This is my 'coming out' of the arthritis closet. Most of you know that I share WAY too much information sometimes and so it might be surprising that I've been able to hide my experience for a good while. I want to share with you my experience this past year so that 1. you'll know what i've been going through and 2. you might be a little more compassionate (in case you weren't) to others who have chronic pain issues (especially ones that are NOT visible).
My reasons for staying 'in the closet' (sorry gay friends if this offends you) are that I don't have a confirmed diagnosis and I've been avoiding the 'helpful' comments. This is my story and it is long. It is unique to me and so if you happen to have similar experiences- make sure you research and get yourself to a doctor, a good one, that will listen to you and stay up to date on research.
After Isaac was born in 2008, I had terrible headaches. I also had back pain that started at the 'bottom' and traveled up the spine to my neck and head. The headaches didn't go away for months. We never got an explanation, but I was able to get to a good D.O. Neurologist and score a prescription for migraines that come and go (after trying the migraine diet which sucks- i love cheese). He was the one who first listened to my 'complaints' about my hands and did an MRI for MS. My hands would get 'stuck' in a position if I was scrubbing something or holding on tight to something for more than a second. It would come and go, but it began getting worse. Dr. Holt then did some bloodwork last summer. I was quite surprised to get a phone call asking me to return for more blood work. This made me nervous. I didn't know what we were dealing with, but only that I didn't feel right. The results were 'normal' so I went on my way without answers. I had been assuming my hand issues were from my neck (reminder: i had disc replacement surgery on my C5/6 disc six months before this)-- I had some spinal cord damage and so we sort of blamed my hands on that. The other joints that were starting to hurt-- I just blammed it on bad diet and being fat. I had lost a little weight before my surgery, but gained it all back in July of 2010 while taking meds for my neck and nerve pain. I'm out of shape and unhealthy. That's why I thought I hurt. But that wasn't why (at least the only reason).
I went back to my neurosurgeon to make sure my disc was positioned correctly and that there wasn't anything else going on. My recovery from surgery was VERY slow. I had begun to have low back pain. I remembered when Isaac was born that there were periods of time when I had to put him on the floor, kneel down on my hands and knees just to sit down to change his diaper. Getting up was the same routine. My back was so stiff and hurt so bad I could hardly move. And this was the low back-- the healthy part of my spine. (i have scolosis in the mid section and well my neck is a mess) At the neurosurgeon, I asked about my low back and mentioned my joint pain and other numbness and tingling in my legs and feet. I had a new Dr. since mine had a stroke and wasn't practicing and he did a blood workup on me that was so big, JCMC (the local hospital) had NEVER seen it. I had 25 viles of blood taken and was tested for EVERYTHING. I do not have lyme disease or lupus or anything else connected to joint pain that a blood test could tell us.
I do have a slightly elevated RA (or RF) factor (one of the first tests for Rheumatoid Arthritis) and a positive HLA B27 gene. I was referred to a Rheumatologist. I went in November which was just in time because by this time, my joint pain was getting worse. I was ALWAYS tired and couldn't stand for more than 5 minutes without my low back hurting. I was taking between 8-12 advil a day-- something that I'd already been on for my neck for almost two years. (long term NSAIDS can kill the stomach)
All my other blood tests were normal and I didn't have the classic 'RA' symptoms of inflammed, red, swollen joints. I had an x-ray of my pelvic area and there was no evidence of AS. I made a six month follow up appointment and went on my way with a 'come back if you need us' comment.
Side note:
AS is ankylosing spondylitis. It is a genetic disease that usually runs in males, but females do get it and it presents itself a little different. Most of the time, AS will fuse the low back all the way up. It will decrease breathing ability, it will affect the eyes, and many times the colon. It will eventually kill, if a side effect or other symptoms doesn't first. (RA patients usually die from heart disease-- one of it's lovely complications)
Weeks went by when only my hands or feet hurt. And then my knees and elbows and shoulders and hips started hurting. Then my jaw. My jaw was so inflammed, the TMJ doctor couldn't finish his evaluation. (part of it might have been from grinding my teeth while sleeping- in case you've been lucky enough to hear that)
I went back in February/March and was put on an actual medication. All these meds have serious side effects, but my quality of life, ability to raise my kids and continue working well was being affected. I needed more help to get me off the chair to help care for the house, or kids, or myself. The medication, I believe, gave me some strange vision symptoms. One of the rare side effects was vision problems and I decided I couldn't live with that side effect. Thankfully, I was on the medication just long enough to get me through Easter weekend (and the egg hunt)-- something I couldn't have done without help.
During this time, I returned to pilates. I hadn't been since before my surgery. Two days later, my back pain was unbearable. The shooting stabbing pain was just as bad as my neck pain had been, but not as bad as petocin created stage three labor pains (just for comparison). I now had a new friend in the form of narcotics. And another excuse to stay away from the gym. (i didn't need anymore excuses!) Time, rest, stretching and a chiropractor have all helped my back pain go from unbearable to challenging. And 29 days out of the month, I don't need extra pain meds. I am thankful to avoid surgery. So far, I only have dengenerative disc disease and a small buldge. Nothing like my neck.
BUT, during all this, my joints continued their journey of pain. Some days the NSAIDS and narcotics masked the pain, some days they did not. I started a new med called methotrexate and a steroid to help 'bridge the gap' till the mtx started/starts working. I take a low dose sterioid in the morning and my methotrexate on Wednesday nights. It gives me bad nausea and a horrible headache. I have a 'fog' on Thursdays and have to battle getting out of bed and staying out of bed. (this is my fog day-- and woo, i don't like thursdays- except i look forward to the weekend!)
So, I write this today, and even though my hands hurt I wanted to share this with you. If you've been around me in the last year and have thought, dang she's lazy- you are partly right and partly wrong. Yes, I'm lazy, but I'm also being challenged every day, every moment of my life with my new friend, arthritis. Whether it be Rheumatoid Arthritis or Ankylosing Spondylitis, I don't know. It may take years to find out. I'm not sure which I'd rather have. Neither of course. Thankfully, both are treated the same way-- with steroids, DMARDS, and biologics (you see commercials for these all the time--humira, enbrel, etc.)
I don't want sympathy or really kind words, just prayer and understanding. If you are are a Hazelwood or Ward family member and are experiencing anything like this-- get checked out or if your child complains-- listen to them. This stuff runs in families.
We all go through hardships and journeys throughout our lives and sometimes they make sense, but most of the time, they do not. I don't know why things turn out the way they do. I know this is not a punishment from God, nor it is an opportunity that God gave me to minister better. I do know that God has already given me the tools to face this without fear, with peace, and with love. I'm slowly learning how to care for my kids with this challenge and it is a challenge. They have to do things that most kids don't-- like get a sippy cup, a lid, a valve and the gallon of milk they desire or pull a chair to get the crackers off the fridge. I should be able to do those things, but some days-- I just can't.
Some days I can only go to a store for about 15 minutes before I get so tired or hurt so much, I have to leave. Some days it is a HUGE victory when I can take my kids to the park or take them shopping without help. I NEVER imagined that life would be like this, but it is.
So, I finally conclude this and just say thank you in advance for your prayers. Thank you in advance for your understanding-- not just for me, but for the millions of others that deal with some sort of chronic pain. I've almost let this define me, but I refuse to. I will, however, slowly begin to speak out and share my journey with others. I've written this today for myself and for you. It is helpful to tell my story to those I've kept it from and I hope it is helpful to you.
love you all,
grace and peace,
Deven
