Showing posts with label 30 things about me. Show all posts
Showing posts with label 30 things about me. Show all posts

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 invisibleillnessweek.com
"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.

Wednesday, September 9, 2009

In Anticipation of Invisible Illness Week


September 14-20 2009

Thanks to the many bloggers who are participating I am now aware of Invisible Chronic Illness Week. For more information on what an Invisible Illness is, and how many people are affected by these afflictions, go to invisibleillnessweek.com

I've decided to fill out the following list, as I have learned a lot reading the lists of others. Hope mine makes sense as The Headache has been really intrusive this evening. I'm thinking it may be the weather...

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: hemicrania continua ( I have many more, but I'm tring to simplify this a bit)
2. I was diagnosed with it in the year: Hemicrania Continua 2008
3. But I had symptoms since: hemicrania continua 2007 (although I had "common" migraines from 1976 - 2004)
4. The biggest adjustment I’ve had to make is: knowing that there is a limit to the pain I can tolerate and trying to adjust my life and medication to control the pain and still feel productive.
5. Most people assume: that I am as healthy as a short chubby pony, maybe a tempermental Shetland Pony that children won't ride because it bites and tries to scrape them off on low hanging limbs...I don't think I qualify for healthy as a horse....
6. The hardest part about mornings are: trying to function with little or no sleep and falling asleep at odd moments when I am trying to get dressed.
7. My favorite medical TV show is: Dr. G Medical Examiner
8. A gadget I couldn’t live without is: a potato peeler - otherwise I carve away all the potato with the skin...
9. The hardest part about nights are: pain at 2AM to 3AM, and not sleeping.
10. Each day I take 8 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried a few, were not any more effective than any other treatment.
12. If I had to choose between an invisible illness or visible I would choose: the invisible illness. Having been friends with persons with visible illnesses I don't know if I would have their bravery to deal with people in general and their misconceptions. With an invisible illness I can be perceived as healthy when walking through crowds or meeting new people. Visible illnesses don't give you that option.
13. Regarding working and career: I am glad I have such wonderful bosses because it has been a struggle to work at all these last two years.
14. People would be surprised to know: at one time I was a fine art major in college and love art history and am a pretty good draftswoman..
15. The hardest thing to accept about my new reality has been: my fear of extreme pain. I'm not normally a fearful person, but there are realms of pain I don't want to go back to ever.
16. Something I never thought I could do with my illness that I did was: get into a national study for occipital stimulators for headache pain. Woo Hoo!
17. The commercials about my illness: don't exist. There aren't too many of us out here yet.
18. Something I really miss doing since I was diagnosed is: swimming - exercising is a huge problem for me as it exacerbates the hemicrania continua pain, even with my occipital stimulator. Sigh...
19. It was really hard to have to give up: my feeling of invulnerability
20. A new hobby I have taken up since my diagnosis is: blogging - it's a great distraction.
21. If I could have one day of feeling normal again I would: take a flight to a Carribean island and bask in the sun and play in the surf.
22. My illness has taught me: I have limits.
23. Want to know a secret? One thing people say that gets under my skin is: you look as bad as I feel. All you can think is - I look bad??? or are they feeling really good? Sooo confusing.
24. But I love it when people: give me information/advice about headaches. You never know when you will learn something new! I found out that mosquitos don't like it when you take too much niacin - a fantastic summertime tip that didn't help the headache, but was interesting.
25. My favorite motto, scripture, quote that gets me through tough times is: The 23rd Psalm:
The Lord is my Shepherd; I shall not want.
He maketh me to lie down in green pastures:
He leadeth me beside the still waters.
He restoreth my soul:
He leadeth me in the paths of righteousness for His name' sake.

Yea, though I walk through the valley of the shadow of death,
I will fear no evil: For thou art with me;
Thy rod and thy staff, they comfort me.
Thou preparest a table before me in the presence of mine enemies;
Thou annointest my head with oil; My cup runneth over.

Surely goodness and mercy shall follow me all the days of my life,
and I will dwell in the House of the Lord forever.
26. When someone is diagnosed I’d like to tell them: keep trying specialists until you find one that actually communicates with you and has some sense.
27. Something that has surprised me about living with an illness is: how quickly it takes over your life.
28. The nicest thing someone did for me when I wasn’t feeling well was: sit for hours in the emergency room and driving me home in the wee hours of the morning.
29. I’m involved with Invisible Illness Week because: its a fantastic education effort to bring awareness of invisible illnesses to the forefront.
30. The fact that you read this list makes me feel: glad I decided to participate.