I don't think I have ever been so happy to see a long weekend arrive as I am today. It's been a long week. Actually, it's been a long month. As I mentioned in my NYC post, I received a phone call from my doctor, and the news was not great. She gave me a preliminary diagnosis of Rheumatoid Arthritis (RA) and referred me to a Rheumatologist for further testing and a treatment plan. The news left me reeling, to say the least, and I was very happy to have the constant company of Alli throughout the weekend.
I don't expect anyone to know what RA is - I knew very little about it until I started to research it after finding out that it was a potential explanation/diagnosis for why I have felt the way I have felt this spring/summer. To explain what it is, I am going to cite the words of Kelly, author of the site RA Warrior: Rheumatoid Arthritis (RA) is "a systemic autoimmune disease which attacks primarily, but not solely, the joints. It is an incurable disease affecting the synovial tissues which surround joints and similar lining tissues of certain organs. Through a very complex process, various kinds of immune cells attack and eventually destroy otherwise healthy tissues."
How I knew something was wrong...
As anyone who has read this blog since April knows, I have been plagued by foot injuries, one which was diagnosed as a stress fracture, another which was diagnosed as a hairline fracture. I accepted the first diagnosis, but the 2nd injury in my left foot just seem "off." I had been doing very little and it just did not make sense that I would have another fracture so close to the first.
But that was only part of it. As early as April, I had been feeling pain in some of my joints. I dismissed it as first as my body's reaction to the amount of stress it was under due to CFA preparations, or I thought it was my body's way of adjusting to the boot. But then the pain in my arms and hands got so bad, it was difficult to do things like put on clothes, pick up my suitcase, open jars, or take the cap off of my chap stick. I kept thinking - what is wrong with me or what have I done to cause all of this strange pain. When I would get out of bed every morning, everything would hurt and I honestly felt like I was 80, not 32.
I saw a GP in late June as the pain in my arms was getting so bad, it was really getting hard to do day to day tasks, and she diagnosed it as a case of tendinitis and increased the dosage of the anit-inflammatory that I was on for my foot injury. But the arm pain would not go away and eventually I had to discontinue the pilates sessions because the pain in my arms was too bad for me to do anything. At this point I started to wonder what, if any, physical exercises I'd ever be able to do again. While pilates is challenging, it's gentle, so if I couldn't do that, what would I ever be able to do to stay active/fit?
I think the real tell-tale sign was the swelling in various joints - the worst of which was the 3rd finger of my left hand.
|This is what my hand looked like|
|This is what it should look like|
I saw my rheumatologist yesterday and he confirmed the diagnosis by doing a physical examination of my joints, asking me a lot of questions, and reviewing my blood work (which showed abnormal levels for a couple of different labs). He is very optimistic and feels we caught this early and that there is very little chance of any permanent disfigurement or deformity. He sent me home with a bunch of literature to read so we can make a decision about how to treat this. He recommended a drug that is actually used to treat some forms of cancer - I would just take it in a much, much lower dose so my side effect should be more tolerable than someone who is using it as a chemo-treatment for cancer. There are a long list of side effects/risks that I know I need to take with a grain of salt, but it's still a scary decision for me. I have talked to one person on this drug and she said it has been a miracle drug for her, so it was at least nice hearing one person's testimony in favor of this drug.
I won't bore you with the details of the appointment, but I will say that while I was happy with his thoroughness/amount of time he spent with me, I was very disappointed with his demeanor. Maybe I expect too much when I expect a specialist to show some compassion. I just felt like he was very dismissive of certain things and unwilling to talk at length about other things (like my multiple fractures - he did eventually acknowledge that RA may have caused some osteopenia, making me more susceptible to stress fractures. Hopefully the bone density scan I am having next week sheds some light on this). I have decided to get a 2nd opinion, not because I don't trust the treatment plan he is recommending, but because I need to establish care with a doctor that I feel comfortable talking to. I am sure he sees many who have more advanced forms of this disease, so seeing someone young with an optimistic prognosis impacted the way he treated me. But while he deals with it everything day and is probably a little bit "numb" to the brevity of the diagnosis, it's all new and overwhelming and scary for me, so an "I'm sorry you are dealing with this" or an acknowledgement that this is overwhelming would have helped.
How I am feeling...
Honestly, I feel cheated. I feel like I have done all the right things - I exercised (prior to the fractures), I eat healthy, I don't smoke, I rarely drink. But none of that seems to matter.
I feel scared. I don't know how my body is going to react to the drug I ultimately choose to take. I don't know when/if I will return to running, or how far I will be able to run when I do return to running.
I feel like it's all too much when coupled with the other challenges I have faced this year. I just wonder - when is the string of crappy things going to end? I keep thinking it won't get worse, but then it does. This year has just worn me out.
But, I feel a little bit of a sense of relief because now I have an explanation for why I have felt so crappy all summer. I have not told many people about the pain I have been feeling or the exhaustion I have experienced because I felt I had exhausted the patience of others when talking about all my foot issues. I told a couple of people but mostly I would lie awake at night and wonder, "What is wrong with me?" So having an explanation of it - and hope that the pain will go away eventually - is somewhat of a relief. I just wish the explanation wasn't a chronic disease that I will have to manage for the rest of my life.
What I need...
People keep asking me what they can do, but since all but 2 of my close friends live far away, there isn't much I can ask for at this point besides your thoughts and prayers as I process this. I do need friends/family to acknowledge that this is a big deal and accept that right now I can't be all "rah rah, they caught it early, everything is going to be fine." I know eventually I will feel that way but right now, I am sort of grieving the fact that my life will be forever changed. I am not going to give into these feelings of grief forever, but I will for awhile.
The last thing is that I need people to accept and respect decisions I make about how I go about treating this disease. I am relying on the expert advice of specialist who live, eat, and breath RA every day. I appreciate the research family and friends will do on my behalf and will look at things they are suggesting I do, but ultimately, I am going to rely on the advice of my Rheumatologist. Right now, I am not open to holistic approaches to treating this disease. I would prefer to start off with an aggressive treatment so I can get back to living a more normal, active lifestyle ASAP. Once the disease is under control, I would be more open to seeing what the alternative treatments, but right now, I'm not there yet.
With that, I will bring this novel of a recap to a close. I want to emphasize that while I am pretty down/overwhelmed/frustrated, I do know I will be ok. I have been encouraged by stories of others who are living with this disease and leading normal, active lives. I hope that will be me soon.
I'll close with a quote that my Aunt Betty embodied with the way she lived her life while battling cancer. I am going to try to take a page from her book and try to adopt this approach to life as well. Lord knows, 2013 and Charlotte have provided sufficient rain for me to dance in.