symptom update

I haven’t made a post in quite awhile. It has been a crazy summer. I’ve moved three times in the past 5 months! It was so not planned that way, but when you are on a limited income it can be kind of hard to find and keep a decent place to live. So I finally have a great apartment with an awesome roommate and we just got internet. I feel human again finally having the internet back. What does that say about humans? 

I’m going to mostly talk about symptoms today, but at a later time I’d like to share my perspective on some of the problems with the health care system, in terms of lack access to appropriate treatment for patients with EDS and Chiari Malformation, as well as for other patients with debilitating and painful conditions. 

It was a rough night last night. It was hard to write in my symptom journal (which I try to update regularly) when I was in all that pain, but I think it’s important to keep a record of these things. Here is a snapshot of some of what I was dealing with:

before bed took 300mg Gabapentin, 25mg Quetiapine

11 pm:

pain in neck, left side, extremely tight muscles 

burning pain traveling up back of head

headache, frontal 

feeling of pressure in back 

frontal headache, worsened with coughing

strange beeping in ears

lots of twitching 

pretty bad headache

sore legs

lower back

pain and twitching is making sleep difficult

12:30pm: 

really intense back and leg and abdomen pain

almost indescribable

burning pulling aching fire

really quite painful

pain is a 10.. 11.. 12

pressure in tailbone/bowel area

feels like have to urinate and 

move bowels but can’t do either

impossible to sleep

took 10mg of Flexeril

pain wore off gradually

asleep by aprx. 2am

The headache and neck pain issues are a daily occurrence, and so is the leg and lower back pain, but I don’t think it’s ever been quite so intense as last night. I’ve had some weird episodes, but this was pretty crazy. I couldn’t get comfortable in any position. I couldn’t even stay still or stop whimpering. I eventually was able to do some deep breathing, and it seemed to help a little. I am glad I didn’t wake up my roommate. I’m not sure if the medication helped, or if it just wore off gradually. 

I have been taking videos of my “twitches”. I’m not sure what they are, or why they happen. I still haven’t managed to get a doctor to look at these videos. I put them on CD and brought them to my last neurologist appointment, but the guy’s computer was a dinosaur (and so was he kinda), and he couldn’t play the videos. He told me most people show him on their iphone. Am I the only one left who doesn’t have an iphone?

Anyway, I’ll include a ink. They tend to start off as slow jerks and then progress to a sort of shaking and convulsing sort of thing. Maybe someone out there will know what these are and how to control them better. I don’t think my current medications are quite cutting it. People have told me it can be a little hard to watch. It’s my reality, but don’t watch it if you think it might bother you. 

http://www.youtube.com/watch?v=l8Spkc2OrjE

Thanks for listening, and I hope everyone is having a great day, and I hope all my Chiari and EDS buddies are hanging in there and doing okay. The one wonderful thing about all of this is that I have met some amazing people who are dealing with similar issues. It is not nearly so bad when you realize you're not alone. 

my left elbow and my heart rate

Ha ha. I had to post these pictures of my left elbow. They are too weird! I don't know if it always bent backwards this much, but it is definitely bendier than the right, which is also rather bendy, but not as interesting to look at. In the second photo I may have bent it too much, which is really bad for my joints, but I find it's hard to know my limits sometimes. It's more a case of trial and error.  

Anyway, my heart rate is totally unrelated to my left elbow. Ha ha. Sorry for any confusion. I borrowed a heart rate monitoring gadget from the kinesiologist at the health center, and holy crap does my heart beat fast! We first took my heart rate today while I was on the exercise bike with very slight resistance. It started at 120bpm or so and shot up to 190 within 5 minutes! He gave me the doo-hicky to borrow for a week. I am finding today it's around 100-110 when I'm lying down, 120-130 while sitting, 130-150 while standing and it was up to 178 when I got to the top of the stair case (1 flight of stairs)! 

And now for the anxiety question (which is not really mine, but more my doctor's and my counsellor's), I have not encountered many stressful situations today, other than leaving a voicemail with Ontario works, and trying to parallel park, but it didn't go up significantly in those situations. So it's hard to tell if stress is a factor on my heart palpitations. It may very well be, but it is not the only factor for sure. 

The kinesiologist thought this was all very interesting, so he wrote a note to my doctor to ask for a stress test, so I am pleased with that! This heart rate thingy is kinda fun. I like gadgets :)

symptom journal

Feb/27/11

Dear blog,

I am writing you from the bush again. And the post will be delayed, as it is no fun attempting to use painfully slow dial-up internet that runs under the lake. Mom and Dad have some good dvd’s, but there’s only so many times you can watch seasons 1 & 3 of Big Bang Theory, Aeon Flux (the movie) and Fargo. So I end up writing rather than watching hours of video streaming. It’s probably a good thing.

If I can remember correctly (ha. my memory sucks!), one of my new year’s resolutions was to keep a symptom journal. Wait, I’m sure it was a resolution of mine. I should write them down! Anyway, I haven’t remembered to keep up the symptom journal. I seem to have a couple entries from December. I guess that’s a start, but I should really continue!

Keeping a symptom journal would help me keep track of things. My complaints are so varied and ever-changing that it makes me feel a little nuts when I am trying to put it all together in my head so I can properly explain to doctors... and interested others.

In December I had a lot of symptoms I still experience today. One interesting thing I wrote down in December was that I have headaches that worsen, or are brought on much more intensely, when I bend over or look down. I still have those. I have at least a dull to moderate headache at ALL TIMES, so it is difficult for me to know how respond when doctors ask what brings on my headaches.  

Anyway, my fellow EDS and Chiari friend Kristen who I finally met in person the other day (It was so cool to actually meet her! I had never met anyone else with known Chiari or EDS!) ...Anyway, Kristen mentioned that when I have nystagmus (uncontrollable eye movements) when I look down, it may be due to cranial settling and the added pressure put on the brain and brainstem that can brought on with position changes in EDS/Chiari patients. So of course, I am now wondering about those headaches that come on much stronger when I look down, and the potential cause of cranial settling. I realized not too long ago that if I lay down my headaches are almost always greatly improved within a few minutes. So, a lot of times when I have a headache I lay down, makes sense. But then I think I’m better and I sit up, and it comes back with a vengeance! ...So I lay down again. At least I figured this out! And my headaches are also better when I place my hands under the base of my skull and my jaw and pull upward. I have also read/heard that this can be a sign of cranial settling. I even have ringing in my ears that will disappear when I pull on my head!

Thankfully, laying down no longer brings on twitching (well, once in  a blue moon). I think I have Lyrica to thank for that. It was a bit of a problem trying to lay down to relieve the headaches only to start twitching all over the place. And twitching can aggravate a headache, so it was confusing. In December, I wrote a lot about the twitching/convulsing/myoclonus/whatever you want to call it! I don’t have it nearly as much anymore, and it used to happen every day, sometimes multiple times a day.

Here’s a new/worsening symptom I did not mention in December, perhaps because it is embarrassing: I have to pee a lot!! At least 12 or more times a day. I have to pee right now. I didn’t until I sat up. For the last hour or so I have been either laying or standing, and then I sat for a few minutes and I had the sudden urge to pee. The other day I bent over and had the sudden urge to pee! ...I’ll be right back... ha ha... guess where I’m going! Ok, so I am always thirsty and I do drink a lot, although nothing alcoholic and rarely anything caffeinated. But even considering all the liquid I consume, I don’t understand the frequency or urgency at which I have to urinate. It doesn’t seem to make sense. I am wondering if this may be a symptom of Occult Tethered Spinal Cord, which is common with EDS and Chiari, but is a controversial subjects since many doctors believe if you can’t see a tethered cord on an MRI, it’s not tethered. However, patients with Occult (meaning invisible to MRI technology) Tethered Cord often respond well to de-tethering surgery. I wonder if some of my leg symptoms, like the reduced sensation and numbness in my lower legs, and the weakness that comes on with walking, could have to do with a tethered cord. I also get intense cramping in my calves and thighs that’s unlike pain anywhere else in my body. When I first started scouring the internet for clues to a diagnosis, I came across peripheral neuropathy. I thought that had to be it. It seemed match almost all of my initial symptoms. And oddly my Grandmother was diagnosed with Charcot Marie Tooth hereditary peripheral neuropathy, and I thought that had to be my answer. But I’ve been to 2 neurologists and it seems pretty clear that I don’t have it. However, when I was first searching I also came across Tethered Spinal Cord, which seems to have some symptoms in common with CMT. But I ruled it out since it is supposed to show up in childhood. But this is not typically the case with Occult tethered cord patients, who often have EDS.

If you want to learn more about the relationship between EDS, Chiari, and Occult (meaning invisible to MRI technology) Tethered Cord, there are educational videos available for streaming at http://www.chiariinstitute.com/Videos/index.html

This blog entry will double as my latest symptom journal entry. Although, I will not cover all of my symptoms. It would take too long

It is frustrating having to wade through all of this myself, still having little guidance from doctors. Yes, the geneticist I saw made the EDS diagnosis and knew a couple of things about EDS and Chiari, she was certainly no expert on the relationship between the two, it being poorly understood in general. There are only a few doctors in the entire world who have extensive research-based knowledge on this topic. What I’m getting at is... no one in the medical profession, in this country, that I can find, has any background in treating patients with both Chiari and EDS, and no one can offer me much help with research, and planning a course of treatment and management, so I have to do a lot of my own research or else I won’t know much at all about what’s happening to my body, and I need to know! What I’m wondering now is how are other patients managing?! There’s got to be a few of us with EDS and Chiari in Canada. What does everyone do to cope with the lack of knowledge and understanding? The types of surgeries available for Chiari in Canada are typically very unsuccessful in EDS patients. There are successful surgeries being performed just across the border in the U.S., but those surgeries are highly inaccessible to Canadians because they cost as much as a house, and I know OHIP is highly unlikely to foot the bill, being on the side of Ontario doctors. Canadian neurosurgeons think a lot differently than some of the more progressive American neurosurgeons. Older, cookie-cutter type surgical methods seem to be much preferred over newer and innovative ones, designed to fit each patient individually. Most patients with Chiari don’t have EDS (although many are probably undiagnosed!) so surgeries are not designed to fit EDS patients and often fail horribly.

*sigh*

At this point I am skeptical that any kind of surgery would be a good idea. I just don’t know. I have basically no options anyway. I just hope that some day I will understand how all these symptoms are interacting, and have a clearer picture of how surgery may or may not help. What sucks is I know I am declining in some ways. Despite benefits from Lyrica and acupuncture, I am having a harder time with the pain in my joints, especially in my neck and shoulders, and my headaches are really getting in the way of life. 

I wonder if anyone can really “fix” this. ...ever. 

But anyway, the Lyrica seems to offer sort of a band-aid for a lot of symptoms. Looking back, I had a lot of symptoms in December I am not having nearly as much these days. A lot of the particularly aggravating nerve-type pains seem much better lately, and somehow my balance is a lot better! ...? ...Weird. Maybe because Lyrica is an anti-convulsant and wobbling while walking often brought out a tremor, the tremors and the twitching and the balance are somehow connected? ...I hardly ever get hand tremors any more. I used to get them almost every day. I don’t know what is up with my left hand, but it is not as bad as before. It is much less sore and no longer tensed up and shaky. However, I think it is permanently weakened. I can’t type anymore without contorting it in a strange way so my finger joints are arched upward above my hand, while my right hand is totally relaxed while typing.

Kristen referred to surgery as a “big band-aid”. I guess you really have to weigh the pros and cons, and you are always taking some level of risk, but there is the potential that it could be very helpful, if done correctly and appropriately. 

Feb/28/11

Dear blog,
Note to self: Do not try yoga poses that involve putting all your weight on one leg! Your ankles will kill you later! Also try to avoid moves that involve putting a lot of weight on your wrists, knees and shoulders; the joints on left side of your body in particular. If you’re going to try any of this again, at least wear some braces! Every time you participate in a yoga class you hurt the same joints again that are already weak and unstable. Don’t be afraid to sit it out or wear some braces. Stop being afraid of what people think. Stop trying to do everything you used to do. You have to adjust.

Ok, I'm done talking to myself! I had a good day today (despite the yoga injuries)! My headache was mild most of the day. I was able to get a lot of activities in, rather than a lot of laying on the couch like the past few days. The headache was so bad over the weekend, I just had to lay down most of the day. I couldn’t handle reading, talking or writing. I watched some Big Bang Theory. If I thought I could’ve slept through the headache, I would’ve tried, but I find it is better to distract myself with some light television. If I try to nap, sometimes I get so focused on the pain it makes me start crying, and crying just makes the headache worse most of the time. 

But not today! I’m sore and my body is tired, but my headache is still barely there. It was worse while riding in a vehicle. It was pretty bad at one point in my left temple, while on the dirt road. But then it got better again!

My left hand is working really well today! it is not tensing up at all, and it’s more relaxed while typing! Like, I notice a big difference since yesterday! Why? I don’t know! Oh well! I actually thought it was permanently damaged! I guess not! 

I was a bit winded while walking the dog around the property and at times during yoga, but almost no dizziness or light headed-ness today!

I think the yoga is good for me in a lot of ways, just too hard on my joints sometimes!

My toes turned a little purple with bluish areas in yoga. I got really sweaty over a few simple stretches and warrior poses. 

My eyes were darting from side to side on their own while I was typing just now. It kept happening and was getting in the way of my concentration. I was a little slumped in my seat, so I thought maybe if I re-position my head... and there you go! They’ve stopped moving on their own!

I don’t get the shooting pains I used to, and the pan in my face is much less intense lately. It feels less like it is traveling around like it did before. It stays in my cheek bone area most of the time. I don’t get as many bizarre episodes of pins and needles in my hands and feet as I used to. I get pins and needles more if I move something awkwardly and it pinches something, which I would imagine happens frequently to a lot of people. I get it more than I used to... before I was “unwell” or whatever, but it’s different than the sensations I was experiencing a few months ago, which were strange and moved around a lot for no understandable reason. I used to have a lot of pain and weird sensations all over my body, weird moving pain and tingling. I think it was nerve pain. I still get it a little from time to time, but it is much much less.

My earaches have been much better as well! I get them a little, often with a bad headache, but not for week or so. The ringing in my ears has gotten much less over the last while as well!

There it goes again! My eyes keep moving from side to side when I look at the keyboard! And then I look at the screen and it stops! So weird!

Oh yeah. I think I am developing some sort of dyslexia. I didn’t think it was possible. I will sit and stare at a word I have typed with a spellcheck red underline, and I’ll read it over and over for about 30 seconds before I realize it’s something like “moist” only I’ve spelled it with the “i” before the “o”. Maybe this just means I’m getting stupider and worse at spelling. Or maybe I am crazy. 

Oh, and my legs are still somewhat numb from the knees down like they have been for a year. They are not completely numb. I have feeling, but it is not like it used to be, and it is not like other areas of my body. It is a loss of sensation. It feels as though I am wearing a pair of thin knee-high stockings all the time. And my feet get numb when they are cold, even if I insulate them with thick wool socks. When I take my socks off after being out in the cold. I often get an episode of Raynaud’s phenomenon.

There go my eyes again! Moving on their own! I keep having to glance at the keys because I got a C+ in keyboarding class and never learned to type properly!

Ehlers Danlos Syndrome

I wrote this next entry while I was at my parent's house and am just getting around to posting it now. They have dial up and the internet runs under the lake! It is almost impossible to do anything on the internet while I'm there! So here it is:

Feb. 7. 2011

Today a geneticist told me I have Ehlers Danlos Syndrome (hype-mobile type). I have actually been expecting this diagnosis, but really wasn’t expecting it so soon. I have been shuffled from specialist to specialist, none so far being specialists in any of my particular symptoms and disorders. I was bracing myself for another round of interrogation followed by confused looks, and disappointment, probably on both sides; the patient who can’t be helped and the doctor who can’t help the patient. Most doctors I’ve seen have seemed quite baffled by my symptoms, and many times I have felt they are convinced I am either imagining them or making them up for the sake of some kind of twisted attention seeking game. Today was the first time I’ve met a doctor who actually said she’d seen people like me before. Although I am not without skepticism regarding some of the things she may have said, many things she said were encouraging. This is the first specialist appointment that did not result in tears sometime later that day. I can give some of the credit to myself of course! I am growing a thicker skin! 

Anyway, so what does this mean? Well, for one thing it means the aches and pains all over my body, which have become so familiar at this point it would be strange to live without them, have a detectable root cause. EDS is a group of disorders of connective tissue, or more specifically of the collagen that makes up the connective tissues in various parts of the body. In EDS, some of the genes that produce collagen are absent from the DNA. There are six major types of EDS. The hyper-mobile type is one of the more common types. The diagnosis was made based on a clinical exam, and evaluation of my symptoms as well as my medical and family history. My hyper-mobility was tested using the Beighton Score, on which I scored a 9 out of 9. And although I do get some strange bruising at times, my skin feels and looks “normal”, so I am not likely to have the classical type of EDS. The doctor said she did not see a reason to order genetic testing since several different genes can be responsible for EDS in different people, and it is sometimes difficult to locate the defective genes, and DNA testing is not needed to confirm the diagnosis in my particular case. She also said although there are several different types of EDS, there are over-lapping symptoms between the types, and individual variations. So although the hyper-mobile type is known to affect mainly the joints, I may have some involvement of  other bodily systems, which may be why I have strange bruising, Raynaud’s phenomenon, and a tear in my right retina. I am a novice at understanding EDS, but I get the impression that it is like Chiari Malformation in that it is not well understood by the medical field, and that there are disputes and controversies between and among those professionals who deal with it. 

Speaking of Chiari Malformation, oh boy, are there ever a lot of confusions and differing theories surrounding how the two disorders are linked, and how they interact in those who are affected with both EDS and Chiari. I will get into that more later.

A diagnosis of EDS also means I have more information to add to this huge puzzle I am putting together that is my life and health. I can bring this diagnosis to the kinesiologist who is helping me design my exercise routine, to my GP, and even to my Ontario Works/ODSP case worker, and it will likely help them all better figure out what to do with me. Ha ha, more work for them. However, I am going to keep using the word Fibromyalgia in some instances. It is one many people have heard before, and it is sometimes easier to for people to relate to and get a grasp of. I still fit the diagnostic criteria for FM even though the EDS is likely the cause of it. I have read Chiari can also cause Fibromyalgia symptoms. When something is a diagnosis of exclusion and the diagnostic criteria are loose, how do we know when we have it or don’t have it? I suspect other people with Fibromyalgia are suffering from other yet-to-be discovered or yet-to-be well understood musculoskeletal or neurological disorders. 

The geneticist is at least aware of the connection between EDS and Chiari, but she seems conservative in her ideas of appropriate ways to treat patients with both Chiari and EDS. There is some cutting-edge research going on, and new surgeries being designed specific to EDS/Chiari patients in places, such as The Chiari Institute, that are inaccessible to me since I’m in blasted Canada. Nonetheless, the geneticist says she is going to talk to some of her neurosurgeon “buddies” and see about ordering me some more MRIs and cerebral spinal fluid (CSF) flow tests. A CSF flow study may let me know if there is a blockage in my CSF flow, which would indicate that decompression surgery might benefit me, since a main objective of the surgery is to make more room for the CSF to flow properly. Again, I’m skeptical since MRIs are done while your laying down, and I keep reading that with EDS the internal tissues and structures shift with movement from a laying down to an upright position, and a herniation of the cerebellar tonsils (a Chiari Malformation) that is allowing for normal CSF flow while laying can plug the CSF space while sitting. The geneticist said she wasn’t aware of the availability of upright MRIs and I said I heard there is only one and it’s in Vancouver and there’s like a 10 year wait, and we laughed about it... but I wasn’t joking, they really do seem impossible to get! She said that doesn’t mean they can’t ask me to change the position of my head while in the machine to see if it changes things, as in a forward, or backward tilt, etc. I kind of wonder if she was sort of talking out her ass, but I appreciate the gesture. I think she is planning on talking to some neurosurgeons and radiologists and seeing what can be done. 

As I was saying, I was not expecting to get a diagnosis of EDS today, because that would’ve been too easy. I figured I would see this geneticist today, and she’d shrug at me like the rheumatologist, and the neurosurgeon, and the neurologists, and then I’d be off to the States to shell out several hundred bucks to an American geneticist to get the EDS diagnosis and discuss how to manage and treat the combined symptoms of Chiari and EDS. but I actually talked to a Canadian geneticist about the Chiari-EDS relationship, and she was aware of it’s existence!! She said a lot of people with EDS have Chiari malformations, but the key is determining what’s causing a problem, and what may just be a natural variation, and I was thinking: My brains are herniated almost 2cm (18mm exactly) into my spinal canal; how can that be a natural variation? People have Chiari Symptoms with less than 2mm herniations. I have read that EDS can cause instability of the head on the neck and lead to something called cranial settling which means the head is sinking onto the neck, and that may be why the brain herniates. 

Anyway!!! It was a weird day. There’s a lot to process. I am up for any tests they can run which might give me some more insight as to just what might be going on inside my body. 

It was kind of funny when the doctor said she had a foot fetish and could I please remove my socks. It was also funny the way she was staring at me and sizing me up the whole time, and how she said she liked to pinch people (to see how their skin felt of course). It was “This is what I do in my clinic, I pinch people”, or something like that. What a strange woman. Doctors are all a bunch of weirdos! What do they do for fun? Are they all over-worked and going crazy?

...I shouldn’t talk. I have some pretty weird and crazy friends. What does that say about me? Ha ha.

-KBM

some people's children

Dani thinks this was a wasted effort, but I don't care. A comment posted by me on youtube:

"Dear witchdude123,

In response to your comment which read "you have fucking issues" that you posted on my twitches video, I'd just like to say that perhaps you are the one with "issues". For your information, I am suffering from a serious neurological disorder called Chiari Malformation. Maybe you can look it up so you can learn something instead of posting hateful comments. I use yotube as a platform for seeking help and advice for my medical problems. It saddens me that a child can have so much hate for sick people. I really hope you don't grow up to be an asshole, but I'm concerned it might be too late."

LOL!

The rapid heart rate question

Wed. Jan. 19, 2011

I certainly didn't expect, at my age, I'd have to sit down and rest after climbing one flight of stairs. It's sort of funny, I think I didn't know how to relax before. I was one of those people who take on to much sometimes. Now, I am being forced by my body to relax. Ha!

I live on the 2nd floor, and anytime I need to go downstairs for anything, I have to strategize carefully. I frequently forget things at the bottom of the stairs where I take off my coat and shoes and end up kind of kicking myself, because it takes a chunk of time out of my day when I have to go down or up. Down used to be the worst, because I was always afraid I was going to fall forward. Now, I have gotten used to the dizziness and don't fear falling as much, but the "winded", light-headed, heart pounding a mile a minute feeling I often experience when nearing the top of the stairs is the worst. I'm sitting here now because I was in the middle of sorting laundry and forgot something downstairs and had to go get it, and then I had to sit down. But at least I am in the mood to sort laundry. My headache has been pretty mild, meaning tolerable and not debilitating as it can be, for the last few days, and I've gotten a lot done! And yesterday after acupuncture I felt great! I actually did some stretches and leg lifts in the afternoon, and then we went to see a movie! I haven't been to a movie in months. There have been so many times Dani and I have planned to see a movie, and I've bailed cause of my headache. We saw TRON. It was pretty entertaining and I had a great time, but what was with those suits? How are you supposed to get away from the bad guy in a glowing suit that practically serves as a beacon? Why didn't they turn their suits off when they were trying to avoid getting killed? I guess it wouldn't have been as cool. *eye roll* So anyway, I can't complain! I've sat long enough now. Off to do laundry!
...
Fri. Jan. 21, 2011

I am in the middle of a battle of wills with my GP and all the other health care professionals I am currently seeing. They seem to keep pointing to the "anxiety" label whenever I bring up these concerns about rapid heart rate brought on by exertion, accompanied by lower extremity "weakness", shortness of breath, dizziness, intensified headache, and the overwhelming need to sit down, even if my only available choice is to sit on a curb. I might be a few meters away from my home, but I'll still need to sit somewhere in order to regain my balance and allow my heart rate to return to normal. I used to have "panic attacks", and then they stopped for years. Here I was thinking I had conquered them through cognitive behavioral therapy, but they are back! However, I wonder if they were ever truly "panic attacks". It definitely helps to try to relax and center myself while these attacks are happening, but I am absolutely certain that they are triggered more by exertion and the act of standing and walking rather than by stressful events.

My GP is sending me for another resting ECG (electrocardiogram). *Sigh*. I am sure it will turn up nothing as my heart rate doesn't sky-rocket to 140 bpm when I'm resting! It happens when I exert myself, but only slight exertion will do it. Taking out the garbage (light-weight garbage btw, less than 15lb) should not make your heart rate jump 50bpm unless there is something wrong, and that something wrong, that happens when I stand and walk is probably not going to show on a resting test! Arg. I suppose I will just follow the protocol and bug her some more about it after the results come in. Maybe they can try some different tests after this that are more likely to show results. I hope someone other than me sees what's really going on soon.

...more

Did I mention I also had dinner made for me and delivered to me on a couch this week? And it was burritos. Gave me horrible gas, as many things do, but man was it worth it. Did you know you can infuse beans with bacon juice, not grease, juice? I dunno, it was darn delicious.

more things to say

So, I posted something today, but I wrote it awhile ago... I'm just that disorganized. Well, I am used to know one reading my journal, but I am starting to prefer this public form of venting. So anyway, I think I'll write something else.

I had a meeting with a crisis counsellor today. She gave me a piece of paper with the number to call someone locally to talk about Ontario disability support. There. I found a good reason to go to a counsellor, even though I feel some resistance to going, because my doctor thinks I need to talk about "anxiety". Yes, I'll admit I have anxiety at times. Anyone in my situation would experience anxiety, or depression or something of that sort, so fine. My rapid-heart-rate episodes are triggered by things like standing and walking around, rather than stressful events, NOT anxiety, but fine. This might be good.

It's funny when someone hands you a piece of paper and tells you to do something that you knew you had to do already, and how it is so valuable sometimes to just have the support to do the right thing for yourself. When I got home I found my friend online, Kristen, who gave me the additional support I needed to just go ahead, as well as the advice I needed that with my Chiari Malformation diagnosis, it will probably take a lot of time, because conditions that are not well understood like this often face problems accessing ODSP.

...

Pang of guilt: My Mother was always the chatty one. I would call and she would chat on and on. Now, I'm the chatty one. Why don't I ever call just to listen anymore? Oh good, I can talk to the counsellor about guilt too.

...

There is a loss of a sense of self, or a part of identity that one may have once had that can come with having to ask for help. I worry how I will let it roll over me, or how it will sink in, that I don't really have that thing attached to me at the moment called a "job". This kind of hit me while I was trying to finnish up my last couple semesters of school (part time) while I tried to keep a part-time job, and essentially hide, though I was never shy, the fact that I was going through something rather fierce that was dominating my body in all sorts of ways. I sometimes look at people around me and think: Gee, what's it like to stand around on a curb, drunk and freezing late at night with a bunch of friends or people or whatever? Wow, what's it like going out with people from work? What's it like having random encounters? I don't really remember sometimes. All I have to talk about is how it's hard to sit anywhere for any amount of time if I can't lean my head against something, and how much I love my new cushy bath pillow and bath matt. Sometimes I think I'm living in a different universe than everyone else. Sometimes I think: Where am I?

Part of what I was trying to get at the other day when I mentioned my talk with my friend on skype was that thinking you are loosing yourself, and then realizing there are other people experiencing very similar, yet unique, things is one positive out of all of this. And what really makes it seem manageable at times. And it's amazing how tough people can be sometimes. And it's amazing how people manage to have a sense of humor! The weirdest things are funny to me these days.

I am thinking where am I? What universe is this? Where am I going? And then I notice there are others sort of "here" too.

Some people even seem to want to visit my universe, or maybe they are already part of it. I like it when friends drop by spontaneously to eat Greek On Wheels. Just a hint. No not really, but yes why not, please everyone come bearing Greek On Wheels. It happened today anyway. Nick is a thoughtful guy, and he brought Derik. Tiff was having a girls night. Dani is out right now. It's kinda lonely. She doesn't go out often. But Emmet is putting on The Emmet Show, and bringing me a purple mouse and doing back flips. No, I'm not on hallucinogens. Emmet is our cat. He is quite acrobatic.

friends, feet, and fantastic people

Some recent excerpts from my personal journal:

Tues. Jan.11, 2011

It’s awfully nice to have people in your life who will actually physically carry you home, even though it was your bright idea to try to walk to a diner that ended up being just a little too far. That sure was a nice way to start off the new year.

In my search to find ways to communicate better to friends I found something called “Spoon Theory”:

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

Or, maybe I just stumbled upon it while looking for something else. I actually found it on another Chiairi sufferer’s blog, but it was written by a young woman with Lupus named Christine.

I was talking to a friend on skype today, who has Chiari and a number of other health concerns, and I had a moment while I almost felt like Christine’s friend on the other side of the table. Like I was clinging tightly to all my spoons, and couldn’t bear the thought of loosing just more. And I thought for a second, if you’re operating at a 40 or 50 on the Karnofsky scale (http://www.hospicepatients.org/karnofsky.html), and I’m sitting over here at like a 70 so, how the heck are you doing it?! And then I sat for awhile, and complained to my Mom and girlfriend about my aches and pains, etc., and then I thought: I have had moments before, where I wondered how I would function emotionally when I was no longer able to work, and when I wasn’t able to cook for myself properly (but I can still operate a microwave!, and the stove on a good day, but not so fun when I can’t stand or sit without resting my head for long with out a lot of pain, fatigue and dizziness). Anyway, I’m OK. I’m still here! I’ve been having a string of bad days, and I’ve been pretty gloomy about it, but if you can sit there and smile, I’ll be OK! I guess I’ve been rather down about the thought of surgery not being such a viable option for me at the moment, and how much longer I may have to wait to even get to speak to a doctor who understands my medical problems. But you’ve been doing this for years already, dealing with doctors who don’t understand, and doing everything imaginable to try to get to the ones who do. And there have been some successes! It is perhaps my Mother’s voice in my head that requires me to consider the sometimes sickeningly optimistic, but there are always positives to be found. People do survive through Chiari and other serious health nightmares, and come out the other side, though there never really is another side, to be extremely enlightened, courageous and remarkable! 

Dear friend, I am amazed by your strength! I’m so happy to know you :)

. . .

Wed. Jan.12, 2011
Dear right foot, why did it have to be you? You are on my good leg after all and I need you to walk. Maybe I have been relying on you too much, compensating for my messed up left knee for years. But right foot, you are supposed to be the strong one! Why is your middle toe all swollen and red? Why does it look like a little pink sausage? Why does this have to be so un-noticeable to anyone but me? Yes, all my toes always look a little like pink sausages. But this one right middle toe is really messed up! It hurts so much to put pressure on it. I hate having to walk on it. Right foot, please smarten up; stop hurting me! they can’t fix what’s wrong anyway.

Oh, how my neck hates to hold up my head.

*********************************Wait!!! I’m not done yet!**********************************

Look! A Chiari-specific “Do’s and Don’t” list to complement “Spoon Theory”:

{Stolen from: http://chiariwarrior.webs.com/}

"The Do's and Don'ts when Dealing with Someone with Chiari Malformation
  

1. Don't assume because I look well that I feel well.  Looks can be very deceiving.  Many days I look good but feel terrible

2. Don't tell me that you know how I feel.  No one knows how anyone else feels.  Two people with the same disease may feel totoally different.

3. We all have various pain threatholds of pain and pain cannot be measured

4. Please please don't tell me "it could be worse"...yes I know it could be, but I don't need to be reminded

5. Don't decide what I am capable of doing.  Allow me decide what activites I can participate in.  There maybe be times when I make the wrong decision and if I do I will know soon enough.

6. Don't be upset that you can't ease my problems.  It won't do any good for both of us to be miserable

7. Don't as me how I feel unless you REALLY want to know.  You may hear a lot more than you are prepared to hear.

8. Don't assume that because I  did a certain activity today that I can do it tomorrow.  Chiari is ever-changing.

9. Do learn everything you can about the disease because the more you know the better equipped you will be to know what to expect.

10. De realize that I am angry and frustrated at the disease...not with you.

11. Do let me know that you are available to help me when I ask.  I'll be greatful.

12. Do offer me lots of hugs and encouragement

13. Do understand why I cancel plans at the last minute.  I never know from one day to the next how I will feel.  Chiari is just like that.

14. Do continue to invite me to all activities.  Just because I cannot bike ride with the gang doesn't mean I cannot meet you for the picnic at the end of the trip.  Please let me decide."

VENTING

ARG!!!!! I wish I didn't just have to spend the morning at the clinic, having just been there 2 days ago. My doctor there is actually really great, but it wasn't her I saw today. I had a referral sitting at the CHEO genetics department for months from Dr. C who I saw at a private clinic in Toronto in May. Dr. C no longer works at the private clinic, and there is no way for me to get a hold of him. My Mother was initially told by a genetics nurse in North Bay that I could have an appointment to see a colleague of a geneticist she saw a few months ago, who is actually a Dr. at CHEO, but is going to North Bay this February. Anyway, so I was supposed to be able to use the old referral from Dr. C, since it's the same geneticist, but then apparently that changed somehow, and they now need a new referral from my current Dr. (Dr. M, the one I said is great, she is), but the appointment they are holding for me at the genetics clinic in North Bay is this coming February 7th, a month from today. If this doesn't work out I will have to wait A YEAR to see Dr. N, or some other geneticist through CHEO. The reason I even want to see a geneticist in Canada is really so that I can eventually get the OHIP approval to see one who specializes in connective tissue disorders, and understands the potential link between these and Chiari Malformations. And there seems to be a good one in Baltimore, but none that I know of in Canada. I have a lot of signs of connective tissue problems, and it was suggested to me by a neurologist that I investigate it further. This has a huge impact on whether or not I decide to get Chiari decompression surgery, and what kind of surgery, and what surgeon, as well as how to manage my symptoms, and continual treatment of my pain, joint instability, headaches, gait problems, heart rate problems, and circulation problems such as Raynaud's phenomenon. I was just diagnosed with Raynaud's (finally) 2 days ago. I spoke to my regular Dr. (Dr. M) about all this 2 days ago, but I told her she didn't need to do anything about the referral, since to my knowledge at the time it was taken care of. She is also working to get me a referral to see a cardiologist who specializes in connective tissue disorders, but we are waiting to send the referral till my next appointment, because we want to include the right information, since this cardiologist, Dr. B, doesn't see everyone who gets referred, but picks and chooses who he thinks really needs to see him.

So, I spoke to a lovely medical secretary at my regular clinic this morning, and she said that since it's time sensitive, my best bet is to go to the walk-in clinic in the same building, since the doctors are all colleagues. When I got there the administration person tried to tell me I was wasting my time, since they didn't make referrals through walk-in, at which point I started to tear up, explained myself again, and anyway, I knew I was taking a chance but I took my seat and waited, as well as bumped up my next appointment with Dr. M so I can clear all this up with her in person, but that's not till a week and a half from now. It was all they could give me. I talked to a nice man in the waiting room. His step daughter attempted suicide recently. He seemed to really care about her. He was also trying to make me feel better, which was much appreciated. Thankfully I had my Pama Chodron When Things Fall Apart book, which is kinda hokey at times, but definitely comforting in these situations nonetheless. While I was waiting I also carefully wrote out all the contact information and other information Dr. M might need to make a referral from my messy notes, and of course had to deal with the writer's cramp, but it wasn't that bad. I'm getting used to it. I usually like to type everything out, but there was no time today. The wait wasn't that long, but I was not impressed with the person I had to deal with next.

Ok, here's where I get really mad... So, the walk-in "doctor" was actually a nurse-practitioner (these are sometimes very good, and even better than doctors), but this one was maybe 3-5 years older than me (I'm 29 now), and rather ignorant and arrogant, and was not at all afraid to pass judgement on me which was not her place at all. I was very polite and composed, and apologized several times for things being rather complicated, but also tried to communicate the importance of this referral to my life and health. Last time I saw Dr. M (2 days ago), I was feeling very sick, and had a lot of trouble just holding my head up. I was twitchy, nauseous, light-headed and weak. My heart was racing, and I was in a lot of pain. I'm sure it showed at least somewhat, and probably got me some sympathy. Today however, I was fully awake, bright-eyed, in some pain but mustering through it as I often do, and LOOKED MUCH FRIGIN' HEALTHIER THAN I ACTUALLY AM!! So, the walk-in nurse-practitioner looked at my notes and "listened" with a furrowed brow, seemed to comprehend at least enough to pass along the message, and advised me that "nothing may come of this". She seemed to think Dr. M didn't make the referral because she didn't want to, or think I needed it. I kindly corrected her. The medical secretary I first talked to on the phone seemed to "get" things a whole lot better than this lousy walk-in nurse lady. I communicated my gratitude again for her to do this for me, even though it may not follow exact protocol. As the conversation was coming to an end she said to me "I do think you're waaay involved in your healthcare". I said, "Well, this is basically my full-time job right now. I quit my job. Well, I had to." She said something like "Well, that's neither here nor there.", and I started to feel completely judged. Like I'm some whack-job who has invented all of these problems myself, and my suffering is somehow of psychological root. I thanked her again, left, held it together till I got home, but drove a little too fast. I couldn't even handle the sound of the radio, and upon getting in the door and up the stairs (I hate our stairs), fell into Dani's lap sobbing.

I am so thankful my regular doctor does not seem to think I'm nuts! During our conversation on Wednesday she commended me for actually thinking of myself for once, and quitting work that was getting way too physically demanding, and getting out of school. I finished my final essay of my BA with an 88% thank you very much! (I know I'm gloating, but that's really high for me and I gotta focus on positives.) I'm finally really putting my health first because I absolutely need to, or else I'm just going to continue to decline with no hope of improving. These problems I'm having are rather unfortunate ones to have at times, considering the lack of available knowledge about them, and the lack of adequate care and understanding. I have to be my own best advocate, because no one else will do it for me! Considering the judgmental walk-in nurse practitioner had to ask me how to spell Chiari Malformation, I don't think it is her business at all telling me how involved I ought to be in my own healthcare! I suppose to her I look like someone who is reasonably healthy and has gotten so panicked about these processes and protocols that would just happen in good time if I just wait and let the "professionals" do the work. I have tried putting my faith in doctors and it just doesn't work in my situation! That doesn't mean I don't have faith in Dr. M. I just know she has never had a patient like me before, with these complex, barely understood problems. I have to do some of this myself, and meet her half way. For instance, I have suspected I have Raynaud's phenomenon since last winter, but I didn't go in telling her I had it and to diagnose me. I brought her pictures of my feet after I was outside, told her I though I had some circulatory problems and let her say "That looks like Raynaud's!" The truth is I couldn't be 100% sure without her, and it works out better for me to let her do her job, but at the same time I have to prompt her somewhat, and for those reasons I need to be doing my own research! Why are so many medical professionals afraid of educated patients?! The ARROGANCE!!

Anyway, I capped off my morning with a nice brunch with Dani at my favorite diner, and am really trying not to feel hurt or discouraged by people who just don't know what I'm dealing with, and I'm praying that referral goes through, and it's all I can do, so f#%k the rest!

As usual, venting has helped. Thank you blog. I'm glad I'm getting used to you, even though I still miss my old journaling habit. Stupid writer's cramp.

I wish I could give a big hug to everyone else in the world who is suffering from Chiari Malformation. Sometimes I wish I just had something more common, or that seemed simpler, but I am so grateful for the support of the Chiari community. It's a tough go sometimes, but we are a strong bunch and there are a lot of us out there! There are surely many other conditions that face similar barriers, having little help through funding and research. If you don't have something everyone's heard of, you get pretty screwed sometimes. *BIG HUGS AND PATS ON THE BACK TO ALL OF YOU WHO ARE SUFFERING AND STRIVING TO SURVIVE*!!! We have to keep being out own advocates, and it sucks, but we are doing a far better job than some of these "professionals"!

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...

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

friends

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.

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.

...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 :)

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:

http://www.conquerchiari.org/index.htm

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

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.

American news clip about Chiari 1

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.