A.S. Face 0502: Donnie Crow
My Journey with Ankylosing Spondylitis,
Hello, my name is Donnie Crow. I’m a 57 year old married man of 39 years. I have 3 beautiful daughters and four wonderful grandchildren.
My daughter Mandy asked me to write the story of my journey with A.S. down to share with others. I have to say I’ve had some serious reservations about telling my story for several reasons. The number one reason is for the fear that someone who has been newly diagnosed with A.S. will be discouraged by my words. So I would like to begin by saying that even with all you are about to read as far as my struggles with A.S. that I truly believe that I am a very blessed man and I thank God for my life and I wouldn’t trade my life with anybody else. I am very thankful for all God has blessed me with and I know we all have our own struggles in life and I have seen so many whose struggles are so much more severe than mine and my heart goes out to them. Now to be totally honest…I feel the need to get away from myself on the really tough days. Let me begin to back when I was in my early to mid 20’s when I first began to notice the many back aches on a regular basis. I’m told this is when my A.S. officially became active and my journey started. At first I always thought that my back pain was connected to my job since I have worked in factories all of my life. Hard work and alot of lifting was required daily with my line of work. For the last 27 years of my working life I worked in a roofing manufacturing plant where most of my work involved the lifting of roll roofing and bundles of shingles at approlximately 83 lbs. per bundle in my younger years. So as you can see this is why I assumed the back pain was just part of my work or a result of my work is a better way to say it.
I saw several doctors through the years and they would do x-rays and blood work on me and I was always told they couldn’t find any problems. They would just send me home with pain pills, that’s it. I consumed alot of alcohol in those years to help cope with the pain. I would tell myself that I knew all this pain I was having wasn’t all in my head and I wasn’t crazy. This pain was, is, and always will be for real.
As the years went on I knew something was wrong, the pain was increasing more and more. I was having issues sleeping because I couldn’t get comfortable anymore. I was having more and more trouble lying on my back.
At approximately the age of 31 to 32 I could no longer lay in bed. I was already at the point that I had a pile of pillows around me to keep me in a propped up position. It was too uncomfortable to lay down flat anymore. I also couldn’t lay on my side because I would suffer so much terrible pain with my neck. The movement in my neck was also beginning to decrease, this is the day I permanently moved to the recliner for sleeping.
By the time I was 34 there was no doubt in my mind I was not only losing movement in my neck but that I also was starting to draw over. This realization scared me alot. I knew surely I had something really wrong with me. Not only did I have all of the pain issues with my back but my neck hurt and still to this day hurts more than anything else. My neck pain has been fairly constant since this age in my life. Not only do I have a great deal of neck pain the muscles in my neck feel like they are stretched so tight that they are going to snap sometimes. My neck pops and cracks with every movement. At this age I also began to have pain issues with my shoulders and hands. I started to realize that the issues with my shoulders and hands must also be related to whatever problem I had going on with my back and neck. When I would craft or do anything with my hands I would always get alot of severe pain in my hands from sharp, short, sudden to long lasting and throbbing/aching pain that is sometimes severe. It definitely takes it’s toll on you after a while. If I would paint or do anything with my arms raised I would have severe pain issues with my shoulders. The worst part about the pain with my shoulders is that most of the times it combines with pain betweeen my shoulder blades in my back and then it never failed that would mean I would be in for a very, very long pain day. The pain has even taken my breath away at times when I hurt like this.
I would have to say the turning point for me was when I last visited my old doctor. After all of his tests he looked at me and told me. “The x-rays look good and I can’t see any problems.” I remember how angry I was that day knowing all of the times I had been there previously and complained to him about my pain over the years and knowing I’m losing my ability to move my head. I can see I’m starting to draw over, so I looked at the doctor and said “You mean to tell me that I don’t have a problems!?” “I believe I need to see another doctor.” Then I made an appointment with the doctor I have currently. I explained all my issues with him and he sent for my records and also sent me to a specialist. The specialist did some tests and told me he thought I might have Ankylosing Spondylitis. He then sent me to a spine specialist and she finally gave me an answer to what my problem was and diagnosed me with Ankylosing Spondylitis on September 17th, 1999. After 26 years of pain I now had my answer. I was 49 years old before I ever received that answer.
Approximately mid 1999 I started having trouble with my hips and legs in addition to everything else. My issues with my legs began with swelling around my ankles and then graduated to serious swelling in my feet, ankles and calves up to my knees. I would get a bright red rash on them and then blisters would appear. Then the blisters would burst and turn into sores. My feet would swell so big that my toes would not even touch the ground anymore. It felt like I was walking on pillows. My ankles and calves would swell two to two and a half times their normal size. My doctor is not sure about the connection of this issue and my A.S. but I’ve been put through heart tests, tests for diabetes and circulation and nothing additional to the AS was found. I’ve added this part to my story even though I’m not positive it’s linked to my A.S. but it has been such a serious issue I’ve had to deal with over the years, returning in cycles like all of my other pain. Sometimes the blisters and sores are so often the others don’t have time to heal before a new cycle begins and sometimes they are so large. I have been afraid I was going to lose my legs not to mention the pain like fire I experience with this. Pain so intense especially after a shower I would have to pat my legs dry in these areas because skin would come off on the towel if I rubbed them at all. My legs would drain body fluids into my socks and I would have to change my socks several times a day and couldn’t get shoes on my feet. My legs have now changed colors and turned a brownish color from the top of my socks to the approimately 8 to 10 inches up my leg and are that way to this day. I did find some relief from the severity of this problems when I visited my daughter in Florida. She works in a podiatrists office and the doctor she works for suggest I try a special soap to soak my legs and feet in called “Fungi soap”. Within three weeks all of the sores on my legs were healed and though I still get the swelling cycles of blisters and sores they heal much quicker now. This Funga Soap has made an incredible difference to my legs.
The issue with my hips is much like my other issues with A.S. I started having a little pain here and there as the time went on it appeared more and more often and increased in intensity as time went along. My hip issues have become the most challenging physical issue I have had so far. At first I would get some pain, mostly on my left side when I walked. Then it graduated to having spells where walking was out right hurting to the point of limping. I had days it was too painful to walk, severe sharp pains that seem to come out of no where to outright constant pain like a major tooth ache in my hips that run down my legs. When my hips graduated to the point that I could no longer make plans because I was not sure I could walk plus all of the other issues I have to deal with was the final straw and I finally accepted that I had to apply for disability. That was one of the hardest decisions I have ever made. I remember standing in my doctors office and I cried like a little baby. I felt like a loser, a quiter. I also felt like I was letting my wife down. I was so embarrasssed. My doctor had talked to me about disability a couple of years earlier but I told him I would not even consider it. I told him the same thing I had told my boss when we talked about it, the work was going to have to run me off. I was not going to quit. Now I knew I couldn’t overcome all of the issues of A.S. accepting disability was one the hardest things I have done in my life. I was down hearted over this for almost a year! Dr. Hurlburt III was the one who talked with me and opened my eyes to the fact that I was not a quitter, I was just changing my direction in life. Then I think I was finally able to let it go. Looking back at it now I realize how much mental strain there is with A.S. as well. I myself have put on a mask many times in front of my wife, friends and coworkers to disguise my pain and frustration with issues from this disease has given me to deal with. Many times I’ve made excuses at work as to why I was limping that day or being quiet and to myself and the many times it was so hard to keep focus on the subject at hand because I was hurting so much at the time.
Unfortunately I think family members have to see and and deal with you when you are at your worst. I know there have been many times I have been a bear to live with. I’m sure my wife that I love dearly has another name for it. 😉
I had a heart attack on June 28th, 2007 at 11:22pm. and after that had to have a stint put in. The swelling cycles in my legs have not changed. I can only connect this issue to my AS through the thinking that it’s because of my inability to get physical excercise because of overwhelming pain.
Now the days of my life are no longer based on my work schedule but on my ability to do anything or not. If I make plans or an appointment I get up five to six hours before hand to take pain medicine just to get moving. Showering and getting dressed can be a challenge on a rough day. My wife has had to help me at times, things like putting my socks and shoes on.
I never know from one minute to the next how or where I’m going to hurt. I can count on hurting if I do anything physical but even if I didn’t do anything physical I would still hurt. My neck hurts me all of the time but so much of my AS pain seems to have a mind of it’s own and can shut down my day and plans at any moment.
The other issue that is as consistent as my neck pain is my sleepless nights. The thousands of painful miserable nights…. The majority of my night I sleep in an off and on fashion. From 20 minutes to an hour of sleep, then I wake up and have to move around a little, then I nod back off and I do this on average of one to four times a night, every night. Sometimes I can’t sleep at all and I end up nodding off during the day. There have been many, many nights I have not slept at all. I have had more time than I can remember going two and three days without sleep until I was so tired I would eventually just crash.
I have a great fear of falling down or having an accident now. I have had things like a slip or a sneeze that have hurt me horribly for days. I have had a couple of falls through the years that I paid for dearly. I would like to find the person that came up with the term “The Golden Years” and kick him or her right in the shin!
The two worst days in my entire life were the two days I was told I had passed Ankylosing Spondylitis on to two of my daughters. It’s hard for me to even write it down let alone remember those two days.
I stay home most of the time now. It’s not just because of the pain of walking or the enormous effort it takes to get ready but I also because I get embarrassed at times when I’m out. If I drop something I can no longer bend down to pick it up unless I have something close to hold on to. There are times I have sudden sharp pains in my hips that usually cause me to make an uncontrollable short, loud gasp sound. I have had people around me vary from serious concern and offer to help me to others who get angry with me and curse at me because I had to stop in front of them. Let me note that I personally have seen more kind and caring helpful people than I have the rude and mean ones. I have heard people making fun of me a couple of times. I’ve heard people say things directly to me too. For example, a truck driver once asked me as I was walking along bent over if I was looking for money and then chuckled. I replied without hesitation “NO, I walk this way because it helps me get girls they love my neanderthal look.” and then I just kept walking. He made no further comments to me. I heard later that after I went on by a couple of guys that I worked with gave that truck driver an ear full in my defense. A couple of times I have had men yell at me and say “do you think you can walk any slower?” I bring this issue up just to point out that your AS not only affects you but all those around you that you love and care for are hurt buy their hurtful words too. I really feel sorry for a person that is so bitter in life that they make fun of or are angered by someone with a physical or mental issue.
I take life as easy as possible and enjoy it as much as I possibly can now because I don’t feel like anyone that hurts this bad can live a very long life. I have always believed that there is a reason for everything and that God would never put more on me than I can bear and that one day God will free me from Ankylosing Spondylitis.
For all of you out there with AS my best wishes and prayers are with you.
(This is not the end, just my story so far….. I’m headed to Florida to be a beach bum with AS and Fish! Fish! Fish!
Ohio United States of America