a bit of whining...

What is on my mind...

I haven't contacted any level of representation from the federal political parties. My time is running out. I don't quite know what to ask of them. I have looked at the Multiple Sclerosis Society of Canada's website, and I am aware of the current priority issues. Honestly, I don't feel like I am mentally "on" enough to have the level of conversation which I would expect (and want) from myself. I guess it isn't so much that I don't know what to ask, but I fear how it would come out in the moment.

Thankfully, today, one of the parties announced federal funding for prescription drugs...with more details to follow when the full election platform is revealed on Sunday. I KNOW that this is something that I care about.

Next...

Falling asleep is difficult for me. There was a time, within the past couple of years, that it would be lights out the minute my head hit the pillow. Not so much anymore. I can't get comfortable. And worse, I can't turn my brain off. Thoughts shoot through my mind, like a nasty game of dodge ball. I never know where they are coming from...no pattern, no rhyme or reason.

Last night, what stands out most to me, is the following thought:

My body (never mind my non-physical being!) has endured enough. This is what makes me wonder if I am actually dealing with things as well as I think I am...it all of a sudden hits me that I have experienced more in the past two and a half years than many will experience in a lifetime. The scary thing is, with my seeming un-luck, I'm likely to go through more!

Sure, I can list the illnesses: MS, PCOS, Endometreosis, Appendicitis, Peritonitis, Pancreatitis...did I leave anything out? But how about the countless needles and IV's? Sometimes the needles, take blood, sometimes they inject heavy duty medications to either "trick" my body (yeah, let's add induced artificial menopause to the previous list) or wrangle in vicious attacks on my body. MRI's, CT scans, ultrasounds...and needles that either snatch a piece of my liver or suck out my spinal fluid. Let's not forget the catheter and the surgical drain. One exploratory laproscopy, one surgical laproscopy, one failed hysteroscopy, and one successful hysterscopy...and a sleep study.

I don't think that I have missed anything. I feel like I'm a science project. Or a lab rat...if only Dr. Schmidt was still my neurologist. In the month of October, I will have two intra-muscular injections to stop my body from producing estrogen. I'm also scheduled for more blood work, and MS doctor willing, I'll have all of my scheduled Rebif needles. I'm having an ultrasound to check out my pancreas, and a CT scan to look at the rest of my abdomen (in particular, to look for an appendix).

Thank goodness my colonoscopy isn't until November! No really, I'm serious.

Emily

Little Advances

I've had a couple of personal "breakthroughs" in the past week.



Last week, Jason and I spent a few days at his grandparents trailer, a couple of hours east of Winnipeg. To keep ourselves occupied, we indulged our interest of "game playing": cards, trivia, cribbage, tri-ominos...and the list goes on. The best part of all, is that I felt "fog-free" enough to learn three new card games! I had enough concentration and memory power to learn new games, and be happy at the same time!



*I was so fog-free that I skunked Jason twice in Crib, and beat him three times at Scrabble. And I won one of the new games.



My other breakthrough happened yesterday, when I drove myself to the shopping mall...on the other side of downtown! I shopped with C. , and I even drove myself home. But let's just focus on that part, and not that fact that I am paying for it with sleepiness today.



Another exciting development for me is that I have read three novels in the past month. I can follow the story, I don't have to re-read lines or paragraphs, and I can hardly put a book down. This is not exciting because I just learned how to read...but rather I have a greater ability to retain and concentrate than I did one year ago. I mean, two years ago, the letters on the page made me wobbly, and after that moving my eyes back and forth to follow a sentence made me wobbly...this is huge!



Small things. Big impact.



Emily

in the news

I have a number of potential posts going through my mind these days: my own health updates; MS news; handicapped parking in Winnipeg (where I live); a man found dead in a Winnipeg hospital emergency room; and Winnipeg's new slogan. It almost feels as if I have been behind!

Maybe I will start with Winnipeg's new city slogan..."The Heart of the Continent". The new slogan has replaced the decades old, "One Great City" slogan, found on the road signs that greet motorists entering the city. The problem is, Winnipeg is NOT the heart of the continent, Rugby North Dakota is! Geographically speaking, Winnipeg is the longitudinal centre of Canada...so at best, it is the "Heart of the Country". And we can debate that in many ways...as we could debate One Great City too.

You may have heard more news bits about MS lately, and I surmise this is because people (health professionals, volunteers, those affected by MS) from around the world met in Montreal recently to discuss MS...Living with MS...Global Perspectives on Current Issues (or the World Congress on Treatment and Research in MS). The "hot" vitamin these days, vitamin D, has been highlighted at these meetings, and thus hit the news again. Vitamin D...friend and foe?

It isn't news that a lack of Vitamin D is a possible contributing factor to the onset of MS. Vitamin D levels have been measured in MS patients for some time. Now, studies are looking at if there are successful ways to combat a vitamin D deficiency early in life. But a lack of vitamin D alone is not the cause of MS. So the relationship of D and other issues (including hormonal) are being investigated. Using vitamin D as a treatment for pre-existing MS is also being studied.

*I was told by my MS neurologist, on my very first visit, when he saw the demylenation in my brain, before he said, "It is MS"...he asked me if I was taking Vitamin D. He said that I should be taking 1000iu daily...it won't hurt to take it.

If you have some time, take a look at this:

http://www.atlasofms.org/index.aspx

Last night, unable to fall asleep, I stumbled across this "atlas"...and fell asleep feeling happy to live where I do while learning to live with MS. To sum it up for you, a few years of world-wide research and questionnaires were used to form the stats found in this atlas. The atlas breaks down many aspects of MS (globally!) from age of diagnosis, to home benefits, to driving regulations, to alternative treatments, to existence of government drug funding...and more!

Here are some of what shocked me:

Can a person with MS lose their job because he/she has MS...the answer is NO in only a handful of countries (Canada, Australia, Paraguay)...the answer is YES in more (United States, Finland, Russian Federation).

Mean age of onset (in 1997): Canada 24.5, United States and United Kingdom 32.5, China 30.8, Italy 25

Percent of eligible people with MS who receive disease modifying treatment: Canada 75%, Russian Federation 50%, Australia 80%, Pakistan 90%, United States no data provided.

These numbers (and the hundreds more in the atlas) do beg for further information. Maybe if I read further into it, I would answer my questions. But when I finished reading approximately one dozen of the stats, I was happy to be in Canada.

Okay - that's enough for now. My brain is tired.

Emily

yes...I have more to say

I really need to go to bed, and Jason is pacing around me...either waiting for the computer, or waiting for me to go to bed (he needs me to check for monsters under the bed before he gets in himself). But I feel as if I have more to say to you, and it just didn't fit in the other post.

Yesterday evening, I received a telephone call from my MS doctor. He wanted to tell me that my blood work is still off (however my liver enzymes are consistently high, then lower, then high, then lower...which is acceptable to the hepatologist). My platelets are high, my hemoglobin is low...and a couple of other things.

Rebif, a beta-interferon, has been known to LOWER platelet counts, not RAISE them. From what I can figure from the conversation, he is strongly suggesting that I stop the Rebif and go back to Copaxone. Either he is getting tired of monitoring my ALT and AST every month, or he feels that since Rebif has some effect on my blood, maybe it is just best to stop it all together.

His phone call upset me. Number one reason, I don't want to hear that I should change my drug...in my opinion, it works! Not that we know about my lesion load, but I certainly don't seem to have had any relapses while on it.

The other reason that it upset me is that I just want to be left alone. I don't want any more problems with my body! I don't want any more doctors! I just want to live my little life in peace. Find happiness and contentment in my new reality. Discover things that I can learn within my four walls...grow at my own pace, and within my abilities. Be open to change if necessary. Do things that I can be proud off, and make me feel worthy.

And what do I have to do today...I have to check in with the "extra" surgeon who was called in for my laprascopy last month. His job is to determine what went wrong that awful week in August. He isn't even convinced that my appendix burst. All he knows that I had one memorable and gross abdomen...but why...is a mystery.

So in order to investigate, he is performing a colonoscopy in November, and another CT scan sometime before that (to compare to the previous two that I had in August). This isn't my first colonoscopy...and likely not my last. Intestinal problems are in my genes. This time around, biopsies will be taken of the intestinal lining. So much for "A-Ok" three years ago! I also need to request from my GP that I see a hematologist (blood doctor).

My shell is cracking. I am finding it harder and harder to "roll with the punches", "take it all in stride", and live "one day at a time".

So I'm going on a small holiday...because my schedule is clear (hehehe when is it not, but for doctor appointments). Jason and I are travelling to lake country for a few days. Jason is gung-ho, and I'm a bit begrudging...but I'm "taking one for my wonderful team". Jason takes a lot...I might even let him win at Scrabble...but not Trivial Pursuit!

Talk to you when we return,

Emily

really...I'm intelligent

*sigh*
Has the "smart" area of my brain been compromised by frayed wires (aka MS) or by a 26 month "hiatus" from "professional" communication?

It has been lovingly pointed out to me that both my speech and my written word (both grammar and spelling) have declined since I "got sick".

Even Jason's Scrabble scores are getting closer to mine!

I certainly can say that I notice a difference in my speech/conversation. I pause a lot more, and I have to search for words. And if I don't pause, or search...I use the completely wrong word! For example, I have repeatedly referred to my needles as "noodles".

I can say this...I type my blogs as if I am saying them out loud. Isn't that the best way to have a conversation with you?

So as for why my communication skills have declined...I don't know. Do I care....yes. A part of me believes that NOT working...just being casual, and hanging out at home has played a role. But I have read about other people living with MS who feel that at one time, they too were succinct, clear...or crap, I can't think of the words!

Thank goodness I'm still polite and cheery...that hasn't diminished!

Emily

election!

The Prime Ministers' seat is up for grabs! An election has been called by the Prime Minister, with a polling date of October 14.

In the past, I have followed political party buzz by reading the headlines, and skimming the articles. Admittedly, my heart has a lot to do with how I vote...but this time, I'm going to use my head.

Yes, I am going to give my decision more thought, but more importantly, I'm going to research where each party stands on decisions, beliefs, and support of matters that mean something to me.

I'm not talking about the environment or social issues. Of course, these things mean something to me, but I said that I am going to use my head...my brain...the area most compromised by myelin eating inflammations.

I want to know where the political parties stand on issues concerning and involving citizens with Multiple Sclerosis and there families.

Research. Accessibility to drug therapy. Income security. Assisting caregivers. MS society and the federal budget.

I'm sure there is more, and this will be fine tuned as we near the date.

Maybe you should think about why you vote for the person you do. It can be a tough decision: do you vote on a local level or on a national level. What can my MP do for me and for MS? What can the Prime Minister do for me and my MS?

What do you think?

Emily

I couldn't make this up

As the title of this post says, I don't make this stuff up. If someone were to make it up, I'm not sure if the person would be a fiction writer, a sci-fi writer, a mystery writer, a horror writer, or a fantasy writer. My life is beyond the imagination of any creative person...my life is like the work of a wannabe writer who writes a piece so far out there, that no one will publish it because it's just too ridiculous and no stretch of any readers imagination could follow it.

Do you follow me?

I have pancreatitis. Yup. Recent blood tests produced the diagnosis...which we weren't looking for. I have felt since my surgery that something just isn't right. I'm not interested in eating, and when I do eat my insides hurt. But I hurt when I don't eat too. We were simply chalking up my discomfort to "healing" and having been "very sick".

So I'm on a liquid diet, but not in the hospital yet (since I'm not vomiting). We are waiting for some repeat blood work to determine if I am trending down or up. Ironically, before I left the hospital on August 15, the numbers were already higher than normal.

*the pancreas produces digestive enzymes and can become blocked, inflamed, or infected

On another note...

I had my scheduled telephone check-up from my Rebif nurse, Elsie, the other day. I shared my recent health adventures with her, and then found out that she has to share the information with Health Canada. Health Canada tracks health related issues of patients on Rebif to look for possible trends/side effects of the drug.

As for the current state of my relationship with Rebif...it's good. I have gotten back into the habit of taking pain relievers when I go to bed to avoid being awoken by all over body aches at 1 am. My PID days are fairly decent...I'm not bed ridden on Tuesdays, Thursdays, and Saturdays. The injections themselves do produce some burning, but nothing that makes me yell or cry.

Excuse me while go and enjoy a Popsicle...

Emily

another phone call

It's after midnight, on Sunday. For the past few nights, the sandman has not come to visit me at a decent hour. Last night, it was sometime after 3am! I have restless legs, and they are moving at full speed. I try to fall asleep before the leg jerks start, but I never can.

So instead of getting frustrated, I thought that I would let you know about a telephone call that I received yesterday afternoon (Saturday). The surgeon whom I saw at the second hospital, who is named in the letter written to the hospital...whom we feel failed to do his job...called me. He felt that it was something that he should do.

He had a lot to say, and his tone was genuine, and un-rushed. He did apologize for what I have endured, and he agreed that surgery was needed. He thought that I was getting it...from the gyne department. He referred to it as mis-communication between the two departments.

I feel good that he called. Honestly, I think that we are all surprised that he did call, or at least call himself. It doesn't mean that the patient safety review is off the table...this slate is not clean.
But this has been a good start.

I'll keep you posted,

Emily

fast action

I barely hit the PUBLISH POST button on my previous post (making it viewable to all) when I received a telephone call from the OTHER hospital involved. The patient relations office wanted to let me know that they have received the letters, and the Patient Safety Review that we have requested is underway.

The review could take over a month, as the staff members that perform it, do so on their "own time". Interesting.

Emily

the truth about letters

My recent hospital and health experience has been emotional. I believe (as do many others) that the situation, for the most part, was unavoidable. That isn't to say that appendicitis is avoidable, but the hospitals and doctors did not do their respective jobs. My situation was not handled efficiently, effectively, or within basic medical practice.

For the past few weeks, Ladyfingers has lived and breathed this experience. She felt, along with the support of Dude, Jason and myself (and others too many to name here) that questions needed to be asked, and a thorough investigation into my entire ordeal needs to be made.

On Tuesday, we mailed about a dozen letters, directed towards two hospital CEO's, all doctors involved, and patient advocates. The amount of time, thought, and energy that went into these letters would blow your mind. Every detail was carefully recounted (often more than once) and then put to paper articulately and purposefully.

Among the people who support the letters, there are people who do not. But why? Maybe if you have never gone through such a situation you don't understand. Maybe if you aren't close to someone who has gone through the situation you don't understand. Maybe if you don't allow yourself to open up to the reality and possibility of emotion in life you don't understand. Or maybe you don't understand, if you are afraid of repercussion, or rocking the boat.

The letters are written because the institutions and people employed by the institutions need to be aware that their actions have repercussions. They need to be reminded that they are dealing with human beings, who not only have emotions, but have intricately designed bodies that can be harmed and scarred. Letters have the ability to remind the machine (or the boat) that real people are involved.

And if you are sitting here reading this, thinking to yourself, "So what. Good luck getting a response". Shame on you.

We mailed the letters on Tuesday, and by Thursday evening, we had our first response. My mom and dad, and Jason and I, received an e-mail from the President and CEO of one of the hospitals. He will seek out answers to our questions, and he apologized for the trauma that I went through.

And....if you are still skeptical...no, it isn't a form letter. By acknowledging our letter, he has put himself out there. We know that he knows...the ball may be in his court, but the power is in ours.

Emily