Monday, January 18, 2016

Living with RA: My First Flare

Those of you who have been reading my blog for quite awhile know that I was diagnosed with Rheumatoid Arthritis in August of 2013. If you are unfamiliar with it and are curious about it, you can read more about it here. Here's an extremely abbreviate version of what it is:

"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."

When I got diagnosed with it in 2013, I started a pretty aggressive treatment plan that put my disease into remission and for the most part, I've been asymptomatic for the last 2 years. Most days I forget that I even have RA. Well, besides when I take my bevy of drugs each week.



Well last Thursday, I was reminded that I do, in fact, have a shitty chronic illness, when I experienced my first RA flare since my diagnosis. When I went to bed on Wednesday night I had some pain in my middle finger but was thinking/hoping it would go away overnight.  Boy was I wrong.  I woke up on Thursday to a very swollen hand.



Due to the swelling in the joints of my right hand, I could not fully extend my fingers or made a fist and the pain was so bad that I ended up crying quite a bit that morning. I could not do the simplest tasks, like grasping the handle of the fridge to open it, holding a spoon, fork or glass to eat and drink, or open my make-up compact. My left hand was fine but doing everything one-handed is challenging - especially eating and applying make-up as I am FAR from being ambidextrous.

My Rheumatologist was not in the clinic that day but luckily I was able to get an appointment with his partner and he did an ultrasound which confirmed that it was definitely an RA flare as he could see the fluid around my joints, indicating that they were under attack by my immune system. He also determined that my cold had turned into a sinus infection so in addition to putting me on a steroid to reduce the swelling, he prescribed a strong antibiotic to take care of the sinus infection.

I know there are a lot 'at least' statements that can be made, like "at least this was your first flare in 2 years!" or "at least this didn't happen when you were in Mexico" or "at least the steroids will help" and I certainly said some of these statements in an effort to make it seem like I was handling it ok. But the reality of the situation is that it royally sucked and I once again felt betrayed by my body. I was reminded that you can do ALL the right things (eat healthy, exercise, etc) but sometimes it does not matter. So I let myself mope and cry and feel all the "why me?" feelings. Because in my opinion, you have to let yourself feel all those things so you can release those emotions and move on from the experience.

The steroids have kicked in and the swelling has subsided but what I am left with is a feeling of fear.  Fear that this was not a fluke and that I will have more flare-ups in the future. Fear that this might happen again when I am traveling for work or while on vacation or at some other time when I don't have access to my physician.  I know that I have to make the choice to not give into those feelings of fear and to trust that my physician will figure something out if more flares continues, but it's hard to choose to walk away from that feeling of fear.

I realize that this is a Debbie Down post and not at all uplifting but I believe in "keeping it real" and showing what real life looks like (when it's your story to share, as it is in this case). Because life is not all sunshine and roses.  I know that I am very blessed to have a supportive boyfriend, kind and caring family members, and compassionate friends. But you can be thankful for all of those big things and still be sad over the circumstances of your life. And right now I'm feeling a little sad.

So right now I'm trying to focus on self-care. I'm giving my body lots of rest and am taking more rest days than I've taken since the marathon. And I'm trying to squelch those feelings of guilt over my lack of activity as I know that rest and extra sleep are what my bodies needs right now. And luckily this flare coincided with a mostly plan-free weekend and today's "shouldless" day. I know that with time this bout of sadness about my RA diagnosis will dissipate as I continue to get better but right now I just have to be OK with not always being OK With my diagnosis.

21 comments:

Charbelle said...

You're absolutely right, you have to allow yourself to feel all the emotions. When I first got into Al-Anon in November 2011 initially I thought I needed to just gloss everything over and not give into self pity. I learned through that process that you do in fact have to allow yourself to feel all the feelings, and then let go of them. If you don't give yourself that time you end up having to deal with all of them later on anyways.

It is scary. It is a lot of unknown. It is a lot of unanswered questions. I'm so thankful that you have this day to take care of you! Big big hugs!!!

megabrooke said...

Ugh, that's really tough! These autoimmune diseases are so tricky because exactly like you said- you can be doing all the right things- eating healthy, treating your body well, getting plenty of rest, and these flare ups can still happen from time to time. It has to be incredibly frustrating for sure, and I don't blame you for feeling pretty irked about it. You have a great attitude though- and you know me, it's all about the balance-- you let yourself feel bad and that's good and okay, but you're not letting it get in the way of continuing what you know you need to do, taking good care of you. My husband Matt has MS, and he's very healthy just like you, active and takes good care of himself. For him, flare ups do end up happening when he's run done, but none the less, they're never expected and never fun. Keep on nurturing yourself in whatever way makes you feel best- whether it be a good cry, a few glasses of wine, sleeping in on the weekend, or a long run. We're always here to listen. Hugs!

Emilie said...

I am glad you scheduled your "should-less" day for today as it'll be perfect for self-care and allowing yourself to do whatever you feel like doing to take care of yourself. You're absolutely right that it's perfectly fine and healthy to recognize when times are tough and grieve for them. My pastor actually posted an interesting article on Facebook over the weekend about the phrase "everything happens for a reason" and how we handle grief. In short, it basically said that sometimes our grief needs to be carried, but many people are quick to reason that bad things happen for a reason. I found it really interesting especially because I generally subscribe to the idea that God doesn't give us anything we can't handle/everything happens for a reason. My first thought when I saw your IG post was "wow, at least she got through 2 years without a flare" but I didn't say that to you because I know that no matter how frequent or infrequent your flares are, it still royally sucks when they happen. The reality of a chronic illness is hard. The unknown is even harder. To compare on a very, very small scale, knowing I still have 2 kidney stones hanging out has been causing me a lot of anxiety because I have no idea when they will decide to move along and wreck my life for another week. Keep up with your realistic attitude - I think it will actually help you cope better than having a over the top positive outlook that might leave you disappointed. You're in my prayers, friend!

Jeanie said...

Guess what -- you are not Debbie Down. You are Rita Real and it's really awful that this is rearing its head again. As you know from our mailing and more, RA may not be my thing but I've had my share of recurring chronic issues and I know how frightening, almost paralyzing, it is when you realize that this thing you thought had gone down under to stay reminds you it has a mind of its own.

Of course there are "at leasts" but right now isn't the time for them. Right now you are doing exactly the right thing, acknowledging, assessing, taking care. One thing that may or may not be an option, but is it possible to talk to the doc and ask if before you leave for any extended travel if you could get a prescription you could take with you -- and not take unless it was equally terrible as you experienced? I'm not sure if they would do it, especially since you haven't known your doc a really long while. But it might bring peace of mind, and if you don't have to use them (hopefully), at least you are prepared. At least check it out. The worst they can do is say no.

Nora said...

I appreciate realness; life isn't all unicorns and rainbows, and I personally don't think this is a Debbie Downer post. It's life. It happens.

I hate that you had a flare-up last week and can't fathom or imagine the pain, the emotions, the frustration. Kudos to you for being kind to yourself, for acknowledging the feelings and working through them, and for sharing your story with us.

Always in your corner, always proud of you, and always here for you!

Leigh said...

I'm sorry to hear that your RA has flared up. I hope you are able to find a solution that helps soon and keeps more flares away. You are definitely not a Debbie Downer- you are keeping it real as you deal with everything RA comes with

Stephany said...

I think everything you are feeling is 100% natural, especially since you have been symptom-free for so long and this flare has to spark a lot of anxiety and fear. Totally understandable. Even if you haven't had a flare in 2 years, the unknown of not knowing WHY this flare happened and when the next one will show up is not a fun reality to live with.

I'm glad you're having a "should-less" day today and hope it is relaxing and restful!

The Many Thoughts of a Reader said...

It sucks. There is no at least about it. You should be pissed off. Obviously we all don't want to see you mope for life cuz that would be painful to watch but it's definitely okay because you are right. You do all the right things and this is so not fair.

Gracie said...

I am so super sorry. Hope it goes down soon. Chronic illnesses are completely unfair and I hope you let yourself get ragey and vent every so often!

Jenny said...

That absolutely totally sucks :( I'm glad that the medication is helping and that you have a good doctor but it still sucks that this happened and it's brought a whole bunch of negative feelings and emotions with it.

Abby said...

Yes there are a lot of "at leasts" that you could say....but it doesn't make it suck any less. RA is a tough disease - because you don't get a warning of it coming on. You're not doing anything wrong to bring it on. It just happens :(

I am so sorry, Lisa. I work with Rheumatologists are who doing tons of research to treat and prevent RA better - so I pray they can come up with better and safer treatments to keep flare ups non-existent!

Love you and my heart goes out to you during this time.

Erin said...

It doesn't matter if you can say "At least...." and put a million things after it. This is still something shitty that affected you! I understand what you mean though when you say that. Your hand looks so painful in the pic. I'm glad things have improved but I don't envy you!

You were diagnosed with the RA shortly before I was diagnosed with PCOS. I really appreciated all the comfort you gave me when I was coming to terms with my diagnosis. That is one of the things I love most about you. You always find a way to make people feel better when they have something worrisome on their mind.

I know that there is nothing I can do other than tell you I love you and I am so glad you have support when you deal with less than stellar days!

I hope there aren't any more flare ups for awhile!

katielookingforward said...

Thinking of you!!! Its so hard when things can change overnight and you're not in control, glad you were able to get in to the doc right away!

A said...

Ughhhh...I am so sorry. No need for constant cheer or at leasts. That sucks! I hope your body is back to normal soon. Rest & take good care.

Raquelita said...

I'm really sorry to read about the flare up, and I hope that the steroids do the trick (and that your sinuses feel better too)! It is really shitty and hard to live with a chronic disease. You definitely should give yourself the space and time to feel what you are feeling and the freedom to express those emotions honestly.

I hope this is the last flare up for a very very long time! Much love to you!

Marlys said...

Don't feel bad that you are angry right now about this flare-up! It is a scary disease and I wouldn't with it on anyone! I am so thankful the steroids help, and I think it is a great idea to see if you can get a prescription to have with you when you travel! That would give you peace of mind in case you have another flare up! I pray this is a rare occurrence for you!
You know your Dad & I had broken hearts when we heard from you, and have been praying for your complete recovery, even emotionally! I know you will be happy soon, but never the less, it was a tough ordeal!
We love you!

Amber said...

It's crazy how much your hand swelled over night! Yes having RA is a really really sucky, crappy no good thing. While obviously not going through the same thing as you I know you know I am relating these days to the feelings you have when your body "betrays" you. It's very unsettling and upsetting. Especially when you are someone who is used to having control over your life and you can control what you eat and the type of activity you do but as we've both learned the hard way there are some things about your body you just can't control. As sucky as it is, sitting with the emotions of anger and sadness and fear are good for us. And writing them out probably felt therapeutic too! I have been itching to do that lately myself. Thinking of you and sending hugs. xoxo

A said...

Oh, Lisa! I am so sorry! How scary and frustrating. Keep your chin up. I'll be sending you lots of good, fast healing vibes.

Kyria @ Travel Spot said...

Ug! It must be frustrating for you to have to deal with that. I know that it's easy for me and other people to say "at least" but screw that. We can't always be sunshine and roses!! Sometimes we just need to feel a bit sorry for ourselves and then move on when we are ready. I do hope that it does not last long and that the other flare ups, when they come along, are short lived.

Jolene - EverydayFoodie said...

Oh my gosh! I'm sorry to hear you had a flare-up like that. That's terrible. You really realize how much we rely on our hands once you can't use them. I don't blame you for feeling upset - that's a tough thing to deal with.

Linda said...

I'm so sorry. Hugs. Hugs.