I don’t even SLEEP right

I think I failed my sleep study.

All I know is that after I got hooked up to everything, I laid in the bed at the sleep clinic, wide awake.

Then when I finally fell asleep, it was MY normal.

Which is to say that I toss and turn all night.

(I can’t help it. It is what it is.)

And this morning, when the sleep technician lady came in to unhook me from the eleventy billion wires I was attached to, she asked if the bed was uncomfortable… because I was extremely restless.

Of course, I said everything was fine, and that’s just how I sleep.

And she goes, “Huh.”

Which, we can all agree, means, “Woah lady, you have issues.”

I can’t wait to see what the doctor thinks about all of this. Maybe I’ll get to sleep with a mask! Or get super duper sleeping pills! Because we all know I need MORE pills!

Now if you’ll excuse me, I’m going to go have a very UNrestful nap.

DID YOU KNOW….

That sometimes when they run a whole gamut of blood tests on you, that one of the tests is called a DRVVT?

And that DRVVT stands for dilute russell’s viper venom time?

And that this is Russell’s Viper?

source

And from what I understand, which let’s be honest, is not much, is that BASICALLY they want to see if my blood can CLOT after being mixed with the venom.

Which, HA-HA-HA-HA-HA! IT DOESN’T!

Of course, I could be totally wrong about all of that, because, like I said, DON’T KNOW MUCH.

BUT! My thyroid tumor is benign. Amen.

I Have a Plan

At my appointment today, it was confirmed without a doubt, that I do, indeed, have Multiple Sclerosis.

I think it was the fact that I had oligonclonal bands in my cerebral spine fluid (CSF) and not in my blood serum that did it, because everything up to this point, has been probable MS.

But the results from my spinal, plus the images from the MRI’s, along with my medical history, has made it OFFICIAL.

I’ve spent the last few weeks sorting through information. Because of the nature of auto-immune diseases, and because every patient is different, it’s difficult to find the answers to the particular questions that I have had, because I need to understand EXACTLY what is happening in my body.

I need to have the information, and I need to take notes, and then I have to go home, and think about things. Then I have to go to the library, and do some research, and think about more things. Then I have to sleep on it and talk to my doctor again, and think some more.

I’ve decided that the most important thing for me to do right now is to make a personal journal that records all of the minute details. I’ll be starting my medications soon, more on that later, and I need to know HOW I took them, what were my reactions, what my body temp was…  I have to know what I ate, what kind of exercise I did, what symptoms I am currently having, and more. I have to keep record of all of these things, so that I can find what triggers an attack for me.

The first medication I’m going to try is called Rebif.  DadGuy and I have been discussing what days and times I want to do my injections, because it’s something that I have to take three times a week, with at least 48 hours between doses, but could potentially leave me feeling like I have the flu for up to 36 hours. So, do I take it Monday morning, and have a bad Monday and Monday night? Or do I take it Monday night and have a bad Tuesday?  This decision is so dumb, but it comes down to the weekends. Do I want to be sick on Saturday, or not? I’m leaning towards doing injections in the morning, because with all the other limitations I have right now, I just don’t think it’s fair to my family to take the one day that we all have together, and choose to be sick.  I’d much rather not feel well while people are at school and work, so I can lay on the couch pathetically ALONE.

I also get to have a field nurse come to my house and give me proper training on how to administer my injections. Of course, the injections are also going to make me change the times that I take my other medications, because some have to be taken with food, and others have to be taken on an empty stomach. And I don’t want to take the chance of taking any of them too close to one another, because IF the injections make me as sick as they say they will (gets better after a few months) then I don’t want to take the chance of barfing up half of a digested pill.

THE THINGS I THINK ABOUT THESE DAYS.

I almost feel like I’m in body boot camp.

I’m sure that people will tell me that it’s unnecessary, and that I’m taking things a little too seriously, but I want to have a CONTROL group. So between now, and my next MRI, I want to see if I have a pattern. I want to see if certain foods make me worse, or better. I want to see if there is weather I should avoid, or certain exercises that help, or even just what the best time to go to bed is.

SO. That is the plan thus far. Of course, I am still waiting on other diagnostic tests to find out if I have any more fun diseases lying in wait, but until then, this is my decision.

And I feel really, really good about it.

AND: for those of you who like to compare, like I do, or are going through the same thing, I know you’re there and your emails me the world to me, here are some of the latest lab results. (don’t pretend you’re not interested)

Test Name	Result	Limits/Reference
ANA Titer	1:1280	<1:40
IgG, Quant, CSF	13.3	0.0 – 8.6 mg/dL
IgG, Syn Rate, CSF	53.4	-9.9 – +3.3  mg/day
CSF IgG Index	3.4	0.0 – 0.7
IgG/Alb Ratio, CSF	0.89	0.00 – 0.25
Nucleated Cell, CSF	34	0 – 5 cells/uL
Lymps, CSF	97	40 –80  %

Do not get multiple autoimmune diseases. Okay? DON’T DO IT.

I had my lumbar puncture yesterday. It was horrible and awful and I will tell you all about it when I can talk about it without shuddering.

After the procedure, there’s a 20% chance that you will have a spinal headache.

Naturally, I had a headache.

A pounding headache that was helped slightly better by a prescription for vicodin.

Except that I don’t really do well with painkillers in general, and would almost prefer the searing pain to the motion sicknessy, going to throw up RIGHT NOW feeling that hangs at the back of my throat.

Of course, I didn’t have the option to lay in bed and feel sorry for myself because I had yet another appointment with yet another doctor, and I am starting to wish I was either A) a millionaire or B) broke enough to qualify for state health care. This whole “middle class” thing with specialist co-pays is for the birds.

(Please send donations.)

At the appointment this afternoon, I was told the same thing that I’ve been told by everyone else, except that this time, they’re going to run more specialized blood tests. He is thinking that I FOR SURE have UCTD (undifferentiated connective tissue disease), possibly scleroderma, and still also possibly lupus. But we need to run the tests again, because my numbers were so high, that he wants to be sure I didn’t have a false positive.  I mean, pffht, my numbers were only 32 times higher than normal.

OH! I almost forgot! I officially have Raynaud’s Disease too. HOW FUN IS THAT?

And since you would treat lupus and UCTD the same way, I’m having a trial run of steroids starting next week. And if I can tolerate the steroids, then that means, that I’ll do just fine on the real medicine that they use for whatever disease they decide I have next.

Guys: I do NOT recommend having multiple autoimmune diseases.

ALSO: There are going to be DRASTIC changes made to the diets of everyone who lives in my house, because I’m the mom! And I make all the rules! And the food!

Of course, my day was made much better by coming home and discovering ants EVERYWHERE in my house.

And by better, I mean so. much. worse.

Do ants make you feel like a dirty slob of a person, or is that just me?

And do you have a favorite Raw/Vegan/Vegetarian blog that I should be reading?

My Body Hates Me

I went to the doctor today.

I should probably specify what kind of doctor, since I see so many these days.

ANYWAYS.

I saw my NEUROLOGIST today and he said “blah, blah, blah, more tests, blah, blah, blah” and so on and so forth.

GOOD NEWS: I passed my EVOKE potentials test. Which means that while my limbs may be of little use to me these days, I retain my super sonic hearing abilities and my eyeball nerves are still attached.

MORE GOOD NEWS: I don’t have a lesion ON my spinal cord. Just lots on my brain.

NOT SO GOOD NEWS: I have nodules on my thyroid. Luckily, I already have a endocrinologist on deck, and I just get to make yet another appointment so they can poke me with MORE NEEDLES! Unfortunately, I already TAKE synthetic thyroid hormones, which should prevent the growth of thyroid tissue, which means that I will be having a biopsy at the very least, and a minor neck surgery at the very most, because nodules should most definitely not be growing.  I HEART MY LIFE.

NEWS THAT IS SLIGHTLY RELEVANT TO THE ABOVE: Once, in the year 2008, I had 8 surgeries. And I had growths removed from my colon (gross) that were pre-cancerous. I’m prone to think that the nodules in my thyroid will also be pre-cancerous. Of course, I could be totally wrong. WHO KNOWS ANYMORE.

OTHER NEWS THAT IS NEITHER GOOD NOR BAD: I get to have a lumbar puncture on Thursday. And have a 75% chance of giving joint fluid on Friday. I have to bring a “driver” to both appointments.

OTHER OTHER NEWS: My hair has been thinning recently. (Do you like how I don’t want to say it’s falling out? Because I don’t want to say that…. thinning for the win.) Today I have it up in a ponytail, because it’s hot on my neck, and I have a halo of short little hairs sticking all about. Taylor, our miniature stylist, has offered me her hair services. I politely declined, seeing as how she’s four and terrible with scissors.

And that is my *update* of the day.

And yes, I am using my blog as my personal health journal. Because unlike the notepad that I had, my children can’t rip out the pages and make paper airplanes. Lesson of the day: BLOGGING IS PERTINENT TO YOUR HEALTH.