Hi everyone! I realize I haven't been here in AGES, so I figured I'd update. A lot has happened in the past several weeks. First of all, I have officially been diagnosed with AS (ankylosing spondylitis). I just saw the rheumy yesterday and he confirmed the diagnosis. I started Diclofenac yesterday and he is sending me for more bloodwork and an MRI of my SI joints to check for the extent of damage/disease progression. I go back in a few weeks to discuss other treatment options, which he said will most likely be Humira.
I had gotten a third opinion with a NS a couple of weeks ago, who happened to be the first doctor to ever mention AS to me. My rheumy said I should thank him, and I really think I'm going to write a letter to express my gratitude. He flat out told me, "Do NOT have another surgery," and I am going to take his advice. He recommended intensive PT and possibly a facet block in the area that is really bothering me. I meet with the PM doc on Monday to discuss that. I have started going to PT twice a week and am feeling very optimistic about it. The PT said that because of the AS, I am likely going to have to continue with the exercises I learn in PT for the rest of my life, in order to maintain mobility and flexibility. She also recommended water therapy as a means of exercise, so I am going to look into that as well. It is a HUGE weight off of my shoulders to know I will NOT be having another surgery. And for a NS to say NO surgery, especially when their biggest revenue is from performing surgery, it was refreshing to hear.
It is bittersweet because on the one hand, I want to just be a normal 29-year old and not be dealing with all of this stuff. On the other hand, it is a relief to finally have an answer as to what's been plaguing me all of these years. And now that I know what I'm up against, I can begin to figure out ways to fight it and maintain my quality of life.
Unfortunately the AS is not the only issue I'm dealing with right now. My BP has remained elevated for a couple of weeks now. My PCP had said he wanted to continue to monitor it while I work on lifestyle modification (aka diet and exercise), however, in the meantime I developed another retinal tear, my 4th actually, in my eye. I went this morning to have it lasered in order to seal it off and prevent it from progressing. I should be used to it by now, being that this is the 4th time it's happened, but it definitely does not get any easier. I honestly started feeling nauseated and lightheaded by the end, but luckily I managed to avoid passing out. In any case, my opthalmologist does not believe the high blood pressure has any relation to the retinal tear, but I do not necessarily buy that. This is the second time this has happened while having issues with high blood pressure. So I called my PCP yesterday, after the tear was diagnosed, and asked him if I could start a low dose medication, while working on diet and exercise. My fear is that if my BP doesn't go down, what if I end up with another tear. He agreed and started me on Norvasc 5 mg daily.
So, that is about it. I have decided that I need a complete overhaul in my life, and I'm not letting the AS diagnosis be the end. For me, this is just the beginning and I am going to take charge of my health and try to get myself into better shape. I had a mini breakdown as my mom and I were walking back to the car today, after the laser procedure. I sobbed and said I was sick and tired of being poked and prodded and doctors constantly finding new ways to torture me. Some days I feel like if it's this bad now, how bad is it going to get when I'm older? However, after crying and venting for a couple of minutes, I felt better and I felt ready to take on the world again. I've been blessed with amazing family and friends, and that is what will help to get me through the tough times.
Anyway, sorry to write a book! As I said, it's been a chaotic 2 or 3 weeks. I hope everyone is doing well, and I truly appreciate all of the support you've given me over these past few months. I will continue to come around as often as I can. My hands have been bothering me a lot these days, and typing is not always the easiest task.