I Don’t Want To!

RA Guy Adventures of RA Guy 13 Comments

Over the past week and a half (don’t forget, I’ve only been home two weeks since spending three months in the U.S.), I’ve received more than my fair share of unsettling news. (Or, as I like to put it, I became a triple crown winner in the trifecta of chronic illness!)

First, I received new that the first appeal for my disability benefits was denied. As of today, it’s officially been 1,076 days since I started this process.

Then, a few days later I found out that the lump in my stomach was a hernia, which needs to be surgically repaired. I don’t have health insurance, which means that I’m going to have to pay everything out of pocket. (And just when I’ve saved up enough money for an arthroscopic knee cleaning, this comes along…)

And Friday afternoon when I picked up seven pages of lab results, I immediately noticed that my liver enzymes were elevated, a result of the methotrexate pills that I have been taking for a little under half a year. (I’ve previously had similar hepatotoxicity while taking Arava.)

As I received each piece of subsequent news over the past 10 days, my reaction was one of “you’ve got to be kidding me”…but as with some many other aspects of living with a serious chronic illness, I knew that none of this was a joke.

In the past, each one of these items alone would have been sufficient to drive me into a downward spiral of depression,  which would take weeks to recover from; all three of them together would have made me feel like my life was in complete shambles, and would have taken me months(if not years!) to bounce back from.

So as I sat there Friday evening thinking about all of these new challenges on my horizon, with tears rolling down my cheeks, I thought to myself that if there were ever a time to feel sorry for myself, that this would be it. If ever there were a time to just stop trying to move forward and throw up my arms in despair, a time to sulk in bed and not look forward to the following day, that such a time would be now.

Something happened that night, though, which pleasantly surprised me. Just as I was giving myself permission to feel sad, angry, and depressed, I found myself saying:

I don’t want to!

I don’t want to get stuck in sadness, and stop moving forward. I don’t want to avoid the problems in front of me, and allow them to grow even bigger. I don’t want to spend a minute feeling down, when I can instead continue to laugh, and to be happy.

So I immediately reached out for help, and asked friends and family for words of encouragement. I started researching what I needed to do, in order to work through each one of the issues on my plate. I gave myself the weekend to rest, knowing that the upcoming week would be more hectic than usual…and I told myself that working through so many simultaneous challenges would only make me stronger, and would only make me better prepared to deal with any future challenges which life, or my chronic illness, might decide to present down the road.

Tomorrow, I’m going to my local embassy to file the necessary paperwork to continue with the appeals process for my disability benefits.

Wednesday, I’m tapering down my weekly dose of methotrexate, as my rheumatologist and I discussed this afternoon.

And on Thursday, I’m going to to the hospital for my hernia repair surgery. The doctor want to keep me a little longer than usual–until Sunday–in order to ensure that there are no complications in my recovery, taking into account that I live with rheumatoid arthritis and walk with crutches on a good day.

Life may sometimes thrown bigger challenges in our path that we might think we’re prepared for–sometimes even multiple challenges at the same time–but the secret to working through them remains unchanged: one minute at a time, one hour at a time, and one day at a time.

And if our progress slows down a little, that’s okay. What matter most, is that we keep moving forward!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 13

  1. GinaRClark

    I’m sorry you’re hurting & going through a stressful time. Your ability to keep writing + posting gives others such encouragement. I wish you the best possible outcome in all areas.

  2. Alice Adams

    So sorry that you are going thru these struggles all at the same time. One thing is bad enough. I need to have a knee replacement and I do not have insurance either. I know how you feel. My knee is twice as big as my other one. I still went to arthritis water exercise today but it still hurts. As I am typing this I am icing my knee while my chihuahua,CoCo is laying on the pillow right beside me. She brings me alot of comfort. I hope things go well with your surgery and progress will be made on your disability claims! I have just cut my methatraxcate (spelled wrong) down this week. Hope you cutting yours down with help with your readings on your blood work. You know, some days are just harder than others and it’s hard to be positive but as you said one day at a time or one minute at a time. Whatever works for you. You take care as you face all these issues this week. God Bless! Alice

  3. Andrew

    I’m so sorry for your trifecta of news. But your response this time demonstrates a great peace and calmness that obviously has been tempered by living with a chronic illness. Way to hang in there and persevere. Praying that the hernia surgery goes well and you have a quick recovery so you can tackle the next battle. I can’t believe the stories about how long disability takes!

  4. Carla

    Oh, dear. Sometimes the only way through something is through it. You certainly are a great example of handling an amount of stress that would crumble most people. Sending you virtual hugs.

  5. Kris T

    Hoping the best for you. I am so inspired by you. I appreciate so much that you continue to write, with all your challenges. Thank you and warmest wishes that it all turns out well.

  6. Terri

    I am sorry things seem to be going from bad to even worse for you! In December I am heading in for my 6th foot surgery is 7 years and was just denied my 3rd disability application, so I do have a slight inkling on what you are feeling. Hope this makes you smile though: I was using my new “Hurry-cane” (great product btw), a woman approached and asked why I needed the cane. I replied I have RA and…; she smiled and said “OH, I used to have RA, but my doctor told me to do yoga, and now it’s gone”, I said, “really? in remission from yoga?” She said, “Nope, I’m cured. RA is totally gone!” Gotta love people! (or find out where that yoga class is!) Wishing you a speedy recovery. Oh, and get a lawyer for the disability claim.

  7. Kate@CookingwithArthur

    It’s inspiring to hear you talk about choosing to not let the rubbish stuff win – it’s sometimes good to think that even if we can’t control the disease at least we can try to control where it takes us mentally. I really hope the op goes well and keep on being super-resilient. You’re clearly made of even sterner stuff than your tungsten wrist guards!

  8. Russell

    Sorry you are more poorly then “normal”. I’ve misplaced the handbook to help guide us through this terrible disease. I rely on you and other #rheum mates to keep me going so, chin up lad. Tomorrow is a new day, greet it with open arms!

  9. Rena Jones

    Stay positive.. Have a speedy recovery from your surgery. Please keep all of us posted.. You can do this. Stay strong. Upward and onward. Sending you healing vibes.

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