Want to Run Away

Bad Day, Bad Week

Ready to run away.  If I could get away from The Headache, The Belly, and The Legs I would.  I guess all that would be left would The Arms and The Back....hmmmm guess that's not practical.  Sigh.  My problems are inescapable but wishing they weren't.

New diabetic medicine, more thyroid medication from a new specialist, an endocrinologist, Dr. Kid (he seems very very young!).  The cankles are disappearing so maybe the low thyroid was to blame for cankle hell.  Will be glad to wear regular shoes again instead of the cankle friendly models I have been sporting lately. Not excited about changing diabetic meds since my diabetes is the one thing in good control...but he had a point that Avandia has had some pretty bad press lately, so instead of Avandia and metformin I am taking Actos and time released metformin.  Can't tell any difference so maybe that's a good thing!

Bad headache day Friday.  Not to the emergency room point, but bad enough I had to take major meds in order to NOT go to the emergency room.  Payback for the week and the traveling.  My head is still not working today, but I am trying to go medication free since I had things to do.  Actually napped for a while today which is really rare for me.

I feel ready to throw in the towel this weekend.  No energy, no mind power left. I'm tired of dragging my legs around trying to make them work, tired of the pain, tired of being tired, tired of coping, tired of traveling, tired of work, tired of things NOT working, tired of medication, tired of being sick, tired of doctors.  I want to jump up and down and throw a screaming fit about it all!  But I'm too pooped to do it.  Being old and tired and sick sucks, can't even throw a decent tantrum any more.

I knew I would pay a price for traveling to Michigan.  I went anyway.  This is my own fault.  I could have said no.  Too late now.  I need to quit griping and just live with the consequences.  I'm just not as tough as I used to be, not as tough as I want to be, not as tough as I thought I was.   Arrrrrrgh.  I'm just going to have to suck it up and get on with business.....if I can.

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.