Texas Updates

We had a pleasant but quick trip to Texas to see Dr. Wallace. I was very impressed with how much time he spent with me and reviewing my chart. He agreed to put me on a 6 month trial of antibiotic therapy. I will take 3 different antibiotics on Mondays, Wednesdays, and Fridays, as well as send in monthly samples to the lab to monitor progress. The antibiotics are similar to what AIDS patients take. I pointed out what a mess his web site is in and tried to barter with him, (testing for medical services) but he didn't go for it. He did have to concede, however that his site is a mess. I'm sure the bill is in the mail. I am hopeful that this will help with my low energy and clear up the cough I've had for 3 years. The treatment does not address the Inflamitory Arthritis, or the Sarcoid, but at least I'm making progress on the infection front. I plan to start on Embril for the Arthritis after I have gall bladder surgery, probably in October. I am very grateful for the opportunity to go to UTHCT and for my wonderful parents for taking me there.

A Place to Think

I went here once.
All alone I hiked about an hour into the forest.
Then found this lovely place and rested.
The water was ice cold on that hot Summer day.
And I want to go back.

Purpose

'purpose' is a funny thing

you look for it

searching for it

thinking you can't live without it

thinking 'if only', 'if only', 'if only'

once in awhile catching a glimpse of something that sort of seems like 'purpose'

maybe 'purpose' is not something i am can ever grasp

maybe the only way to have a 'purpose' is to not know you have one

maybe it's all much simpler than i thought

maybe all i need to do is

be.

Breathe

in, out

slower

slower

deeper

be still

now. thats better.

don't move

stay cool

in the dark

and you can breathe

is this a life?

Thursday

Today started with a bang, or maybe I should say a bark. COCO wedged her way through one of the fence gates at 4:30 this morning and off she ran. Of course SCOUT then went into wailing and howling as these two litter mates are joined at the hip and can't stand to be apart. So my dear hubby had to go out and retrieve COCO and enclose both of the dogs on the back deck. He said by the time he got out there, COCO was trying to jump our neighbors fence and our neighbor was outside in his underwear trying to quiet down the whole mess.

On the medical front, wouldn't you know it - yet another diagnosis. Seems my gall bladder is not working at all. I think this must have been going on for a long time because I've had pain for over 1 year in that area that no one has ever been able to diagnose. Anyway, my Dr. says I need to have it removed. yipee. On the upside, maybe the malfunctioning gall bladder is one of the roots of all my other problems. So I'll probably have surgery in September after we get back from Tyler.

That's all for Thursday, August 12. : - )

My Latest Diagnosis

Today was Kidney Doctor day. He thinks I have developed Lymphedema as a result of my Prednisone weight gain and my Celebrex, or possibly due to Sarcoidosis, or even possibly due to my MAC/MAI infection. So its off for more tests to see for sure what is going on. The good news is that he thinks there is no kidney damage yet. Wow, this just never seems to end. At least I didn't have to eat radioactive eggs today.

NBC5.com - Health - Chicago Doctor To Begin Stem Cell Research

This Dr. is using (non embryonic) stem cells to cure auto-immune diseases like Sarcoidosis. NBC5.com - Health - Chicago Doctor To Begin Stem Cell Research

Simple Facts Sheets: MAC

Information on MAC/MAI. Simple Facts Sheets: MAC While it is most commonly found in AIDS patients, there are others (like me) who don't have AIDS, but do have MAC and/or MAI. So far 2 different organisisms have been identified in my cultures - one in the MAC group and one in the MAI group.

DBMD - Mycobacterium avium Complex - Technical Information

This is what CDC has to say about Mycobacterium avium Complex

RichardWallace

RichardWallace is the Doctor I'm going to see in Tyler. I found out about him from another lady that was suffering from Sarcoidosis and non-contageous TB also. She said he was wonderful and that after 9 months of treatment she is starting to be her "old self" again. Then a friend of mine, Lenny, asked another TB expert in Italy who I should see and guess what - she said this is the guy to see! So I'm very hopeful it will be worth the trip and will be the beginning of a change for the better.

Saturday

What a nice day in GA - especially for August! Everyone got up early and went to the Old Soldiers Day Parade and let me sleep in - yea! Amanda directed traffic and had to take down the barrier because a lady was having a baby in a van - really!!! She had to let them through to get to the hospital.

Afterwards we went to Mittie's and had a nice lunch and then to get our hair cut. I thought Amanda was going to go for it and get her hair cut short, but she didn't. I, on the other hand, did get a lot cut off. A new haircut always makes me feel better. My hair stylist, 'Marc', was full of wild tales about Viet Nam and conspiracies. It was a trip.

Michael is out back with sack-crete and rebar trying to shore up holes in the fence where our little digger COCO keeps digging holes. She digs the hole, then she and her brother SCOUT both escape and wreak havoc around the house until some one man handles them back into the fence. They are quite a duo. The other day they got into a bucket of TAR (left by our thoughtful construction crew). They spilt it all down the side of the yard and got it all over their hair. Scout is blonde so it shows up real good on him. Coco is black so it doesn't show on her. Amanda spent hours trying to trim the tar off of Scout, but it really was a hopeless case; it will just have to wear off.

At 7:00 everyone is going to North Park for a pick up baseball game. I'm going to stay home and stay cool. I will probably take a long soak with some bath bombs and Mango Butter and then put in a Yoga tape.

I just heard a yelp from the back yard and it wasn't one of the dogs... better go see if my hubby is allright.

Home Again

I've been away for a week in the hospital again and now I'm back home. I really hate to be in the hospital and miss my family - plus my e-mail gets so clogged up it takes me forever to catch back up! Anyway I'm trying to get my records together for my trip to Tyler. Emory is not cooperating and it's a pain. The coolest thing that happened in the hospital is that my stepson John called me on Sunday from California. He is at 29 Palms in training. He will ship out to Iraq in early October. He is going to be guarding a gate at some airport over there. I'm glad he is not going to be out in the streets too much. He is brave and young and strong and not scared at all. We are very proud of him. I can't belive Summer break is over. Amanda goes back to school on 8/9 and Will goes back on 8/16. Will has a laptop this year; at his school everyone gets a laptop starting in 4th grade. Pretty cool. He can play DVDs on it at home and he takes good care of it. Mom has taken the kids to Wal-Mart and Blockbuster so I better go grab a nap while I can... bye.