Fuck the Parkinson's, the Dr just gave me a reason to smoke MORE!
- Thread starter mvapes
- Start date
Richy
Frequently up in space with Bowie
Those have got to be the most camp stormtroopers I've ever seen.
The doctor gave me a pretty potent steroid cream for my psoriasis(just the flaky skin kind) about a year ago. A few months back I decided that I didn't like the idea of using the stuff everyday for what used to be a minor annoyance on my elbows as people would only see it if I was wearing a t-shirt and it ain't exactly t-shirt weather at the moment. Unfortunately the plaques have come back much worse than they were before and are really itchy. I was a bit pissed off that the doctor didn't even mention how potent the stuff was they prescribed or how steroid withdrawal would aggravate the existing problem if I stopped using it otherwise I doubt I'd have ever started.
I know this problem is nothing in comparison to everyone else in the thread which is why I've never mentioned it before. I just wish I'd been better informed before I started using steroid cream so this is why I'm talking about it now. I count myself very lucky though as I have a friend who has very bad eczema and he stopped using steroid cream after a much longer period. His withdrawal symptoms were much worse than mine and he actually started losing chunks of his hair at one point. He decided to get a dose of hookworms as an alternative treatment which as far as I understand will have a similar effect to the steroid cream in suppressing his immune system. It sounds like a fair amount of hassle though because you need to monitor how many are in your system and then top them up as needed, trust me you don't want to know how you monitor the number of hookworms in your system but I can imagine at least a few of you will be able to guess.
Dreamerr
Always in a state of confusion and silliness♀
I lost a mess load of hair when I got injured cause they had me on steroids for a long time IV type oh my. I had other issues as well from them including never ever sleeping, now I sleep sometimes, and I ate 24/7 can you say party room on da floor lol. I ate things I never ate in my life and never have again lmfao.
The PD affected my breathing a bit. Keep in mind, at the end of the day the lungs are muscles. All muscles can be affected by Parkinson's, so I have been having some trouble with my breathing. Turns out that instead of using the full capacity of my lungs I am storing and breathing from the diaphragm instead.
They have me on 2 types of steroids, one inhaled twice a day and the other a pill, ingested before bed. Since then animals smaller than 20 pounds should be scared to be in my presence. I have been eating like it's my job. I swear the only reason I haven't blown up like a balloon is because of what I think may be the best part of PD.
My muscles vibrate uncontrollably, in my stomach I suffer from dystonic spasms. What they are essentially are severe spasms in your abdominal muscles causing them to tighten and loosen on and off for extended periods of time. After a bad attack I feel like I've been in the gym doing abs for hours. So, moral of the story - come kiss me so you could catch parkinson's disease, it's the new Madonna diet!
They have me on 2 types of steroids, one inhaled twice a day and the other a pill, ingested before bed. Since then animals smaller than 20 pounds should be scared to be in my presence. I have been eating like it's my job. I swear the only reason I haven't blown up like a balloon is because of what I think may be the best part of PD.
My muscles vibrate uncontrollably, in my stomach I suffer from dystonic spasms. What they are essentially are severe spasms in your abdominal muscles causing them to tighten and loosen on and off for extended periods of time. After a bad attack I feel like I've been in the gym doing abs for hours. So, moral of the story - come kiss me so you could catch parkinson's disease, it's the new Madonna diet!
t-dub
Vapor Sloth
Yeah our diseases are like cousins I think, and you are right we are turning parts of our immune system off. You will like Humira, its a really sharp TNFα inhibitor, I was on a double dose until my body figured it out. They might even let you self inject. I'm using Stelara now at $13k/90mg dose every 10 weeks which is an Interleukin inhibitor, so far the sharpest tool yet but alas its efficacy starts to wane and I have nowhere to go. I'm actually way off label since this drug is only approved for psoriasis and not Psoriatic Arthritis . . . yet . . . the infections I get a lot usually in the armpits or other "moist & dark" places. Hibiclens in the shower helps. I went to see an infectious diseases expert after having my butthole lanced and drained in the ER on my wedding anniversary and I had to be decolonized for Staph . . .
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grokit
well-worn member
$13k every 10 weeks for one drug!?! Holy shit it's good to have insurance!
I was just patting myself on the back having some seeming success in getting off of my most expensive scripts, but it's nowhere's near that ballpark. I just passed on ordering it and bought some $90 snow boots instead, with enough change left over for some more food-grade peroxide and distilled water that will last me much longer.
I'm hoping to get obamacared by the march deadline, missed this one
I was just patting myself on the back having some seeming success in getting off of my most expensive scripts, but it's nowhere's near that ballpark. I just passed on ordering it and bought some $90 snow boots instead, with enough change left over for some more food-grade peroxide and distilled water that will last me much longer.
I'm hoping to get obamacared by the march deadline, missed this one
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YeeeBuddy
Well-Known Member
Hahaha do i really look that old? Most people don't believe I'm over 21. Hopefully my ICD will never have to do its job and the battery wont have to be changed. In the year its been in me its never had any activity and the doctors are always impressed with my lab results/physical condition. I work in the meat department at a Stater Brothers and I do a shit ton of heavy lifting and I am always moving. I refuse to restrict myself, If shit happens then so be it.
Happy belated birthday Mom, i am slow .
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momofthegoons
vapor accessory addict
This thread never fails to bring a smile to my face, put perspective on my own ailments, and remind me of how many wonderful friends I've made here on the forum. As we end this year, I want to tell you all how much you mean to me. 
It's been a crazy year for many of us; in our personal lives, with our health, and even with some people who we thought were friends here on the forum being something else. But what I've seen is that, somehow, it all managed to bring this group even closer.... and more tightly knit (not to be confused with more tightly wound
). I consider myself fortunate to be a part of that.
No New Year's resolutions this year... I resolved not to do that anymore last year.
But I leave you with this.....
It's been a crazy year for many of us; in our personal lives, with our health, and even with some people who we thought were friends here on the forum being something else. But what I've seen is that, somehow, it all managed to bring this group even closer.... and more tightly knit (not to be confused with more tightly wound
). I consider myself fortunate to be a part of that.No New Year's resolutions this year... I resolved not to do that anymore last year.
But I leave you with this.....
I am often asked why we don't just move to Hawaii. I should just point the curious to the turn this discussion has taken. In Canada, @Vicki would already have had her surgery for free, and @t-dub's Stelara would probably cost less than $5 per shot. The US of A spends more on medical care than any other country in the world, almost 50% more than the next country (Switzerland) when expressed as a percentage of GDP, yet the US ranks near the bottom of many measures of provided health care. Why? Because your system fattens the bank accounts of a small group of—I was about to say people, but really they're greedy scumsuckers exploiting the sick and vulnerable—and bankrupts families. I could never live in such a country.
Vicki
Herbal Alchemist
My husband actually suggested moving to Canada. I'm sick of living with chronic illness's and getting screwed by the system. Despite the fact that we pay almost $500.00 a month just to have health insurance through hubby's employer. Then, they make us pay so much out of pocket that we can't afford to take care of our own health.
The USA is the best country to live in? Only if you are completely healthy!!
deadheadbill
I can see clearly now the smoke is gone...
Well just keep your ass up there eh. Only good thing to come out of Canada was BC weed, Labatts and Poutine!!
Well just keep your ass up there eh. Only good thing to come out of Canada was BC weed, Labatts and Poutine!!
That's enough out of you. Don't make me come down there.
Also, Molson's FTW.
deadheadbill
I can see clearly now the smoke is gone...
Bob Loblaw
Astralnaut
Enchantre
Oil Painter
New Year's Eve, people!
my hubby is depressed.
He is so very susceptible to depression, SAD, and still not having a job is wearing hard on him. Over the holidays, of course, the whole hunting for work thing gets worse, as no one actually hires at the very end of a year... I have a tendency to be "positive"... but I'm having a really hard time keeping him cheered up and motivated. On the other hand, even with my optimistic bent, I am still very aware of just how dire our situation is, and it is not pretty.
So, let's just party tonight like it's all going away, and the New Year will bring all kinds of New Goodness.
my hubby is depressed.
He is so very susceptible to depression, SAD, and still not having a job is wearing hard on him. Over the holidays, of course, the whole hunting for work thing gets worse, as no one actually hires at the very end of a year... I have a tendency to be "positive"... but I'm having a really hard time keeping him cheered up and motivated. On the other hand, even with my optimistic bent, I am still very aware of just how dire our situation is, and it is not pretty.So, let's just party tonight like it's all going away, and the New Year will bring all kinds of New Goodness.
VaporsVaporizer
On the Stoop
I hate Pred!! Even a low dose makes me CRAZYSteroids are evil!
I avoid it if i can . I am on some pretty heavy Steroid creams for my Psoriasis though![:\](/i/s/hmm.gif "Hmm :\")
I don't want to be on those either 
anyway...I hope everyone has a Happy New Year, and that no ones gets any sicker this year
Maybe we can have some remissions in 2014
or at least no one gets any worse 
At least all this holiday shit will be over tomorrow
deadheadbill
I can see clearly now the smoke is gone...
^^^^ Awesome. I'm taking a bunch up to the pub tonight for their New Years Eve party. Not gonna stay long. just try to get some signatures and drink a beer.
Much less bruising on the hand huh?
Much less bruising on the hand huh?
Vicki
Herbal Alchemist
^^^^ Awesome. I'm taking a bunch up to the pub tonight for their New Years Eve party. Not gonna stay long. just try to get some signatures and drink a beer.
Much less bruising on the hand huh?
Yeah, it's almost all gone now. I'm glad for that.
Be safe while you are out tonight! @deadheadbill
We all know there are idiots that will drive drunk, so be careful, everyone!
Enchantre
Oil Painter
I'm going to need some bubblewrap... Mr. Vicki, please send some extra my way 
Knocked my knuckle (say it WITH the k...) on the end of the stair railing. OUCH. Instant bruise. Good thing I stock Arnica in the Jumbo size containers...
Doing a BP test thing today (well, continuing)... before&after some magnesium, before&after some weed, before&after some essential oils...
Knocked my knuckle (say it WITH the k...) on the end of the stair railing. OUCH. Instant bruise. Good thing I stock Arnica in the Jumbo size containers...
Doing a BP test thing today (well, continuing)... before&after some magnesium, before&after some weed, before&after some essential oils...
Vicki
Herbal Alchemist
I'm going to need some bubblewrap... Mr. Vicki, please send some extra my way
Knocked my knuckle (say it WITH the k...) on the end of the stair railing. OUCH. Instant bruise. Good thing I stock Arnica in the Jumbo size containers...
Doing a BP test thing today (well, continuing)... before&after some magnesium, before&after some weed, before&after some essential oils...
Is this enough?
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Well, I won't be moving to Canada any time soon. And as I tell everyone, if your country is as great as mine than do yourself the same favor I do for myself - stay there.
Some of us here have facebook and twitter and most people I know are posting their New Years wishes there. Me, I don't really use those unless I want someone I haven't seen in 30 years to see how good or bad I look now. Most of my time is spent here, on FC. Not only is most of my time spent here but I've created a journal here for me to have the people most important to me (aside from Jess and the kids)go through the ups and downs of living life with a debilitating disease.
I have made friends here like no place I've ever been. My now absolute best friend on the planet is someone I met right here on FC. So many of you have gone out of your way to become part of my life, some come to me to talk about their issues and some want to hear about mine. There's even a few who don't want to talk about the bad, they just want to help me forget for just an instant the situation that I'm in.
So here we are, 3 hours from closing the chapter on another year. For some 2014 will be a new beginning, for others just an extension of prior years. But, that choice is ours. Is this a year that I'm closer to my disease taking over or a year we're closer to a cure? For me, I choose to make 2014 the best year yet. I choose to live everyday of 2014 with appreciation for what I have. I plan that not a day goes by in 2014 that I don't tell my wife and kids how much I love them.
I also promise to be a better friend, a better listener, and a better person in 2014. We all make mistakes, but there's only a few of us that can look back at them and fucking fix it!
Happy New Years my friends - you know who you are, do as I do - take 2014 by the balls and fucking own it!
PS - I also won't be moving to Canada in 2014
Some of us here have facebook and twitter and most people I know are posting their New Years wishes there. Me, I don't really use those unless I want someone I haven't seen in 30 years to see how good or bad I look now. Most of my time is spent here, on FC. Not only is most of my time spent here but I've created a journal here for me to have the people most important to me (aside from Jess and the kids)go through the ups and downs of living life with a debilitating disease.
I have made friends here like no place I've ever been. My now absolute best friend on the planet is someone I met right here on FC. So many of you have gone out of your way to become part of my life, some come to me to talk about their issues and some want to hear about mine. There's even a few who don't want to talk about the bad, they just want to help me forget for just an instant the situation that I'm in.
So here we are, 3 hours from closing the chapter on another year. For some 2014 will be a new beginning, for others just an extension of prior years. But, that choice is ours. Is this a year that I'm closer to my disease taking over or a year we're closer to a cure? For me, I choose to make 2014 the best year yet. I choose to live everyday of 2014 with appreciation for what I have. I plan that not a day goes by in 2014 that I don't tell my wife and kids how much I love them.
I also promise to be a better friend, a better listener, and a better person in 2014. We all make mistakes, but there's only a few of us that can look back at them and fucking fix it!
Happy New Years my friends - you know who you are, do as I do - take 2014 by the balls and fucking own it!
PS - I also won't be moving to Canada in 2014