The afternoon following the last post, I spoke with my neurologist at length.
Turns out that he misunderstood the severity of my conditions when I originally called him almost 2 months ago. He requested I start IV steroids immediately but due to finances (and partly the needle thing) I declined and opted for Prednisone... again. Fourth of fifth time in just over a year that I have been on it.
And if taking roids wasn't enough for my body to deal with.. I quit smoking last weekend. I have been a pack a day smoker for many years. Dropping them here and there for a couple months at a time, but I have been a pack a day for five or six years straight. Anytime I have quit has always been cold turkey including this time.
I have been wanting to quit for a long time. Its obviously unhealthy, it stinks, its expensive, its fucking awesome and will miss it.
I have been in withdrawals, headaches daily, body temp rises and muscles/nerves fuck up, and worst of all so far, not a decent shit has been taken...
I am in a very uncomfortable state where either due to no smoking or the steroids, my body does not want to take a shit.
I have been all over fiber and water (drink nothing but water anyways). Yesterday and today I have had once again, the fucked up experience of using suppositories (multiple types)...I don't know how adventurous people go there with anything... Each one has felt more demoralizing than the last. I essentially feel like I am raping myself.
Even with the suppository self-rape I have not been able to manage a solid flush.
I hope this does not end in a trip to a doctor....
I will buy a pack of smokes before long if I don't feel any better and accept that I need a method to kicking this particular addiction.
Saturday, July 28, 2012
Tuesday, July 24, 2012
Update 7/24
My last grandfather passed away at 80 years old a couple weeks ago. He lived a good life and he was a good man. He taught me a lot of things
and never got angry with me in all the time I spent with him.
Glad I made the trip to see him a month before he passed. While it was rough at the time, I look on it later and only focus on the time with him. Same will be thought of the trip I made for his memorial service. Both were 3 day trips and 1500 miles round trip.
I have been fucked up for a while now. I think going on nearly 2 full months of using a cane. Cannot keep my balance. Right leg wants to drag at times, more often as the day gets long. Difficulty getting in and out of chairs. Hands and feet are getting cramp spasms at times that cause them to curl in, really fucking painful. Getting 'the hug' and waves of pain. It goes on and on every day. Where is the 'remitting' part???
Yesterday I had what felt like three sets of hands grab my leg and pull it down. That has still left my leg muscles sore and aching.
It goes on, I know there's something big that I am forgetting (there's one). I called my neuro and we have played phone tag for a week now... I am assuming there is nothing he can do except offer me pills. I wont take them so the calls are for record purposes. If I have to file for disability at some point, there is a record of mydemise decline.
I am moving to another state in the next month or so, the decision where, and the impending move has been very stressful. I know its not helping my body get right.
There is something that I had my heart set on doing while I lived here that I will not be able to do because of time and finances. It was something important enough to me, as a grown man it has brought tears to my eyes.
I am struggling to save every penny I can for moving. This will require that I go without cannabis for who knows how long. I wont know anyone in the new place to get anything, another thing to stress about.
At the moment, certain that I will not move to a medical marijuana state right now. I will probably hold tight where I go for a couple years and see if some other states here get their shit together, meanwhile living as the scum of society, a pothead piece of shit criminal who "needs" his "medicine"... fuck you (you know who you are).
Glad I made the trip to see him a month before he passed. While it was rough at the time, I look on it later and only focus on the time with him. Same will be thought of the trip I made for his memorial service. Both were 3 day trips and 1500 miles round trip.
I have been fucked up for a while now. I think going on nearly 2 full months of using a cane. Cannot keep my balance. Right leg wants to drag at times, more often as the day gets long. Difficulty getting in and out of chairs. Hands and feet are getting cramp spasms at times that cause them to curl in, really fucking painful. Getting 'the hug' and waves of pain. It goes on and on every day. Where is the 'remitting' part???
Yesterday I had what felt like three sets of hands grab my leg and pull it down. That has still left my leg muscles sore and aching.
It goes on, I know there's something big that I am forgetting (there's one). I called my neuro and we have played phone tag for a week now... I am assuming there is nothing he can do except offer me pills. I wont take them so the calls are for record purposes. If I have to file for disability at some point, there is a record of my
I am moving to another state in the next month or so, the decision where, and the impending move has been very stressful. I know its not helping my body get right.
There is something that I had my heart set on doing while I lived here that I will not be able to do because of time and finances. It was something important enough to me, as a grown man it has brought tears to my eyes.
I am struggling to save every penny I can for moving. This will require that I go without cannabis for who knows how long. I wont know anyone in the new place to get anything, another thing to stress about.
At the moment, certain that I will not move to a medical marijuana state right now. I will probably hold tight where I go for a couple years and see if some other states here get their shit together, meanwhile living as the scum of society, a pothead piece of shit criminal who "needs" his "medicine"... fuck you (you know who you are).
Wednesday, July 4, 2012
Home
The house I rent is tied up in the landlord's divorce and I have a couple months to move. I wasn't planning on moving until spring or summer next year. The timing couldn't be worse with recent health issues and pending MRI.
I am torn between staying in my region or making the jump to a state that supports medical marijuana.
Staying involves a continued distaste for the area and locals and dealing with less than ideal weather.
Leaving involves moving 500-1000+ miles, being out of reach from family, and increased moving cost.
The thoughts of having a talk with the cellmate about her escape are persistent. She needs to be shown the way to escape here.
I think regrets will settle in with either decision.
Today many Americans are celebrating some form of independence, I am reminded of my lack of.
I am torn between staying in my region or making the jump to a state that supports medical marijuana.
Staying involves a continued distaste for the area and locals and dealing with less than ideal weather.
Leaving involves moving 500-1000+ miles, being out of reach from family, and increased moving cost.
The thoughts of having a talk with the cellmate about her escape are persistent. She needs to be shown the way to escape here.
I think regrets will settle in with either decision.
Today many Americans are celebrating some form of independence, I am reminded of my lack of.
Sunday, June 24, 2012
Crossroads
After talking to my neurologist, I have decided to wait until I get an MRI before switching to Tysabri.
I am applying for some financial assistance for the MRI since I am uninsured right now.
I cannot find documentation anywhere of someone switching from Gilenya to Tysabri. Enough people have MS that someone must have taken that treatment path, but Gilenya is so new that I cannot find anything documented.
My doctor says none of their patients have done that. I called Tysabri and the navigator said she is certain someone has switched like that but she had no documentation.
My doctor said I should do a two week wash out before switching from one to the next, and doesn't share the same concerns I have with switching from one immune suppressant to the next.
Before starting Tysabri, some blood work is required to test for the JC virus. If positive, your chances of PML (Progressive multifocal leukoencephalopathy) are greater. PML can/will cause disability or death.
As I have stated before, I have lost all fear of death, but the fear of disability is there. I cannot and will not live as a fucking cripple. That will be when my time is up...
One of the main side effects of Tysabri is depression. I have read many people reporting issues with it and I really cannot afford to add more to this mind. I am on a steady plateau right now, where I am not happy nor really sad. I am just here getting it over with. Don't ask me what that means...I am just here, wasting space, taking resources better used for people doing something with themselves.
Every day for a long time now has started with "Whats the fucking point?"
Can anyone tell me what the fucking point is? I have no kids, no love, no assets, most of the family is nearly dead, and daily living is a struggle.
I am sick of hearing some bullshit about living for the love of a fictional being.
I was talking to grandmother who is very religious, and I mentioned being unlucky, and she said "There is no such thing as luck, God has control of everything", and that "everything happens for a reason to make people better". I told her I don't feel better, and that I cannot foresee any possible reason to get getting MS. She didn't have shit to say except "we just need to trust God and his decisions". Are you fucking kidding me?
She still thinks of me as a believer, and I will let her think that. As bad as religion has been for the history of this world, with the senseless crimes, killings, etc.. all in the name of God or some religion.
But without it...fuck, I almost think we would be worst off. Humans needs to think there is an eternal consequence to their actions.
Anyways, I will get the MRI if I get approved for financial assistance, don't even want to think about what I will do if I am not approved.
The MRI will have contrast so I will have an IV put in...with the needle phobia, I do not know how that is going to work. I was sweating on the phone with the doc talking about it, as well as my last MS meeting talking about it. I am fucked in the head and need to figure that one out. I have not seen the last of needles in my lifetime...
Tysabri will not happen until an MRI is done. Even then, I am reluctant. I am quickly running out of options. None of the disease modifying drugs have worked so far, and none of the symptom management medications have worked either... I have a feeling I will end up being some fucked up rarity where the medications simply do not work and I am (further) stuck in the downward spiral.
I am applying for some financial assistance for the MRI since I am uninsured right now.
I cannot find documentation anywhere of someone switching from Gilenya to Tysabri. Enough people have MS that someone must have taken that treatment path, but Gilenya is so new that I cannot find anything documented.
My doctor says none of their patients have done that. I called Tysabri and the navigator said she is certain someone has switched like that but she had no documentation.
My doctor said I should do a two week wash out before switching from one to the next, and doesn't share the same concerns I have with switching from one immune suppressant to the next.
Before starting Tysabri, some blood work is required to test for the JC virus. If positive, your chances of PML (Progressive multifocal leukoencephalopathy) are greater. PML can/will cause disability or death.
As I have stated before, I have lost all fear of death, but the fear of disability is there. I cannot and will not live as a fucking cripple. That will be when my time is up...
One of the main side effects of Tysabri is depression. I have read many people reporting issues with it and I really cannot afford to add more to this mind. I am on a steady plateau right now, where I am not happy nor really sad. I am just here getting it over with. Don't ask me what that means...I am just here, wasting space, taking resources better used for people doing something with themselves.
Every day for a long time now has started with "Whats the fucking point?"
Can anyone tell me what the fucking point is? I have no kids, no love, no assets, most of the family is nearly dead, and daily living is a struggle.
I am sick of hearing some bullshit about living for the love of a fictional being.
I was talking to grandmother who is very religious, and I mentioned being unlucky, and she said "There is no such thing as luck, God has control of everything", and that "everything happens for a reason to make people better". I told her I don't feel better, and that I cannot foresee any possible reason to get getting MS. She didn't have shit to say except "we just need to trust God and his decisions". Are you fucking kidding me?
She still thinks of me as a believer, and I will let her think that. As bad as religion has been for the history of this world, with the senseless crimes, killings, etc.. all in the name of God or some religion.
But without it...fuck, I almost think we would be worst off. Humans needs to think there is an eternal consequence to their actions.
Anyways, I will get the MRI if I get approved for financial assistance, don't even want to think about what I will do if I am not approved.
The MRI will have contrast so I will have an IV put in...with the needle phobia, I do not know how that is going to work. I was sweating on the phone with the doc talking about it, as well as my last MS meeting talking about it. I am fucked in the head and need to figure that one out. I have not seen the last of needles in my lifetime...
Tysabri will not happen until an MRI is done. Even then, I am reluctant. I am quickly running out of options. None of the disease modifying drugs have worked so far, and none of the symptom management medications have worked either... I have a feeling I will end up being some fucked up rarity where the medications simply do not work and I am (further) stuck in the downward spiral.
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