This month, I recognized 10 years since my Rheumatoid Arthritis (RA) diagnosis. It's obviously not a cause for celebration and is more of a marking of what all my body had been through and all I've learned over the last 10 years. For those newer to my blog, I found out I had RA in August 2013 when I was living in Charlotte (I was relocated for my job). I had been diagnosed with stress fractures that spring shortly after I relocated to Charlotte and then the pain kept extending to different areas of my body and it became more intense. I was in a walking boot for a stress fracture on one leg and then 3 months later, had pain in the other leg and the podiatrist thought I had a stress fracture in the other leg. I knew something wasn't right and had been to the doctor multiple times that summer. I sort of wrote the pain off as "getting older." But my parents were kind of alarmed when I stayed at their lake home in early August and needed my dad to carry my (small) carry-on suitcase upstairs. I wasn't physically able to do that which is odd for a healthy 32 year old woman.
A blood panel and physical examination showed that I had RA. I happened to be in NYC visiting a friend when my primary care doctor called to tell me that my blood work showed that I likely had rheumatoid arthritis. I can still envision myself walking around Washington Square Park, crying, and trying to make sense of it all. It was probably best that I was visiting a friend that weekend because she was so kind and supportive. Otherwise I would have been alone in my apartment in Charlotte which was so not my happy place (long time readers will recall that my time in Charlotte was a very challenging time in my life).
The last 10 years have been quite the journey. There have been times when my disease was well managed. In fact, when I moved to Minneapolis and established care with a new Rheumatologist, he commented that he wasn't sure that I actually had RA! Eventually I got a flare so it was evident I had it but I wanted to say - have you not looked at my medical records that were sent from Charlotte? I eventually changed doctors and found an amazing female rheumatologist. This spring I told her about my doubtful previous doctor and his doubt about my diagnosis and she was FLOORED by that encounter.
There have been times when my disease was not well-managed. Like during my pregnancies. I got so many steroid injections during my pregnancy with Paul that the PA drew a picture of my hands and would mark off where we had done an injection so I could keep track of when I might be able to get another injection (you need to wait at least 6 weeks before injecting a joint again). My pregnancy with Taco was so different as it all occurred during the pandemic when only essential staff was in clinic. So I was only able to get 2 steroid injections and had to get by with high doses of oral steroids otherwise. I had flares so many places - my hands, elbows, hips, knees, and even my jaw!
My disease went back to not so well managed last fall but I think/hope we are getting back to a well managed point. It's required maxing out my dose to methotrexate (MTX), which is a chemotherapy drug, but I've tolerated it well overall. I switched over to an injectable form of the drug this week which means I have an injection weekly and every other week I have 2 injections - MTX and my super expensive Humira. I'm hopeful we can drop some of the other medications I'm on right now once we're sure the MTX is working so we can decrease my pill burden. I currently take 9 pills/day, split between morning and night, for my RA. It's a lot and every time I fill my days-of-the-week pillbox (with am and pm slots) I feel like such a senior citizen! No shade on senior citizens - it's just that it's not ideal to have so dang many pills to manage.
When I was at my parents' lake home at the end of July, I had coffee with my cousin who is like a sister. She asked about my RA and shared a story about a time I shared a hotel room with her when I was home in the summer of 2013. It must have been the same trip that I stayed with my parents at their lake home. She said she vividly remembered that I could not open the door of the hotel room - the reason I couldn't open it is because I could not grasp anything since I had flares in my fingers and I didn't have the strength to pull the door open because of flares in my elbows. She said she was so terrified that something terrible was wrong with me. So I guess I am glad that my health issue was figureoutable and treatable and hasn't had long lasting effects. The amazing array of drug options have prevented permanent joint disfigurement.
So I recognize this diagnosis anniversary with mixed emotions. On one hand, I am lucky to be as healthy and active as I am. But on the other hand, I'll always have to take my RA into consideration. That means prioritizing sleep and listening to my body when I am tired. That is something we all should do but if I don't, I will pay for it. I'm not operating on a level playing field for my peer group and I have to frequently remind myself of that when I'm overtired or getting a flare. I just hope and pray neither of my kids end up with this, or a different autoimmune disease, but time will tell.
17 comments:
Thanks for sharing your story, Lisa. I've known portions of it before, but this provides a wider angle on your challenging experience.
I can see why this is a bittersweet time for you. I'm so proud of you for prioritizing rest and recognizing the limits of what your body can do in light of all you're having to overcome physically.
I hope the current treatment regime works well and you feel like your symptoms are kept in check moving forward. And I'm so sorry you had to deal with a "doubter" in terms of your medical team. How frustrating and WRONG.
Hugs <3
Oh, I'm so sorry to hear those stories about how much pain you were in before you got diagnosed. It must have been so hard for you and your family members. I'm so glad you got a diagnosis and have had treatments that help. I do wish you were 100% healthy, but it seems like this is the best outcome that could have happened, all things considered!
I think an anniversary like that is to be recognized if for nothing more than to look back at how far you have come. And you have come a long way, doing many things that at one time were a challenge to do. I say well done Nothing "happy" about this anniversary but it is a powerful recognition.
Wow, RA is such a painful disease, it sounds like. I'm glad you have it managed, but for a young woman unable to open doors...well, I'm glad you have it managed now. And I suppose it forces you to really take care of your body and to not take it for granted, all the things you can do and activities you enjoy. I'm not glad you have it obviously but I'm glad you have the diagnosis to do what you need to do to keep it under control.
I've never heard of RA before I read on your blog. I'm surprised that you have it since you are so young, but I guess as autoimmune disease it doesn't matter the age. you've done tremendously well to manage it and carry on a busy life with small kids. Finding the right doctor is so important and I've learned to listen more to my guts when meeting new doctors. if I'm not convinced, then I'll search for another one. Trusting the process of treatment is so important.
I hope technology advances can help you to manage it even better in the next 10 years.
I remember so much of this, but there was so much I didn't know! What a painful process to getting diagnosed and then facing the true reality of what an autoimmune disease like this would have on your life. <3
It's hard to know the true emotional cost of a disease like this when you have to constantly be vigilant about triggers that could upset your precarious immune system, unable to do the same things others can do. I'm glad you have a good relationship with your doctor now - a relationship like that is so crucial when dealing with a chronic condition!
I remember being with you in Charlotte when you were having your stress fracture period; that was stressful, no pun intended! That sure was a year that would be good to write off, eh? I am glad you were in NY when you got the diagnosis, as it was much better than being alone in Charlotte and both the company and the location probably helped keep you from the very deep emotional cave (even though it was still very hard).
Hopefully the AI bots will develop a wonder drug that you just have to take once in a while and the future will not consist of so many pills and/or shots!
I read your post with great interest. Sending out wonderful, white energy to you as you live with RA. It seems to me that you are doing well. I honestly don't even know what to say except thank you for the description and I hug you virtually. Ten years... Many blessings your way.
Wow, 10 years. Definitely not a reason for celebration, but a reason for recognition of what you've been through and how you have prioritized your health over time. I am so glad you have also learned to advocate for yourself. The healthcare system can be quite intimidating when you're dealing with a chronic illness. I do hope the new regiment works well for you.
First of all, I can see why you don't look back fondly on your time in Charlotte- it sounds pretty terrible.
I just had a client today who has been managing Type 1 Diabetes for years, and we talked about how autoimmune disorders seem to be getting more and more common. Yes, I hope your kids don't get this, but there will probably be better and better treatment options as the years go on- which is good news for you, your kids, and anyone else who ends up with RA. i'm sorry you have to deal with this, but you have a great attitude. You really seem to enjoy your life- your kids, job, husband, friends, the traveling and activities you do. It's easy (as a blog reader) to forget you have a condition like this to manage. I hope the new medication combo works well for you!
I am so glad it sounds like you are moving into a phase of good management and that you like your current doctor. What an extra layer for a pandemic pregnancy!!!
I also remember this diagnosis so well. Man 2013 was a rough year for you. I am so glad that you have figured out how to manage this and you do live a very healthy and active life despite it, but I'm also sorry you have to deal with this crappy diagnosis!
UGH, RA! I have it as well, diagnosed a year after you. I remember that first flare, that lasted a long time. It hurt my wrists to brush my hair, or turn a door handle. My company was doing layoffs, and my husband suggested that this might be a good time to look for a new job. I started crying, thinking, "Who would hire me? I would come hobbling into an interview on painful feet, and then I wouldn't be able to shake hands, etc." Looking back it may not have been an issue, a new company might have been perfectly willing to hire me, but at the time it was really scary. I remember my first night on prednisone, turning over in bed in the middle of the night and thinking, "Oh goodness, that didn't hurt much!" Like you, mine is now under control. Thank goodness.
That's interesting about your pregnancies, I know a lot of women go into temporary remission while pregnant, and then flare after giving birth. It sounds like your experience was the opposite.
Hang in there, I hope the new meds are successful for you.
Oh how I wish I could have been more present for you when you were in Charlotte! I remember this season. I think about 2013 as the year of spiral, ultimately it was the year where I knew I had to leave and thankfully I did! I love how our 2014's worked out!!!!
My Grandmother had RA and she would not hold my cousins when they were babies because she didn't trust herself not to drop them. I continue to be appalled by some doctors. Truly you have to keep searching for doctors if you're not comfortable with someone. I think we grew up thinking that you just had to listen to whatever they said and actually we need to research and find someone who we connect with. I wish I had known this earlier in my life. I did figure it out with therapist early on. So much life has happened in 10 years. Hopefully the research that they are doing will provide new options for you moving forward! I know having to take so much medicine is never ideal!
Lisa, what a journey you have had. My brother was just diagnosed with RA within the last year. I have an undifferentiated connective tissue disorder with characteristics of multiple conditions. Treatment is a crapshoot, so I can completely understand your need to have a regimen that works and that does not place too much of a burden on you (9 pills, ooof).
I hope you also take all of THIS into account when you think about all you are going through with work, a working spouse, young kids, and all of the tumult that goes along with living a LIFE. You are also managing a very complex and painful chronic condition. Please be easy on yourself.
Oh, Lisa, what a journey. I'm so sorry for everything you have to deal with, whether it's idiot doctors (why are there so many of them?)or all the pain. You are doing an amazing job at managing your RA and still being able to live your life to the fullest!
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