Back in junior year of high school, I had my first big episode that sent me to the hospital that we would later realize was part of the Fibromyalgia. What I really remember about the day was that by the time mom called me to see how I was doing (as I had stayed home that day sick from school), I was crying because the pain in my stomach and legs were so bad. Mom rushed me to the hospital because she could tell by looking at me that I was going into shock.
Well, I was opening up my my writing I am doing for this pregnancy and I stumbled upon a writing I did the day after this originally happened and I thought I would share it.
I really don't remember half of this.
"April 23, 2003
Title: I got to see a hospital last night...
I started getting a stomach ache yesterday that was really bad, so Instayed home from school. By about noon, I had started crying because the pain in my stomach was so bad and had traveled to my legs. My mom found me crying in about an hour or so, since I hadn't stopped and rushed me to the hospital.
I had been having heat spells, the pain in the legs, stomach, and chest, my arms were weak, I couldn't walk, I couldn't keep anything in my body. I was also having trouble seeing and my hearing began to start to leave me at the hospital. My mom said that she saw my face get really flushed as I walked through the hospital during tests, and a whelt(sp?) appeared on my head for no reason and went away a few moments later.
She had to get me a wheelchair to get to the room in the hospital. The thing that freaked out my mom the most was the fact that I was going into shock because of the pain. I wouldn't stop shaking and I became very quiet. My mind seemed to go off into another place, almost as if I felt I was dying.
They finally stuck and IV in me, gave me a shot, and got things ready for me to leave. It was a virus, no name since they don't tend to classify viruses much because there are so many types and not much to do with them. But I have to take medicine for the pain, rest a lot, and miss school.
I was so scared, even though it turned out to be not that life threatening. The worse part was the shock, and I didn't even notice it until my mom pointed it out. That and I got really dehydrated, because I only ate breakfast around 6 and then had a glass of water, and that was it. They wouldn't let me eat or drink anything at the hospital because they were afraid that I would throw up if I had to go into surgery. But the IV helped get my body back halfway normal.
I'm feeling better today. My stomach still hurts, and my head is pounding. I still get a few of the heat flashes and my eyesight is horrible, but the Ibuprofen is helping with the pain in the legs, and I'm able to rest and do things, and eat."
Tuesday, April 15, 2014
Monday, April 14, 2014
I want a redo
I think I've slept all of 45 minutes in the last 24 hours... Today marks the first day of absolutely no Lyrica and it's feeling really discouraging. Massive itching, horrible nausea (I was worried I was going to throw up in the bath earlier), insomnia worse than normal, and now the shuddering has finally set in. Part of me just wants this pregnancy to start just so I can be that much closer to getting my Lyrica back.
If it doesn't ease up at all, I'm going to have to seriously consider going back on a low dose in the second trimester, and completely giving up breast feeding.
It times like these that I really truly feel like a drug addict... :/
If it doesn't ease up at all, I'm going to have to seriously consider going back on a low dose in the second trimester, and completely giving up breast feeding.
It times like these that I really truly feel like a drug addict... :/
Monday, April 7, 2014
The true test of an introvert
I've noticed something else weird in going off the medication, mostly because I never noticed it before now. Now one of the big issues aside from pain with Fibromyalgia is the issue of energy. People with Fibro have much worse fatigue issues than normal people, and it's harder to explain to people who don't have it because they don't quite understand how bad the fatigue gets. I've had days where I have just sat under the stream of water in the shower sobbing because I don't even have the energy to lift my arms to wash my hair, but I can't fall asleep.
I already knew this was a problem going into it. What I didn't realize was just how much I needed that energy for normal socialization.
I have lived with Social Anxiety Disorder (henceforth to be called SAD in this post) all my life, to the point that I would pass out in middle school from being too overwhelmed (I have to wonder if that wasn't some of the tachycardia as well...)
The last couple of weeks I've been more overwhelmed by the fact that I'm really not good at small talk and never know what to say to people. And a great part of that has to do with energy now. People come up to me to talk and I find I have a harder time finding the energy to sort through my thoughts to even come up with something to say.
We had a social game at the Timebank potluck on Friday where we had to go up and introduce ourselves and when one of the ladies came up to me and told me a little bit about herself and what she can offer, I found myself stopping and thinking, "what is special enough about me to respond with?" and I ended up not saying much at all about myself. I have to wonder if I came off as rude at all.
That's one thing that pisses me off more than anything about SAD. Sometimes we come off as cold, arrogant, or rude when really we are just scared to death. I remember in middle school I went to a birthday party of my friend's at a roller rink. All of her friends were asking me questions and wanting to get to know me but I was petrified and all I could do was try and release myself from the situation by running away. I then spent the rest of the time being teased and tormented by these girls for being so "rude" to them.
:/
I told Abby at the potluck that I was having a hard time because I had suddenly hit a wall with my energy. I didn't go as far as explaining why it was so frustrating to hit that wall; not because it just sucks to have no energy, but because it was so much harder to be social.
What's funny is that despite my SAD and being an introvert, I'm actually quite upbeat and social when I'm around people that know me well and know my quirky ways. I like being with people, I like being silly, and I like joking a lot. I think I got a lot of that from daddy, because he also has a lot of fun teasing and being funny with people despite him being a total introvert. And well, he did marry my mom, one of the most extroverted people I know (besides my brother), so we both must have some fun when around those people (and we do).
The whole thing really is a great big pain in the ass.
I already knew this was a problem going into it. What I didn't realize was just how much I needed that energy for normal socialization.
I have lived with Social Anxiety Disorder (henceforth to be called SAD in this post) all my life, to the point that I would pass out in middle school from being too overwhelmed (I have to wonder if that wasn't some of the tachycardia as well...)
The last couple of weeks I've been more overwhelmed by the fact that I'm really not good at small talk and never know what to say to people. And a great part of that has to do with energy now. People come up to me to talk and I find I have a harder time finding the energy to sort through my thoughts to even come up with something to say.
We had a social game at the Timebank potluck on Friday where we had to go up and introduce ourselves and when one of the ladies came up to me and told me a little bit about herself and what she can offer, I found myself stopping and thinking, "what is special enough about me to respond with?" and I ended up not saying much at all about myself. I have to wonder if I came off as rude at all.
That's one thing that pisses me off more than anything about SAD. Sometimes we come off as cold, arrogant, or rude when really we are just scared to death. I remember in middle school I went to a birthday party of my friend's at a roller rink. All of her friends were asking me questions and wanting to get to know me but I was petrified and all I could do was try and release myself from the situation by running away. I then spent the rest of the time being teased and tormented by these girls for being so "rude" to them.
:/
I told Abby at the potluck that I was having a hard time because I had suddenly hit a wall with my energy. I didn't go as far as explaining why it was so frustrating to hit that wall; not because it just sucks to have no energy, but because it was so much harder to be social.
What's funny is that despite my SAD and being an introvert, I'm actually quite upbeat and social when I'm around people that know me well and know my quirky ways. I like being with people, I like being silly, and I like joking a lot. I think I got a lot of that from daddy, because he also has a lot of fun teasing and being funny with people despite him being a total introvert. And well, he did marry my mom, one of the most extroverted people I know (besides my brother), so we both must have some fun when around those people (and we do).
The whole thing really is a great big pain in the ass.
A raging heart
I really need to get back in with a cardiologist. Going off the steroid that is meant to keep sodium stored in me longer has me seeing not only a lot more dizziness, but also a lot of palpitations and while I know it's probably fine, it freaks the crap out of me. It's scary to be laying there in bed and feel your heart pounding in your ears as if you had just finished running a long distance.
I've heard you aren't supposed to be able to feel your heart beat like that until your heart rate is around 130bpm.... that's usually my resting heart rate.
I don't think I'd be quite so jumpy if it weren't for the ICU when the nurses were so freaked out by my heart rate going crazy every time I would shift around in the bed. I wasn't even allowed to brush my teeth because it sent my heart rate into the 160s.
Wednesday, March 26, 2014
The Halfway Mark
Now that I'm down to 300mg of Lyrica, which is half of what I have been on for years now, I think it's time to take stock and look at what is happening to my body. I am also completely off the Ativan and the Fludrocortisone (which is a steroid used to keep sodium in the body).
Ativan Effects
-Anxiety much more often and stronger
-Had my first big *panic* attack in a long while (I have plenty of anxiety attacks, but no attacks where I feel like I can't breathe. That has changed.)
-More anxiety attacks from nowhere popping up.
Fludrocortisone Effects:
-More dizziness
-Had a moment where I was having issues with starting to pass out.
And now the big one...
Lyrica Effects:
-Bad nausea in the morning (which is where I've stopped taking the Lyrica completely)
-Neck pain is really bad.
-Having more trouble sleeping (mostly with initially falling asleep).
-More muscle aches all over body. It's really bad when I first wake up.
-Screw body temperature regulation. My body doesn't seem to know what the hell to do with me. Hot, cold, hot, cold, burning, freezing.
-Joints are pretty bad too. Just standing to do makeup was hard on my left knee. :/
-My energy has gone down significantly and it's a chore to get myself moving to do anything, including feeding myself.
-Oh and this damn brain fog. I'll forget what I'm doing within a few minutes and then later realize I didn't even do half of what I need to because I got off track.
Add onto this period cramps, and yeah... I'm just peachy.
At the very least, I guess this did manage to prove I'm not crazy. For a while there I was beginning to get overwhelmed by the constant barrage of how I'll probably feel a lot better being off the meds, and it might not even be symptoms of Fibroymalgia but something much simpler.
So I'm at least a little vindicated.
Though, I will say, I know most of this was said with good intentions and meaning to be supportive and helpful. I just think sometimes people don't really know how to be supportive about it, and they think this is helpful when it usually isn't.
Ativan Effects
-Anxiety much more often and stronger
-Had my first big *panic* attack in a long while (I have plenty of anxiety attacks, but no attacks where I feel like I can't breathe. That has changed.)
-More anxiety attacks from nowhere popping up.
Fludrocortisone Effects:
-More dizziness
-Had a moment where I was having issues with starting to pass out.
And now the big one...
Lyrica Effects:
-Bad nausea in the morning (which is where I've stopped taking the Lyrica completely)
-Neck pain is really bad.
-Having more trouble sleeping (mostly with initially falling asleep).
-More muscle aches all over body. It's really bad when I first wake up.
-Screw body temperature regulation. My body doesn't seem to know what the hell to do with me. Hot, cold, hot, cold, burning, freezing.
-Joints are pretty bad too. Just standing to do makeup was hard on my left knee. :/
-My energy has gone down significantly and it's a chore to get myself moving to do anything, including feeding myself.
-Oh and this damn brain fog. I'll forget what I'm doing within a few minutes and then later realize I didn't even do half of what I need to because I got off track.
Add onto this period cramps, and yeah... I'm just peachy.
At the very least, I guess this did manage to prove I'm not crazy. For a while there I was beginning to get overwhelmed by the constant barrage of how I'll probably feel a lot better being off the meds, and it might not even be symptoms of Fibroymalgia but something much simpler.
So I'm at least a little vindicated.
Though, I will say, I know most of this was said with good intentions and meaning to be supportive and helpful. I just think sometimes people don't really know how to be supportive about it, and they think this is helpful when it usually isn't.
Wednesday, March 5, 2014
Plan B Formulating...
You should always expect there to be hiccups along the road. So it would seem we've hit the first of our little snags.
One being that my doctor (the rheumatologist) can't do math. Mom said she's met a lot of doctors who can't do math. It doesn't make them a bad doctor, just a bad script writer. So I had to call up to Cleveland Clinic to try and sort it out and get a new prescription because if I use his, then I'll run out of Lyrica completely within a week and a half, and I'm left SOL.
They said yesterday they would get it taken care of and called in to CVS, so we'll see in about a half hour if they succeeded.
The second is these damn migraines. I finally came to the conclusion what I should have done from the beginning: save the migraine medications for last. Go off of everything else, and then go off those, because then it's a much shorter amount of time I might have to deal with the constant headaches.
Oh fertility goddesses, please give me your blessing that in pregnancy I will have no migraines. After everything else I have gone through, that small kindness will be much appreciated. So mote it be.
One being that my doctor (the rheumatologist) can't do math. Mom said she's met a lot of doctors who can't do math. It doesn't make them a bad doctor, just a bad script writer. So I had to call up to Cleveland Clinic to try and sort it out and get a new prescription because if I use his, then I'll run out of Lyrica completely within a week and a half, and I'm left SOL.
They said yesterday they would get it taken care of and called in to CVS, so we'll see in about a half hour if they succeeded.
The second is these damn migraines. I finally came to the conclusion what I should have done from the beginning: save the migraine medications for last. Go off of everything else, and then go off those, because then it's a much shorter amount of time I might have to deal with the constant headaches.
Oh fertility goddesses, please give me your blessing that in pregnancy I will have no migraines. After everything else I have gone through, that small kindness will be much appreciated. So mote it be.
Monday, March 3, 2014
Ice and Fire
I've run into a bit of a conundrum. In going off of the Ultram, the cramps in my legs and arms have been horrible. In going off a couple of the things needed to help my migraines, I've been having them almost nonstop. So I of course have to start thinking about what will help.
Ice. Ice is great for the migraines. Not so great for the rest of my body. It makes the cramps worse, and I can't regulate my body temperature very well anymore so my whole body gets cold. My feet and hands are unbearable when I have the ice on my body.
And then there is heat. Heat is great for my body. It eases out the cramps, lets my body relax. Sure I get flushed and then need to rest afterward, and to be careful to not pass out. But it's worth it.
Buuuuut... it's horrible for the migraines.
I now have to plan how I do all of this very carefully, and many times I'm left sitting there thinking about how unfair it is, because really, what other methods have been left to my disposal that I can do for myself?
I guess the question really comes down to which pain can I live with better? I just hate that I have to choose.
Ice. Ice is great for the migraines. Not so great for the rest of my body. It makes the cramps worse, and I can't regulate my body temperature very well anymore so my whole body gets cold. My feet and hands are unbearable when I have the ice on my body.
And then there is heat. Heat is great for my body. It eases out the cramps, lets my body relax. Sure I get flushed and then need to rest afterward, and to be careful to not pass out. But it's worth it.
Buuuuut... it's horrible for the migraines.
I now have to plan how I do all of this very carefully, and many times I'm left sitting there thinking about how unfair it is, because really, what other methods have been left to my disposal that I can do for myself?
I guess the question really comes down to which pain can I live with better? I just hate that I have to choose.
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