Thursday, August 26, 2010

My Journey: More Symptoms, More Problems, More Pain

Well, I have an update on my current physical condition...and I'm afraid it's not very good.
The past week I've been having trouble....dizziness, bloody noses, and increasing spasms and muscle twinges. It all culminated Tuesday night with one of the worst episodes I've had in months.
The thing is, I now have new symptoms on top of all the other ones, making it worse in some ways.
But here...I'll start at the beginning, with Tuesday.



So, on Tuesday, I had a lovely morning driving my littlest brother to Co-op, going to Latin class, seeing McKenna and giving her a few hugs, and then taking Michael home. We had a fun and sweet late morning and early afternoon together, until he had to go down for bed. It was then that I started feeling really bad. It started with my hands and chest starting to quiver uncontrollably. I sat down on the couch and felt my pulse....it was over 100 bpm and I hadn't done anything. Still. This happened pretty frequently, so I just went about my day. I had a major fight with my dad that evening, ending with me sobbing in my room and slightly depressed. That was perfect. Now I wasn't feeling good physically, or emotionally. At least, I didn't think I was feeling well until about an hour later.

That night, my body's malfunctions hit me....HARD.My "syncope", the circulatory disease, often causes blood to rush to my skin, causes fever like symptoms and increases my risk of bloody noses. Well, I did have the flushing. I did feel miserable. I did have a nose that gushed blood at frequent intervals....AND I had an actual fever of almost 100 degrees. Then the severe pain started. My chest is usually somewhat tight, but the tightness got so bad that it was hard to breath. My body also quivered uncontrollably, and my muscles would make sudden jerking movements. With those symptoms, my pain went from bad to gut wrenching. I can't quite describe it....it's like a knife is being wedged between my ribs and vertebrae, like I'm being crushed, and like I have a scalding flame being dragged across my skin. I'm sad to say that I was curled up on my bed for a few hours, barely able to move except when I gasped in pain. It was so bad, with my emotional strain from the fight earlier and my physical problems, that I cried harder than I have in more than six months. *sigh*

I was awake until about 3:00 or so, as I was in far to much pain and discomfort to sleep. I didn't feel like talking for a while, even though I was offered solace by a number of friends. Eventually Casey caught me at a brief "open" moment, and we talked for a bit. Then Ellie stayed awake talking to me until about 2:00 am, when she had to go to bed. Thank you, both of you! It helped me remember to refocus on God, and not just on my own troubles that would pass in time.

The next morning, I felt bad still. But I had no bloody nose, no fever, and fewer spasms and less pain. Still. I was bed ridden for most of that day. Despite it all, I was a "good day". I had decided it would be, no matter what.
Merry and Casey both called that day and I had nice talks with both of them. Daniel, I'm sorry I didn't pick up the phone the times you called. I was on the phone three of the four times you called, and the other time my phone was on vibrate *cringe* Forgive me?


I do so love you all. It really does mean a lot to me that you would talk to me even when I am in a bad mood or unhappy. *big all-around hug*

Wednesday afternoon my Grandma (from the "Country Herald" =D) came over and played with Michael, talked with my mum, and helped fix dinner - fried potatoes, marinated pork roast, and lots of fruit and veggies. I wasn't hungry though. My spasms and sporadic internal "charlie horses" were most severe in my chest and stomach, which didn't lend itself to a calm tummy. I went to my room after that, trying to get some work done, but not really succeeding. I was still in a bit of a daze.

Then came Thursday....today. I sent my (now) regular good morning text (using www.textem.net) to Ellie, gathered my things, and headed out to a dentist appointment. I haven't been there in almost 3 years. They said it only looked like maybe one year. I take good care of my teeth! There were two downsides to the visit though. My jaw and neck muscles did NOT like all the opening and supporting they were having to do. My jaw still hurts *rolls eyes* Nice side effect, huh? Second, they said I would have to get my wisdom teeth removed sometime between now and next summer. My bottom wisdom teeth seem to be working their way slowly and horizontally into my back molars, which will eventually cause decay and make it so that my molars AND my wisdoms need to be removed. Blech.

Now comes the bad news.
I was happy to see my doctor today. I really needed him to help me. My heart rate hadn't gone below 100 bpm all day, even when resting for long periods of time. Right before leaving for my appointment, I stood up and walked to my room. My heart rate SOARED to 168 bpm. I started feeling dizzy, but I was able to make it to my car. My mum and I were driving different cars to the doctor's as we both had places to go afterwords.

Christy, my main nurse in Dr. Fetter's office, greeted me with a nice big smile. She doesn't ask "How do you feel?". Instead she asks "How are you?" and I can answer "Ok". Despite the dentist, the heart rate symptoms and the doctor's, today had been pretty good! I love my mum and brother. They really can make my day SO much better! So today really was a good day!
I had lost 4 pounds in two weeks which was nice :P But once I started describing everything to Christy, I realized that there definitely was something wrong. I was having more symptoms occur at one time, and for no apparent reason. Christy's brow wrinkled, she placed her chin on her hand, looked at me, and said "You poor dear!". I can agree with that statement completely!

Doctor Fetters came into the exam room. His face grew concerned, especially when I mentioned the bloody noses. I also told him how my basal temperature was 97.8, but my body temperature will jack around, where it will be normal one second, then a few seconds later will be at 99.6, and then a few second after that back to normal (Yes...I do know how to take my own temperature :P). I also had to inform him that my right shoulder pain was not responding to his treatments, and my left shoulder was beginning to get bad as well. He took my blood pressure while lying down, then had me stand up. My blood pressure was low to begin with, but Dr. Fetters closed his eyes and tried to keep a non-worrisome face while he felt my standing blood pressure. My heart rate went significantly up, and my bp went significantly low. I had to sit down before he was completely done because my legs were shaking and I was feeling like I was going to black out.

The doctor's diagnosis? A worrisome complication, sadly. My blood volume is extremely low , meaning every part of my body is oxygen deprived. That lack of blood volume makes my heart beat faster, and makes everything that much worse when my syncope kicks in and sends most of my blood to my skin instead of my heart, brain, and organs. No wonder I feel like I'm going to pass out! We're just hoping it doesn't get so bad that my type II diabetes (lack of water-retention in the cell membranes) and other problems make it necessary to take daily fluid and/or blood infusions. :-\

You should know that my doctor is also a big proponent of non-prescription medications. He doesn't like artificial, lab created chemical, or synthetic fixes. But today he was so worried about my cortisol and Adrenal glands that he prescribed a bio-identical synthetic cortisol. You should have seen his face when he realized that I needed a prescription. Yeah. It was that bad.

He's also scheduling me for a new kind of (rare) neurological test in mid-September. They only test subjects with major neurological and spinal/neck/head pain. They test patient's brain and spinal chords with electroshocks and hi-def ultrasounds. It's rare enough with so few viable candidates that they only have one testing day a month. My doctor is highly recommending it, because he's thinking I may also have some severe swelling in my vertebrae, causing pain, pinching and interference with my spinal nerves. *long sigh* Joy. He says "It doesn't hurt that much... *pause*..." *chuckle* Wonderful.
I also have to go in tomorrow to do a complete fluid workup and three different blood tests. It will be interesting to see how much blood they can get and I can stand with low blood volume and pressure :P

So, there you have it.
My new symptoms.
My new problems.
My new regime of tests and medicines.
Gorsh.
I could really use some good news when I go to the doctor. >_<

Anyway, there you go. I don't have much else to report right now. Hopefully I will tomorrow, what with blood tests, school work, therapy, cleaning, writing, and going swing dancing with Ellie (I won't be dancing at all, mind you. Just sitting and socializing, with good music, and good people. Sounds like fun to me!).
If you have any questions or thoughts on my diseases and problems, please don't hesitate to ask or say something. I'd be happy to answer any and all I get.

I'm praying for you all and hoping that the Lord is opening your eyes to opportunities to minister to people.
I can say that I said extra "Thank yous" and "Have a nice day!" to all the people I met today.
Now I just have to take my physical situation one day at a time.
Perseverance, here I come! God's joy? Don't leave me!
And remember. Don't worry about what happens in this life. God provides. Just pray and let God "worry" about it. He will take care of you in any situation. You just have to trust Him, and that's what I plan on continuing to do.

Be Well!
-Rae

1 comments:

carlinuxlearner said...

You remind me of Job ... praying for you Rachel.

-c@rl

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