Thursday, October 30, 2008

Well, it's been a pretty rough week. I'm having a lot of health problems as well as coping problems this week. But today was really bad. I missed work, because I was 98% unconscious for about 3 hours during the day. That was after I tried the cervical traction for my nausea. Coming out of the traction is really rough. Since then, the hot and cold flashes have been coming quickly, and dinner is making me nauseated, too. I could try traction again, but I hate coming out of it.

And, I'm supposed to drive home on Thursday nights, but that won't happen. I'll have to wait til tomorrow.

Also, I'm having a pretty rough time coping with everything right now. I feel the same way every day. I feel like this depression has been limiting my life for so long. I have trouble enjoying anything. I just keep trying to get the next day of my life overwith. I dread every single day of my life. And all I want to do is be done with the next day. I don't break down in tears every day, probably because of the mood stabilizers and anti-depressants, but it doesn't change the way I feel day in and day out. When will I be able to actually enjoy the part of my life that I'm currently in....and not just keep waiting for the good times to come. I've been doing that for as long as I can remember. And being sick, and then more sick, and then more sick, only makes it worse. There seems to be no help for me.

Tuesday, October 28, 2008


Well, I heard back from June at TCI. She has been in contact with Dr. Camacho, my new endocrinologist. Dr. Camacho has told June that I have another diagnosis: hyperparathyroidism, which is causing my osteopenia. Of course, I can't find out the details until I see Dr. Camacho, which is scheduled for December 8th. However, I can't wait that long to find out about it, so I've done a little research on my own.

I found this information at

There are four pea-sized parathyroid glands located at the front of your neck. They produce PTH (parathyroid hormone) which helps regulate calcium and phosphorous levels in the body. In hyperparathyroidism, one or more parathyroid glands grows an adenoma, or a benign tumor, causing it to secrete too much PTH. This causes calcium levels in your bones to decrease and in your blood to increase. The cause is unknown. Common complications include osteoporosis and kidney stones.

Symptoms include: bone pain, fatigue, nausea, abdominal pain, and depression.

The treatment for parathyroidism is surgery to remove the offending parathyroid gland. This is recommended in the vast majority of cases, since the condition will only progress without surgery. With surgery, any associated weakening of the bones will be quickly reversed.

So, this is good and bad news. The bad news: It sounds like I will need an additional surgery. The good news: We know the cause of my osteopenia, and the treatment is more of a "quick-fix". This means I may not require 12-18 months of medication before I'd be ready for my cranio-cervical fusion. This also means that a very simple surgery could relieve some of my symptoms right away!!!

However, I obviously haven't talked to a doctor directly about this condition yet. So, I'll need to really be patient until December 8th to talk to Dr. Camacho about it. Because, I only have the general information on the condition, not the specifics of my individual case. So let's not get carried away, yet!

Well, that's all the news I've got for now. Thanks for listening.

Saturday, October 25, 2008

I've written to my TCI nurse

Tonight, I wrote to my nurse at TCI. Here is the email that I sent to her. I'll post again when I hear back.

Hi June,

I'm writing again to report some problems. I was trying to increase the Neptazane, but for three days in a row, I developed strong waves of nausea/chills/fatigue that were quite debilitating. I stopped the Neptazane, because I thought that it was the problem. Unfortunately, these nausea spells are persisting. Today, it was so severe that I was completely unable to move and restricted to bed. I put on my inflatable traction and experienced immediate relief. Thank God. However, it is not lasting relief. And it shows me that the spells were not caused by the Neptazane, but by the persisting cranio-cervical instability. Today, being the worst spell, I also noticed that my heart was pounding really hard, even while lying flat, which normally doesn't happen with my POTS.

I just wanted you to know of my worsening instability symptoms. I will be trying to restart the Neptazane again this week, increasing the dosage a little slower this time.

Also, with regards to the osteopenia treatment, I've seen Dr. Camacho, the head of the Osteoporosis Clinic here at Loyola University in Chicago. She ordered a 24-hour urine test, multiple blood tests, and scheduled a follow-up appointment in December. She has not yet started an treatment on me, because she said she would like to research which one would be safest for me first. She was concerned about prescribing an osteoporosis medication for someone my age (24). So, we'll see what she says at the follow-up appointment in December.

Is my plan still to wait on the fusion revision until I've had 12 months of treatment for osteopenia?

Thank you so much for your continuing help.


Friday, October 24, 2008


Well, it's Friday. Not a busy day. But I still have to find a way to take a shower and drive an hour into town, teach a lesson, and then go to the chiari support meeting. We'll see how many people make it out.

My sister-in-law is really struggling with some medical issues right now, so please keep her in your thoughts and prayers.

I understand that my health could be so much worse, and has been so much worse. I just feel that I'm in between the level where you're able to work (a little), and the level where you're no longer able to work at all. I am just having to push my body harder and harder to keep going to work (or socialize, or do anything normal).

The Neptazane is out. It was likely responsible for my sick state on Sunday, Monday, and Tuesday. I had really strong waves of nausea and complete fatigue. The fatigue has lasted though, even though I discontinued the drug on Monday.

Darvocet gives me the same symptom as Vicodin, which could be called friendliness, or could be called blurting. It sometimes makes me talk about things I wouldn't usually talk about. I've been on meds with this side effect for so long now. So, I'd like to apologize for times I've said inappropriate things in the past. I believe it is caused by my medication. I know this seems really strange and out of the blue, but looking back, I've had my moments, and I hope you can forgive me for them. They will surely continue, as I can't seem to avoid these pills.

Also, I want to write a reminder that I am essentially living a lie. When I'm working or in a social situation, I am usually putting on an act. Not because I don't want to be myself, but because it's not socially appropriate to appear sick and sad all of the time. So, I suck it up and put on a happy face. The only problematic thing about this is that people don't always understand that the outside doesn't match the inside. I am still sick. I am still struggling. If I am at work, at the store, or even out socially, I have gone through a lot to make it there, and I will be doing my best to stay strong and look okay. But that doesn't mean that I am actually okay. And also, if I do have to bail out of something I had scheduled, it usually means that I was not able to make it through the struggle that day.

But I sure do get tired of faking it. I used to essentially live in my bed. I guess that's the option...and it's not a very good one.

Sunday, October 19, 2008

Sunday nights

Sunday nights are so hard for me. I'm always looking forward to the weekend, when I (supposedly) have time to relax and spend time with my boyfriend. However, he has so much to do for grad school that he spends most of his time working, even on the weekends. I respect and admire him for it, but it does make weekends a little more boring.

At least this weekend, it allowed me to get some work done. I've been busy for a couple weeks arranging songs for my students. I finally got all of them done (I hope!).

Unfortunately, when the weekend is over, the work week begins. And the weekdays take such a physical and mental toll on my body. It's almost more than I can handle, and I do end up missing work more often than I should. So, even though I don't hate my work, I certainly dread the amount of effort that goes into a work day. I mean, I didn't even get dressed today. I'm still in my pajamas from last night, and I haven't had a shower yet. This is not out of the ordinary for me. Of course, being paralyzed half the day did complicate things. I laid on the couch and didn't move a muscle for quite a few hours. I was not quite asleep and not quite unconscious, but unable to move an inch. It's very tiring, if you can believe that. I've been extraordinarily tired all day. I had tons of salt and fluids, but it just wasn't enough today...or that wasn't quite the problem. My body was probably trying to make up for the very full and stressful days of the week before.

I have to quit seeing my new therapist, because I don't have time to see her. It takes too much time and energy out of my day to be worth it.

I'm just feeling so depressed most of the time. My bladder problems are getting worse, when they should be better by now, because of the tethered-cord surgery. My joint pain is definitely worse, as my knees were hurting me all day, even though I barely walked all day. My fatigue persists. And my headaches haven't yet changed from the Neptazane, but I've still got to increase the dose quite a bit. I have a migraine most days, and an instability headache often. These are separate from the pressure headache, so they won't be helped by the Neptazane, even if it does work.

I tried the Darvocet for the first time this weekend. I took it Saturday afternoon when my headache was so bad...instability headache. I wore my aspen vista collar too. The pain did get better. But it still had the side effect of making me very talkative. It's really frustrating to have a medication affect your personality so much. It made me more friendly that night, but I wasn't quite myself, and I may have seemed self-centered from talking too much.

So, I'll probably use the Darvocet sometimes, when I need to. I don't know if it's much different from Vicodin, really.

I miss Buttons. The house is very empty without her. I hate spending the morning and making the commute all alone. Hopefully, she'll get to come home with me tomorrow.

Well, I need to take a shower sometime between now and lessons tomorrow. I'm dead tired, but not actually ready to fall asleep. So I'd be a zombie in the shower, and it would take so much effort. But who's to say that tomorrow would be any better?

When to shower??? I just don't have enough energy to be a civilized human being.

I would like to give up and take a break from life. Too bad people are counting on me, most importantly my boyfriend, as we both contribute to the monthly bills. It's just so hard to keep going...but there's no other choice. What a trap.
The biggest stressor this week is that my poor little dog, Buttons, who has become my constant companion, got very sick. Over the weekend, Gus and I went out with some friends. While we were gone, Buttons freaked out and destroyed the house. She vomited everywhere, and also tore up a plastic grocery bag. But apparently, she swallowed quite a bit of that grocery bag. She really doesn't like to be alone. They've considered operating many times this week, but it seems to finally be moving through.

I've been trying out the new medication to reduce cerebro-spinal fluid production, Neptazane. Along with it, I have to take Micro-K, which is a potassium supplement. The Neptazane is going okay. I have to gradually increase to be sure my body can tolerate the higher doses. So, I can't tell if it's helping my headache yet or not. Unfortunately, I've found that my body cannot tolerate the potassium. So, I'll be trying to supplement with potassium in my diet, and hope that it's enough. I'll be getting a blood test in a couple weeks to see if it's enough.

Today, I've been unable to do anything...all day so far. I was stuck on the couch unable to move. I'm gonna do my best to go to the grocery store and do some cooking before the end of the day, but that just may not be possible.

Sunday, October 12, 2008

Just an interesting other abnormality:

Dr. Camacho, endocrinologist

So, this week, I saw Dr. Camacho, the director of the Osteoporosis Clinic at Loyola. She is brilliant and quite interested in my unique situation. She's ordered a lot of tests to be done, and I'll be seeing her for a follow-up in 8 weeks. She will be doing research on treatment of my particular bone density situation. She would like to get in contact with Dr. Bolognese or Dr. Kula, because she isn't sure that a medication for bone density would be safe in someone my age. They haven't been researched very much in young women. Also, she explained to me that our bone density doesn't even peak until age 30, which would mean that my bone density may not be low, but maybe I'm just a bit behind the curve, which would be normal for me, since so many things in my body happen a little later than expected. I even remember having Dr. Grubb explain to me that my life span will be a little stretched out...for some reason I can't recall, which explains why I have always looked so young for my age/developed late, etc.

This weekend is a mix of things. Gus and I had a nice night with friends yesterday, but found out that Buttons can't handle the anxiety of being left alone. She had a horrible night, left our apartment a mess, and hasn't been herself all day. My poor puppy!

Sunday, October 5, 2008

A Boring Weekend

Well, on Friday I saw Dr. Shah, which was good. He's got me set up for regular blood tests to check my metabolic levels while I am on Neptazane. Neptazane is a drug, related to Diamox, which is able to reduce the amount of cerebro-spinal fluid produced in the body. Hypothetically, this will reduce the pressure in my head. It's more commonly used in the treatment of glaucoma, in case you wanted to know. The main concern is the risk of side effects is quite high. The most common side effects is GI problems, like nausea/diarrhea/abdominal pain. I am at high risk for symptoms such is these to any medications. Kidney stones are a not-so-rare side effect. Ringing in ears and tingling are also very common.

I understand that every drug has its side effects. I take at least 15 drugs on a regular basis. However, I am one with multiple chemical sensitivities, so I have a higher chance of having side effects. And this is a drug that is prescribed with caution only in necessary circumstances. To reduce this risk, it is started at a low dose, and gradually increased as tolerated.

Hopefully, my body will tolerate it!

Even more hopefully, it will actually do some good for my exploding head. I've been offered this medication in the past, and have avoided it out of fear. But the pressure has been so bad lately. If this can't help, I'll have to wait for surgery. I really wonder what would happen if I had a spinal tap done right now...if my pressure reading would be high...if it would improve my symptoms. It sounds like a nice idea.

Anyway, I saw Dr. Shah to arrange for blood tests to check my potassium levels. I'll be supplementing potassium as much as I can, since it will be drained from my body by the drug.

Another concern is that Neptazane usually decreases sodium levels. I'm already supplementing sodium with salt pills at least 5 times a day. I wonder if I'll have to increase that to keep my blood pressure up. Neptazane is used to treat fluid retention, which would really work against me in my fight to keep blood pressure up! I take drugs to force my body to retain MORE fluid.

Also, Neptazane is listed as interacting with Lithium, because it drains salt from your body, and Lithium is a salt. So, I will have to probably get my Lithium level checked as well, if I want it to stay within the therapeutic range.

It kinda sounds like an epic battle is happening within my body...many forces all fighting against each other!

Well, you can see why I've put off taking this medication in the past.

I'll be starting Neptazane as soon as my pharmacy delivers it, probably later this week. I hope I'll be able to continue working as my body adjusts to the new medication.

Also, Dr. Shah prescribed Darvocet to treat my chronic pain.

On a different note, I'm currently trying to figure out what to do for my joint pain from EDS. I was hoping to start some kind of physical therapy. Interestingly, I heard from June, my nurse at TCI, and she said that exercising the joints is not what they recommend for EDS joints. The only thing she could recommend is massage therapy of the joints. I'm thinking of trying a local rheumatologist or pain management doctor to at least try something.

Today, I need to get an oil change and do some cooking. I hope I can manage this. I couldn't do anything yesterday, because my body was reacting to the flu shot. I barely moved all day. Maybe today will be more productive. If I could just stop worrying. But every doctor has so far overlooked the contraindication of Neptazane and Lithium. So, it's a good thing I pay attention.