Wednesday, September 15, 2010

National Invisible Chronic Illness Awareness Week

30 Things about me

I put a note in the airport bathroom in Dallas - can't figure out how to get the picture off my phone onto the web...  and I work with technology every day.
Chronic illness? Check out
"They that had fought so well
Came thro' the jaws of Death
Back from the mouth of Hell,
All that was left of them"  Tennyson
 For invisible chronic illness Awareness Week I am repeating the meme that is out there in blogger land, 30 Things about Me:
1. The illnesses I live with are: hemicrania continua, diabetes, chronic pancreatitis, mast cell activation disorder/mastocytosis, autoimmune hives and thyroiditis, radiation induced lumosacral plexopathy
2. I was diagnosed with it in the year: Hemicrania continua 2008, diabetes 2003, chronic pancreatitis 2009, mast cell issues 2007, autoimmune issues 2009, plexopathy 2009
3. But I had symptoms since: I turned 45 - things went down hill fast.
4. The biggest adjustment I’ve had to make is: not being able to do what I want when I want and living with virtually no sleep oh, and no french fries. :(
5. Most people assume: that a headache is something we all experience and they know what one feels like.  Thank heaven they don't have to experience hemicrania continua - wouldn't wish it on anyone.
6. The hardest part about mornings are: I probably didn't sleep but an hour or two.
7. My favorite medical TV show is:  Marcus Welby MD - where have all the Welby's gone??  They are no more.
8. A gadget I couldn’t live without is:  my cane - the one with BLING.
9. The hardest part about nights are:  headache pain almost every night a 2-3 AM. sigh.
10. Each day I take 17 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have not had success, found it an enormous waste of money but so were most of the real treatments.
12. If I had to choose between an invisible illness or visible I would choose: invisible
13. Regarding working and career: Have had to make compromises, but have the  most wonderful bosses in the world.  Wish everyone had the same experience with their employers.
14. People would be surprised to know: I have scripts for very high powered pain killers but choose to be in pain and not to take them in order to work.  Someday I won't have this choice so I'm making while I can.
15. The hardest thing to accept about my new reality has been:  money worries
16. Something I never thought I could do with my illness that I did was: get some control of the headache with an occipital stimulator.  WooHoo!
17. The commercials about my illness: don't exist - except for diabetes.
18. Something I really miss doing since I was diagnosed is: being able to do a long day's work without consequences
19. It was really hard to have to give up: my work towards my Masters Degree.
20. A new hobby I have taken up since my diagnosis is: making new bracelets for my Medic Alert symbol. :)
21. If I could have one day of feeling normal again I would: go visit my nieces and nephews.
22. My illness has taught me: the value of compassion.
23. Want to know a secret? One thing people say that gets under my skin is: how are you doing?  Don't ask don't tell is my policy.
24. But I love it when people: just want to talk about normal everyday things and have a laugh.
25. My favorite motto, scripture, quote that gets me through tough times is: when the going gets tough, the tough get going!
26. When someone is diagnosed I’d like to tell them: what medications worked and didn't work for me for hemicrania continua - there are so few of us we need to compare notes.
27. Something that has surprised me about living with an illness is: my awareness of others and their illnesses has increased, and the saddest part is that there is always someone who is worse off than I am.
28. The nicest thing someone did for me when I wasn’t feeling well was: make me bunches of ice packs to bury my head in!
29. I’m involved with Invisible Illness Week because: we are surrounded by fellow sufferers.
30. The fact that you read this list makes me feel: hopeful and glad I participated.


  1. Love this post!!!

    God Bless~
    Debbie Jean

  2. Wow Winny, so these ailments came upon you not too long ago. Marcus Welby I used to watch that show along with Medical Center. Blessings to you dear one. Thank you for sharing a bit about you and I am glad that the list made you hopeful in participating.

  3. Debbie Jean: Every day is a happy day when your cane has *BLING*!

    JBR: Had cancer at 45, all systems down quickly thereafter. Always wonder if my immune system was working so hard to kill the cancer that everything else snuck in under the radar!!! :) I don't remember Medical Center - but I grew up out in the countryside on a farm and we didn't get a whole lot of TV channels there.

  4. I love your attitude and your motto. And your willingness to bring awareness to these invisible illnesses (most of which I can't even begin to pronounce).

    I want to see a picture of your cane all blinged out!

  5. Heather: Isn't it odd how odd diseases seem to "group" together? I'm a vortex of odd.

    Will see if I can capture the lovely blinginess of my cane!! (If you have to carry something that says you have a physical disability, it may as well say something about you!!)

  6. Thanks for the reminder about this week. It's so important. This is a great post, but I wish you didn't have to post it. I wish all of your symptoms and troubles could be wished away. If they could - I would have wished them away long ago. In the meantime, you rock.

  7. My cane has no bling :( Where did you get one with bling? I wanna see!!!!

    God Bless~
    Debbie Jean

  8. Sue: I think all of us invisible illness people rock!!!

    In full Forest Gump mode: My mama always said "If wishes were fishes then the ocean would be full"

    Debbie Jean: I try and put a picture up this weekend! It's the only one like this I have seen, and I can't find one like it on the internet so don't know where the pharmacy I bought it got it....just a local place.