It's kind of surreal to say this, but tomorrow will mark one year since I found out that I have RA. In some ways it feels like I got my diagnosis ages ago; in other ways, it still feels fresh and new. I don't think I'll ever forget the days and weeks leading up to my diagnosis, or the experience of learning that I had a chronic illness. I'll never forget the fear and anxiety I felt in those initial months or how much I doubted that I'd ever feel like my normal self and live an active life again.
I've come incredibly far in the past year and am happy to say that most weeks, the only time I think about the fact that I have RA is when I take my weekly injection and oral medication on Monday nights. Besides that, I feel fortunate that I can say that I really do feel like my normal, pre-RA self.
But there are times when I am reminded that I have RA. Things like having to explain why I am not running a marathon this year (or possibly ever) or having to explain why I don't drink at work happy hours or most social events (I'm limited to 2 drinks/month so really have to ration my alcohol intake) and not being able to wear heels (they hurt my joints too much) remind me that I have RA. Seeing my hazardous material receptacle in my closet and the syringes in my fridge remind me that I have RA. I do wonder when/if the next flare-up is going to occur and I worry that I won't find a Rheumatologist in the area that I will like as much as the one I saw in Charlotte.
But all in all, having RA has not been the life-crippling experience that I thought it was going to be when I was first diagnosed. I know I am fortunate that it was caught early before permanent damage was done and for that I am very grateful. I owe a big thanks to my mom and sister-in-law for mentioning RA as a possible explanation for the pain and swelling I was struggling with last August. If they hadn't pushed me to go back to the doctor and ask to have further tests ran, who knows when I would have gotten my diagnosis.
A year ago, if you had told me I'd be running, doing burpees, lifting weights, and getting out of bed with no pain, I wouldn't have believed you. I will never take for granted the ability to be active ever again.
So my message to you is this: if you can walk, run, jump, swim, and bike with no pain, be grateful. If you have unexplainable pain or feel something just isn't right, listen to your intuition and see a doctor. Advocate for yourself until you have an answer.
*Ahem, now excuse me while I step down from my soap box*
Advocate for yourself until you have an answer.
ReplyDeleteAMEN.
So proud of how far you've come this past year!
Yep. It took three doctors (and one who called me a hypochondriac) to simply have the MRI run that diagnosed my labral tear.
ReplyDeleteSo glad your RA is well-controlled and not controlling YOU.
I definitely agree you have to really advocate for yourself when it comes to your health. I was just talking to my mom about this this morning because I got my "gf one year later" blood test results back from the doc and my liver function tests are normal in addition to no longer being anemic. My new doc recommends I stay gf and suspects I'm celiac, where as my old doc told me 6 months ago the gf diet wasn't working and I'm not celiac. I feel so much better than I have in years and I sometimes think how my college experience would have been different had I known sooner.
ReplyDeleteAnyways, I'm glad life has basically returned to normal for you!
You have come SO FAR in a year! It is really crazy to think about! I am so amazed that you are now running long distances and back to your beloved hobby, I know that is such a relief.
ReplyDeleteI agree that it is so important to get a second opinion. It is so easy to assume that a DOCTOR must be right, because they are held to such a high standard and are assumed to be so intelligent, but these days there is so much negligence, plus, everyone makes mistakes. We really do have to be much more skeptical these days and do our homework.
I'll never forget the day you found out - I cried so hard and was so scared for you. It makes me more happy than you'll ever know to see how incredibly active you are now! Thank God you advocated early as you did!
ReplyDeleteAnd you are right - being active is a gift. I'm so glad you get to enjoy your sport again! Love you! Are you doing anything special to say "In your face, RA!" tomorrow?
I can so remember when you said it was hard to push doors open or open jars and now you are DOING BURPEES. 300 burpees in one workout no less! So happy that you are mostly feeling back to your normal active self and I'm SO glad you advocated for yourself and caught it early. Being advocates for our own health is so so important.
ReplyDeleteHere, here on the advocate for yourself until you have an answer! That's so important in this day and age (and saying that made me sound like I'm 90....)
ReplyDeleteThank you for sharing your journey with us <3
You have handled the condition with grace, no doubt. Emotionally so many people let the diagnosis get the best of them, and I'm so glad you came out the other side of that tunnel with a smile!
ReplyDeleteWhat a difference a year makes. Glad you're able to took back and see how far you've come. Hoping you have only sunny skies ahead!
ReplyDeleteIt is amazing how far you've come in a year! So awesome that you can still do things you love despite RA. Can't wait to see you soon!
ReplyDeleteHappy RA-nniversary!! Did you do something to celebrate? I always "celebrate" my diaversary (diabetes anniversary) because I like to celebrate a life well lived (NOT the disease, obviously). I'm glad to hear that you are doing well, although I know how nerve-wracking finding a doc is. I LOVED my NYC doctor and I saw a new endocrinologist in St. Paul in June and didn't really click with him. I have another appointment with a new endo in September (we're supposed to see an endo every 3-4 months) and I'm hoping it goes well. But yeah, doctor shopping is the actual worst.
ReplyDeleteI am so amazed at how far you have come and happy for you. I didn't know that your mom and SIL were the ones who told you that might be a possibility- it did totally seem at the time like something was up, but I certainly had no idea what. I'm so glad they knew.
ReplyDeleteHappy RA-nniversary! I am so amazed by how far you have come over the past year! Being diagnosed with a chronic illness has to be such a scary experience (and having to deal with all of this alone in Charlotte, no less!) so I am happy that you are feeling better. Here's to another healthy year!
ReplyDeleteThis is an awesome post!!!! I have to tell you that because of you I have been able to get answers for myself. I know I've shared a lot of my medical probs with you over the past year and I love how your encouragement always made me feel like my calls/visits to the doctors were absolutely necessary (and not me overreacting.)
ReplyDeleteI love your last line about being grateful if you can do these things without pain. So many of us do take "no pain" for granted! I know I did before I started having constant pain with my knee.
You are an inspiration, Lisa, and I'm so glad you are doing well one year out from your diagnosis!
Happy RA-nniversary!!!!
ReplyDeleteI am a tad bit behind as I was at the lake since Thursday night and haven't checked in until this morning, but I, too, am so thankful you have gotten where you are now with the RA as I do remember how you looked and felt last summer! Oh Happy Day to rock that RA!
ReplyDeleteGoodness, I hope you find a rheumatologist that you like ... but, I was wondering if you don't find what you're looking for in Minneapolis, would you consider finding someone at the Mayo Clinic in Rochester? It's not next door, but it is in your back yard (or something like that). Anyway, you've come such a long way, indeed. It's been amazing to watch you through this journey. And, while there are always going to be health setbacks (RA or no RA), I'm quite certain you'll deal with them as they come and keep moving forward. As long as I've known you, that's what you've always done.
ReplyDeleteWow -- that seems to have gone by fast! Probably not so much for you! I know what you mean about the medicine in the fridge -- I have periods of that and it's a weird reminder. But nothing could make me happier than to hear that things are going well and that you are able to work with the RA. Good for you on advocating... one has to! Reading this truly makes me smile.
ReplyDeleteI'm glad you are doing so well with RA!
ReplyDeleteWow, it's been a year?! I have to admit, you have had the most eventful year of anyone I know. I'm so happy you were able to fight through it and you've just come so far! My mom has a lot of these pains as well (she has a severe form of R.A) so I've always tried to remind myself not to take my movement and lack of pain for granted. My mom struggles a lot, but she's so strong and does all the things she loves anyways. I know you'll always find ways to do the same thing. You're a trooper!
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