Friday, September 13, 2013

What you don't know...

...hurts. 

Yes, I'm talking about physical pain. 

I haven't been posting around here lately, and I don't really have a good reason. Things are pretty awesome now that I'm in school and (sorta) loving it. (Don't get me wrong: there's nowhere I'd rather be, but it's kinda intense, day-to-day.) Plus, there's the boy. He's pretty cool, too. 

But back to something else. Because that's not so cool. 

September 9-15 is Invisible Illness Awareness Week. I'd bet a lot of real money that most, if not all, of you didn't know that. I didn't know that until this year, either, but I'm well aware now. Why? Because for at least the last year, I've been dealing with an Invisible Illness that, as of now, is undiagnosed. 

Well, that's actually not true. I do have one diagnosis: Raynaud's phenomenon. Basically, that means the blood vessels in my hands and feet and sometimes my nose overreact when I'm cold, so my extremities start turning funny colors, get cold, stiff, and numb, and then when the feeling comes back and blood returns, it's painful. It's also annoying, both on its own and because it can be a symptom of other diseases. The other diseases are what I have no answers about, though. 

I don't talk about this much because there's not really anything to talk about, and not many people understand. If you want to get a glimpse, though, I did find this: 

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is:  Raynaud's phenomenon (and?)...
2. I was diagnosed with it in the year:  2013.
3. But I had symptoms since:  2012, plus joint pain since at least 1998.
4. The biggest adjustment I’ve had to make is:  Dealing with the emotional aspects of medical mysteries.
5. Most people assume:  Since I run, I must be perfectly healthy.
6. The hardest part about mornings are:  Not knowing what the day will bring.
7. My favorite medical TV show is:  I actually have no idea. I used to love them but don't get those channels now.
8. A gadget I couldn’t live without is:  My foam roller. 
9. The hardest part about nights are:  Falling asleep, either too early or not until much too late.
10. Each day I take _3_ pills & vitamins. Sometimes more. (No comments.) 
11. Regarding alternative treatments I:  Wish I knew what to try.
12. If I had to choose between an invisible illness or visible I would choose:  Anything I could identify.
13. Regarding working and career:  I'm determined to make it to tenure, but using a computer mouse hurts some days. I hope I can write and publish like I want to. 
14. People would be surprised to know:  Working out both helps and hurts, and it's hard to know which days will be which.
15. The hardest thing to accept about my new reality has been:  Acknowledging that I can't have all the answers.
16. Something I never thought I could do with my illness that I did was:  ...I'm not sure yet, but some days I'm surprised I run. Mostly, though, I'm surprised that this Type-A can deal with the unpredictability. 
17. The commercials about my illness:  Are non-existent. 
18. Something I really miss doing since I was diagnosed is:  Holding hands. 
19. It was really hard to have to give up:  The idea that I'm healthier than I've ever been.
20. A new hobby I have taken up since my diagnosis is:  Freelance editing.
21. If I could have one day of feeling normal again I would:  Remain thankful for all I have and have learned.
22. My illness has taught me:  I can't control everything.
23. Want to know a secret? One thing people say that gets under my skin is:  That the symptoms of A are X, Y, and Z. Symptoms vary, folks. 
24. But I love it when people:  Try to understand that there's a struggle inside of here.
25. My favorite motto/scripture/quote that gets me through tough times is:  "You're not crazy. I believe you."
26. When someone is diagnosed, I’d like to tell them:  Find someone who wants to listen and then don't give them up.
27. Something that has surprised me about living with an illness is:  Some days can be just fine and others can bring you to tears...and you may never be able to tell which will be which. 
28. The nicest thing someone did for me when I wasn't feeling well was:  To just let me cry.
29. I’m involved with Invisible Illness Week because:  No one should have to feel alone. 
30. The fact that you read this list makes me feel:  Heard...and therefore just a little better. 

Thanks for listening. It's going to be really hard to click "Publish" on this one, but I appreciate that even a couple people might be willing to read... :-\

1 comment:

  1. Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam

    ReplyDelete

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