update

I have great insurance. Especially since I have diagnosis established. Kaiser doctors for the most part are really helpful...
I told my primary doctor I was having more headaches. He refers me to the neurologist/headache doctor. I also get referred to PT.
I saw the neurologist this week and she referred me to the pain clinic. She had some suggestions but wanted to see what the pain clinic said.
Today I saw the doctor at the pain clinic. She was super helpful. I got prescribed Lidoderm patches for my shoulders. She wants me to wear them religiously on my shoulders every day. So far it is helping enough. Though today my spine was hurting pretty bad. Stupid EDS.
Anways, I say that my doctors are great because each of them take seriously my Chiari and Ehlers Danlos conditions. They take seriously my migraines. They take seriously my susceptibility to bleeding when I take NSAID's.
My neurologist suggested switching my depression meds to a pain prevention kind but my pain doctor said it would only help a little due to my connective tissue disorder. She knows her stuff! She said she has worked with several EDS patients.
I go in tomorrow evening for a checkup MRI to check on any signs of Chiari.
Cant wait to start physical therapy on Tuesday!

Here's what I'm taking/doing:
Celexa
Tramadol
Tylonal
Aleve
Calcium + Vitamin D
B Complex
Lidoderm patches
Tiger Balm
Blue Emu cream
Ice packs
Heat packs
Heel cushions

I see the pain clinic Dr in two weeks. I see my neurologist in a month. I see PT next week.

A Wonderful Resource!!!

http://thedysautonomiaconnection.org/

Check it out!!

Chronically Kyli's Story

Very Inspiring: Thank you Kylie! Your story is a support to all who are chronically ill.

Things that help me:

1) Maxalt for migraines
2) Tramadol for Ehlers Danlos flare-up
3) Celexa 20mg preventative for pain, used for depression/anxiety
4) Calcium and Vitamin D for Ehlers Danlos, also gives me energy
5) Vitamin B Complex for energy
6) ice packs for Ehlers Danlos flare-up
7) heat pack for migraine and Ehlers Danlos
8) wrist, ankle, and elbow bracing for Ehlers-danlos flare-up and when I expect to use joints more
9) Blue-Emu cream for muscle pain
10) exercises: elliptical machine, swimming, dance classes all at my own pace and I stop when I feel overheated


I ordered a home ultrasound unit. I can't wait to use it!

Pleased to Announce

only a spoonie would say that as the title..lol

I officially have the EDS diagnosis. I got some bloodwork on collagen and Im going in for an Echocardiogram sometime soon. Its not totally important to do right away so thats good.

Im blessed with some pretty good doctors at Kaiser.

another great link

TITLE: Epistaxis
SOURCE: Dept. of Otolaryngology, UTMB; Grand Rounds
DATE: October 16, 1996
RESIDENT PHYSICIAN: Stephanie Cordes, M.D.
FACULTY PHYSICIAN: Francis B. Quinn, Jr., M.D.
SERIES EDITOR: Francis B. Quinn, Jr., M.D.

"Delayed massive epistaxis following endonasal transsphenoidal surgery "

"Summary Objective. To describe delayed massive epistaxis, a rare but serious complication after transsphenoidal surgery.
Patients. Two patients underwent microscopic transsphenoidal surgery through a right endonasal approach for nonfunctioning pituitary adenoma. Severe epistaxis suddenly developed on day 8 and on day 13, respectively, after uneventful surgery. In each patient, the epistaxis was due to arterial haemorrhage from the left posterior nasal cavity. Otolarygologists failed to detect the origin of bleeding which was refractory to conservative treatment. Emergency internal carotid or external carotid angiography, performed during tight packing of the posterior nasal cavity, did not show abnormal findings; nevertheless, each patient was treated successfully by endovascular embolisation of the external carotid artery without further complication.
Conclusion. When severe delayed epistaxis follows transsphenoidal surgery and damage to the internal carotid artery has been ruled out, endovascular embolisation of the external carotid artery should be considered in patients refractory to conservative treatment. "
springerlink.com

maxalt to the rescue!

Had a terrible migrane since yesterday afternoon. Went to the Urgent Care near me and got Maxalt. Works great. Life is so much better without migraines... but im a bit sleepy because of it. totally worth the tradeoff...

dr appointment

My Internest GP doctor appointment went really well. We went over all the bloodwork that was taken and Im happy to announce that there are no blood disorders including von willenbord disease! And they also tested already for any lupup and other similar disorders. The only thing is Im pretty anemic and Im restricted from any asprins and such. I got my GP to refer me to a geneticist to test for Ehlers Danlos officially. I have a few relatives with chronic pain and joint problems who also can move hypermobile like me so that helped my case. It also helped that I have a previous dx of Chiari Malformation and surgery. Every day Im gaining more energy. So good report.

Possibilities

von Willebrand disease
History
The most common symptoms include nosebleeds, skin bruises, and hematomas. Prolonged bleeding from trivial wounds, oral cavity bleeding, and excessive menstrual bleeding are common. Gastrointestinal bleeding is rare.
•A common but nonspecific symptom is easy bruising.
•Prolonged bleeding after minor trauma to skin or mucous membranes is characteristic of vWD.
•Severe hemorrhage after major surgery is less common, but delayed bleeding may occur up to several weeks after surgery.
•Heavy bleeding is common after tooth extraction or other oral surgery, such as tonsillectomy and adenoidectomy.
•Menorrhagia is a common presenting complaint in women.
•Bleeding symptoms are often exacerbated by the ingestion of aspirin and are ameliorated by the use of oral contraceptives.
Physical
Physical examination findings are usually normal. However, patients may have physical sequelae, such as bleeding or bruises.
Link To Article


SLE
I want to be tested by a rheumetologist for SLE due to these past test results

Ehlers Danlos Syndrome
Refered to a geneticist to get specific dx for this. Hypermobility Demonstration

worry

im having bad anxiety tonight. today my head pain was worse, took more percocet and was extra nautous. On top of that i was extreemly tired and napped pretty much the whole day. at one point i was shivvering and needed to have 2 blankets covering me to stop. the morning wasnt so bad when it felt like i was just sleeping in. but the evening brought its looming scent and now i worry,.. i took some ativan.

Getting Better

Every day Im gaining energy. The day after I came home I couldnt even lift my plate, but the following day I was able to put my plate in the sink. Today I made myself breakfast. Im sleeping alot a few of the days Ive been able to go out for a few hours. Yesterday I went to church. The percocet is definitely helping. today Im taking more of it since Im in a little more pain but I think that is due to me doing a bit more every day and reusing my muscles.

uncontrollable bleeding after sinus surgery

Since Im too tired to write it nicely Im just reposting here what I have written so far about what has happened. Im getting suggestions from friends who are nurses and ones who have EDS and such to get tested for some things. Im making a list and hopefully can get my general doctor on board. Im pretty weak today.

______________________________

I had a typical surgery for sinusitis. A week later got the packs removed. Last thursday my nose was hemroging. I lost and swallowed so much blood it was pretty scary. Went to er and had emergwncy surgery breathing tube and everythingm I was in icu for two day. Stayed in the hospital for two more with packing in my nose and terrible pain. Went in tuesday to see my ent to take out packing and bleed right away. Admitted again and sent in later that night for exploratory surgery to find source. They couldn't see anything on the surface so he decided to close off an artery so the bleeding would cease. So far so good. I have dissolvable packing now so there won't be any more problems taking it out. I'm on disability from work for a little while I recover.

______________________________-

had some prettty bad complications from my surgery. Last Thursday night around 2:30 my nose was bleeding so bad i had to call 911. They couldnt stop the bleeding until around 8am and the emergency ENT came and did some surgery. They almost had to give me a blood transfusion my blood count was so low. I was in the hospital until Monday with packs in my nose. On tuesday I wen tot see my ENT and he took the packs out but I started to bleed again. I was admittted in the hospital and that night they did exploratory surgery to see where the bleeding was coming from. The doctor had to tie off an artery that would have supplied the blood. Im home now and resting alot.

feeling good today suprise suprise

today i felt pretty good. first time in a long time that has happened, I ususally push through the day thinking about how it sucks to have to push through the whole day and not be able to function practically after work and thank God i live with my parents these days so I dont have as much as far as house work goes as i used to... yesterday i went back to work. it was raining and all my joints were hurting. I was feeling a little weak and my hips both felt like they were gonna fall out. But by the end of the day I was feeling much better and actually rejuvenated. Last night I felt well enough to shower (not that I dont shower) and feel happy with my night sleeping soundly. usually im having to pass out with pain meds, find something random to eat and use a heat back or ice on my back through the night depending on whats hurting.
in the middle of the night though i woke up so i went on teh computer. I leaned on my shoulders too much which caused me some pain. My sinuses were inflamed slightly so I took some ibiprofun.
When I dont get enough rest like 8 hours at least at night im usually wanting the rest in the car on the way to work or the hour before work i have to wait until i start. Im usually resting a lot during the day too as much as I can. Today was different.
Maybe its all the prednisone Im on. Maybe its my sinus surgery doing its job. Maybe its because it was a good weather day. Maybe its my antidepressants. we shall see. But more importantly: After a little while Im going to start a regimen of vitamins and such like I did at one point I think in the begining of 2008 to help combat pain and inflamation. it will be like a dubble wammy on all this crap.

Sinus Surgery

I had my sinus surgery yesterday. On a scale from 1-10 my chiari surgery pain level was at a 12. This surgery was at about a 6. Yeah. A walk in the park. I think the worst part of it is feeling really weird when the anesthesia isn't quite gone. My nose is still bleeding but I'm hoping this surgery helps my sinuses and subsequent migraines and shoulder tension as well.

I found out I'm allergic to Demerol. Before my surgery I was given a small dose through my IV. My arm hurt immediately and it also started to itch. They slowed down the IV and gave me a new bag of saline to go with it.

Ive been on my antidepressants for about 2 weeks now and they seem to be helping. This round has been triggered since my move at the end of November. In general it should not only help my depression but my pain levels.

some info

Proverbs 27:7
He who is full loathes honey, but to the hungry even what is bitter tastes sweet.

My sinus surgery is scheduled for February 17th. Its my first time being with Kaiser. So far its been nothing but helpful. I think my history with healthcare and self care has prepared me to be my own advocate when it comes to my health.

Multiple sinus infections. Chronic sinusitis and drainage. Nausia. Migraines. I can't wait for some relief.

When my sinuses are inflames my neck tenses and so do my shoulders.

Ive taken many days off work due to these infections I get quickly after a minor cold.