consuming right now but will ease off a bit in a day or two.
Thank you for reading. Your reactions to this blog have inspired me to reach out to others, share my journey, and hopefully remind people that in the midst of terrible pain there is also joy and laughter.
Hoping everyone has the spoons they need for today.
~Zip
Friday, March 25, 2011
Adventures in Driving
So after the emotional posts of the last few days, I decided that a light post was what we all needed. Tim and I have had many adventures and this is one of our most treasured.
We had been married 1.5 years and were living in Bowling Green, Ohio while Tim was finishing a double masters and I was finishing my undergraduate degree that I had changed from music to American Culture Studies. We were planning a trip to Cooperstown to see his family with our lovable lab/spaniel mix Nelly. She loved riding in cars so the 9 hour trip wasn't daunting because of her. However, with both of us working, going to school and Tim teaching on top of it - we were rather tired.
At that time, we had two cars. Well, actually we had a stick shift Chevy Cavalier and a mini-van (how unhip before children) to cart Tim's gear around to all his gigs. I had been driving the cavalier almost exclusively but we took the van without the back seats in it so that Nelly had lots of room and so Tim could lay down in the back and sleep as he was exhausted while I took the first shift of driving.
Being the good scout, he had a great sleeping bag that he laid down in the back, snuggled in, and was off to sleep before we left the driveway. Nelly was soon curled in the front seat sleeping as well. Things were going fine - I managed to get us through Cleveland without running any idiot drivers off the road (I used to have a bit of road rage) and about 45 minutes past Cleveland I realized how exhausted I was. I knew that I needed to wake Tim up so he could drive for awhile. Nelly is a great co-captain but she doesn't hold a conversation very well as she, too, prefers to sleep in the car.
So I put my signal on and get off at the exit taking my foot off the gas. By the time I get to the top of the ramp I don't even have to touch my brakes as I go through the green light turning left towards the McDonald's. I begin to accelerate and this is where things get tricky. See, I was used to driving the standard Chevy so as I neared the McDonald's and went to "down shift" as I slowed down, I used the "clutch" which was actually the brake.
Now understand, Tim is completely asleep in a nylon sleeping bag in the back of the mini van and Nelly is in the front seat. I went from 40 to 0 in about 15 feet. During which Nelly goes flying off of the front seat and I hear Tim's muffled yells as his whole body comes crashing to the front of the van feet first managing to get stuck under my seat. I cannot figure out for the life of me what has happened as I am assuming some sort of horrible mechanical failure of the van and I begin yelling for Tim as we are in traffic and I am terrified of being hit.
It only takes about a minute for me to realize that I am a dumbass and am actually driving an automatic. The "clutch" that I just laid on the floor is actually the brake. Laughter, uncontrollable laughter, commences and I can't get it together to drive. Tim is jarred awake trying to figure out why he was launched (literally) into the front of the car and Nelly is looking at me with words that are unkind. I am trying to explain to Tim what happened but it is no use so I manage to drive the 100 feet into the McDonald's where I safely and carefully park the car.
Tim is NOT amused at this point. His ankle hurts, head hurts, body has been smashed and he is concerned about my sanity. (This was not the first time nor will it be the last.)
So, as I let Nelly out to stretch and see if she has any injuries, I explain to Tim - through tears of laughter - that I thought I was driving the Cavalier. After about 5 minutes he sees the hilarity of the situation and is laughing uncontrollably with me. Needless to say, neither one of us had trouble staying awake the rest of the way to Cooperstown.
Today, I will be driving and Tim will randomly remind me that I am currently driving an automatic...without a clutch.
We had been married 1.5 years and were living in Bowling Green, Ohio while Tim was finishing a double masters and I was finishing my undergraduate degree that I had changed from music to American Culture Studies. We were planning a trip to Cooperstown to see his family with our lovable lab/spaniel mix Nelly. She loved riding in cars so the 9 hour trip wasn't daunting because of her. However, with both of us working, going to school and Tim teaching on top of it - we were rather tired.
At that time, we had two cars. Well, actually we had a stick shift Chevy Cavalier and a mini-van (how unhip before children) to cart Tim's gear around to all his gigs. I had been driving the cavalier almost exclusively but we took the van without the back seats in it so that Nelly had lots of room and so Tim could lay down in the back and sleep as he was exhausted while I took the first shift of driving.
Being the good scout, he had a great sleeping bag that he laid down in the back, snuggled in, and was off to sleep before we left the driveway. Nelly was soon curled in the front seat sleeping as well. Things were going fine - I managed to get us through Cleveland without running any idiot drivers off the road (I used to have a bit of road rage) and about 45 minutes past Cleveland I realized how exhausted I was. I knew that I needed to wake Tim up so he could drive for awhile. Nelly is a great co-captain but she doesn't hold a conversation very well as she, too, prefers to sleep in the car.
So I put my signal on and get off at the exit taking my foot off the gas. By the time I get to the top of the ramp I don't even have to touch my brakes as I go through the green light turning left towards the McDonald's. I begin to accelerate and this is where things get tricky. See, I was used to driving the standard Chevy so as I neared the McDonald's and went to "down shift" as I slowed down, I used the "clutch" which was actually the brake.
Now understand, Tim is completely asleep in a nylon sleeping bag in the back of the mini van and Nelly is in the front seat. I went from 40 to 0 in about 15 feet. During which Nelly goes flying off of the front seat and I hear Tim's muffled yells as his whole body comes crashing to the front of the van feet first managing to get stuck under my seat. I cannot figure out for the life of me what has happened as I am assuming some sort of horrible mechanical failure of the van and I begin yelling for Tim as we are in traffic and I am terrified of being hit.
It only takes about a minute for me to realize that I am a dumbass and am actually driving an automatic. The "clutch" that I just laid on the floor is actually the brake. Laughter, uncontrollable laughter, commences and I can't get it together to drive. Tim is jarred awake trying to figure out why he was launched (literally) into the front of the car and Nelly is looking at me with words that are unkind. I am trying to explain to Tim what happened but it is no use so I manage to drive the 100 feet into the McDonald's where I safely and carefully park the car.
Tim is NOT amused at this point. His ankle hurts, head hurts, body has been smashed and he is concerned about my sanity. (This was not the first time nor will it be the last.)
So, as I let Nelly out to stretch and see if she has any injuries, I explain to Tim - through tears of laughter - that I thought I was driving the Cavalier. After about 5 minutes he sees the hilarity of the situation and is laughing uncontrollably with me. Needless to say, neither one of us had trouble staying awake the rest of the way to Cooperstown.
Today, I will be driving and Tim will randomly remind me that I am currently driving an automatic...without a clutch.
Thursday, March 24, 2011
Tim's Guest Blog: Thoughts from the Partner
It is often very challenging indeed to be married to someone in chronic pain – watching someone you love dealing with the disappointment of missing out on the important (and seemingly unimportant) events of their life, watching them battle the inevitable depression that accompanies persistent pain, trying to move them away from feeling guilty about how their health negatively impacts your life and your children’s lives, helping them cope with hospitals, doctors, insurance companies, and pharmacists…. Oh, and did I mention the fact that your spouse is constantly in pain!
Shortly after we moved back to Cooperstown (a year-and-a-half after Tamara’s first brain surgery) Tamara read an article that talked about the high percentage of chronic pain folks [you all really need a nickname: Painiacs?] whose marriages collapse. She suffered a major bout of depression after reading this, and we argued a whole heckuva lot about the article. I was just beginning to understand all too well the reality of how difficult living with a chronic pain sufferer might be. But what I’ve discovered – and this is, of course, just me – is that your perspective and approach are what make or break you when it comes to dealing with chronic pain and its impact on your life and your marriage.
…Frustrated that you finally get a night alone with your spouse to go out to dinner, and she can’t leave the bed? Have dinner in bed and watch “Tommy Boy” for the 1000th time. Be sure to laugh at the fat guy in a little coat, and when the rhino comes too close to the car.
…Tired of having to cancel plans at the last minute because of a bad pain day? Teach yourself to relish the the adventure of “I feel okay today… let’s run to Utica and catch a movie and get some shopping done.”
…Angry about the treatment you received at the hands of some doctor? Make up wild stories about his or her incompetence, and laugh at the fact that while you only had to deal with them for a few hours, he or she has to be an asshole all their life!
….Pissed off that she can’t come see “The Lion King” on stage? Give her ticket and the opportunity to the neighborhood kid who might not get to go.
…Saddened by the fact that your loved one is hurting?...Okay, this is really where the Polyanna attitude breaks down.
Personally, I have learned to deal with almost every aspect of my wife’s chronic pain: The anger, the sadness, the guilt, the scheduling and finance headaches: Working together, we (usually) approach these things with humor, with love, and – perhaps most surprising of all – even with some optimism that our situation will improve. I can handle that Tam gets frustrated at me when I handle the medical staff differently than she would. I can take it when I see her over-exerting on her good days to do things like clean the house when I would rather she spend her spoons on herself. I can hold her when the depression hits, or – conversely – stay away from her when she needs a bit of space.
But I can’t stand to see her in pain. I doubt I ever will be able to stand it. I can try to comfort her, I can get her food and medicine, blankets, socks, or t-shirts, heating pad or ice packs, but no amount of positive thinking can get me past the fact that my…wife…hurts…..........bad.
Plain and simple: the way to live with debilitating pain in your family is to respect that it is there, but to not let it run your life entirely. Work around it the best you can – make accommodations for it, but never let it be the determiner of how you live and everything you do. Don’t let the pain replace the spouse that it’s victimizing.
And if you do find a way to handle seeing them hurt, please let me know.
Shortly after we moved back to Cooperstown (a year-and-a-half after Tamara’s first brain surgery) Tamara read an article that talked about the high percentage of chronic pain folks [you all really need a nickname: Painiacs?] whose marriages collapse. She suffered a major bout of depression after reading this, and we argued a whole heckuva lot about the article. I was just beginning to understand all too well the reality of how difficult living with a chronic pain sufferer might be. But what I’ve discovered – and this is, of course, just me – is that your perspective and approach are what make or break you when it comes to dealing with chronic pain and its impact on your life and your marriage.
…Frustrated that you finally get a night alone with your spouse to go out to dinner, and she can’t leave the bed? Have dinner in bed and watch “Tommy Boy” for the 1000th time. Be sure to laugh at the fat guy in a little coat, and when the rhino comes too close to the car.
…Tired of having to cancel plans at the last minute because of a bad pain day? Teach yourself to relish the the adventure of “I feel okay today… let’s run to Utica and catch a movie and get some shopping done.”
…Angry about the treatment you received at the hands of some doctor? Make up wild stories about his or her incompetence, and laugh at the fact that while you only had to deal with them for a few hours, he or she has to be an asshole all their life!
….Pissed off that she can’t come see “The Lion King” on stage? Give her ticket and the opportunity to the neighborhood kid who might not get to go.
…Saddened by the fact that your loved one is hurting?...Okay, this is really where the Polyanna attitude breaks down.
Personally, I have learned to deal with almost every aspect of my wife’s chronic pain: The anger, the sadness, the guilt, the scheduling and finance headaches: Working together, we (usually) approach these things with humor, with love, and – perhaps most surprising of all – even with some optimism that our situation will improve. I can handle that Tam gets frustrated at me when I handle the medical staff differently than she would. I can take it when I see her over-exerting on her good days to do things like clean the house when I would rather she spend her spoons on herself. I can hold her when the depression hits, or – conversely – stay away from her when she needs a bit of space.
But I can’t stand to see her in pain. I doubt I ever will be able to stand it. I can try to comfort her, I can get her food and medicine, blankets, socks, or t-shirts, heating pad or ice packs, but no amount of positive thinking can get me past the fact that my…wife…hurts…..........bad.
Plain and simple: the way to live with debilitating pain in your family is to respect that it is there, but to not let it run your life entirely. Work around it the best you can – make accommodations for it, but never let it be the determiner of how you live and everything you do. Don’t let the pain replace the spouse that it’s victimizing.
And if you do find a way to handle seeing them hurt, please let me know.
Wednesday, March 23, 2011
Chronic pain spouses
I am sure that it must be difficult to be married to someone in chronic pain. I wouldn't know as I am the one in chronic pain. However, Tim assures me that it is. He doesn't do so in a mean way but we talk about the facts as we see them. Our marriage always has been a 50/50 marriage since day one. In the beginning, on any one day, I might do 90% of the work with the kids and house but the next day, he might be doing 90% as I had other commitments. We don't have (didn't have) jobs/chores that were based on gender. He can cook, clean, parent just as well as I can and we always embraced everything as a team. Someone remarked that I called him my partner and not husband. For me, husband has certain connotations (submission, head of house) and Tim is truly my partner. He is 50% of me - he is my better half.
Being sick has changed that. Now, Tim is not not only my better half but often the only half of me I can get to work/function. I don't take out the trash. We live in a split level and me carrying heavy things up and down stairs is off limits. Tim carries the laundry up and down the stairs. I wash, dry, and fold it but have to rely on him to do the lifting (though I admit to cheating a little on this one...). I don't wash the dog anymore. Our 50 pound hound/shepherd mix needs to be physically kept in the tub and I cannot do it. Heavy pans require Tim to lift them. Boxes that I used to stack on the top shelf of the closet now sit next to the closet until Tim has time to lift them. When the kids were younger, if they fell asleep in our bed or on the sofa, I could carry them to bed. Once I was diagnosed in October 2003, that stopped. Mary wasn't even 4 yet and Robert had just turned 6 in August. Thus, the lines of chores became more divided based on the physical requirements. Tim is doing more than 50%.
I used to love to garden, mow the lawn, prune trees. I still do some of that but I cannot really do what I used to. I can't mow the lawn. I can only prune the little tree branches. It is now another job of Tim's. Our marriage isn't 50/50 anymore. Often it is 70/30 or sometimes it is 98/2%. Tim may have to cook, do laundry, clean the house and run the kids around on days when my body gives out (not to mention he does work). I hate those days. I hate not being able to be his partner.
Thankfully, we communicate well and talk constantly about this. I have told him many times, "It is okay if you want to go and find someone who can do all the things you can so that you can share your life with someone and not have to take care of them." He never agrees. The divorce rate among those with chronic pain is between 75 - 80% depending on the source. It is not easy to live with pain in the forefront of your lives. Regardless of whether you love the other person or not. It is a daily struggle to balance the needs of the individual, the couple, and the family and with each day bringing a different amount of pain it gets exhausting. For instance, I can have 4 or 5 good days in a row and we all start to get used to that only for me to be back in bed for 3 or 4. Though we have been through this over and over in 8 years, it still feels like getting hit in the gut when I have to go back to bed after a good streak.
Sometimes, the communication we work so hard on backfires. Tim will often say (as do I) "tomorrow will be better", or, "we will get through it". There are moments I want to scream at him - "Easy for you to say!" though I doubt it is. I live with the guilt of knowing that when we said for better or worse, neither of us could have imagined this. I know what he thought he was getting - a bassoonist to perform with, a mother for his children, a partner. Though it breaks my heart, I cannot play the bassoon any longer as it creates too much pressure in my head (any wind instrument does). I am a mother for his children but not in the way that I want to be nor in the way he wants for me. I am not his partner....Tim often has to take care of me. I do not bring 50% to the relationship anymore.
We see why the divorce rates are so high. If you stop talking and sharing the burdens of being sick together the walls go up and the anger and resentment seep in. We are determined to never let that happen. My love for Tim is complete and unending. The best I can hope for is that he never tires of taking care of me on the bad days and thankfully, he is spontaneous so he never minds changing plans so we can enjoy the good days. Someone once asked if I would do the same for Tim if the roles were swapped - if he were the sick one. In a heartbeat. But it is easy to say that until you walk in it day in and day out. I would never think less of Tim if he wanted to choose a different path and share his life with someone who could do more than I. His happiness is as important to me as my own. Thankfully, he still is here.
Being sick has changed that. Now, Tim is not not only my better half but often the only half of me I can get to work/function. I don't take out the trash. We live in a split level and me carrying heavy things up and down stairs is off limits. Tim carries the laundry up and down the stairs. I wash, dry, and fold it but have to rely on him to do the lifting (though I admit to cheating a little on this one...). I don't wash the dog anymore. Our 50 pound hound/shepherd mix needs to be physically kept in the tub and I cannot do it. Heavy pans require Tim to lift them. Boxes that I used to stack on the top shelf of the closet now sit next to the closet until Tim has time to lift them. When the kids were younger, if they fell asleep in our bed or on the sofa, I could carry them to bed. Once I was diagnosed in October 2003, that stopped. Mary wasn't even 4 yet and Robert had just turned 6 in August. Thus, the lines of chores became more divided based on the physical requirements. Tim is doing more than 50%.
I used to love to garden, mow the lawn, prune trees. I still do some of that but I cannot really do what I used to. I can't mow the lawn. I can only prune the little tree branches. It is now another job of Tim's. Our marriage isn't 50/50 anymore. Often it is 70/30 or sometimes it is 98/2%. Tim may have to cook, do laundry, clean the house and run the kids around on days when my body gives out (not to mention he does work). I hate those days. I hate not being able to be his partner.
Thankfully, we communicate well and talk constantly about this. I have told him many times, "It is okay if you want to go and find someone who can do all the things you can so that you can share your life with someone and not have to take care of them." He never agrees. The divorce rate among those with chronic pain is between 75 - 80% depending on the source. It is not easy to live with pain in the forefront of your lives. Regardless of whether you love the other person or not. It is a daily struggle to balance the needs of the individual, the couple, and the family and with each day bringing a different amount of pain it gets exhausting. For instance, I can have 4 or 5 good days in a row and we all start to get used to that only for me to be back in bed for 3 or 4. Though we have been through this over and over in 8 years, it still feels like getting hit in the gut when I have to go back to bed after a good streak.
Sometimes, the communication we work so hard on backfires. Tim will often say (as do I) "tomorrow will be better", or, "we will get through it". There are moments I want to scream at him - "Easy for you to say!" though I doubt it is. I live with the guilt of knowing that when we said for better or worse, neither of us could have imagined this. I know what he thought he was getting - a bassoonist to perform with, a mother for his children, a partner. Though it breaks my heart, I cannot play the bassoon any longer as it creates too much pressure in my head (any wind instrument does). I am a mother for his children but not in the way that I want to be nor in the way he wants for me. I am not his partner....Tim often has to take care of me. I do not bring 50% to the relationship anymore.
We see why the divorce rates are so high. If you stop talking and sharing the burdens of being sick together the walls go up and the anger and resentment seep in. We are determined to never let that happen. My love for Tim is complete and unending. The best I can hope for is that he never tires of taking care of me on the bad days and thankfully, he is spontaneous so he never minds changing plans so we can enjoy the good days. Someone once asked if I would do the same for Tim if the roles were swapped - if he were the sick one. In a heartbeat. But it is easy to say that until you walk in it day in and day out. I would never think less of Tim if he wanted to choose a different path and share his life with someone who could do more than I. His happiness is as important to me as my own. Thankfully, he still is here.
Tuesday, March 22, 2011
Celebrating the life of Guy
A friend of mine passed away a year ago today. He was much more than that - he was the head of my pain team and was a passionate advocate of mine. Guy relentlessly searched for new medications to try and help me cope with my pain. He was wonderfully sarcastic and we shared many a smiles and a laugh or two as we dealt with the life of chronic pain.
Guy understood so much as he suffered from chronic pain as well. We commiserated and bitched and then went back to the work at hand.
His amazing wife Jen is a good friend of mine and his children are wonderful, talented and smart. Kyle and my Mary are in the same grade and Katelyn is in third.
Today, please take a moment to remember a person who changed my life and so many others. Who advocated when there was no one else who wanted to take my case with my doctor as it was too complex. Guy went out of his way to help me and I will be forever grateful for that. Remember his family and their loss in your thoughts and prayers.
"What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal." - Albert Pike
Guy understood so much as he suffered from chronic pain as well. We commiserated and bitched and then went back to the work at hand.
His amazing wife Jen is a good friend of mine and his children are wonderful, talented and smart. Kyle and my Mary are in the same grade and Katelyn is in third.
Today, please take a moment to remember a person who changed my life and so many others. Who advocated when there was no one else who wanted to take my case with my doctor as it was too complex. Guy went out of his way to help me and I will be forever grateful for that. Remember his family and their loss in your thoughts and prayers.
"What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal." - Albert Pike
Monday, March 21, 2011
Determination is like a Frog
I never used to have a problem being determined but being in pain changes the perspective with which I look and do everything. I want to practice yoga 3 - 5 times a week. I wake up and look for determination to get out of bed, get over the pain and get going. It sits on the edge of the bed taunting me. By the time I lunge for it, the damn thing has hopped off towards the door. I get up and lumber after it only to watch it hop casually away. The anger and frustration begin and the pain that I woke up feeling seems to overtake the desire to do yoga.
However, on days that others are expecting or needing me, I often can find that determination. I think it is the fear of letting others down or the fear of being judged as "not capable" that allows me to capture the determination needed for that day. Once I have it I can go for a few hours and accomplish much. Though I suppose the question then is am I accomplishing much because I fear what others will think of me or because I am stubborn and determined?
My friends and family would all describe me as stubborn. A trait that for the most part, I am proud of. However, if I were so stubborn wouldn't I be able to overcome the pain and depression on those tough days and get the yoga mat out and go to town? Wouldn't I be able to ride the recumbent bike for just 7 minutes? Why cannot I use my determination for myself but only for others?
The days that I am in pain are the worst and after all these years I know it isn't the pain that bothers me as much as the not accomplishing anything. I am always happiest working - whether that be a job, volunteering, playing with my kids, helping a friend, gardening, cleaning (I love cleaning - seriously I do), working on the house. I struggle to understand why on the painful days those things which make me so happy are not enough motivation or determination to ignore the pain and push onward.
As I struggle with finding a balance between doing too much now that my pain is down to a 6, I find that the issue of determination is one that is more at the forefront of my thoughts than ever before. It is almost as if I have become obsessed with doing things. Too many days, weeks, months, and years I spent in bed in horrific pain. It seems like it should be the easiest thing in the world to overcome pain that is only a 6...I have lived with so much worse.
Determination is my frog and perhaps we just need to spend some time together, eat some flies, and decide how to be friends. After all, Kermit is a frog and I love him...
Sunday, March 20, 2011
Appreciation
Today, please think of the people in your life that make it better. Appreciate their unique talents and the joy that they bring to your life. Remember the little experiences that make each day special and stop and be grateful. Pause and meditate on what it means to be grateful, to appreciate others, to experience friendship.
In a world that is filled with immediate gratification and emphasizes the material vs. the spiritual/emotional connection between people, it is increasingly important that we stop and acknowledge the gifts we have in our life. It may be as simple as a perfect banana for breakfast or as complex as a friend who knows you best verbalizing for you what you have been struggling to explain.
There are many times and often many days that I could go without finding appreciation for my life. Being in chronic pain lends itself to easily becoming bitter. However, it is important that we don't become bitter. Life is meant to be enjoyed whether that is a picnic in bed snuggled under a comforter while your family or friends laugh and eat pizza to try and give you a "normal" experience or the kindness of a look from a loved one who knows you are in pain and they are empathizing.
I am choosing today to not focus on the pain or what I can or cannot accomplish. Instead, I am choosing to pause and appreciate the people who make my life so much better by their very presence - not to mention the love, laughter, and kindness they bring to my life. When I am at my worst, I find it comforting to stop and think of these people and know that they are thinking of me. Whether we share DNA or not, they are my family and without them I would be lost.
I hope you know I am talking to you. Yes, you. Thank you for keeping me from becoming bitter and angry. Thank you for pushing me when I was stuck and for being gentle when I needed it.
I am looking forward to the next time my friends need me. I can't wait to dish out what they have served to me - sarcasm, wit, humor, chocolate, and snark. All the best friendships in the world have chocolate, snark, and beer, with a side of love.
In a world that is filled with immediate gratification and emphasizes the material vs. the spiritual/emotional connection between people, it is increasingly important that we stop and acknowledge the gifts we have in our life. It may be as simple as a perfect banana for breakfast or as complex as a friend who knows you best verbalizing for you what you have been struggling to explain.
There are many times and often many days that I could go without finding appreciation for my life. Being in chronic pain lends itself to easily becoming bitter. However, it is important that we don't become bitter. Life is meant to be enjoyed whether that is a picnic in bed snuggled under a comforter while your family or friends laugh and eat pizza to try and give you a "normal" experience or the kindness of a look from a loved one who knows you are in pain and they are empathizing.
I am choosing today to not focus on the pain or what I can or cannot accomplish. Instead, I am choosing to pause and appreciate the people who make my life so much better by their very presence - not to mention the love, laughter, and kindness they bring to my life. When I am at my worst, I find it comforting to stop and think of these people and know that they are thinking of me. Whether we share DNA or not, they are my family and without them I would be lost.
I hope you know I am talking to you. Yes, you. Thank you for keeping me from becoming bitter and angry. Thank you for pushing me when I was stuck and for being gentle when I needed it.
I am looking forward to the next time my friends need me. I can't wait to dish out what they have served to me - sarcasm, wit, humor, chocolate, and snark. All the best friendships in the world have chocolate, snark, and beer, with a side of love.
Saturday, March 19, 2011
Guilt
For so many years I was in bed for 6 out of 7 days a week if not all 7. I did the best I could as a parent: I helped with homework, made sure the kids were bathed, had great discussions with them, read to them, fed them, loved them and tried to be the best parent I could. Often this was from bed. My bed became like the kitchen table in most homes - we had picnics on it, did homework, played sorry or uno - all on my bed.
I didn't want to be there. I wanted to be running around and chasing my kids, playing with them but I was in so much pain that I couldn't. I spent many years with my daily pain at an 8, 9 or 10. In September 2009 I had a neurostimulator implanted and it dropped my pain to a 7 which I thought was awesome. I started volunteering and getting out more. I was elated to be able to go grocery shopping. But, I was still at a 7 and spent 3 or 4 days a week in bed. Sometimes more, sometimes less depending on how much I was pushing my body.
Now, we have found medication that has dropped my pain to a 6 and sometimes a 5. I feel like I should be going 24/7. I have guilt. I have so much to make up for. I am volunteering for everything I possibly can. I am starting the chronic pain support group. I am volunteering for hospice. I have plans for the future. I am constantly cleaning the house and trying to run the kids around instead of making Tim or Aunt Terry help out. I feel that I have no excuse for not being superwoman and conquering the world. Pain at a 6 isn't that bad...
Except it kind of is. I can't fall asleep during the last week. It is taking anywhere from an hour to 3 or more to fall asleep as the pain is at an 8/9/10 when I finally stop moving and pushing and allow my body to relax. Part of me feels that this is a small price to pay to make up for lost time. The other part of me is exhausted. I cannot seem to find a balance but I feel guilty for not doing more. If I existed and volunteered when pain was a 7/8 then I have NO excuse for not doing twice as much when pain is at a 6/7 or sometimes a 5!
Chronic pain and how we cope is complex and I don't pretend to have all the answers. I admit that right now I am stumped. I don't know how to balance my life and the desires to contribute to society - not to mention the sheer joy at being able to do so - with the needs of my body and accepting that I still need a few days a week of down time for my body to just exist. I feel great amounts of guilt. I feel a duty to show my children how to overcome a difficulty or pain and keep going. I want them to see me trying harder everyday and never giving up.
I just keep thinking of all I missed out on and I don't want to miss out now. Besides, I have plans for my future and I cannot adequately convey what it is like to finally have a future. We had come to accept not being able to do things and now that I can, I can't stop.
I didn't want to be there. I wanted to be running around and chasing my kids, playing with them but I was in so much pain that I couldn't. I spent many years with my daily pain at an 8, 9 or 10. In September 2009 I had a neurostimulator implanted and it dropped my pain to a 7 which I thought was awesome. I started volunteering and getting out more. I was elated to be able to go grocery shopping. But, I was still at a 7 and spent 3 or 4 days a week in bed. Sometimes more, sometimes less depending on how much I was pushing my body.
Now, we have found medication that has dropped my pain to a 6 and sometimes a 5. I feel like I should be going 24/7. I have guilt. I have so much to make up for. I am volunteering for everything I possibly can. I am starting the chronic pain support group. I am volunteering for hospice. I have plans for the future. I am constantly cleaning the house and trying to run the kids around instead of making Tim or Aunt Terry help out. I feel that I have no excuse for not being superwoman and conquering the world. Pain at a 6 isn't that bad...
Except it kind of is. I can't fall asleep during the last week. It is taking anywhere from an hour to 3 or more to fall asleep as the pain is at an 8/9/10 when I finally stop moving and pushing and allow my body to relax. Part of me feels that this is a small price to pay to make up for lost time. The other part of me is exhausted. I cannot seem to find a balance but I feel guilty for not doing more. If I existed and volunteered when pain was a 7/8 then I have NO excuse for not doing twice as much when pain is at a 6/7 or sometimes a 5!
Chronic pain and how we cope is complex and I don't pretend to have all the answers. I admit that right now I am stumped. I don't know how to balance my life and the desires to contribute to society - not to mention the sheer joy at being able to do so - with the needs of my body and accepting that I still need a few days a week of down time for my body to just exist. I feel great amounts of guilt. I feel a duty to show my children how to overcome a difficulty or pain and keep going. I want them to see me trying harder everyday and never giving up.
I just keep thinking of all I missed out on and I don't want to miss out now. Besides, I have plans for my future and I cannot adequately convey what it is like to finally have a future. We had come to accept not being able to do things and now that I can, I can't stop.
Friday, March 18, 2011
Being our own Patient Advocate
We are the best advocates to ensure that we receive that quality of care that we deserve. However, it is tricky to advocate for yourself when you are in extreme pain and/or exhausted. So here are some tricks and hints.
1. Make sure you know your disease/illness. Knowing the right questions to ask will keep your doctors and nurses on their toes and at the top of their game.
2. Know your medications. Know the side effects of them and make sure to report anything unusual immediately. If you do not get a response in a timely manner from the staff, tell them you are having an allergic reaction. That should get them moving quickly. While some reading this might say you are telling a lie, if you are having a new side effect from the medication, you don't actually know that it isn't an allergic reaction. Allergies don't always happen from the first dose - just like allergies to bee stings might not crop up until you have been bitten 10 times.
3. Keep a journal (if possible) when you are in the hospital of the doctors who are coming to see you. If that is too difficult, ask for a business card from each of them when they stop by. They all have them and should not have a problem giving you one.
4. Keep a journal of your office visits with the doctors - both specialists and general practitioner. Write down what transpired, any new medications, any suggestions the doctors gave, blood pressure and pulse. It might seem like overkill but it gives you a very good set of information to see changes happening. For instance, my pulse rate used to be very low and over time it has risen. I brought it to my doctors attention and asked if I should be concerned. EKG's were ordered and over the last 6 months I have had 3. Nothing is wrong with my heart - it is great (phew). We were then able to analyze it and recognize it as a response from my body to being in constant pain. It also helps me know that since my "resting" heart rate ranges from 90 - 110 that when it "spikes" at 140 it isn't as drastic as a doctor who doesn't know me or my history may think. While they may be freaking out, it keeps me calmer knowing that it is just a jump of 30 or 40 beats per minute which really isn't that big of a deal. Most people rest around 70 and no one freaks out if they are at 110. See the correlation? By the way, I am not advocating for self-diagnosis, I am advocating for knowing our bodies unique way of handling pain and helping to keep us calm as we look at the big picture.
5. Get a medic alert bracelet. Even if you don't have a neurostimulator or a medical allergy, the medications you are taking are important and many have withdrawal if you stop taking them. Wear the bracelet or necklace for your protection in case you become unconscious. Not only will they know your medications and any possible interactions from how they may need to treat you, they will also contact your doctor who will help manage your care. Most people think that medic alert are just for those with an implant, an allergy, or a disease like diabetes but they are so important for those of us taking multiple medications.
6. If you have children, teach your children to not only call 911 in case of emergency but also to tell 911 (or the police/bystander if it is a car accident) that they need to call medic alert about your medication and history.
I am sure that once this posts I will think of a million other helpful suggestions but these will get you started - especially if you are a newbie to the chronic pain club. If you are, welcome and I am sorry that you are on this journey with me. I can't fix it but I can offer you friendship and the comfort of knowing you are not alone.
1. Make sure you know your disease/illness. Knowing the right questions to ask will keep your doctors and nurses on their toes and at the top of their game.
2. Know your medications. Know the side effects of them and make sure to report anything unusual immediately. If you do not get a response in a timely manner from the staff, tell them you are having an allergic reaction. That should get them moving quickly. While some reading this might say you are telling a lie, if you are having a new side effect from the medication, you don't actually know that it isn't an allergic reaction. Allergies don't always happen from the first dose - just like allergies to bee stings might not crop up until you have been bitten 10 times.
3. Keep a journal (if possible) when you are in the hospital of the doctors who are coming to see you. If that is too difficult, ask for a business card from each of them when they stop by. They all have them and should not have a problem giving you one.
4. Keep a journal of your office visits with the doctors - both specialists and general practitioner. Write down what transpired, any new medications, any suggestions the doctors gave, blood pressure and pulse. It might seem like overkill but it gives you a very good set of information to see changes happening. For instance, my pulse rate used to be very low and over time it has risen. I brought it to my doctors attention and asked if I should be concerned. EKG's were ordered and over the last 6 months I have had 3. Nothing is wrong with my heart - it is great (phew). We were then able to analyze it and recognize it as a response from my body to being in constant pain. It also helps me know that since my "resting" heart rate ranges from 90 - 110 that when it "spikes" at 140 it isn't as drastic as a doctor who doesn't know me or my history may think. While they may be freaking out, it keeps me calmer knowing that it is just a jump of 30 or 40 beats per minute which really isn't that big of a deal. Most people rest around 70 and no one freaks out if they are at 110. See the correlation? By the way, I am not advocating for self-diagnosis, I am advocating for knowing our bodies unique way of handling pain and helping to keep us calm as we look at the big picture.
5. Get a medic alert bracelet. Even if you don't have a neurostimulator or a medical allergy, the medications you are taking are important and many have withdrawal if you stop taking them. Wear the bracelet or necklace for your protection in case you become unconscious. Not only will they know your medications and any possible interactions from how they may need to treat you, they will also contact your doctor who will help manage your care. Most people think that medic alert are just for those with an implant, an allergy, or a disease like diabetes but they are so important for those of us taking multiple medications.
6. If you have children, teach your children to not only call 911 in case of emergency but also to tell 911 (or the police/bystander if it is a car accident) that they need to call medic alert about your medication and history.
I am sure that once this posts I will think of a million other helpful suggestions but these will get you started - especially if you are a newbie to the chronic pain club. If you are, welcome and I am sorry that you are on this journey with me. I can't fix it but I can offer you friendship and the comfort of knowing you are not alone.
Thursday, March 17, 2011
The Politics of Pain
While our country and states debate whether health care should be accessible for all, there is a constant struggle for those who are covered by health insurance as to what the insurer will pay for. Interestingly enough, insurance companies will spend hundreds of thousands of dollars a year on pain medication for me and other chronic pain sufferers, inpatient treatments, and a variety of specialists to try and help cope with pain. However, they will not pay for acupuncture, reiki, massage, biofeedback or unlimited therapy. All of the aforementioned therapies are ones that have been scientifically proven to have benefit to those suffering from chronic pain.
This emphasis on medication leads me to believe that the pharmaceutical industry has a much tighter grip on the insurance companies than most Americans are willing to believe. For instance, my last hospital stay was 8 days. I had a picc line. I was given numerous medications via the picc line. It was never once questioned whether I needed any of those medications or not. However, when I went to see my therapist (every person dealing with chronic pain MUST have a therapist - preferably one trained to deal with chronic pain and its complex issues) I was denied coverage for more than 10 sessions. Basically, the insurance company would rather spend literally thousands of dollars on medication than a thousand dollars for 10 sessions for me? "People with chronic pain are twice as likely to suffer from depression and anxiety as those without. You enjoy your loved ones less, and you are less enjoyable to them. If pain affects body, mind and spirit, then treatment must address these three pillars of the human condition." Clearly, the mental component of chronic pain is an extremely complex one and those suffering need a place to decompress, learn new coping skills, and vent frustration in a safe and constructive way of being forced to live a life different than we had planned.
The statistics in the Time article that I link to are staggering:
76 Million Americans experience chronic pain
Chronic pain costs close to $50 billion dollars a year
45 million Americans suffer from chronic headaches
These figures shock me. I know many many people and there are very few of them who suffer from chronic pain. Either people are not sharing their experience with me or I am staggeringly blind. Both of those scenarios I have trouble accepting. No, I don't think I am some sort of God's gift to those in chronic pain but I know that for me, I had to search to find others struggling with the same issues I was. Even when we were living in Madison WI, I knew few people who were struggling with chronic pain. So that leads me to ask two questions: what constitutes chronic pain and where is everyone?
I don't like the pain scale of 1 - 10 because every person handles and feels pain differently. Not to mention that when you have been in pain as long as I have, your baseline is different. Allow me to explain. On a scale of 1 - 10 of "normal" people, my baseline is a 7. But, if that is my baseline then doesn't a 7 = 0 for me? This scale becomes even messier when I am trying to sort out head pain from back pain. See, I tolerate head pain better than back pain because I have a headache every single second of my life. So, are researchers considering chronic pain people who are in pain (including a 1 or 2) every day of their life without any change in their day to day life or are they restricting that designation for those whose life has been greatly changed due to pain i.e. cannot work or have had to change amount of work, bedridden, require extra home care, etc.?
Where is everyone? If 76 million Americans are have chronic pain, why are we not banding together and shouting from the rooftops? Why is it so difficult to find others? Why has the insurance industry continued to throw medication at us instead of supporting alternative therapies?
There are many concerns with opioid and narcotic abuse in chronic pain patients but those concerns are complex. First, are patients addicted or habituated? If you are taking medication as prescribed and then suddenly have to stop, you will have withdrawal because your body is habituated to taking the medication. Some would view that as an addiction. They would be incorrect. An addiction is using medication in a non-prescribed way. One of the largest concerns I hear and read about is the prescribing of narcotics and opioids for patients who then have the medication stolen from them or willingly share their prescriptions with friends or family member. Americans are using 99% of the worlds supply of hydrocodone. That is an awfully high amount. When you look at the data on mortality and addiction, it becomes increasingly stupefying to me that insurance companies continue to pay for these medications and not encourage or pay for alternative therapies.
There are no easy answers for chronic pain and for the prescribing of medications. Nor am I implying that medications should not be given for those who need it. What I am advocating for is that insurance companies, and the medical profession, realize that there are alternative therapies that are helpful to those coping with chronic pain and we should be given every option to decrease our pain and increase our productivity and happiness in this life.
This emphasis on medication leads me to believe that the pharmaceutical industry has a much tighter grip on the insurance companies than most Americans are willing to believe. For instance, my last hospital stay was 8 days. I had a picc line. I was given numerous medications via the picc line. It was never once questioned whether I needed any of those medications or not. However, when I went to see my therapist (every person dealing with chronic pain MUST have a therapist - preferably one trained to deal with chronic pain and its complex issues) I was denied coverage for more than 10 sessions. Basically, the insurance company would rather spend literally thousands of dollars on medication than a thousand dollars for 10 sessions for me? "People with chronic pain are twice as likely to suffer from depression and anxiety as those without. You enjoy your loved ones less, and you are less enjoyable to them. If pain affects body, mind and spirit, then treatment must address these three pillars of the human condition." Clearly, the mental component of chronic pain is an extremely complex one and those suffering need a place to decompress, learn new coping skills, and vent frustration in a safe and constructive way of being forced to live a life different than we had planned.
The statistics in the Time article that I link to are staggering:
76 Million Americans experience chronic pain
Chronic pain costs close to $50 billion dollars a year
45 million Americans suffer from chronic headaches
These figures shock me. I know many many people and there are very few of them who suffer from chronic pain. Either people are not sharing their experience with me or I am staggeringly blind. Both of those scenarios I have trouble accepting. No, I don't think I am some sort of God's gift to those in chronic pain but I know that for me, I had to search to find others struggling with the same issues I was. Even when we were living in Madison WI, I knew few people who were struggling with chronic pain. So that leads me to ask two questions: what constitutes chronic pain and where is everyone?
I don't like the pain scale of 1 - 10 because every person handles and feels pain differently. Not to mention that when you have been in pain as long as I have, your baseline is different. Allow me to explain. On a scale of 1 - 10 of "normal" people, my baseline is a 7. But, if that is my baseline then doesn't a 7 = 0 for me? This scale becomes even messier when I am trying to sort out head pain from back pain. See, I tolerate head pain better than back pain because I have a headache every single second of my life. So, are researchers considering chronic pain people who are in pain (including a 1 or 2) every day of their life without any change in their day to day life or are they restricting that designation for those whose life has been greatly changed due to pain i.e. cannot work or have had to change amount of work, bedridden, require extra home care, etc.?
Where is everyone? If 76 million Americans are have chronic pain, why are we not banding together and shouting from the rooftops? Why is it so difficult to find others? Why has the insurance industry continued to throw medication at us instead of supporting alternative therapies?
There are many concerns with opioid and narcotic abuse in chronic pain patients but those concerns are complex. First, are patients addicted or habituated? If you are taking medication as prescribed and then suddenly have to stop, you will have withdrawal because your body is habituated to taking the medication. Some would view that as an addiction. They would be incorrect. An addiction is using medication in a non-prescribed way. One of the largest concerns I hear and read about is the prescribing of narcotics and opioids for patients who then have the medication stolen from them or willingly share their prescriptions with friends or family member. Americans are using 99% of the worlds supply of hydrocodone. That is an awfully high amount. When you look at the data on mortality and addiction, it becomes increasingly stupefying to me that insurance companies continue to pay for these medications and not encourage or pay for alternative therapies.
There are no easy answers for chronic pain and for the prescribing of medications. Nor am I implying that medications should not be given for those who need it. What I am advocating for is that insurance companies, and the medical profession, realize that there are alternative therapies that are helpful to those coping with chronic pain and we should be given every option to decrease our pain and increase our productivity and happiness in this life.
Tuesday, March 15, 2011
The top 20 List of things I am tired of hearing
I saw a short list on the spoonie site and thought I would personalize the list of things I am sick of hearing. I know that people mean well. I know that they are just trying to help. But seriously, I am tired of hearing the following "helpful" tips:
1. Have you prayed for healing? (yes and the answer I got was "suck it up")
2. Have you googled your illness? (nope. never thought of it)
3. Have you talked to a specialist? (which one? I have many)
4. Are you taking vitamin D? (yes. But maybe if I also apply self tanner I can convince myself I am not sick)
5. Are you sure it is Chiari? (yes, but thanks for doubting numerous neurologists and neurosurgeons)
6. Have you tried the diet for fibromyalgia? (which one - there are hundreds that claim to work)
7. Have you tried different medications? (no. Still taking the exact same ones 9 years later - should I have tried others?????)
8. Have you went to church? (yep. Held the snake too - didn't work)
9. Have you meditated? (yes. Helps keep me from punching you but doesn't seem to stop the pain)
10. Have you tried yoga? (yes. Helps relax me a bit but doesn't end the pain. Perhaps I am doing it wrong)
11. Maybe you are just stressed out. (You think? If only I didn't have chronic pain I wouldn't be stressed out...)
12. Have you tried to get into any trial studies? (I have chiari - they don't make mediation to shrink your brain)
13. You should try hypnosis. (You should walk away quickly before I say something I will regret)
14. Maybe if you lived in a warmer climate. (I will do that as soon as I win the lottery and can have Tim stop working)
15. Have you tried the magnetic bracelets yet? I saw them on television and they really work. (Well if it is on television it must work!)
16. A glass of wine in the evenings would help you sleep. (So would a pint of vodka but my doctor has this thing about my kidneys and liver staying healthy...)
17. Maybe if you tried to do less. (Today my goal was to get breakfast - so I should starve??? Hmm.)
18. Maybe if you lost a few pounds you would feel better. (First, thanks for calling me fat. Second, medications pack on the weight. Third, I would love to exercise but am in constant pain. Fourth, Seriously, thanks for calling me fat.)
19. I will pray for you. (thanks because my praying about it clearly isn't as good as your praying about it)
20. Have you tried feng shui? (yes, and the moving of my bed, bookcases, piano, sofa, and chairs sent my pain through the roof.)
I am sure that everyone has had stupid things said to them but I have to say, you would be amazed at some of the things I hear. I am not joking when I say that the last time I was in the hospital a few weeks ago, a nurse asked me if perhaps a walk around the halls would make me feel better. Seriously? Walking? If only I utilized that to get from place to place instead of the crawling I have been doing. No wonder my hands, knees and elbows are so dry!
1. Have you prayed for healing? (yes and the answer I got was "suck it up")
2. Have you googled your illness? (nope. never thought of it)
3. Have you talked to a specialist? (which one? I have many)
4. Are you taking vitamin D? (yes. But maybe if I also apply self tanner I can convince myself I am not sick)
5. Are you sure it is Chiari? (yes, but thanks for doubting numerous neurologists and neurosurgeons)
6. Have you tried the diet for fibromyalgia? (which one - there are hundreds that claim to work)
7. Have you tried different medications? (no. Still taking the exact same ones 9 years later - should I have tried others?????)
8. Have you went to church? (yep. Held the snake too - didn't work)
9. Have you meditated? (yes. Helps keep me from punching you but doesn't seem to stop the pain)
10. Have you tried yoga? (yes. Helps relax me a bit but doesn't end the pain. Perhaps I am doing it wrong)
11. Maybe you are just stressed out. (You think? If only I didn't have chronic pain I wouldn't be stressed out...)
12. Have you tried to get into any trial studies? (I have chiari - they don't make mediation to shrink your brain)
13. You should try hypnosis. (You should walk away quickly before I say something I will regret)
14. Maybe if you lived in a warmer climate. (I will do that as soon as I win the lottery and can have Tim stop working)
15. Have you tried the magnetic bracelets yet? I saw them on television and they really work. (Well if it is on television it must work!)
16. A glass of wine in the evenings would help you sleep. (So would a pint of vodka but my doctor has this thing about my kidneys and liver staying healthy...)
17. Maybe if you tried to do less. (Today my goal was to get breakfast - so I should starve??? Hmm.)
18. Maybe if you lost a few pounds you would feel better. (First, thanks for calling me fat. Second, medications pack on the weight. Third, I would love to exercise but am in constant pain. Fourth, Seriously, thanks for calling me fat.)
19. I will pray for you. (thanks because my praying about it clearly isn't as good as your praying about it)
20. Have you tried feng shui? (yes, and the moving of my bed, bookcases, piano, sofa, and chairs sent my pain through the roof.)
I am sure that everyone has had stupid things said to them but I have to say, you would be amazed at some of the things I hear. I am not joking when I say that the last time I was in the hospital a few weeks ago, a nurse asked me if perhaps a walk around the halls would make me feel better. Seriously? Walking? If only I utilized that to get from place to place instead of the crawling I have been doing. No wonder my hands, knees and elbows are so dry!
Monday, March 14, 2011
How did I get Chiari?
Many have asked me how I got Chiari. Was I born with it? Is it genetic? Did I pass it to my children? It isn't a story that I particularly like to tell but I think it is an important one nonetheless and am choosing to share just a tiny portion today to clear up any questions that are lingering out there.
Chiari can be acquired either genetically (as they are just discovering families who all suffer from chiari) or it can be sustained as a traumatic brain injury.
I spent my childhood (until age 14) living with my biological father (my biological mother left when I was 18 months old) who felt that beating the crap out of his children and wife (my step-mother) was a perfectly reasonable thing to do. He was sneaky though as I rarely had a mark that could be seen. Smart - literally a genius with an IQ off the charts. I withstood a lot of head injuries and recall times that I blacked out.
I don't want to share more than that at this point. There will be plenty of time in the future to explain everything as the time is right for both me and my children. I feel a need to protect them for awhile longer. They know very little other than that my biological parents were not good people and that I was adopted at age 17 and 3/4. While this blog has been revealing, thankfully, no one is discussing it with my kids and I would appreciate it if no one does. My children know that I am writing this but I have told them that they can read it when they are older. No child needs a mental picture of their mother being beaten until she blacks out causing a brain injury. I suspect that they have put many pieces together and have figured out more than perhaps I want them to.
Both Robert and Mary have undergone neurological testing including multiple MRI's to ensure that they do not have chiari and thankfully they do not. I admit that every time they tell me they have a headache (rarely) my heart rate goes through the roof and my palms sweat as I worry that the MRI's were wrong and they have chiari. I must remind myself that they don't - there is no history of chiari in my biological family nor in Tim's family. As odd as it sounds, I am immensely grateful everyday that my chiari is a result of severe child abuse and that I did not pass it along to my children unknowingly as they were both born before I was diagnosed and would have even had a chance to look at the possible genetic component.
That is how I came to have chiari. Tomorrow we discuss chocolate cake. I have some thoughts... ;)
Chiari can be acquired either genetically (as they are just discovering families who all suffer from chiari) or it can be sustained as a traumatic brain injury.
I spent my childhood (until age 14) living with my biological father (my biological mother left when I was 18 months old) who felt that beating the crap out of his children and wife (my step-mother) was a perfectly reasonable thing to do. He was sneaky though as I rarely had a mark that could be seen. Smart - literally a genius with an IQ off the charts. I withstood a lot of head injuries and recall times that I blacked out.
I don't want to share more than that at this point. There will be plenty of time in the future to explain everything as the time is right for both me and my children. I feel a need to protect them for awhile longer. They know very little other than that my biological parents were not good people and that I was adopted at age 17 and 3/4. While this blog has been revealing, thankfully, no one is discussing it with my kids and I would appreciate it if no one does. My children know that I am writing this but I have told them that they can read it when they are older. No child needs a mental picture of their mother being beaten until she blacks out causing a brain injury. I suspect that they have put many pieces together and have figured out more than perhaps I want them to.
Both Robert and Mary have undergone neurological testing including multiple MRI's to ensure that they do not have chiari and thankfully they do not. I admit that every time they tell me they have a headache (rarely) my heart rate goes through the roof and my palms sweat as I worry that the MRI's were wrong and they have chiari. I must remind myself that they don't - there is no history of chiari in my biological family nor in Tim's family. As odd as it sounds, I am immensely grateful everyday that my chiari is a result of severe child abuse and that I did not pass it along to my children unknowingly as they were both born before I was diagnosed and would have even had a chance to look at the possible genetic component.
That is how I came to have chiari. Tomorrow we discuss chocolate cake. I have some thoughts... ;)
Sunday, March 13, 2011
Up One Day, Down the Next
On Friday, I shared with everyone how happy I was. The joy that life brings me, the art of learning to appreciate yourself and those around you. Excitedly looking ahead to the future and all that it has to offer me. That is what I discussed in the blog on Friday.
I shared hugs and laughter. I took care of my children. Reached out to friends. Grocery shopped and cooked. These are the things I did on Friday.
Saturday was the exact opposite. I sat in pain and was miserable. I couldn't get up and do anything. Making breakfast was too much work. I couldn't get a handle on the pain and ended up going to the Emergency Department. The people were good to me and most were timely. However, once the case became difficult they decided it was time for me to go home. Perhaps it was and I am too angry to see that. Although I find it difficult to justify sending someone home when they are in just as much pain, if not more, than when they arrived because you cannot get an IV in them. I know I am a hard stick. The IV team didn't even want to come look at me though they did. (It is sad when the IV team hears the name "Iversen" and plays rock, paper, scissors to see who has to go play pin the tail on the invisible veins.) They tried repeatedly but I really have no access. My veins are "spidery and small" and "peripheral" so it isn't worth it to bring me pain relief. It is too much work.
This is the kind of invisibility that I am talking about when living with chronic pain. The hospital sends me home without hesitation because I am "just in pain" yet the same hospital would never send me home if I had a cardiac or renal issue. Some might read that and say, "Yes but those will kill you and chronic pain won't". Actually chronic pain kills people everyday but it is attributed to something else: suicide, liver failure, kidney failure, myocardial infarction. Chronic pain causes stress levels to be extremely high which leads to higher mortality rates. Setting all that aside, isn't the point of medicine to make life better? When did we become a society that is okay with people being in pain because it isn't life threatening? Why is the quality of my life less important than the fact that I am alive?
The juxtaposition of emotions of Friday and Saturday makes me feel like I have a split personality. I believe that often happens with those of us in chronic pain. The good days or good moments actually feel like a different person has inhabited your usually painful and frustrated body. I almost want to give the momentarily pain free (anything below a 5 on the pain scale is pain free in my standards) me a new name as it feels like such a different person. However, I know we are one - the snarkiness binds us. I am grateful for the periods of time when the pain is so easily manageable and I can get out and do things. Still, it is a bit unnerving to be living between such vastly different perspectives.
Unfortunately or ironically depending on your perspective, we went for years never having any meds that worked. Now, we have meds that work to bring my pain down but can't get those medications to me in acute episodes because I have no IV access. I can't seem to catch a break. I am determined to MAKE a break for myself and advocate fiercely that they should put a port in which would allow me to have the access needed for medication and blood draws.
I am not giving up but will admit that Saturday I was defeated. Thankfully, today I can choose to put aside the anger and continue moving forward or harness it and create change in how we deal with and view pain. Not sure yet which I need to do. I think it may be a combination dance of anger, advocacy, acceptance, snark, and love....just my specialty.
I shared hugs and laughter. I took care of my children. Reached out to friends. Grocery shopped and cooked. These are the things I did on Friday.
Saturday was the exact opposite. I sat in pain and was miserable. I couldn't get up and do anything. Making breakfast was too much work. I couldn't get a handle on the pain and ended up going to the Emergency Department. The people were good to me and most were timely. However, once the case became difficult they decided it was time for me to go home. Perhaps it was and I am too angry to see that. Although I find it difficult to justify sending someone home when they are in just as much pain, if not more, than when they arrived because you cannot get an IV in them. I know I am a hard stick. The IV team didn't even want to come look at me though they did. (It is sad when the IV team hears the name "Iversen" and plays rock, paper, scissors to see who has to go play pin the tail on the invisible veins.) They tried repeatedly but I really have no access. My veins are "spidery and small" and "peripheral" so it isn't worth it to bring me pain relief. It is too much work.
This is the kind of invisibility that I am talking about when living with chronic pain. The hospital sends me home without hesitation because I am "just in pain" yet the same hospital would never send me home if I had a cardiac or renal issue. Some might read that and say, "Yes but those will kill you and chronic pain won't". Actually chronic pain kills people everyday but it is attributed to something else: suicide, liver failure, kidney failure, myocardial infarction. Chronic pain causes stress levels to be extremely high which leads to higher mortality rates. Setting all that aside, isn't the point of medicine to make life better? When did we become a society that is okay with people being in pain because it isn't life threatening? Why is the quality of my life less important than the fact that I am alive?
The juxtaposition of emotions of Friday and Saturday makes me feel like I have a split personality. I believe that often happens with those of us in chronic pain. The good days or good moments actually feel like a different person has inhabited your usually painful and frustrated body. I almost want to give the momentarily pain free (anything below a 5 on the pain scale is pain free in my standards) me a new name as it feels like such a different person. However, I know we are one - the snarkiness binds us. I am grateful for the periods of time when the pain is so easily manageable and I can get out and do things. Still, it is a bit unnerving to be living between such vastly different perspectives.
Unfortunately or ironically depending on your perspective, we went for years never having any meds that worked. Now, we have meds that work to bring my pain down but can't get those medications to me in acute episodes because I have no IV access. I can't seem to catch a break. I am determined to MAKE a break for myself and advocate fiercely that they should put a port in which would allow me to have the access needed for medication and blood draws.
I am not giving up but will admit that Saturday I was defeated. Thankfully, today I can choose to put aside the anger and continue moving forward or harness it and create change in how we deal with and view pain. Not sure yet which I need to do. I think it may be a combination dance of anger, advocacy, acceptance, snark, and love....just my specialty.
Thursday, March 10, 2011
It's my birthday
For 36 years and 364 days I dreaded my birthday. I hated it. But this year, that changed.
See, my biological mother left when I was 18 months old. My biological father was physically, emotionally, and sexually abusive. Foster parents were unkind and uninterested in me - I was but a monthly paycheck. Every year, I would wonder what the point of celebrating a day was when the people who brought me into this world didn't want me and their abuse left me with the physical issues that I have now.
My Mom who adopted me at 18 (we are so alike it is scary) told me year after year that it was a day to celebrate what joy I brought to others. To celebrate the life I was living despite obstacles. It was a day that she treasured because without that day, I would not be here and she would not have me.
I fought against her reasoning for years. I never saw anything special in what I had to offer. I know lots of kind, funny, loving people and I never saw what made me special. Especially once I was diagnosed with chiari, I had even more difficulty finding a point to my life. There were so many things I could not do - I couldn't be the Mom, friend, and wife that I thought I should be. I dreaded this day every year until now.
As I have examined my chronic pain, my life, my relationships and made evaluations of those things over the last 8 years, I have come to appreciate the wonder that I am. No, I don't believe that I am some sort of super woman who should be worshipped (well, maybe once in awhile) but I have come to see the amazingly resilient person I am. I fought against all the odds - went to college, never had a drug or alcohol problem, had children and stopped the cycle of abuse, have been married for 16 and 1/2 years. I might not receive paychecks or have a great job title but what I do for others, the love I offer to others, and the loyalty I give to my friends and family has worth. My life and what I have to offer others is enriched because of the obstacles I have overcome. What I offer to others is my unique perspective. It is snarky, funny, loving, kind, loyal, dependable, joyful, and honest.
So, on this, my birthday, I celebrate my life. I celebrate the amazing people who make my life worth living and who fill my days with wonder, joy, and love.
See, my biological mother left when I was 18 months old. My biological father was physically, emotionally, and sexually abusive. Foster parents were unkind and uninterested in me - I was but a monthly paycheck. Every year, I would wonder what the point of celebrating a day was when the people who brought me into this world didn't want me and their abuse left me with the physical issues that I have now.
My Mom who adopted me at 18 (we are so alike it is scary) told me year after year that it was a day to celebrate what joy I brought to others. To celebrate the life I was living despite obstacles. It was a day that she treasured because without that day, I would not be here and she would not have me.
I fought against her reasoning for years. I never saw anything special in what I had to offer. I know lots of kind, funny, loving people and I never saw what made me special. Especially once I was diagnosed with chiari, I had even more difficulty finding a point to my life. There were so many things I could not do - I couldn't be the Mom, friend, and wife that I thought I should be. I dreaded this day every year until now.
As I have examined my chronic pain, my life, my relationships and made evaluations of those things over the last 8 years, I have come to appreciate the wonder that I am. No, I don't believe that I am some sort of super woman who should be worshipped (well, maybe once in awhile) but I have come to see the amazingly resilient person I am. I fought against all the odds - went to college, never had a drug or alcohol problem, had children and stopped the cycle of abuse, have been married for 16 and 1/2 years. I might not receive paychecks or have a great job title but what I do for others, the love I offer to others, and the loyalty I give to my friends and family has worth. My life and what I have to offer others is enriched because of the obstacles I have overcome. What I offer to others is my unique perspective. It is snarky, funny, loving, kind, loyal, dependable, joyful, and honest.
Tuesday, March 8, 2011
Coping because you have no other choice
I leaned over the dishwasher to retrieve some spoons and my glasses immediately fogged up impeding my view of anything. I said to Tim, "I don't know how you deal with having glasses! [I just started wearing them last July] Doesn't it drive you crazy?" He responded that you learn to cope when you have no other options.
How true.
It immediately hit me that this needed to be a blog posting. Many have said to me, "how do you cope" and I have said over and over that you don't have a choice - you either cope or die. It is a choice between living happily, living in bed or literally dying.
There are many who would go crazy with the doctors appointments, the hands not working like they are supposed to, the hair falling out, the inability to recall words, the constant pain, the numerous medications and strict adherence to a schedule for them, the days that you are stuck in bed. Yes, many would not be able to cope with that life. But, what choice do you really have?
Coping for me is not an option. I don't have the luxury of saying that I can't cope. I either cope or I die. While that might sound dramatic, I don't mean it to - it is simply reality. If I cannot cope with the pain and limitations of my life, then the depression will swallow me and I will end up committing suicide as so many living with chronic pain have done.
That is not an option for me.
So, I choose to keep going. I choose to volunteer. I have to remind Tim and those who love me to let me keep going even when I am in pain and they want me to sit down because sometimes I need to feel useful more than I need to cope with the pain.
It takes a great deal of work to learn coping skills and to apply them. Sadly I learned many of mine through a very horrific childhood. However, I have added many coping skills to my bag of tricks by having a great therapist, learning the importance of breathing, and doing my best to be educated on my illness. A large part of coping is accepting the choices we are given and the choices we make. Sometimes we are given crappy choices such as lying in bed or lying on the sofa. It is in the subtlety of that decision that my coping shines through. I choose the bed because both my kids and I can fit on it and we can have a picnic supper. It doesn't mean that I don't wish for different choices but wishing doesn't make it happen and focusing on what I don't have keeps me from coping and accepting what I do have.
Thankfully, I have a great husband, wonderful kids, and amazing friends who make my coping easier. While it is something I have to do, you have all chosen to take the journey with me and that has made all the difference.
How true.
It immediately hit me that this needed to be a blog posting. Many have said to me, "how do you cope" and I have said over and over that you don't have a choice - you either cope or die. It is a choice between living happily, living in bed or literally dying.
There are many who would go crazy with the doctors appointments, the hands not working like they are supposed to, the hair falling out, the inability to recall words, the constant pain, the numerous medications and strict adherence to a schedule for them, the days that you are stuck in bed. Yes, many would not be able to cope with that life. But, what choice do you really have?
Coping for me is not an option. I don't have the luxury of saying that I can't cope. I either cope or I die. While that might sound dramatic, I don't mean it to - it is simply reality. If I cannot cope with the pain and limitations of my life, then the depression will swallow me and I will end up committing suicide as so many living with chronic pain have done.
That is not an option for me.
So, I choose to keep going. I choose to volunteer. I have to remind Tim and those who love me to let me keep going even when I am in pain and they want me to sit down because sometimes I need to feel useful more than I need to cope with the pain.
It takes a great deal of work to learn coping skills and to apply them. Sadly I learned many of mine through a very horrific childhood. However, I have added many coping skills to my bag of tricks by having a great therapist, learning the importance of breathing, and doing my best to be educated on my illness. A large part of coping is accepting the choices we are given and the choices we make. Sometimes we are given crappy choices such as lying in bed or lying on the sofa. It is in the subtlety of that decision that my coping shines through. I choose the bed because both my kids and I can fit on it and we can have a picnic supper. It doesn't mean that I don't wish for different choices but wishing doesn't make it happen and focusing on what I don't have keeps me from coping and accepting what I do have.
Thankfully, I have a great husband, wonderful kids, and amazing friends who make my coping easier. While it is something I have to do, you have all chosen to take the journey with me and that has made all the difference.
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