Today, I leisurely strolled, cane in hand, into Affinity Health Center in Menasha, Wisconsin. Within 5 minutes of walking through the doors I was already sitting in the patient exam room and waiting for my Rheumatologist. I have been doing my best to live day by day and take my arthritis as it comes and goes; but I have been having some inklings about what my future may bring. A light has been shined on what very well could happen by the end of 2015.
My new rheumy is great, she understands me. She can tell that nothing is going to stand in the way of my goals. Therefore, she does not stop me or try and persuade me out of my ambitions. I think that is the MOST important aspect of a good specialized physician. If I had a Dr. that was telling me I shouldn’t be doing the things that I love… I would no longer have that Dr. I am not saying that a Dr. shouldn’t advise against certain sports or activities in life for the best interest of their patients. My pediatric rheumy told me, when I was 14, that if I kept playing soccer as much as I was I’d be in a wheelchair when I was 25. He then told me that he cannot stop me doing what I love because he knew how important the sport was to me. My pediatric rheumy is an angel to me because he new he couldn’t hold me back from what I loved. My new rheumy, though I have only seen her twice, is already showing that she has my best interest at heart!
What happened at the Dr. office though? Well, she is doing her best to try and get my arthritis to be as minimal as possible. That is tough though, because it requires the guidelines that I will be in Europe in just over 1 month for at least 2 and a half months. That means I can’t be on Biologics because I can’t keep them cold or have monthly check ups. That what I bring has to be minimal because I will only have 2 panniers and a backpack. So, alongside my methrotrexate and naproxen I am starting Sulfasalazine and Chromieoslija;slkdhbg IDK how to spell that one and I don’t have the prescription yet. Also, I will have emergency Prednisone if it starts to get real rough. Wahoo! a new cluster of pharmaceuticals!
Wait, there is more. My hip looks pretty bad, via x-ray. Bad enough that the possibility of needing a hip replacement has been on my mind. I asked my rheumy and she said that it is best if I go and see a surgeon who can take a look and give me a better idea of possibilities. I looked and her and said that I am probably going to need a new hip. She said yes. So, before I jet off to Europe I get to visit a surgeon and make some plans. My rheumy has the full intention of me being able to make my journey through Europe and she says its best to see a surgeon now to plan for later this year.
I guess its ironic that my Pediatric Rheumatologist told me I’d be in a wheelchair by the time I’m 25. I can only laugh that I will more than likely be bionic and have a rehabilitation that requires a wheelchair… when I am 25. With this I guess I have contradicted myself about limitations. However, I have no regrets! This hip arthritis is NEW. I have had it there for 9 months TOPS! My P. rheumy said it would be my ankles that gave out on me. Not everyone is right, but he nailed that wheelchair on the head!
I am laying in my bed and wondering what this means for my future. The best part is that I see no downsides. I have pain in my hip that is due to arthritis. It is causing pain my knee, which is also arthritis. Once I get a new hip I will once again be able to do the things in life I really love. I will be able to play a round of disc golf, BIKE, GO HIKING, and a whole sleuth of other activities that I am not fully able to now. The best part is? I am still going to Europe! Bring on the pain, bring on the challenge! I might as well get what I can out of what I have now, otherwise I’m just bidding my time.
If there are parents who are reading this and just got scared that I am only 24 and will probably need a new hip soon. That’s cool, you have every right to be scared and I don’t blame you. I just want ya’ll to know that I am glad I never held myself back from my passions. I am fascinated by myself for what I have accomplished in life and its because no one told me I couldn’t, they only told me I could. If I was comfortable with a hip that worked right now, I’d probably be bored with no stories to tell. Instead, I’ve wrecked myself a bit through my life, because of it I am where I am. Which is to say, HAPPY. I knew things like this could easily happen due to my systemic JIA. Instead of letting that rule me, I overcame those fears. I can say that I am living a life where MY DREAMS ARE COMING TRUE.
Thanks for reading my mumble jumble words. Please comment with your thoughts because I want to know what you have to say! Share this blog too, if ya want to!