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"!