Monday, May 28, 2012

Update 5/28

Days following the last post my body took a turn.
Back muscles locked up. I could feel them tighten in random spots.
Leg muscles tightened up, felt light cement shoes.
I was forced to start using the cane...
Could barely sit at my desk to work, and sleeping felt like laying on rocks.
Being out of smokable cannabis, I took multiple muscle relaxers and pain pills to try and find relief. The pills worked for one afternoon, but that night and following days, I felt nothing when taking them.
After a few days of no effect I dropped them. Bowels and bladder were a mess. Appetite was gone.

A week of this passed before I got my hands on some cannabis. I finally felt some relief. It took a couple days before some things went back to normal, but there was a quick change to the back muscles and spasms.
Legs are still week, but I think that is mainly due to a week of constant muscle spasms that were nonstop.
I have been using a cane around the house, the few times leaving the house I take my time and go without it.
I will and do use it when I feel the need.

Had a moment smoking outside. The clouds opened up, the sun and the heat came down quick. I quickly felt glued to the chair, could not lift an arm or leg. Clouds came back and I made my way inside, washed out. Caught me off guard as it had been cloudy and kind of cool out all day.
I will take more precautions on leaving the cell.

Lately I have been finding peace in time spent alone, versus the inner turmoil when the cellmate is around.
I keep telling myself to do something because it is bad enough having MS, but I live with it and with many regrets.

Watched deer walk through the back yard grazing as I wrote this post.

Wednesday, May 16, 2012

Update 5/16

I don't know the exact day I was told, but it's been a year since I was diagnosed (give or take a week or two).
What a shitty fucked up year it was. It made me laugh at Atlas.
I don't have many thoughts on hitting a year anniversary. Time has moved along pretty quick since then.
My days are long but the weeks, months, and years are short.

Spent some time at the shelter last weekend. This trip I put a lot of thought into fostering a dog.
Found a dog that had been there a couple months. I asked about fostering but they said they pick the dog that will be fostered... I wish I would have asked if I can request a specific dog. I will call this weekend and check. I already spent time with this dog, and I am going to be picky on what dog I bring to the house. After all I have to take care of it. I want to foster a dog that has a calm demeanor, something older and well behaved. I don't have the energy for a hyper, yapping, trouble maker. You don't want to fully (re)train a foster dog. My home is just a place to get out of that cage and be with people. Its a short stop in its life.

Cannabis has been in the MS news lately. When the news broke of a new study that concluded, seemed like the report made it everywhere. I am still seeing articles popping up each day in my MS news feed.
It's nothing we didn't know already, but this time it comes from a credible source. Maybe lawmakers will take attention to this study.
I can guarantee some right-wing piece of shit looked at the headline, scoffed on it and went on their way to the obituary for a laugh... Until it personally affects them or their checkbook, the politicians DO NOT GIVE A FUCK. If you tell me you want to get into politics, I will think of you as a power hungry prick. Politicians are getting as useless as guns. They only serve one purpose.. killing. (I am in pain, and a criminal because of it. Excuse me for being cranky)

I got my hands on almost a pound of cannabis shake/trimmings/leaves. I made two types of tinctures with it. Tincture is a herbal whatever that you store in a bottle with a dropper and take drops as needed.
One was made with Everclear (pure grain alcohol), and the other was made of vegetable glycerin. 
The alcohol one is rough to take. The Everclear is strong and it burns your mouth. I have to dilute it with water, and then I have to take more.
The vegetable glycerin came out nice and sweet.
I am still playing with the doses to figure out its potency. The alcohol tincture will likely just be given away. The taste is not worth the relief.
I still have some stuff left, I will make hash with the rest of it. I am told as long as I share some of what I come up with, I will have access to these free trimmings.
Next sack will be used for making cannabis cooking oil.

Dealing with weakness in legs, and in my hands. Took a while to get out bed this morning. Legs did not want to stand up and hold any weight.
Battery in my car died the other day when I made a simple trip to bank. Had to make 5 trips back and forth to a nearby Kmart to get a battery and tools to replace the fucking thing. Each trip was alot of walking, and carrying shit.
I wont go into details, but it was one bullshit thing after another, so much that I got to know the cashier/manager by name.
Anyways, after all that walking, I was spent. I was fucking useless. My legs wouldn't move. Luckily my shower is handicap accessible because I could barely stand in it...
I need my hands more than my legs and they have been rough lately. Cannot type a sentence without erasing half of it due to mistypes.

But hey, who am I to complain right? How dare I moan for one second when there is people with no legs or arms.. I need to be so fucking chipper that I'm whistling "Zip-a-Dee-Doo-Dah" out my fucking asshole. That's what they say...

Monday, May 7, 2012

Update 5/7

There's a few things I forgot about in the last update. Mostly random bullshit.

The end of this month will be six months since I lost my dog to cancer. I miss her dearly and I cannot recall the last day that passed where I didn't think about her. It was rough when the family came to visit. My grandfather who is 80 asked where she was. He had forgotten she died. Although my heart skipped a beat... the rough stuff was everyone sharing stories about her. (there was plenty of smiles, but reality continues to sink in)
I haven't been able to fully grasp the idea of getting another dog. When my mind gives me a good reason to get one, a million reason pop in my head not to get one...
I miss my dog.

I feel like in the last 10 years I have gone nowhere. I am actually in worse shape than I was 10 years ago, physically, emotionally and financially..
Money has been very tight, and I am back to living like I did as a 'kid'.
Back to hand rolling cigarettes, and eating shit.
The hand rolling is really not cool, I used to like it. When I was younger I was already smoking non-filtered smokes for a long time, but when money got tight, I had no problem rolling a smoke.
Now its a painful and tedious process. My hands do not work like they used to, so I am constantly having to redo my work. I need to get a little roller, my hands don't cut it anymore.
Back to eating Ramen noodles and other bullshit. Finally found some chicken on sale so I was able to get some, cut it up and freeze, but still eating as little as possible to stretch the meals out. One cheap meal that is usually good is cooking some rice and opening a can of soup and mixing it in. Cheap and filling (for the most part).
A month or so of this and I hope to be back to 'normal'

Along with the financial issues, I could no longer afford health insurance.
I had to cancel my health insurance last month, I cannot apply for it again for six months. I was already using a high-risk pool state ran insurance because no standard insurance companies wouldn't insure me...
I hope to stay healthy enough in the next 6 months.
I figured if I had an exacerbation I could simply call the doctor, explain the symptoms and they would just call in a steroid prescription. All the roids they have given my have been generics, and my local pharmacy has generics for $3.
Of course since I have thought this through, I will get completely fucked in a different way I didn't anticipate.

I was getting Gilenya for free with a co-pay assistance program, since I no longer have insurance, I had to reapply for financial aid. They said my numbers met the requirements and that some paperwork would come in the mail. It's been over a week and no paper work. I told them I was down to my last 2 weeks of med and they said that it would get expedited...
If I cannot get the medication for free, then I don't know what the next step would be.
I am not going back to injectable medications. I am already not taking any symptom specific medication.
If I lose Gilenya, I will be down to nothing. The cannabis is not affordable right now.
I am living with no relief what so ever, I cannot explain how miserable this makes my life.

I know I am missing something. fuck it.

Wednesday, May 2, 2012

Update 5/2

My mind has been to places where it did not need to be and back. MS has been beating my body up pretty good. I am getting by though.
Still continue only Gilenya and Cannabis.

Physical problems in the last month or so have been all of the usual bullshit, but one thing stood out that was really shitty... I had for about two days on and off these waves of pain that would pulse through the entire body, starting from the inside out. I could feel this shit wave of pain pulsating through me, bolts of lighting coming out my fingers, toes, and the end of my dick. As glorious as that sounds, it was not.

Had some family and friends visit for the Walk MS. Due to some hotel reservation issues I wont go into, all fucking 8 (ages ranged from 18-80) were left to stay at my house. Everything that could have gone wrong did that weekend. No bullshit, talking about missed flights, appliances dying, flat tires, food poising, it did not end until the last person left.
I am thankful that they could visit and show support, all that stuff.. and thankful they made it home safely...
Pushed it too the max every day. After everyone left, I shut it down for two full days.

Fucking IRS...

Took a bit of a break from here for a minute. I cannot possibly predict the next post. Haven't much to say. Repeating the daily shit that happens just sounds like whining. There is nothing to that. Anyone can complain.
If you buy into Infinite monkey theorem, something worthwhile might come out of this, or it might not.
I enjoy Judy's poems daily (Peace Be With You). That is consistent worthwhile writing. Thank you Judy.

I told a story here.