Wednesday, September 28, 2011

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
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. 

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. 

Friday, March 11, 2011

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 :)

Thursday, March 3, 2011

symptom journal

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

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.

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. 
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!

Tuesday, February 15, 2011

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.


Friday, January 21, 2011

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."

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.

Friday, January 14, 2011


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”:
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 (, 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”:

"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."

Friday, January 7, 2011


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"!