Oscar Re-Cap

When you are in constant pain, you look for distractions.  One of my favorite distractions is an excellent movie.  Tim and I began having Oscar parties 12 years ago.  Everyone would dress up either as an actor or character who were nominated in movies that year and we would serve amazing food and drink.  We had everyone fill out ballots and Oscar awards were given to the best dressed as well as the person who chose the most winners.  Laura has 4 Oscars I believe.  Despite surgeries, bad days, bad weeks and difficult years, we remained strong in this tradition.  However, this year the tradition was broken and I admit to being crushed.

So, staying positive and active, I gave a running commentary on facebook about the red carpet.  I can't say that I was completely unbiased but I can say that showing nipples to me doesn't make me like the dress more or less.  Here is a brief summary of my opinions of the red carpet couture:
Mila Kunis was beautiful but left nothing to the imagination.
Natalie Portman was underwhelming.  (though she is an amazing actress)
Jennifer Hudson looked amazing.
Halle Berry looked emaciated.
Sandra Bullock was gorgeous.
Nicole Kidman needed to give back the curtains.
Helen Mirren's jewelry was amazing and I am obsessed with her necklace.  I think she always looks classy.
Christian Bale needs to stop trying to grow a ZZ Topp beard.


Sometimes you have to make the best of a sad or difficult situation.  The good news is that my friends were laughing online with me.  Who knows, maybe E! will ask me to host the red carpet next year and give commentary.  Regardless of my fame, I will be having an amazing Oscar party next year and bringing back our traditions because chiari can't win....it can't even be nominated :)

Chocolate cake trophy

I have become aware that I have an addiction.  I have been told the first step is to acknowledge it.  The second is to feed the addiction (I admit that information on the internet may be unreliable...oh well) - which is where all of you come in.

I am having a contest.  Whoever makes me the best chocolate cake before April 15th will win a prize.  It will be a great prize too!

Here are the rules:
1. You may not deliver a whole cake.  It took me a long time to lose 36 pounds last year and I refuse to put it all back on.  Since Tim is diabetic and cannot have cake, it forces (hehe) me to eat the cake for it cannot go to waste.  I believe that is one of the ten commandments....  I digress.
2. You must make the cake yourself.  The exception to this rule is for you go to Magnolia Bakery in Grand Central Station and bring me a chocolate cake with chocolate buttercream frosting.  There will be an extra prize if that happens.
3. You must have fun doing this.  Baking should be fun, involve a mess, and in my house: children.
4. You must fold joy and happiness into the cake.
5. Cupcakes are acceptable.
6. It may not contain walnuts or pecans.

I admit that this idea came to me after the Green Family brought me a chocolate cake that at this moment is the best I have ever had.  So far, the prize is hers but I am sure there will be a challenge or two :)

The Darkside of Chronic Pain

I am not forcing anyone to read this and want to warn that this is a rare and intense post.  But if you choose to read on, you will have a glimpse into times of agony in my life and a much deeper understanding of chronic pain  that most suffering will not share. It is the side of chronic pain that kills a spirit.   The following writing shows my weaknesses and vulnerabilities.  My anger and frustration.  The defeat one feels by living with a dictator.

This is the side of pain that I talk about briefly in my blogs but don't want to dwell on because 1. who wants to read about such horrible things and 2. dwelling on them is toxic to me.  However, if I am going to be honest about invisible illnesses and chronic pain and the struggles that we face, this is part of it: the anger, helplessness, hopelessness, and solitude of the journey.  The reality of an invisible illness.

To walk into my house and look at me - you would assume that I might be tired and in need of a shower (both are true) but you would have no clue that I am in massive pain and exhausted beyond words.  You would not be able to see the anger and bitterness below the surface, lurking behind my smile. Years of masking the pain from those around me has made me the master.

The following are the emotions you will not see on a Lyrica or Cymbalta commercial and yet these are the emotions that are so toxic to those living with them if we don't deal with them.

Solitude:
It is 3:15 a.m.  I talk to myself, muttering under my breath, how angry I am that Tim is sleeping.  Much of what I say is repetitive and probably doesn't completely make sense.  Pain stops my ability to think clearly and explain myself.  How unfair.  Do I really wish he were awake?  No.  However, I do wish to not be overwhelmed with pain and loneliness.  Nothing soothes the pain.  There are moments when the loving, light touch of someone brings momentary relief but ultimately I find myself getting angry that they have a life and I don't.
I find myself judging others.  Unfairly.  Wrongly.  But, nonetheless angry that they have lives to live and things to do and choices to make and my choices are made for me by some random dictator of pain.  I see people who are overweight wasting time when they could be working out and my anger and bitterness flares.  I used to be thin and the medication and years of bedrest has taken that all from me.  I now feel like a fat unattractive blob who people (like me) judge unfairly and assume I am some lazy slob who just eats fast food.  Couldn't be farther from the truth.

Bitterness:
I see parents who are ignoring their children in order to satisfy their own needs. I don't mean occasionally or for sanity's sake, I mean the parents who are jetting off to vacations or who eat out nightly while their children are at home either fending for themselves or having a nanny care for them and I become irate.  I WANT to be cooking for and playing with my children.  I want to go hiking with my son and build snowmen with my daughter.  More than any other part of living with chiari, this is the most sensitive - the robbing me of my parenting joy.  We have adapted but that isn't what I want.  I don't want adaptive parenting - I want "normal" parenting.  I miss out on attending my children's events.  Nothing would bring me more joy or happiness than to be the parent cheering on Mary at every swim meet or applauding loudly after the kids' concerts.  I would be honored to attend Boy Scout ceremonies.  However, I am often in severe pain or absolutely exhausted.

Anger:
I see couples out to dinner and I long for Tim and I to have a dinner out.  It isn't that he doesn't try but with his busy schedule we get one shot at going and if it is a bad day or evening, I cannot go and our chance to be together is lost.  It is so unfair to him.  He has a partner who loves him completely and whole heartedly but whose body is led by an irate, unfair dictator deciding when and where and how I will feel.  Ignoring the scheduling and efforts we put into taking a night for ourselves.

It is important to me that everyone to know that things are getting better.  2010 was the first year since 2005 that I was out of bed more than in it.  I joined the PTO as the fundraising chair and took on other volunteering.  There were moments, weeks even, when I felt "normal" (which for me meant being out of bed 4 or more days a week).  However, as wonderful as that is, I have now spent the last two months fighting again.  Struggling to overcome pain and begging for sleep.  It will get better - I have a team of doctors and supporters who are determined to make sure that I get to live all my hopes and dreams.  They support the fact that I want to get my MS in Public Health and change the way that we deal with chronic pain and invisible illness patients.  There is much that we could do to make lives better, easier and more pain free. However, we need someone willing to focus on that and I am that person.  I am tenacious, determined, loud but (usually) polite, and unstoppable.

It comes down to choices and what we do with the choices we have.  I find myself angry when I see others squandering their choices.  So many people who are healthy are living as if they have dictators standing over them and they don't.  Trust me. I know what a dictator looks like.

Invisible illnesses are exactly that: ruthless, irate, unfair dictators who determine our fates on a whim.  Ignoring our hopes, dreams, and needs.  Sending us on month long journeys of horrific pain and torture.  Weeks without sleep only to bounce back, become hopeful again, allowing ourselves to live and then be struck back down by the dictator of pain.  Normalcy just out of our grasp.

Thankfully I am from Wisconsin and can overthrow a dictator. :)  I recognize the darkness that accompanies chronic pain and I have a great team of doctors and supporters helping me take back my body, spirit, and mind.  It is a long, slow, journey but with great friends and a wonderful family there is hope and determination.  Nothing stops a dictator quite like constant hope and determination with a side of sarcasm and laughter.

**If you are finding yourself overcome by the bitterness, isolation, and anger that accompanies chronic pain - please reach out and seek help.  Call your hospital, doctor, therapist, friend and let someone know.  There is hope and I promise that those emotions don't have to control or consume you.  You can overthrow the dictator, you just need a little help.**

Learning to stab yourself

One of the challenges that I have had to face is learning to give myself shots.  If they were of the tequila variety, I would be queen of shots and would have won an award by now.  Unfortunately, this variety requires a needle.  A long needle that goes right into the muscle.  It isn't that I mind getting the shots or watching the needle enter my skin, it is the moment right before it breaks the skin that I can't handle.  Knowing it will hurt and then burn (ketorolac burns like a #@%!).

I have never been squeemish about blood, guts, wounds, stitches - I love it.  The gorier the better.  Give me an autopsy show or a surgery to watch and I am in heaven.  I would have loved to have watched the surgeries I have had on myself (my neurosurgeon in Madison wouldn't let me tape it - I asked).  It is that moment before the needle enters that I keep getting stuck on.

I could give a shot to anyone and I have no hesitation in the second before it breaks their skin.  Yet on myself - I become stuck.  Frozen with the syringe in hand, unable to pop it into the skin and inject the medicine.

It is quite ridiculous when you think about it.  Most people faint because of blood or fear of pain.  Those things don't stop me - the idea of the initial entering if the skin - hearing that little pop (you must be quiet and in a quiet room to hear it) just freezes me in my tracks.

SO, if you have any suggestions on how to get over that hurdle, let me know.  If you need me to give you a shot, let me know.  If you have any great videos of surgeries, let me know.  The body is amazing - both in and out - just as long as you can get over the initial "pop".

Distraction in the form of Cards

Distraction is an important part of learning to live with chronic pain.  Medication and meditation only go so far.  One needs the complete involvement of heart, mind, and soul connecting with others to be distracted.  For me, that distraction is card games.  I love them: euchre, poker, 500, hand and foot, hearts, bridge, phase 10... Pretty much all card games.  I love that you need a strategy and yet there is also luck involved.  The interactions, the teams, the mental telepathy you use so your teammate will call the right trump.  I admit it - I am a card junkie.

I learned to play poker in New Orleans with our best friends Tom and Laura.  We used skittles as "chips" and not only played for hours but some of us kept eating our profits thus we purchased all the skittles in the vending machine and Tim had to run to a corner store to purchase more.  The laughter was non-stop and aside from the amazing music and delicious food of New Orleans - it is my most treasured memory from that vacation.

Tim and I learned to play bridge from our friends Rick and Kim.  The most famous of all the hands we played was the one in which Tim had a once in a lifetime hand.  Kim told him "It was a no-brainer but you played it well".  That quote is used at least 3 to 4 times a week in our home.

Dave and Kerri taught us hand and foot.  Thankfully they don't make me do the math required - it is not my strongest skill.  Though, if Dave would let me count - Kerri and I would always win (which we usually do anyway).

We play euchre with my Mom.  She is one of the smartest people I know.  Her knowledge is vast and her wit is quick.  However, she has an issue with cards.  Namely, "who is my partner again?"  Um, the person sitting across from you (which 99% of the time is me).

Cards take my mind off of pain and offer me a distraction that I am always grateful for.  They are a tradition with friends and the comments and quotes that occur during games become household words that are spoken with love and always a smile.  These moments that I treasure help me find spoons on spoonless days and help me cope with crushing pain when nothing is working.  I draw upon my memories of good times to get through the difficult ones.

Many of you know that my Mom came from Ohio to help with the transition from hospital to home and stayed for a few days.  Tim, Robert, and I played euchre with my Mom on her last night here.  There was a huge amount of therapeutic laughter and the quote of the night is a keeper:
Tim (to Robert): You really don't want to see your Mom or your Grandma doing 5 tricks in one night.
Grandma: Yeah.  That is 4 tricks too many!

Setting off the alarms

In 2009, I had a neurostimulator implant at Beth Israel in NYC.  Basically, it is a device that sends constant electrical impulses to my brain in order to interrupt the nerves that are sending the pain information to my brain.  I have to say that the outcome of the surgery was a success because I went from being in bed 7 days a week to being up and about 4!  (Minus the last 7 weeks)  It was a very long recovery as I had a huge scar on the back of my neatly shaved head (to add to my chiari decompression scar) as well as 5 tiny scars on my neck and shoulder where they tacked up the wiring and then a 3 inch scar along the top of my right breast where the battery pack is.  The best part?  They considered this out patient surgery and I was left to get medication filled at 7:30 p.m. after having been up since 5.  Tim and I were wandering all over Manhattan to get these meds as we found out that not all Duane & Reade carry the medication I needed.

That is a visual that must cause laughter.  A woman who has the back of her head shaved, tegaderms over gauze wrapped about her head, shoulder and chest, clinging to a orange blanket (Tim had purchased for me in the city) as I was freezing wandering Manhattan trying to get the medication filled that we needed.  To make things even more exciting, the doctor had written the wrong dosage so Tim had to go back to Beth Israel, get to the surgical floor and try to find someone to fix the error at 8 p.m.  As the running around was killing me, he left me with a juice sitting at an deli with people watching me like I was some sort of  exhibit.  I was in a serious amount of pain and we realized that we were not going to make the ferry back to our friend's home in NJ as we had planned on staying there since this was a "minor outpatient" surgery.

So while Tim was trying to break into the surgical floor of Beth Israel since it closed at 7 (I was the last patient to leave), I did what anyone would do - I called my Mom and cried.  Loudly and long.  She miraculously found us a hotel to stay at that wasn't $500 a night and we went there as soon as the medication saga had finished and we had our meds, my blanket and me.  This ended up being almost 10 p.m.  The fun doesn't stop there.  We arrive at the hotel and I am once again stared at like some alien creature.  They give us a key to our room and we ride the elevator up to the 8th floor.  The key doesn't work.  At this point, Tim who never comes unglued begins to come apart at the seams.  He goes and gets the manager who assures us that the key works and we just need to try again.  The manager tries to no avail.  Tim is about to crush the 20 year old night manager and tells him politely but very firmly that we need a room and NOW.  So after another 10 minutes, the manager has returned with a new key to a different room.  Finally around 10:30 I collapse on the bed - never more thankful for being horizontal.

This implant is super cool and when I think about it I feel bionic.  I have 4 electrical lines that run into my brain, 10 feet of wiring and a hermetically sealed battery back that will last for 90 years.  Cool.  I keep hearing the sound effect of the 6 million dollar man whenever I think about my bionic status.

However, there are issues. I cannot have MRI's.  No big deal - CT scans work.  I cannot go through the metal detectors at airports as I will not only set off the one I walk through but all of them.  Oh well, at least I get felt up once in awhile. ;)  The issue that is most problematic is shopping.  Macy's, Kohls, Old Navy, Target - I set off the alarms there and people stare at me like I am some sort of deranged shoplifter using a cane.  At first Tim and I didn't realize what was happening though we had been warned.  Then it became funny and fits of giggling would ensue.  Now, it is just annoying.  No, I am not a shoplifter.  No, my cane is not some sort of device for hiding diamonds and jewels.  No, I swear that I don't have extra clothes underneath what I wore - I am just fat.  Yes, feel free to look through my bags.  No, I am not kidding that I have an implant in my brain (who would joke about such a thing?).  I am always amazed at some of the stupid responses I get when I try to explain what is happening.  Such as "Really?  You have wires in your brain?" "Does your head get hot when you go through the metal detectors?" "Can you send too much power to your brain?" "Does your brain buzz?"

Being bionic is a privilege that I am honored to have.  I love that I have been able to regain some of my life back and each passing month (excluding the last two) brings better things to my life.  However, I could do without some of the questions.  Especially the one that Tim quotes non stop from Christmas Vacation "Do you piss in your pants and forget your name every time you run the microwave?"   Yeah, he is that kind of guy.

Hospital Land Part III

Thankfully, being an advocate for myself paid off and Tuesday morning I met with a neurologist.  Well, he was the intern for the neurologist.  As I rapidly fired off questions of cerebellar herniation, CSF levels, and the possibility of going back in to do another decompression with a shunt I almost felt sorry for him as it was clear he was in over his head.  Within an hour, Dr. D (the neurologist) came in to talk with me.  I knew a little about him from being a frequent Bassett visitor both inpatient and out, though I didn't really know if he was a progressive or conservative regarding pain management.  I quickly relaxed when he went out and got a chair to sit in so that we could talk.  The fact that he clearly was willing to and planning on spending time with me put me at ease immediately.
We discussed my unusual genetic makeup and my non-reaction to any opiates or narcotics.  He seemed calm and brought a sense of serenity that I had not felt before.  He answered all my questions, agreed that more surgery was extremely unlikely to be beneficial and discussed with me using DHE (Dihydroergotamine) to bring down my pain.   I liked that he never said they could get rid of my pain (that is a dead give-away that the person has no clue) but that we could bring it down to a manageable level.  The DHE was a 48 hour treatment which could be extended to 72 hours if it were helpful.

It took us a couple of doses to find the right order of things (DHE causes severe nausea as well as some other side effects that were able to be minimized by timing the medication just so) and it brought my headache down from a 10 to a 7.  Huge progress.

We continued the DHE through Thursday evening and decided that a few extra doses would be good.  I had moments where my pain was a 6, which for me, is usually unimaginable.  I left the hospital on Friday after an 8 day stay.  Throughout it all, I believe that my ability to advocate for myself is what led to finding the right doctors and the correct medication.  Mine is not a simple case and finding a group of doctors and nurses willing to work together was the important piece of the puzzle that I gladly (and rightfully so) give them credit for.  The nursing staff worked tirelessly to ensure that I had a chance for sleep (no blood pressures at 3 a.m.) and they did everything they could to keep my room quiet.  The doctors wrote the orders but the nurses carried them out with compassion and professionalism.

This experience affirms things I already knew but feel important to share.  1.  You have to be your best advocate.  If I had not asked for neurology to be brought in to consult on the CT scan, I never would have met Dr. D and never would have had his input and expertise to try DHE.  2.  You need to know your illness.  Read everything you can so that you know the questions to ask.  3.  Use your nurses as advocates - mine were amazing and I cannot thank Bonnie and Christina enough for their tireless work, constant support, and true advocacy.  4.  Know your limit on pain and speak up when you are nearing it.  Don't wait until it is a 10.  I still have a tendency to do this as I am always convinced that this time it will magically go down and I will be able to continue doing what I want when I want - this is not the case.  5.  Don't be afraid to offend your doctors.  Yes, you need them on your side but you also need them to know you are aware of options and are going to advocate vociferously for yourself.   I am sure that the pain management team was not pleased that I called their imitrex solution a "first year medical student prescription" but I got their attention and made them think harder, re-read my file and either admit that they didn't have any suggestions or bring back a better one.

Our medical system needs an overhaul - which almost all of us agree upon.  However, I am proposing that one of the most important aspects of change that hospitals need to implement are the use of patient advocates.  Nurses who have 10 and 12 patients to care for cannot adequately advocate for each of them.  Patients are in pain or medicated or both - none of which lends itself to advocation well.  Until we ensure that every patient is heard and cared for, we are not doing the job we should be.  I was able to advocate because I had been down this road many times.  However, Tim could not be at the hospital like he usually is and I was often alone.  Imagine how differently this story would have unfolded had I been alone AND unable to advocate for myself.

If more doctors (and hospitals) remembered the words of the Hippocratic Oath as re-written in 1964 by Dr. Louis Lasagna, there would be less suffering and more understanding of chronic pain and invisible illnesses.

 I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

Hospital Land Part II

Sunday is day three in the hospital and nothing seems to be getting better.  The meds they are trying have all been tried before with no relief.  It feels as though I am slipping through the cracks and the pain is so intense.  It is all I can do to not lose it.  Thankfully a friend stopped by and gave me a few hours of support and distraction from the intensity of the pain.  However, I still wasn't sleeping so my tolerance for pain was at a zero.

Monday (day 4) was the day that things got interesting.  I had managed to sleep for an hour the night before so for some reason, the doctors were happy and considered that "sleep".  Yes, it was better than nothing but only marginally so.  I had a nurse tell me that if I would get up and walk around my headache would be better.  Seriously?  What a news flash!  If only someone had told me that decades ago I would have been cured.  Oh, and since I love the outdoors and hiking I guess I would have never have gotten chiari.  Ugh.

The pain management team came to talk to me and returned a few hours later with an earth shattering suggestion: imitrex.  Seriously?  I came unglued.  First of all, any first year medical student would suggest that for migraines.  Secondly, I have been followed by them for 5+ years and they knew I had tried it repeatedly with no success.  I suppose that it was rude of me to point those issues out but I was out of coping skills.

My team decided to order a CT of the brain to make sure that there wasn't anything new developing that we were overlooking.  When the results were in and the doctors came to talk to me about them, I asked specific questions about the CT that the doctors were unable to answer.  I wanted to know the exact herniation (if any) of the cerebellar tonsils.  This led me to ask to speak to a neurologist or neurosurgeon and thankfully, that is when the week began to change.

Hospital Land Part I

So after 6 weeks of massive pain and insomnia that remained almost exclusively at a 9 or 10 and 2 trips to the ER as well as a day long clinic visit where I received pain meds via IV, I gave up last Friday and went to my doctor knowing that I would probably be admitted.  On top of this was the flu that Rob gave me and left me with diarrhea for 6 days which had dehydrated me so I was a mess.
Dr. B talked to me and gave me an examination and said, "Yep.  Time for inpatient."  At that point I met with the hospitalists and found out whose team I was on.  Thankfully, I had a great group of doctors covering me.  I was also placed on the pain management team which I have been on for 5+ years and know them all.  This happens around noon on Friday.  I was told that I would have a CT scan of my abdomen to make sure that the diarrhea and pain weren't a symptom of something other than the flu.  I assumed that it would happen that day.  At least that is what I had been told and I had not eaten or drank anything since Thursday so all would be fine.

As soon as I heard the word "fine" I should have gathered my clothing and started running.

The next person to come in was a great nurse who works for Dr. B and I love her.  She tried to get an IV going for fluids.  After 2 tries, she decided to call the IV team.  Let me point out that I am a hard stick.  I have horrible veins.  Even the red cross had to stick me multiple times for me to give blood.  At 18 I had horrible veins and that has not changed.  IV team came in (another nurse I knew) and tried twice as well.  She managed to get one but it was with a 24 gauge needle (TINY).  Somehow there was not good communication and a nurse ran a bag of saline open through this tiny needle.  The vein blew within an hour and my arm swelled.  During this time, they managed to find me a room as I had come in to the clinic not the hospital and I was transported there.  I asked about the CT scan and was told that it would happen today and not to worry.  It was being taken care of.

Again, as soon as I heard it was being taken care of, I should have gathered my clothing, my  ice bag for my swollen arm and got the hell out of there.

The lab came in to draw blood - remember we are at 4 blown veins now.  I tell them that.  They try twice and one of the tries was literally 2.5 minutes (I timed it) of digging in my arm.  Finally I politely say that I have had enough and to call IV team.  By this point, it is almost 5 p.m. on a Friday and I am beginning to wonder if I will ever get to CT.  It was ordered at 1.
IV team comes back in, tries once more and says, "Not gonna happen, you need a picc line." (I now have 7 blown access points)  However, everyone who can do a picc line has gone home.  I can't have the CT scan without IV access as I need it with contrast.  I am not producing urine as I have NO fluids and I cannot eat or drink because - you guess it - I am going to have a CT scan asap.
Friday night is drawing to a close and not only do I not have IV access, I have not resolved my pain, insomnia or know the cause of my abdominal pain.  Thankfully, I did take imodium around 3 a.m. on Friday to control the diarrhea so at least I am not running to the bathroom.  However, I am emotionally spent and rather pissed off.
Saturday morning dawns and around 9:30 the IV picc team comes in and places the picc line.  I am excited as I can now get fluids and drugs (and let's be honest, I am hoping they are good ones as I have not slept for 3 nights now and the pain is at a 10).  I assume that I will be whisked away to CT and will then be able to eat as I am becoming a bit peckish.  Nope.  One o'clock comes and goes.  We have now hit the 24 hour mark on waiting for a CT.  Two and three and four o'clock pass me by.  Anger is beginning to boil over within me.  I am in pain, exhausted and nurses are frustrated that I haven't peed in almost 24 hours.  Well, it is hard to produce urine when YOU ARE NOT DRINKING AND JUST BEGAN RECEIVING IV FLUIDS!  Finally, at 4:30 I go to CT, get the scan done and find that there is nothing wrong.  I eat a tiny bit and drink a lot of water and go to bed on Saturday still in massive pain, without sleep and sick to my stomach.

Catching Up

I finally came home today after an exciting 7 nights and 8 days at Bassett Hospital.  I have lots more stories and insights to share.  The first that comes to mind is a nurse who told me if I got up and walked around that my headache would improve.  Of course, I jumped out of bed and raced around those halls - it was either that or punch her and since I am a pacifist it wasn't really an option.

So, I have lots to share but will need a few days to recuperate.  I appreciate everyone's support during this extremely difficult week and I look forward to sharing more laughs and cake soon.

Being the exhibit

I had my chiari decompression on April 9, 2004.  My son, Robert, was in first grade at the time.  After dealing with lots of fear regarding the surgery itself and the possibility of my death, I came to be somewhat of a celebrity.  How many other first graders' mothers had shaved heads with a large scar because their brain was too big?

In May, 6 weeks post-op, Robert asked me to come in for show and tell.  I thought he was nuts.  Seriously?  I look like hell, I had just gotten out of the hospital after lunging after his sister who was 4 to keep her from falling down the basement stairs and setting back my healing significantly and I certainly didn't feel well.  I felt like my skull had been cracked open.  Oh wait, it wasn't cracked, they used a saw.  Over the years I have proven to be quite the walking exhibit for my kids.  For his history day project, Robert and his friend used my MRI's to show the how the MRI has changed medicine.  It is a great party trick to watch me "tune in" to my neurostimulator and if you are really lucky, I will turn it up enough that you can feel my head vibrating.

Who knew what a kick chiari could be?

Anyway, so in May of 2004 Tim and I decide that I will go and be the star of show and tell.  They devoted the whole time to me.  We explained in limited detail about how my brain was too big (kids were in awe), drew pictures on the blackboard to show how they took my skull off (kids were amazed and grossed out) and then, of course, there was the enormous scar and shaved head I was sporting.  I admit that I don't remember all the questions that were asked of me that day.  But I do know that it gave Robert celebrity status for a few weeks and forever changed the way we talked about having chiari.  It wasn't something totally scary anymore.  Yes, it still sucked at times but now it was cool.  A scar, a brain too big to fit and later to come - bionic.

Get on board or GET OUT OF THE WAY

My body and are are having an argument.  Neither of us seems to be winning.  I have hopes, dreams, and plans that I actively try to live out.  I can cope with a bad day here or there - even a few in a row.  Since the beginning of January when my health began to unravel I have tried to be kind to my body and now feel angry that it doesn't seem to be returning the favor.  Today I had plans with 4 people and spent the entire day in bed.  I didn't move, watch television or read.  I meditated and waited for the nausea and pain to pass.  I am still nauseous and in pain but it is less than it was this morning when I literally could not turn my head without an immense wave of pain and nausea overtaking me causing me to focus on my breathing to get through it.

I wish I could explain to my body that I need it to work for me.  I have friends I haven't seen because of the failure of my body to act appropriately.  I have plans and dreams that I cannot implement until I know that my body won't crash for a month as it currently has.

This is the plight that all living with chronic pain have.  Almost everyone I know who lives with it has good times and bad.  Sometimes you have months where you can be "normal" and then suddenly, without warning, the body stops cooperating and the pain, nausea and other symptoms comes crushing back.  These episodes can be a day, week, or months on end.  The problem being that most people don't understand this phenomenon.  How can someone who was doing so much suddenly not be able to take care of the smallest details?

Because no matter how great we are on our best days - we are still sick.  We still have a disease that flares without warning.  That comes to visit for an hour and stays a month.

I am beginning to see my disease like a bad, mooching friend.  Sure you can crash on the sofa for a day and then 2 months later you are wondering how it came to pass that you are doing their laundry and they are eating all your food.  Unfortunately, my analogy only works a little.  A bad friend I could kick out.  The illness I am stuck with.  Somehow I have to make peace and move on.  It would just be easier to do if I didn't have to give up so much in the process.

For my friends who I didn't get to see - I love you and miss you.
For my plans I didn't get to implement - there is always tomorrow and I won't give up.
For my dreams that didn't materialize - don't stop coming to me because someday we will make them happen.

Feedback

So, after a week of highly interesting posts (soft applause here) I am asking for feedback.  What do you think?  Too serious?  Too sad?  Not funny enough?  Needs more anecdotes?

Any suggestions on how to reach out to others who are dealing with invisible or chronic illnesses?

Too early to decide?

I really do appreciate any feedback you can offer.  While I enjoy writing and ranting, I want this to be a tool to help and inspire others.  I mean, it is great for my ego but I should do something more than just prop myself up ;)

Emotional and Pain Apartment

It was recently brought to my attention that I own a LOT of emotions and pain.  My initial reaction was "don't we all?  Isn't that what being human is about?"  Turns out, I was wrong.  Changing our language changes our perceptions.  Yes, it is something that I already knew but I wasn't always practicing.  I also have learned that mindful practicing works best.  We live many aspects of our life on autopilot and paying attention turns out to be a good thing.

Let me give you some simple examples of what I mean: referring to 'the pain' instead of 'my pain'.  It makes it easier to envision it passing through me and not taking up residence.  I have felt that it has lived in me for years and by imagining the pain as having an apartment outside of me and just visiting, it has helped me in the middle of the night when no one is around and there are no pain meds.  I envision sending the pain in a taxi back to the apartment.  I keep breathing and trying to breathe it out of me. I used to catch myself holding my breath when the pain was really intense and the lack of oxygen cannot be helpful.

There are a million examples I could give about our language usage that changes relationships and perceptions - most of which you probably already know.  The question is: are you practicing healing, peace and love or do you just know it?

I am guilty of taking on an emotion with my language instead of allowing it to be a passing feeling.  I usually say, I am so frustrated, angry, sad etc.  If  I would practice saying, " I feel so frustrated, angry, sad, etc." it would make it an emotion that is passing and one that I am not owning or keeping.  It is the apartment idea.  I only want things living in me that are happy, healthy, loving and peaceful.  The rest of it can live at the apartment.  Why do I need to have those emotions and feelings live with me?  They are easily accessible (they never sleep, have no friends and usually just sit around the apartment waiting for my call) and taking them out of my residence means that I have more room for those that I want to live in me.  Patience, tolerance, love, peace, health, joy, gratitude...

Fatigue

Fatigue of mind, body and spirit is one of the most difficult aspects of a chronic illness.  When one is tired, there is no energy to deal with pain, to advocate, to patiently explain to friends and family - there is just exhaustion.

My body is exhausted.  It has spent years fighting to live, to work, to play and to command the pain to stop.  Fatigue will be the determining factor in whether I succeed or fail...whether the pain overtakes me or I manage it.

There are ways to counteract the fatigue but they are not always easy nor readily accessible: friends, family, cleaning service, psychiatrist, therapist, support group, dog, pastor/spiritual advisor, masseur etc.  See, the fatigue isn't just about sleep (though my lack of sleep causes great issues) it is the fatigue of the spirit that endangers those living with chronic illness most.  Once the spirit gives up or surrenders, the body loses its ability to fight.  To kick and scream and say "like hell is the pain gonna take me".

Fatigue also threatens all around us.  Partners, doctors, children, friends, family - they all get tired of hearing about being in pain.  They become exhausted by the tedium of doctor visits, lab work, and alternative therapies.  Thankfully, it is easier for them to recharge because they are able to leave the pain and fatigue behind and focus on what is in front of them before coming back to it.  Sadly, those living with chronic pain don't have those spans of freedom, they are given only moments.

There is hope.  We can counter fatigue by recognizing it and surrendering to it at times.  Allowing ourselves to be exhausted and giving ourselves a break can help.  Removing the guilt from the situation (I should be able to just clean the kitchen) also helps break the cycle and hold that fatigue has.  Reaching out to our friends, support groups, and loved ones - asking for a great story or joke, a meal, a hug, can give us moments of freedom from fatigue.  Cling to those moments and use them when you are maxed out.  Finally, remember it is okay (and understandable) that we are exhausted and fatigued.  We spend everyday in a battle with our bodies - trying to do the unimaginable: using a sick body to do healthy, happy, fulfilling things.

Next time you have a friend or loved one who is fatigued, honor them and their constant battle by sending a card, a meal, a kind thought, a prayer, a gentle hug.  Remember what it is like to be exhausted and imagine doing that everyday.  You will find kindness and compassion for many around you.

Remember: illness isn't catching, kindness is :)  Pass it on.

Helping

Helplessness.  It seems to be an overwhelming feeling that many people with chronic illnesses experience.  We are helpless to stop the pain.  We are helpless to push our doctors to act.  We are at the mercy of the scheduling department and availability to see our doctors.  Many of which are specialists that can take months to get in to see.  On our worst days, we are helpless in our ability to care for ourselves.


As I sat here this evening, unable to sleep (gotta love insomnia), trimming box tops for education for my children's school, I reflected on my own issues with helplessness.  I spent years fighting the feelings of helplessness only to fall into the pit of despair as I couldn't accomplish what I thought I should be able to as a woman in my early 30's.  This pit kept me from being helpful at times because I didn't feel I could do enough. I didn't want to volunteer someplace - I wanted a job.  I couldn't have a job but that didn't stop me from feeling that I should have a job - that I should be working.


I was helpless.  Helpless to contribute to my family's financial well being.  I thought about volunteering but dismissed the idea because who could use me if I could only offer an hour a week?  Who would want a volunteer that needed to work from home?


Well, I have learned that I am wrong about many things over the last 7 years.  I am not helpless though I feel that way at times.  I have worth and value whether you calculate it by my salary or by the love that others experience when I reach out to them.  There are plenty of organizations that are thankful for an hour a week and there are things I can do from home.  I don't have to spend my time watching television, reading books or waiting for my copy of AARP (which I cannot receive for another 19 years anyway).
  
Contact your local schools and offer to help with their PTA/PTO or at the school.  You might be surprised at how excited they are to have someone come in and check in books in the library for an hour a week.  There are also many things that can be done from home - press releases for events, clipping and organizing box tops, researching which online company will give the school the best fundraiser.


Contact the ASPCA or local animal shelter, your local library or museum.  Again, an hour there makes a difference.


Yes, we may not be able to work 40 hours a week.  We may not be able to work 20 or 10 or 5.  Perhaps we cannot leave the house.  But we can find ways to contribute and in doing so, we receive much more benefit than the organization we are helping.  I know that having to quit working was an emotionally crippling event.  I mourned my career and a job for a few years.  It took me a long time to believe that volunteering was a worthwhile adventure.  


And an adventure I have had.  One of the wonderful aspects of volunteering is that you do it when you can.  Thus, no bosses angry that you had to cancel or reschedule.  I have had to reschedule a few things and the people I was working with were generous and kind.  They were so happy to see me next time and each volunteering opportunity reminds me that I have worth and value.  That I can contribute to my community.  I refuse to be defined by my illness and pain and volunteering allows me to prove that in a tangible way.  It has been extremely fulfilling for me and hopefully for the organizations I have helped.

Try it.  What do you have to lose? Besides always remember:

Spoons

What a week.  I started a blog, came out, cleaned the kitchen, caught up on laundry, attended two doctor appointments, and had a kid with the stomach flu.  I am spoonless at the moment which brings me to my next blog entry: spoons.
For those who have been faithful followers, you might remember that I have a serious love of ice cream - but these spoons are not for eating, they are for living, coping, and communicating.

An extremely bright woman, Christine Miserandino, developed the spoon theory while trying to explain to a friend what is was like living with a chronic illness.  Every morning when you wake up, you have a certain amount of spoons - but no two mornings are the same.  Sometimes when you wake up you will have 2 and other days you might have 30.  Each act of your day requires a spoon and sometimes more.  Getting out of bed? 1 spoon.  Showering? 2 spoons (gotta be careful getting in and out of the tub as balance is an issue for me with chiari not to mention that you are wet).  Want breakfast? 1 spoon.  Get dressed? 1 spoon - maybe two depending on the shoe choice and if you have to bend over to tie them (this could explain why I never wear thigh high lace up boots....).
Spoons are non-transferable  - an abundance of spoons today does not mean you get extra tomorrow.  Use them or lose them.
I think you get the idea.
My finding the spoon theory changed my life in that it gave me a way to communicate with all I love and who love me about my illness.  Now my friends, children, Tim, and my doctor, understand a 10 spoon day much better than me saying my pain is at a 7 out of 10.  There are days that I can function at an 8 on the pain scale and then there are days when I am at an 8 and spoonless.  Yes, the pain might be the same but what I did the day before might have increased the exhaustion.  Or maybe I just woke up spoonless - it happens.

My friend, Janine, started a trend among my friends of sending me spoons - and I love it.  It is a daily reminder that I am not on this journey alone.  That friends will donate a spoon to me when I need it and ultimately - it will be okay.  So next time we are chatting and you ask me how I am, don't be surprised when I answer you in spoons.

Kids

I have two wonderful children.  A son, Robert, and a daughter, Mary (this is one of my favorite pics of them from 2007).  Thankfully, I had children before I was diagnosed with Chiari or I am not sure I would have been able to have them.  They bring me more joy than I could ever imagine...they have also contributed to a quickening of the sprouting of grey hair, wrinkles, and a severe loss of patience.  I ask you, how difficult is it to remember to put on deoderant?
Though they have the benefit of two parents who love them and shower them with self affirmations and mass amounts of sarcasm, they deal with having a parent with a chronic illness in massive pain everyday.
The headaches began worsening when Mary was 3 and Robert 5.  By the next year, I was exhibiting other symptoms and was diagnosed with chiari.  My children had to face my mortality as I prepared for brain surgery when they were 5 and 7.  Tim and I always stayed positive but honest.  "Is the surgery dangerous?"  "A little but we have the best doctors in the whole world."  We believed that and still do.  "Could Mommy die?"  "All surgeries have risks but Mommy is strong, tough and we have the best doctors in the world."

My children have nerves of steel and extremely compassionate hearts of gold.  It is not what I wanted for their childhood.  I wanted to take them to the park and spend every moment possible playing and laughing.  Far too  many moments were spent asking them to play very quietly so as not to hurt Mom's head.
I carry much guilt over the mother that I am and was.  I look at them - now 11 and 13 - and wonder if they would be different had our lives been different.  Would their life be better?  Would they be happier?  Maybe. Would they be the amazing people who don't judge people based on their physical abilities but on the people they are?    Would they recognize those needing help and reach out?  Maybe not.
I have learned that it is more important to protect their childhood than it is to not out myself.  I wish that I had done it sooner.  Allow me to explain.  They have never missed an opportunity to go and do something because I wasn't feeling well as I would call and get them a ride or make arrangements for them to attend and Tim to bring them home.  However, they have had far too much self sufficiency and responsibility.  I hadn't reached out like I should have to ask people (when Tim was extremely busy) to come over and spend 20 minutes cleaning up the kitchen for us or folding the 5 loads of laundry that I had finished but not had energy to fold.  I think that children should learn self sufficiency - far too many adults don't stand on their own two legs.  However, my children have one childhood and I can ensure that in the next few years, I will be reaching out more and depending on them less - regardless of if they can do it or not.
I know they can do laundry, clean the kitchen, clean the bathroom, vacuum etc. but they shouldn't have to every time I cannot.  Chores are great - filling Mom's shoes; not so much.
Though it has taken years, therapy, crying, screaming, depression and all the other stages one goes through upon knowing they have an incurable illness, I have come to see that there are blessings in having chiari.  I wouldn't wish it upon anyone but I know that myself and my family are better people because of it.

Quest for cake

Being in constant pain causes one to search for ways of distracting oneself, soothing oneself or stopping the pain.  Since I cannot stop the pain, I use facebook, books, internet, and television (both good and bad) to try and distract myself.  Soothing myself is where I have gotten into trouble.  Get your mind out of the gutter (J, J and L) I am talking about food here.  Yummy, smooth, creamy ice cream was my go-to food for a few years. I briefly dabbled in home made salsa and chips (which I LOVE and the best home made salsa is Kim J.'s).  Now, I am on a quest for cake.  Not just good cake - great cake.  Ohmyheavensthereisagod cake.  Moist, chocolatey, no icing necessary cake.
If you possess that recipe, please share...or better yet, drop off the cake.  I promise to clean the dish and write you an appropriately wordy thank you.

Coming Out

Coming out was the best thing I ever did.  No, I am not talking about my sexuality - that is another blog post entirely.  I have spent 6 years trying to be "normal" and cover my illness.  I downplayed surgeries, massive pain and using a cane.  I stayed home when the pain was too much or when I could barely walk so that others wouldn't ask me questions.  All I wanted was to be "normal".  Most of my time away from home wasn't spent at work or kids activities but at the hospital and doctor's appointments trying to find relief.  I did everything they asked.  I tried every surgery, every medication, every treatment and managed in a small town of 2,500 to keep most of this under wraps.  What I didn't realize was that by attempting to be normal, I was killing myself.  Not literally but emotionally.  It is scientifically proven that those who have a strong support system do better.  I knew that and thought I had that but I was fooling myself while trying to fool everyone else.

Last spring, I spoke to a friend's graduate class on chronic illness and the importance of community outreach programs for affected people and the current lack of community programs.  Little did I know that was the start of my coming out.  During budget cuts that were announced last May I got involved in a fundraiser to keep a science enrichment program at my children's school.  I met some great women and men and I began to build trust with them.  Due to my involvement with the science fundraiser,  I joined the PTA as the fundraising chair.  I was still passing as "normal" but taking baby steps towards coming out. That was step 2.

After 4 failed back surgeries last fall I had decided on my own that I was done with invasive procedures as they were not helping and had actually made things worse.  That was step 3 - I wasn't out yet but was getting close.  Things radically sped up in January of this year.  My pain was out of control and no medical interventions were helping.  I went from volunteering and attending school events to being in bed daily.  Finally my doctor made the difficult decision to end the ER/hospitalization/medication roller coaster and say enough.  No more.  It isn't working.  That was my breaking point.  I had to reach out.   I took a huge step of faith in the relationships that I had cultivated in the last year and put out my plea "I can't cook, clean, shower, feed the dog, or take care of my family. I need help".  And I got it.  An abundance of love from people that I never expected.  I began reiki and have been amazed by the relief it has given me in short bursts.  I came out.  I shared my story.  I started a blog.  I decided that the knowledge I had was powerful and I was going to use it.
Since I shed the skin of pretense and allowed people to see me as I am - unshowered, in pain, happy, sad, grumpy, I have been given a gift.  I feel as though an enormous weight has been lifted off my shoulders and I feel better.  Allowing people to care for me and to love me literally has reduced my pain.  (yes, I still feel like a mac truck hit me but it wasn't going 75 this time - just 40)  People do amazing things everyday while in pain and I have proven that for years.  However, with the support of my friends and family, I believe I am going to do some amazing things this year.  My future is so bright I gotta wear shades.

PSA (not to be confused with PDA)

 Invisible illnesses sound like some sort of super hero sickness.  "I am able to spread the flu without coughing, sneezing, breathing, or touching anything".  However, the reality is that these invisible illnesses are not only serious health crises but also emotional and psychological crises - and they are all around us. People suffer from chiari, arthritis, diabetes, lupus, lyme disease, fibromyalgia, cancer, etc. all the time.  They might look great.  They might not have lost their hair and maybe they aren't using a cane.  But they are in pain.  They are suffering.  There are times they cannot do laundry or even make themselves lunch.  Trust me - I am living it.

Well meaning people (I hope they mean well) offer the dumbest suggestions: "pray about your illness", "have you googled it?", "have you considered alternative medicine", "maybe you just need your doctor to change your prescription".  Gosh, I had never thought to try any of those things.

Invisibility: our struggles, hopes, dreams, and what we have lost.  I used to work full time.  I had a career, was a kindergarten room Mom, CASA volunteer and CEO of my household.  Now, I struggle to vacuum a room or take a shower.
I don't want pity.  I don't need pity.  I want equality.  I want to be just as important as the Mom who travels all over the world making 6 figures and somehow manages to make dinner for the family on Saturday nights.  I want my worth recognized.  Yes, it is different.  However, not throwing a tantrum, not screaming, not crying, not yelling at my children or partner, managing to attend my children's concert, or sit through dinner at the table - these are my triumphs...and they have worth.

Allow me to take you on a tour inside my mind.  Imagine the worst headache you have ever had.  Now, close your eyes and imagine that with your headache you are running along 5th Avenue in NYC hearing the horns blaring, cars rushing, people pushing past you, knocking into you.  Each sound magnified, each touch is electricity painfully shooting through you.  Now finally imagine while running you are listening to your ipod and the only sound is a tornado siren at its highest pitch.  It never, ever stops.  That is my constant headache and the tinnitus that constantly screams in my ear.  
Yeah, I deserve a freaking medal for attending a concert or making dinner.  I deserve to be treated with the same amount of respect and admiration that Mom's who bake brownies and make all their own damn bread are given.  All of us living with our invisible illnesses deserve that.  A little respect, a lot less guilt and unabashed kindness is what we need.

Yet, we are faced with the looks of  "Do you really need that handicap parking spot", "You don't work and yet you can't bake cookies for the kindergarten bake sale".  If only everyone could walk in our shoes for one day.  There would be a lot less judging and a lot more kindness randomly given.

I have chosen to share my life to remind everyone that just because someone isn't screaming, crying or throwing a tantrum does not mean that they are not seriously ill or don't need compassion, a hand, or a hug.  If you know someone who is dealing with these issues and is having a tough time - reach out. You will be amazed at the impact you have on their lives. Kindness is contagious - these illnesses aren't. Pass it on.

Thank you for listening. This PSA has been brought to you by Zipperhead Tamara. I currently have no endorsements but am willing to entertain offers.

It's about time

So, I have been thinking about writing a blog for three years now. My friends encourage me to share my life, inspire others, yada yada yada but the fear always stops me.

Do I really have anything to say? What if no one reads this? What if someone focuses on my grammatical mistakes? It has been a few years now since I was writing long papers in college.

The impetus that brought about this post was me taking a chance and posting a note on facebook about an experience in my life. See, I live with chronic pain. Not the kind of pain where a few advil will take care of it. The pain that morphine doesn't touch. Visits to the ER are fruitless, hospitalizations don't ease the pain, and we are all left standing scratching our head wondering, "Now what?". I have chiari, fibromyalgia and arthritis in my hips. That is the tip of the iceberg but I don't want to give away all the surprises in my 13 inch medical file all at once. For all those wondering, 1. No, I didn't use medication so often that it became ineffective 2. I don't frequent the ER as a drug seeker (I have been to the ER 3 times in the last year two of which were in the last week) 3. Yes, I am not kidding that morphine, fentanyl, dilaudid, oxycodone etc. don't work for me. 4. The doctors think it could be a genetic issue that causes my body to not respond to medication or the other theory is that my body's chemistry was radically altered as a result of serious prolonged child abuse.

Now on to the fun parts. Being in pain has increased my normally sarcastic self and elevated it to an artform that many would aspire to. I have also realized the importance of the "little" things most people take for granted: walking, folding laundry, making lunch, playing with my kids, sitting through a concert or a movie, leaving the house. I have had to quit working and now spend my time volunteering as a kick ass fundraiser. (just because I have spent most of the last month in bed does not mean I should lose all self esteem - I kick ass at fundraising).

I have come to see my "calling" (no, there were not angels or choirs involved) as being a voice for the voiceless. An advocate for those living with and suffering from invisible illnesses: Chiari, Fibromyalgia, RA, Arthritis, Lupus, Lyme disease, Chron's, Diabetes, PTSD....

It is not that I believe I am the most qualified. I just believe I have the chance to be the loudest. See, one of my absolute best friends in the universe is Laura. She could get everyone's attention at a Packers game. Shy and quiet she is not. I am channeling her skills to keep me going and help get the attention that those living in silence, not looking sick but feeling horrible, need and deserve.