Gravity: my nemesis, and distractions

So, yesterday, I lost consciousness twice. I was out of breath quite a bit, even while lying down at times. It was so exhausting. When I came home at the end of the day, I just couldn't get enough oxygen in and collapsed. I was still gasping for breath when I awoke. The traction was the only thing that helped. Unfortunately, traction only helps me for the time I'm in it, which is no more than an hour and half a day, usually once before work/activity, and once after, no more than 45 minutes at a time. The rest of the day, I am not helped at all. So it is not exactly a treatment, and it doesn't make my active life any easier. It just gives me a chance to feel better lying flat on my back for a short time each day. I am thankful for that relief, but it is not an answer.

Also, while I'm in traction, sometimes the weight is right on my titanium rods, which can be really painful, but it is worth it for the relief of other symptoms.

Now that that is all cleared up...I do have physical therapy today. And it will be a challenge, because I am very short of breath today. We'll see how she handles it. I'll be wearing my heart rate monitor, so she can see just how wacky my heart really is. We might get to go in the water, too! That would be great for me, because I know how much easier it is to function without the strong pull of gravity. I wish we all lived in a waterworld. Except for the fact that I can't swim too much anymore, since I'm not supposed to turn my neck. That ruins almost every stroke...I never was a good back-stroker.

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My distraction for the day:
I have a few notes on American Idol to share with anyone interested:

Group 1: I love Danny Gokey. Michael and Alexis are fine. I would have been happier with Jackie Tohn and Anoop Desai.

Group 2: Adam has "mad talent". Allison and Kris are alright. I think Matt Giraud and Mishavonna should have been in there.

Those are my thoughts so far. Anoop and Matt G. are my favorites for the Wild Card show. I really hope they come back. Jackie and Mishavonna would be nice, too.

Thanks for listening to my unrelated and unimportant thoughts.

Provigil, Pronex, PT, and POTS

I started the Provigil on Saturday. It is supposed to fight fatigue and help you stay awake. For me, it seems to cause me to be really really hyper and restless and talkative. It's the same reaction that most people would get with WAY too much caffeine. It's actually very similar to a manic state. It's hard for me to be on...it's very tiring. And it's pretty tiring for the people around me, too. (Sorry to Gus and Chris and Rachel.) I kinda wish it were possible to take an even smaller dose. My system is just so sensitive to stimulants (Picture me after one can of coke....I'm bouncing off the walls.) So, after it wore off, I completely crashed and every cell in my body hurt. I couldn't move for a solid 14 hours. So, I still wonder if they prescribe any smaller dose that I could try. Otherwise, I don't know how this would work on a regular basis. A lot of people have said that I just need to get used to the medication. But I am not anxious to jump into that manic state again.

I just got my very own Pronex traction unit, which I love! In the past, I haven't been able to afford it, because my insurance company considers it an "experimental" treatment. So, I was lucky enough to buy one from a friend who no longer needs hers. I love it so much, that I could see getting addicted to it. It provides temporary symptom relief, since it simulates fusion position by extracting the head further from my spine.

I'm not so sure about how much I should be wearing my aspen collar right now, because it seems to keep my neck in an unnatural position, and I think it actually causes muscle spasms! So I have to figure out what to do about that. I think I should stop wearing it for a while.

I am in physical therapy now. My PT is Anna. I had to explain chiari, EDS, and POTS to her, but she is willing to try to help me out. She's just said that she doesn't know how much she'll be able to help me. Maybe the water really will be the best place for me. We'll see.

I'm still having trouble catching my breath. It is a sign of my POTS becoming very severe. My mom called the POTS office, but they called back with worthless information about continuing my Provigil for a full month before I complain. But Provigil does NOT help treat symptoms of tachycardia or shortness of breath...only fatigue. I wish I could just talk to someone directly instead of leaving messages back and forth. I'm really disappointed in them right now. Hope for some more help to come from them, soon.

Out of Breath...

This is so exhausting. For about 3 weeks now, my heart has been pounding extra hard and fast throughout the day. In addition, I've been really out of breath. I just can't catch my breath. It gets worse whenever I have to sit up, stand, move around, or strain. It makes sense that the original names of POTS were "Irritable Heart Syndrome" and "The Effort Syndrome". Because my heart is over-reacting to everything I do, and I get out of breath with even a little bit of effort.

These are common POTS symptoms. I just haven't had them this severe before. We called Dr. Grubb's office today about this worsening of symptoms. Who knows when we'll hear back, or what they'll have to say. I know there are more intensive treatments, but I don't know if I'm really a candidate for them.

Thoughts...

I hate that my chronic illnesses make my life so self-centered. So much of my energy goes into how I feel and what I need to do to get better. I wish I could spend more of my time and energy on the people I love and how they feel and what they care about. I wish I could be a better person for them. One day, I will.

That leads to another problem. "One day..." I never live in the "now". I spend my whole life trying to make myself better...looking forward to better days...to times when it won't be so hard. I keep waiting for the time when all of this will be over with! When no one will want to cut my head open. When I can be more functional, more useful, less despondent. Even with my relationship, I'm just waiting for the time when grad school will be over, and I'll be able to spend more time with Gus. How can I learn to be satisfied with what I have right now? Especially, when right now is often so miserable, such a struggle, and filled with so much pain?

Always a work in progress...

Getting harder

Life is so hard sometimes. Lately, I've had to use my wheelchair more and more. I'm having a lot of trouble catching my breath. Most days, just sitting up is enough to make me feeling like I've been doing jumping jacks for hours. Also, the last 2 days, I've developed a horrible headache that can't be relieved. The only thing that helps is traction, sometimes. The only problem is that my inflatable traction also seems to block off the flow of CSF through my craniectomy region since it inflates all the way around. I know I'm supposed to have a Pronex traction, but we couldn't afford it. ($800). It might provide more relief, though.

Also, I got my DEXA scan results back. These are still considered preliminary results, since the scan was done within the first month of treatment. This scan found that I have moderate osteopenia, with T-scores of -1.8 and -1.3. So, I just have to hope that by my next DEXA, I can show significant improvement. Eating food would probably help with that. I've heard that protein can be helpful, in addition to vitamin D and calcium. So, I'll try to increase my protein, since I don't get much right now.

That's where I'm at right now. Headaches, fatigue, and trying to catch my breath all day.

A Missed Day

I couldn't work today. I couldn't catch my breath and my heart was racing whenever I was upright. The headache, nausea, and knee pain were bad, too. So even though I really need the work, I wasn't able to drive to the different houses for lessons, so I had to stay home. Really, my whole body was rebelling. It just did not want to be upright. So, that sucks. I don't know how I can maintain this schedule. I can only hope that next Tuesday is better. I don't want to lose those students!

So, another complication is that I'm home alone tonight. My plan to avoid a psychological meltdown is distraction. I just finished watching Juno, which is a really fun movie. Now, prime time shows are on, so I'm sure I'll find something. If only Subway delivered, then I could eat dinner! But I'm fine. There are snacks here. I just can't stand around very long getting them.

So, it's a rough night, but could be worse.

Catching up

Okay. So, I finally got a wireless connection set up here at my mom's house. Since I'm here 5 days a week, it seems like something I should have, so I can use my laptop. So finally, here I am on my laptop at mom's house.

Here's some correspondence between June and me, which explains where I'm at:

Hi June,

I just wanted to write to you about a couple of things. For one, I wanted to be sure that my doctor's office has faxed blood test results over to you, including my Potassium levels.

Also, I wanted you to know that I've had a definite downturn in my symptoms of instability this week. I haven't been able to work or drive. I've woken up during the night with horrible instability headaches. But mostly, it's my POTS symptoms during the day. I have been so short of breath that I can't even speak a sentence without catching my breath. My heart has been pounding. I've been very dizzy, and restricted mostly to bed. I can't afford to quit my job right now, so I will just keep struggling through. I just wanted you to know where I'm at. The traction helps to some extent. But mostly I need to stay in a horizontal position to keep symptoms at bay.

Basically, I can't wait for my re-fusion surgery. I'm taking my 50,000 units of Vitamin D and extra doses of calcium, so hopefully my bone density will be improved enough by this summer to operate. Is there a certain bone density the doctors are looking for before they do the surgery? I had one DEXA scan done last month, and my next one will be scheduled for late April or early May. I just pray that my bones are strong enough by then to re-operate, because my level of functioning is decreasing again. Thanks so much for your continued support.

Carolyn Richardson
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Hi Carolyn,
I have not received recent blood works. The older ones were normal, if I remember correctly.
Fax me the last DEXA. There is no specific number that the doctors are looking for but if there is improvement after a few months of treatment and if the specific bone is strong enough, they might go ahead with the fusion with more treatment after the surgery.
So send me the last result and I'll forward it to Dr. B for his response.

Take care,
June
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So that's great news. I just need to go about getting these test results over to June. I called Loyola, and after much negotiation, they decided they could fax me the test results (But seriously, who has a fax machine???). And clearly, the blood test results I called to get faxed over never did get sent. Great. How come nothing gets done unless you do it yourself? And then why do we always have to use a freaking fax machine?!!!!

Oh well. I have to go to the psychiatrist now. I'll write later, if I survive the day.
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Okay....So it's later. I just wanted to add that while I know that I need this huge reconstructive surgery inside my skull and spine, I am scared to death to have it done. To go through that torture again seems like the worst idea I've ever heard of. If it weren't for the promise of that sweet spot and the debilitating and progressive nature of symptoms, I wouldn't consider it. I mean, it is a crazy operation. It's the craziest thing you could ever imagine. This surgery is absolutely nuts. You'd have to be insane to go back and have the surgery redone. Especially when some people having this surgery don't seem to be getting better...or they get better and then worse again (isn't that always the way?). However, I have felt in invasive traction what my body can feel like. Then when they took the weights off, it felt like the weight of the world was crushing me and the feeling of sickness returned to my whole body. So, I know that if this surgery is done exactly right, and they find the sweet spot for my skull, then I will have that light, feeling of relief for all time.

Therefore, I will do anything to get that feeling back. Even have the most insanely ridiculous invasive surgery one can ever have done. Whatever it takes to get my life back. How could I not take that chance, knowing that my quality of life and level of disability for the rest of my life depends on it?