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.

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

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.

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.

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.

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

Determination is like a Frog

Determination is like a frog in my life.  Once I have it in my hands, I can keep it there for awhile.  It might pee on me but it isn't anything that a little soap and water can't fix.  However, when I am needing determination and am lunging towards it, it constantly evades me.  Hopping faster away from me that I can chase.

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...

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.

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.

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.

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.

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!

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... ;)

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.

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.

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.

Snowed In

We have over two feet of snow. No joke.  And, it is still snowing.  A lot.
I was supposed to be working on a dinner for 200+ people for a jazz band fundraiser for tomorrow night.  I cannot get out of my driveway to go work on the food nor have they even plowed my road yet.  Not to mention that the storm has made every molecule in my body achy.  Tim is stressed as he had to cancel a rehearsal last night due to the storm and is losing a rehearsal today due to no school.  Kids are grumpy because they were playing with the shovels last week, didn't put them away and now they are lost under 2 feet of snow.  I made them go outside to try and find them.  Part of me would like to point out to my wonderful family that at least they are not dealing with all this while aching like a melon farmer!  However, that isn't helpful so I am keeping my mouth shut.

If it continues to snow I am going to start drinking.  Feel free to join me if you can snowshoe over here.

So, the blog today is, NO MORE SNOW PLEASE!  At least until November.  Then I will be ready again.

Our regularly schedule programming will continue tomorrow.

Amazing adaptive skills and some organizational tips

Nothing forces one to become a contortionist quite like being in constant pain.  It also demands organization.  There are numerous doctor appointments to get to, reiki, yoga, meditation, medication to take, insurance forms to fill out etc. etc.  So here are a list of my skills and organizational tips to help you get through a painful day.

1. It is much too painful at times to bend over so I have learned to pick things up with my feet.  A dropped spoon in the kitchen?  Grab the counter, hold on, pick up spoon with toes, raise as high as you can and grab the spoon with one hand - making sure to NOT let go of the counter with the other hand.  Wash the spoon off and continue.

2. I carry a bag around the house that has a phone, planner, kleenex, water bottle, hand lotion, ipod, kindle, sudoku and granola bar or snack.  I find that there are times when I am home alone and it is all I can do to go sit on the sofa in the family room.  We live in a split level and going up and down the stairs can quickly exhaust me or lead to falls on a bad day.  I have learned to plan ahead and keep things with me.  I find that I can survive with my bag until my family gets home and can help me get up the stairs or fetch me something I forgot.

3.  I stock the bathroom.  I love going to friends homes and seeing their bathrooms so neat and clean. You enter mine and you see magazines, a blanket and toilet paper.  Here is why: I am often nauseous and cold.  Thus, if I am stuck in the bathroom I have reading materials, a blanket to wrap around myself and t.p. for, well, you know.  Don't worry - I wash the blanket often!

4. I keep ALL of my medication in one bag.  This keeps me from having to wander the house wondering where I last took it.  Memory issues often accompany chronic pain (Mom - you are old, it isn't chronic pain).  I also don't have to worry about little fingers - though my kids are old enough now to understand I still recognize the potency of my medication and take the responsibility for it very seriously.

5.  When I feel good - I do something!  Sometimes that means we have to make last minute family changes but good days are not to be squandered or assumed so we do whatever we can to enjoy them.

6. I have a collapsable cane.  It costs a little bit more but it is worth it!  There are days when I start the day in pain and then feel better later and vice versa.  It isn't good to use a cane when you don't need one as it adds strain to your shoulder so to be able to fold it up and put it away when I don't need it is awesome!

7.  I make a LOT of lists.  Memory issues are a part of chiari as well as chronic pain.  I find that lists not only help me to remember and accomplish things but also help me to plan accordingly when I am out and about.  Also keep post it notes available.  I keep them beside my bed, in the kitchen and in my bag.

8.  On days you feel like making dinner, make a double batch.  It doesn't take that much more time and you can freeze it for the bad days.

9.  In dealing with insurance companies, always write down the person you spoke with and the time and date you spoke with them.  This has helped me more than once in dealing with billing issues.  I keep a log in a file just for my medical stuff.  The rest of the family shares a file - I am special.

10. Breathe.  When everything is becoming overwhelming, go into a room alone and spend 3 minutes focusing on breathing deeply in and out.  I promise that while it won't make the pain go away, stop the kids from arguing, get dinner made, or cause the dog to stop being a pain in the butt - it does help cope.  Breathing is underrated and an important tool.

Love and other drugs...

We watched the movie "Love and Other Drugs" based off of the great reviews we had heard and the plot summary from IMBD.
The plot summary from IMDB:
Maggie (Hathaway) is an alluring free spirit who won't let anyone - or anything - tie her down. But she meets her match in Jamie (Gyllenhaal), whose relentless and nearly infallible charm serve him well with the ladies and in the cutthroat world of pharmaceutical sales. Maggie and Jamie's evolving relationship takes them both by surprise, as they find themselves under the influence of the ultimate drug: love.


Sounds great, right?  Cute, funny, sexy - a nice "date night" movie.  Wrong.  Hathaway has Parkinson's and together they deal with many emotions - anger, helplessness, fear, frustration.  They tackle the big questions that so many of us with chronic illnesses face: What is going to happen when you have to take care of me?  Will you want to?  What if you get tired of it?  What if you leave?  It isn't fair and I want you to be happy so leave now.  I am not worthy in this messed up body to have such a great person give up so much to be with me.


Safe to say, we were both crying at the end but for different reasons.  See, I only see this through the perspective of the person with the illness.  I often wonder if Tim would be better off having a wife who can run around as much as him and do all the things he can - play tennis, play squash, go from 7 a.m. until 2 a.m., attend concerts without getting a headache because it is so much noise, have a partner who cooks more and does more chores so that he can just focus on his music and craft.  I worry about how different his life will be as we look towards the future.  It has been brought up repeatedly that I should get a wheelchair for the really bad days so that I can get out of the house but I keep refusing because all I see is how awful it will be for him to have to help me in and out, pack it in and out of the car.  Will he be embarrassed?  Will it be a hassle  for him to maneuver around people?  Is it worth the hassle or should I just stay home on those super bad days like I have been doing?


Tim was thinking about how awful it was that I have a body that doesn't do what I want.  How frustrating it is that I have an active brain stuffed into this body that doesn't allow it to be used to it's potential.  How unfair it is that I live each moment in massive pain.  He thinks about the things he should do around the house to make my really bad times easier - like a bathroom totally tiled with a drain in the floor so I can shower without having to step over the tub.  He thinks about what he can do to help because we have a split level.  Will we eventually have to move into a ranch or can he somehow make our home work?


Chronic pain doesn't just affect the person who lives in pain.  It affects the partner and it completely changes the dynamics of the relationship.  It places a burden on Tim to stay in as good of shape as he possibly can (with an extremely demanding work schedule where he is already leaving to be at the school by 7 and often not home until 10) so that if I fall or need carried he can do it.  He has to worry about every doctor visit and every new medication.  Tim and I now think about what if I need a kidney or liver later on due to the medications I have had to be on for pain relief and to function.  What will we do?
  
Dealing with chronic pain changes the worries that I have - will my children and husband be embarrassed by my cane?  Are they embarrassed at how slow I move?  I know it drives the kids nuts to walk so slowly.  I then feel guilty and think that they deserve a Mom who can keep up with them.  I feel so sad that they don't remember when they were young and I had no trouble keeping up with them - running all over the place.  When they think of me do they just think of the things I cannot do? 


These are the emotions we both keep under the surface, safely tucked away under the comforter - the duvet looks beautiful but pull back the comforter and you see the sadness, anger, frustration, hopelessness, helplessness, and fear.  Thankfully, we tackle these emotions together and love each other through it.

Are you married to a Spoonie? Here are the top 10 ways you'll know:

1.  You understand that many medications cause constipation and you high five each other when you finally poop
2.  Watching your partner give themselves a shot doesn't make you squeamish
3.  Your hair falls out at the same rate
4.  You don't mind being woken up at 3 a.m. to help get the medicine bottle open
5.  You know every staff member by name at the doctors office
6.  You learn which vending machines have the best food at your hospital and you remember to bring quarters
7.  You know it is a good day when you come home and see your partner has changed jammies
8.  You can purchase stool softener, morphine, and chocolate at the same time
9.  You laugh through the tremors and make jokes about who swapped the regular glass for the dribble one

10.  When you have the talk about getting the wheelchair you need, you know that the races are just around the corner...and you better have a helmet. :)

Taking the Day Off

Dear Friends,

I have a bunch of volunteering duties on my plate at the minute so I am taking the day off from my blog.  I am working on a great story with lots of information and statistics as well as a list of tips for coping with chronic pain and invisible illnesses.

Thanks for understanding and I look forward to seeing you all tomorrow!!

Zip

Tribute to my Doctor

I debated writing this piece for awhile as I didn't want to brag about how good I have it regarding my doctor when I know so many are struggling.  However I want to honor someone who has so dramatically changed the care I have received and the outcome of my health.  I also want to remind those struggling that there are amazing doctors out there - you just need to keep looking.

One of the most difficult aspects of dealing with chronic pain is having doctors who don't understand.  I have heard so many horror stories from patients whose doctors not only lacked compassion but they also lacked the knowledge required to treat chronic pain.  In my lifetime, I have had experience with those doctors.  However, that all changed in October 2005.

I remember the first time I met her.  I was working as a nurses aide in the ICU as I was in nursing school at the time.  There was a patient there who I had become attached to.  I always talked to him whether he was awake or not, alert or in a comatose state which sadly, he often was.  His case was extensive and his body failing him.  His wife was such a sweetheart and she clearly loved him deeply.  Anyway, Dr. B had come in on a Sunday to see him and visit with him.  I happened to be at his room when she came in and I spoke with her briefly before she entered his room.
I was immediately struck by the fact that Dr. B was listening to me - actively and genuinely listening to an aide talk about her patient.  I was also shocked when she asked to be called by her first name.  In my experience, the only doctors that choose to be called by their first names are those who don't have a God complex.  Thus, there are few.  Ironically, they are all doctors who (mostly) are working in palliative care or chronic pain.  Perhaps it is they who realize best that medicine is an art, not a science, and that all the degrees in the world cannot stop suffering and death.

Anyway, I was currently searching for a gp as I had only been in the area for a few months and asked if her practice was open and she said it was.  I saw her just a few weeks later and my life has not been the same since.

It had only been 5 months that she had been my doctor when my life began to spiral out of control.  Being in nursing school and working full time had been taking a toll on my body and my mind finally could not fend off the pain.  I suppose it didn't help that I was only a year and a half out of having my first brain surgery and I had stubbornly refused to take enough time off to heal from it.  I knew what the risks were when I decided to go to nursing school but I wanted it so badly.  I knew that I had a unique perspective coupled with massive amounts of compassion and tenacity that would allow me to really make a difference for my patients.  However, my body couldn't take it.  The headaches were beyond out of control and had been for months.  The other symptoms of chiari were also intense and I couldn't deny them any longer.  I had tried for over a year to not have chiari.  I somehow thought that if I could just will it away or ignore it I could continue my life as planned.  I was wrong.

I was immensely depressed and had gone to Ohio to be with family as my life was crumbling before my eyes.  A family member suggested that I call my doctor at home (it was a Sunday) and share with her how dire the situation was.  I couldn't fathom calling a doctor at home and I assumed she was unlisted.  I was wrong - on both counts.  Not only did she talk with me that night for over an hour, we came up with a plan, called prescriptions in and over the next month that I remained in Ohio, we had numerous phone conversations.  She didn't bill insurance for this.  She didn't ask about being compensated for her time.  All she truly cared about was that I was getting a little pain relief and that I was not suicidal as I had been and was receiving the help I needed to cope with such massive life changes.

Since 2005, She has come to my aid many times.  She has changed her schedule, found openings for me when no one else could, given up sleep, driven to my home on a couple occasions and dramatically changed the life of myself and my family.  There are extremely few people in my life that I trust completely and she is one of them.  She inspires me to continue on bad days, comforts me when I am losing it, and truly cares about my health - in all its forms.  How am I doing as a Mom?  Wife?  Friend?  Those questions are important to her as she has such an amazing grasp on how chronic pain affects every aspect of our life and the lives of those who love us.

She acknowledges when something is out of her comfort zone and never hesitates to consult with another doctor.  This willingness to seek answers from colleagues has led to me meeting the best pain doctors and amazing neurologists and neurosurgeons who have also changed my life for the better.  The tenacity with which she controls my medication has kept my liver functioning when other doctors would have just continued to throw medications at a problem whether the issues were resolving or not.  I see it in many patients of chronic pain.  The doctors prescribe medication, the patients take it and whether it gets better or not, they continue to run on this wheel of prescribing medication, taking medication, damaging liver, still being in pain and back to the beginning for more and/or different medication.

Her gift to me of advocacy is one that I will never be able to repay and her time with me is truly invaluable.  There is no amount of money that I could ever give her that would pay for her compassion, knowledge, and fierce advocacy.  She is a large part of why I want to get my MS in public health and change the way we deal with chronic and invisible illnesses.  Her tireless advocacy inspires me and reminds me that one person can change the world - at least the world of another.

My doctor is my advocate, my guardian, and my friend.  I am honored and humbled to be her patient.

I used to be skinny...

Every person I know who has chronic pain is struggling with their weight.  Many of the medications used to deal with chronic pain have weight gain as a side effect.  Not to mention, being in constant pain does not lend itself well it to exercising.

This has a horrible effect on our self-esteem which is usually fragile to begin with as we have lost so much of ourselves in the pain cycles.  We can eat so carefully and sometimes dangerously few calories and yet the weight continues to pile on thanks to medications.  Shopping becomes worse than doctors appointments as there are few plus size "designers" who do more than put a trash bag over you.  Not to mention that the plus size options are so limited in stores.
Many who deal with chronic pain cannot handle anything tight or remotely form fitting so I know many of us end up wearing large, baggy t-shirts and sweatshirts with baggy cotton yoga pants.  While that is great for around the house, when you do feel well enough to go out - there are few options and you usually end up leaving the house feeling like you are wearing a horrible cotton mumu.

I find that when my pain is intense, I don't eat as healthy as I should.  I crave carbs - pasta, breads, cakes, cookies, oatmeal, rice.  I don't long for salads and healthy soups.  I want comfort food as I want to be comforted from the pain and the last two months have been brutal.  Since my journey began when I was diagnosed with chiari in October of 2003, I have gained almost 100 pounds when I was at my heaviest last January.

So, today (despite Sunday's post) I am getting back on the wagon.  Last year, I lost 36 pounds before August 1st and kept it off.  It was through sheer determination and careful eating as I don't really exercise.  I mean, I clean the house, do laundry, take care of the kids, dog, husband, and volunteer which keeps me busy but these are not cardiovascular activities.  I do yoga but not on a regular schedule.  So, since I have been disciplined about the blog, I can be disciplined about yoga and eating healthy.  I have gained 7 pounds back since being admitted to the hospital on 2/11 due to a new medication whose most prominent side effect is weight gain. UGH.  And, I have been eating comfort food.  (It is called that for a reason!)

My goal for this year is to lose 36 pounds before July 1st.  Which if I attain this goal, I will have lost more than half of what I have gained over the last 8 years in less than 2 years!

I am sharing all of this with you for a couple of reasons.
1. It is an issue that most people dealing with chronic pain face.
2. I am hoping that you can help me stay on the wagon.

When you have an invisible illness you lose so much of yourself: career, physical abilities, metal abilities, friends, family, and your physical self changes.  I miss my old self and while I cannot have it back (I will never be running again with my husband) I can try to lose a few more pounds and feel better about myself.  It will be extremely difficult as I cannot stop my medication so I will need to be strict with my diet and yoga but I know that it will be good for me.  The body won't have to lug around as much weight and I will be happier fitting into clothing that I like.  Most importantly, it will be something that I took back from the chronic pain...it might still be the dictator of how I feel but not how I look!