Wednesday, December 16th, 2009:
So, it’s been almost 2 weeks since my first set of Remicade infusions, and about 3 weeks since starting Methotrexate. I know that the Methotrexate is slow-acting, but from the way people talked, I thought that Remicade would give me some signs of improvement rather quickly. It hasn’t.
In fact, yesterday I had one of my “bad” days. Both my RA *and* Celiac symptoms were a-flarin’ away. Today I’m feeling slightly better, and to me any improvement is good. But, I’m finding myself actually looking forward to Monday’s Remicade treatments. (Is this what my life has come to? Haha.)
I guess patience IS a virtue as I’d mentioned in my previous Journey to Wellness entry. If you live with chronic illness,
you almost have to develop patience, for there is often no other option.
Being chronically ill really IS a full-time job in and of itself!
For example, today I had an 11:10 appointment to get bloodwork done. I sat in the waiting room for almost an hour before getting taken. While I was waiting, I pondered how much of my life had been spent in doctor’s offices, hospitals, or waiting rooms, particularly in the past year. It made my brain hurt to think about it! It also was rather depressing!
I’ve now found ways to occupy myself in waiting rooms. Books, magazines, and sometimes even my laptop. The best thing I’ve purchased for myself in the last year or so has been my BlackBerry. Thanks to that little handy-dandy device, I can text, tweet, email, and even get work done while sitting in the dreaded waiting rooms!
That is, when my hands and fingers are cooperation. Yesterday, I actually had to call off work because I couldn’t type. My hands were in such pain, and so stiff, that I just couldn’t bear it. No typing, no texting, no Twittering, or Facebooking….let’s just say that my day consisted of napping and watching deliciously bad television! I was bummed out because I also had wanted to write out Christmas cards last night but obviously could not do that, either! Oh, well.
I suppose I can’t say that the meds aren’t helping yet at all. First of all, the Methotrexate and Remicade are pretty new, still! And while I’ve seen no noticeable improvement from the daily Prednisone I’ve been on for about 7 months, I have been having 2 or 3 “good” or at least “OK” days per week, which, in my mind, is good. This past weekend, I had a few good days in a row – yay! Unfortunately, I think yesterday was my “crash” day that I’d talked about in Entry #2. It seems that these crash days are unavoidable and the more that I talk to others with autoimmune illness, it seems that I am not alone!
So it’s all a waiting game. I’m on the waiting list to be seen at the Mayo Clinic. I’m waiting for my meds to work, waiting to feel better. Waiting until after the holidays to try a new (almost-vegan!) diet.
Oh, and possibly waiting for a full KNEE replacement?!? Yes, you read that correctly. I’m 26 years old but saw Dr. Ortho last week, and it seems that my options for my right knee problems are: keep on getting steroid shots in the knee (which is a “band aid” of sorts and will not correct the structural/mechanical problems of my knee) or, get a full replacement, which, he doesn’t want to do but is the only other option. He claims that the disease in my knee is far too progressed to do a “simple” arthroscopic surgery and that no orthopedic surgeon would do one on my knee. A synovectomy may be an option but there are so many issues going on in my knee that it might not fix the main problems which are locking and pain. I got a Cortisone shot on Thursday but it left me in extreme pain the entire night and into the next day. Saturday, it was back to its old tricks and locked up 4 times in one day! So, we’ll see. I’m going to seek out a second opinion after the holidays (I guess he’ll be named Dr. Ortho the Second) and take – you guessed it – a “wait and see” approach to that, too!
Sometimes I feel like I’m walking (limping?) in place, on a treadmill that is neverending but never really going anywhere. My calendar fills up with doctors appointments and has lessened in social engagements. This morning, I got blood tests and labwork done; tomorrow I get a field vision test to look at a bull’s eye effect 
that I have on my macula and to again rule out multiple sclerosis. (The macular halo effect that I have is called bull’s eye maculopathy and is probably from past arthritis meds such as Prednisone. However, my rheumatologist is puzzled that it has never reversed itself or improved since being taken off this medication 5 years ago.) Next week I go for Remicade infusions and rheumatologist appointment. I see my gastroautoimmune doctor and naturopathic in January, and, hopefully, Dr. Ortho II.
When will all of this time and effort (not to mention money!) put into feeling better actually make me feel better?
Who knows! The important thing, I think, is that I’m trying to stay positive, I’m trying everything from the most expensive high-end drugs to the most simple natural and homeopathic remedies, and am exhausting every avenue. I’m always super on-top of my health, and always have been. My primary care doctor, (we’ll call him Dr. PCP, I guess, to be nice) basically told me in so many words during the summer of 2008 that I was a hypochondriac. Well, wasn’t he taken aback when I told him during the next visit that I had Celiac Disease, and a couple visits after that, that the Celiac (that he would have never caught on his own, since I took it upon myself to go to an endocrinologist who diagnosed me initially) led to other complications and was not responding to the gluten-free diet and that I possibly had fibromyalgia AND my rheumatoid arthritis still never went into remission? My point here is that it’s all worth the effort. Stay on top of your own health and wellness, for when it comes to health, I think you can never be too careful. Sometimes, you just know things that doctors may not be able to see. So stay proactive and positive, and keep the faith! Try, try again –
it’s the only way anything can ever get accomplished!
So I wanted to leave you all with another (short) story before I end Entry #3 in my Journey to Wellness. I sit here at work with my hands shaking from meds, back and hips in pain, legs feeling like they are on fire, head hurting, and nauseous, but still with a SMILE on my face as I share this story with you! This past Saturday was our Jingle Bell Run/Walk 5K in Pittsburgh. After the race was a Juvenile Arthritis Awareness Session & Family Day holiday party at the Carnegie Science Center. My lovely coworker Allison who organized the event asked me to speak at the parents’ awareness session to share my story of growing up with JRA and to intro the doctor who was the main speaker. I happily obliged.
I was strangely nervous beforehand but I got up on that stage and shared my story. I talked about the social struggles of being a young person with chronic disease, how my physical ailments cut my softball and cheerleading careers short, but how it allowed me to open up to my love of writing. I spoke about the importance of taking care of yourself and having a great support system to lean on, etc. After the event, I was approached by a mother and daughter. The girl was 17 and recently diagnosed with Myositis, a rheumatic disease much like Rheumatoid Arthritis. She was struggling with insecurities from facial puffiness due to Prednisone, hair thinning from Methotrexate, and feeling like an outcast during her senior year of high school. I could relate on many levels. Her mother thanked me with tears in her eyes as we swapped stories. I had 3 others sets of parents stop me after the event to thank me for speaking. One man called me a “hero” and an “inspiration” and one other gentleman said my speech made him want to become an advocate here at the Arthritis Foundation for his daughter’s sake. I went home that day in the best mood I’ve been in, in a long time! It was truly so very rewarding that by sharing my experiences – both positive and negative – could encourage/help/touch others so very much. It made me feel better, and it gave me some strange sense of security and hope. Maybe I learned the same message I was sending them, which was that when dealing with arthritis and other autoimmune illnesses that “you are not alone!”
It was one step on my “Journey to Wellness” that I will never forget!
With that, I’ll say goodbye and leave you all with a quote that I’m going to try to begin to live by: “Stop thinking in terms of limitations and start thinking in terms of possibilities.” ♥
Thanks for reading and for joining me on my Journey to Wellness. I will surely keep you all posted and will continue updating my progress! I wish you all the best of luck in YOUR own personal journeys, too! Please share YOUR thoughts and feedback! Any thoughts on total joint replacement for young adults? How long did it take YOU for your meds to start working? Anyone else get tremors/shakiness from their medications? Do you ever find it hard to be a “patient” patient? Any advice to others who are struggling to write out holiday cards this season? I’d love to hear all of your thoughts and feedback! Please, share your stories! Comments welcomed & encouraged – post on here or drop me an email!
Take Care & Be Well,
-Ashley Boynes
Community Development Director
Western Pennsylvania Chapter
voted, “Best Blogger in Pittsburgh!”
Click here for Entry # 1 in Ashley’s Journey to Wellness
Click here for Entry #2 in Ashley’s Journey to Wellness
And don’t forget to read/comment on our other recent Rheum for Wellness blog posts on mind-body healing & positivity, how to give to the AFWPA this holiday season, and more!
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