Feb 20, 2012

Chronic pain, frustrations, and the fetal position.

I rarely talk about, let alone write about, my health problems.  There's 3 main reasons for this:  1) I don't want to be defined by my medical problems, 2) I don't like someone to cut me a break or give me sympathy based on them, and 3) there are tons of people who live with things far worse than what I have.

Having said that, I decided to write about this because I want to remember the frustration I feel in this moment as I like to be able to reflect.  In addition, it's a good place to give everyone an explanation (and apology for my absence) in one location.  I'm going to be as brief as possible because I have a hard time sharing this stuff, but the purpose of writing a blog is to be honest and forthcoming..

I should start by explaining that I have a lot of medical conditions, none of which are really visible so I don't look sick.   As I mentioned before, I rarely say a thing to anyone except my family and a few close friends.   Nothing presses my buttons quicker than being defined as the sick kid.  I have DJD (Degenerative Joint Disease).   So does my mother.  I was born this way,  I am limited but I'm not angry.  It's a small problem in a beautiful life that I live.  The most difficult part of this disease is the arthritis or joint pain you experience, and the eventual side effect of needing joints replaced (my mom had her hip replaced at 41). 

About 8 and 5 weeks ago respectively, a couple of things started happening:

Problem 1:  I started having what I thought was anxiety at bedtime or when I'd try to rest.  It was embarrassing, so I talked to my parents only.   I tried things that seemed typical:  a hot shower before bed, relaxing tea, more exercise, less caffeine.  Nothing helped.  I tried to decide if I was anxious about something (work, upcoming events, finances, friends).  None of that seemed to line up.  It seemed to get worse.  I would literally feel like I needed to run a marathon, shake out my hands and feet, jump around, etc.  I purposely gave up alcohol, telling everyone it was a new years resolution (true, but also something I thought might provoke what I perceived as "anxiety").  I reached out to a few close friends, and at the recommendation of one, tried Melatonin at bedtime.  It did help me a little but I'd still wake up "anxious" in the middle of the night. 

Problem 2:  I was driving home one Saturday and I started to get this pain in my neck.  I thought I'd pinched a nerve or slept wrong, so for the next 2 weeks I pulled the typical AGM, and I ignored it.  The tricky thing about chronic pain is that it starts to eat at you.  I tried the typical things:  heat, ice, Tylenol, ibuprofen, sleep.  None of that seemed to give me any relief.  Finally, super bowl Sunday, I went to the emergency room for my neck, desperate for any relief.  They were adamant that I had a tension headache and gave me muscle relaxers.  I was frustrated, but sure they might be right.  I tried the muscle relaxers when I could (while not working, I drive kids around as part of my job requirement).  They certainly helped with the sleep part, but did absolutely nothing for the pain.

 Fast forward to last week, when I saw my doctor, who ordered bloodwork for problem one and an xray for problem two.   For some reason I felt like if we could just NAME the problems,  I would feel better.   The doctor suspected that since I have arthritis in a majority of the joints in my body (due to my DJD) that the neck pain could be a degenerating disc, or arthritis starting there.   Today I got the call regarding my bloodwork and Xray.

Problem 1:  Restless Body Syndrome.  I guess it's the same as Restless Leg Syndrome, but it effects my arms as well.   It's tested by the ferritin levels in the blood.  The average person (without RBS) tests at about 50.  My blood is testing at 26.  Ferritin is apparently in the body via iron.  So the doctor hopes to have me take a supplement to raise this number and eliminate this problem.  I'm relieved that it's not anxiety--I think I was making myself crazy worrying that I was losing it.

"Problem 2" is a little harder to resolve.  I had 7 X-ray's taken.  The area that hurts is the space where your neck and head connect, dead in the center.  To X-ray this area, you have to open your mouth as wide as you can and tilt your neck back, as your teeth will be in the way of the X-ray otherwise. My X-rays came back inconclusive.  There doesn't appear to be fractures, so the disc is not degenerating.  The doctor would like me to wait another 2 weeks using the muscle relaxer to get sleep and Ibuprofen for swelling.  I have to be honest, the thought of two more weeks of this literally made me cry.   It's not the intensity of the pain (although that's high, I'd rate it a 7 out of 10 on a pain scale).  It's the consistency of it.  Chronic pain is enough to make anyone crazy, but it's literally making me angry, withdrawn, exhausted.    There is no break in the pain.  I even wake up frequently in the night to try to reposition to stop the pain.   I think I will be more pushy in asking for an MRI.  If anyone has experienced this, anything like this, etc--I'm open to suggestions.  A few people have recommended a chiropractor, and I understand they have found a great deal of relief from this but I'm hesitant.  The more that we "align" my joints with my disease, the more headache I think I'll have so to speak.  In the past, I've been advised this may reek havoc on my body, as it's learned to function with joints that don't work like everyone else.

I want to be clear that I'm not asking for sympathy, not writing to throw a pity party--I'm writing to document how I feel in this moment.  More so, I'm writing to explain to those people who count on me and know that I've been avoiding phone calls, text messages, outtings at times.  It's for my parents, who have been so patient while I'm crying and venting about this pain I don't know what to do with.  The doctors used to be sure that walking would be a challenge for me.  I have photos in braces from my knees to my ankles.  I've overcome that obstacle and done it with a smile.  This is just a bend in the road, and I look forward to answers, to relief, to again defying odds. 

Thank you to all of you as you continue to be patient, continue to reach out to me, continue to understand.  Again, not an attempt to air my dirty laundry, but a far easier way to explain at large what's going on.  I love you guys, couldn't do it without you.

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