Tuesday, November 29, 2011

Up in smoke

While I used marijuana for recreational reasons since my mid-teens it has since turned into a necessity for me.
Marijuana helps me with the spasticity and at times depression. Pot is not a miracle drug for me, but it helps  with maybe 80-90% of spasms during use which is much better than the synthetic bullshit the doctors are giving me. My issues with the pills I'm given is they either don't do anything or they bring about a list of side effects. Most common issue I have with prescribed meds are stomach related problems including bowel functions.
I was taking Marinol for a while which was working perfect until I started growing a tolerance. I have taken myself off of it for the next few weeks and I will return to it. I would much rather take Marinol over Zanaflex.
Pot helps me get to sleep but doesn't keep me asleep. It wears off and the spasms start up again, which wakes me and keeps me up. If I had access to edibles or other forms of marijuana I would gladly take that stuff rather than Zanaflex to go to sleep and stay asleep.
I do not smoke during the day. I can and have, but its just one of those things, maybe a respect for my job. I just feel like I should be as sharp as possible. So right now I have no assistance with any medications for dealing with the spasms. I live a very uncomfortable life.

In my opinion the best way to smoke is using a vaporizer. But not one of those shitty ones that just burns your shit. The best one is a HerbalAire. It passes hot air through the herb which releases the active compounds into a vapor. This avoids burning the stuff, therefore no carcinogenics. You can use direct inhale or fill up a bag. Both ways are easy to use for MS patients who may be having issues with their hands. Alot easier than rolling and smoking a joint of lighting a bowl...

I currently live in a state where marijuana has not been decriminalized (yet).
For the past few months I had been planning a trip out west to check out some cities. But I think I have recently scrapped the idea. I cannot justify jumping a few time zones across the country just so I can get pot cheaper and legally. I just cannot make the move (nor should I have to). There are some northeast states that have decriminalized but as I enter my second true winter with MS, I am finding it harder to function in the cold, and may have to stick to warmer climates (but not too warm).
I wish the states in the southeast would get their shit together and allow people access to medicine that actually works. Even with state decriminalization, the fucking federal government continue to fuck up my life, liberty, and the pursuit of happiness.
So fuck you Nixon Ford Carter Reagan Bush Sr. Clinton Bush Jr. Obama.

In the meantime I will probably move somewhere in the southeast and continue to live my life as a criminal.

Monday, November 28, 2011

Empty Spaces

I took a week off from writing anything after the my dog died. It's been a rough week. As I stated before, I don't care much for holidays, and her death made it much harder.
I kept busy for the most part this last week. Prepared for Thanksgiving and the guests it would bring.
It was tough the first few days, cleaning up her stuff. Plenty of tears while putting her toys away and cleaning up her hair. I will probably see her hair for years to come.
My gf's parents along with her nephews came to visit. Thanksgiving dinner was nice I guess. Glutton heaven.
It was hard not to think about the dog this week. She would have been right there with the boys as they play ball outside, pouncing on the ball every time it would hit the ground or when the boys had a makeshift bed in the living room floor to watch tv, she would be up in the middle of it.
I pretty much smoked the week away, I have tried to stay stoned the whole time but that doesn't keep my mind from wandering back to her.
It's been hard to break myself of the habits and routines associated with the dog. Expecting her to be right behind you every time you go outside, being careful when opening bathroom door since she always laid in front of it, checking her food/water every time you walk out of the kitchen. Mornings have been my hardest time because she slept on her own bed near my feet and I would spend a few minutes every morning giving her love and then taking her outside to do her business. I have shed many tears in the morning over those moments.
Found myself sobbing last night for the first time in almost a week. I was just sitting at my desk thinking about her. I need to keep it together to prevent another attack but my love for her consumed nearly everything positive in this fucked up life.
There is a void in this house, and in my heart. I will forever miss Biscuit.

I was a bit annoyed with my neurologist this last week. I called Monday to speak with my doctor about what had happened to me on Saturday with the full body lock ups. They said he would call me back later that day. It wasn't until I called again on Wednesday that he called me back late that afternoon.
As a 20 something patient who had a terrifying experience with MS for the first time, I would expect some attention on the issue. I got the same answer as the on-call doctor, just take it easy. That's easier said than done.
We did discuss my issues with Celexa. Since I started Celexa, I have not slept well, I always felt nauseous, and it caused constipation. I stopped taking it on my own before the doctor called me back to try and get my bowels right. It took until Saturday (week and half after starting) before I could get some regular shit going.
The doctor agreed that I needed to stop taking it. We didn't discuss what I should take next. I know with any anti-depressants it can take a few tries before you find something that works. I also know it can take 1-4 weeks before it really starts taking affect, but I didn't have that much time. I had to shit.
I saw my psychologist on Tuesday to discuss the issues over the weekend. She was the perfect person to talk to. She is also a RN. She has MS, and she is a big time dog lover.
We went over the attacks that I had experienced. She said what I dealt with was an anxiety attack, and the lock up was MS reacting to it. We went over breathing exercises an other things to do if I feel it coming on again. It was nice to discuss everything with her, I needed that then.

I will try to get back on track with my regular posts here.
I want to thank everyone again for their kind words and thoughts regarding Biscuit.

Sunday, November 20, 2011

Take another little piece of my heart...

My 8 year old yellow lab had to get put down on Saturday. She was my true companion through everything that happened this year. I will miss her to no end.
Friday was like any other day, we played with a ball several times like we do any other day, she was loving and seeking love like she does any other day. Late in the afternoon she suddenly became lethargic. She didn't want to go outside, she didn't want to do anything. We knew something was wrong when she didn't even want a snack (this dog would do anything for a snack...)
Late Friday night she eventually came outside with me, but she ended up laying down in the yard and wouldn't get up. I had to go help her up and help her inside. I knew that dog better than anyone and I could tell something was bad wrong. She was babied the rest of the night until I had to get some sleep.
Saturday morning I woke up early and first thing was checking on her. She was already awake and not moving. I managed to get two tail wags out of her.
Took her to the vet the moment they opened. They did xrays, and a sonogram. She had a large mass that had grown and was pushing on her organs.
I authorized exploratory surgery. They found a cancerous mass that had ruptured her intestines and bacteria was infecting her body. The mass had attached itself onto multiple organs and was not going to be able to be removed.
We were left with no other decision than to let her go. It was so sudden we still are having a hard time accepting that it actually happened. We lost a daughter and a best friend that day...

This dog was special. A lot of people say a certain dog was the best dog ever, I would argue to no end that mine was in fact the best dog ever. She was the sweetest dog I ever met. Never growled or snapped at anyone. Loved every person regardless of how we felt about them.
Her passion was playing with a ball, swimming and snacks. Maybe snacks are ahead, but its hard to tell what she loved more out of the three, but I like to think that she loved us more than those things.
Her and I had a connection, there were times before and after my diagnosis, it seemed that she was trying to tell me something. She would lean up against me and nudge me for love, she did this more than ever before and during my exacerbations.
Work on Monday is going to be hard because she would join me in my office and sleep in a big chair next to my desk every day. I have many pictures of her doing that, sometimes she would roll on her back looking funny in the process. At times she would start snoring or having dog dreams, and I would have a client ask me over the phone what that sound was, I had no shame, no worry about professionalism, to let me know that was my dog sleeping next to me.

I will forever miss her.

I cannot publish this post without disclosing what happened following the decision to let her go.
We got in the car to leave at the vet, my gf and I are a complete mess. I started having this weird wave come over my body, before I knew it I suddenly could not move my hands, my face, and my legs barely moved. My mouth would not move, I was able to mumble to her that I couldn't move. My hands had retracted into a locked position near to my body. My face was in a fast twitch.  Using my legs I tried pushing myself into the passenger seat, couldn't get over without help. She quickly raced the ER. When I got to the ER, I slowly regained movement, first in my legs, then in my face, left arm, and then eventually my right arm. It took about 30 minutes, maybe longer for everything to come back. In the meantime we are waiting in ER. They took my vitals, and asked us to wait. After being in the ER (in a overflow waiting room) for about an hour, I could walk and decided for myself that I was ok. I got out of the wheelchair and left it in its spot and we snuck out a side entrance and headed home.
There were many tears on the ride home, but I tried my best to calm down. I could recognize that episode was due to the stress and shock of the situation.
When we got home and realizing this home no longer has her, seeing her empty bed, her toys on the floor, and her hair stuck to everything, it was less than a minute of walking the house I had another attack or episode, whatever its called. Again this one lasted another 30 minutes or so. I mumbled to the gf give me a zanaflex. She had to put it in my mouth and give me water since I could not move my hands. After a while I could walk but not move my hands she quickly rolled a joint and I smoked that. It seemed to help out a lot. Helped calm me down. It was one of the single most scary moments I have ever lived through. The optic neuritis this year was scary but gradually came and went over time. This thing came fast and I thought while it was happening that it was going to be permanent, and if not permanent, what were the residual affects going to be? Today I had no problems other than complete body weakness, and everything feels pretty sore.
My heart feels the worst. It is truly broken.

(photo and info removed to maintain some anonymity)

Friday, November 18, 2011


This post is going to be about sex and my experiences with sex while having MS
(and I will brag about myself before I had MS, you know for a unscientific baseline).
My experience is quite different from everyone else due to my relationship situation, but that shouldn't keep the main points and issues from being clear.
It may turn out to be very crude, but we are all adults here (I hope). This is from the perspective of a straight male.
There is very personal stuff written here, stuff I wouldn't tell a best friend.
So in the mind you go, where even I rarely go..

A lot of people new to MS may not know but MS plays a big part in having sex.
It can or will cause issues with fatigue, decreased sex drive, decreased sensitivity, inability to get an erection or vaginal lubrication. (talking like a doctor here)
Sometimes dudes cant get it up or girls don't get wet.. (better?)
In all seriousness its a big issue, among the other problems MS presents, its just another fucked up way of getting into every aspect of life, anything that could be enjoyed. It can also be another thing that can drive a wedge in between partners/lovers.

Before MS, I was a stud in the bed. I could fuck and fuck some more. Mattress sliding off the box springs onto the floor fucking. Days of stinking up the house with sweat, girl/guy cum and the occasional whiff of pot and/or cigarette smoke to be quickly replaced with more sweat/cum. Nasty, I know, but most of us have been there at one time or another, and if you have MS, and it's affecting your sex life, or you simply have grown old or tired from age... you would welcome that stench atleast once more. And of course I have had plenty of the normal run of the mill "love making" sex. But I pointed out the long stinky sex because it was no problem then, it was easy, fun, it was better than a picnic.
I don't know if it was just me or what the drive was, but all girls I dated or had sex with were or acted like nymphomaniacs, they always wanted to fuck and I would oblige. I never got into kinky shit, just loved straight up sex.

Ahh to be young MS free.....

After MS, I am a dud in the bed. I cannot fuck more than a few minutes before the fatigue sets in and I am drained. This always happens before I can get off. Current gf is easy to get off so she gets hers quick.
The sex doesn't feel the same, it just doesn't feel as nice as it always had. I haven't gotten off during sex in several months. Now it takes a blow job to get me off. (part of this is decreases sensitivity, part is who I'm with)
At times during sex the spasticity will act up, I will get tightness in multiple parts. This can get extremely uncomfortable while trying to do your thing. I found that at times I will get the spasms regardless of the position. Don't know if its due to body temp rising or what. It's not your typical cramp, over the months I have learned to feel the difference. Having sex on the side in a spooning position seems to be the most comfortable.
Our sex this year has been awkward. While she was cheating on me, she continued to fuck/suck me. After I found out about it we didn't have sex for months. Then came a day I was dying to get a load out, and masturbating doesn't do it for me. I would go on to give her some very angry painful sex for a while and it eventually toned down.
We have not kissed since I found out about her 8-9 months ago. So I'm basically fucking a prostitute. I don't love her, barely like her. The sex serves a purpose right now. Believe me, I know how fucked up that is and how very unhealthy it is.. But I am a man with occasional desires and weaknesses.
My sex drive has dropped off in the last month. I don't have the desire to fuck and get off. I fucked her about a week ago after weeks of her rubbing on me and making mention that she wanted to, I fucked her one morning just to do it. Again... I know.

Most ladies/gentlemen that read this probably already take the time and care to make sex as comfortable and enjoyable for their partner, but if you don't, please take the time to research sex and MS, and learn what the other has to go through. My experiences written are not what everyone deals with, but from what I can gather a lot do.
Sex is a very important part of any relationship, I don't care what anyone says, it is. Everyone has the desire to have that type of passion and extension of love. I hope everyone does, its natural isn't it?

So after reading this, if you have MS, talk to your partner and discuss what would make it more enjoyable. If your loved one has MS, then ask them what you could do to make it more enjoyable/comfortable. Then fuck. Fuck, suck, touch, love, whatever it takes to connect. Just do it.

Note: I did do a little editing after posting to add additional information after I thought about it more, and removed a couple details that simply were not relevant.

Thursday, November 17, 2011

Thank you.

The traffic on this blog has picked up a bit, and I want to thank everyone who has commented for their kind words.
As negative as things get around here, it's nice to see some positivity. But please don't be afraid to vent or bitch about things, this is the place to air things out. Be honest and upfront.
I see this as a Bullshit Free zone.

As I stated before and recently to a commenter, this is one of only a couple outlets I have, I hide this from friends and family that are so far away to relieve the helplessness that some have.
So what you read is what it is.

There will be a post tomorrow specifically on Sex. So put the kids to bed and enjoy some disabled smut.
 "if people don't like it then tough titty" - Jax

Whiter shade of pale

Went to neurologist yesterday, for the most part it was a normal follow up except for one odd event..I will get to that in a moment.
Ran through all of the regular checks and questions. Follow up questions about how Gilenya is working out and that I will need a follow up visit with the eye doctor, ophthalmologist to be exact I think.
Discussed the depression issues. Dr. prescribed Celexa (Citalopram). Time will tell with this stuff. Seems to take about 1-4 weeks before any changes are noticed. I noticed something wrong last night. It or something kept me up all night long, couldn't get a decent span of solid sleep. The Zanaflex usually has knocked me out and I sleep through the night. Curious to see how tonight goes. No medication is going to help my mood or demeanor if I don't get proper sleep. I understand that picking the right anti-depressant is trail and error. I will just need to pay attention to any changes or issues.

Ok, on to the event.. This has never happened before, it was the strangest thing. After the doctor visited they were going to do blood work to check my white blood cell counts and all that part of the Gilenya follow up...
When the nurse came in and started setting up, I suddenly started getting really hot, I started sweating like crazy, the nurse said I had lost all color and she was certain I was about to pass out. They put the blood work on hold for another day and made me lay down. They took my blood pressure and the bottom number (diastolic I think) was over a 100. They checked a few more times and it was still over 100. I had to convince them I felt fine to make parole. I have had my blood drawn many times this year and had IVs put in for all the MRI's with contrast... never had a problem. I did have a little chuckle about it because my dad either does or almost passes out when he gets his blood drawn. He swears its only if he sees blood, but my mom had a different take.

I was going to post Procol Harum's A Whiter Shade of Pale, but that was more a gimmick song to fit the post, and not really what I am aiming for here (but did use it for the title). I usually post a song that I am either listening to while writing or comes to mind when writing. Granted, some songs are related, but Whiter Shade of Pale just didn't fit for me, the thought was worth a "heh". Here is my favorite band of all time. When Led Zeppelin released the BBC sessions in the 90's it changed the way I listened to music.

Wednesday, November 16, 2011

Programing notes...

Quick note regarding the banner. Today Congress is looking at the SOPA bill. This is a very dangerous bill that may forever change the internet. This blog would get shut down because of the music with no questions asked...
I encourage everyone to visit AmericanCensorship.org for more information.

For most of my life outside childhood, I had lived by my own judgment. I thought of myself as a progressive thinker, not a sheep and not the status quo of "normal". Right now I would give anything to wake up "normal".

Had a visit with my psychologist yesterday, and she confirmed I am clinically depressed and she thinks it's time for anti-depressants. While I have always been against using them, I have learned to accept the fact that I need them. I need them just like I need Gilenya or Zanaflex. It's just another bullshit thing I'm putting in my body that comes with its own two page list of side effects.
I have a neurologist visit today and will talk to them about the anti-depressants.

Last night my girlfriend went out with some new coworkers to some music event. I asked that she don't drink so she can safely get home. Reminded her that believe it or not, you can have a good time without drinking.
She drove herself home, and arrived drunk. She says she only had 4 beers, in a 3 hour period. Doing the calculations she would have been around .096 (.08 is the legal limit). And if she says she had 4, then she had 5 or 6. The same shit happened last winter, she was drinking a lot and driving, and ended up fucking some loser. I feel like its repeating itself and I will be quick to deal with it. Last winter I dealt with my biggest exacerbation with the double vision and I feel like I'm going through the same thing again.
Some things are going to change around here, they have to.

I'll post an update later or tomorrow after neuro visit.

Tuesday, November 15, 2011


I miss getting to hang out with my dad.
He worked a lot when I was growing up so I really don't have fond memories of playing catch or any shit like that.
I always remember that he would only get involved really when my mom would bitch so much he was tired of hearing her and would then get on to us.
He had a stress related stroke when I was 15. He was unable to walk, and talk among other issues. I quit school and went to work to help out. In the meantime he went through rehab and slowly regained ability to walk/talk.
One of my better memories of that time was when Peter Frampton and Lynyrd Skynyrd came to town. A family friend had given us tickets to give my dad some drive to get right. The doctor cleared him to go to the show the day before the concert. I will always remember sitting in the nose bleeds and enjoying that concert with him. We would go on to see other acts in the future. He has since pretty much fully recovered from the stroke.
Through the years after the stroke he became a hard right republican. Him and I butted heads on nearly all political views. Bush was fucking the country world up and he refused to see what was not reported on Fox news.
I ended up moving out before I was 18, and that was the best thing I could have ever done.
My dad and I have never gotten along better. A couple years after moving out, we made a trip together to visit a family member in the hospital, we smoke pot the first time together on that trip. That seemed to knock down so many barriers. We even smoked in front of a state capitol building on that trip.. that was a nice memory.

My parents got divorced this year, but have been separated for a couple. After my dad lost his job due to the company he worked for going under, my mom started acting out. She would flip out quicker than normal, from what I gather she picked up wine drinking and pill popping. She started online relationships, and I don't know for sure but probably started running around on him. I tried to open up to him about the situation, and he talked to me about some of it, but I know he didn't disclose all of his feelings to me. This guy loved his wife of 26+ years and he would simply tell his kids that he was "ok". I can't be angry about how he decided to handle it... I have turned around and have done the same thing to them in regards to my MS.

After the separation he moved to another state to start fresh. He has since started dating a girl he dated in high school, she is also divorced. She is really nice and he seems happier than I have seen in years.
There are sayings about life and making circles...they are not bullshitting.
Since I moved I am 6 hours away instead of 15, but I don't get to travel much.
I miss just going over to see my dad whenever to hang out with him, maybe smoke a joint and bullshit.

When I told him that I had MS, he didn't know what it was. After I explained it he sounded like he was a little choked up even though I tried to spin it in the most positive light I could. He apologized for the shitty genes.
He came to visit while I was taking the Rebif. He insisted on watching me take an injection, he cringed when I injected and I could see the pain, concern, whatever the emotion in his face. It was a face on my dad I had never seen before. It's hard trying not to get upset about that thought. I hate MS for that.

Thought I would record these memories and thoughts about my dad.
I look forward to the next time I get to hang out with him while he tries to be funny and occasionally succeeds.

Monday, November 14, 2011

Update 11/14

MS is being a fucking dick today... Woke up and can barely walk. Almost like legs are not doing what they are told. Diarrhea all day, and no matter what I try, I cannot get warm. Most parts like hands and feet are icy today and don't want to move much. Its pretty warm at 65 out today, but feels -10.
Spasms have been pretty bad during the day time leading up to this bullshit. They have been steady and unrelenting. My usual forms of alleviating them have failed, they are bad enough that pot, muscle relaxers, and stretching do nothing.
My Zanaflex seems to help with me sleeping and doesn't wake me up. I haven't completed my titration schedule yet, that includes taking it for 2 weeks before going to bed before it's taken during the daytime. But I might go ahead and take one anyways.
The spasms in my legs range from moments of irritating twitching, to very painful "pulls" where it can feel like the muscle in the leg has been pulled from running or whatever.

I need to figure out what has brought this on... don't know if it's from the cold weather or from some stress lately. Or, it simply could be MS being its normal self shitting on me.. I am not a scat man.

Friday, November 11, 2011

Letters to MS

Came across this letter today on Letters to MS
It really wrapped up alot of emotions I have about MS.

Here is the full letter. Aside from some minor differences this hits the nail on the head.

A.L., NJ, dx’ed 2005

To M.S.,
You blew into my life nearly six years ago, wholly uninvited, and you stole the last half of my senior year of college.
When I should have been finishing my last term and saying my goodbyes, I was instead waiting for my double vision to cease, getting MRI after MRI, buzzing with corticosteroids, trying to make peace with injecting myself every day for the rest of my life. Oh, yes, and crying…. there was lots and lots of crying.
When those doctors crowded around me that January day and told me what was wrong with me, the air went out of my lungs. You snuffed out whatever feelings of invincibility had survived past my teens. You reduced a happy and otherwise healthy 21-year-old to a fearful child. You made me anxious of my body’s every twinge. You drowned me in panic with thoughts of a life spent in a wheelchair.
You made me afraid. And for that, I will always hate you.
I hate you because no matter how fast I go, I can’t outrun you. You’re always just a step or two behind, breathing down my neck to make sure I don’t get too comfortable.  You’re a tireless enemy who only feigns surrender.
Of all the things for which I hate you, however, I hate you most for the look on my mother’s face when I told her what I had. When I said “multiple sclerosis,” her heart cracked. All she could say was “no,” and I watched her literally sway with the pain of it. If only for that single memory, for the look on her face that I will never forget, I fucking hate you. And for every moment you’ve taken away from her since because she’s spent it worrying about me, I hate you more.
I hate you for isolating me from my peers, who can live lives with just conventional worries.
I hate you for the hours I’ve spent in MRI machines trying to lie perfectly still, worrying what the results will say.
I hate you for giving me secrets to keep — from new friends, new employers, new love interests. I hate you because anyone I date seriously ultimately has to learn that I that I am much more flawed than normal, that I’m out-of-the-box defective. I hate you for making me, at times, feel less worthy of another’s love because I don’t ever want to become a burden.
I hate you for making me hesitate to ever plan anything too far in advance.
I hate you for making me fear becoming a mother — for the fear of the guilt that would swallow me if my child couldn’t skip out on these bad genes…. knowing I could have prevented him or her from ever having to stare down the barrel of a life with you in the sidecar.
I hate you for so many more things, but I’ll stop now to tell you that, to your chagrin, you have not wrecked me in these six years.
You’ve certainly changed me, worn me emotionally — and being the merciless, caustic thing you are, I’m sure you’re not quite done with me — but I’m still here, still kicking, and I‘m pretty tireless too.
I just wanted to make sure you knew that you will never define me.

Relationships and other shit

I am fucking depressed, more so than usual. My relationship has been at the point where we rarely talk. We will sit on the couch with neither saying a word for a couple hours at a time. Any car rides are silent. I don't have anything to say to her, and she must not have anything to say to me.
We haven't had sex in a couple weeks. I have no sex drive right now at all. I can tell she wants to, she will rub on me and make mention but I don't follow it up with any action. I just don't care to fuck right now. I really don't think its her (when it usually is), you could put any pussy in front of me and I wouldn't mess with it. I assume that coincides with the depression I am dealing with right now.
I really don't want to take antidepressant medications. I hate that I am taking Gilenya and Zanaflex as it is. I would always skip the pills and just rest off a headache. I am not a pill person.
I don't drink anymore, for a few reasons; I lost my taste for it a few years back. (I loved hard liquor, but never liked beer). Gilenya causes liver issues. And the biggest reason I don't drink is the girl I dated for 10 years became an alcoholic. I sat by for years enabling her to do it too, and I hate myself for it. I would go get her booze when asked and worst of all, I didn't tell her how big of a deal it was to me until this year. She has since realized her addiction and is working on it. She only drinks on the weekends. But she drinks every chance she gets like if we go to a friends house and they offer a beer, she will never turn it down.
I knew it was out of control when she would stop by the store for a case of beer on her way home and would drink one or two on the way home. The store is about 5 mins from the house.
I was driving my car after she had borrowed it and there was an empty Four Loco can shoved underneath the driver seat. What the fuck. Even when I used to drink, I never would drink and drive. I left a party one time drunk, went to a parking lot down the street and slept for the night. I have zero tolerance for people that drink and drive. Its some of the most selfish bullshit you could do. The chances of getting into an accident are high, and the fact that you might hurt or kill someone innocent is sickening, all in the name of getting a fucking buzz...

Matt from Matt's MS has been going through another exacerbation. I feel bad for this kid. Seems like he hasn't gotten a break from the MS. Hope he gets well soon. He had a post the other day where he talks about his loneliness. It certainly made me think a bit. Made me wonder if I didn't have her around here if I would slip into some kind of I don't know what. I really would be concerned with dating. Every girl I have dated was really met through mutual friends. I don't have many friends here, and almost all of them are looking for someone themselves.
I am not into the bar scene, or the downtown area for that matter. Don't know where you even go to meet anyone anymore. I don't have a facebook account and crap like that. I really don't see myself as an online dating person. But I will tackle that issue if/when it comes. But it has been thought when it comes to the idea of sending this girl on her way.
When you start dating someone, when do you bring up MS? Its certainly not first date conversation material.
You almost feel like you need to mention it if it's something that will affect sex (if it affects you) to save some embarrassment.
Sex is a whole 'nother issue. I felt like I was in my sexual prime until the MS and fatigue kicked in. I would have every bit of confidence needed. But now that has all changed.
I could see a major confidence issue in myself since I was diagnosed, but that was compounded by a cheating girlfriend. 

So the burning questions in me that have no answer until it actually was to happen...
If I were single again, how would I find someone?
How would she be able to understand/care for/love who I am now?
How will I deal with a girl that wants children when I feel that time has come and gone?
How can I give a girl a proper fuck now like every person wants?

How will I find the exact replica of who I am seeing now without the alcoholism/cheating?
Thats a fucked up question to be asking. I ask myself that question, I have to wonder why can't we work it out, we can try and eliminate those things. Well the cheating cannot be eliminated. Its already happened. The months of lies and trying to juggle that bullshit with the first major exacerbation I had has left me very sour about the situation. I seem to be hard on myself for not kicking her out right off the bat, but I had double vision, and couldn't drive, I was scared. And now that my vision has come back, I continue to let her live with me.. I am fucked. The whole situation feels like it happened yesterday, and it's been 6 months.
The alcohol is being dealt with, but I would like her to go to AA. She wont go mainly because their idea of sobriety is never drinking again, and religion is used lot. She is not religious at all and would never give up drinking for good.
I would feel like a dick doing it, but I have thought about giving her an ultimatum regarding the drinking and going to AA. I don't want to force anything on anyone. I will stand up for things I feel are right and wrong but it's not my place to wag the finger. I only do so when I feel its absolutely necessary.
Something to think about.

Anyways this turned into a jumbled mess of thoughts, not much structure there or advice for anything.

Update 11/11

Zanaflex seems to be working well. I am still on the titration schedule of just taking one before bed. It knocks me out quick and I sleep through the whole night without waking to spasms. Seems that these good nights of sleep are helping me get up about an hour before I used to because I am sleeping through the night. Legs do feel a little weak in the morning. Zanaflex is known to cause muscle tone issues over time so I will need to ramp up my work outs to counter that. After 2 weeks of taking Zanaflex before bed you can start taking it in the day, but I probably wont as long as I have some pot to smoke. I don't normally smoke during a work day. Maybe on a slow friday or if I'm hurting real bad. Most of the time I will just wait until I get off work. Its not that I get so stoned I can't work. I just like to feel as sharp as possible when I talk to customers. I already have some cognitive issues at times, don't need to add to it.

I have a post regarding relationships and MS in the works.

Monday, November 7, 2011

An attempt to answer a question.

I got my first comment and question and I have been racking my brain trying to figure out how to answer it. The question was "What can other people do to make someone with MS feel better?"
This question if I was asked in person would branch out in me having multiple follow up questions.
MS is such an individual disease that there is no one answer for any question regarding MS. Even something so broad as "Does MS suck?" would get a varying degree of answers ranging from "Yes" to "No, its made me who I am today" or some horse shit like that.
So how do I answer that question?
Let me try and break it down into sections or topics. I will just wing it as I type.

I am not very happy so there is not much that someone has been able to do to make me happy. I refuse manufactured drugs to make me "whatever normal". I am currently seeing a psychologist that has MS. That person has helped me a bit with being able to talk about the relationship and MS stuff that has happened this year.
So talking to someone, communicating with someone with MS can be very helpful.
I was given my diagnosis over the phone while I was alone. I had no one to talk to. It would have been nice to have someone at that moment.
My visits with the psychologist have been reduced to once a month after 3 months of visits because the Dr. feels that I am mentally better now than when I first walked in. I have to agree.
So communication is a must. Talk to the person or at least let the person know that you are available for them any time.
I get calls from some family members at least every 2 weeks and it's nice to hear from them, but they get the same bullshit every time that I'm fine.
-Knowledge. I cannot stress this enough. Know shit. If you are a caretaker for someone with MS, know what the fuck is going on. Know how the disease works and treatments for it. The girl that lives with me didn't know shit, neither did I, BUT I hit the net and learned everything I could. I asked her 5 months after I was diagnosed to tell me what she knew about it.. She couldn't tell me shit. She has since learned some of the basics. But it would be nice for her to start a conversation one day regarding some new treatment or something like that. I don't really even tell her what I know. I'm not a fucking text-to-speech program. She knows how to read. I won't apologize if that seems harsh, she is a smart girl who knows alot about everything.
-Humor. I really do think laughter is the best medicine sometimes. During some of my lowest of lows I found some humor to perk me up a bit. While it takes some really funny shit sometimes to get me to laugh anymore, its nice to see something try.  

Feeling better can obviously come down to purely physical reasons. Numbness or spasms can put you in a bad mood for the day or more. I know I would have nights of loosing sleep due to spasms or The Hug keeping me up and I was cranky the next morning.
There is not much outside help from this other than trying to make the person comfortable.
Being clear with the neurologist can help determine if additional steps are needed to deal with a certain problem.
I was not sleeping well, I would get most spasms at night and after a few tries I have been put on a medication that finally helps me sleep and deal with the spasms. (Zanaflex)
I recommend stretching throughout the day. I haven't started it yet, but Yoga is supposed to work very well. I got a Yoga for MS dvd for free from Biogen.
 -Sex.(if applicable) The physical branches out to stuff like sex. I just want to point out, when having sex with someone with MS, be mindful of how comfortable they are, and remember fatigue creeps up anytime, even when your having fun.
For a male the fatigue issue can be one of the biggest confidence/moral crushing things about MS and sex. To go from lengthy sessions of passion to end up in a couple mins of tiredness nothing is bothersome. Usually I cannot get off before the body is too tired to go on. That is frustrating on multiple levels.
(I never thought I would write about sex here but there it is. Maybe it will get a full post one day)

Ok, so I tried to answer that question but it seemed to go off the rails a bit there. Not very organized answer. Again that kind of question is answered with a load of questions. Above is a run down of some things I guess that helped me.
In short they are:
-Having someone to talk to which included family/friends and a psycologist
-Physical comfort. Its nice to have someone help when things are hard to do.
-Sex. Nice if done right.

I'm sure this list will get longer or I will have more to say after additional time to think about it, but on November 7th 2011 that is what's come to mind.

The Wall (aka ticket prices)

What a disappointing morning. Roger Waters is doing The Wall tour again this year, last year he did it but I was in the middle of moving when he came to a city nearby. Presale started today and the cheapest tickets are $115 each. I just cannot afford that.
Last two times I saw him they were $25 each but they were lawn seats at an amphitheater. Because of all of the theatrics involved in this tour, it's all indoors. 
A couple of my favorite memories are while going to see Roger Waters. I saw Waters with my dad when I was about 17 and that was nice, and I smoked Pot with my mom the first time at a Waters concert sometime in my 20's.
The last show was nice, I bought tickets for my parents (and gf) and we all went. Waters was doing the Dark Side of the Moon tour. Aside from all of the college kids there getting smashed and loud it was a nice concert. One of the last times my parent's seemed happy together before their divorce years later.

Over the years I tend to miss out on a concert for one reason or another and can't shut up about it later in life.
There are only a few that really stand out. When I was 16 or so The Black Crows with Jimmy Page were on tour, and at that same venue The Who was playing the next night. Ugh I wish I could have made those two nights. I was willing to sleep in my jeep at the time if I could just pull together the money. Busing tables and washing dishes at the time wasn't paying much.
I also skipped going to see Jethro Tull do an acoustic/electric set. That was right around Christmas and couldn't get the funds together.
And recently I missed Johnny Winter play at a small club. That was due to not walking well and unable to stand for any extended amount of time.

Life on the Road

I always thought as a youngin' that it would be fun to do some RV traveling but as I have gotten older I have gone from always wanting to drive on trips and skip the airport bs, to not wanting to make some trips period.
Took a 12 hour trip this weekend (6 each way) and it was very hard to sit in the car that long. Made stops every 2 hours each way to stretch and move but trip was painful. My back is throbbing in pain. Seems like I can feel my heart beat in my lower back. I have been on a regular schedule with chiro and luckily have appointment today. 
Got to visit with some family which was kind of nice except an uncle was put in hospital Friday while he battles cancer, so half the family was at the hospital and half at his house and would rotate to keep the traffic down.
Despite the situation it was nice to see some family for the first time in years. It became clear I do have some cognitive issues, I had a hell of a time remembering some names.
My MS was only brought up one time, I quickly spoke about it and changed the subject. I was standing over my Uncle that has less than 3 months to live. Seemed like bigger things were going on.
I was disappointed to see Alabama lose to LSU 18 6 to 9. Bama beat themselves with 4 (5?) missed field goals. Oh well, it's just a game.

Got my first comment on a previous post. Of course I got a question that was tough to answer, it was roughly based on how you can make someone with MS happy/unhappy. Its a good question, and I should be able to answer having MS... but I am drawing a blank. I haven't been able to pinpoint in my life what makes me happy/unhappy (to an extent, some things that have happened are glaring issues but unrelated to MS). At this second I look at my old dog sleeping and snoring in the chair next to me and I guess that makes my happy but it really seems temporary. I turn my head and I am faced with the reality of having to work to survive. Having back, leg and arm pain. Numbness in various parts. It goes on, and with every step I have a monkey on my back reminding me of MS.
Since I have trouble pointing out what makes me happy I can probably point out what makes me unhappy easier. That will be another post. What I will probably do is just list what this girl has done wrong to me and that will answer some things. But that would be a waste, its simple common sense stuff like don't cheat on someone, or endlessly lie to them, and if they have MS with various issues, don't tell them they are making it up.

Friday, November 4, 2011

Music to my ears..

I do like music. In my teens I took pride in my four speaker setup (one in each corner) and collection of vinyl records. It consisted of all hand-me-down or free stuff. I loved listening to stuff like Led Zeppelin that would hit all four speakers. I got my hands on a quadraphonic version of Pink Floyd's Dark Side of the Moon. That was a great album. Didn't own many cd's but I had/have a nice vinyl collection so most music was classic rock. Classic rock is my go to choice of music. It just sounds right to me.
Live Led Zeppelin is my favorite. I don't dance, but some live bluesy zep will always get the foot tapping or sometimes more boogie out of me.

Thursday, November 3, 2011

Slept like a baby..

Got 2 medications yesterday that helped me get the best sleep I have had in a long time.

Doctor started me on Zanaflex (Tizanidine) to deal with the constant spasms.
Flexeril, Baclofen and others were just not cutting it. I took my first Zanaflex last night. Woke up a little sore but that could be a number of things. Stretched this morning to help alleviate that. The PA called me the other day to see if I wanted to try that and had quickly mentioned that I would be taking it at night but I didnt get all of the details. The paper I got with the meds had the following line:
"Start with one po qhs for 1 wk, then 2 po qhs for 1 wk, then may slowly increase by one pill as tolerated to 1-2 po tid."
What the fuck is po/qhs/tid?? I had to look it up to find its saying take it orally before bed and that I could increase to three times a day... Why didn't you fucking say so? I'm not a doctor.. The pharmacist didn't take a moment to ask if I had any questions or make sure I understood the titration schedule. If it wasn't for going on Rebif before I wouldn't even know what the fuck titration is... I have been going to this pharmacist for a few months, and I was a little bothered that they didn't attempt to go over this with me. I will probably find another pharmacist, a few months back when I started Marinol I was walking out the door when I noticed they had given me the wrong mg. They gave me 2.5mg and I was prescribed 5mg. Glad I caught that..but that is not my job.
Anyways. Took Zanaflex last night before bed and slept through the night without waking up. I still had a slight buzz from the pot but I think the Zanaflex went right to work.
I will be cautious with Zanaflex, it seems people get addicted to this stuff. I have never had an addiction (except for maybe cigarettes) and I don't want to start now..

I finally got some pot yesterday for the first time in over a month so that was nice. I always used it for recreational use but then MS came around and it turned into a need for it. My body reacts very well to it, I have little to no spasms when I smoke.
I was taking Marinol (synthetic THC) for a few months. It worked out great for 2 1/2 months but I started growing a tolerance for it, so I stopped taking it so I can start back up in a month or so.
Its ridiculous how much trouble it is to get (pot) if you don't know the right people. I moved to this town less than 2 years ago and I still miss my old dude. I used to be able to call him up any time and meet him that evening. Never got ripped off, no bullshit. I was getting my stuff from him through a family member in my teens, so I have been getting pot from him for close to 16 years. Last couple times I have made a trip to that town I have been able to call him up a day before getting there and I could always get how ever much I needed. Whereas in this town, I was getting stuff from a guy but he turned out to big a fucking dick head. Bags started coming up light and prices went up. All of these coincided with his life getting shitty. Last time I saw him to get some I was bitching about the weights and prices.. went home to weigh my shit, there was some fucking rubber bands in it balled up to help it make weight. What a fucking dick. And he is a bigger dick because we became "friends" over a year or so and he knew about the MS. I hope to see him in a store where he is working so I can loudly tell him what kind of fucking asshole he is.
Alright enough bitching about him, I have my own shit to worry about. So it's nice to have some smoke again. I just have to keep my "gf" from smoking it all, she doesn't know what no means. I'm going to stop there, and save that for another post.

Wednesday, November 2, 2011


fucking sucks..

Looking into the future...

I go to a monthly MS meeting and I seem to leave there feeling lower than I did before I went. I am the youngest member in that meeting by 15-20 years. Most of them are in wheelchairs or use walkers/canes. I feel for these people. They are positive people but you know.. I just see past it. How happy are they really? There are a few people genuinely happy, you can see it in their face, or the way they talk. Majority of them are just waiting for their number to get called, much like I am. They have the same facade that I do. Some of the husbands/caretakers almost seem worst than the person with MS. It really takes a toll on them.
There is probably 5 minutes of useful information out of these meetings. Most of the information I either already know of thanks to the internet or they are getting it from me because I am the only one that uses Gilenya.
I have attended these meetings for the last several months. I am considering not going to these any more. I feel my moral is lowered after attending. I know where I am heading and I don't need reminders. This may be misinterpreted as being insensitive or some other shit but I am only being honest with myself and how I feel.
I understand that for some people they really need these meetings and look forward to them. I however do not. I think I go because I don't currently know anyone (in real life) with MS other than these people and you cannot help but feel some sort of connection with them, but I am questioning if I really need that connection. I might skip the next one to find out if there is a void there.
Some shit happened at the meeting that I wont even disclose my thoughts here, something I need to keep to myself, this blog could really get out of hand. It involved disabled persons and interpretive dancing. I will leave it at that..

Woke up around 4:30am and couldn't go back to sleep last night. I was uncomfortable and my mind had started to run wild. I kept going back to the 10 year relationship I kind of feel stuck in. I don't feel like I love her, she acts like she loves me. I haven't kissed her in about 8 months since I found out about her cheating. I still fuck her but won't kiss her. She is pretty much treated like a prostitute in a way. I brought this up a month or so ago, and she says "who cares?" and that "kissing is not that big of a deal". Its is not that big of a deal but it's a part of affection I have not felt in a very long time now. I could kiss her if I wanted to, but I don't. I wanna kiss someone and actually feel something from it, and for that person... Something has to give. She knows I am not in love with her, I have made that clear, but she insists on trying to work it out. If I didn't have the double vision problem and lived 12+ hours from any one I know when I found out about her earlier this year, she would have been long gone. I was convinced to let her stay after my eyes were better to try and work it out. She is the only person I have let walk all over me. Maybe I just like bj's too much. I don't know.
I will have to seriously re-evaluate my life and this relationship when the spring rolls around. I need to figure if I want to stay with this girl, or in this town. I'm feeling a big NO on both at this very second.

Again another boo hoo woe is me post, but that's what these bull shit anonymous blogs are for right? Not for you, but for me to type it out so it's not swimming in my head at 4:30am.