Wednesday, September 15, 2010

Invisible Illness Week

This is National "Invisible Illnesses" Week -- a way to educate/advocate for all of us who do deal with an illness, just not an obvious or visible one. I actually have two, since I also deal with migraines; however, mine are so minimal by comparison that I would rather let those who deal with them on a daily basis speak on that topic. But this is the 24-7-365 one for me.......

  1. The illness I live with is: Primary Lymphedema (I shall abbreviate as PLE). It is a condition in which the lymphatic system does not circulate properly and swelling can occur at the site of damage. Primary is congenital and most likely hereditary. It can manifest itself in early childhood, after puberty, or after age 35. Secondary lymphedema is caused by some trauma or removal of lymph nodes (example: cancer surgery). In so many women, they develope SLE in the arms or sides because of mastectomy. In my own particular case, it was probably present all along, is definitely hereditary (have a cousin with the same condition, just recently diagnosed as well in her late 60s!), and began to manifest itself sometime between ages 14 and 19. I can't pinpoint an exact time.
  2. I was diagnosed with it in the year: 2008.
  3. But I had symptoms since: Who knows? First manifest around 1985-ish?
  4. The biggest adjustment I’ve had to make is: needing support garments almost 24/7 (not in the shower or pool).
  5. Most people assume: that it's more of a cosmetic condition than a medical one.
  6. The hardest part about mornings is: needing the extra time to unravel bandages, re-roll, remove additional compression aids, AND put on the compression wear after showering. I've managed to get the compression hose on in about 5 minutes, but when I get a new pair, it's a few extra minutes for that.....
  7. My favorite medical TV show is: does "Forensic Files" count?
  8. A gadget I couldn’t live without is: well, nothing that directly affects my condition, but my MP3 player.
  9. The hardest part about nights are: summer nights, when I'm wearing tubiform stockings, compression aids, AND 2-3 sets of bandages per leg. SWELTER!!!
  10. Each day I take __ pills & vitamins. Okay, about 10 vitamin/supplements, and 1-2 pills each day (not related to lymphedema; no pills for that!)
  11. Regarding alternative treatments I: am already utilizing them.... well, I don't consider MLD (manual lymphatic drainage) an alternative treatment, but some physicians do, I'm sure.....
  12. If I had to choose between an invisible illness or visible I would choose: I don't know which I would choose. There are times "invisible" is better, but you get so weary of explaining, "yes, I have an illness; no, it's not some quacked-up quasi-illness.... do you want to see information on it, because I can give you more than you'd ever want.
  13. Regarding working and career: I still get to work, but I have PT every two weeks, and so I work it as my lunch hour .... and if there's a difference, I make it up by staying late or coming in early.....
  14. People would be surprised to know: lymphedema isn't just a "cosmetic" condition but if untreated, it can lead to serious issues.
  15. The hardest thing to accept about my new reality has been: this is 24/7/365 for the rest of my life. In my case, it's congenital and so I have to manage it, the same way that anyone with a chronic condition has to manage theirs.
  16. Something I never thought I could do with my illness that I did was: nothing. I didn't realize I had this condition until I was 38 and so I just always DID with it anyway.
  17. The commercials about my illness: What commercials? Totally not on the commercial radar .... and thank God because there's not a drug out there to be advertised for it.... so none of the "what a wonder drug, here are the 40 million ways it could kill you" ads.
  18. Something I really miss doing since I was diagnosed is: Going support-hoseless.... I do in the shower, and a couple of times when I have had a migraine develop, I've gone to bed unwrapped or unhosed. And I won't be able to do hot tubs, saunas, steamrooms, etc. again. But otherwise......
  19. It was really hard to have to give up: my razor. Yep, I'm not allowed to use a single-blade, double-blade, quatro-blade, or any blade. Electric razors, those are fine. But if I nick the skin and infection sets in, the protein-rich lymphatic fluid is nothing but a breeding haven for bacteria..... :( Le sigh. So I don't get quite that silky smoooooooooooooth closeness. Hmm, wonder if lasering my legs would be okay! And Nair/Neet STINK (literally).
  20. A new hobby I have taken up since my diagnosis is: hmm.... cooking? Nothing really. It's a condition but not necessarily life-limiting. It's as limiting as I allow it to be. If I don't take care of myself and do the right thing, then yeah, it's limiting.....
  21. If I could have one day of feeling normal again I would: go hoseless!! :D
  22. My illness has taught me: more about the way the human body works. I had so little knowledge (still do, I think) about the body's many, varied, interesting detox/elimination processes.
  23. Want to know a secret? One thing people say that gets under my skin is: well, about the condition: nothing. Not that I'm not ready to advocate, but most people don't ask much more than "so what do you have to go to PT for?" You do a short explanation, and it's like, "Oh. Wow. Didn't know there was such a thing...." and that's as far as it gets.
  24. BUT I love it when people: ASK QUESTIONS!
  25. My favorite motto, scripture, quote that gets me through tough times is: my thought is that I have this condition, it does not have me.
  26. When someone is diagnosed I’d like to tell them: do not hesitate to learn about the condition, and DO NOT miss an MLD treatment, and FOLLOW THEIR INSTRUCTIONS. Yes, it's a colossal pain in the @$$ to bandage every night or use a pump (if you have fibrotic skin), but it beats bout after bout of cellulitis all to hell. I had ONE bout, extremely mild, no open wound -- and it STILL took 3 weeks of antibiotics to get it under control.
  27. Something that has surprised me about living with an illness is: well, for me, it was the fact that after 20-ish years of untreated and undiagnosed PLE, my skin had not become fibrotic, or otherwise horridly disfigured. I consider myself TREMENDOUSLY lucky in that respect. Even my physical therapist was VERY surprised. In some ways, it was almost like it had just recently started happening, instead of having 20 years or so of this condition.......
  28. The nicest thing someone did for me when I wasn’t feeling well was: Just listening to me.
  29. I’m involved with Invisible Illness Week because: I believe in advocating and educating. The more you know......
  30. The fact that you read this list makes me feel: happy -- and that I have made a little difference in helping people learn and understand

Do you have an "invisible illness"???? Click to learn about Invisible Illness Week, and consider participating in "the note" project!

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