On paper, wait times don't seem like much of an issue. But now, my feelings are starting to change. As far as I'm concerned, this is crunch time, and the system isn't doing me right.
Today, I spoke with the physiotherapist that I need to see in order to best restore my perceptions. She has an eight week...no wait...twelve week waiting list! But lucky me, because I'm not working, and I said that I am available on short notice...I'm on the short notice cancellation list.
And then there is the wait time at the MS Clinic. I spoke with my "favourite" nurse last week, and she has mailed me my new prescription, along with the requisitions for weekly, bi-weekly, and monthly blood tests. When starting the medication, it is recommended that the patient have a check-up with the doctor at the three month mark. I have a previously scheduled appointment for what will be close to four weeks...and that will be my check-up. The doctor is booked up until well after three months. Wow...if he can't see me, for a recommended check-up, who is going to read the lab results from the blood tests?
At this point, I'm also not scheduled for any MRIs. It has been almost 10 months since my last brain MRI. I was on therapy for 29 weeks and I am about to start another therapy. So we have no record as to how the first therapy worked, and we have no starting brain images for the new therapy. This means that the clinic puts patients on drugs without knowing the current medical state of the central nervous system. The drugs are meant to slow the progression of the disease, and promote the regrowth of myelin (if only slightly)...how do they expect to track the internal activity?
Ugh, I'm getting wobbly. Time to check-out...
Yesterday was my last scheduled appointment with the ENT. The appointment was to review the results of the posturography and the EEG. My reaction to the news that I received at this appointment was not instant. It took a couple of hours for it to sink in that I was officially offered what has been best described as "hope".
The tests concluded that I am experiencing "motion intolerance". This is a real medical term...unlike my preferred moniker, "wobbles". Motion intolerance is the affliction and wobbles are the result. I have been unsuccessful at finding an official definition of "motion intolerance", but everything that the doctor said rang true to my experiences. Motion intolerance includes the sensation of yourself moving, or your surroundings. The indication, can be brought on by your surroundings moving, moving yourself, or simply moving your eyes. The message sent from your eyes to your brain, regarding the situation, gets jumbled.
Of the tests that were conducted, the posturography yielded the most concerning results. Apparently, despite the disease activity, my "wires" have been only somewhat compromised. According to the posturography, I have trouble keeping my feet planted when the scene I am facing is moving.
Did you know that when you are healthy, your center of gravity is focused around your ankles (messages are sent between your ankles and your brain) and when you are not as healthy, your center of gravity is in your hips?
Here is the good part...given the condition of my wires, I can be restored! The first time that I saw this doctor, he provided me with some cautiously positive news, this time...it was a definite positive! Vestibular physiotherapy, yoga, and some at-home exercises should correct my perceptions.
When this hit me yesterday afternoon, I was shocked. I was relieved. I was overjoyed. I was elated. I wanted to present this doctor with a medal! I could barely contain my excitement!
And...the doctor also said that the difficult time that I experienced following the tests was somewhat normal. Post testing experiences can range from nothing, a couple of weeks of difficult symptoms, to a brain "re-boot". This means that I did not experience a disease relapse. Clinically speaking (as oppossed to medically, as viewable on an MRI) the disease remains inactive. I'm just dealing with pseudo exacerbations, and the effects of that confounded initial attack.
Maybe I can begin to affectively move on,
This is a message of thanks and an update on how the MS Walk went for "Em's Slackers". We assembled a team of 4 people who walked 7 kilometres on Sunday, April 29th. Thank you to Corina, Lyle and Sue for joining me in the Walk. 2 members of the team wanted to do the 17 kilometre walk, but the other 2 of us balked at that idea. My goal next year is to do the 17 km walk, knowing that I'll be better prepared. It was a beautiful sunny morning, and I would have to guess it was around 15 degrees, which was just right.
As a team, we raised $1717 towards research for MS in just 3 weeks. Thank you to those who contributed to our cause. My goal next year is to have 8 walkers and a fundraising goal of $2000 for the walk on Sunday, April 27, 2008. Hopefully next year Emily will be well enough to participate in the walk, even if it is just the 4 km walk. This year was just too much for Emily given how crowds affect her. Once they get her medications in order, the crowds of people will hopefully not prevent Emily from participating.
I'd also like to thank the members of "Terry's Tailgaters" who embraced our team and some of whom also walked on behalf of Emily as well as Terry (cousin Don's wife). Maybe next year we can all get together and break off into groups of distances and keep each other going along the walk. This year, 2 of our walkers set a fast pace, sometimes leaving the other 2 of us in their dust. I think we found out who was in shape that morning, and obviously, I wasn't one of them. I think that I'm still trying to catch my breath.
Until Emily was diagnosed with MS in January, we used to look at these walks and runs that are held for the different causes and always wondered why people participated in them. But now, after participating in my first MS Walk, I understand that it is an event to get everyone together to prove that just because you are faced with an obstacle, that you can still live your life normally. There were people who participated in the walk that had canes, walkers, some were in wheelchairs and others on motor scooters. To see the hundreds of people on the walk was just phenomenal, especially at the start when everyone was walking over the Provencher Bridge and onto Tache filling the street. It was a surreal feeling.
Thank you once again for all your support!
Jason (& Emily)
I would like to take this opportunity to thank everyone for their thoughts
and prayers over the past eleven months. I also want to thank everyone who supported (or joined) Jason on the MS Walk.
I never could have imagined the barrage of emotions that I have experienced for nearly a year, but, even with such a repertoire, I could not predict what I felt the day of the Walk.
I was not able to participate in the Walk itself but I did want to be present to encourage my team of "Slackers". When I watched the crowd of walkers converging on L'Esplanade Riel, and heard the bagpipes, I was hit with another reality: thousands of people have the same goal, and the same hope as myself. Sure, I had my little team who wore their pinnies -- "I'm walking for Emily Fryer" -- but thousands of people were walking for me, and people like me. It was a powerful moment.
I know that some of you reading this e-mail have received "Emily Updates"
from my Mom, throughout this trial, so I might as well do one myself.
An update on Emily (Me!):
It has been four months since I received the diagnosis of MS. But as we all know, I have been ill for nearly a year. There continues to be confusion at a "clinical" level as to the symptoms I experience (and even more about the symptoms that I don't have). My diagnosis was not quick because of the sheer size of my "medical" attack (lesions shown in MRI's, or in my case, so many they can be seen on CT scans!)and where the attack targeted in my brain is not classic for MS. I'm still figuring out how to manage day to day in my house -- but I have slowly started back to work.
Jason has mastered my daily injections (or "therapy" as the drug company calls it). I know what you're thinking...and yes, I can give myself injections too. He has also mastered reading my eyes and lack of head movement (which can change like the wind!) when my head is no longer comfortable or safe in the space/situation it is in.
I receive tremendous support and optimism from Jason and Corina. They encourage me to continue pursuing the same dreams that I had before, as well as help me cultivate new and better dreams for the future.
P.S. Want to hear the latest pick-up line in a bar full of people with
MS --> "How many lesions do you have?"
This year we would love to have more than four members, and we hope that by organizing early, we have left time for you to join us...and if not join us...pledge us!
Last year, as a team we raised $1554 plus one member's misappropriated contributions. Jason himself raised $835 - a Highstepper! Even our team garnered a bronze!
Fundraising couldn't be easier - you can mail us a cheque, drop off some cash at our door, or pledge online!
To pledge online, please follow this link:
To join us, please follow this link:
The following two posts are copies of the individual e-mails that Jason and I sent out after last years walk.
I personally hope to walk this year - that's why you can pledge myself, or Jason, or Em's Slackers (pledges to the team gets spread evenly amongst all members).
I just kick started the beginning of my new therapy journey. I left a phone message with the MS Clinic nurse, as I figured that it was time to stoke the fire. Sure enough, when she returned my message, I received the, "What good timing you have Emily! ..." A few excuses were given, and then ultimately, the ball was released from her grip...
I should receive my prescription in the mail in a few days, as well as a phone call from the drug company.
She briefly discussed the medication side effects/reactions with me (let's keep our fingers crossed that I don't experience anything full blown). nasty. I'll save that for a future bit.
Anyway - this wasn't the topic that I had intended for today's post...but this is better.
And now, we do the dance of joy...
Today, I had a follow up with a speech pathologist. A speech pathologist is a professional, who has the task of identifying swallowing issues (as well as a number of other things). I say that it was a follow up because I first had evaluation and testing with a SP in the fall of '06.
You may or may not know this, but I take F-O-R-E-V-E-R to eat a meal. I'm as slow as molasses...at a snail's pace...You get the picture...developed old school style to best understand what I am trying to say. My difficulty with eating is pretty simple: sometimes I feel like food gets stuck in my throat. This causes me to panic, because lately, it is as if the reflex of swallowing doesn't work. Aside from this, I also simply get tired. Tired of swallowing.
When I took in my list of concerns to my MS Clinic appointment back in October, swallowing was on it. The nurse read it, and responded:
"Swallowing problems. It is way too early in your disease to have swallowing problems. And besides, we really only see swallowing problems in people with mobility issues."
Then she continued on with her rise above speech.
So - when the speech pathologist contacted me, and wanted a follow-up, I thought to myself, "Well I do think that I have problems. Carla (the SP) said that I have a slightly weak muscle...but I don't want to waste their time. Oh, what the hey, let's go anyways".
So today, I had a consultation and a flouroscopy (I ate various consistencies of food coated in barium, while an x-ray version of my head played the event on a monitor in real-time and photos were taken). The diagnosis - I have swallowing problems!
I listened intently to the SP while she spoke and pointed to various areas of the mouth and throat on a photo-copy. Trickling liquid...stuck food...foods to avoid...foods to eat...exercises...fatigue...
When she appeared to be done, I asked, "So why is this? What causes this?"
"It's because of the MS", she responded. "It isn't your imagination. And hopefully, things will stay this way."
I'm okay with this. I appreciate the SP doing her job...presenting it with honesty, positivity, and a hint of empathy.
It's dinner time...
Andrea (my sister, often lovingly called "Annie") came to help Jason and I last week. For a change, last week we called her "Rosie"... as in the Jetsons' robotic maid, Rosie. She cooked, and cleaned, and shopped, and painted my toes, and hung out with us. Apparently, she also did her "real job" via the internet. She also successfully executed her "mom role" via the telephone. Jason and I are very grateful...and we hope that Rebeccah will soon forget.
So the question still plagues me...what is going on with my head?
Life sans lorazapam?
I am going to go with relapse. I say this because it is getting better. I actually said to Jason this afternoon...
"I feel good!"
Now....I don't feel so good right now...but I can't let that get me down.
I'm going to try and post in sections...type a bit, go away for a bit, type a bit...
Let's see how this goes.
I'm still down for the count. I can't get out of bed (or off the couch) without feeling wobbly/drunk/not centered/of exaggerated movements. Jason and I aren't sure what to attribute this to; however, we feel the need to attribute it to something.
Most importantly, we need to decide if this is a relapse for me. Tracking relapses is an important part of monitoring the disease. For myself, I would prefer to track relapses while on medication designed to decrease the severity and frequency of relapses...
It was today while eating lunch, that we discussed the possibility that this is what is happening to me. The irony is that it worsened after the tests on Monday. But I have also had severe migraines and headaches for the past couple of weeks. Headaches so out of the ordinary, that the head pain is reminiscent of the "big one" that kicked off my troubles in June 06.
(*I know migraines and headaches (especially my own), as I was diagnosed as suffering from migraines when I was 16)
I will say this, though, everyday I think that it will be better tomorrow. This has its pros and cons.
Pro: it keeps me going and somewhat cheery.
Con: it doesn't allow me to ask for help, because I just assume that I will get to it tomorrow
And then each pro and con has their own pros and cons!
Pro to the Pro: Jason doesn't worry as much
Con to the Pro: people may assume that it isn't that bad
Pro to the Con: uh oh, I can't think of one
Con to the Con: this upsets the people who want to help, and don't know what to do. And, I (and we) do need help
I need to lay down now,
Oh, I have so much to say...and I'm just not in a good head space to get it all out. Or at least get it all out in a manner that is not only enjoyable for you to read, but that makes sense and you don't think that I am totally cRaZy.
(And if you aren't someone that spends face to face time with me, you should know that the people who do spend face-to-face time with me already know that I am crazy - as per the frayed wires in the noggin).
I want to tell you about the tests that I had on Monday...I want to tell you about how terrible I physically feel right now...I want to tell you about how I am waiting to start my new drug (and why I am waiting, I have been sitting on this bit since Christmas eve!)...I want to tell you about the latest in the Winnipeg Transit Why Do We Have to Communicate With One Another Saga...I want to tell you how feeling physically terrible makes me frustrated and saddened...the fertility specialists office called me the other day and he wants to see me and I am embarrassed to tell him that we have chosen me over baby...I'm angry because when I physically feel this way I can't go to Curves or wash the dishes that are in the sink. And Jason is tired.
This is what can be so troublesome. I am in no shape to go out. We need cat food and are soon to need milk (and those are just the necessities...we need a whole grocery shop). Going on my own is out of the question, and my head is in such a state that even going with Jason is unsettling for me. Jason wasn't home today in between shifts (union meeting) and won't be home tomorrow either (sign-up). He also has curling tomorrow night. And when he gets home tonight - he will be beat. He has been beat for a few days. The dishes are piling up, and the cats are getting hungry.
It must sound petty to you - but can you imagine not being able to contribute? Sitting here typing certainly doesn't help me - but I hope that by typing, I'm relieving some of my own stress. This is the kind of thing (days) that make me cry. It was almost a year ago that the social worker told us that sometimes people will have to help us by doing our dishes. We laughed at the thought.
Well, I got a bit out.
As for an automated system, one is set to be in place in a couple of years.
You can ask just about any Winnipegger, and they would tell you that we are "Friendly Manitoba"...I mean, it says so on our license plates! But I have been convinced since I got here, that the license plates are just a ploy to excite tourists. The plates should read more like a bumper sticker: Manitoba: Home to Neophobic Bargain Hunters Who Don't Want to be Disturbed.
I could go on...but I have never intended for this blog to be my soapbox for anything but MS and my experiences with the disease. So seeing as MS has not yet affected my ability to see, nor my ability to stand up and see where I'm going (or where I am) on a city bus...
Cleo, I don't think that we're in Canada anymore!
Neophobia is the fear of new things or experiences. It is also called cainotophobia. In psychology, neophobia is defined as the persistent and abnormal fear of anything new. In its milder form, it can manifest as the unwillingness to try new things or break from routine.
It is now 2008 - let it be great!
In case you are wondering how I am handling my mini-detox...it is going very well. I have been pleasantly surprised. I don't think that I have struggled any more than I would have with the help of the additional pill.
Today is my first "get-out-bed-and-feel-weird" day, as opposed to starting the day feeling normal and waiting until something brought on the "weirdness". So let's analyze it together.
1. I started my mini-detox nine days ago so it could just be hitting me now
2. I had a fun New Year's Eve and stayed up too late and it's now catching up to me
3. Despite being tired and needing to continue resting after New Year's Eve, I went to NY Day big-family dinner
4. I have had a string of decent days, of now it's time for the typical fall out that follows good days
5. It is January 2, 2008 and my mind is buzzing with all of the wonderful strides that I am going to make this year
As the owner of the body, and therefore the one who reads it's nuances the best - I think that 1 through 5 are all likely and valid.
Off to rest,
P.S. This is my 100th post!