A.S. Face 1821: Robin Nelson
I was diagnosed 21 years ago at the age of 33. I am sure that I had the disease for a good 10 years, maybe longer before the diagnosis. The reason they were able to diagnose me is because I had been going in to my orthopedist for many years with terrible lower back pain. They would take x-rays and not offer me much help – “maybe I had some osteoarthritis going on” and to take some aspirin or ibuprofen. When I went back to the ortho with lower back pain the last time, he went back and looked at my current x-ray compared to the previous ones, and saw the classic AS changes in my SI joint and the lumbar vertebrae. He immediately referred me to a very good rheumatologist who ran bloodwork for C-reactive protein and sed rates. He also got a baseline MRI. All confirmed that I had this “MAN’S DISEASE called Ankylosing Spondylitis.”
[Of course, I thought. I always get the weird stuff. Now I have a man’s disease?]
So, I still see the same rheumatologist and I must say I hate what the medical insurance industry has done to him. I used to go in and change to a gown and he would examine my spine and other areas, press on joints and go over every area that was bothering me and answer every question. He was thorough and caring. Now, I go in, we talk, he spends ONLY 20 minutes with me, doesn’t touch me at all or look at my spine or any motion related issues. I get refills and leave. If I feel I need a different medicine, I tell him. But he at least knows what I have and knows what I have been through and knows me and my attitude towards medications and how I have managed to NOT increase my pain medication dosage for 21 years!! Although right now, I need something else to manage things and I don’t know what that is going to be.
My oldest son was 3 years old when I was diagnosed. I had my youngest son 2 years later. Pregnancy actually helped me. Whatever Human Growth Hormones does to you, it made me feel fantastic! I carried a huge baby (I am 5’3” – well I was. Now I am 5’1.5” – another thing that AS has taken from me) and we delivered him by C-section 10 days early at a whopping 9 lbs. 3 oz. He was going to be over 10 lbs. if I carried him 10 more days.
So, overall I have managed this crappy hand AS has dealt me without much of a blip. I had probably 6 extreme flares, spending 3 days a week in PT and limiting painful activities until I could get out of it. Then I had full remissions and also just the long periods of time when it is there, but it isn’t incapacitating. I would just “buck up” and push on through the pain to be as normal as possible. No one knew except my medical team. My husband knew but didn’t remember until I had a flare and then it was just a back problem at that time, not the progressive incurable disease that AS is.
I didn’t stop because of the pain, that’s for sure. I worked. I ran my own business. I raised my sons. I was class parent, PTA leader, soccer coach. I rode horses, I ran, I swam, I walked, I water skied, I hiked the mountains and tubed the creeks. I fished and boated and LIVED! I cleaned the house, I renovated kitchens, I painted rooms, stained furniture, assembled furniture, planted gardens, built forts.
I was NOT going to let this disease, that created a battle inside of me, that thought I was the disease and sent my own immune defense to attack one of the most vital components of my being, my spine! And then other locations when AS was really feeling its Wheaties… my shoulder, my elbows, my knee, my heel, my eye. I stopped trying to worry about where it might pop up next.
So that was my 21 years with AS so far. I am still here. I am blessed that I kept my stubborn, or positive, or “Bleep you AS” attitude and LIVED fully through it.
I THINK I SHOULD STOP HERE!! THAT IS WHAT I THINK BECAUSE THE REST IS DAMN DEPRESSING.
These last few months to a year, I am not doing so well. I got on Cosentyx as soon as it was approved for AS to try to stop the disease progression that has been going on this past year or so. I think it may have slowed it down, but I am not sure yet because I am in the worst place I have ever experienced, so much that I feel pretty certain it is not a flare I can come out of, but the result of the years of progression that will stay with me now until I receive the final pain relief. My medical team and I put together a plan and I was hopeful, but since it seems to work on some days, but not others, I think it has been more of an exercise in symptom management. The meds I am on are raising my blood pressure. I can’t walk very well on most days. I can’t sit very well, I can’t lay down very well. I have been typing for 15 minutes and the pain is overwhelming me, so I have to take a break. Unlike with other flares, in which my pain would improve as I became active, my pain now gets so much worse the more I move. I feel that I am truly broken. And, to make things worse, my insurance company has denied coverage of a LESI, one of the pillars of my current treatment protocol, that has allowed me to continue minimally functioning. So, what is left? Why would they do that? Am I supposed to finally just start taking more pain medications? Oh no, wait, I probably won’t be able to do that either because of the all the new restrictions on prescribing pain meds, because you know, I am a criminal for having AS.
But you know, I still refuse to stop trying. In November, I am heading to the Johns Hopkins Arthritis Center to see a rheumatologist who focuses on AS. I desperately hope that we can develop a plan for IMPROVEMENT. I hope that I don’t have to begin the downward spiral of surgery that results with AS, where one spot is improved but with active disease like I have now, two more spots develop requiring surgery on those two spots which then produces two more spots that require surgery and finally you probably end up in a wheel chair. I honestly have not found a single person who has had a long term good experience with the surgical route. None of my current medical team is pushing that option either. But it may be all I have to stay out of a wheel chair a few more years.
Anyway, I don’t know how AS has changed who I am. So many things have shaped me. In earlier years, I was more willing to accept it, to deal with it, to walk with it. Now, I am angry. I should have so much FUN ahead of me. My kids are out of the house. My husband travels a bit to wonderful places. We live in a beautiful place. I want to enjoy life. Instead I am stuck on the couch, where I sleep, because I can’t roll over and get out of my bed (maybe if I had one of those hospital pulls that you can pull up on…). I just want more time to be almost normal. I still have hope that I will get it.
I was diagnosed 21 years ago at the age of 33. I am sure that I had the disease for a good 10 years, maybe longer before the diagnosis. The reason they were able to diagnose me is because I had been going in to my orthopedist for many years with terrible lower back pain. They would take x-rays and not offer me much help – “maybe I had some osteoarthritis going on” and to take some aspirin or ibuprofen. When I went back to the ortho with lower back pain the last time, he went back and looked at my current x-ray compared to the previous ones, and saw the classic AS changes in my SI joint and the lumbar vertebrae. He immediately referred me to a very good rheumatologist who ran bloodwork for C-reactive protein and sed rates. He also got a baseline MRI. All confirmed that I had this “MAN’S DISEASE called Ankylosing Spondylitis.”
[Of course, I thought. I always get the weird stuff. Now I have a man’s disease?]
So, I still see the same rheumatologist and I must say I hate what the medical insurance industry has done to him. I used to go in and change to a gown and he would examine my spine and other areas, press on joints and go over every area that was bothering me and answer every question. He was thorough and caring. Now, I go in, we talk, he spends ONLY 20 minutes with me, doesn’t touch me at all or look at my spine or any motion related issues. I get refills and leave. If I feel I need a different medicine, I tell him. But he at least knows what I have and knows what I have been through and knows me and my attitude towards medications and how I have managed to NOT increase my pain medication dosage for 21 years!! Although right now, I need something else to manage things and I don’t know what that is going to be.
My oldest son was 3 years old when I was diagnosed. I had my youngest son 2 years later. Pregnancy actually helped me. Whatever Human Growth Hormones does to you, it made me feel fantastic! I carried a huge baby (I am 5’3” – well I was. Now I am 5’1.5” – another thing that AS has taken from me) and we delivered him by C-section 10 days early at a whopping 9 lbs. 3 oz. He was going to be over 10 lbs. if I carried him 10 more days.
So, overall I have managed this crappy hand AS has dealt me without much of a blip. I had probably 6 extreme flares, spending 3 days a week in PT and limiting painful activities until I could get out of it. Then I had full remissions and also just the long periods of time when it is there, but it isn’t incapacitating. I would just “buck up” and push on through the pain to be as normal as possible. No one knew except my medical team. My husband knew but didn’t remember until I had a flare and then it was just a back problem at that time, not the progressive incurable disease that AS is.
I didn’t stop because of the pain, that’s for sure. I worked. I ran my own business. I raised my sons. I was class parent, PTA leader, soccer coach. I rode horses, I ran, I swam, I walked, I water skied, I hiked the mountains and tubed the creeks. I fished and boated and LIVED! I cleaned the house, I renovated kitchens, I painted rooms, stained furniture, assembled furniture, planted gardens, built forts.
I was NOT going to let this disease, that created a battle inside of me, that thought I was the disease and sent my own immune defense to attack one of the most vital components of my being, my spine! And then other locations when AS was really feeling its Wheaties… my shoulder, my elbows, my knee, my heel, my eye. I stopped trying to worry about where it might pop up next.
So that was my 21 years with AS so far. I am still here. I am blessed that I kept my stubborn, or positive, or “Bleep you AS” attitude and LIVED fully through it.
I THINK I SHOULD STOP HERE!! THAT IS WHAT I THINK BECAUSE THE REST IS DAMN DEPRESSING.
These last few months to a year, I am not doing so well. I got on Cosentyx as soon as it was approved for AS to try to stop the disease progression that has been going on this past year or so. I think it may have slowed it down, but I am not sure yet because I am in the worst place I have ever experienced, so much that I feel pretty certain it is not a flare I can come out of, but the result of the years of progression that will stay with me now until I receive the final pain relief. My medical team and I put together a plan and I was hopeful, but since it seems to work on some days, but not others, I think it has been more of an exercise in symptom management. The meds I am on are raising my blood pressure. I can’t walk very well on most days. I can’t sit very well, I can’t lay down very well. I have been typing for 15 minutes and the pain is overwhelming me, so I have to take a break. Unlike with other flares, in which my pain would improve as I became active, my pain now gets so much worse the more I move. I feel that I am truly broken. And, to make things worse, my insurance company has denied coverage of a LESI, one of the pillars of my current treatment protocol, that has allowed me to continue minimally functioning. So, what is left? Why would they do that? Am I supposed to finally just start taking more pain medications? Oh no, wait, I probably won’t be able to do that either because of the all the new restrictions on prescribing pain meds, because you know, I am a criminal for having AS.
But you know, I still refuse to stop trying. In November, I am heading to the Johns Hopkins Arthritis Center to see a rheumatologist who focuses on AS. I desperately hope that we can develop a plan for IMPROVEMENT. I hope that I don’t have to begin the downward spiral of surgery that results with AS, where one spot is improved but with active disease like I have now, two more spots develop requiring surgery on those two spots which then produces two more spots that require surgery and finally you probably end up in a wheel chair. I honestly have not found a single person who has had a long term good experience with the surgical route. None of my current medical team is pushing that option either. But it may be all I have to stay out of a wheel chair a few more years.
Anyway, I don’t know how AS has changed who I am. So many things have shaped me. In earlier years, I was more willing to accept it, to deal with it, to walk with it. Now, I am angry. I should have so much FUN ahead of me. My kids are out of the house. My husband travels a bit to wonderful places. We live in a beautiful place. I want to enjoy life. Instead I am stuck on the couch, where I sleep, because I can’t roll over and get out of my bed (maybe if I had one of those hospital pulls that you can pull up on…). I just want more time to be almost normal. I still have hope that I will get it.
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