I'd like to think that multiple sclerosis doesn't have something personal against me. I hate it, but I'm pretty sure that we're not in a fight with each other. My relationship with MS is not a battle. I will not defeat it, just as it will not defeat me. It's a disease doing what it is programmed to do. To call it a fight or a battle or a struggle against some sort of oppressor is to make MS out to be some kind of third world dictator with a huge sense of entitlement and delusions of grandeur.
If (When) I get sick again it will not be because I didn't fight hard enough or because I did not think positively enough or because I didn't go to Poland for "Liberation" or because I didn't go gluten and fat free or any of the other 15 to 20 other "Cures" that have been presented to me in the past three years.
It will be because I have a disease that is programmed to disable me. To grant it human feelings or actions is to, in my opinion, make light of the seriousness of what MS can do to me.
You can't reason, negotiate or put MS into exile or eject it from the community. Doing what is suggested by my healthcare team and taking the daily injection from Big Pharma is not some kind of moral failing. It's working with the best that science has to offer right now for my level of disease progression.
To personalize it, for me, makes it seem as though I am some how responsible for never getting sick again and if I am left blind or disabled or unable to stay awake it is my own fault that I just didn't *Fight* hard enough.
That is more responsibility than I am willing to take on.
Your mileage may vary.
Showing posts with label treatment. Show all posts
Showing posts with label treatment. Show all posts
Wednesday, May 9, 2012
Sunday, October 11, 2009
Fear and my Soapbox
MS scares the shit out of me every single day. As I type this the last two toes of my right foot are moving in spasm and the big toe feels as though a very low electrical charge is flowing through it. It's taking every bit of my rational mind not to panic and just start crying because the treatments haven't worked and this is just a sign that things are getting worse. Again.
I'm working my ass off trying to get my life and my body back and it just feels like nothing is working. I still get foot drop when I walk too far and "too far" is highly subjective from day to day. Sometimes it's an hour, sometimes it's to the end of the block and back. Most of the time it's 30 or 40 minutes, but that's not consistent.
What drives me nuts the most is that I never know how much I can commit to on any given day. Some days I have way more hours in the day than I have stuff to do and some days making one plan is more than I can handle. I just don't know how I'm ever going to be able to get right with my life and my future if I can't fix this. It feels like this is killing my will to live one little tiny disappointment at a time. How am I going to live like this, given all the things that I have committed to? The following might explain where I am going with this.
After watching snippets of President Obama's speech to the Human Rights Campaign this morning I realized how fortunate I am, again, that I live in Canada and that Joe made the choice to move here rather than me moving to the US.
I am in a heterosexual union with a partner who immigrated from the US after I sponsored him to come here. I have MS (duh) that was diagnosed after that marriage and sponsorship happened and lost my job because of it. My spouse is a full-time student at one of the best comprehensive universities in the country while I look for work.
If we were a same sex couple, I still could've sponsored him for immigration. He still would have been covered under my extended health care coverage offered by my employer. He still could've had me covered under the plan he now has from the university. He still would've had the right to make medical decisions for me, help manage my care, and have the right to get updates and notification about my situation if I were hospitalized. It would just happen. There would be no debate. He is my spouse, and it doesn't matter what our biology is.
My entire adult (post my 18th birthday) life I have had the following:
1. Unfettered access to a publicly funded health care system.
2. Unfettered access to no cost birth control, reproductive health advice and care and abortion if necessary.
3. Access to unemployment benefits and sick leave.
4. The right to have any relationship recognized by the state as valid with all the same the rights of a common-law relationship, which have the same legal rights as marriage. Since just before my 29th birthday the right to marry that person without it being separate but equal in both provinces I have lived. Since just before my 31st birthday that right was granted nation-wide.
5. The right to serve in the nation's military, regardless of sexual orientation or gender identity. And as such, if I can pass the same training as everyone else I could be combat infantry, even though I have ovaries.
(Side note: There have same sex marriages in both the Canadian Forces and the Royal Canadian Mounted Police force. In 2008, CF members marched in the Pride parades in Toronto and Vancouver, and in 2009 the Pride parades in Toronto, Vancouver & Montreal. Pride festivals are now a part of the Forces annual recruitment efforts.)
6. As Canadian citizen, the right to vote in every election, regardless of previous criminal history and, in the case of long term incarceration since 2002, to vote from inside prison.
7. Lived in a country that does not have state-sponsored murder.
I have said before that Joe and I would be bankrupt if I had got sick in the US. I have said before that to consider gay marriages an aberration against nature is to consider my heterosexual marriage one too because we aren't having children "naturally" either and our vows were purposely not religious. I have said before that anyone who wants to sign up to defend my nation's sovereignty should be allowed to do that. I have said before that if you stop treating people like animals they will stand up like men and women. I have said before that equalizing access to opportunity will do more to further women's equality than all the quotas in the world.
I suspect sometimes that my life is easier than the lives of many of the women I know in the US. I suspect that, even though I live in a country with limited access to firearms and has hate speech/crime laws that are enforced, I have more personal freedom than many of the people I know in the US. As Joe gets closer to graduation, the lingering question of where we will live in the next phase of our lives hangs over my head like cloud of uncomfortable uncertainty. I am not sure that I am okay with the idea of moving to a nation where the very laws of the nation clash so completely with every notion of civil liberty that I have known my entire life.
How can I even expect that that government would let me in, given my long-term chronic illness and unknown prognosis?
How can I expect Joe to give up his dreams or possibilities because of my unwillingness to pay taxes into a system I disagree with at best or their denial of me because of my broken body at worst?
I don't want to use MS as an excuse for not doing something, but I do it all the time. I've given up on the idea of going to school because the province has gutted the financial supports for students with disabilities, I'm not sure I could keep up academically with my intermittent ability to walk, the potential for crushing fatigue and the fact that most disability support programs aren't designed to deal with someone who's well one hour/day/week/month and then unable to function the next hour/day/week/month.
I know I told Joe from day one that I wouldn't live in the US under any circumstances, but I softened on that because in marriages you make compromises. I'm not sure that I can compromise on this, and I'm not sure the US government will let me anyway.
After typing all this I realize that I am probably worrying about nothing. Joe and I aren't going anywhere for the time being. I haven't got a job yet, so I don't know what kind of options I'm going to have personally. Everything is just up in the air, and until I have a better idea of what kind of future I am going to have in this body, things are just too unsettled for plans.
Next mitoxantrone (Novantrone) treatment is this coming Thursday. MRI is Nov. 23. Neuro follow up is December 17. Will I know better where I stand at that point? I don't know. I'm not sure that there's anything that she can say or do that is going to make me feel better about my future or the choices I will have to make, given that MS is going to affect every decision.
MSucks.
(Unrelated PS: I prefer Starbucks' new VIA Ready Brew instant coffee to their regular stuff. It's not the best coffee I've ever had, but in a pinch for either coffee or time, I'd take this stuff over their store beans or brew any day.)
I'm working my ass off trying to get my life and my body back and it just feels like nothing is working. I still get foot drop when I walk too far and "too far" is highly subjective from day to day. Sometimes it's an hour, sometimes it's to the end of the block and back. Most of the time it's 30 or 40 minutes, but that's not consistent.
What drives me nuts the most is that I never know how much I can commit to on any given day. Some days I have way more hours in the day than I have stuff to do and some days making one plan is more than I can handle. I just don't know how I'm ever going to be able to get right with my life and my future if I can't fix this. It feels like this is killing my will to live one little tiny disappointment at a time. How am I going to live like this, given all the things that I have committed to? The following might explain where I am going with this.
After watching snippets of President Obama's speech to the Human Rights Campaign this morning I realized how fortunate I am, again, that I live in Canada and that Joe made the choice to move here rather than me moving to the US.
I am in a heterosexual union with a partner who immigrated from the US after I sponsored him to come here. I have MS (duh) that was diagnosed after that marriage and sponsorship happened and lost my job because of it. My spouse is a full-time student at one of the best comprehensive universities in the country while I look for work.
If we were a same sex couple, I still could've sponsored him for immigration. He still would have been covered under my extended health care coverage offered by my employer. He still could've had me covered under the plan he now has from the university. He still would've had the right to make medical decisions for me, help manage my care, and have the right to get updates and notification about my situation if I were hospitalized. It would just happen. There would be no debate. He is my spouse, and it doesn't matter what our biology is.
My entire adult (post my 18th birthday) life I have had the following:
1. Unfettered access to a publicly funded health care system.
2. Unfettered access to no cost birth control, reproductive health advice and care and abortion if necessary.
3. Access to unemployment benefits and sick leave.
4. The right to have any relationship recognized by the state as valid with all the same the rights of a common-law relationship, which have the same legal rights as marriage. Since just before my 29th birthday the right to marry that person without it being separate but equal in both provinces I have lived. Since just before my 31st birthday that right was granted nation-wide.
5. The right to serve in the nation's military, regardless of sexual orientation or gender identity. And as such, if I can pass the same training as everyone else I could be combat infantry, even though I have ovaries.
(Side note: There have same sex marriages in both the Canadian Forces and the Royal Canadian Mounted Police force. In 2008, CF members marched in the Pride parades in Toronto and Vancouver, and in 2009 the Pride parades in Toronto, Vancouver & Montreal. Pride festivals are now a part of the Forces annual recruitment efforts.)
6. As Canadian citizen, the right to vote in every election, regardless of previous criminal history and, in the case of long term incarceration since 2002, to vote from inside prison.
7. Lived in a country that does not have state-sponsored murder.
I have said before that Joe and I would be bankrupt if I had got sick in the US. I have said before that to consider gay marriages an aberration against nature is to consider my heterosexual marriage one too because we aren't having children "naturally" either and our vows were purposely not religious. I have said before that anyone who wants to sign up to defend my nation's sovereignty should be allowed to do that. I have said before that if you stop treating people like animals they will stand up like men and women. I have said before that equalizing access to opportunity will do more to further women's equality than all the quotas in the world.
I suspect sometimes that my life is easier than the lives of many of the women I know in the US. I suspect that, even though I live in a country with limited access to firearms and has hate speech/crime laws that are enforced, I have more personal freedom than many of the people I know in the US. As Joe gets closer to graduation, the lingering question of where we will live in the next phase of our lives hangs over my head like cloud of uncomfortable uncertainty. I am not sure that I am okay with the idea of moving to a nation where the very laws of the nation clash so completely with every notion of civil liberty that I have known my entire life.
How can I even expect that that government would let me in, given my long-term chronic illness and unknown prognosis?
How can I expect Joe to give up his dreams or possibilities because of my unwillingness to pay taxes into a system I disagree with at best or their denial of me because of my broken body at worst?
I don't want to use MS as an excuse for not doing something, but I do it all the time. I've given up on the idea of going to school because the province has gutted the financial supports for students with disabilities, I'm not sure I could keep up academically with my intermittent ability to walk, the potential for crushing fatigue and the fact that most disability support programs aren't designed to deal with someone who's well one hour/day/week/month and then unable to function the next hour/day/week/month.
I know I told Joe from day one that I wouldn't live in the US under any circumstances, but I softened on that because in marriages you make compromises. I'm not sure that I can compromise on this, and I'm not sure the US government will let me anyway.
After typing all this I realize that I am probably worrying about nothing. Joe and I aren't going anywhere for the time being. I haven't got a job yet, so I don't know what kind of options I'm going to have personally. Everything is just up in the air, and until I have a better idea of what kind of future I am going to have in this body, things are just too unsettled for plans.
Next mitoxantrone (Novantrone) treatment is this coming Thursday. MRI is Nov. 23. Neuro follow up is December 17. Will I know better where I stand at that point? I don't know. I'm not sure that there's anything that she can say or do that is going to make me feel better about my future or the choices I will have to make, given that MS is going to affect every decision.
MSucks.
(Unrelated PS: I prefer Starbucks' new VIA Ready Brew instant coffee to their regular stuff. It's not the best coffee I've ever had, but in a pinch for either coffee or time, I'd take this stuff over their store beans or brew any day.)
Thursday, July 23, 2009
Stuff and things.
Thanks to Cake Wrecks for the photo.So, I got my new neurologist today, and it's a woman! And she is fun and a recent graduate and is supervised by this other woman who wears 3" stilettos and has a blonde Bettie Page haircut. I have the two most fabulous women in the neurology dept as my doctors! YAY!
Funny thing happened as my previous doctor was leaving the country...
I'm trying to get into this employment resource agency for people with disabilities and it requires a basic assessment of my condition and approval to work. Yesterday, in the hour before he finished at the MS Clinic he filled out my forms and had them faxed.
The agency called me to tell me that my doctor hadn't approved my return to work. This surprised me because he wrote a letter to EI saying that I was ready for regular benefits about two months ago.
She then informed me that I've had MS for 6 years, I am anorexic, on anti-psychotics, have no mobility issues, but I can't read, write or talk properly.
This is all very much news to me. I think he may have got me mixed up with another patient. So as a result I got to meet my new doctor at the clinic today. We filled out the forms properly and I had the office staff at the clinic re-fax it.
I'm still weirded out by his confusion in my paperwork, but I guess that it doesn't matter now. He's gone back to Germany, and I have a bright, shiny new neurologist!
This means that I'll have a reason to leave the house soon. Working with a job developer and employment counsellor will be good.
I changed up my Wellbutrin dose to both pills at 9 AM and I'm sleeping better. No more than 6 hours at a time, but that's definitely better than the 3 or 4 I was getting before.
Additionally, I've been following the craptastic Republican stupidity about how the US Congress' health care reform bills are "Canadian-style" health care.
IT is NOT even close. In fact, it is the kind of care that Canadians have been fighting against for about 10 15 years. Two-tier is a bad idea, but I guess in the case of Americans beggars can't be choosers, right?
The Canadian system isn't perfect, but I've never waited for anything I've ever needed. The system is run on triage and the sickest get service first. I have MS and I've had an MRI bumped because someone with a brain tumor or something needed it more than I did. I'm cool with that, because I know that person was sicker than me and didn't purchase his/her way to the front of the line. I got in a few days later.
If I had to pay for every health service I've received in the past 10 months I would be declaring bankruptcy. I had no "employer" insurance with my last job. I have had 3 MRIs, 2 MUGA scans, an EKG, an EEG, seen 5 specialists, had 4 rounds of a chemotherapy drug, three bags of steroids and have used the services of the relapse nurse, social worker and physiotherapist at the clinic as well as two visits to my family doctor to get some of the side effects dealt with. I either wouldn't have got these tests/treatments/supports or I'd be in debt up to my ancestors ears as an uninsured person in the US. If I had even the most basic of coverage in the US, I'd be swamped with bills.
I lost my job and the ability to work because of MS. I'd be destitute if we were in the US, and every DAY I am grateful that Joe moved here instead of me moving there.
Single payer insurance is the way to go, but I doubt that the culture of the US will allow them to get there. The system is too race and class based for white suburban people to allow poor people get the same care they do. The place is so Calvinist it makes my head spin.
I am sure there's more, but this is long and offensive enough.
Thursday, July 2, 2009
Whatever.
Another day of taking it easy after having my treatment. I did manage to get a couple loads of laundry done though.
It's a good thing that I wasn't trying to get out and about town today because it was much too hot for me to be running around. I can't go out in anything over 26 degrees and today it was 30 in East Van. Tomorrow it's supposed to be the same, but I hope that my appointment before noon will get me there and back before the hottest part of the day.
My appointment is with a job support agency that says it specializes in helping people with disabilities find meaningful employment. I'll be the judge of that. I just hope that it isn't as frustrating and enraging as the last time I tried to get into this.
I think that the Wellbutrin is making my insomnia worse. That's not cool.
I am so angry and I can't even specifically name why.
I need a stationary bike and it's the last thing I've ever wanted to own.
It's a good thing that I wasn't trying to get out and about town today because it was much too hot for me to be running around. I can't go out in anything over 26 degrees and today it was 30 in East Van. Tomorrow it's supposed to be the same, but I hope that my appointment before noon will get me there and back before the hottest part of the day.
My appointment is with a job support agency that says it specializes in helping people with disabilities find meaningful employment. I'll be the judge of that. I just hope that it isn't as frustrating and enraging as the last time I tried to get into this.
I think that the Wellbutrin is making my insomnia worse. That's not cool.
I am so angry and I can't even specifically name why.
I need a stationary bike and it's the last thing I've ever wanted to own.
Wednesday, July 1, 2009
Hiya.
Happy Canada Day!
I have a solumedrol headache from mito treatment #4.
Next dose is October 15, 2009... the second anniversary of the day I quit smoking and my friend Erin's birthday.
I have a peer support person the MS Society gave me who calls me and has left the door open for me to call her. I don't know what to say to her, so I just let her ask the questions.
I have been given a prescription for a stationary bike. I don't get enough exercise and I will start to atrophy if I don't get 30 minutes of aerobic exercise 4 days a week. So I have to buy a stupid Human Hamster Wheel.
I'm sore and cranky from steroids and my left hand hurts from having a couple liters of fluid pushed into it today. So Ima go lay down and play solitaire on my iPod.
Friday, March 20, 2009
I am an Atheist
As part of OutCampaign.org's "I am an Atheist" campaign, Friday, March 20, 2009 is the first online "out" day for various non-religious/non-believers on Facebook. It's migrated to the blogosphere over the day and I'm pleased to be a part of it. In short:
"We rally for freedom of thought, the right to believe and not to.
We rally to erase the social stigma around nonbelief.
We rally in solidarity with those who live where freedom and equality for nonbelievers is only a dream.
We rally to tell the world: we are nonreligious, we are equal, respect us.
This is not a hate rally: we are against false beliefs, not those who believe in them. Intolerance will not be tolerated."
I didn't really take all of this too seriously until I saw Montel William's appearance on the Oprah show on Tuesday and had been evangelized to via email. And now my dander is up and my ass is chapped.
First off, MS is not a gift that has given my life meaning. I was not "given" MS so I would return to serving my lord and saviour. As a non-believer, I question whether there is an actual meaning or reason for existence at all. If there is a "greater meaning" it needs to happen in this life, now, rather than in some fantasy place after this life is over or in some future life where I try and work out the problems of this one.
To say that a disease is a lesson is to fudge the truth. Yes, there are problems in the environment, in the food systems and with lifestyle choices, but to act as though MS or cancer or HIV or whatever is divine retribution for the abuse of the planet or (more often) for the abuse of one's body is as bad as holding out an $85 a week colon cleanse as the solution to someone's problems. Or a vitamin, diet or exercise program as a cure-all to viruses and disease. Jesus/God/Higher Power are just as futile and false hope as any of the whack-job "cures" I've been offered over the past 40-ish days.
I know that in some circles, quoting Karl Marx is a conversation ender but here it is.
Religion is the sigh of the oppressed creature, the heart of a heartless world, and the soul of soulless conditions. It is the opium of the people.
Marx, K. 1976. Introduction to A Contribution to the Critique of Hegel’s Philosophy of Right. Collected Works, v. 3. New York.
Offering me religious redemption is as offensive to me as offering me platitudes or junk science to treat my disease.
I've been accused of being miserable and not wanting help. That is simply not true. I want help I can use. I have no problem with having to adapt my life to my disease, but telling me that babies, disability pensions and volunteer work are "fulfilling" and meaningful is a slap in the face. That may be *your* life; it's great that you can find some contentment in that, but that is not what I want for *my* life.
I am an Atheist. It's funny that the Holy Roman Catholic and Apostolic Church, the 12-Step movement and neo-paganism helped me get there, because I'm fairly certain that wasn't their intent. I am also very against peer-support as a result of my attempts to deal with sexual assault, drinking and drugs, mental illness and quitting smoking. With my experiments in trying to find someone who isn't completely Pollyanna about MS and a fully functioning person with a life not defined by MS, I'm convinced more than ever that peer support is how you keep the sick, sick.
In summary, if you've got some useful and practical suggestions about how I can retain my sense of self, keep at least some of the things I love in my life, and how I can get and stay well, then I'd appreciate your peer support. I'm not getting any better. My condition has not changed since my first post about the improvements. I need useful solutions in order to deal with this.
But if all you've got is "you gotta change", "your life as you knew it is over, suck it up princess", and/or "pray ta Jeesus", you aren't my peer.
As a side note, I'm working on a project with the MS clinic's social worker to find something to be inspired by. Since personal stories don't really do it for me, I've decided to find inspiration in music. I've asked my friends who've expressed an interest in helping me to send me a single mp3 of a song that inspires them. Since last night I have collected four songs. As a result of this project I am now using my iPod as a defence mechanism. Here's the song of the day:
No way of knowing if she's ever coming backAlive Alone - The Chemical Brothers - Exit Planet Dust
No way of knowing if I care or not
No way of knowing if she's right or if she's wrong
No way of knowing if I'll carry on
And I'm alive
And I'm alone
And I've never wanted to be either of those
Monday, March 16, 2009
My Kingdom for an $85 Cure!
As I mentioned before, I spent some time online with the MS "Truthers".
As a result of this, I have this crazy woman in Connecticut sending me her scientific thesis summaries about what causes and "cures" MS. She didn't write cures. She wrote "cures", because to hold out her formulations as a cure would be fraud and the FDA could move to have her shut down. But if she writes "cures", to mean "I live symptom free", it's perfectly legal.
She sent me information on her mail order business. She wants me to purchase her "cure" because in 5 days I will be "cured" if I do it.
So I read what her cure was.
$85 a week for a colon cleanse. $85 a week for a colon cleanse program that will only "guarantee" results if I do it for 52 weeks. In a row. At the same day and time of the week, every week.
THIS is how desperate this disease makes you, and if this woman had any sort of science and documentation to back her up *I* would probably try it. I would do just about anything, short of human sacrifice, to not have to deal with this. I would just like to get better, find some sort of maintenance program which gives me my life back and then forget all about having this disease.
But this science is coming from a woman who is a PhD candidate at a fine arts academy, which was the obvious next step after completing her MFA in Creative Writing.
Good "science" is often the product of Fine Arts education.
As a result of this, I have this crazy woman in Connecticut sending me her scientific thesis summaries about what causes and "cures" MS. She didn't write cures. She wrote "cures", because to hold out her formulations as a cure would be fraud and the FDA could move to have her shut down. But if she writes "cures", to mean "I live symptom free", it's perfectly legal.
She sent me information on her mail order business. She wants me to purchase her "cure" because in 5 days I will be "cured" if I do it.
So I read what her cure was.
$85 a week for a colon cleanse. $85 a week for a colon cleanse program that will only "guarantee" results if I do it for 52 weeks. In a row. At the same day and time of the week, every week.
THIS is how desperate this disease makes you, and if this woman had any sort of science and documentation to back her up *I* would probably try it. I would do just about anything, short of human sacrifice, to not have to deal with this. I would just like to get better, find some sort of maintenance program which gives me my life back and then forget all about having this disease.
But this science is coming from a woman who is a PhD candidate at a fine arts academy, which was the obvious next step after completing her MFA in Creative Writing.
Good "science" is often the product of Fine Arts education.
Thursday, March 12, 2009
The First Ninety Days
Three months ago something that I had been suspecting, but hoping for something else, happened.
It wasn't a shock or a surprise. I have Google. I know how to put symptoms into the search and come up with possible diagnoses. Multiple sclerosis came up way more often than anything else. I knew for weeks that it wasn't cancer or a tumor. I was fairly sure that is was MS, but after watching a few too many episodes of House I secretly hoped for something more exotic and curable. I knew. I just wouldn't or couldn't say it because it's not curable. I've never had anything before that couldn't be cured.
I don't deal well with this fact. I have an ongoing issue with having the will to live, and I won't lie to you... I often wish that I was terminal. After a couple of decades of involvement with the mental health systems, I know that there's a difference between not having the will to live and being suicidal. I am not suicidal. I just find life really difficult at the best of times, and now that it's the worst of times, I'm not sure what the point is.
However, three interesting things have happened over the past 90 days that have changed my world view from "Life is not worth living" to "Well, lets give this living thing a whirl."
Trust me... Vast. Improvement.
1) I made my first introductions to internet discussion groups about MS. I lasted about two weeks. I was inundated with emails from people who had great "research" findings that claimed that if I went on a gluten, ovo-lacto, legume, sugar, and meat free diet, had a colon cleanse, smoked pounds and pounds of organically grown marijuana, AND have the government investigate the viral loads of the drinking water, I would never suffer from another symptom of MS. I am to avoid every MS drug approved by the FDA because they're poison and I will die 30 years sooner. I am to transfer every marital asset into my name because Joe *is* going to leave me before the end of 2010. (99.999999999999% of ALL husbands leave within two years after diagnosis.)
It's like MS has it's own "Truther" movement.
Tin foil hats look terrible on me and dealing with people with levels of negativity that make ME look like Mary Poppins, so I bounced. I am fairly tolerant of other people's crazy, but I can't deal with conspiracy theorists. There was also a huge movement to get government to approve the use of low doses of pretty heavy-duty pain killers in the "treatment" of MS. I'm not sure how that works, but it's not my bag.
2) My doctor made a great case for a course of mitoxantrone while leaving the ultimate decision to me. I was sitting there in his office in January thinking, "If it's this bad after less than a year, how bad is it going to be if I do nothing." I'd read some about the other treatments and diets and changes and realized that I would probably get much worse until those things started working.
The first treatment went really, really badly until about two weeks later. One day, I just woke up feeling better. Then, quite at random, things started working again. Not all the time, but they would work. I had my second treatment a week ago and nothing bad happened. My improvements kept building and building until Tuesday of this week. I went to get a cinnamon bun from the corner store (about a half a block away) and I was halfway there when I realized that I was walking without a cane. Yesterday I did it again.
Last night I was walking normally. I don't walk normally all the time, but I'm up to about 80 or 90% of the time. When I stand up, I don't have to physically correct my stance to keep my balance. That happened every time I stood up yesterday and today.
This treatment is really working, and I can see measurable results that tell me that I am going to get better. Two or three months ago that wasn't obvious to me.
and finally,
3)This blog was found by Lisa Emrich and she was kind enough to add me to the MS Blogroll she runs.
This allowed me to access the real stories of real people who aren't devastated by this disease on a daily basis in a way that the online discussion groups just didn't. I'm no beacon of hope and will never advocate for the rectal use of sunshine, but it's just really, really good to see people who are just getting up and doing it.
As I was writing my previous entry, all of a sudden I had the lyrics of Matthew Good Band's Strange Days [You Tube] going through my head. Specifically the last verse.
We're done lying for a living
The strange days have come
and you're gone
You're gone
Either dead or dying
Either dead or trying
to go
Good morning
Don't cop out
And today that previous entry was featured in that Carnival of MS Bloggers #31. The Carnival is "a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis."
With that, I am going to rename the title of my blog.
Either dead or trying...
It wasn't a shock or a surprise. I have Google. I know how to put symptoms into the search and come up with possible diagnoses. Multiple sclerosis came up way more often than anything else. I knew for weeks that it wasn't cancer or a tumor. I was fairly sure that is was MS, but after watching a few too many episodes of House I secretly hoped for something more exotic and curable. I knew. I just wouldn't or couldn't say it because it's not curable. I've never had anything before that couldn't be cured.
I don't deal well with this fact. I have an ongoing issue with having the will to live, and I won't lie to you... I often wish that I was terminal. After a couple of decades of involvement with the mental health systems, I know that there's a difference between not having the will to live and being suicidal. I am not suicidal. I just find life really difficult at the best of times, and now that it's the worst of times, I'm not sure what the point is.
However, three interesting things have happened over the past 90 days that have changed my world view from "Life is not worth living" to "Well, lets give this living thing a whirl."
Trust me... Vast. Improvement.
1) I made my first introductions to internet discussion groups about MS. I lasted about two weeks. I was inundated with emails from people who had great "research" findings that claimed that if I went on a gluten, ovo-lacto, legume, sugar, and meat free diet, had a colon cleanse, smoked pounds and pounds of organically grown marijuana, AND have the government investigate the viral loads of the drinking water, I would never suffer from another symptom of MS. I am to avoid every MS drug approved by the FDA because they're poison and I will die 30 years sooner. I am to transfer every marital asset into my name because Joe *is* going to leave me before the end of 2010. (99.999999999999% of ALL husbands leave within two years after diagnosis.)
It's like MS has it's own "Truther" movement.
Tin foil hats look terrible on me and dealing with people with levels of negativity that make ME look like Mary Poppins, so I bounced. I am fairly tolerant of other people's crazy, but I can't deal with conspiracy theorists. There was also a huge movement to get government to approve the use of low doses of pretty heavy-duty pain killers in the "treatment" of MS. I'm not sure how that works, but it's not my bag.
2) My doctor made a great case for a course of mitoxantrone while leaving the ultimate decision to me. I was sitting there in his office in January thinking, "If it's this bad after less than a year, how bad is it going to be if I do nothing." I'd read some about the other treatments and diets and changes and realized that I would probably get much worse until those things started working.
The first treatment went really, really badly until about two weeks later. One day, I just woke up feeling better. Then, quite at random, things started working again. Not all the time, but they would work. I had my second treatment a week ago and nothing bad happened. My improvements kept building and building until Tuesday of this week. I went to get a cinnamon bun from the corner store (about a half a block away) and I was halfway there when I realized that I was walking without a cane. Yesterday I did it again.
Last night I was walking normally. I don't walk normally all the time, but I'm up to about 80 or 90% of the time. When I stand up, I don't have to physically correct my stance to keep my balance. That happened every time I stood up yesterday and today.
This treatment is really working, and I can see measurable results that tell me that I am going to get better. Two or three months ago that wasn't obvious to me.
and finally,
3)This blog was found by Lisa Emrich and she was kind enough to add me to the MS Blogroll she runs.
This allowed me to access the real stories of real people who aren't devastated by this disease on a daily basis in a way that the online discussion groups just didn't. I'm no beacon of hope and will never advocate for the rectal use of sunshine, but it's just really, really good to see people who are just getting up and doing it.
As I was writing my previous entry, all of a sudden I had the lyrics of Matthew Good Band's Strange Days [You Tube] going through my head. Specifically the last verse.
We're done lying for a living
The strange days have come
and you're gone
You're gone
Either dead or dying
Either dead or trying
to go
Good morning
Don't cop out
And today that previous entry was featured in that Carnival of MS Bloggers #31. The Carnival is "a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis."
With that, I am going to rename the title of my blog.
Either dead or trying...
Sunday, March 8, 2009
Forward motion
Joe and I went to Ms. Lina's art show closing this afternoon. We had a glass of wine, learned about methodologies and mediation, and then went and had a burger and fries at the greasy spoon down the block from our house.
I walked from 12th Ave to the equivalent of 19th Ave. That's 7 blocks. I walked them and my leg didn't go floppy. It went floppy shortly after arriving home, but it didn't stop working while I was outside of the house.
I've had no further side effects of the treatment. Every day since my treatment I've woken up with more energy and more or longer lasting abilities.
If I can't find something worthwhile to do with the rest of my life, it may just be all a waste of time. I've got to use these physical gains while I've got them, because goodness only knows how long it will last. The nature of MS is one of uncertainty; a level of uncertainty we all have but don't have to acknowledge. Tomorrow I might not be able to walk, or talk, or see. It's not likely, but it is not outside the realm of possibility. Tomorrow you might be hit by a bus. Again, not likely, but not impossible. Having MS just seems to make me more conscious of making plans based on what I can do today, while always having to remember not to plan the results because I might not be able to complete those plans tomorrow.
I've been thinking about the future, and trying to figure out in what direction I want to direct my energies. I need to consider what I need to be fulfilled along with the ability to take this new direction and earn an income on either side of the Canada/US border. I think that I'm putting together some ideas in my head.
If the personal is political and vice versa, then there are a couple of ways I can put what I am interested in to good use. I believe very strongly in health education, as in physical, sexual and mental health. I also believe very strongly that governments and communities play a big role in influencing the public.
There's got to be a way to combine public health with public service. There's got to be some way of making health a political issue.
Yet I think that these are just the musings of a cognitively impaired mind.
I'm pretty sure that no one other than me is interested in this shit.
I walked from 12th Ave to the equivalent of 19th Ave. That's 7 blocks. I walked them and my leg didn't go floppy. It went floppy shortly after arriving home, but it didn't stop working while I was outside of the house.
I've had no further side effects of the treatment. Every day since my treatment I've woken up with more energy and more or longer lasting abilities.
If I can't find something worthwhile to do with the rest of my life, it may just be all a waste of time. I've got to use these physical gains while I've got them, because goodness only knows how long it will last. The nature of MS is one of uncertainty; a level of uncertainty we all have but don't have to acknowledge. Tomorrow I might not be able to walk, or talk, or see. It's not likely, but it is not outside the realm of possibility. Tomorrow you might be hit by a bus. Again, not likely, but not impossible. Having MS just seems to make me more conscious of making plans based on what I can do today, while always having to remember not to plan the results because I might not be able to complete those plans tomorrow.
I've been thinking about the future, and trying to figure out in what direction I want to direct my energies. I need to consider what I need to be fulfilled along with the ability to take this new direction and earn an income on either side of the Canada/US border. I think that I'm putting together some ideas in my head.
If the personal is political and vice versa, then there are a couple of ways I can put what I am interested in to good use. I believe very strongly in health education, as in physical, sexual and mental health. I also believe very strongly that governments and communities play a big role in influencing the public.
There's got to be a way to combine public health with public service. There's got to be some way of making health a political issue.
Yet I think that these are just the musings of a cognitively impaired mind.
I'm pretty sure that no one other than me is interested in this shit.
Friday, March 6, 2009
Pretty Good
Today was an incredibly surprising day.
I had a really crappy night. Pounding heart, uncomfortable muscles with twitches, a tension headache across the brow, and major anxiety.
I woke up this morning and my legs worked. My body didn't ache. I didn't have a headache, nausea or feel like vomiting. The pressure behind my left eye was gone and the continuing blood-shot look of that eye continues to decrease. I felt *good*.
I didn't feel back to normal, or like I did a year ago, but I felt good. I felt like maybe I was making some progress. Like maybe things really could be different in a couple of months. Last night was the first case of side effects of the solumedrol steroid treatments. Five doses and then I get side effects. Great.
Speaking of side effects, the reaction I had the first time to this treatment likely wasn't caused by the treatment, but the fact that I had a slight case of double vision that was causing vertigo. My EEG showed some crazy stuff going on with my ocular nerve before the treatment, and it took over two weeks for the treatment to shut it down. So, 17 days of puking was caused by my eye. How about that?
It's weird, I have felt so crappy for so long to have a day like today (a day I've been dreading for more than a couple of weeks) is really inspiring. I can't shake the feeling in the back of my head that it's all going to fall apart again, but today was good.
In about 15 hours I will be past my period of cytotoxicity and will be able to kiss and drool on my husband again. I am going to try a new remedy to ease my dry, flaking, screwed up skin tomorrow, and try to get back into my routine of vitamins and supplements to make up for the fact that I really, really can't cook.
I wore makeup to the hospital yesterday. It's the first time I've worn makeup in months. That's a big deal, but it felt really good to actually give a shit about my appearance.
The thing that freaked me out the most yesterday was that I couldn't remember being there a month ago. I mean, I know I went, I know that my friend Rina took me there and met me at the nurse's station to pick me up, but I couldn't remember where I went in the hospital, I didn't remember the nurse, or the room, or anything. The nurse remembered everything about me, including what kind of hat I wore the last time. She remembered my husband's name, even though he wasn't even there the last time. It was weird. I was incredibly upset that I couldn't remember anything about my first treatment other than the guy who was in the next bed was kind of a jerk.
Ahhhh, cognitive difficulties. Or trauma. Who knows really?
I have a difficult time being patient with myself, I have a lot of things that I have to work out financially and career-wise. I wish I was capable of drinking more wine with friends and being able to fall asleep at midnight or getting up before 1 PM.
About getting up before 1 PM, my mum is telling my grandma I have MS tomorrow. So, I have to be up at 9:15 AM to suck back enough coffee to be coherent enough to talk to my grandma. She's a little emotional, loves her grandkids, and has a blood pressure issue. I don't want her to have a stroke over this, so there's a ledge she will need to be talked down off of.
I hope mum has a lot of tissues. This is going to be a tear-jerker for her.
I had a really crappy night. Pounding heart, uncomfortable muscles with twitches, a tension headache across the brow, and major anxiety.
I woke up this morning and my legs worked. My body didn't ache. I didn't have a headache, nausea or feel like vomiting. The pressure behind my left eye was gone and the continuing blood-shot look of that eye continues to decrease. I felt *good*.
I didn't feel back to normal, or like I did a year ago, but I felt good. I felt like maybe I was making some progress. Like maybe things really could be different in a couple of months. Last night was the first case of side effects of the solumedrol steroid treatments. Five doses and then I get side effects. Great.
Speaking of side effects, the reaction I had the first time to this treatment likely wasn't caused by the treatment, but the fact that I had a slight case of double vision that was causing vertigo. My EEG showed some crazy stuff going on with my ocular nerve before the treatment, and it took over two weeks for the treatment to shut it down. So, 17 days of puking was caused by my eye. How about that?
It's weird, I have felt so crappy for so long to have a day like today (a day I've been dreading for more than a couple of weeks) is really inspiring. I can't shake the feeling in the back of my head that it's all going to fall apart again, but today was good.
In about 15 hours I will be past my period of cytotoxicity and will be able to kiss and drool on my husband again. I am going to try a new remedy to ease my dry, flaking, screwed up skin tomorrow, and try to get back into my routine of vitamins and supplements to make up for the fact that I really, really can't cook.
I wore makeup to the hospital yesterday. It's the first time I've worn makeup in months. That's a big deal, but it felt really good to actually give a shit about my appearance.
The thing that freaked me out the most yesterday was that I couldn't remember being there a month ago. I mean, I know I went, I know that my friend Rina took me there and met me at the nurse's station to pick me up, but I couldn't remember where I went in the hospital, I didn't remember the nurse, or the room, or anything. The nurse remembered everything about me, including what kind of hat I wore the last time. She remembered my husband's name, even though he wasn't even there the last time. It was weird. I was incredibly upset that I couldn't remember anything about my first treatment other than the guy who was in the next bed was kind of a jerk.
Ahhhh, cognitive difficulties. Or trauma. Who knows really?
I have a difficult time being patient with myself, I have a lot of things that I have to work out financially and career-wise. I wish I was capable of drinking more wine with friends and being able to fall asleep at midnight or getting up before 1 PM.
About getting up before 1 PM, my mum is telling my grandma I have MS tomorrow. So, I have to be up at 9:15 AM to suck back enough coffee to be coherent enough to talk to my grandma. She's a little emotional, loves her grandkids, and has a blood pressure issue. I don't want her to have a stroke over this, so there's a ledge she will need to be talked down off of.
I hope mum has a lot of tissues. This is going to be a tear-jerker for her.
Wednesday, March 4, 2009
Projections
Tomorrow is my second of six mitoxantrone treatments.
Mitoxantrone is a chemotherapy drug that is cardio and cyto toxic. If I take too much or for too long it could damage my heart. I also have to make sure that no one is exposed to my bodily fluids for 48 hours after I am dosed.
It's delivered with an IV steroid and an anti-nausea drug. It takes about two and a half hours to get all that into my system.
I receive about 1/4 of the dose someone with cancer would get, and it still makes me ill if I don't monitor my intake of anti-nausea drugs. It was really difficult to make sure I got the dosing right the last time with only 12 hour Gravol (that only lasted 8 hours) to deal with it, so I think that the MS clinic and I have decided that I will get a prescription grade anti-nausea drug this time.
yay...
I seem to have spent much of this day trying not to be terrified of the next two weeks. The side effects of my first treatment were so freakin' awful that it's difficult for me to just stay in this day, where I'm not sick and actually feeling like I am starting to gain the long term benefits of this treatment.
MS is an auto-immune disorder. For some reason my immune system thinks that myelin (the fatty insulation coating around the nerve endings) is the enemy and must die. When your nerve endings get demyelinated you start getting scrambled or dropped signals. In the simplest terms, my brain regularly gets "404 - Page not found" errors. The idea behind getting chemotherapy is that it will stop my immune system from eating my brain fat.
Everyday I don't have feeling in my finger tips and toes and I have fatigue. Most days I have uncoordination on my left side, pain in my joints, pressure behind my eyes, a loss of focus in my vision when I get tired, and general cognitive shortages. I have a difficult time sitting down to read, as I forget the paragraph I just finished, so the next one doesn't make sense. I've asked Joe for a knife when I meant scissors. That sort of thing.
As someone who prided herself on remembering every postal code and phone number she's ever had, having these kinds of deficits are frustrating to the point of anger. I feel like I'm not smart anymore. I can't go to work anymore. I can't dance anymore. I can't wear high heels anymore. My skin and hair are a mess from the chemo, so I don't look pretty anymore. Because I'm such a mess I don't go out anymore, except to go to the doctor.
It's like I've lost most of my identity to this disease. Everything I loved about being me is gone except for Joe, my friends, my family and my apartment.
My internet friend David was nice enough to buy me a book from my Amazon.ca wishlist called MS and Your Feelings by Allison Shadday.
In it she gives a list of signs that you've come to accept your diagnosis and disease. The first one is:
MS is no longer the focus of your life.
At 82 days, this seems impossible. I can make it to the corner store on my own and that's an accomplishment! The idea that MS will no longer be the focus of my life is so unrealistic at this point it seems almost otherworldly.
I'm not saying it's impossible. I'm just saying that it's difficult to believe.
Mitoxantrone is a chemotherapy drug that is cardio and cyto toxic. If I take too much or for too long it could damage my heart. I also have to make sure that no one is exposed to my bodily fluids for 48 hours after I am dosed.
It's delivered with an IV steroid and an anti-nausea drug. It takes about two and a half hours to get all that into my system.
I receive about 1/4 of the dose someone with cancer would get, and it still makes me ill if I don't monitor my intake of anti-nausea drugs. It was really difficult to make sure I got the dosing right the last time with only 12 hour Gravol (that only lasted 8 hours) to deal with it, so I think that the MS clinic and I have decided that I will get a prescription grade anti-nausea drug this time.
yay...
I seem to have spent much of this day trying not to be terrified of the next two weeks. The side effects of my first treatment were so freakin' awful that it's difficult for me to just stay in this day, where I'm not sick and actually feeling like I am starting to gain the long term benefits of this treatment.
MS is an auto-immune disorder. For some reason my immune system thinks that myelin (the fatty insulation coating around the nerve endings) is the enemy and must die. When your nerve endings get demyelinated you start getting scrambled or dropped signals. In the simplest terms, my brain regularly gets "404 - Page not found" errors. The idea behind getting chemotherapy is that it will stop my immune system from eating my brain fat.
Everyday I don't have feeling in my finger tips and toes and I have fatigue. Most days I have uncoordination on my left side, pain in my joints, pressure behind my eyes, a loss of focus in my vision when I get tired, and general cognitive shortages. I have a difficult time sitting down to read, as I forget the paragraph I just finished, so the next one doesn't make sense. I've asked Joe for a knife when I meant scissors. That sort of thing.
As someone who prided herself on remembering every postal code and phone number she's ever had, having these kinds of deficits are frustrating to the point of anger. I feel like I'm not smart anymore. I can't go to work anymore. I can't dance anymore. I can't wear high heels anymore. My skin and hair are a mess from the chemo, so I don't look pretty anymore. Because I'm such a mess I don't go out anymore, except to go to the doctor.
It's like I've lost most of my identity to this disease. Everything I loved about being me is gone except for Joe, my friends, my family and my apartment.
My internet friend David was nice enough to buy me a book from my Amazon.ca wishlist called MS and Your Feelings by Allison Shadday.
In it she gives a list of signs that you've come to accept your diagnosis and disease. The first one is:
MS is no longer the focus of your life.
At 82 days, this seems impossible. I can make it to the corner store on my own and that's an accomplishment! The idea that MS will no longer be the focus of my life is so unrealistic at this point it seems almost otherworldly.
I'm not saying it's impossible. I'm just saying that it's difficult to believe.
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