Monday, December 22, 2008

Challenges for the holidays

Well, things have been getting worse. I guess that's the only way to put it. I've just definitely been feeling worse and worse and able to function less and less. I'm needing to spend a good part of my morning and afternoon in bed on an average day. That's made shopping and enjoying my break so hard, because I feel so awful all the time, and I haven't been able to get out to do anything. So I apologize in advance for the gifts this year. I guess I couldn't afford much of anything anyhow. So, poor Gus has been doing all of the cooking and dishes and errands while I rest and try to keep surviving. But at times, my resolve has gotten weaker. I've definitely begun to wonder how I will continue working in the state I'm in. Frankly, I don't think it's a very good idea. My body is screaming out for more and more rest. When I take pills to avoid that rest, it only feels worse later. It's just so miserable. It feels a lot like before my first fusion, as things were getting worse. I'm suffering from instability symptoms almost constantly. At this rate, it won't be long before I can't drive, can't work, can't function. I would lose everything. I'm so scared. I'm not being negative. This is not pessimistic thinking. I'm just facing facts. I've been through this before. I know where this leads.

I hope this next surgery really lasts. What if my stupid connective tissue just keeps sagging out of whatever position it is set in? I just need it to be soon, before I lose everything. People are counting on me. I can't stand to let everyone down...again.

Monday, December 8, 2008

Good News Day!!!

Today was the day for good news.

#1 I got in touch with Dr. Shah's office. My glycohemoglobin test came back perfectly normal. No diabetes, no prediabetes, no change in diet needed. Perfect!!!

#2 I saw Dr. Camacho at Loyola. She told me that I have SECONDARY hyperparathyroidism causing my osteopenia. The raised parathyroid levels are due to a Vitamin D deficiency. The treatment is a megadose of Vitamin D once a week (50,000 IU's- The normal dose is closer to 500 iu's). She expects this once a week treatment to improve my bone density in several months. She expects symptoms like achyness, soreness, bone and joint pain, fatigue, and depression to all begin to ease after approximately 4 weeks of treatment. There is nothing wrong with the parathyroid gland itself, so nothing more needs to be done. Just start taking the megadose of vitamin D and have my urine/blood/bone tests again in April.

So, thank God for good news.

I am very tired with a great deal of pain tonight (about a 7 right now), so I'm going to rest and try to enjoy the good news.

Sunday, December 7, 2008

Quick update

The only thing I have to add is that I think a recent raising of my Cymbalta dose is responsible for my recent jitters and sleeplessness. So hopefully, by returning to my old dose, I'll be able to get more sleep again.

However, it's interesting to add that my gag reflex seems to be completely gone again, which has brought back the choking problems fully. Also, there's the frequent, painful hiccups that have returned. Both of these are a sign of brainstem dysfunction, from my cranio-cervical instability.

That's all for now. Everyone hope that Gus makes it through his final exam on psychopathology tomorrow!

Saturday, December 6, 2008

Random extras

I have a bunch of little things going on.

1) I know that my new medication, Neptazane, is responsible for the new tingling in my hands and feet, and I need to email my TCI nurse about this, because it could be the sign of a more serious side effect.

2) I had a very high non-fasting glucose reading, combined with a low CO2 reading, leading my doctor to do a glycohemoglobin test, which is an initial test for diabetes. This was done Tuesday, and I waited to hear of the results all week, but I guess I'll wait a little longer. This could potentially be a new diagnosis. UGH!!!

3) I've developed insomnia recently. For about 5 weeks, I've awoken in the middle of the night and not been able to get back to sleep without Klonopin. This week, the Klonopin hasn't even helped. Last night, I tried a Valium, which normally knocks me out. I was WIDE AWAKE all night. Normally, I can't even function on Valium. Last night, I stayed awake reading my book all night!!! I was sure it had to be caused by a medication, but the only new medication is Neptazane, which does not have insomnia as a side effect. So, I have no idea what's going wrong with me. But certainly, the insomnia is contributing to my worsening fatigue. Which leads us to:

4) Worsening fatigue: I've pretty much been sleeping all day until it's time to get ready for work around 2:30, and I'm practically falling asleep at work and driving and wherever I go. I wonder if I should have a new sleep study, like the last time I had such narcolepsy.

That's all, except for an extra thank you to everyone in my life who helps me through these ridiculous problems.

Sunday, November 30, 2008

Thanksgiving update

Well, I had a blood test last week, and the nurse called to tell me that I need to discuss the results with the doctor (my general practitioner, Dr. Ghanshyam Shah). I'm assuming that he also discovered the hyperparathyroidism. I have an appointment with him scheduled for this Tuesday. Maybe that means I will get some credible information about a week earlier than expected. I'm still, of course, waiting for my appointment with Dr. Pauline Camacho, the endocrinologist at Loyola, on December 8th.

My general body aches have been getting progressively worse. Hopefully, this is due to the parathyroid problem, and could be easily fixed. I'm really hoping that I'll be able to schedule the removal surgery a.s.a.p., because I've been feeling worse and worse.

The other thing that is progressing is my cranio-cervical instability. During spells, I feel my brain ache and feel heavy, and I get extreme nausea. I know that this is the exact feeling that restricted me to bed not so many years ago. In some ways, I can't wait for the fusion surgery to come...no matter what I have to go through, in the hopes that I may actually get better this time. I think there is reason to believe that this is the time. This is the surgery that will finally help! I hope I don't have to become completely debilitated before it is time for surgery, though.

If nothing else, this little parathyroid operation should be awesome. It's known to have a fast recovery, no side effects, and quick results!!! It will only ease a few of my worsening symptoms, not all of them. But even that will be worth it!

Tuesday, November 18, 2008

Symptoms

I found this list of symptoms. It was a pre-surgical list I made in June 2008. Unfortunately, since then, I only had to add symptoms...not remove any. It's not perfectly organized anymore, because I had to add so many things. I'll have to fix it sometime. But, here's the updated symptoms list.

Headaches
constant pressure headache (pushing out around the skull)
facial pain through cheekbones
jaw pain--tires easily, making it difficult to chew
eye pressure/pain
Usually worsened by light and low sounds
migraines 3-5 days per week

Nausea/fatigue/sick feeling
every day after doing too much
some days after doing nothing

Back pain
lower spine, mid spine, neck, muscle spasms in neck and shoulders

Tachycardia
always when upright in mornings
sometimes during sleep (very infrequent)
heartbeat irregularities/arrhythmias
orthostatic intolerance
heart working extra hard and pounding

Low blood pressure
from standing (5 minutes still, 15 minutes walking)
spells several times a week--semi-conscious
dysregulation

Falling/fainting
fall several times a day
weakness
legs giving out

Heavy head
after holding head up for 30 minutes

Swallowing problems
trouble swallowing pills-need chin down, sometimes gets stuck
choke on food and water
water inhaled and throat closes

Wake up sweating and shivering

Bladder problems
early signs of loss of bladder control
urgency
frequent urination
feels like a constant need to urinate

Out of it/easily startled/confusion/difficulty concentrating/aphasia/

Sleep problems
difficulty staying asleep

Bone and joint pain

Skin sensitivity/allodynia

Poor proprioception

Painful tingling in heels

Orthostatic intolerance and exercise intolerance

Vertigo spells

Clumsiness/dysequilibrium/loss of balance/decreased reflexes

Pupil dilation

Muscle spasms
sharp pain and burning in shoulders

Temperature control problems/patches of goosebumps/chills/overheating

Episodes of cranio-cervical instability
vertigo
flushing
nausea
pounding heart
chills

Monday, November 3, 2008

Overview

Here is a very brief overview of the conditions I have:

Chiari Malformation: A skull malformation. My skull was formed too small, causing pressure in the back of my head, and a blockage of fluids that should flow freely in and out of the brain.

Ehlers Danlos Syndrome (EDS): A connective tissue disorder. The main things affected in me are my ligaments and veins. My ligaments are looser than they should be, causing certain joints to easily dislocate. My veins and arteries are also lax, making it difficult for blood to be pumped the way it should.

POTS: An autonomic dysfunction. My autonomic nervous system malfunctions, causing problems with all involuntary functions of the body. This causes difficulty standing, due to my heart rate and blood pressure not reacting properly to the effects of gravity.

Tethered Cord Syndrome (TCS): A spinal cord malformation. My spinal cord is anchored in place, not allowing for it to move freely within the spinal column.

Cranio-Cervical Instability: When EDS and Chiari join together, the skull-spine joint often becomes unstable. This causes trouble swallowing, nausea, heartrate abnormalities, and other autonomic dysfunctions.

Hyperparathyroidism causing Osteopenia: Overgrowth of one or more parathyroid gland, causing excess PTH, which reduces the amount of calcium in the bones and increases the amount of calcium in the blood. This causes fatigue, joint pain, and depression.
__________________________________________________________________

Symptoms:

Headaches--I have a constant pressure headache. This pressure sometimes reaches a debilitating level. I also get migraines and more acute, sharp headaches.

Nausea--Nausea can be caused when there is increased pressure on a certain part of the brain. It is often worse when I am upright, and relieved when I lie down.

Back pain--I have pain throughout my spine. This is caused by the tethered spinal cord and the loose ligaments holding my spine together.

Fatigue--I require a great deal of sleep. If I don't get enough sleep, my symptoms will worsen, leading me to return to bed and get more sleep. Basically, I am a slave to my body. If it wants more sleep, it will get it.

Tachycardia/Low blood pressure/fainting--After standing for too long, my heart races and my blood pressure drops. Sometimes for no reason at all, my blood pressure gets very low, and I can fall into a state of reduced consciousness.

Heavy head--Due to the instability, I have difficulty holding my head up. This is very tiring and leads to severe muscle spasms in my neck from trying to support my head.

Joint pain--I have pain in all my joints, especially my knees and hips. This is sometimes severe enough to prevent me from walking. It is caused by EDS and hyperparathyroidism.

Choking--I am more and more frequently having choking spells, when I inhale a food or liquid, and my airway closes. This is caused by worsening cranio-cervical instability.
__________________________________________________________________

Treatment:

I take medication to constrict my veins, in an attempt to help my blood flow improve. I also take salt pills regularly to force my body to retain more fluid, which can help keep my blood pressure up. Salt pills are also the only thing that helps when my level of consciousness lowers. I try to avoid pain medications, because I've been in pain for so many years, and I don't want to destroy my digestive tract. I treat pain with ice packs, heating pads, and lots of rest.

I've already had three major operations, but obviously, I'm not better yet.

In July 2002, at the age of 18, I had a posterior fossa decompression surgery. This involved removing part of the base of my skull and the back of my C-2 vertebra. I felt much better at first, but started to get worse again after a couple months.

In December 2003, the day after my 20th birthday, I had a cranio-cervical fusion. Titanium rods were bolted to my skull and screwed into my top 4 vertebrae. This was intended to fuse my skull in place atop my spine.

After that last surgery, I worked very hard to recover. When symptoms didn't improve, the doctors said that nothing else could be done. Then, I began to search online for more answers. This led me to have another set of MRI's. I sent these to my doctors at The Chiari Institute in New York. It was confirmed that I have an occult tethered spinal cord. It was also found that I have an inadequate fusion.

In June 2008, I had a section of the filum terminale operation to de-tether my spinal cord. This supposedly release the tension in my spinal cord. I haven't noticed any changes in symptoms since then.

I will probably need to have the enlarged parathyroid gland removed in an operation in the front of my neck. I will see the doctor about this December 8th.

I will also require a revision to my current cranio-cervical fusion. This will reset the position of my head, allowing for greater stability. I hope to be able to schedule this for the summer of 2009.
Well, it was mostly a good weekend. Who’d have thought?

On Friday, Gus and I went to a Halloween party with some of his friends from school. It was fun, but I ended up standing for too long, which led to a long low blood pressure spell. I was mostly unconscious for 20 minutes. It took 2 salt pills and tons of water, plus a lot of time resting to really wake up. What a way to make a first impression!

Oh well. Saturday and Sunday were better days. They were actually pretty fun. I rested, finished a book I was reading, and got all the cooking for the week done. Plus, I made a cake, which I brought to my friend’s house.

Of course, Monday had to come. Back to the usual feeling of dread from knowing I have to go to work and be a productive person. Again, it’s not that I dislike my job. Actually, I couldn’t think of a better job for me and for this time of my life. But still, it's hard to face a day of work, when my body makes it so hard to make a through.

I have to try to force my body to go get dressed now. Try to ignore the pressure headache, which makes my whole brain hurt; the jaw pain, which makes it hard to eat; and the joint pain, which makes it hard to walk.

I have to remember to try the strong pain meds more often. I know they made this weekend much more productive and enjoyable. I'm always scared to take them too often. But what better time than now to make life a little more livable? I guess I'll try it again today.

Oh yeah, my digestion has been slowing down quite a bit. So, I've had to add my soluble fiber supplement back into my diet--which is frustrating, because I thought taking the gallbladder out and fixing my tethered spinal cord would solve this problem. I guess I still have the POTS and the medications contributing.

Off to try to live another day. Maybe. I could try the painkiller now, but then it would wear off during work. So the question is: do I need more help getting started with my day, or making it through work?

Side note: thank you for all of your concern about Buttons! She's doing much better now. She went to the groomers this weekend, and she'll be coming back home with me today.

Seriously, I'm going to get off the couch now and get dressed if it kills me.

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

Hyperparathyroidism

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 http://www.endocrine.niddk.nih.gov/pubs/hyper/hyper.htm

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.

Carolyn

Friday, October 24, 2008

Ramblings

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 link...one other abnormality:

http://en.wikipedia.org/wiki/Bicuspid_aortic_valve

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.

Monday, September 29, 2008

I have a horrible high-pressure headache today, plus pain in my jaw and face. My knees are also quite painful. I need help. Here's an article I found about a girl with chiari:

http://www.wickedlocal.com/weymouth/homepage/x1213266330/11-year-old-lives-in-constant-pain-from-rare-disorder

And an informative article about Ehlers-Danlos Syndrome, which is probably contributing to my body pain:

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=eds3


Oh well...more research...still no help.

Thursday, September 25, 2008

Need a pain doctor.

I'm so worried at the severity and progression of my pain symptoms lately. I'm having frequent occipital and temporal headaches. Bad muscle spasms in my back. Sharp back pains. Muscle aches, especially in my legs. And scariest: pain in my knees and hips when weight-bearing. The pain lingers after I've been walking or standing. It could be a sign that my loose joints are wearing thin already. I need to get to the right kind of doctor, and soon. If only I knew what kind of doctor could help me.

Wednesday, September 24, 2008

I just wanted to re-post some really important information about the prevalence of chiari, and the number of federally-funded research studies:

Number of people with the following conditions:
ALS (Lou Gehrig's Disease): 20,000 cases in US
Huntington's Disease: 30,000 cases in US
Multiple Sclerosis: 400,000 cases in US
Parkinson's: 500,000 cases in US
Chiari: ~400,000 cases in US (probably more as so many new people are diagnosed every year)

And the number of federally-funded studies for each condition:
ALS: 758
Huntington's: 975
MS: 1,702
Parkinson's: 3,585
Chiari: 10

Seriously. This information is available at:
http://www.conquerchiari.org/newly%20diagnosed_files/frame.htm

And even if you leave the government out of it: think of how often you hear about these other conditions. Think about how much money is raised in fundraisers and walks across the country each year. I truly hope that chiari is on that path...the path to awareness. Because awareness truly does lead to more funding for better research and better treatment options. It also helps patients feel less alone when people understand what they're going through...when people take their condition seriously. If there were more chiari awareness, then gradually, doctors would be better educated in chiari treatment, and patients wouldn't have to travel cross-country or farther for adequate treatment. And the few doctors out there wouldn't be alone in their research and treatment. They wouldn't have the burden of treating all of the chiari patients out there...and fixing all of the botched surgeries performed by local "specialists".

However, I would also like to mention that Conquer Chiari's Walk Across America raised $120,000 for chiari research and awareness. This is a huge success. And it's amazing to know how much just my little group of family and friends was able to contribute to the total number. Personally, I was honored to have $525 donated in my name. But with my mom, my aunt, and my uncle walking as well, I'm sure our donations were substantial. I'm humbled by the amount of support I received.

We hope for the walk to become an annual event, and grow every year.
I wrote an incredibly long post, but the computer lost it when I tried to publish it. Now, I'm too exhausted.

I'll just say that I passed out tonight after work, and I feel terrible now. But at least I avoided the e.r.

I'm so mad I lost that post. It's so hard to put my thoughts into words. It's even harder to recreate those words.

I also wrote about fusion surgery being my last realistic hope to feel better in this lifetime. I talked a lot about how I don't believe you need to be super-optimistic to have a chance to recover. I think it has more to do with seeking out new treatments and trying everything you can...not giving up.

I sometimes, like yesterday, want to give up. Give up working. Give up driving. Give up all of the things that cause the most stress and pain.

I'm worried that exercise...even just walking around the house or getting in and out of the car, causes me so much pain. How will I stay in shape or even remotely healthy? Walking hurts. I can't swim with my darn fused neck. I need to find a way to keep my body moving...without using up to much upright energy, and without causing more aching muscles and joints than I already have.

I mentioned wanting to find a pain clinic in the Chicago-area for my generalized body pain that has been plaguing me for some time now.

Finally, I talked more about the "Spoon Story" I mentioned in the last post and how it really helps to describe how I feel. I'll have to retell that another night.

Waiting...

Things have been quite hard lately. I had to miss work yesterday, because I was truly paralyzed by depression. I have a psychiatrist, who prescribes me 5 different drugs...I've been on some combination of them for 10+ years. I haven't had a psychologist since last summer. One was recommended to me, but I've just found out that she is not in my insurance network. So, I'll have to find a different one. But realistically, I don't know if anyone can really take the hopelessness away. It just comes and goes, as it always has.

I seem to go through two different phases: the fighter phase, and the resignation phase. While I was actively seeking out new treatment, planning trips to New York, having surgery, and doing physical rehabilitation for the majority of this year, I was in a fighter phase. I fought my multiple diagnoses hard, and tried to find ways to rise above them. But now that all of that is over, I've had to accept my life as it is...again. And it hurts, knowing that there's nothing I can do to feel any better. I've been through the cycle so many times. I've been in this exact place, feeling these feelings, so many times. But it never really changes. Because no matter what medicine they put me on, or how they cut me up inside, how many new scars I have on my body (and on my soul), I still go back to feeling like this.

My current plan is supposed to be to wait. I need to see an endocrinologist to have my very mild osteoporosis-like condition treated. Of course, I've already had one refuse to treat me, and I'm awaiting an appointment next month with an osteoporosis specialist. We'll see if she is willing to treat me. The only reason this matters is that Dr. B will not consider further treatment until my bones have a higher density. I have to be on that treatment for 18 months for Dr. B to be satisfied.

So, I'm waiting for that appointment. Also, I have to wait for a full year after spinal cord detethering to see full recovery. (They said the same thing after my fusion...) I just have to wait and see if anything gets any better. That's a really hard place to be in.

I need to work on arranging another support group meeting...but it's a little hard with my schedule and my exhaustion. Still, I think it's an important thing to do.

The widespread body pain has really been plaguing me lately. I should probably consider a new pain doctor, as well. I've had 2 local pain clinics run out of options for me. So, I'll have to find a new one, somewhere. It's quite likely that my pain stems from my Hypermobility Syndrome. There's some interesting information about how this relates to all-over body pain at this site:

http://www.hypermobility.org/painandhms.php

It suggests that people with EDS/Hypermobility Syndrome "may also have a fault in the way their pain signals are picked up for onward transmission to the brain".

There's a story on another site, But You Don't Look Sick, about what it's like to live with a chronic illness. It was originally written about living with Lupus, but it applies to people with all sorts of chronic illnesses. Here's a link, if you're interested. Maybe you could show it to someone you love, to help them understand:

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf


Thanks for listening...to anyone out there.

Tuesday, September 23, 2008

I am not okay. I'm getting to be very depressed. I am so sad so much of the time. I know I'm not fun to be around. I'm just so sad. It's such a long, hard journey. I spend much of the day alone. I spend so much of my time feeling so sick. I feel like I have to spend my life pretending to be okay, pretending to be happy, pretending that it's not a challenge to make my body move, pretending to be strong enough to deal with all of the pain. My whole life is an act.

I don't know what could be any different in my life. There's nothing that can change. I like living here with Gus. He is my partner. He's just not around very much. And that won't change for years. Who knows if that will ever change? I love him so much, and he makes me so happy...when he's here...

And it seems that I will be sick for a very long time. Nothing seems to change the way I feel. My pain, my fatigue, my weakness, my intolerance to exercise...it just doesn't change. I can feel my heart work so hard just to keep pumping. I feel the strain it takes just to get the blood to my brain. I just don't know how to keep moving through this life. It's so hard to do anything. I have to fight just to get my body to get up and get dressed in the morning (or afternoon). How long has it been like this? Since the first surgery 6 years ago? No, probably longer. I wouldn't have had that surgery unless I was pretty sick before then.

I'm becoming hopeless again. Things are not going to change for me. I see no end to the pain. I don't know how to make this stupid body work any better. And apparently, neither do the doctors. This last surgery seems so worthless. I pretend not to care. But it matters. I suffered all summer. I worked my butt off to recover. But nothing changes. I don't feel any better. It is still so hard just to make my body move. Such an effort just to walk around. I just hide the strain and pain as much as I can. I know they want to offer me more surgery. There is one more ordeal I could put myself through. But would it make me any better? Will anything ever make me feel any better than I do today?

Sunday, September 21, 2008

The long weekend is ending

The chiari walk yesterday was a total success. I will post when the final tally of donations is calculated, but we were approaching 6 figures last time I checked!!! It was awesome. I was surrounded by members of my family (including Gus), and was reunited with people from the chiari support meetings. It was great. The coolest thing: there were a bunch of regular people there, and all of them knew about chiari! I think this is a really positive step for chiari awareness and research.

We also found out yesterday that Illinois can finally be included in the list of states that have declared September as Chiari awareness month.

The downside:
The walk was held in the morning. I had to wake up at 7:00. I was able to do it, painfully. I even actually walked for about one mile, once my pills had kicked in. It was very hard, but I did it. Unfortunately, I've been very sick ever since then. Yesterday afternoon, I developed severe pain around my belly button. It felt exactly like the night I was in the e.r. for gallstones. So, we were pretty sure we'd be heading back to the emergency room. Luckily, after writhing in pain for about 90 minutes, the pain eased off. Today, I only have some soreness in the area of my gallbladder. I have no idea what it was about. At first, we thought appendix, since they said the pain from gallstones is hard to tell from appendix pain. But, it eventually lessened, so it really couldn't have been my appendix. I know it wasn't indigestion. I know all about indigestion. I can only guess that it is somehow related to my missing gallbladder, since the pain was so similar. And it was especially odd, because it came on suddenly, and was very severe pain (about a 9). It's the kind of pain that makes you just moan out loud, cause you can't help it.

Anyway, that episode ended, but I didn't get any rest yesterday. I slept fine last night, but have felt terrible all day today. I'm going to have to miss the family gathering tonight, because I'm stuck in bed, and still need to do laundry, cooking for the week, and groceries. Ugh. My symptoms today are pretty severe. I woke with a migraine. Luckily, the Relpax was able to help, but it did make me extra dizzy, too. My joints and muscles are so sore and achy. I can barely move without moaning. My knees hurt, my hips hurt, my ribs hurt, my jaw hurts, my face hurts, my eyes hurt, and my shoulders hurt. My muscles all ache. And I've still got a bad headache, even though the migraine is gone. I still have a sore throat holding on. I've had DayQuil and Advil. Other than that, I don't know what else to do. It even hurts when I take a deep breath. So, I'll stay in bed for now. I'm so tired. I guess it's pretty normal to feel this way.

That's the pretty bad thing...it seems like the more moving I do, the more I hurt the next day. That makes it really hard to exercise...when it actually makes you feel worse...not just for a short time. I can only assume that the body pains I have are related to the Ehlers-Danlos Syndrome (that's the collagen defect that causes my ligaments to be lax). When your joints are loose, they slide around. That causes the pain...I guess.

It's just so hard to have so many diagnoses, to feel so awful, and to still not really know why I feel the way I do so much of the time. After all these years of surgeries and treatments and doctors and meds, there's still so much wrong with me. I sometimes wonder if I have fibromyalgia, too, since it is known to cause widespread pain. It has been found that exercise decreases pain threshold in people with fibromyalgia, when it should increase it. Fibro is usually a comorbid disease, meaning it occurs with another condition.

I'm considering seeking out a new pain doctor, since the pain impedes so much of my life. There are tons of medications out there. I can't have tried all of them already! And I'm not ready to give up on living.

Friday, September 19, 2008

I got a cold last weekend. It didn't seem too bad, but then on Wednesday, it turned into something worse. I was so weak and nauseated. I could barely move and slept all day. Then, Tuesday, I woke up with horrible burning pain through my whole left leg. Luckily, it went away after some rest, breakfast, and Advil. I've also had very frequent migraines this week. I only missed one day of work, but it was a big day. I feel guilty about that.

Well, it's time for a big weekend. I see my psychiatrist, then teach a piano lesson today. Then, tonight is a family birthday celebration. Tomorrow morning is the CHIARI WALK!!! That is huge. I am so excited. I just hope my body can handle the stress of an early morning. Thank God I'll have my wheelchair. Then, Sunday is another family celebration, with the other side of the family.

So, I hope I'm up for everything this weekend. I've gotten enough rest this week, so we'll see.

Thanks to everyone who has sponsored me and my mom in this walk! Your generosity means a lot to me, and is going toward helping so many others. Also, my Uncle Greg and Aunt Corinne are walking, which is so amazing! I am so lucky to have such a supportive family.

Information about the chiari walk is at
http://www.conquerchiari.org/walk/CCWalkAcrossAmerica.htm

The Palatine, Illinois flyer is here:
http://www.conquerchiari.org/walk/Flyer%20Chicago.pdf

Friday, September 12, 2008

Don't forget the chiari walk is coming up on September 20th!!!

http://www.conquerchiari.org/walk/CCWalkAcrossAmerica.htm

In addition, there is a bill that was just introduced to Congress. House Resolution 1422: Recognizing and promoting awareness of Chiari malformation and expressing support for designation of a "National Chiari Malformation Month".

If you want to read the full details, go to:

http://www.govtrack.us/congress/billtext.xpd?bill=hr110-1422

I'll try to follow the progress of this bill.

Thursday, September 4, 2008

I slept well last night, but still have a migraine today, in addition to my constant pressure headache. Ugh.

It's hard to work every day. I may not have it in me. It's so frustrating. My body is so sick and tired. I just can't do everything I need to do. Some days, I just want to give up. My body fails me so often.

How will I find the energy to walk the dog in the rain, take a shower, and teach lessons? It all seems like too much for this sick body.

Wednesday, September 3, 2008

I've worked 2 days so far. And I'm not gonna make it home tonight. That's really frustrating for me. But it's just too much of a hassle to drive an hour just to be back here tomorrow afternoon.

I wear my collar when I drive, but I still get a horrible muscle spasm in my right shoulder/neck area. I need a massage. I wish I could have massage therapy at the end of every evening. The pain is so bad. I wish something could help. I don't even have my valium with me.

Friday, August 29, 2008

Another Bad Day

Horrible migraine and fatigue today. Where did my migraine medication go? It only works some of the time, but it would sure be worth a try today.

So tired. Can't get up. I've been in bed all day. I'm really worried about working again. This is never gonna work.

Tuesday, August 26, 2008

I did indeed fall asleep on Saturday. It was a bad day all around.

Sunday, the "in-laws" came over and I cleaned and cooked. Everything went well, with the exception of a bout of serious narcolepsy after dinner. I was so gone. I couldn't even say goodbye...That's certainly outside of my range of normal.

Yesterday, I did everything I needed to.

Today was a day off, but alone in the apartment. I tried to make sweet and sour chicken, which would have been good, except I don't have a lid for my skillet, so it splattered everywhere. And, I burned the white rice.

Thank God I didn't mess up the food on Sunday. Dinner was edible tonight, but not great.

I guess I'll try to take Buttons for another walk so the poor dog doesn't bore to death.

Saturday, August 23, 2008

another day

Another bad day.

So sick. So tired. May need a nap. This would be another day I'd have to miss work. It's getting very discouraging. I'm having brain fog. It took me 5 minutes to come up with the word, "discouraging". I'm really out of it. I'll be unconscious soon. I can feel it coming on. Goodbye for now, world.

Friday, August 22, 2008

Fun updates

Took a walk with Buttons tonight around our little pond.

They're putting up public grills for barbecuing around our complex. Buttons was scared to death of this new addition, and barked at it ferociously. We dragged her up to the grill to sniff it. I lifted her up for a more thorough inspection. And still, as soon as we put her down, she ran away from it.

Plus, there was an enormous BEAVER in our pond. For real. This is largest rodent found in North America. It was so weird, and a little scary, since they are quite vicious. But what a sight! Gus estimates it at 55 lbs.

I'm gonna go make some cookies tonight. It's nice to have a day with good energy. I still wasn't able to leave the house until 3:00, and haven't been very active...but better energy than most days.

Chiari Walk Coming Up!

The first ever Conquer Chiari Walk Across America is being held on September 20, 2008. I will be participating in this walk. It will help to raise money for research, education, and awareness of chiari malformation and related disorders.

All information is available at:

http://conquerchiari.org/walk/CCWalkAcrossAmerica.htm

I am walking at the Illinois site, in Palatine, IL. Please consider making on online donation to help me walk with a purpose! Click on "Online Sponsor Donation".

Thank you so much for your help!

Still trying

I'm setting up my piano lesson schedule for the fall. My fear is that I will not be able to follow-through...driving back and forth an hour each way...getting myself out of the house by 1:00 every day. I just don't know how I'll do it. But there really is no option other than to give it a good try...even though the effort it takes is just too much some days.

It's just so hard. The fatigue is so strong some days. The first half of the day is especially hard (9:00am to 3:00pm). I'm also having full-body joint and muscle pain most of the time. I could easily be diagnosed with chronic fatigue or fibromyalgia...but I don't need a new diagnosis. I need a new treatment!

I don't know what kind of results to expect from this surgery. I'm almost done with physical therapy (I won't have time for it once lessons start in September, anyway.). I can continue to rebuild my core strength. But it's mostly just a waiting game. But I don't know what I'm waiting for. Maybe some of the body pain will go away. I don't expect the fatigue or the POTS symptoms to get any better. And without that, it doesn't matter if my daily headache doesn't get any better. Headache or no headache, you can't do anything without the oxygen in your brain.

I keep thinking back what Dr. Milhorat said during traction. He noticed that as soon as they lifted my head to the "sweet spot", the color returned to my face. My headache went away at this point, and my brain fog went away. I was getting enough oxygen in my brain!!! I won't feel better until that is my normal state...a fully-oxygenated brain. At least, that would make sense to me. I know that some people are opposed to the idea of revising the fusion, but how can that evidence be refuted? I was there, I experienced it. I experienced my head being lifted, and that directly reducing my POTS symptoms. Essentially, they could be eliminated...along with my headache and fatigue. If those problems were solved, I could live a normal life. What more could I ask for?

Wednesday, August 20, 2008

Sick and sad

Some days, I just want to give up.
It all seems like too much.
How to go on.
The body is so weak, so tired, so sick.
I can't be the person I want to be,
the person I'm meant to be.
I hurt.
No one can do anything.
Nothing can help.
I fear.
I may fail.
I may not be able to live this life.
I live the bare minimum.
But even that may be too much.
For this body,
This weak and tired body.
Just to start a day is a battle.
How to continue.
How to push forward.
How, when I am so alone.
When no one can understand.
When no one has answers.
When I am bound to let everyone down.
When I may not make it through this.
When the most I have to offer may never be enough.

How to not give up?

Saturday, August 16, 2008

Hoping for a Better Day

Well, things with Buttons have calmed down. She's going through a real transformation in personality. She's getting used to car rides and her new environment. She's getting more exercise. She's barking a lot less. So, I think she'll fit in just fine in our little household.

We have friends coming over today, so I have to try to be healthy...at least get dressed and make some food. My energy has been so low lately. It makes me worry about starting work in a few weeks. This morning, I was too nauseated to finish my bowl of cereal, had vertigo spells, tachycardia, and severe lethargy. So that's a rough start to the day...but nothing too unusual.

Maybe it will get better as the day goes on. Especially if someone would turn that ugly music off (Gus...)!

Thursday, August 14, 2008

Settling in

Things had finally calmed down a bit around here. Then, yesterday, we welcomed Buttons into our home. I don't think she's very happy about it. Buttons is 8 years old and has lived with our family that whole time, in the same house. She's also never been an "only" dog. So being in a new place is very stressful for her. We had a rough first night. We'll hope things get easier for her.

So far, today has been a real sick day for me. As Gus pointed out, if today were a work day, I'd be missing work. I'm still in my pajamas, and haven't managed to take my shower yet. Hopefully, the day will get better. I've been nauseated, weak, unsteady on my feet, and very tired. I woke up and 10, then took a nap from 11 to 1. That's very unusual for me. Hopefully, resting for the first half of the day will make the second half a bit easier. So, I will go make my next attempt at taking a shower.

Tuesday, August 5, 2008

Moving!

Well, I've spent the past four days moving, cleaning, and organizing, and there is still much to be done! But mostly, the move is complete. It was a horrible strain on my body. My back and neck are so sore. My feet ache all the time...I'm not used to standing this much. But all the major work is done, so today, I can do some easier jobs and relax a bit.

It's hard living this far from my parents, but I'm happy with the place we found. And I'm happy it will work for both of us.

So, this makes recovering a little harder. I'm sure a few days of rest will help. Overall, I've been surprised by my stamina during this time. So without getting too hopeful...maybe things are getting a little easier.

Monday, July 28, 2008

I've been having some good days and some bad days, as usual. Physical therapy on Saturday was difficult, because I had a few blackouts that morning. My heart rate and blood pressure were out of control. I could barely stay conscious when upright. I've scheduled the rest of my appointments for the afternoon, so I won't have to try to exercise in the morning (Yes, noon counts as morning, for me!).

Then, Sunday, I overdid it. I went to IKEA with Gus, his sister, and his nephew, and she bought us a beautiful kitchen table for our apartment. Unfortunately, I used up way too much energy. My body ached all night.

Today, despite getting a short sleep last night, my heart rate and blood pressure were a million times better at physical therapy. The difference between a noon appointment and a 3:00 appointment is like night and day (or morning and afternoon, as the case may be!). I'm a different person. Today, I did quite well in physical therapy. I felt like I got a good core workout...I don't have my 4-pack abs back yet, but I'll get there.

My parents' divorce was finalized today. The next two weeks will be spent moving (in two different directions, for me!). So, it's a very stressful time. It's quite emotionally and physically challenging. So, I'll do my best to get through.

Chiari Walk

I want to make sure everyone knows about the upcoming "Conquer Chiari: Walk Across America". The full information is available here.

On September 20, 2008, there will be 20 walks held across the country to raise money for chiari awareness and research. This is a very worthwhile cause. If you can help out it any way, it would mean so much to me. If you can participate or sponsor me, that would be great! I will be attempting the walk (with my wheelchair and a partner). It wouldn't be too bad, except that it's in the morning. And if you know me at all, you know that my body doesn't work in the morning. So it will probably be more exercise for whomever is pushing me. If you would be interested in sponsoring me, please follow this link. If you choose to do this, input my full name: Carolyn Richardson. Anything you can do would help. You are also welcome to participate in the walk. It's not too late to sign up. The walk that I'm participating in is taking place in Palatine, IL.

Thanks so much for your help. If nothing else, please spread the word for me about these walks. There are other locations across the country. This is going to be a huge day for chiarians everywhere. We've suffered without recognition or understanding for too long!

Saturday, July 26, 2008

1 month post-op

I've been having an additional problem. I thought it was part of the oxy withdrawal, but it hasn't stopped. Every joint and muscle in my body aches. If I take some other pain med, it usually dulls the pain, but it makes me afraid of becoming dependent on pain medication. I also don't understand. My chief pain complaint should be my back, one month after surgery. And don't get me wrong: my back definitely hurts. But the overall body pain is more restrictive and worrisome. I don't know the cause.

Tuesday, July 22, 2008

Here's my scar right after I got the stitches removed on Monday, July 14th:





And here's my scar today, eight days later:


Monday, July 21, 2008

Anxieties

Well, I made it through the day pretty well. So I guess I don't need the strongest pain meds anymore, at least not on a daily basis.

My schedule is getting a little full...mostly just PT and planning for the moves, but I hope I'm not overbooking myself. The upcoming moves will be challenging for my body and mind. (My mom is moving out of the house and into a condo. My dad's staying in the house. Gus is moving a few towns away. I'm moving everywhere!) Such a big change is bound to be stressful. Plus, I'd really like to be able to move in with Gus pretty fully, but that is a big responsibility, since he won't be around real often to help take care of me. I'll have to take care of myself and start learning to take care of my living space at the same time. I'm trying to start planning my weekly meals and my shopping, so I can make dinner a few nights a week. I don't know how hard that will be if I'm teaching at the same time. I only have so much energy in a day. I just hope it's enough. I also need to figure out where in that tiny apartment we are going to store all of our stuff. We may need to buy an extra dresser just for the storage space, and keep it in the living room! I don't want to have just boxes everywhere. Something more permanent-feeling would be nice.

Well, I suppose regular anxieties affect us all. Everyone has to get adjusted to adult life at some point. I just hope my body doesn't let me down. I don't know if this surgery will have helped enough to make everything I have planned possible. If I'm no better than I was last year, I'm afraid it won't be enough. If I'm even a little better, maybe I'll be able to pull it off.

The other thing that's been worrying me is that several people have told me that even revising the fusion seems to fail pretty often. Dr. M sure made it seem like he knew just how to help me. I like the idea that there is something out there that can make me feel significantly better (other than marijuana...just kidding...I would never even try it!). I just want to feel better so desperately, and Dr. Milhorat has offered me that hope. I think my chances are better, since my first fusion has remained solid (my bone density isn't that low), and the traction helped so much.

I better go take my sleep meds, or I'll never get to sleep at this rate.
It seems that I was going through Oxy withdrawal over the weekend, as I lowered my dose. The body aches, sweats, and chills are all expected symptoms.

Luckily, I think most of that is behind me now, as I've switched fully over to some lower-strength pain meds. Hopefully, I'll be feeling a bit better. I do have a horrible headache today. That's no big surprise, as I have bad headaches at least a third of my days. It is sad to know that my headaches are still just as bad as ever.

I've got physical therapy and massage therapy this afternoon. I hope I'm up to it all.

Sunday, July 20, 2008

Add in a low-grade fever, sweating, and stomach pain. I may actually be sick. But then again, it could just be me. Either one sounds viable.

My brother is having some health problems and is in the e.r. today. So hopefully, that won't be too serious.

I still miss Gus a lot...have to wait that out 'til Wednesday.

So, things aren't going great. I hope they get better soon.

More pain

Last night was awful. Every cell in my body hurt. It hurt to move. It hurt for anything to touch my skin. I couldn't do anything but lay in bed and moan. I don't know if I over-exerted myself during the day, or if it was just one of those times that I don't have a good explanation for. It's the same feeling you get when you're real sick with a high fever and you hurt all over, but it's worse than any fever I've ever felt.

I'll have to make sure to get enough rest today, which is difficult when your pain medicine acts like caffeine. I feel like I've had a red bull every time I take my medicine, so it's hard to force myself to rest. But I'll do it anyway.

Friday, July 18, 2008

Pain

My pain really caught up with me this afternoon. I don't know how it got away from me. The pressure in my head felt very high. The pain throughout my entire spine was horrible. So, luckily, I was able to eat and take my pain medicine. I think the blood drawn this morning contributed to my sick feeling. So I've been drinking lots of water. I've been over-heating quite a bit, too.

So, I've settled down quite a bit now and the pain has dulled. I guess recovery goes this way sometimes.

Bored

I've been doing okay. Not too much is different. Gus is still out of town. :( That keeps my life fairly boring. But the puppy helps to keep things interesting. She's doing great. She's such a puppy, running around and chewing on things. She's a real sweetheart. But the other dog's are still not getting along with her or accepting her.

Physical therapy has become a bit more physical. Yesterday, it wore me out so much that I slept the rest of the day.

The visit with the endocrinologist was miserable. He doesn't believe my level of bone density is low enough to be treated. That would be okay with me, if he can convince Dr. B that it doesn't need to be treated. Otherwise, I suppose Dr. B will convince him to treat me anyways. Basically, based on my numbers, I am on the lower side of normal for my age. So it doesn't seem like it would need to be treated. That would be one less medication for me. So I wouldn't mind. However, I suppose Dr. B is not likely to change his mind. He knows what he wants.

I'm looking forward to my first massage therapy session on Monday. That should be very helpful.

Wednesday, July 16, 2008

Life has been going okay. My sweetie, Gustavo (Gus), is out of town. He's visiting family in Mexico. So that makes things a little boring and lonely for me.

Physical therapy is going pretty well. We do stretches, electro-stimulation, and some very gentle exercises laying down.

I've developed an intense muscle spasm to the left of my lumbar spine. Luckily, my dad is quite adept at massage, so he's been able to help me keep it at bay. It's causing me all kinds of pain, and it contributes to my difficulty sitting.

I still am not able to sit in one place for long. We saw a movie on Monday night, and I had to be walking around and stretching for the whole second half of the movie. But that won't stop me from going back today. Luckily, our local cheap theater has had some pretty good movies showing..."What Happens in Vegas", "Forgetting Sarah Marshall", and today "Baby Mama". So that's good at keeping me busy.

I'm still pretty busy with the puppy, too. She is a real sweetheart. My malteses have yet to accept her, so there is some extra tension in the house. But she's quite attached to me, and I have to say: I'm becoming quite attached to her, too.

Friday, July 11, 2008

Recovering!

Hi everyone.

I'm back to posting on my blog, for the reason I mentioned earlier...I don't want to bother people who don't want an update about every single step of my recovery.

On Monday, I got my stitches taken out. What a relief! I barely felt it, with the exception of the drain stitch, which was very deep and sensitive. So the skin is definitely less irritated each day.

I started physical therapy on Thursday. I think it will be great. I'm seeing Dr. Jamie Bartolli. She's very understanding about my back, and I'm sure she'll be very helpful with my recovery. She doesn't quite understand my POTS yet. She asked how I know I'm not just out of shape. So, hopefully, she'll read up on that and have a better understanding of my ridiculous heart rate and need for salt pills as we go.

My dad bought a puppy over the weekend. It was unexpected, and has added quite a bit of work to my day, but she is a sweet little girl. She's a shih-tzu...lived in a pet store cage for 6 months. So she's gradually blossoming each day. She would love to play with our other dogs, but they are not so happy about her arrival. She's not house-trained yet, either, so she's a lot of work. But she's very loving. I wanted to name her Winnie, but it seems that her name is Snuggles. (I liked my name, better.)

That's where I'm at. Thank you again for all of the support.

Saturday, July 5, 2008

Pictures, all mixed up...not in the perfect order

I apologize that these pictures are all out of order. Blogger does not make it easy to change the order of anything. I'll be lucky if the captions match the pictures. But at least I was able to load them all on here, finally!

Resting at Christmas...reasons why I need surgery




First steps after surgery




Gus, Aunt Corinne, and Uncle Greg, all in my hospital room in New York




A visit from Aunt Corinne and Uncle Greg (quite a ways to travel to visit me in the hospital for a few days). I'm so lucky to have such a supportive family.




A Havanese puppy we visited at the pet store the night before surgery.





A delicious last meal, combined with some retail therapy!!!








Me and Danielle, my Australian tethered cord friend




A visit from some chiari friends in the hospital room




Taking a nap after surgery




Me and Dad in the recovery room.




Me and my Mom in the recovery room after surgery




My rash from the antibiotic (no more penicillin family drugs for me)












Me and Gustavo after surgery (with my red nose from the allergic reaction)




Me and my little brother, Rob, after surgery





On our way to the mall...a good distraction before traction.




Me with my dog visitor, Petey





My Australian friend, Danielle, with her Dad




Hanging out with Gus the night before surgery.





Finishing my book...in the waiting room before surgery. So great to have a distraction.




My beautiful incision...a bit irritated and itchy





In the hotel room after surgery





No-Rinse Shampoo Cap




Me with Petey, the therapy dog :)





Dad, Me, and older brother, Chris



A last look at my back intact...


Thursday, June 19, 2008

Caring Bridge Page for family updates

I've created a webpage through caring bridge, because it allows for family members to easily update my condition online. It also sends out messages when my condition is updated. If you are interested, you can see my page at:
http://www.caringbridge.org/visit/carolynrichardson


This will be the webpage updated after surgery, so check there, not here!!!

Wednesday, June 18, 2008

Chiari Times articles by Dr. Oro

Dr. John Oro is a leading chiari expert that runs the Chiari Care Clinic in Aurora, CO. He has created a blog that keeps patients up to date on research. I've linked a few of his articles here. I think he is a brilliant doctor working hard to help with chiari education, awareness, and research.

This is Dr. Oro's explanation of why chiari goes unrecognized or ignored. It's a great article:
Chiari Times

He also wrote an amazing poem describing the difficulties a chiari patient encounters in life:
Chiari Times Poem

An amazing article about how cerebellar dysfunction may cause fits of rage:
Chiari Times Rage

Pre surgical symptoms

Headaches
constant pressure headache (pushing out around the skull)
facial pain through cheekbones
migraines 1-4 days per week

Nausea/fatigue/sick feeling
every day after doing too much
some days after doing nothing

Back pain
lower spine, mid spine, neck, muscle spasms in neck and shoulders

Tachycardia
always when upright in mornings
sometimes during sleep (very infrequent)

Low blood pressure
from standing (5 minutes still, 15 minutes walking)
spells several times a week--semi-conscious

Falling/fainting
fall several times a day

Heavy head
after holding head up for 30 minutes

Swallowing problems
trouble swallowing pills-need chin down, sometimes gets stuck
choke on food and water

Wake up sweating and shivering

Bladder problems
drips before and after urination
urgency
incomplete emptying

Out of it/easily startled/confusion/difficulty concentrating/aphasia

Vertigo spells

Hip pain/pain down back of legs

Vertigo spells

Extreme fatigue/orthostatic intolerance in mornings

Clumsiness

Temperature control problems/goosebumps/overheating

Thursday, June 12, 2008

Pictures, finally (I found time, cause I can't sleep!)

In my Aspen collar





















In my Cervical-Thoracic Orthosis...which I'm supposed to be wearing 6 hours a day!!!







































A couple days after my gallbladder surgery
















Wisdom tooth recovery

























The last time I had invasive cervical traction...not looking forward to having it again















Still pretty normal...I guess.
And please don't say "But you look so good!"

Tuesday, June 10, 2008

Surgical preparations

Most of my doctor's appointments are over-with by now.
Today, I saw the cardiologist. Cardiac clearance is required. Unfortunately, with my malformed aortic valve (bicuspid instead of tricuspid), thickening of this valve, my heart palpitations, and the tachycardia after my last surgery, the doctor cannot yet give me clearance. He did an EKG which showed the irregular heartbeat, but he is also requiring an ultrasound of the heart to be done. This will happen tomorrow.

Otherwise, things are looking good for surgery. I'm just having a bit of anxiety, which is making me a little moodier than normal (sorry to those that have to be around me).

I also wanted to mention that there is a new book out on chiari which should be quite comprehensive. It is called "Conquer Chiari". You can buy it at:
http://www.createspace.com/3338400

Friday, June 6, 2008

Fundraiser Success

Last night, my friend and colleague, Lorena, held a voice recital at Prospect High School. She did an amazing thing for me by making this recital into a benefit to raise money for my medical bills, as well as spread awareness about Chiari and POTS. It was a wonderful and thoughtful gift.

I want to thank everyone who donated last night. The total came to $469.06. Your kindness and generosity are really appreciated, and this will certainly lighten the financial burden for my family and me.

Conquer Chiari's Walk Across America

For the first time, a national chiari event is being organized to raise money for chiari research and spread awareness. So far, 5 of the 50 states have confirmed walk sites for September 20, 2008. Several states have recently declared September to be Chiari Awareness Month. Illinois is not one of these states. There is no walk organized in Illinois yet. I'd love to help out, but I won't know what I can do until after my surgery and recovery. Nonetheless, this is a really exciting time for Chiarians! National recognition is coming. It just takes time.
http://www.conquerchiari.org/walk/CCWalkAcrossAmerica.htm

Overview

Here is a very brief overview of the conditions I have:

Chiari Malformation: A skull malformation. My skull was formed too small, causing pressure in the back of my head, and a blockage of fluids that should flow freely in and out of the brain.

Ehlers Danlos Syndrome (EDS): A connective tissue disorder. The main things affected in me are my ligaments and veins. My ligaments are looser than they should be, causing certain joints to easily dislocate. My veins and arteries are also lax, making it difficult for blood to be pumped the way it should.

POTS: An autonomic dysfunction. My autonomic nervous system malfunctions, causing problems with all involuntary functions of the body. This causes difficulty standing, due to my heart rate and blood pressure not reacting properly to the effects of gravity.

Tethered Cord Syndrome (TCS): A spinal cord malformation. My spinal cord is anchored in place, not allowing for it to move freely within the spinal column.

Cranio-Cervical Instability: When EDS and Chiari join together, the skull-spine joint often becomes unstable.
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Symptoms:

Headaches--I have a constant pressure headache. This pressure sometimes reaches a debilitating level. I also get migraines and more acute, sharp headaches.

Nausea--Nausea can be caused when there is increased pressure on a certain part of the brain. It is often worse when I am upright, and relieved when I lie down.

Back pain--I have pain throughout my spine. This is caused by the tethered spinal cord and the loose ligaments holding my spine together.

Fatigue--I require a great deal of sleep. If I don't get enough sleep, my symptoms will worsen, leading me to return to bed and get more sleep. Basically, I am a slave to my body. If it wants more sleep, it will get it.

Digestive problems--Due to my autonomic dysfunction, I don't always digest food properly. I've changed my diet a great deal, but often, I still get terrible abdominal pain after eating.

Tachycardia/Low blood pressure/fainting--After standing for too long, my heart races and my blood pressure drops. Sometimes for no reason at all, my blood pressure gets very low, and I can fall into a state of reduced consciousness.

Heavy head--Due to the instability, I have difficulty holding my head up. This is very tiring and leads to severe muscle spasms in my neck from trying to support my head.
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Treatment:

I take medication to constrict my veins, in an attempt to help my blood flow improve. I also take salt pills regularly to force my body to retain more fluid, which can help keep my blood pressure up. Salt pills are also the only thing that helps when my level of consciousness lowers. I try to avoid pain medications, because I've been in pain for so many years, and I don't want to destroy my digestive tract. I treat pain with ice packs, heating pads, and lots of rest.

I've already had two major operations, but obviously, I'm not better yet.

In July 2002, at the age of 18, I had a posterior fossa decompression surgery. This involved removing part of the base of my skull and the back of my C-2 vertebra. I felt much better at first, but started to get worse again after a couple months.

In December 2003, the day after my 20th birthday, I had a cranio-cervical fusion. Titanium rods were bolted to my skull and screwed into my top 4 vertebrae. This was intended to fuse my skull in place atop my spine.

After that last surgery, I worked very hard to recover. When symptoms didn't improve, the doctors said that nothing else could be done. Then, I began to search online for more answers. This led me to have another set of MRI's. I sent these to my doctors at The Chiari Institute in New York. It was confirmed that I have an occult tethered spinal cord. It is also likely that I have a failed fusion.

I will be having a section of the filum terminale operation to de-tether my spinal cord. This should release the spinal cord and allow it to move freely.

Quite possibly, I will also require a revision to my current cranio-cervical fusion. This would reset the position of my head, allowing for greater stability.