Wednesday, September 30, 2009
Tuesday, September 29, 2009
Sunday, September 27, 2009
Thursday, September 24, 2009
I am tired of 2009 already. I want it to be 2010 - a new year without these old problems.
Sunday, September 20, 2009
Saturday, September 19, 2009
Friday, September 18, 2009
Monday, September 14, 2009
Sunday, September 13, 2009
I've had a hard time going to sleep this past week. I finally took some sleep inducing medication last night and then overslept big time today. Yesterday was not a very good day, and I didn't get much done today because I'm still very very very tired. Drugged sleep is not always restful sleep.
The Headache was active yesterday but is not bad this evening. I'm not sure if its the weather, or because I'm trying to work full time again. I'm hoping its the weather.
Wishing the sandman would come and put me to sleep. I would even put up with some nightmares! Hoping I get some quality sleep in before the client visit. Sleeping in hotels is not easy either. Ah well, I better quit whining and do something productive if I can't sleep! Good night all!
Friday, September 11, 2009
Wednesday, September 9, 2009
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.
Tuesday, September 8, 2009
Friday, September 4, 2009
Shopped this evening after work to find some foldable lawn chairs to bring to my Mom's family reunion this weekend. I wanted old fashioned aluminum folding lawn chairs but of course there were none of these, just those cloth sling "fold and put in a sack" chairs. Not my favorites but I bought them anyway.
The Headache is not happy about all the walking I did trying to find lawn chairs. It's talking to me this evening. I'm going to sit quietly in a little while and practice my biofeedback. The facial and eye pain is gaining on me. Please, Lord, just one weekend without complications!
Debating about whether or not to take my dog Augie with us. I have reservations at a hotel that allows pets. We've stayed there before with Augie - he loved it. The elevator doors would open on one floor and there would be one set of people to see, and then the doors would close and then open again and like magic there was an entire different scene with different people! He especially liked the automatically opening doors. There are just going to be a lot of people there, and I don't know how Augie will like it.
My Mom's family is huge. When I see the Duggar family on TV I think of what growing up in my Mom's family must have been like. Mom said they ironed and pressed their underwear flat in order to get it to fit in the drawers and my grandmother would create new dresses out of shirttails and old skirts. The family of my Mom's brothers and sisters goes like this in descending order oldest to youngest, with Anna and Ralph being the only two still with us, the rest having already passed on.[Note revised this AM per input from my Mom, with nicknames added).
- Leon (Young Man)
- Vivian (Vi)
- Ethel (Rube)
- Pearl (Jane)
- Harold (Wheech)
- Maxine (No nickname - died in childhood)
- Lileth (Min or Ginger)
- Clarence (Mac)
- Henry (Stub or Hank or Lennox)
- Geneva (Doze)
- Nadine (Dinny)
- Nonavee (John)
- Anna (Snooks)
- Retta (Rexy)
- Ralph (Pood or Allen)
Someone once asked me if my grandparents were Catholic, and I replied, no just Prolific, to which the person who asked the question said "What kind of religion is that?" to which I replied "It's one you have to practice a lot!"
Grew up with a lot of people having nicknames from my Mom's side - Mine was Sisseroo, my brother was MullGrinder or Grinder, I had cousins named Snake and Fox.
- Vivian (Vi)
Thursday, September 3, 2009
Wednesday, September 2, 2009
Too Many Windbags
I was reading Stephanies post at Headwise about trying to go to a new neurologist, and it gave me flashbacks to some of my experiences while trying to get a diagnosis for The Headache.
It torques me when neurologists play amateur psychologist with patients. If they were any good as a psychologist, why were they practicing as a neurologist?
What they seem to find (when in my opinion they are piss poor diagnosticians) is "somatization disorder", where internal psychological conflicts are exhibited as imagined physical ailments. But to quote the Wikipedia entry on this disorder "There is a possibility in some cases that the condition is more a factor of the physicians lack of knowledge, or attitude to chronic illness, than any psychological factor in the patient."
No Duh! Being a patient of one of these jackasses is enough to give you a disorder called "Spent a lot of Money for a big lot of Nothing" or "Empty Pocket Syndrome." A clue is that instead of really interviewing you they start right in on the psychological bull hockey. Yet most of these dingleballs won't refer patients to psychologists because a real psychologist might wonder how they reached their conclusions.
Psychology and psychiatry have their place in healthcare, but these disciplines should be practiced by persons who spent years studying and working in these specialties, not the armchair quarterback neuros that are so used to seeing cognitively impaired patients that they can't handle it when they get one with critical thinking skills. I don't go into a physician's appointment expecting to have to argue with the doctor - after all I and my insurance company are putting out some bucks for an expert opinion - so why does the physician go into the appointment determined to argue with the patient or immediately disbelieve and invalidate the patient's story?
I guess this is enough of a rant and rave on this subject. I am sorry Stephanie in the vulnerable role of patient had to put up with some pompous windbag who probably didn't want a headache patient in the first place. And I have a rogues gallery of similar neuro's met along my headache journey dancing in my mind I'm determined to never see again. And then I find one like my current headache specialist who is open to communication and understands pain and the debilitating effect it can have on the body and the psyche...treat the source of the pain, and all else falls into place.