How it is

Understanding comes slowly.
Unyielding pain and suffocating breathlessness are the messengers.
They give a glimpse, a taste of some who have gone before.
How it is to be under constant siege.
Relentless.
Never Ending.
Until everything ends.
How it is to hold perverse jealousy for those who have made their escape.
How it is to wish it were me instead of them, and to know that is pure selfishness.
How it is to have only a distant memory of life without pain.
How it is to realize it was all taken for granted.
How it is to wish for a way, an avenue, an exit.
From pain.
From hopelesness.
Vic and Bett, I miss you.
And I'm beginning to understand you.
Please forgive me, I never knew.

My Budding Actress!

Amanda recently performed in the production ?!CINDERELLA!? at Milton High School, and at Regional Competition (in which they won third place!!). This is my favorite "headshot".

A picture is worth 1,0000 words. 

Treatment Started - FINALLY!!!

My Pulmonologist does not want to treat my MAC infection because my results are "too inconsistent". This was pretty devistating to me, especially since my parents drove me all the way to Tyler, TX to see the MAC specialist. I have to admit I was down in the dumps for a few days over this. But in the end, I decided not to let the opinion of one doctor who barely knows me shoot down my hopes. After my 4th Pulmonologist, I've concluded that there is something in their medical training that precludes them from empathy. They just don't get it. I think it has something to do with the fact that they are taught that the lungs don't have the capacity for pain. Whatever it is, BEWARE of them. I much prefer the Infectious Disease doctors and Rheumitologists.

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Thank God for my Rheumitologist.

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She prescribed the drugs and is going to monitor the 6 month MAC treatment.

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Wouldn't it be amazing if my cough went away?

Wouldn't it be amazing if my chest pain went away?

Wouldn't it be even more amazing if my joints got better?

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I am so grateful to have at least one doctor that LISTENS TO ME and is willing to TAKE A CHANCE ON ME. I started treatment yesterday, so we'll see how things are on 4/25/05.

~

I have faith.

I will be better then.

April 25, 2005 will be here before I know it.

Mystery Solved?

So maybe it's not just your garden variety FAT after all. My dear father in law has educated me on Cushings Disease, which occurs when your body either receives or manufactures too much cortisol. I've had these strange purple streaks on my skin for months now and turns out that is a classic symptom of Cushings. Quoted from WEB MD below:

"Cushings syndrome is a rare disorder in which body tissue is exposed to excess levels of the hormone cortisol, which helps the body manage stress and plays a role in regulating the Immune System. Cortisol levels increase when the pituitary gland in the brain releases another hormone called adrenocorticotropic hormone (ACTH). Because cortisol influences almost all body systems, Cushing's syndrome may cause such diverse symptoms as WEIGHT GAIN, LOW BACK PAIN, SKIN CHANGES, BLUISH-RED STRIPING, SEVERE FATIGUE, MUSCLE WEAKNESS, DEPRESSION, DIABETES, and HIGH BLOOD PRESSURE. If untreated, Cushing's syndrome can result in death."

OK, so I'm overdosed on steroids. Like I didn't already know that. HOW TO GET OFF OF THEM IS THE QUESTION???????? This has got to be priority 1 when I see my Rheumy next week. With Cushings, no matter how hard you diet and exercise, you just keep exploding bigger, bigger, bigger. And then you die.

FAT

I can't breathe and my chest hurts.

When I lay down I feel like I'm suffocating.

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That's because you're FAT.

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I haven't been able to breathe, and my chest has hurt for 3 YEARS.

I've only been FAT for 1 YEAR.

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I didn't hear that.

It's much more convenient to blame your symptoms on your FAT.

Then its all your fault.

Then I don't have to help you.

You do realize, that FAT people don't get any help, don't you?

They get sent away and told to lose weight.

We don't believe what they say either.

In fact, we don't really listen to them at all; we just smile and nod and hope they hurry up and leave so we don't have to look at their FAT ugly bodies.

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But I wasn't FAT until the doctors gave me all the drugs that made me get FAT.

It was the DOCTORS and their CURES that made me FAT!!!!

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I didn't hear that.

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Have you ever taken Prednisone?

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I didn't hear that.

-------

Have you ever tried to lose weight on Prednisone?

-------

I didn't hear that.

You are FAT and so I'm not going to help you.

I'm going to send you away so I don't have to see you.

And I don't have to think about you.

Go lose 23 pounds and come back in 6 weeks.

Then, maybe I'll look at you and see a real human being.

Instead of a FAT slob that doesn't deserve help.

Then, maybe I'll listen to what you're saying and maybe I'll even believe some of it.

Stop crying because it makes ME feel bad.

It's not OK for ME to feel bad, just for YOU to feel bad.

Stop crying because it will ruin MY reputation.

It's ok for you to feel like you're dying inside, just don't cry in my office.

Just don't let me have to see your pain.

It spoils my nice, neat, little professional, happy, skinny day.

Just go away.

Quickly, so I can start to forget you.

Because you're just FAT, not SICK.

Doing the Work of the World

I just couldn't resist posting this great photo sent to me by Grandpa Bill. Look closely at the patches below the United States flag. FYI, the black patch says 'Doing the Work Of', and the 3 country's flags are France, Germany, and Russia. It's great that these guys can have a sense of humor amidst such difficult circumstances.
Doing the work of the World

Democratic Strategy Session

It's just Bill C. and Jim C. with Hillary conveniently out of sight (but within earshot). There, now all set for the denials: "I was never a party to any discussion.... blah blah blah".

Bill: Glad you could make it up for the weekend Jim. Want a beer?

Jim: Sure. Anytime.

Bill: Our buddys John and John need some HELP. I think you should just go over there and HELP them.

Jim: Hmm.. maybe. Wonder if it would be worth my while?

Bill: Sure, Sure, I bet you could rake in a few million just to get the pot stirring good.

Jim: A few mill sounds good to me. But do you really think those clowns have a chance?

Bill: Jim, Jim, you're missing the point. I want you to HELP them. You rake in a few mill now, then the REAL gravy train starts up again in 2008, Hillary style.

Jim: Well, NOW you're talkin' bud. I think I'll give them a surprise visit and offer my SERVICES.

Bill: Good. I like it when Hill is in a good mood. Want another beer?

Jim: Sure, pass it down

Home Sweet Home

Home Sweet Home

It truly is great to be home again. AND it is truly great that my surgery went well. Only 4 small holes with band-aid type things on them. I had to stay a couple of days extra in the hospital due to my lungs not cooperating, but now I'm back. I sure hope I feel better with one less organ. One things for sure, the gall bladder may take up space, but it has no weight. The scale doesn't lie and it didn't change : - (.

Duped

John Kerry and John Edwards... what can I say? Just two unfortunate dupes that wound up on the Democratic ticket (cause they had to have somebody). Just a couple of place holders until the real force behind the Dem's (B & H Clinton) ascend back to the white house in 2008.

Katie's Visit

Katie and her children playing with Amanda's birds. We had a great visit with her family and hope they will come back soon!

Wedding Ring

It finally came off tonight. I've been trying to get it off for months and the Edema is so bad that tonight I had to go to the ER and get it cut off. My finger feels much better, but my once beautiful ring is quite a mess. O well, it's just a bit of gold. And like the old country song says, "Only LOVE can make a golden wedding ring". Thank God the LOVE part is still intact.

You're Fired

Today I fired my Pulmonologist. I switched to a new one, a doctor that is more available to attend to patient care. She was my doctor while I was hospitalized in May for Pneumonia and I really liked her. So even though my joints, edema, breathing, and everything else really stinks today, I feel a little better to have taken care of this. So There.

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.

Residence Inn Tyler -- Tyler, TX USA ; Hotel Rates and Reservation Information Available at Marriott.com

Residence Inn Tyler -- Tyler, TX USA ; Hotel Rates and Reservation Information Available at Marriott.com
This is where we will stay while in Tyler.

OK, now I'll answer the question "Why have you been out of work for a year?".  Well, it's a long an ongoing saga.  I had major surgery in 2001 that went bad, real bad.  Ended up with really bad internal infections.  really sick and yukky. 

After 'recovering' from all of that, after about 6 months, I started having a funny ache in my chest and a nagging cough.  Went to the Dr. and he said don't worry your pretty little head about it, blah blah.  But it never went away.  Then a few months later I started having fatigue.   Not just regular fatigue like "I just mowed the lawn and I'm tired" fatige... This is like KILLER fatigue. 

It went from bad to worse.  For the next 18 months I was either in bed asleep or at work.  Nothing else.  No Life.  Then in July 2003 the Doctors finally found "something wrong" (I think you have to be half dead before they can find anything).  Enlarged lymph nodes throughout my body.  They said it is Lymphoma or Sarcoidosis and did a biopsy.  The biopsy proved it was Sarcoidosis (don't worry, no one else has ever heard of that either).  The doctor said "You are so lucky!  All you have to do is take steroids and you'll be all better in a week".  HA HA HA HA HA. 

It didn't work that way.  Yes, I took the steroids, but no, I didn't get better.  Then in December 2003 I awoke one morning with "telephone pole legs".  Thats what I call them.  Suddenly I didn't have knees or ankles.  Just big appendages that HURT LIKE HECK.  Ok, so now off to another specialist.  Diagnosis:  Inflammatory Arthritis (better known as Rheumitoid Arthritis).  So I had to go back on Steroids PLUS the chemotherapy drug Methotrexate.  That was in January 2004. 

In May 2004 I spent a wonderful week in "Spa Crawford Long" Hospital with Pneumonia, and while the docs were running their tests, they found MAC (don't worry, no one else knows what that is either).  MAC is non-contageous TB.  Yep, that's right TB.  So now I'm 6 months into autoimmune SUPPRESSING therapy and find that I have some nasty bugs in my lungs (and possibly elsewhere) that need to be SUPPRESSED. 

It seems that the best treatment for MAC is in Tyler, TX.  There is a doc there that is world renowned for treating it.  I met a gal who has been under his treatment for 9 months and IS GETTING BETTER.  So I made the appointment and can't wait to get there.  My parents and I will travel there during the last week of August.

Meanwhile I've developed some major pain right below my ribs.  So off to another specialist who is in the middle of her tests.  Her hypothesis is that the Methotrexate is causing swelling in my Pancreas.  I did some research and found the MTX can also cause cirrosis of the liver - I found a gal that had been on MTX for 2 years and now is waiting for a LIVER TRANSPLANT!  So what's a girl gonna do?  The cure maybe worse than the disease(s).

Well, thats my story and thats why I've been out of work for a year.  I'm hopeful that the MAC is the key to unravelling this whole mess and to getting my life back.

My Dear Father-in-law, Bill Allen, has inspired me to visit my now 1 year old BLOG.  I was just goofing around one day and started a BLOG but never added anything to it.  Now I think I might do as Bill is doing, and post my thoughts to it periodically.  Today's highlights have been a phone call from pastor Mike, a visit from Shellie, and a check in the mail from State Farm.  Not too bad for a day and it's only 5:05.  My hubby will soon be home, maybe I can get him to go to DQ and get me one of those Coffee Moo Latte's... those things are addictive!