I’ve Been Putting On My Own Underwear For 16 Years But Arthritis Still Makes Decisions For Me

24 Jun

Most days I wake up and look at my wall, read the quote that gets me out of bed almost single day and then make one of the hardest decisions of my life: should I put on underwear today? Actually, this is how I start my day (I actually do start my day like that though):

I wake up, look at my wall and remember I am in charge of how I feel and today I am choosing happiness. From there, I lay in bed and once my mind is awake I have to wait until my body is awake. First, I try to move my knees and make sure none of them locked up in my sleep. Then I try to move my fingers and stretch them so they can actually start bending. After stretching my fingers I roll over on to my stomach because my low back is a mixture of numb/tight from staying in the same position all night. After about 15 minutes of letting my body stretch and wake up, I brace myself for the first steps of the morning, my feet ache even though I haven’t been standing on them for however long I was sleeping. Look at myself in the mirror and decide whether i’m feeling like Kate Upton today or if i’m feeling like Wocka Flocka. From there I start my day and let my body decide whether it’s going to have a good day or not.

That’s called waking up on arthritis’ terms. Not my terms, it’s terms. I could totally lie and say I wake up every morning and turn my swag on after brushing my teeth with a bottle of jack, but I don’t (obviously in my head I do, I just haven’t come to terms with reality yet). But in all reality, that’s my day. I usually am pretty okay with who I am physically (actually, bigger boobs would be nice) but some days are better than others. Today is a bad day on the account of making decisions. I’m generally good with making decisions for myself but today I had to start thinking of decisions that will affect me for the rest of my life. I’m 16 years old, my decisons should look something like this:

  • Leopard or Cheetah?
  • Are putting on pants really worth it?
  • Am I going to put on makeup?
  • Is this “push-up” bra actually pushing anything up?
  • Should I start saving for a car or a boob job?
  • Am I going to DVR Pretty Little Liars or The Bachelor?

But instead, my decisions went like this today:

  • Would you rather have your arthritis be “managed” or would you rather having chronic migrains, a compromised immune system and bruises in your leg from getting your shots?
  • If you continue on this treatment once you move out, are you going to give yourself your shots?
  • If you don’t continue on this treatment, are you okay with the fact that your arthritis will not be managed?
  • If you go off of your treatment, would you rather be retired by forty because you can’t work and stopped doing your treatment when you were 16 or would you rather keep going on your treatment and not be able to work because the side effects make your life hell?
  • Would you rather strangle yourself with the underwear you didn’t put on today now or later?

Did you know google is a really scary place? I’ve always googled things when in doubt and I can honestly say i’ve become de-sensitized to most forms of graphic nudity i’m pretty sure (If you’re not sure what “syphillis” is when you’re like 12, don’t. Just don’t. Ever. Especially if there’s pictures included. Just stahp). But while having to make all of these “decisions” I have to do my research and honestly, research is scaring me so much my heart drops to my butt everytime I do. This article really put it in perspective for me though.

Q: With taking injections of methotrexate and Humira, along with naproxen and folic acid, I have had very little joint pain, swelling or morning stiffness for at least three months. Does that mean my RA and psoriatic arthritis are in remission, and can I stop medication, or at least the injections temporarily? 

A: You may well be in remission, but you should not stop medication by injection. The combination of an immunosuppressant (methotrexate) and a biologic agent (Humira) can result in a near-complete cessation of symptoms in a high percentage of people. Your excellent response with very little pain in the joints and no morning stiffness or swelling for the past three months could be classified as a “clinical” remission.

But without the injections, the diseases most likely will come back within four to eight weeks as strongly as before you started taking those medications. Most important, if the disease becomes more active, you will have an increased risk of damage to the joints. I certainly understand your desire to stop medication or use less, but you must balance it with the need to keep the RA and psoriatic arthritis under control, in order to halt the progression of your diseases.

Once a clinical remission is achieved, we attempt to lower the amount of medications while maintaining the remission. I recommend you talk to your rheumatologist about first reducing your dose of naproxen, which is an NSAID. People in clinical remission usually can discontinue their NSAID; because it does not halt the progression of RA or psoriatic arthritis, stopping it does not increase the risk for disease-related damage. Once the NSAID is discontinued, sometimes the methotrexate dose can be lowered next, but this is an individual decision to be made with your rheumatologist. Rarely can a person stop a biologic agent and maintain a clinical remission.

Paul Howard, MD, Rheumatologist”

I’ve been on methotrexate and being that it is a chemotherapy drug, it sucked ass to be put into “angsty teen terms”. No kid wants to lose chunks of their hair and throw up everyday. But being that I can’t stop my biologic agent, what is there to do? When does Bella get to experience “remission” again? While switching between methotrexate and going into a two year “remission” and then going to an IV treatment, I was so happy that I didn’t have to be poked and pricked. Humira is cool, Phil Mickleson takes it, too, so that’s pretty neat. I’m on a “celebrity” drug that isn’t cocaine. COOL. But in all honesty, I should be having to make these decisions and I HATE making these decisions. It honestly scares me knowing that someday I might not be able to pursue any of my career goals because it’s not physically obtainable. Prostitution has popped in to my mind a few times as a back up plan but let’s be real, i’m pretty sure if I can’t make it out of my own bed, I wouldn’t be able to make it out of multiple beds. (This is a disclaimer. If you can’t handle dark humor and my constant prostitution jokes, then I don’t think we can be friends). But really, I want to pursue a career in music education. Have you ever heard of a conductor who can’t conduct because her arms hurt to bad? I want to be an ASL interpreter someday…Have you ever heard of an interpreter who can’t interpret shit because her hands don’t really work? I’m telling you, prostitution is sounding better and better by the minute.

Usually people would take this as a self pity party, but there’s nothing I pity about myself. I have an awesome life and there are people that have it a hell of a lot worse than I do, but sometimes I think I deserve to vent and hate my life for at least as long as it’s taken me to write this. Oh, and speaking of writing…do you know how hard it is to type some days? Never take simple things for granted because they might be hella hard for other people. My outlook on life is simple and i’ll say it again and put it in bold print; I have a really good life and there are people who have it so much worse than I do. It’s all about how you choose to live your life and what attitude you choose to have; are you gonna have a good day or a bad day? From that moment in third grade when they said

“You’re never going to run, jump, walk or run like a normal kid ever again”

I realized I can take two paths. I can take a really negative outlook on life, complain about how my cup is half empty and never be positive OR I can take a really postive outlook on life and laugh all of my awkward medical problems away. How else do you explain to your friends when they get in your van and ask “Oh sweet, whos handicap parking placker is this?” and you have to explain “oh, it’s mine. It works great for black friday”. You have to laugh it off.  That’s what i’ve done my entire life, laugh it off because i’m the Sped.

Today was a big day for me. I am now going off of all treatments and waiting for symptoms to come back. So here’s to waiting and potentially ruining my life. Sweet-o.

I leave you with another one of my life mantras and hope that you can find some sort of wisdom from it, which could be hard because it’s a home-made mantra.

“People are always so concerned about whether their cup is half full of half empty. I’d rather be more concerned about what’s inside of the cup. You could have a cup full of pee. Does it really then matter if it’s a half-full or half-empty cup of pee? No. It’s a cup of pee.”

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4 Responses to “I’ve Been Putting On My Own Underwear For 16 Years But Arthritis Still Makes Decisions For Me”

  1. Michael Garrett June 25, 2013 at 1:24 am #

    Hahaha… nice read… How are you doing now? I was 15 when I was diagnosed with osteoarthritis and it was cured when I was 22 through stem cell therapy (after spending money physical therapy, which didn’t give me any relief and loads of pain relievers). I had 5 weeks therapy with Dr Grossman (an orth surgeon from Stem MD) and it was successful. Now, as much as possible, I try to maintain my weight (the cause of my OA was overweight), I stick to my diet plan and I regularly run. I hope you will be able to find the appropriate treatment for you.

    • bandgeekbella June 25, 2013 at 10:13 am #

      I’m glad stem cell worked in your favor! That’s awesome! I’m doing okay now I would say. My arthritis started out as regular JRA when I was nine and now it’s progressed to spondyloarthropathy and i’m sixteen. Finding a treatment that works has definitely been a struggle, but it’s all trial an error. Best wishes and stay healthy!

  2. Ellie January 16, 2014 at 9:54 am #

    Great blog article.Really thank you! Cool.

Trackbacks/Pingbacks

  1. So I’ll start a revolution from my bed | Halfway Between The Gutter And The Stars - July 20, 2013

    […] I’ve Been Putting On My Own Underwear For 16 Years But Arthritis Still Makes Decisions For Me (bandgeekbella.wordpress.com) […]

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