Friday, December 28, 2012

on thin ice

I know what I need to write about and document, but for periods of time I would sit here blank, partly in confusion and disbelief, wondering why this is my story to write. Some sort of depression sets in and I have to fight back tears at times. At one time writing seemed to make me feel better but it clearly doesn't anymore. The issues still exist and are still very real after I hit publish. The numbness and the wrecked car are problems that no amount of discussion make any easier.

I decided to spend the long Christmas weekend with the cellmate's family up north. What a fucking mistake.
Two days before the trip my body starts to warn me. My left leg has gone numb, so it joins my right hand, and parts of my right side/leg. The numbness covers the leg and my left nut. I cannot express my concern of dealing with a numb dick.

I haven't written about her and will not go into too much detail, but the cellmate's mom is bipolar (family says bipolar, I say crazy bitch) and has gradually gotten worse. She has extreme highs and lows within a single day. I cannot handle her shit. She is a noise nazi. She must control the sound space around her. No two conversations can happen in the same room at the same time. No one can eat food unless she is eating because she will hear you. She is a bully. She has a history of physical violence and will threaten anyone with an ass kicking, even her own fucking mother. Its a high-stress environment that I do not do well in.

Tried to leave the area and weather was really bad but was due to get worse. Cellmate was driving and hit a patch of ice on a bridge causing the car to lose control and hit a wall. There was damage and the car could not be driven. Sat in the blizzard conditions for about an hour getting everything sorted on the phone. Got it towed, left in a rental the next day, still waiting to know what the extent of damage is. I was warned it might get totaled (gets paid off in April).
What the fuck... I am glad we are ok and no one got hurt.. but what the fuck man...


Enough of that shit. More on numbness, in the northern cold I was able to get in tune with my body some more and take note of certain things.
The numbness appears to be on the outside of my skin on the top layer (Epidermis), maybe a couple centimeters more or less, I have no idea how deep. Any pain or sensation bypasses the numb space and picks up right where it would have been (maybe in the Dermis?). So you are left with very sudden and painful feelings. You cannot feel a pinch until a certain point and then it comes at once..not sure how else to describe it. For all I know, that is exactly how standard limb numbness goes, it varies on depth.
I also have an issue if I drop my head down, it feels like a rubber band inside me has been pulled tight.
This issue came up a couple months ago but I couldn't fully figure out the weird feeling. I had lesions on my spine, and I think one has developed in an area when the head goes down that point is being moved or disturbed. I can only guess. I will bring it up with a doctor when I see one.

Application for federal insurance is awaiting approval. Neurologist referral request has been made. I will be seeing an MS specialist. I will give it their way another go since my way has not been working either. At some point, we may all just have to accept that there is no way.

Tuesday, December 11, 2012

Moved on.

Completed a move 120 miles from where I called home for almost three years. Moved to another state but stayed in the mountains in this region. The nearest major city I used to live by had less than 40,000 people there, this new city has nearly a million. Still living in the country, about 15 minutes outside the metropolis area.
I was getting a little nervous that I was not going to move until after the spring which would have been ok, I would have managed but the home I was in was up for sale and had to deal with people coming and going.
I had pretty much given up on the search after making the 2+ hour ride here several times in last couple months to view multiple places only to find some sort of bullshit problem or another. Every single place had a deal breaker. I was sick of making the drive and had decided to wait until spring. Then one morning this placed popped up, went to see it that afternoon and jumped on it. Within a week we were packed and moving thanks to the cell mate and her hard work.

The move was typical shit for me. Hired labor to load/unload and I drove..lots of things went wrong and I won't rehash the bullshit. From the morning crew being late and weak (hired 3, got 1.5) to me hitting a curb and fucking up the rental truck wheel.
Its over with, paid for and done..

It is larger than the last place which I did not want. I was ready to sell some stuff and downsize. But we got a good deal and its a nice place. The house is situated half way up a mountain side.
There is a fireplace. I have not had a fireplace in the home since I was a kid. It didn't take long before I had a truck load of wood delivered. There is a new heat pump that has not been used yet, only been burning wood. It has been very nice. I think more should be ordered so I don't run out mid-winter.We have had a fire going every single night. I have been enjoying that so far.

In the last year I have changed the way I eat. I had reached out to the local farms in my community and setup resources for nearly everything we consumed from veggies to meats and dairy. In some cases it was more expensive but in most it evened out. Much more food preparation and planing took place. We would get produce from a local stand or buy the occasional CSA box from a farm and based food for the week around the varying veggies that came in that box.
There are endless amounts of shitty fast food here and the population apparently enjoys it as they are fatter than fuck.
I have already setup my resources already for local dairy and poultry. This state allows raw milk to be sold, but you must own a share of the cow. A neighbor has farm fresh brown eggs.
I am working on the meat, there are local farms with grass fed meats available. Produce will show itself as spring/summer rolls around. I doubt I will find a nearby stand with produce that is self service and on the honor system. I had two right by my old house, I will certainly miss that convenience and trust in humans...

I researched Neurologist here over the weekend. I need to send a referral request to my old doctor and get setup with a new one here. There is a MS specialist in this city so I will make an appointment to see him as well. Maybe see the specialist once a year or so. I need to see him at least once to get an opinion on my shitty progress.

I have already reached out to my local MS groups. Since the city is so large there are five different groups (sponsored by NMSS), one is a men's only group. Before moving I had checked the NMSS calendar for the area and there is a pharma sponsored dinner at some fancy restaurant coming up, put in my RSVP for it and looking forward to meeting people in this new city.

I spoke with a guy who runs one of the meetings and he said there are some younger people in the group from 20-30 years old. While I hate for anyone to have MS I hope to meet someone my age that I can connect with.
Cannabis is another issue I have to deal with here. I hope with the number of people at these meetings I can easily get in touch with someone. I will travel a couple hours to my old town if needed but I don't think it will come to that...

Time will tell if I can get comfortable here.

Tuesday, October 30, 2012

Another year...another symptom.

This blog is one year old with 90 posts completed.
Its been a long year since I started this blog. My physical and mental state have been in decline since I started this blog.
I don't really know what I expected to get from this experience, but if I had to be completely honest with everyone and myself, it has not added anything to my life. I cannot recall writing here, posting it, leaning back in my chair and thinking "I feel so much fucking better now". At times I walk away feeling more pathetic and useless because I just finished highlighting what is wrong with me and what I have zero control over.
However. I am grateful for the relationships that have come from this blog...but honestly they do not make a single thing easier. Knowing someone else that is having more or less problems than me does not make me feel better. It worsens my distaste for life.

I have heard this multiple times and I want to throat punch someone who claims that they are grateful they got MS because it made them who they are today. Keep it to yourself and try not to rub your shit in my face. We both know you are lying.

I started LDN but only for three days. As people have warned, it can cause insomnia, sure enough each night I have taken it, by 3am I am fully awake and trying my best not to get out of bed.
Three days into LDN, I started having some severe pain in my right hand, the following day I couldn't move my hand I was in so much pain. After researching the matter, I suspect I dealt with Gout in my hand. Its a type of arthritis that attacks joints and is usually caused by high Uric Acid.
I had gone almost a month without red meat and then I had a string of 3 days straight having beef. Oddly this was good grass fed, organic beef from a local farm where you can buy some meats fresh and never frozen. Beef is known to cause high Uric acid for some.
I did not go to a doctor for blood work, so I do not know what my Uric Acid levels were.
One thing giving me some doubt is that my dad deals with gout in his feet from time to time. He swears by black cherry juice. His doctor recommended it, and he said within an hour of drinking a glass he gets relief.
I drank 32oz of that shit and got no relief. It wasn't until a couple days had passed that it started getting better each day.
Another 'fuck you' was that it affected my right hand. I use a cane to support my right side and leg.... I was fucked for a couple days there.

Alright so three days into LDN, the hand fucks up so I stopped it. After the hand got it's shit together, I had family visit me, and that pushed off starting it again on hold.
After family left I took it one night, woke up at 3am and stayed up all night. Have not taken it again since. Some people take it in the morning, and I may try that later in the week.

Right side of body has gone numb. This is only the second time that I have dealt with a half body numbness. I have had numbness in my fingers come and go but the half body numb shit has not showed itself since my first major exacerbation. It makes everything a bit uncomfortable, mainly walking. I feel like my right leg is a peg leg. I have little feeling around my knee so each step I feel like my leg is balancing on that knee and can fall out from under me at any moment.
I have that weird numb pain. How you can be in pain where its numb is beyond me and I cannot explain.

I still have not moved. Every place I look at has some sort of deal breaker. And others that don't appear to have deal breakers go fast and always before I can get to see the place.
Because I am looking to move to another city and state that is almost three hours from me, it is difficult for me to see a place on a weekday.
I had a perfect place I was going to see tomorrow but got a call this evening that someone put a deposit on the place. Since winter is upon us, my moving window has pretty much closed and I will have to stay where I am at until spring.
I really wanted to get the fuck out of here. I need a change badly. I wanted a new environment, new house, new community, new everything.
It's hard finding a place far enough out of the city that has internet and doesn't have some neighbor up in your shit. I don't want to see you, hear you or smell you.

I will eventually stop posting here, and the blog will become dormant and stale as other MS blogs have. It'll be in the mix of MS blogs that you stumble across every once in a while and the last post is two years old. You wonder how the person is doing and if MS is preventing them from updating.

Thanks for reading, now and then.

Wednesday, October 10, 2012

Finally.

Someone threw me a fucking bone.

Found out at my last MS meeting that someone there was prescribed LDN by a doctor at the same practice I go to.
I called my doctor and re-requested an LDN prescription and let him know about his own fucking co-worker prescribing it after I was told they had never a couple months ago. They also said they would not prescribe something to be used off-label (which is exactly what they/I did with Marinol).
He said its not what I should be doing for my MS and not the treatment plan I should be following, but reluctantly prescribed it anyways.

They are mailing the prescription since I do not know where I am getting it from. There is a compounding pharmacy in my town but the lady who used LDN, said it didn't work for her. That means nothing except it didn't work for her. But it makes me wonder if I shouldn't get LDN from a list of known good compounding pharmacies online. 
I will likely order it online since I really have one shot at this. If it doesn't work, I will not go through the trouble and expense to try it again later in life.

That really is all that's good in this pathetic life. Still broke, have not moved yet. Still unhappy and feel like shit.

Monday, September 24, 2012

Waste of time

Nothing here but bitching about the "vacation" I just returned from.
Earlier in the year the cellmate's family booked a beach house on the eastern coast.
I did not plan on going until I was pressured from various directions that "it would be good for me". I argued that it is not a good time with the upcoming move and that a beach was not my ideal vacation spot.
It proved exactly why I should not listen to anyone and stick to my own decision making.
This was my first vacation in two years.

We arrived after ten fucking hours of driving. The house was a 3 story tall with steep stairs everywhere. Some did not have hand rails. The house was not cleaned after the guests. We found the place trashed and the rental and cleaning company would not return calls until the next day. They never did come clean the place, we cleaned it ourselves. There is a list of issues with the house including mold that I will skip.

The cellmate and her brilliant mind thought the trip would have been missing her friend and her boyfriend.. These two are disgusting drunk gluttons. The boyfriend is one of the worse people I have personally met. He is a loud (he is hard of hearing), rude and always drunk. Every place is a bar to him and he belongs in every conversation. Aside from his endless drinking and eating, he was accused of stealing money (oh yeah, this catch is unemployed).
Three days into the visit, they were asked to leave...
I had intended on heading back home mid-week and the cellmate was to ride back with her friend, but that got fucked up because of these two dipshits.

My legs did not cooperate with the stairs. I found myself a prisoner of the third floor. Four of the six days there I did not leave the third floor.
I walked to the beach once using a boardwalk from the house. It is a long walk and has more stairs. I did not even attempt to walk on the beach since I was already tired walking to, and I use a cane and they don't mix.

The above wouldn't be so bad if I could have worked. My job position and responsibilities allow me to work anywhere there is highspeed internet. Of course the place has internet that is too slow and constantly drops. I could not keep my connections up to my office and phone system to complete any work at all.
I do not get vacation pay or sick time off. An entire week of pay...

So I just sat around, bored out of my fucking mind. In count down mode until it was time to leave. Quietly in pain and uncomfortable.
I kept it to myself. There was no point into bitching about it, I was already there. Enough drama was going on with the shitty rental and the drunks that my words would have fell on deaf ears anyways.
I was only questioned once about my lack of participation, I think the cellmate had to speak up and remind them of how useless I am.

They all smoke and eat unhealthy. I was stuck around cigarettes that I want, and shitty food that I do not want. I did not smoke and skipped multiple cheese filled meals.

If anything came from it, in my alone time I was hard on myself enough that I will say "No." when I want to.

Friday, September 7, 2012

Update 9/7


Still preparing to move. It got pushed back a month due to typical life bullshit popping up and draining $2500 from me preventing the move when it was planned.
So I have holed myself up in my office for the last couple weeks working like mad. I have managed to almost double my paychecks by putting in well, almost double the time. Working day/night and weekends.
I am even skipping a week-long vacation at a beach house with the cellmate's family just so I can continue to work and get moved. 
I know at some point something has to give, but in the present I want to move before winter rolls around.
I just hope my body can hold up and not get worse.

Still moving to another state nearby. I am going to try to continue my country living and void the city life.
I considered moving back into the city for health reasons (doctors, public transit, etc) but I decided country was going to be better for my health.
I have restricted myself to a diet of mostly organic foods, very little meat at all.
All meals are prepared when I eat them, I don't buy prepared foods or processed foods.
I have stuck to this for over a month now. Stop smoking almost two months now. I am trying.

Living in the country fits my desired lifestyle more. If I am further away from restaurants and junk food, I am less likely to eat that bullshit. Living out in the country for a couple years has taught me to plan for a week of meals and to eat much better than I ever did. Out in the country, I have access to small farms right by my house that I use for all of my produce and meats, a large local organic store for everything else.

Back to work. 


Monday, August 20, 2012

Denied

Went to an integrative medicine doctor that told me when making the appointment, they would prescribe me Low-Dose Naltrexone, but they backed off that today when I came in for my appointment (which they did not have in their computer, my name but no date. Idiots.).
Doctor said he would rather go an extensive route of checking for food allergies and attempt to reduce inflammation first before trying LDN. So he refers me to another doctor..Why the fuck did they waste my time!?!
I can only gather that it's because I am a fucking coin purse, a guinea pig, a side walk, a toilet, a fucking joke.

This was the only doctor I could find that prescribes LDN and does not charge over $500 for the first visit.
I will have to wait until after I move address this again.

It's bad enough having this bullshit disease, but to be fucking denied ways I want try to treat myself is the worst of it.
I am losing my faith in people, humanity will be dead with God.

Tuesday, August 14, 2012

Update 8/14

Quick update... stopped taking Gilenya on my own. Its not stopping the progression.
I have decided to give LDN (Low-Dose Naltrexone) a try. My neurologist and PCP refused to prescribe it to me. It was upsetting that my own neurologist wouldn't prescribe it. They said there is not enough data in the clinical trials to support its claim and that I would be taking the medication 'off-label'. Well assholes, you prescribed me Marinol at my request for spasms/spasticity and it is not designed for that, nor is there any fucking clinical studies. They trusted my word that THC works for me and they prescribed it hoping that it would ease my symptoms. If they had a thousand pens and notepads with LDN on them or some pharma rep with big tits selling it, then LDN would have prescribed.
After a week of calling around, I found a doctor that would prescribe LDN and didn't cost a fortune. Going to see an integrative medicine doctor on Monday and hope that they will prescribe me LDN. I have a local compounding pharmacy that I have checked in with. They make LDN and they send random samples of it out for inspection and quality control.

My depression has hit some new lows. Recent fights with the cellmate have been louder and more frequent. She has stated a desire to end this relationship. It is hard to say if we will move together at this point.
I still have not smoked cigarettes since I quit. It has been very difficult but I think I have it beat. I don't think the smoking has much to do with my attitude. I just really could use some space for a little bit. I need a vacation or something.

I am not the same person I was a year ago and I need to figure out who I am now. So far I really do not like him.

I will update a few days after LDN if I get to start it...

Saturday, July 28, 2012

Update 7/28

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.

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 my demise 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).

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.

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.

Wednesday, June 20, 2012

Update 6/20

A lot has happened since the last post, been way too busy with various bullshit. Still walking with a cane. I have tried to leave it at times but I will lose my balance or I have trouble getting out of a chair...
I put in the request to start the Tysabri process. Contacted Tysabri about the financial assistance program so information is coming in on that. I will start it after they do the blood work to test for PML. I was sweating last night thinking about the blood work and infusions... I don't know yet how I will deal with the needles...

Last Wednesday I received word that my ailing 80 year old grandfather (last grandfather I have) was diagnosed with cancer and that it was in multiple locations.
He had just been up to visit me in April, but that trip was hard on him. I wanted to see him before he got in bad shape. I would not be able to visit him once he turned for the worst.
I left the next day and drove 14 hours (airlines are too expensive). It was a rough ride but got it done.
First night, storm rolled in and power was out from 2am to 10am. During that time there was panic because there was barely enough oxygen to get him through that time span. Next morning the water well quit so there was no water... There was plenty of small bullshit but the biggest problem was the heat. Fuck, was it hot. 95 degrees mid day, and 90 at night. Where I live, it had been in the 60's for the week before the trip.
It was humid, more than I remember. I grew up in this town and don't remember it being as hot and humid. I was swearing at myself every time I went to have a cigarette, and it never failed that my Grandfather would go smoke shortly after I would come in, and looking to spend every moment I could with him, I would follow him and deal with the heat more.  
I left Sunday and headed home. Another rough ride, rougher than the way there, but that is not unusual.
I will miss him dearly. He is a very nice guy, never raised his voice at me ever. If he ever got angry with me, he never showed it.

A couple days after getting back, I had to make another trip that was planned. Met my dad in a city that is about 4 hours south and took him to a concert on his 50th birthday. It was a lot of fun, concert was great.
My sister flew into that town the next day. We ran around town, enjoyed some food and took a tour of a  major league baseball stadium.
One thing I want to mention about this tour... I didn't think anything of it until my sister and cellmate raised hell about it later, but the tour guide, after I had already managed 3 flights of stairs, I was asked in the middle of the tour if I need an elevator "because I am clearly having trouble with the stairs".... well no shit bitch.
I was just happy to get the option at the time since the next step was 8 flights of stairs down to the bottom of the stadium (got to go in the dugout!). She whispered to me that she preferred the stairs since her knees are bad. The girls were more offended and pissed than I was. 
My sister rode back with me with my dad following and they visited at my place for a couple days.
It was a nice visit, I don't recall a single thing going wrong. The weather was still perfect.


Life in prison sucks. My cellmate can be real sweet sometimes, show a loving/caring side, but then a switch flips and she is the most spiteful, hateful, bitch I know.
The time spent with the bitch overshadow any time with the sweetie.
I have had the feeling for a long time that this will not work out in the end. That becomes prevalent when I think of my future and mull various options, that I always think of it in two parts, with her, without her.
I live with enough regrets that I must be careful about this decision. I am at a crossroads with moving across state lines again. I am tired of the bullshit games. I will not move her with me if this is not going to work.
I have an opportunity to move to a new state and begin a new life (with the fucking MS).
If I move with her, I am afraid it will only feel like transferring to a new prison.

Friday, June 1, 2012

Update 6/1

Talked to my neurologist, he thinks the Gilenya may not be working considering the number of exacerbations/flare ups that I have had on it. He would like another MRI done since it has been a year.
Because I have experienced a slight turn around from the initial issues with this current flare up, steroids are not necessary, although they would have put me on them had I called it in right away. Just as well, didn't want to be on that shit.

The next therapy he recommends for me is Tysabri. It is a once a month infusion. Yet another treatment with needles (IV), which I seem to lost my ability to handle.
I am at a crossroads with this. Each therapy has its own way of fucking you up in another way, or in most cases, does nothing to slow progression of MS.
Death is the only cure for this bullshit disease...with my shit luck I will likely live to 90.

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.



Saturday, March 24, 2012

Death Row

I am in prison and on death row.
I am deteriorating in my cell.
Despite time in the exercise yard, I am getting weaker by the day.
I fuck my cellmate who I loathe.
I dream of an escape but I am too weak.
The judge that put me here can go fuck himself.

WAKE UP YOU FUCKING ASSHOLE!

Monday, March 19, 2012

Update 3/19

I will always remember the quote, but not who its from...
"Some days you're the pigeon, and other days you're the statue."
For me its more like "Some people are pigeons and others are statues"
I am a statue. That's not very deep, but I remember the quote at times, and find myself twisting it to fit my shit.

My problem was is waking with left foot problems. I don't know if it is MS related or not. I cannot turn my ankle or put weight on it. Woke up one day more than a week ago and fell trying to stand on it. The day/night before I did not jump, twist, run, nothing. I cannot tell if it is swollen. The ankle, specifically the Achilles tendon are tender to the touch. The slightest movement aside from a flat foot stance is extremely painful.
After about 4 days it cleared up, felt much better. I was thinking I had just a random bullshit problem and week.
Then I woke up again with the same problem. What in the fuck.
Since it is random, cannot explain why its happened and what the problem is exactly, I am left to wonder if it's MS fucking with me.

The insignificant thing recently is my fridge died. It was nice enough to die after filling it up, and the freezer was full of meat that was just ground up. Since I had just been shopping and was eating all fresh stuff, the freezer got warm for a day or two before it was even noticed. Took a couple days before I could get it replaced. Lost nearly everything but the vegetables.
Anyways, not a huge deal, that's fucking life for ya, just being a dick.

Started various vegetables and cannabis seeds for the garden this year.  I guess that's the only positive I have, although I am aware it only means more work and another thing to stress about later. Wish I could just enjoy the process from seed to harvest but my head won't allow it... I always turn it into a question of "What the fuck is going to go wrong now?"
Life has become when, not if.
"What you have just heard was not fiction, although in many of desperate moment I most certainly wish it had been. It's over for now it seems, or at least until yesterday begins again tomorrow"

Wednesday, March 7, 2012

Update 3/7

There is a large tree in the back yard that is usually late to bloom, and is ugly in the fall. Green leaves turn brown over night and just fall. Woodpeckers have been working on this tree for many years, as there are lines of dots all over it.
Recently I watched a small woodpecker work on the tree, and occasionally some small birds would fly into the tree. He would stop what he was doing to chase them off, and when all birds were gone, he would go back to work.

I think I have been keeping people out of my tree lately. Friends and family have called, and I have either not answered or have not called them back.
I have not been to psychologist in a month now, and canceled scheduled routine doctor appointments as I find them to be a waste of time and money. I continue time at dog shelter when I feel up to it.
I can't really say I am back to not wanting to be around anyone, since I never wanted to in the first place. I went on a tear reaching out to old friends, going to a "church", seeing doctors more, ms meetings, etc.. Its tiring shit, and feels like a waste of time. None of it added anything to my day or life. I truly felt no better trying to add people in my life. I did/do it because that is what I was told is "normal" and "healthy minded".

I haven't felt a desire to write anything.
This blog is my own personal record and diary, and I have nothing to add to it.
This post is mainly to plug in something for this span of time.

If I don't write, then I have nothing to update. I have auto-pilot on right now.


"What you have just heard was not fiction, although in many of desperate moment I most certainly wish it had been. It's over for now it seems, or at least until yesterday begins again tomorrow"

Monday, February 27, 2012

ughpdate

Feeling better. I had a fever over the weekend and that is what caused the body to freak the fuck out.
I did not know about the fever until my gf got home after 9pm from work. She felt my head, said I was burning up, took temperature, it was over 100F (don't recall exact number right now, 101.something).
I felt cold all day, and had full body pain, including my head, and I mean every muscle in my body.
Got out of bed twice all day, both times to deal with bowel problems. The second time to also deal with some work since I was on call and did not handle any calls, and I somehow got a post on this blog (odd that I got the post up fine, but my work emails are full of mistakes).
Tried to eat some soup but couldn't, each bite felt like it was going to trigger vomit.
Took flu medications, and a cocktail of muscle relaxers. I got no immediate relief.

Things started getting better on Sunday, fever went away, pain went away for the most part but was replaced with weakness. I can still barely walk, the legs are just weak, and not really in pain.
On Sunday afternoon, I ate something for the first time since Friday afternoon.

When the gf said I had a fever, it made sense why I was feeling the way I was. I know enough about MS to know a fever can be bad news. The body temperature rises and can cause issues with your nerves. Researching the issue, some info points to a pseudo-exacerbation, which I was told I have had before, but it was not fever/illness related.
This was the first fever that I know of since I have had MS. I will try to recognize it quicker in the future.

Part of me knows I should get more rest, but I am tired of being in bed. Spent about 36hrs in bed from Friday pm to Sunday am (not sure if my math is off but sounds right) with only leaving the bed for short periods of time. Didn't turn on tv until Sunday afternoon, didn't even feel well enough to watch it as odd as that sounds..
I slept a lot of the time in bed, but kept waking up and staying awake for a bit in the middle of the night. I can't be surprised by that though.

I have to work this week, taking time off is not an option. Hope to get some cannabis today, that should help ease some minor pains and sleeping through the night.



"What you have just heard was not fiction, although in many of desperate moment I most certainly wish it had been. It's over for now it seems, or at least until yesterday begins again tomorrow"

Saturday, February 25, 2012

ugh.

Friday I wasn't feeling well, nothing specific, but could tell something wasn't right.
Today woke up with problems walking, moving legs, moving anything.
I have an extreme amount of pain in my muscles. I am guessing its spasticity.
Zanaflex has done nothing to help.
Out of cannabis. I was supposed to pick some up today but I couldn't move.
I have to either use cane or hold onto the wall to walk.
This shit sucks. I will probably take a break from blogging until I am better. This post alone was a hassle.

"What you have just heard was not fiction, although in many of desperate moment I most certainly wish it had been. It's over for now it seems, or at least until yesterday begins again tomorrow"

Wednesday, February 22, 2012

Update 2/22

Been busy with family in town. Been a nice week of cooking out, fires, smoking, and laughs..
One family member had never seen snow, and we got some Sunday night, so that was nice.
Last night I was having a smoke before calling it a night, some deer came walking through the yard (you get used to what animal makes certain sounds here at night).
I got my dad out there and we watched (with a light) 8-10 deer (lost count) hanging out in the back yard. He was amazed. I had only seen 4 deer together at one time, and he had only seen a couple together at one time, so it was cool to see a "herd" of deer. It was an even cooler moment to spend with my dad.

I have been doing too much this week, I am slowing it down today, or at least my body is slowing me down. Everything is weak and at times not wanting to move. My foot is dragging more in the last couple weeks, and it is one thing I cannot hide.

Short post, hands are not wanting to type much...

"What you have just heard was not fiction, although in many of desperate moment I most certainly wish it had been. It's over for now it seems, or at least until yesterday begins again tomorrow"

Monday, February 13, 2012

Paresthesia Wave

Dealing with another wave of Paresthesia. I had it a lot months ago, and it seemed to slowly go away, and now its fully back. Always feeling like there are bugs on me. Makes sleeping uncomfortable. It had gotten to the point before where I had accepted it, and learned what the feeling was. At first it had me jumping out of bed thinking there was a bug(s) in it.
I have had a few jumps already, but just trying to keep the mind calm and aware. Along with the crawling skin feeling, I am also getting the pins and needles feeling, more in the legs than anywhere else. With the needle phobia I seem to now have, there is a slight uneasy feeling. While I am not seeing a needle, the feeling is there, I feel a needle being inserted in various places. This shit sucks.

I will take note if there is less paresthesia after smoking. Can't say that I have noticed or not. I know I am not high in my sleep or at this moment, two recent times since I am paying attention to the feeling.

"What you have just heard was not fiction, although in many of desperate moment I most certainly wish it had been. It's over for now it seems, or at least until yesterday begins again tomorrow"

Thursday, February 9, 2012

Update 2/9

Interesting week so far, started off pretty shitty and has been a little relentless. But it has some decent moments.
Weekend was shit. Waste of time. Worked the whole weekend. I was on call and the phone calls wouldn't stop. People in that town are getting dumber I suppose. Most of the calls are not what most people would consider an emergency.
Three days this week a different dick each day has called between 5-6am. Really, really fucking annoying.

Recently went to a MS meeting. At the meeting a top neurologist in the town was there for Q&A. I asked about how common residual effects from an exacerbation are, and if there was a resource for patients to look up possible conflicts between medications. Even though both of my doctors are updated on what I have taken in the past, they both seem to just pile on shit without using any caution.
I mentioned in the meeting that I had dropped all medications except Gilenya and cannabis when it is available.
The lady that runs the meeting said that they couldn't talk about who to get what from who, but if anyone wanted to help me they could see me after the meeting, and they did. After the meeting 4 people approached me, one simply stated that he smokes (and said he wants to catch a ball game when the season starts), three said they would either supply me or set me up with their dude. One person gave me some which was very nice of them. So I walked out of the meeting for three connections, when in the six or so meetings I have attended I have left there with zero new information and feeling worse about the MS.
I was given enough shit to last me a few days, so I am very grateful.


The Walk MS event is going to be happening in my town in the upcoming months. I had been letting family know about it. I didn't necessarily invite anyone here, but when they mentioned about potentially coming here I told them they were welcome anytime. Well it fucking blew up in my face a couple days ago. I already knew of a couple immediate family members planning on coming. Within 2 days I have been told of atleast 8 people that are planning to come. 8 fucking people is a bit much, and it was mentioned I should expect more.
Now I love my family and would do anything for them, but Sweet Baby Jesus Christ that's too many in one visit. I have a three bedroom house, one room is my office, the other a guest room. where the fuck with they all fit?
We will manage.

The one group that kind of throws off the vibe and balance of the weekend will be my grandparents. I never thought I would ever see them make a trip up here. They are up there in age and do not travel well. Most the remaining family smokes dope and while I have already told my Grandmother I smoke pot due to the MS and she is accepting of that, it is as bad as kicking a baby for the rest of them to do it. That goes for cigarette smoking as well, which most of them do. But that is one thing I have told them to suck it up and deal with it. When my Grandmother saw me smoke for the first time, she took a swing at me, and threw a fit. After that she never gave me shit, and never bitched at me again. So the family that does smoke needs to just take the swing, and get it over with.
I will promise this, I will not hide my dope smoking around her. I swear, if it is time for me to smoke and she is outside, I will march right out there with my joint or pipe and fire it up. I will then proceed to attempt the most complex, and intelligent conversation she has ever heard. I already talk over her head at times and she tries to keep up, but I will rehearse this shit. I will make sure any misconception she has, is completely blown away. Again her and I already talked about it. Last time I was down visiting them, I brought it up when she was asking about my medications. She even said if she knew where she could get it, she would right then. Little did she know I was getting ready to leave her house and pick up three ounces.

My grandfather asked my mom once last year if she "had any of those funny cigarettes", I guess he was in pain one day and was open to smoking it (again?). She said she didn't. I will ask him when we are alone if he would like a toke. I love and relish, I go so far as to say I get a rush from getting to smoke with family members that I never thought I would get to, or never thought they would ever. I have smoked with other grandparents, aunts/uncles etc... I have a cousin that I was around when she was born up till she was in early teens and she moved. One of the smartest and brightest people I have ever met. Her mom said she knows her daughter has smoked and probably would smoke when she came to visit. My mind was blown thinking about the memory of the sweetest girl in my life taking a toke of that shit. I would never pressure her, but I will offer it once since she is 18 now. I get giddy thinking about it, and I think that's where the rush is kicking in... I never would pressure anyone into it, although I did in my late teens with one of my good friends. He was drunk so I figured I could talk him into it. But he never gave in...

My life seems to be all or nothing especially when it comes to friends, family, or pot.

"What you have just heard was not fiction, although in many of desperate moment I most certainly wish it had been. It's over for now it seems, or at least until yesterday begins again tomorrow"

Saturday, February 4, 2012

Short Update 2/4

No major fighting today, some arguing but no big blow out like yesterday.
I did get on to her for dealing with the problem by drinking and she said "What problem?"..."THAT is the fucking problem"
She in denial that we have any issues, and she drinks herself shitty, just for the kicks?
I can tell that she knows the inevitable is coming. It's already in motion I think. I dunno. I will feel like such a fucking ass if months pass and I see this post and nothing has changed...


There will be a blizzard tomorrow just because I said something, but spring is upon us here. The flowers are starting to sprout with a few blooming. Bushes are starting to bud.
Yellows, blues, and reds, with more to come. Almost like seeing color for the first time.
This time last year I had double vision, and was very unhappy. I have struggled past a year, no double vision, also no happiness.
I need to change with the season.

Short post for once.

"What you have just heard was not fiction, although in many of desperate moment I most certainly wish it had been. It's over for now it seems, or at least until yesterday begins again tomorrow"

Friday, February 3, 2012

The Fight - Round 1

Ding Ding. We fucking went at it yesterday. I don't recall exactly what kicked it off, but before we knew it we were in a shouting match, both of us spewing nasty verbal regurgitated shit. "asshole jerk off piece of shit" "bitch cunt whore" around and around we went.

Very loose transcript of argument parts. I cannot remember every word said, but some points I do.
me: "I don't love you, and I barely fucking like you"
her: "Why is it so important to be in love?"
me: "Really? You don't think two people that have been together for over ten years should love each other?"
her: "No, a lot of people fall out of love"
me: "yeah, they fucking separate or get divorced"
her: nothing
me: "I gave this bullshit time, I tried to get over you being a fucking whore, but everything has been compounded this year, and your inability to be faithful, your lying, and your drinking has all been magnified"
her: "Get over it. It was just sex, and meant nothing"
me: "Yes it was just sex to you, but it is more to me. Its entire thing wrapped up together. To you it was a few blowjobs and some fucking. To me, it was lies, deceit, manipulation. You cared enough about that sex then to hide it."
her: repeats herself that I should be able to get over it
me: "You don't think its a little fucked up not kissing each other for a year?"
her: "No."
me: "You don't think its a little fucked up we have not been intimate with each other in a year? We only fuck occasionally to serve its purpose. Not to connect."
her: "That is all its ever been, just fucking. We have never had any intimate moments."
me: "Not once in ten years?"
her: "No."
me: "Sooo, you ARE basically a whore. You give up your body for sex, with no affection or intimacy, and in return you get a place to live, food to eat and shit"
her: "Whatever."
me: "Yeah, whatever, that's a really fucking deep thought. So we are really room mates then? Room mates that fuck sometimes, but don't like each other..."
her: "Pretty much"
me: "Then you are fucking evicted bitch! Get your fucking shit and leave!"
both: more back and forth name calling.

At this point my work is calling, and I am late for a scheduled appointment. I just had to go to my office.
She runs off to the store and returns with a bottle of wine. I stayed in my office busy working for the next few hours.
I come out and she is fucked up drunk (she drank the whole bottle) and I didn't even want to get into again with her. I know better than to start a fight with her drunk.
As I stood there looking at her drunk face attached to a head that couldn't stay still, trying to figure out to myself what my next step is, one of my cousins called that I am close to, but don't get to talk to often. We talked for 2 hours catching up on stuff. (she is going to come visit me for the upcoming Walk MS).
Left my office to find the bitch passed out drunk. She was mumbling some bullshit about a facebook game or something.
She went to bed before I did, and when I came to bed, she tried to put a arm around me, which I promptly moved and said "fucking drunk bitch you don't even know who your in bed with". She didn't say anything.

Today she has sent me some emails while shes working trying to act like everything is normal. Asking about super bowl and stupid shit. Trying to act like the argument never happened. It really makes me feel like a joke to her. She seems unable to take me serious.
She has no idea that I might actually grow a pair this afternoon.

"What you have just heard was not fiction, although in many of desperate moment I most certainly wish it had been. It's over for now it seems, or at least until yesterday begins again tomorrow"

Thursday, February 2, 2012

Update 2/2

Went to psychologist today yesterday, she gave me quite a bit to think about. I make a living as problem solver. I have been dealing with other peoples issues and problems for over a decade as a career. I seemingly have an answer for everything.
But for whatever reason, my doctor is able to ask questions that leave me with no answers. My brain locks up on the types of questions and scenarios she puts me through. She is good at perspectives that I miss.

Past 3am and still working. I need to learn what my limits are. I don't normally work this late but today, too many things have gone wrong that require my attention.
Didn't start off right with some asshole calling the emergency line which goes to my cell, at 6:30am this morning. Mr. Dickhead just wanted to see if he could get some assistance with something at 9am, and ask too many questions. If you can think of an insult, it was used or thought of once that call ended.

I wanted to go to the shelter today but the pain in my legs has been bad, mainly in the right leg. Since it was raining this evening I figured I could atleast stop in and give some dogs some company for a little bit, but by the time shrink visit was over I had to get home and get laid out.
I am out of cannabis so I am dealing with all of this with no medications.
Due to finances (thank you IRS), it'll be a few more weeks until I get anymore. But I have lined up some from out of state to get here at the end of the month and it will cost me a quarter of the price for the same amount.
But no hash for a few months while a fresh crop is growing. I would rather have some good hash. A little goes a long way.
Until that arrives I will just tough it out. I will not go back on the shitty medications the doctors had me on.
I am no longer going to be their guinea pig.

Tomorrow Today is going to be rough.

"What you have just heard was not fiction, although in many of desperate moment I most certainly wish it had been. It's over for now it seems, or at least until yesterday begins again tomorrow"

Tuesday, January 31, 2012

Update 1/31

It is really hard to give a shit about anything right now. I am fighting this depression with all I have, but I constantly feel like I am losing this fight.
I have ZERO happiness in my life right now. That is not a whiny, pouting statement, I have NOTHING that makes me happy right now. Nothing that even makes me crack a smile.
Even talking to family right now is bothersome because I have to turn on some bullshit persona, and its tiring.
The volunteer stuff has not filled a void in my life like I hoped. How big is this fucking void?

Legs are giving me trouble, mainly the right leg. This will only prevent me from spending more time at the shelter, and another reminder I cannot accomplish the simple and few things in life I do want to do... I never asked for or expected much out of life. Is this why it has turned out the way it has? Because I was content with a small house, regular car, a love and a dog? What more was I supposed to want? Is this life's way of telling me I wasn't living it enough, and I should have desired more?
I didn't NEED anything else though. I don't need the big house, expensive car, etc... That's all shit. Things.

I just want my old life back, and I would only ask for parts of it. I can deal with the MS. I am having the hardest time dealing with the lost of my dog and love. If I could just have my two girls back... I don't even want God back. Just the mutual love I had for the dog and the girlfriend.
Please wake up. Please wake up. I need to wake up. I hope I do. I don't care as a fetus or a man on his deathbed. Part of me refuses to accept this as my reality.

Seem to be going back to losing sleep. Taking a long time to fall asleep, waking up and staying awake.
I was up at 4:30am and eventually decided to put a post up. I am thinking some shit in my head is keeping me up, and it probably is.
I am nearly out of smoke otherwise I could smoke and get me to sleep and stay there. I have been conserving the cannabis since it will be near the end of February before I get more, this is mainly due to availability and finances. I will be out in the next day or two.

Girlfriend and I are still not talking much. It's been going on for almost a year now. Some days I feel like just telling her it's time to call it quits. I have certain dates stuck in my head of various things that happened this time last year regarding her cheating and its nearly impossible to not think about.
I keep thinking I need a completely fresh start. Get rid of her, sell nearly everything I own, and move. Maybe even a new job, which would be kind of stupid. I have a perfect job for someone with MS.
I need results now in my life. I am not going to sit here January 2013 writing the same bullshit that I am today.

Another post written in tears...

"What you have just heard was not fiction, although in many of desperate moment I most certainly wish it had been. It's over for now it seems, or at least until yesterday begins again tomorrow"

Monday, January 30, 2012

Oh Shit!

I instantly thought I was in this picture...

Oh Shit: Night Arrow! by Safwat Saleem

Saturday, January 28, 2012

Update 1/28

Woke up and felt like a champ this morning. Maybe a former champ but I felt ok. No hangover, just my normal bullshit. That will probably be the only drink I have this year. Reminded me again why I don't drink. I guess it was more the double vision than anything. I did throw up and that was a first since my late teens. But I think the combo of the big chicken dinner, too many drinks too fast, and the kicker was the dope smoking. I was good until I smoked a joint. Never once got sick smoking pot by itself.

Went to the animal shelter volunteer orientation today. That was nice. Everything is straight forward and simple. I was pleased to hear that they don't schedule you on anything. You come and go as you please, and there is no assigned tasks to any one person. You can do whatever you feel like doing that day. Be it walk dogs, play with them, clean kennels, wash dishes, etc...

I might go to that church again tomorrow and maybe stop by the shelter and walk a couple dogs on my way home. I live outside town so might as well "get two birds stoned at once".

"What you have just heard was not fiction, although in many of desperate moment I most certainly wish it had been. It's over for now it seems, or at least until yesterday begins again tomorrow"

Drunk Post

Well I am fucked up right now. I may regret even getting on here in the morning. This equals a drunk phone call to a friend late at night...
I am not a drinker, the last drink I had was on Cinco de Mayo (May 5th), and I only had one. Before that, I can honestly not remember.
My girlfriend called on her way home and asked if I needed anything and I told her a pint of whiskey. She brought that home along with some fried chicken. Haven't had fried chicken dinner in a long time.
Anyways, after dinner I slammed that pint. I mean it was gone within and hour or so, got good and fucked up.
I did it for three reasons, 1. Just like standing in the rain, I wanted to feel something different for a moment. 2. I wanted to remind myself how much I do not like drinking and to get this one out of the way. Sort of a reminder that turning to booze would never be an answer for me. 3. Taxes
I got double vision drunk, and was instantly reminded and really placed back into early 2011 when I had optic neuritis. I did not like that feeling.

I was doing fine until I smoked some pot, that will take you somewhere else. I actually think pot gets a bad rap because people smoke it after drinking, and get really fucked up and do something really fucking stupid.
You should not mix the two. Get drunk, or get stoned, not both.
Didn't take long after smoking the chicken and liquor was churning and needed to go.

I guess at the time of writing this I am still feeling right but I have since puked up most of my chicken and liquor, so I feel like I have it together. I think I am keeping up with my punctuation and grammar here. I am however smoking more. I laid in bed for about 30 minutes and decided I wanted to smoke a cigarette, and put a post up. See how I could articulate things in this state of mind.



Random thoughts:
I have been trying to set some goals lately. Plan a next step so I have some kind of direction.
I've been looking into cabins for rent in various decriminalized states. I want to downsize. I am in a three bedroom that's too big. This house got bigger when my dog died. The acreage and house feel like a waste right now. I put away a hand towel that says "a home without a dog is just a house". It was one of the last in drawer. We both avoided using it, so I just put it in her box.
I have a fantasy in mind of living in a Yurt. It would certainly be a downsize, but a way to return to the simpler person I used to be. I didn't need things. Didn't get a tv and cable until the last 7 years, and that was the girlfriend begging for it. I rarely watch tv as it is. Watch a few dark/dry humor shows and the occasional movie.
Watched Rum Diary and The Big Year. Rum Diary was not as good as I hoped but I parts of it enough to not stop.
The Big Year was a surprise. I only watched it because of Steve Martin and John Cleese (in my opinion, Jack Black, and Owen Wilson are the same character in every single one of their own movies, AND they are not the only actors like that). It opened with "This is a true story. Only the facts have been changed" It was about people who are "Birders". They seek all species of birds. Three varying characters have their adventure to have "The Big Year", meaning finding a record breaking amount of different birds. It was presented like a nature film on man and his quest for these birds. (Cleese narrates)
Birding, to each their own.

Feeling pretty good right now. Good night/day.

"What you have just heard was not fiction, although in many of desperate moment I most certainly wish it had been. It's over for now it seems, or at least until yesterday begins again tomorrow"

Friday, January 27, 2012

Trying to find my missing peace/piece.

I have had some things to say this week but I have just tried staying off the computer while I am not working and spend more time outside. It has gotten oddly warm for this time of the year. Fucking bees are out and shit in late January which is unusual for this state and time of year.

Went to my PCP this week so we could discuss my issues with medications. I stopped taking the Valium after a week. I felt no effects from it. I was taking 10mg which is the highest dose. I took two and still felt nothing. Saturday afternoon I took two Valium and two Zanaflex and did not get the least bit drowsy. No feeling up or down, just my typical "fuck this life" feeling.
The visit was basically a waste of time and money. He recommended since Benzo meds are doing nothing that I go back to SSRI's (anti-depressants). I told him I was not interested. We discussed my cannabis use.
I will be sticking to Gilenya and Cannabis as long as I can. I cannot always get pot, but when I run out this time, I will start back up on Marinol. Its been almost 3 months since I have taken it, any tolerance I developed should have passed and I may get a couple months use out of it again.

Relationship with girlfriend is at its usual standstill. We rarely talk. I have decided that if things don't change by late spring or summer, she will be asked to leave. Most people would have done it already, but we are talking about a 11 year relationship, that until last year I would have done anything for that girl. I would have killed or be killed. Its hard to throw that away, even though she turned me into the garbage.

I had a couple moments of clarity last night. It was about 60 degrees (F) outside, wind gusts were hitting in the 30's (MPH). So it was nice out, cool and windy. I stood outside with my buzz and let the wind whip around me. For moments, and I don't know how long they lasted, seconds, minutes, or what, but I had moments of no pain. Nothing concerned me. I felt peace if only for minutes while the wind wreaked havoc on the forest around me.
Later in the evening I went out again to smoke, and it was lightly raining, a little more than a misting rain, it felt nice. While my girlfriend hid in the shelter from part of the house to prevent getting wet, I stood in it looking for my peace again.
I couldn't quite find it because she was nagging me to get out of the rain. After the third or fourth time she told me to get out of the rain, I turned and snapped that "I want to feel something different than what I feel right now". She shut up and didn't say another word.

I have orientation tomorrow for the volunteering at the dog shelter. Looking forward to it. I don't look forward to much these days.

"What you have just heard was not fiction, although in many of desperate moment I most certainly wish it had been. It's over for now it seems, or at least until yesterday begins again tomorrow"

Monday, January 23, 2012

Living life in reverse

This summary is not available. Please click here to view the post.

Thursday, January 19, 2012

One step and stumble at a time...

The SOPA/PIPA blackout seems to have been a very powerful statement. Multiple supporters and co-sponsors of the bill in Washington have already dropped their support of the bill (14 as of this morning). Still has a long way before being fully dropped but its a step in the right direction...

Started Valium and it does't do shit. Doesn't make me drowsy, pick me up, center me, nothing. It's even supposed to help with spasms, and I continue to have them while on the medication. These are 10mg which I guess is the highest dose. I took two last night with no change in any feeling. Am I that dead inside I cannot feel medication trying to work? Is my brain that fucked it wont allow medications to work?

Well I have been trying my best to take steps in the right direction for myself.
In the last two days, I got in touch with some of my old friends. Friends I grew up with and were close to until my early 20's. At that time we all just kind of drifted apart. Most of it was each of us getting into serious relationships, careers, and whatever else. Really cannot pinpoint why, it just slowly happened. The times we would hang out became less and less until a couple of us simply moved out of the city/state and not saying a word to each other about it. By now all these guys have kids, some are married.

Turns out my two main friends I grew up with already knew about the MS. They found out from my sister. Not sure how I feel about her telling people, I guess it just threw me off when one of the first things they bring up after all these years is that. On one hand it was nice that they cared and brought it up because I wasn't going to, at least for a while. On the other hand, if they gave a shit, why didn't they bother trying to contact me? Again makes me evaluate what kind of friend I was. We were a close knit group growing up for years. We did everything together. I was always there for them, and helped any way I possibly could, and vice versa...
If there was a leader of our group, I would say it was me. I was the oldest (by a few months) and had my head on straight. I always knew where the line was. Just how far we could take things without going to far, or getting caught.
In our teenage years we would go drinking at a dead end in a remote location almost every weekend, but I would always make sure one person was not drinking and could drive us all home. It was a rule I put in place and we always followed it. I was a DD multiple times. If there was a potential issue with a parent, I had a solution for the issue. I could script a perfect manipulation to be used on a parent to get out of nearly all situations with even the strictest parent. None of us ever got busted for drinking, or smoking dope, or whatever shenanigans we had been up to, and we did plenty of shit that would have landed us in jail.
I wish I could step back into that time for a little while. I was healthy and care free, I could do anything.
I handled a full time job, girls, drinking/drugs, friends, all of it, and it was easy, and I wasn't even 18 yet living on my own.

Anyways, took that step to getting in touch with them, we all exchanged email/mailing addresses and phone numbers. Everyone was in agreement that too much time had passed, that we all needed to stay in touch and plan a trip for us all to get together.

I have to admit I had a flash of happiness talking with them. Actually laughed a bit going over some old shit we used to do. My girlfriend observed the same thing since she rarely even sees me crack a smile anymore.

Went to psychologist yesterday. Not much was accomplished in this visit. She was trying to get me to imagine and describe what I would be doing with my life if I did not have MS, but I was drawing a blank. As if to get me to realize I should be able to do the same things. But that is not the case. I moved to the mountains to be more of an outdoors-man, hiking and camping. I cannot physically do that shit anymore.
She tried to explore current goals, yet I have none. All I have known since I was 15 was working a full time job. By 17 I was working in my current career, owned my own home by 19, so goals were met pretty early. I really didn't have defined goals, I just needed to work, and get to the weekend. At that age, I just wanted to chase the muff around and get fucked up, responsibly.
She also went over scenarios where if I was with someone I was actually in love with and she loved me, and how I think that would affect my depression.
It was hard answering any of these questions, I don't know. I seemed to lost my ability to peel layers from a scenario or situation to view it at every angle and have an answer for everything. I feel like I can barely problem solve in my job anymore, which is my job.

Religion came up, and I revealed that I have in fact lost my faith in God. She was surprised and concerned to hear that, considering everything I have lost in the last year, to also lose that is apparently a big deal. It basically is just too much for one person. Even others that may be close to my situation with the endless flow of bullshit, still have some sort of spirituality. Something they depend on. I do not have that. I have no religion or spirituality. Other than this blog, I have nothing I lean on for any support.
There is no meaning to life. I think we are just here, and then we are not. What's left of us is what is recorded by humans in our existence.
The God I did believe in is supposed to be a loving and caring God. I don't want to worship a God that allows life to be like this. This is not my doing. Too much of this is out of my control.
I have lived my life as a good person. I have always treated people with respect, even if I don't respect them or what they do. Am I being punished for swearing? Am I being punished for sex before marriage? How about underage drinking, or taking drugs? And downloading movies or music? If any of these "sins" warrant the type of punishment that I have been given, then fuck you. I do not need you in my life then. That is not how you show your existence, show your love, or even test one's faith.
Not where I wanna go with this. Point is, as fucked as the world is, my world included, no real God would do this. It just simply wouldn't happen. I do not care what some archaic bullshit book says about it.

So it breaks down to this, in one year I have lost:
Health (MS)
Love (girlfriend)
Dog (cancer)
God

What do I have to wake up for? Work a job? Stay alive for family that is no where near me? Bitch and moan on a meaningless blog?
There's nothing. Its all shit, and it will only continue to decompose.

I started slowly dying since the day I was born. Come on with it already.

Wednesday, January 18, 2012

SOPA/PIPA Blackout

Blogger has too many restrictions in place where I couldn't achieve a full black out. If there is a way with blogger, than I am not aware of it.

Anyways, enjoy the crippled internet for a day.

Tuesday, January 17, 2012

Blackout Reminder and Update

A reminder that this blog will go dark in protest of SOPA/PIPA tomorrow.
I am going for a full blackout, but if Blogger will not allow it, I have some alternatives.

I will be picking up my Valium in the next few hours. Might wait until I am done with work to take it for the first time. I have never taken Valium before so I am not sure what to expect. I know it is popular on the street and has street value to it. We will see.

Monday, January 16, 2012

Trying to avoid "F--- It Mode"

This blog has to be really fucking annoying to read right now. I read my last couple posts and I am annoyed with what I read. Just some prick bitching and moaning. Fucking get over it and get your shit together right?

I am trying really hard to avoid going into Fuck It Mode... I have already dropped three medications without consulting with a doctor yet. I am just tired of taking so many medications and not feeling any better. I could justify any one of the medications if they actually helped with anything.

Regardless of how hard I try to keep my mind straight and be more patient, I am still finding myself in states of self destruct. I am putting myself in situations where I know I am pushing myself and I don't care.
In the last week I have physically pushed myself to the point of not being able to move either my legs, arms, or both. I have stood in the shower with water as hot as I can bear until I can barely stand up and I am left with numbness and tingling as a result. I am not eating or drinking properly. Last few meals have been plain chicken meat on bread with nothing else, and I am not drinking 6+ glasses of water like I normally do. I am down to less than one glass to take Gilenya. I know I am dehydrating myself. I just don't give a fuck right now.
These are just a few examples to go along with dropping medication without consulting first.

I just simply do not feel like taking care of myself right now. I have to force myself out of bed to get to work by telling myself "You have to get up and work you fucking piece of shit. GET THE FUCK UP!!!"

Again, I am writing senseless bullshit. I know better than to carry myself this way but I do it anyways.
If it weren't for this blog I would keep all of this to myself and give you a bullshit smile and say it's a great day.
The last bit of sense I do have tells me to write this shit down. To document how I currently feel and what I am doing to myself. I cannot be the only one.

PCP's nurse called today, they are going to put me on Valium. I will update my medications list today or tomorrow to remove the old bullshit and put new bullshit up.

Update 1/16

First I want to note, this blog will be "blacked out" on Wednesday 1/16 in protest of the SOPA bill. 
I have a couple ways it will be blacked out which I will test before Wednesday. I am planning on a complete outage, but if Blogger won't allow, then I will simply remove public access to the site.

Filled out a volunteer application at a local no-kill shelter. It had a long check list on various things they need help with, but I only opted for dog walking/exercise. I will start with that and go from there. Orientation is the weekend after next.

Finally had a bowel movement, the first in about four days. I already feel like shit, not being able to shit doesn't help.
Luckily no blood in the shit. Maybe the internal hemorrhoids have healed. Won't know until they bleed again.

Either MS has fucked with my body so much it can barely take a shit on it's own, or all the stupid fucking medications I am being given are causing constipation. I have had meds in the past cause constipation within a day or two of starting it, and I have had constipation during and after exacerbations, so it is hard to say what is fucking me up right now. I can say MS is the root. Without it I wouldn't be taking any medications in the first place. (prior to MS, I wouldn't even take an aspirin for a headache)

I stopped taking Mobic, Ativan and Cymbalta yesterday. Mobic is a anti-inflammatory that I started taking during last exacerbation. Don't think it was doing anything.
Ativan does nothing. Its supposed to have immediate results and does't do shit. Called my PCP on Friday to let him know and see what he wanted to do. Did not hear back from him.
Cymbalta is an anti-depressant, and regardless of needing one, the withdrawal symptoms are really bad and I wanna just get off it now so I don't have to deal with them later. I am not suicidal so any feeling of being down and out is the norm anyways...

I made these changes without consulting with my doctor(s) first. Obviously this is not recommended. Fuck it.
I will update my current medications list in the next few days if nothing comes up. I will be down to Gilenya, Zanaflex (as needed) and Cannabis (as needed).

Friday, January 13, 2012

Update 1/13

I had my appointment with psychologist yesterday. We went over and addressed some of the issues and thoughts I have had for a while.
I want to note that her husband did pass from cancer in the last two weeks. So I kept my thoughts on cancer to myself. But I did explain how I feel about my lack of desire to live out this life and how out-living my parents appear to be my only goal right now.
She echoed the same thing I have thought and others have told me, that I need to get a hobby, and I need to get out and socialize more. She feels that I am creating a great distance from other people and society in general when I don't leave my house for 2 weeks at a time like I have been lately.
I mentioned to her, which I haven't here, but I shaved for the first time yesterday in over a month. I was bearded and carrying the typical depressed look. I do want to say, even though I was not shaving, I have always kept up on my hygiene, meaning I shower daily, I don't wear dirty clothes etc... Growing a full beard was out of character for me though, I usually stay close to clean shaved or just a little scruff.

She mentioned that while we were talking the only time I have smiled the last few visits is when we talk about dogs, or when her dog comes and loves on me. She reinforced the fact that I need to get a dog or get involved with them somehow. Her saying that had me tearing up for the first time in her office. Not sure what it was, don't know if it was me thinking about my dog, or the thought of getting another, or even the confirmation from someone that knows me well, that I do in fact need that companionship.
I looked up a few of the shelters in my area and tomorrow I will visit at least one of them to see about volunteering. I really would like to only get involved in walking them and playing with them if that's possible. I am sure they will take what they can get.
I figured it would be good for me and the dogs for us to walk each other. So we will see.

Apparently my girlfriend had a break down yesterday after I left for 2 hours of doctor visits. She got to thinking about our dog that passed recently. Her crying started up again when I discussed my doctor's recommendation to get a dog. We are both in agreement that we are not ready for a new dog, but she thought the volunteering was a good idea.

I called my PCP today and left a message. I wanted him to know the Ativan does nothing for me and see what he would like to do. I will also mention the hemorrhoids if he calls me back personally. I told the person that took the message that I had something personal to discuss if he had the time to call me back.

I have been seeing my psychologist once every three weeks because I felt that was enough (except with her husband in hospice we didn't meet for over a month), but she asked to see me again next week, and possible once a week for the next few weeks.