Sunday, April 8, 2012

(Not So) Awesome Conversation

Today is day 8 of the WEGO Health ~ The Health Activist Writer's Month Challenge 2012. I will be writing a post everyday this month and each will in some way focus on what life is like with fibromyalgia (as well as other health issues including migraines, hypothyroidism, and polycystic ovarian syndrome).

We’re constantly communicating – and it’s easy to have a quick exchange without even realizing all of the intricacies of interacting with someone verbally. A conversation is complex! (And, sometimes it’s short, sweet, and effective.) So for today’s prompt – try writing script-style (or with dialogue) to recap an awesome conversation you had this week.

So today, I'm changing the prompt up a bit. What's above is the assignment. However, it's been a week full of not so awesome conversations. Super frustrating! I thought I'd give you just one example of the insaneness that living with chronic illness can bring.

Background: We currently have no health insurance which makes living with chronic illness really tough. We applied for some help as we wait to see if my disability is going to be approved (we're in the early stages of this). Well, since I'm of an age that I should be able to work, I had to have a form signed by a doctor saying I'm unable to work. Since we have no health insurance, you can see this is a vicious circle. I made an appointment at a clinic that would see me without insurance based on income and this happened in the midst of the visit.

(I had already explained a couple of times why I was there, what I needed, my health history, my lack of insurance, etc. and was feeling like a broken record at this point. I was trying to remain calm, however, because I really needed this doctor to help me.)
Me: So, I have this form that I need filled out.
Dr: Let me look at it. (He spends a few minutes reading over it.) Well, a rheumatologist really should be the one to fill this out.
Me: I understand that I need to see a rheumatologist. However, I don't have insurance and I can't afford to see one right now. In the mean time, I really need this assistance and I cannot get it without this form being filled out.
Dr: Honestly, I don't want to fill this out that you are disabled because you are young and it will devastate you mentally and emotionally.

The conversation went on from there. He did finally fill it out and we got the help we need. What really upset me in all this though was the fact that he seemed to think I was clueless about my health. I mean, does he not think I realize that I am only 34 years old and I am using a cane or wheelchair all the time, that I spend about 50% of my time in bed and most of the rest of my time in a recliner, that my brain is so foggy at times that I can't remember the names of people I care about or memories that I should remember, that I can't go for a walk in the park with Russ or Damaris because the pain is so bad, that I have to rest up for days in order to go out and do something fun, that there is not a single inch of my body that does not hurt, that I cannot do the work that I went to school for years in order to do because the fatigue is so bad and I have no energy to even get up and go to work, that I have more bumps and bruises than I can count from stumbling and falling so often, that there are days when I shake so bad that I can't even hold onto the tv remote to change the channel, that it takes me hours to write a blog post because my hands swell and it hurts to type the keys, that sometimes my arms are so heavy with pain that I can't do my most peaceful activity of knitting because it hurts to move my arms, that I cannot live what most think a normal life should be like. How dare you try to put words into my mouth! How dare you assume something so huge when you haven't lived a single moment in my shoes! Do you think I want to live this way? Because I don't, but this is my life and I am learning to find my new normal. Because regardless of what you think, this disability is not going to ruin my life or devastate me mentally and emotionally. I'm going to have bad days when I feel awful and I cry and I'm angry and I want to scream and hit things and run away from all this, but don't we all have days like that. This is who I am and all this stuff I deal with on a daily basis is part of making me who I am! And that makes this (not so) awesome conversation another piece of the puzzle on this journey where I'm On My Way!


  1. I'm glad I get to journey with you. I love you so much. You are the best part of my days.

  2. I <3 you too! And I'm so happy when you're home with us. I appreciate all the hard work you do to provide for us. You're the best Bubba ever!


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