BAM!

Hubby finally came in from the dark and cold with Deer #1.
And so it begins....

Thankfulness

Well, Hallelujah.

Everything went great with my treatment, the needles barely hurt at all, we got there early and got out early, treatment ran smooth, and my neuro stopped up to see me. Everyone was like, Oh you look SO much better. I was like, yah, I'm not turning into a giraffe anymore. (Although a little extra height wouldn't have been bad...I could do without the spots).

So the neuro said I could cut down my prednisone time level and get off it in 4 weeks instead of 8. THAT, my friends, is wonderful news. Predisone is like a cure and poison all in one.

Hopefully now my eyes will get back to "normal" and we can get on with this thing called living. I was asking my neuro about why the eyes are so difficult to maintain control of in MG, and he basically said because they have to work PERFECTLY in order to see right. If your neck or shoulders are weak, or off by 10%, no biggie....you probably wouldn't even notice. But if your EYES are off even 2%, you'll see double. I was like, well, I guess that makes sense. The way the muscles work in the eyes are unlike any other set of muscles in the body as well.

Made me just think again at how much we take for granted. Before I got sick, I took advantage of every breath I took. I just assumed there'd be another following it. I never in a million years though how grateful I was that my arms didn't get weak when I folded laundry. Or that I didn't choke when I swallowed, or that I could work full time. While I appreciated my eyesight, I never really thought about the complexity in which God created it to work.

Made me also think of having a healthy baby. There are so many MILLIONS of things that have to go EXACTLY right to have a healthy, "normal" baby, and yet this happens thousands of times a day around the world.

For many of us, I fear, myself included, we assume so much. Until something "bad" happens, until the health isn't there, or the job, or the friend, or the sister, or the parent...until we lose something, we often don't appreciate it nearly enough.

Well, for the record, I am SO thankful for my eyes. I am SO thankful that I can see and hear, and walk. I'm so thankful that I have friends who love me. That I have an amazing husband and perfect little boy who both enjoy terrific health. I am thankful for medical technology that has saved my life over the last 8 years. I am thankful for skilled surgeons and people who invented more comfortable trachs so I can breathe better, and not have to be stuck in bed on a ventilator.

Most of all I am thankful that I have a God who tolerates my lackadaisical attitude and loves me wherever I am. Who won't give up on me no matter how ridiculously childish I become, no matter how spoiled I act, no matter how much at times I may grieve Him. I am thankful that He is faithful when I cannot be, because He cannot be untrue to Who He Is.

So today, just for a moment, think of something you might not normally take the time to be thankful for. Something you take for granted. And Bless God that you have it.

Oh to be NORMAL

So I get a call from the dermatology clinic at the U of M this afternoon saying that my tests came back "not consistant with Sweet's disease." They have a few more stains to look at to double check, but wanted to at least call to see how I'm doing.

I'M CONFUSED to say the least.

Right away I'm thinking, so the huge chunk they took out of my OTHER arm was basically for naught.

I'm also thinking so what the heck is/was it??

They say it was probably something called "granulomatous drug eruption," a rare reaction to the anti-biotic I was taking for the sinus infection I don't know if I really had as a result of the flu shot I will NEVER get again.

I can't find anything in English about this granuloma crap, so I'm not even sure what questions to ask. The doc just said don't ever take that drug again, or any in the same family. Lovely.

Just for ONCE I would like a doctor to say, "Oh my gosh, I know EXACTLY what this is, it's NO BIG DEAL and we have the PERFECT way to treat it that won't cause any pain, and doesn't cost a fortune.

Pardon me while I scoop myself up off the floor of utopia.

Stand Back

Well, as much as I hate Prednisone, it IS a miracle drug. Kind of the love-hate thing again. It works in so many situations where NOTHING else will, yet the side effects are horrifying.



After only ONE dose of Prednisone, my joints felt better the following morning. After two more doses, the pain was completely gone. The spots are almost gone, and my biopsies are healing nicely. They look pretty horrible right now, but I can tell they're healing correctly. I might have a little ripple in the research arm. I should have asked to see the size of the sample before I agreed!!! Nah, I would have done it anyway. If someone else can be helped by all the garbage I have been through, all the better!

On another health note, I got a letter the other day saying that because I am on disability, I have to start using Medicare as my primary insurance. AND PAY $97.00 a month for it!!! I was like WHAT?!?!?!?! Are you KIDDING me?!?!? I have fantastic insurance through Doug's work, and it only costs a little more than $97.00 for our whole family! I am NOT happy. I have to call the SS office and make an appointment to find out exactly what's up. Then, Doug has to change his insurance to 2 people (him and Jacob) with supplimentary for me, which will cost MORE that our plan right now, and half of my stuff won't be covered. Supposedly there is no prescription coverage. I spend $2500.00 a year in COPAYS...My CellCept is like $600.00 a month....I'm trying not to freak, because I know something will work out...but this is my worst nightmare. As far as supplimentary insurance, who the heck is going to take me with all my pre-existing conditions??? ARG. Not to mention plasmapheresis...like they're going to cover that every 3 weeks??

At first I thought this was Blue Cross doing this, to scare us or something, but it's actually a federal mandate. FEDERAL. As in GOVERNMENT. Even though people just elected a Socialist president, I thought we still live in a capitalist, free-to-choose-at-least-our-health-insurance country. You know, the whole Land of the Free thing??

I'm just furious. As soon as I have all the details from SS, I will be writing every government office from City to County to State to Congress...I'll probably e-mail the dang president. The one we still have anyway.

Well, I better stop so I can put the fire out that's coming out my ears.
Oh, one more quick bit of advice...If you're healthy now, get life insurance. As soon as you get REMOTELY ill, you won't be able to get it from ANYONE at any cost.

The newest Cheetah girl?

Okay.

So I go to Ann Arbor for plasmapheresis, but they take one look at my spots and say, OH no. They said they weren't going to start the treatment until my neuro came up. I asked them to page him and tell him that, because sometimes he comes up half way through the treatment.

I think some of the nurses thought I had MRSA. Nope. I could hear a couple of them whispering. I was like, oh for crap's sake it's not MRSA. Dr. Teener said he would try to get me into the dermatology clinic right away, but if he couldn't, I should go to the ER.

Now let me tell you something about U of M's ER. Last time I was there, I couldn't swallow, couldn't breathe well, my face was paralyzed, I had NO muscle tone and was in a wheelchair. We got there at noon, and I got into a room at 2 in the morning. I can't IMAGINE how long I would have been there with a skin condition!

Thank the Good Lord that I got into the derm clininc right away. After about 10 minutes, the doc went out to confer with her attending (it's always like this at the U of M. They send the newbie in first for practice or whatever, then the big guns come in and you get to tell your story all over again. AND get charged twice. Gotta love America.) And because it's not something they see every day, every intern, med student and other "helpers" came in to my room 2 or 3 at a time....once I think there were 5 in there. They all timidly knocked on the door and asked if they could come in and look at me. I thought about charging admission, but declined, for the greater good of mankind. Sure.

So they rather quickly concurred that I had something called Sweet's disease. See www.emedicine.com/derm/topic11.htm for some great information. The only way to confirm for sure is to do a biopsy. I'm thinking, tiny piece of skin, no biggie. Well, it was a shot of lidocane to numb it, and then a CHUNK came out that required stitches. Oooookaaaayyy. Then they asked if I would be willing to participate in a research study they were doing on Sweet's to try to determine the exact nature of the disease, why some people get it, why some don't.

So I say, sure, why not, if it can help someone else. What's another hunk of skin? I've got plenty to go around! So this other doc comes in and take a much bigger hunk of skin, about the size of a number 2 pencil eraser (never used.) Not so pleasant that one...he's like, oh look, isn't that cool! It's just like a hole in your skin...so I made the mistake of glancing down and seeing a hole in my arm filling with blood....Good thing I was sitting down.

So anywho...all said and done, I got 30 bucks for the second biopsy, which I didn't know I would get, and Jacob got a cool stick horse! I have to take Prednisone which is a miracle drug, but it's HORRIBLE on your system. Within 2 doses my joints felt better. But it makes my blood sugar go through the roof, and makes you moody, hungry, and gain weight. That's ALL I need.

So here's to me...spots and all...what could be next??

Fox in the Henhouse?

Well, it's over. The election I mean. I still held out hope until Obama won Pennsylvania and Ohio. Then I knew it was all over but the cryin'.

I PRAY that Christians use this opportunity to mobilize...to pray like never before for our House, Senate, President and country.

PRAY that this country will repent of her wickedness, turn from her evil ways, and allow God to heal our land.

PRAY that Obama will not be deceived. Pray that the American people will not be deceived!

PRAY that God will move in Obama's heart to change his opinions on things like abortion and homosexual marriage.

PRAY for our troops, as this new presidency may impact them immediately and severely.

PRAY that this country will unite...One nation UNDER GOD, indivisible. INDIVISIBLE. Unable to be divided. The die has been cast, folks. Now we have to run with it. Being ugly and bitter (okay maybe for a minute) won't do any good, because you can't change a thing.

And let's not forget the most important thing of all: God is STILL God. He is STILL on the throne. He is STILL in control. He answers to NO man. It is HIS purposes and plans that will prevail. Do not let fear strike your hearts, but KNOW that God is bigger than the office of the president of the United States.

Spots and Polka Dots

Ug. So I finally got rid of this headache I've had since October 15. How do I know it was since October 15? Because that is when I got the flu shot my doctor kept harping at me to get. For four days after that, I had the worst headache and chest pain I've ever had. The next day all is well, until the afternoon when I get the headache back. And so it went every day until this past Wednesday. Then it was so bad I had to go to the doctor. Sinus infection. Second worst headache I've ever had in my life. Doc gave me pain pills and a stong antibiotic. Friday I was in bed all day...Doug had to come home from work at 8 in the morning. I am NEVER in bed all day.

So Saturday my headache is coming and going a little, I finally have some energy to clean up, and I notice little splotches in a circle around my elbows of all things, and down one arm. It's not hives, because it's not very itchy. It does feel almost like a bruise when you touch it. Lovely.

So today, Monday, I went back in to the doctor to find out what was up. I'm thinking shingles, lupus (too much internet...I DID have all the symptoms for lupus except the butterfly rash...just goes to show you can't jump to conclusions!!) So he looks at me and says, "This isn't a typical reaction to antibiotics." I say, "I'm not your typical girl!" So he checks me all out and concludes that this is a serum reaction (serum in something in your blood) similar to vasculitis. I'm like, um HUH? And I'm pretty fluent in medical-ese since I am a professional medical patient!

Then he said it was an immunological response to the antibiotic. That I got. If I didn't have MG, I probably wouldn't have had the reaction. So because the antibiotic will be in my system for at least another 4 days, it might get worse before it gets better; or at least "linger." Nice.

Anywho...on another note....two "firsts" for Jacob tonight, within about 2 minutes of each other. After his bath we were getting our jammies on, and Doug sneezed in the bathroom. Jacob yells, "Bless you Daddy!" Never said that before...it was precious.

Then as he was launching himself off the changing table at me to give me a "big hug" he ripped my trach out. Not so precious.

I knew it would happen eventually. I had just taken it out and cleaned it, and thankfully I caught it so I didn't have to clean it all over again. Just popped it back in....well, mostly : )

Oh the joys of life!!

P.S. I will NEVER get another flu shot as long as I live!!