Monday, October 26, 2009


Because it is not the FDA approved use of the medicine, I cannot say which doctor I saw today. He/she would like his/her identity protected. I was told this was an exception that was made.

Anyway, the doctor I saw today said that my urine Calcium done last May was low, so I will up my Calcium dose. However, since there may be something else causing this (like EDS-related absorption problems), the doctor finally agreed to prescribe Forteo!!!!! Forteo is a daily injection that you do yourself. It is the only medication proven to regrow bone. I have been prescribed a 6 month course. (The usual is 2 years.) This doctor has agreed that after 4 months of treatment, my bones should be showing improvement. So my DEXA has been pushed back to February 22, 2010.

Is this a good thing? In general, YES. I've been waiting for this medication for so long. And now I have it. Problem: Why did I have to wait so freaking long to get it? Another problem: This means that surgery is at least postponed another couple of months. I can't expect to have surgery before March at this point.

The medication itself seems pretty easy. It's made into a Pen. The medication has to be refrigerated. The pen measure the dose for you. You just insert the needle in an area that has at least 1 inch of fat (which is, evidently, my entire body!), and inject the medicine. The needle is so tiny, you really don't feel it going in! I mean it! I was a little disappointed. You know how much I love needles and blood! (Seriously, I love needles. Not sarcasm.) I took my first dose this afternoon, and fell into a very deep sleep. So I will be taking it at bedtime from now on. Another common side effect is dizziness, but I haven't noticed that. Other symptoms to look out for are muscle cramps and growing pains in the bones. So far, I think it's a great sedative for nighttime. No real complaints as of yet.

I just really wish I could have gotten this prescribed sooner, so I could be scheduling surgery for immediately after the holiday season. At least now, I can be sure that my DEXA test results will definitely improve next time, so I will be approved for surgery in the spring.

My main concern: I was expecting surgery in early January, so I didn't feel so bad stopping work 2 months before then. However, if I have 5 months to wait until surgery, I cannot be completely without income during that time. But how do you tell your piano students that you would like to try teaching for a few more months? I don't want them to think I'm messing around. I just need to make my life as useful as I can.

This doctor finally agreed to prescribe this medication, because my condition is finally pathetic enough to warrant drastic treatment (haha, like this medication is so drastic!) The thing is, my condition has been steadily worsening for a long time now. All information told me that this would happen. Why do the doctors have to WAIT until you hit rock bottom? Why won't they take you seriously until your condition is truly desperate? And why does New York insist on me becoming essentially bedridden before they'll perform surgery? We know I need the surgery. I am prepared for the challenges of recovery. But they're making me wait and wait and wait before they will do it.

Perhaps, I will write to my nurse at The Chiari Institute, and inform her that I have started Forteo. I can also inform her of how desperate my situation is. Maybe there could be some kind of lenience.

For tonight, I have a migraine that is reaching an 8, 8.5, so I will try to go to sleep. Of course, I wish I could exercise so I wouldn't have such a high body fat percentage. I hate being too sick to exercise. It drives me crazy. I'm one of those weirdos that actually enjoys going to the gym. It makes me feel good. (Not during, but after...I do have POTS, after all=exercise intolerance.) But I do miss getting a good workout and being proud to be able to keep my body healthy that way. I burn very few calories laying around all day. But my body doesn't want to allow me to be upright at all. Ahh...approaching a 9 on the pain scale. I guess I'll try to sleep.

Sunday, October 25, 2009


Lots of pain. Very few coherent thoughts. So tired.

I hope to schedule the bone scan for some day this week, to keep things moving. I expect that the bone scan will reflect the improved blood numbers, by showing much denser bones. This will get me approved for surgery a.s.a.p. I'm feeling as optimistic as I can about this. I'll post as soon as I get results.

Saturday, October 24, 2009

The Higher You Fly, the Harder You Fall

If your body is telling you that you should stay in bed and do nothing, and you choose not to listen...If you take stimulants to make you seem awake and opioids to mask the will always, always pay. I've used stimulants and opioids to try to defy my body for too long. And the costs are too great. There is always a downfall. Always some level of withdrawal. And your body keeps track of what you stole from it. You will always pay for every minute of borrowed time. You will pay with pain, fatigue, and distress. I wonder if I will ever catch up, if I will ever make up for the time I stole. For so long, I've tricked my body into doing things it wasn't able to do. And now it has shut down. And it tortures me with pain and sickness. I don't know how I'll survive sometimes.

Get me to a freaking neurosurgeon. Cut me open. Rip out my titanium. Give me new rods. Make me new. I don't care what it takes. I don't care how much it hurts to get there. I can't live like this anymore. Just make this end. How will it ever end? I don't know how to go on like this.

Tuesday, October 20, 2009

Drop attack tonight. Fell on my left side on the hardwood. So far, I'm very comfortable in my decision to stop working. I would have called in sick every day this week.

Vertigo has been very bad. My temples feel quite swollen, as well. Full of pressure. I wonder if my pressure is up.

Post from last night

I wrote this last night, when I didn't have access to the internet:

I’ve been having quite a difficult time lately. However, I consider myself the luckiest girl in the world. This weekend, my boyfriend of 3 1/2 years and friend of 7 years became my fiance. Gustavo actually wants to be with me the rest of my life, in sickness and in health. Many of you know the kind of commitment that is with someone like me. I have been very blessed to be in love with my best friend. It makes all of this pain and sickness seem a bit more bearable, when you know you won’t have to do it all alone.
Of course, now that I have had to discontinue all of my work, I do spend a lot of time alone. Today, I officially quit teaching piano lessons, at least for a while. I have several very loyal families that are willing to wait for my health to improve. In the meantime, I am left spending much of the day alone in the house, because most people work all day. It’s amazing how much time there is to deal with when you can’t work at all. Most of that time is spent being tortured. My own body tortures me all day. My pain level has been very high. I’ve been very symptomatic, with my autonomic symptoms, nausea, and vertigo all worsening and happening more frequently. I’ve had a lot of pain in my head, including severe facial pain. I’ve also had pain in my spine, feeling like it’s being crushed like an accordion. I also have a constant feeling of a lump in my throat, causing frequent gagging. It's impossible to sit up at times. The only escape is laying flat almost all of the day.
I will be seeing my endocrinologist, on Monday, October 26th. I expect her to order a new DEXA bone scan to determine the effectiveness of my first year of osteopenia treatment. Hopefully, my bones will have improved sufficiently (with only Vitamin D, Calcium, and Magnesium treatment). I will send the results to Dr. Bolognese, my neurosurgeon in New York. I will also certainly be sending him a pleading letter, describing the worsening of my symptoms. The hope is that he will be willing to schedule a surgical revision to my cranio-cervical fusion in the very near future. I will probably have to wait a couple months, however, because my mom will be getting married at the end of November! And I don’t want to interfere with the wedding and honeymoon plans. My health (or lack thereof) tends to interfere with everything. But I’ll do my best to keep being patient. The situation is just becoming rather desperate. I sometimes wonder just how many more days I can stand this. It’s just been so long. I just don’t want to lose more years of my life to this. I need help, now.
I am frustrated that I can’t post this entry while typing it, because my current laptop has difficulty with wireless internet reception. So it doesn’t seem to work on the top level of the house, where my bedroom is. Being connected to the internet during the day would probably help me to feel less isolated alone on my bed 24 hours a day. I wish someone could help me (a lot of good wishing does).

Saturday, October 17, 2009

Symptom Categories

The ice-pick in the eye pain went away. YAY!!! So I haven't needed too much pain medicine today. However, my body was still very sick today.

I'm going to write a description of the different types of complaints I have:

If I say that I have pain:
-Pain in the head/eyes/temples/jaw
-Skin hurts to the touch
-Joint pain all over
-Muscle aches
-Aches in torso

If I say that I am sick:
-Like having the flu
-Achy all over

Low BP/Heart/Breathing/Oxygen
-I have low blood pressure, making me feel tired and weak
-Zoning out/brain fog
-Pounding heart
-Shortness of breath (oxygen is not being transported efficiently)

Torture headache
-Beyond my usual headache
-Pain level at 8-10
-Usually the feeling of ice picks over one or both eyes

Just so you know what I'm talking about.

Wednesday, October 14, 2009

Learning to accept even less from myself

Well, it's been difficult. (This won't be very articulate, because I'm in a brain fog, but need to write.)

I'm back to being almost completely bedbound. I just reached that point...the point where I just know I can't hold on any longer. Something needed to change just to ensure my survival. I had reached the point where I would smile for others, and then scream and sob as soon as I got to my car. I have reached the point where the time between lessons is no longer enough to get me through the lessons themselves. I'm very uncertain how much longer I will be able to work at all. I planned on going two more months, but I need to bow out early. I've canceled all piano lessons at the church. So no more daily drive to work. But even with lessons at the house, I don't think I'll be able to do this. It's simply a matter of acceptance. But it's also a challenge for those closest to me. To accept that I am falling back down. That I'm back to that place where I need to be taken care of. That's a challenge for anyone to accept, certainly a 25-year old woman that has had glimpses of independence and adult life.

So, the following symptoms are the reason that I am again restricted to bed about 23 hours a day:
Nausea, worsened to the point that I'm eating very little
Vertigo has returned, especially when I don't wear a collar or traction
Orthostatic intolerance: tachycardia and dizziness
Weakness: each limb seems to weigh an extra 20 lbs., more at times
Intense head pain: the ice picks over my eyes are back! And my temples seem to be permanently swollen
Cognitive deficits:
-brain fog (feeling really out of it)
-concentration/focus is a challenge
-difficulty talking or writing with any other sensory stimulation

These symptoms are only relieved by laying flat or with traction. Unfortunately, my traction options both have some pretty major flaws. (one blocks the hole in the back of my skull, squishes my ears, and hurts my jaw; the other pushes so hard into my rods that it creates a whole new kind of headache) Even the padding in my collar under the chin is thinned out so much that it's becoming uncomfortable. I use Kleenex for padding, but I think I need something more.

Anyway. As soon as I think I'm at a healthy level of acceptance of my limitations and my lifestyle, it gets worse. Then I have to learn to accept even less from myself.

Some people think that this is just one of the many ups and downs of my condition. That's partially true. But my good times are getting shorter and less positive. And my bad times are now unbearable, and lasting longer. So while I am still a study in oscillation, it is clear that my condition is still steadily deteriorating, overall.

I'm trying to accept this. Then, I'll be able to help others accept it.

Thursday, October 1, 2009

The Walk-still recovering

I am grateful to everyone that helped me in any way with the recent Conquer Chiari fundraising walk. At the 30 nation-wide sites, 3500 walkers participated, raising over $250,000. More information about funds raised is to come. Currently, my team has raised a confirmed $1445. However, I know that some donations haven't yet been accounted for. Whatever the final number ends up to be, I am so thankful to everyone that walked and donated.

Since the walk last Saturday, my body has had a flare of all symptoms, particularly those directly related to settling/dysautonomia. It's like every step I took in the walk made my head sink a little lower on my spine (at least that's how it feels). I've had a migraine for several days in a row in addition to a difficult instability headache. I've also had worsened nausea/pounding heart/breathing problems, all associated with cranial settling. The only thing that helps is traction. I've been using my Aspen Vista collar for cervical traction. It's not perfect, but it works as well as any home traction. Except for if I lay on the floor, and someone pulls my head away from my body...that is the ultimate symptom reliever. It's a great simulation of my hopes for a surgical outcome: relief of the headache, the overall sick feeling, and better breathing/heart functioning. I can't WAIT until surgery.

More than I really embody the adjective "courageous," I have been forced to practice the virtue of patience. Because I always seem to be waiting to feel better. Waiting for the doctors to think of a new treatment, to carry out that treatment. I wish I didn't have to be so darn patient!!!

Work is hard. My workdays are quite oppressive. I am definitely working as much as my body will allow. My days are as long as I can possibly stand them to be, often longer. I smile for those around me, but when I get in my car, I often scream just to release the pain and frustration. Then I go home and remain horizontal until the next time I have to work. Living this life is really like putting on a show. It's all an act! I guess I'm getting pretty good at it. I just wish I didn't have so much pain and sickness to hide.

I've been working hard to change two things about myself:
#1 I've finally switched to Skim (lactaid) milk, after a very long and gradual transition. It may not seem like a big deal, but it is to me.
#2 I've changed my sleep schedule. I took advantage of the calendar alarms in my phone to gradually wake up earlier and earlier, which makes me get tired earlier and earlier. It was a challenge, because tiring myself too much makes life impossible. But I'm proud to say that I usually fall asleep (without a bunch of sedatives) in the p.m. hours, and I wake up around 10 a.m. with no alarm. With an alarm, I can wake around 9:30. Any earlier, and it just doesn't seem to be worth it. But I'm very proud that I'm no longer up all hours of the night. I only need 50mg of Provigil, plus 30mg of caffeine, to get through the day. The extra stimulants were causing my insomnia (along with my episodes of hypomania).

In fact, it's almost 9:30 p.m., and I'm getting very sleepy. I may not need any sedatives or tranquilizers tonight. And I should have no problem waking up in the a.m. hours if I go to bed by 10 p.m.

That's all for today. Thank you to everyone for your ongoing support. I know that it's hard to remain interested and supportive when my challenges have been going on for so long. I also know that my problems are not the worst problems to have. I know that I am lucky to have so many people encouraging me. I just still have to find a way to force myself through each day. And that will can only come from inside.