Dixie Chick
Just Me
May 22, 2008
WOW! It's Already MAY!!
May 04, 2008
I am now 5 years out!! I can't believe it!
Last Wednesday, April 30 I had an EGD done because we suspected that i had a stricture and sure enough, I did! I got to where I couldn't eat or drink or even take ALL my meds without having massive chest pains so I knew something was wrong. I still have a slight sore throat, but it feels much better. More later today.....lots to tell..Back now!
I could not eat today! Geezzz, now what? Is the stricture back? I can barely drink enough to swallow my massive amount of pills that I have to take to stay ALIVE!
I did get referred to a pain management clinic PTL!! PTL!! I have 2 different patches and I am still trying to get used to them and see if the dosage is correct. I go back in 2 weeks to see the Dr at the PMC. I am so glad to be getting some relief even if it is not taking away ALL of my pain. I have 3 doctors to see this month and still waiting to hear more about what & when they are going to send me to Emory for the heart issue. Ok that's all for now......Ohhh BTW, UNJURY protein ROCKS!! www.unjury.com
Time Flies!! Sometimes.
Jan 23, 2008
I'll try to give a summary.
My health...it is not good. I spent most of the summer in & out of the hospitals. It was a very difficult time for us with just moving back here and all. Lots to juggle. At least we are back in Alabama! We moved in May.
*I was referred to a Neurosurgeon about my strokes and another diagnosis that was needed. He confirmed that I began having strokes in-utero. YES, before I was born! Geezzz. We will never know for sure how many strokes that I have had, but we guess about 2 recent and a few TIA's (2007). I also have Lupus (SLE), RA and OA (active-no remission yet),connective tissue disease, Fibro & musculomyalgia and a few other things related. I am on meds now and at some point will be on chemo (pill form first) but we want to try other things first. I am so miserable 99% of the time. Sometimes the pain is unbearable. I have a good Rhuematologist and a good Neurologist that work well together (ha!). At least we are getting something right for now. Maybe things will start to get some better. For people that don't have this combination of illnesses, they don't know the pain & feelings that it causes. I had episodes that caused me not to be able to walk, disrupted speach, and could not write. It was a very scary time. It is still scary- not knowing. It could strike at any time, without warning.
The TIA's are what's keeping me in the ER now days- when they strike.
I'll update more as I can.
Why?
Mar 15, 2007
I am waiting on the Dr's office to call me. We are trying to get this pain under control. We are talking about a patch. I just want to feel better. I got an email that a friends husband was just diagnosed with cancer & given MAYBE 3 months to live. So, yes I do see that there are things much worse than Lupus. We just have to experiment with meds & get me better. Most of all PRAY.
Diagnosis
Mar 07, 2007
Wow. I just am still overwhelmed, but we knew this was a possible diagnosis. It can be treated with meds even though it is not curable. This does run in both sides of my family. I am also being tested for rheumatoid arthritis, but he is not really thinking that I have that.
I was given the go ahead by my ear/skull base surgeon to start the meds. I will have to have eye exams every 6 months due to the fact that the meds cause toxicity (sp?) in the eyes and because I do have posterior subcapular cataracts. *sigh* They just need to watch them to be safe.
I am glad that GOD made it possible for the doctors to figure this out and I pray that I will be able to start the meds soon. Please keep us in your prayes that we can get that worked out.
Tuesday March 6 DENTIST!!!
Mar 06, 2007
I NEED to be knocked out! I slept for one hour today before the phone woke me up. I needed it and more.
I did ask him about liquid pain meds and he said NO, he gave you pain pills yesterday. GRRRRRRRR I explained about the GBS and he really didn't care at all.
Goodbye to those brother dentists!! See ya! We are going elsewere!
When am I moving?? Not SOON enough!
OMG MY MOUTH!
Mar 05, 2007
Update: at 3am the packing came out. I was having a hard time sleeping because of the pain anyway, but then I awoke to a nasty taste which was the packing. OMG The pain is unbearable. I have not slept. Called the dentists' office and first talked to the office manager. She called back and said the dentist doesn't know what to do at this point (really?) I dont either. I still cannot eat or drink. I have got to be dehydrated by now. He referred me to an oral surgeon but they can't see me until Monday. This is Tuesday!!!!! OMG I will either DIE by then or be healed. The pain is horrible....Dan is not in town and I am so ALONE.
It's March!
Feb 28, 2007
Had to go to the dentist yesterday. That tooth couldn't be saved and he had to surgically get it out. So maybe my mouth will feel better soon. I am headed out to the Rhuematologist today, so I will update later today about that......
My sweet friend Zeelinda did an wonderful thing for me..
Dixie Chick/Lindy needs us
Original Post by Linda Dissinger at 1:39 PM CST on 02/28/2007
Newport, PA
Dixie Chick/Lindy Needs U$
If you would like to find out how we can help her please check for details on my blog and then PM me. (All responses are CC to her.)
Thanks,
Linda
*I was in tears.....Zeelinda is a great friend with a MAJOR heart!
Here's What The Doctor Said ...Post op Ear Surgery
Feb 23, 2007
Well, it's Friday, Feb 23.......I was hurting so bad from the trip yesterday. *sigh*
The audio tested showed that hearing as improved very slightly since the surgery, except high pitched decibles has decreased. He said that it could be inflamation causing that. He was not happy that I was still having this amount of dizziness and pressure. But it should get better. The have a walk test that you do for balance, etc. I FAILED it big time. I asked the Dr. if he was going to catch me when I fell! It is highly possible that I will regain a great deal of hearing. I am going back to see him in one month. He changed up my meds again. The bills are drowning us! About the MRI/MRA ......he said that it COULD have been a stroke or head injury. It was not ACUTE though, meaning that it was not recent. The is a portion of my braain (right cerebellum) that is GONE! It is nothing but brain fluid! That affects the motor function, dizziness, speech issues, and thought process. THe Neuro says that there ARE things that we can do. Don't know what yet. Appt. next week and I also go back to the Rhuematologist next week to find out for SURE what I have.
I need to have a Neurologist when I get moved back to AL. There is always the chance that IT could happen again or just as well NOT to happen again, It's a toss up.
I still have yet to have the cataracts of the unknown (grr) taken care of. I am TRYING to be able to buy my new contacts and I will eventually have to have surgery to remove the cataracts. They are Posterior Subcapular Cataracts....not your grandma's cataracts. Why me??