Friday, December 3, 2010

weird symptoms

Some strange things to note that are particularly troubling today:

- I can't keep my coffee down; it keeps backing up in my throat.
- I feel nauseous.
- There is a "croaking" sound coming out of my throat, along with an uncomfortable feeling when it happens.
- My face has been hurting a lot. There is a lot of stinging and burning around my eyes and in my cheeks.
- (Yesterday I had an earache, only in my right, but it is feeling better today so far.)
- My jaw aches, but again not as bad as last night.
- My neck is really sore in the back in particular. It is stiff and weak, full of knots, and my head feels too heavy.
- There are these sore "bumps" on the back of my head, that I only notice when they are hurting, but feel like bone, so they must always be there...
- Last night it was like I was having trouble getting enough air in my lungs while I was lying down. I keep having "incomplete" yawns. wtf?
- I also keep feeling like I'm gonna puke whenever I bend to tie my shoes. I wish I had shoes that were easier to put on, but I like lace-ups for their ankle support. I must acquire lace-ups with zippers!
- A lot of sounds, particularly low sounds with bass to them are really hurting my ears.

Well... that was by no means all, but enough to talk about for now. I wish I could find pain relief that works consistently, but the nature of the pain changes so frequently, I never really know what I'll be dealing with. I seem to have become "accustomed" to a lot of it; the pains that have been around for awhile. It is the symptoms that still feel alien, that I'm not "used to", that really grind my gears. Grrr...

Monday, November 29, 2010

headaches and the like

It feels as though someone is poking my left temple, through my skull and into my brain with a large blunt index finger. My cheekbones are burning, yet achy, as if the bone is burning under my skin. There is a tightening in the back of my neck, and too the sides, below my ears, and an achy tenderness a the base of my skull, and inside and behind my ears. There is also someone poking a pointed finger into my left ear, and bugs crawling in my right ear. The entire surface of my head, face and jaw, with the exception of the middle of my chin, are sore to the touch. My balance is off. My heart rate is up. My legs and arms ache. Many of my joints feel strained. My inner and outer thighs, inner arms and shoulders are sore to the touch. I feel weak and shaky. My leg muscles are twitching.

I am supposed to have finished my assignment.

I am supposed to be in class in half an hour. :-S

Saturday, November 27, 2010


I feel like I may be loosing some...

I might as well be an alien on another planet, when I think of what I might have in common with the friends I used to have. It ought to make anyone a little blue. But we do have lots in common! I am still the same in many ways! Maybe it's more about having experiences each other can relate to and understand. And it's not as if it's easy to tell whose going to get this, and who isn't. It is even hard for me to understand. Maybe that's why I feel like sometimes I can't communicate. I think there is more I have to learn. It sometimes feels like trying to learn another language. And after I learn it, I have to learn to translate it into a language that can be understood by others. Otherwise I will just continue to rely on those few friends I am so thankful for, who do seem to get it, maybe because they can relate or maybe because they just know how to read my face and my emotions when I am talking to them. Maybe they are strong enough to just listen and give me validation without having to justify it, or make sense of everything. But if I keep relying on those few who can adequately interpret my tone and expression, I will still feel alien to those who don't, or at least haven't yet. And I will continue to miss them. I don't know if it is me or them who is supposed to bridge the gap. I think it has to be both. I sometimes feel like I am screaming and no one can hear me.

Wednesday, November 24, 2010

Feet... and Good Days!

Ever find you get all emotional because you catch yourself feeling good for a change and there have just been so many bad days, and then you finally break through to a good day, and you're just overcome?

Well that happened to me today. I just caught myself dancing while doing the dishes (think I get that dancing in the kitchen thing from Mom). I haven't felt good enough to kitchen dance for weeks. Doing the dishes has been so difficult for both me and Dani. She gets intense back spasms, and I get light-headed, nauseous, shaky, and sore in the wrists, hands and legs. But not today! My headache just about back to it's "normal" dull state, and I actually have energy. And I was okay walking the dog, except for one thing.... FEET!

My feet have been turning strange colours lately, like purple and white and blotchy. I think it is a circulation problem. As it gets colder outside, my feet are numb more often (it lasts for awhile after I come in), and they are just weird. I used to be ticklish in my feet but my buddy Nick tried to surprise me by tickling my foot yesterday, and I was just like, mmm... that feels kinda nice. I can still feel things, but I am sure there is a loss of sensation in my lower legs and feet.

Tuesday, November 23, 2010

...back from walking Sadie

Well, that wasn't too bad of a dog walk, though I felt pretty dizzy and light-headed, and had to walk very slowly. Why do some human idiots feel the need to "bark" at dogs? It is not easy to walk a dog when it is upset by the fact that you are "barking" at it! I kind of want to ring the necks of the obnoxious high school students across the street! ha. Don't worry, I won't.

Here is a video of some "twitches" that kept bothering me while I was trying to do school work this past Sunday:

going a little nuts

ARGH! So, I am starting to become concerned that I may have one or more other medical conditions other than the Chiari, that are Chiari related, so of course there is no known way to test for them in Canada. ARGH!

I am feeling a little freaked out today, partly because of these "worries", and partly because I have been noticing a lot of change and development of some of my symptoms. Last night I kept feeling short of breath. Doing anything was tiring. I also had an awful headache, at the back of my head, and in my eyes and temples, and every time I moved it felt worse. I am still feeling a lot like that today, but thankfully 10 hours of sleep and some coffee, have helped a little. Also, nothing was helping last night, but then I had some gatorade, and actually got inspired to drive to rent the next disc of Heroes and put gas in the car (while Dani pumped the gas, or tried, was kind of amusing. ha). Even though as I sat at the top of the stairs to tie my shoes, I was sure I was going to fall down them head first and make a somersault to the bottom. ha.

I have been thinking more about my grandmother's death, and about asking my Mom more about it. She was diagnosed with Charcot Marie Tooth, but she had some symptoms that were not consistent with the diagnosis, and as I understand she died suddenly in her 50's of a spontaneous "blood clot", or aneurism I believe, in or near her heart. I want to ask my Mom about the details again, but I'm just not ready to bring it up. There are forms of Ehlers Danlos Syndrome (which is one of the things I'm worried I may have) that may lead to spontaneous rupture of internal organs and arteries, or aneurisms. Since many of the symptoms I have that are not "Chiari related" according to the doctors I have seen (who frankly know little about Chiari) seem like they could be signs of EDS, or at least some sort of connective tissue problem. There is a subgroup of Chiari patients who have EDS, and don't respond well to the typically performed Chiari surgeries.

Bleh! Anyway, too much to think about. I know I shouldn't get myself overly concerned, and just continue taking things day-by-day. I want to try to get my stress level down!

I have to take the dog for a walk. I used to enjoy taking her off leash and playing fetch. I also used to take her for longer walks. I am worried about the walk today. I already feel light-headed. What if I just pass out in the middle of the walk and fall unconscious on the sidewalk?! I haven't passed-out since high school, so I suppose there is nothing to worry about.

It feels like there are bugs crawling over my head. My face is so sore!

Well, a little venting always helps.

The "twitching" was becoming really weird and annoying over the weekend, but seems a bit better today. I took a video of what was happening when I was trying to do a reading for a course I am taking (thank goodness it will be over soon). School is getting to be a little bit much for me right now, but I think this is the last course I need for my b.a.! Ah, there. See! I ended on a positive note :)

Saturday, November 20, 2010

Twitches are different now...

Needles to say... it is getting in the way of things.

Here is part of something I wrote with the intention of posting as a note on facebook, but have not, however may still, anyway:

In August an MRI revealed I have a Chiari Malformation (type 1), which is a herniation of the bottom part of the cerebellum (in back of the brain) into the spinal canal. At the time I had no idea what this meant, but have since been searching for answers. There is surgery available for Chiari Malformations, involving decompression of the neck and spinal cord, and removal of some bone at the base of the skull, and possibly the top vertebrae, and also possibly “shrinking” the herniation.

At first I was not eager to sign up for this, and the doctors did not seem to think all of my symptoms could be caused by the herniation. My symptoms have changed however since I last saw a neurosurgeon, and I am learning that neurosurgeons in Canada tend to have less knowledge of the mechanisms of the disorder and the range symptoms.

I have spoken to many other patients with symptoms like mine, and other symptoms that were unusual, who benefitted from surgery. The brain is intensely complex, and it is still not known what systems CM can affect. I am unsure at this point how to pursue treatment, but I plan to seek another neurosurgeon consult, and future MRIs. Unfortunately the advanced centers in the U.S. designed to treat this disorder are not covered by OHIP, so I am likely to pursue surgery in Ontario, but as I understand it will be considered “elective”, if I do not develop any secondary problems, such as a spinal cord cyst known as a syrinx, which is somewhat common with CM.

This is some of what my day was like today, and what it is like most days lately:

This morning when I woke up it felt as if I had been sleeping on top of rocks. My neck was so extremely tense, and the headache always hits really hard first thing. It is almost impossible to think of getting out of bed, but I know my body will just feel worse if I continue sleeping. As I sit upright it feels as if my head is full of sand that shifts from side to side as my brain adjusts to being upright. My face hurts. It always does, but it’s like I have to re-adjust to certain things in the morning, like sometimes in my dreams I’m not in pain. I sometimes really want to stay in my dreams. I never feel rested. When I stand on my feet they feel full of pins and needles. My muscles ache, so I move slowly. By the time I start to walk to the bathroom I start to notice the sense of vertigo that comes and goes throughout the day.

Every time I move my head it aches. My ears always feel full, and are often achy as well. My neck also hurts a lot, especially if I’m not careful how I move it. My neck cracks about 20-30 times throughout the day, or rather it stiffens up, I feel the need to stretch it, and then it cracks and I get a temporary relief of some of the pressure and tension.

When I take the dog for a walk I usually try to avoid hills, and I can’t walk very fast or for very long. Sometimes I will unintentionally over-exert myself while walking, and I will begin to feel dizzy, and a lot of pain in my head, neck, eyes, ears and face, as well as my legs and arms which will also start to feel weak, yet also tense up. I then begin to have trouble moving my legs correctly. More frequently lately, I have started twitching involuntarily when I exert myself. I usually find somewhere to sit down for awhile, or else I tough it out and make it home, although by this time I am surely walking “funny”. Sometimes I think people are noticing, but usually people are too absorbed in whatever they’re doing to notice much.

If I try to drive, I always get a more intensified headache. My neck also becomes more tight. I find it hard to turn my head to make the necessary movements and scans for driving. My neck cracks often while driving, and I have to rest my head on the head rest or my hand. Long trips are especially difficult and I have to make a lot of stops. I also get a lot of pain in my legs, hips, hands and shoulders, which can make driving difficult.

I have to got to bed at a decent time every night. If I don’t get 10-12 hrs. rest in bed, I am in more pain and more fatigued, and am more likely to start twitching, have more nausea than usual, and/or have more dizziness and hand tremors.

There are a lot of things I am not mentioning here, however I feel that I have said enough to make a point. I don’t enjoy talking about this. I find it necessary however, since I encounter more and more people who expect me to have a normal amount of energy for a 28 year-old, even after I tell them I have a neurological disorder.

I have had this diagnosis for a short time, and am doing my best to research as much as I can about it so I can make informed decisions about my future, however I am having a difficult enough time getting through the day-to-day. As I am writing this now, I am having to fight with my eyes to focus on the text; they want to blur. I can hear my heart beating in my head and there is recurrent ringing, hissing and “wooshing” sounds in my ears. It is all rather distracting and tiring. Of particular concern lately has been the twitching which makes it difficult to relax or focus on anything, but is not typically reported in CM cases. Anyhow, I will continue my self-directed research, and try to maintain some degree of “normalcy” and sanity in my life. I am still working part time, and finishing a course. But I have been cutting back shifts and missing classes, and am pretty overwhelmed to say the least. What also makes it difficult, is that to others I look “fine”, and not like someone who is “sick”. I am grateful that the problem might be treatable, and that I am still able to take care of myself for the most part, but there are those scary times when I’m not sure if I really can, or for how long. I’ve been trying too look at life as one day at a time, but It’s been day after day of struggling to get up the same hill, and it just keeps getting higher and steeper. (Sounds like a bad pop country song, but you get what I mean.)

I have found a lot of hope in connecting with other people with CM over the web. There are also a lot of really awesome websites. I don’t want to overwhelm, so this is the one I will admit I have been finding the most resourceful lately:

The ‘Education’ and ‘Awareness’ sections are particularly good to start with.

Saturday, August 28, 2010

I would if it weren't for my legs

Earlier today I was on facebook (which can be a bit of a bummer sometimes, since it means glimpsing into other people's lives, and all the things they are able to do and enjoy, while I just sit most of the time). I came across a discussion on my news feed involving a bunch of friends of mine, people I used to hang out with regularly, and how they are planning to go out dancing tonight. At first I thought of how nice it would be to see them, and didn't I wish I could just swing by. But my body can no longer handle being squished in crowds. I would surely regret any attempt made at dancing for at least 2 or 3 days following, and would expect more pain, stiffness and fatigue than usual. Not to mention the headache would worsen. It is constant and getting worse all the time, depending on the weather, or rather the pressure in the atmosphere. I need to get my rest more than anything, or else these things become more and more intolerable.
This morning I cried while trying to hang a picture frame that had fallen off the wall, cause of the pain in my left shoulder when I lifted it, and the tingling in my fingers, and the curling, and tensing up; the strange way I am beginning to hold my arm so I don't further injure it, almost cradling it, "t-rex arm", I've been calling it.
Today a stranger told me I am lucky to be young. People are always telling me I look great. I wish looks corresponded with feelings. Dani is always saying it would be great if all the parts of me that are sore turned purple, so the doctors would actually be concerned.
Less horrible than the pain, but also scary to think about are the parts of me I just can't feel as well as I used to, the way my feet fall asleep while I am standing on them, how parts of my skin are always slightly numb. Particularly my legs, as it feels like I am always wearing knee high stockings. I find myself confused by this, wondering how the feeling in my legs can just start to disappear like this. I wonder if it's worth it to hope that it could ever return.

Wednesday, August 25, 2010

Chiari 1 Malformation

They found something interesting. They say I have a Chiari 1 Malformation. This means that part of my cerebellum is herniating into my spinal canal. They say this may not explain all of my symptoms. There is a surgery for it, but I do not qualify for it at this time. Meaning, my symptoms are atypical of Chiari and they don't know if the surgery would help. Furthermore, they like to wait till you lose a lot of your independence and functioning before they cut open your head. I can still walk for up to 3 blocks at once, and I'm still managing to hold down a part time job, so I guess I'm doing ok, comparatively.

I feel as though I have a long road ahead of me still.

I do have a lot of headaches, well one all the time that gets worse at times. Tylenol doesn't help. Coffee helps. They say caffeine opens your blood vessels or something.

Anyway, it's all very thought provoking, but for now I'm going to take a break from doctor's appointments. I wish I felt like I could think properly. I hate thinking about this stuff, but it's hard to get it out of my head when I'm constantly reminded by the nagging symptoms. Of what... I'm not exactly sure. I worry about the times when things go numb, or all pins and needles, or when my hand gets to trembly and cramped up after I play guitar for a few minutes.

I suppose I have to think of what I still cando. I'm not wasting away yet. Things can always level out at some point and stop getting worse. Or, get better even. That would be nice.

Speaking of nice. I made a mini-vacation out of my last out of town doctor visit. That's always a good idea.

Monday, June 14, 2010

things I can no longer do with ease:

-walk down or up hill
-walk for more than a block or so
-stand for more than a few minutes
-play guitar
-open jars
-grasp things without dropping them
-bend to pick things up


I could go on but this is making me depressed. I guess I am just trying to re-assure myself that I am not crazy and there is actually something wrong with me, considering I am under 30, in constant pain, which is helped somewhat by prescription, although certainly not on bad days. I'm getting weaker all the time, and need another prescription to control intense muscle twitches that make it impossible to sleep without pills.

I got a call from the Ottawa Rehab Clinic today. They previously said they would see me based on my symptoms, without a diagnosis, as long as my doctor wrote a referral. I am getting less and less confident in my doctor. It sounds like all she wrote down for them was that I have weakness in my lower extremities. They couldn't do anything with that. Well duh. I wonder why she didn't include any of my other symptoms, or any of the possible diagnoses we are looking at.

She previously referred me to a quack neurologist who was convinced upon looking at me that I did not have a neurological disorder, ran a nerve conduction test, but would not run an EMG on me, because according to him EMGs are only for detecting nerve and/or muscle loss in "older" people with no symptoms, and because of the severity of my symptoms, I must have something else, not Charcot Marie Tooth, maybe arthritis or Fibromyalgia, or maybe I just need "more exercise". ...!!! Bullshit!!!

CMT type 2 runs in my family and it can be detected through EMG, but doesn't show on nerve conduction tests. I found this information within many peer-reviewed medical journals, and it is also even on wikipedia. If I have CMT it would be type 2 since it's in my family, not 1.... ARG.

Next week I am going to paid physio, where I am hoping they will not give me exercises that will make things worse, instead of an OHIP covered clinic which commonly treats people with problems like mine. I have an appointment with a CMT specialist in 6 months. They say they will do an EMG. It is taking so long because it is now considered a "second opinion". Balls.

Monday, May 17, 2010


time marches on

So I don't know if anyone is reading this, but it doesn't really matter. I like to have a space just for this. I am hoping to make connections with other people who can relate to these weird and frustrating health issues. Maybe there are people I already know who never talk about their pain. I'm sure there are several. What's with that? Why is it so taboo to talk about pain?

I have developed a 'tic'. I'm not sure what it is actually. Feels like a really intense muscle spasm involving my whole torso and left arm, and sometimes left leg. I have a prescription for it, which is helping. However, it still comes on throughout the day, usually when I'm trying to concentrate on schoolwork, or a little stressed out, or sleepy.

Anyway, next I will post a video of when it was pretty bad, before I started taking medication, which is Apo-Quetiapine, or Seroqueal. This was last Friday:

Arg. I have to go try to finnish an essay that was due several months ago. I need to get it done today, or I might loose my credit.

Boo, I want to keep writing.

Monday, March 15, 2010

...well, I've always been lazy but...

It takes a lot of focus to do physical things. Sometimes I lose focus and hurt myself, like I take on too much, lift something too heavy, twist the wrong way, forget to grab the railing while going down the stairs. Then I get pain, in various places (like muscles and joints {feet, ankles, knees, calves, thighs, hips, wrists, hands}), things starting to go numb (like thumbs and toes), and the pain accumulates quickly, and intensifies, and then I get extremely tired, and then a headache, and then I just need to rest till the end of the day. (This is while wearing knee braces which cut down on the knee pain, and tightly-laced boots, which cut down on the ankle pain, and orthotic inserts, which cut down on the foot pain and numbness.)

... I now have an excuse for being so damn lazy.

I found myself tabling an event for the women's and gender studies department today.

Quote of the day: "Let me tell you about how to have a fabulous career in bitching!!" I think that quote might be printed on a postcard somewhere. I personally know next to nothing about careers, having never had one.

Saturday, March 13, 2010

Trial and Error

So, I wonder if it will only be low moods that prompt me to write things down. What am I saying? Of course it will be. I will have to try to write when I am having good days too.

I am also wondering if today I will have enough energy to go for a short bike ride. Last year I could bike without problems or regrets for 3.5 to 4 hours. This year, it seems to be more like 10-20 minutes. Last Monday I rode my bike to my doctor's appointment. It was incredibly freeing. Since sometime in January, I haven't been able to walk for very long without a lot of pain and fatigue. So, the 20 minute ride was fine, and that felt really encouraging. I had to walk up the hill, but that's ok. On the way back though, I got on the wrong side of the canal. I think I make this mistake at least once every year. However, this year, the 45 extra minutes kinda killed me, and I was still paying for it 2 or 3 days later. So one of the challenges is figuring out stuff like this. My body seems to have very delicate limits set on how much physical activity it can handle.

I wish I would get a call from the neurologist. I have been planning to just call them myself, since they are taking awhile to call me. but I was waiting for a confident day, and now it's Saturday. I also don't want to annoy them. I just want to tell them I'm available, and I'll get there if there's ever a cancellation.

My ...girlfriend(?), rodeo partner(?)... I never know what to say. She lives with me, and we're in a relationship. Anyway, we'll just call her D. D just came back from a walk with the dog, and brought me a chocolate bar. So there's a reason to be in a better mood. D and I have both been having a hard time walking the dog, so I'm glad she wanted to this morning. D went to the hospital emergency clinic yesterday, and they sent her home with pain killers that made her sick all night. So anyway, we are both having some troubles. The ER doctor said her case is a "medical mystery".

They are going to test me for Charcot Marie Tooth disease. My grandma had it, and it's apparently highly inheritable, and a lot of my symptoms seem relevant. Now I'm worried about my Mom getting it. The doctor scared me when she asked if I had noticed any muscle wasting as she measured me legs in various places. But the other day I read an article that suggested this doesn't seem to happen in patients who develop symptoms after their bodies are done growing, only in people who start noticing symptoms when they're children. So if this is what it is, I would probably have one of the less severe cases. Also, I have found several inspiring things on the internet about people who have this condition and lead full, happy and productive lives. So, if that's what it is, I think I'll be ok with hearing it. I haven't gotten any other leads so far. I guess if it's not CMT, they'll suggest other tests and things, but I am wondering what those things could be. Doc said Fibromyalgia a couple times before she researched CMT, but when I look up the symptoms online, it doesn't seem to make sense to me.

Wednesday, March 10, 2010

Out of the Loop

This blog as an attempt at remedying my recent loss of ability to write in my beloved journal. Well, I can still write a little, but it hurts and it's slow and difficult. I can type with little difficulty. It seems to be my grip that is weakening.

I am in the midst of a crisis involving ongoing pain, frequent trips to the doctor, and difficulty getting around, walking, using my hands, feet, and legs. This has been going on for a couple of months, but I think there were signs earlier on. I am currently on a wait list to see a neurologist. I am 28 years old.

I am trying to find satisfaction in focussing on the things I can do, but many days I am stuck thinking about all the things I am missing out on, and all the things I took for granted before I developed these problems. I am starting to feel as though I can't keep up with the life I want to have. I am starting to become jealous of my friends who are still young and participating in things I would like to be more of a part of. I am starting to feel out of the loop. So, I am going to try to start a new loop with a focus on coping, carrying on, and getting the most out of life.