My name is Bill Havens. I am 40 years, old happily married to the woman of my dreams and I have 4 kids 17 y/o son, 10 y/o daughter, 9 y/o daughter and a 1 y/o daughter and I have been diagnosed with Ankylosing Spondylitis (AS) about year and a half ago. My Saga begins like so many others that suffer from this disease. With the pain, stiffness, fatigue, frustration and feeling like you are crazy because nobody believes you.
Some background: I first injured myself when I was 14 years old at the skating rink I fell when a smaller kid came in front on me and I hit the cinder block wall with my left knee and that was the start. I had to have surgery to repair the damage. Then when I was 19 I was involved in a car accident and injured my right knee and yes had to have surgery on that one also UGH!! So the Dr told me that I have the starting signs on Osteoarthritis in my knees I thought he was crazy I was only 20 years old. So many surgery’s and years later they said there really is nothing they can do about my knees except a knee replacement. I was to young for that because they would just wear out and it would have to be done again. So then I was involved in another accident I was rear ended and that is when the back pain started. So I went to Physical Therapy, Chiropractors, massage therapists and nothing was working. They tried the pain injections, tried to burn the nerve endings and again nothing worked so at this point I was really getting to end of my rope. The Pain and The Frustration of back problems: My knees never worked again correctly after the first injury. I wanted to be a Landscaping designer and that blew my chance at that due to I had to do the labor work first to learn about the business and I couldn’t stand to be on my knees for any long amount of time. My back pain started after my car accident when I was rear ended they did an MRI and found I had a bulging disc on L5/S1 so they started all the therapy and all and nothing helped so I was told to kinda deal with it, so I did taking lots and lots of NSAIDS and a heating pad was my best friend. That went on for a few years and I dealt with it until yes I was in another car accident this time a person ran a stop sign and this time the impact herniated my disc so again. They wanted to do the shots again and this time I had a reaction to them. I came home and felt off, then the sweats started and I thought I was gonna pass out so I called the Dr and she said this was normal. I believed her and also decided never again. So my back dr said there is nothing he can really do for me at this point and referred me to a back surgeon. I saw him and he decided to do a Microdisctomy on L5-S1. I felt better after for about 6 months then It started hurting again so I went back to Dr and he checked and did another MRI and said nothing was wrong and said I will see ya in 6 months. My 1 year post op visit came and I was still hurting. He said it takes time to heal. So I just continued to take the Anti-inflammatory and narcotics when the pain was really bad. . So then we were blessed with a new and bigger house (a three bedroom townhouse doesn’t work with 4 kids). We moved on 04/18/11 and were just getting settled and then the same disc ruptured again. This time it went out and up my spinal nerve. I have never felt pain so bad. I even have had kidney stones and passed it– this pain was worse! So I was taken to the hospital by an ambulance and was admitted because I couldn’t walk. After 4 days, the surgeon comes in and says we have to do surgery again because this time it was really bad due to all the scar tissue from the surgery before. After the surgery we discovered I have nerve damage in my left foot which left me with a condition called drop foot– not fun!!
My story of AS starts in April of 2010. It started with my hands beginning to hurt and stiffen up, so my family dr sent me to a Rheumatologist. At my visit, we discussed a lot and she informed me of a lot of things I had no idea about which really help clear things up for me. She sent me for what felt like 3000 x-rays and all kinds of blood work. Nothing came back so this was really frustrating. I knew something was wrong because I felt like crap and it was getting worse. Boy was I in for one rude awakening. I had no idea what was about happening to my body. I felt pain in the lower part of my back which I thought was just my back issues little did I know what it also was, and pain on the lower left side and down my left leg which was from the nerve damage. My entire lower back and left leg felt like it just wanted to stop working. Every morning it literally took me 30-45 minutes to get out of bed even and when I was able to get out of bed every step was painful, each movement that involved the left leg or back was excruciatingly painful. For a few months, I walked easy and slow. No one really had a clue as to what was going on. My family dr sent me for PT which was like torture every time I went I finally said this is not helping and stopped going. Physical therapy was just a waste of time. It was supposed to help with the pain. But as I previously said, it was a big waste of time. It didn’t do anything for the pain. My left leg would go numb and feel like it just wanted to give out and sometimes it did. The more I tried to walk through it the worse it got leading up to where I would just hobble around and really have to pay attention to how I walked and not walk on uneven surfaces. I was baffled. All the medical doctors wanted to do is feed me motrin or naproxen. They couldn’t understand why I was in so much pain. I was still slow and with four kids it’s hard to keep up with them thank God for my wonderful wife. I have been living with this pain along with the lower back and left leg issues for 3 years now. With no understanding of what the problem is. No one knew what was going on.
The pain was getting more frequent and worse. The episodes lasted longer and longer. This time was like all the others, except it never left. I was never able to stabilize my back again. For close to 15 years I felt pain in my lower back but this was unlike the past years. It would be extremely painful when getting out of bed, off the couch or even off the floor. It felt as if my back and leg area were shutting down and every movement was forcing it to “wake up” There were times I would be in tears from the pain. There were times I had to use a cane just to help me walk. It was horrible. So my Rheumatologist ran some tests and one thing she found was my LFT’s (liver function Test) were high from all the medication I have taken over the years so I was taken off all pain meds this was hell on earth. She also found out that I have fatty liver disease which from research I have done is from drinking too many sodas which I don’t drink anymore and could be from Fibromyalga that’s another condition I have which causes pain also and yes there is a pill for this. Another fun thing is the medicine for this (Lyrica) causes memory issue so sorry if I’m kinda jumping around. Gotta type when I remember it. I spent the next few months off all pain medications, I went to see my family doctor and he asked how I was doing I told him ok he didn’t believe me. He had me take a depression test and it came back moderate to severe depression. We talked about a couple of things to treat the depression. One is going to a therapist which I can’t afford due to I’m in the process of filing for disability and we only have one income coming in and a $35 copay per visit isn’t in the budget so looks like another pill. So he put me on Cymbalta which also helps with Fibromyalga and it has worked. My Rheumatologist advised me that I should go see a pain management Dr. My first visit to him was a sigh of relief he advised that he doesn’t just give out pain meds and I told him that was fine, I have 4 kids to help take care of. I just want to feel better but I had some major issues with the pain right now like I didn’t even have the strength to lift my left leg off of the ground. So he wanted me to read some information he gave and to RX to get an MRI and an EMG then come back in a month. I did, then we discussed a lot and he advised me to see a shoulder specialist because he suppects the artiritis is also in my shoulder and to get an MRI of my neck because it is starting there also. He also advised me that I had Degenerative Disc Disease. He didn’t have the results of my EMG yet but the Dr at the place I had it done advised me that L5 had damage which controls the top of your foot and outside of your left leg and S1 has some also and the controls the underneath of your foot and the inside of your left leg. This is crazy, I feel like I have to shake my leg to wake it up. I have lost most of the strength and functioning in my left leg I have to wear a brace which the Dr that did my EMG said is the wrong type ( I was given the brace by a person that works for my back surgeon). I should have one molded to my foot.
Now, normally people would be devastated upon hearing they have a lifelong debilitating disease. The way I get thru this I look at as this is the chapter that God has for my right now. I don’t question His plans for me, I just go with them . I was actually relieved. Because I knew I wasn’t crazy. I knew I wasn’t faking it. It’s pretty hard to fake 15 years of back pain. Currently, I am on Symboni. I inject myself once a month. This is a new med. I have taken Embrel and Humeria prior and it didn’t work for me. It doesn’t get rid of the pain it kinda dulls it but I’m hoping this new one works better than the first two. I still have the inflammation in my hands and knees and the pain in the left leg. My neck being stiff and sore is a new pain and my upper back is also a new pain. I’m really praying that this works on the new pains. If I try to do any type of physical activity I get tired really fast and I’m sore for a couple of days. The only time I feel okay is when I don’t do anything at all. I do fear getting bamboo spine. Over the last few weeks I have been getting a pain in my chest and I have had shortness of breath for a while now. I see the Rheumatologist in a couple of weeks. I am worry about the spondylitis attaching to the joints in my rib cage. If this is indeed true that means my chest will eventually seize up and my lungs won’t be able to expand like a normal person. I am 40 years old. I can only lift 25 lbs, I can’t sit for too long without being in pain. I can’t can’t bend over very much, nor can I bend to the side. I can’t turn my neck too much without being in pain. I am on an immune suppressant which leaves me tired all the time. When I tell people what I have I get the same response, “Huh?”. It’s frustrating to have this disease that impacts my life so much, yet no one has a clue what it is. Even though I get frustrated, I am focused. I won’t let this beat me. I am praying they will find a cure. Who knows? GOD does. It has the potential to be extremely debilitating. However, I can’t focus on that. I have 4 beautiful kids to focus on. I try to stay active and I wanna start walking but it’s really a struggle. It is difficult because I am limited but I do what I can. I am looking at the disease like a blessing in disguise. Instead of having to put my kids in daycare I am able to be home with them and be a stay at home Dad. . I also have the assistance of my great kids and wife. I understand what I have. Now I just have to find what I call, a new “normal” I have to learn to live within it and also figure a way to not let it defeat me.
I am Bill Havens and I’m living Ankylosing Spondylitis!
Bear, Delaware United States of America