I Think Cyclosporine Was Made By HMO's

Just like prednisone. Looks good at first. Sounds great at first. May even save your life...and then. The side effects kick in. Right now, the cyclosporine is causing my blood sugar to be RIDICULOUSLY high. Like WAY high. Higher than prednisone unless I'm on 30mgs or more of the Prednisone. I have almost constant cramping in my hands now, my calves are ready to seize up any minute...I've had a headache since I started taking it...I feel like crap. But I can breathe. So is that the trade off? I'm waiting for my neurologist to call. I'm ready to quit taking the stupid stuff, so unless he has a REEEAALLLLLY good reason not to, I'm done.

Some folks won't be happy because they think I give up when things "take work." Well, I'm not going to be in pain 24/7 and go blind from high blood sugar because they think I give up too easily. Let them live like me for one day.

Anywho. He's a funny that I saw a loooooong time ago, and thought it was appropriate for the way I feel right now:


And God populated the earth with broccoli and cauliflower and spinach and green and yellow vegetables of all kinds, so Man and Woman would live long and healthy lives.

And Satan created McDonald's. And McDonald's brought forth the 99-cent double-cheeseburger. And Satan said to Man, "You want fries with that?"

And Man said, "Super size them." And Man gained pounds.

And God created the healthful yogurt, that woman might keep her figure that man found so fair.

And Satan froze the yogurt, and he brought forth chocolate, nuts and brightly colored sprinkle candy to put on the yogurt. And woman gained pounds.

And God said, "Try my crispy fresh salad."

And Satan brought forth creamy dressings, bacon bits, and shredded cheese.

And there was ice cream for dessert. And woman gained pounds.

And God said, "I have sent your heart healthy vegetables and olive oil with which to cook them."

And Satan brought forth chicken-fried steak from Cracker Barrel so big it needed its own platter. And Man gained pounds, and his bad cholesterol went through the roof.

And God brought forth running shoes, and Man resolved to lose those extra pounds.

And Satan brought forth cable TV with remote control so Man would not have to toil to change channels between ESPN and ESPN2. And Man gained pounds.

And God said, "You're running up the score, Devil." And God brought forth the potato, a vegetable naturally low in fat and brimming with nutrition.

And Satan peeled off the healthful skin and sliced the starchy center into chips and deep-fat fried them. And he created sour cream dip also.

And Man clutched his remote control and ate the potato chips swaddled in cholesterol. And Satan saw and said, "It is good."

And Man went into cardiac arrest.

And God sighed, and created quadruple bypass surgery, angioplasties, and stints . . . . .

And Satan created HMOs...

Update On Medicine and Stuff

Well, I have slept for FOUR nights in a row, at least 6 hours. Woot! Woot!

This disease is very puzzling however. My arms are weaker than they have been in YEARS. I still don't really have much stamina or energy. My breathing is much better, which is FANTASTIC, and obviously sleeping helps! : ) My emotional state is MUCH improved, so even though I'm not as strong as I want to be, I'm not like borderline suicidal. Which is always a good thing.

It's just crazy...I don't really know if the cyclosporine is helping, and the side effects are crappy... (charley horses being the worst). So what to do?? Another cool thing is that I haven't have pheresis in almost 6 weeks, and I haven't gotten any worse, so that's awesome.

I have to get blood work done tomorrow morning for the cyclosporine levels, so I guess we'll see then if it's measurable in my blood, and it if IS, if it's worth continuing. Although we've spent so much stinkin' money on it....

I've also just started sneezing my fool head off, and blowing my nose every 2 or 3 minutes. I'm PRAYING it's just a ridiculous allergy attack! Well, I guess that's it for now....we'll see what the blood test says and go from there.

Waiting On The Neurologist

Well, I stopped taking the Cyclosporine last night. I didn't take the PM dose and I feel SO. MUCH. BETTER. Oh my WORD. I felt like I was being poisoned. Doug said I might have to feel that way. I said, Um, Nope. I know my body and I know what's NOT working.

I have to say thank you for all the beautiful comments and e-mails...I love to encourage others, but it's hard to encourage myself sometimes, ya know? You guys gave me so much encouragement....your beautiful words did not fall on deaf ears. I heard them. I felt them. I appreciated them so much... and all of YOU! Thank you.

I am not going to stop taking all my meds, no worries. I did however, as I said, stop taking the cyclosporine, and feel like a different person already. I called the neurologist to find out what the next step will be. Don't know what that's going to be, but I can tell you it's not going to be cyclosporine! : )

Thanks again for being on my team, friends. For being my cheerleaders. My heart is mending!

Never Again To Use Dried Beans

Oh good gracious. I decided to buy dried northern beans instead of the jarred kind for making white chili. NEVER AGAIN!!! Oh my GOSH! I soaked them according to the directions...exactly. THEN, they were in the crockpot for like 5 hours....dinner Monday night: NOT ready. The beans were will still hard as pebbles. Doug scrounges some boxed pasta and frozen meatballs (which trust me, after homemade pasta, is HIDEOUS!).

So after being in the crockpot ALL night, they're still hard, but starting to soften a LITTLE. They cooked ALL day. A total of like 29 hours. Dinner night number 2: BURNED. Doug scrounged something else. Thank God for boxed rice and frozen chicken. AAAHhhhhh!!!!!! I'm never buying dried beans again...except for art projects!

On a completey different note, I heard back from the neurologist, and they want me to double my cyclosporine. I'm a little nervous about that because of the horrible charlie horses I have been having. So, I'm am asking that you please pray that I can double the meds without any further side effects. Yesterday was kind of a bad day for cramping...my arms and hands especially.

THANKS!

My Brother, My Hero

Ug. The love-hate relationship with my computer continues....

My brother was online and I was talking with him on google chat (he lives in California). Internet Explorer stopped working AGAIN, so I got back on and told him my computer was ticking me off. He asked what was happening, and then spent the next TWO HOURS remote controlling my computer getting rid of the viruses and malware. I thought I had anti-virus, but he said it looked like I had NONE. (He's a self-employed computer guru.)

Out of "X" number of files I had 251 infected ones! Sheez. There are still a few issues, but the BIG ones, like all the nasty ads on facebook....are GONE! YAY! And it's much faster. MUCH.

Heard from the neuro's office....my bloodwork is so far so good...there are no signs of kidney problems, Hallelujah! There is actually no measurable level of cyclosporine in my blood yet, and my immune system doesn't show suppression from the cyclo. SO, that either means I'm just going to keep feeling better as more of it gets into my system, OR it's working without further suppression of my immune system, which would be awesome. I'm just waiting to hear back from the neuro on what's next. He'll probably want more bloodwork before changing the dose...that's my thinking.

I also get to decrease my prednisone on Sunday...from 10mgs every day to 10 mg/5 mg every other day. That may not sound like a lot, but it really is. It will help with my blood sugar, moodiness, hunger...which is already starting to abate...FINALLY!!!!

So other than the blizzard warning and expected 18+ inches of snow in the next 24 hours, I'm all good!

A POSITIVE update!!!!

Yes, I am excited. Yes, I use exclamation marks way too much. Deal with it.

Exactly one month ago today, I went to the E.R. and was admitted to Bronson Hospital overnight. I couldn't catch my breath, and it scared me. For the first time I truly realized how hard I had been pushing myself to do all and be all. Well, I wasn't, and I'm not. I never will be.

But I am okay with that now. I think that's been over half the battle. I've had my antidepressants changed, too, which is helping dramatically. Do I still get angry? Of course. Sad? Yup. Frustrated? Most definitely.

I'm almost afraid to hope, if I can be perfectly frank. But glory to God, He made me hopelessly optimstic, and didn't give me a "give-up" gene. He is the Reason I am who and where I am today.

Anyway. Doug has been amazing. The last 2 days we have steadily been working in my office. I've been doing a lot of sitting, going through files, etc., and Doug's done all the hard stuff. We changed out all of the picture frames so they (mostly) match, and everything is off the floor, my deskops are clean....

Now some of you are thinking, "And....???" Well, you didn't see it before. This room was a catch-all. It caught ALL the crap that no one wanted anywhere else in the house. Now it's neat, organized, and labeled! Oh, JOY!!! My OCD brain is SOOOO happy. I am so motivated to do school with Jacob now! I'm sure part of it has to do with feeling better, but before I would walk in this room and just be so overwhelmed....now I LOVE it!

So anywho....now the biggest prayer requests are that I get some help around the house (home health aide) on a regular basis, so that I can use my energy for my family. Secondly, that God would protect my kidneys....between being diabetic and now the cyclosporine (which proceses in the kidneys), I have to have blood work done, starting in 5 days, every two weeks to check my kidney function. It just HAS to stay good.

Thanks to all of you who hang in there with me on this journey. I love you and couldn't do it without you.