Wednesday, October 9, 2013

Updates and Additions

I have been very busy, but not too busy to write. Just a lack of desire to actually type and rehash bullshit.
Decided to get this shit down to keep things somewhat up to date. Memory requires jogging and the blog reminds me of the good and bad of past.

Starting with a couple goods... I eventually got signed up on a financial assistance plan with Biogen. I had to get another starter of Tecfidera that holds my doctor's titration schedule of 120mg once a day for two weeks, then 120mg twice a day two weeks. If we wanted the normal dose, my doctor would have to redo paperwork. 
Completed a second starter dose, two months in a row. When I was getting low, I called Biogen to get second shipment sent and of course they couldn't find the order or my enrollment in program. 
After nearly an hour on the phone, and expressing my displeasure of having to taking the starter for a third month in a row, they got things pushed through. Told me I would expect a call in a few days.. did not receive that call, I called almost a week later as I was two days left of medication, they jumped on it and overnighted the medication. Shouldn't have been this much trouble. 

While I can tell definite GI issues if I don't eat when taking the medication, I cannot find a rhythm to the flushing. Some days its not so bad and others, I want to take my skin off with a razor.
A couple nights ago, flushing hit and I was on fire. I sat up in bed trying to put my mind elsewhere but I couldn't. I got so frustrated I ripped my shirt off like a fucking baby. Pissed me off that I ruined a perfectly good shirt. 
The flushing makes my skin dark red, and it feels hot. Feels like needles from head to toe... When it hits hard, I tell myself I am going to quit but I keep taking it. Its supposed to ease up over time. Well hurry the fuck up. I have been trying to remember not to take it too late. Flushing seems magnified when I am trying to sleep.

Another good thing is we got a pet. Its a cat, and shes been with us for almost two months.
While visiting the girlfriend's parents there was some kids walking around holding a kitten by it's neck.
I yelled at these kids a couple times when I would see them carrying it like that, telling them how to hold her.
Anytime the kitten got loose, she would run across the street to us and was very loving. Poor thing was malnourished and covered in fleas.
We decided we would rescue this cat, but by the time we decided on that, one of the kids had rounded her back up and locked her in their house. We did not see her for the last two days of the trip there.
Two weeks later, gf's mom called, said the kitten was loose and came to her. It was still in bad shape and covered in fleas. We said we will take her, and she was taken inside and cared for.
A couple days later my gf traveled a few hundred miles and got her. They took her to vet to get checked and shots before bringing her home..
She has since regrown hair in places it was missing and is steadily putting on weight. She has been to vet here and up to date on shots. She is underweight still and has to put on more before getting fixed but is getting there.

I am not a cat person, but this cat is very sweet. She sleeps through the night and does not bother us. She loves to sleep on or by me while I work. Girlfriend is slightly jealous of the relationship which was inevitable since I work from home. She is an indoor/outdoor cat. She likes to go outside with us and come back in with us. She was litter box trained before she got here and she doesn't like wet food.. odd. She loves the sound of dripping water, its mesmerizing to her, but cannot stand to get wet.

Alright, now some bullshit. I requested a recommendation for an eye doctor from my neurologist since the ON has lasted 8 months now and needs to be documented. I went to a neuro-ophthalmologist that was recommended.
Ran through several tests, and completed a field test. He was able to confirm the ON in the right eye, but said the ON had actually affected both eyes. The retina in left eye is pale and field tests show its deficiencies. I suspected issues with the left eye but ignored them concentrating on the obvious issues with right...
He confirmed that there is nothing that can be done and expected that I may have issues with this forever since the inflammation has lasted this long....great.

I am still unable to find someone in my area where I can get my shit. My only consistent and reliable dude is in another state and requires a couple hour drive each way.. I am having trouble socializing with these people here. I have little to nothing in common with them. The couple people my age with MS I have met here don't and have never smoked. Both are very religious.. 
I have had my eye on some groups that meet up here but always miss them for one reason or another.
I was going to try my luck with a meditation group, an atheist group, and an IT/Sysadmin group. 
Don't care to socialize with these people but I am on a mission. 

My lease is up in a couple months.. trying to decide on moving to another part of this area or go ahead and just fucking leave. Hate this area, the people, the way of life, every single fucking thing about it. Can I find happiness somewhere? Can I shut the fuck up, suck it up and deal with it? I am seeking the unattainable. 

I have been prepping paperwork and information to apply for disability. I was going to make an appointment with local SS field office but dipshits in DC are fucking me on that.. 
Hopefully they get their shit together before long so I can get the ball rolling.
I have managed to work through all the troubles so far but this bout of ON is really making work difficult.  
Seems like everything now is just a waiting game.. 

I know I am forgetting something. Oh well, till next time.

Friday, August 9, 2013

Update 8/9

Thanks to Sherri writing about her recent enrollment in a new patience assistance from Biogen, I was able to call them, and after 30+mins they located the program and found that I qualified. I will get to bypass my insurance and receive Tecfidera for free.

Made another run to old town for cannabis.
(which is already getting way too fucking old...I shouldn't have to spend four fucking hours in the car in one fucking day for some fucking pot...fucking ridiculous.. I can only find shit here.)
I called my old Psychologist a few days before the trip and made an appointment with her.
She was pleasantly surprised to see or hear from me. Last time I saw her, she asked me not to disappear on her, and I said I wouldn't.. well I did just that. I didn't see her before a I moved. Been over a year or more since she had heard from me.

We updated records and some of the significant bullshit. It was a good visit. Didn't make any sort of impact. She pushed multiple times that I need a dog. I know this. There are things that have to be worked out. I live on a mountain with little to no room for a dog to do their business. I expect to be moved soon and a proper yard will be priority.
She has two dogs that are trained service dogs and they were both all over me. It was nice to get that attention and unconditional affection. They were getting on the couch with me, each trying to fight for attention.
For a service dog, they were apparently misbehaving this way which led to another verbal push for a dog.

This..... this was upsetting on multiple fronts. It was upsetting to see someone suffering like that. It was upsetting to see someone with MS suffering like that. It was upsetting that she has no decision in her fate.
She wants assisted suicide so they can harvest her organs. How can an animal get put down because its too ill and healing is 'not cost effective' or there is not enough room in a shelter? We can kill a living animal without a second thought. But a human... well, make that thing live regardless if it wants to or not.
I will not live like that for a moment... I will drown, cut, electrocute before I ever live die in that situation.
I simply will not require assistance. I want to write my own ending.

Humans are profitable. Doesn't matter in what shape. Healthy and sick humans are consumers either way. You must be alive to buy new gadgets, entertainment, medications, real estate etc..
Every one of us have some function in keeping the wheels greased for them.

Tuesday, July 16, 2013

Update 7/16

About three weeks ago I took a ride with the girlfriend to our old town to catch up with a friend and pick up some cannabis.
It's supposed to only be a 2 hour ride but an accident on the highway had us stopped at one point for 3 hours. People were out of their vehicles walking around and having conversations. Took five hours total just to make it there. Only took the normal two hours back...
I was on-call that weekend and it started in the evening so I had little time to visit.
Going back in a couple weeks, hopefully with no bullshit.

Not sure if it was the heat or the stress, but the ordeal put me in a pseudo-exacerbation. Left leg has gone from spotty numbness to being completely numb and back is hit with spasticity locking it up.
I am also having pains in my right leg now that I can only describe as neuropathic pain. It hits around the shin and knee, spreading out from there.
My ability to walk has gotten even worse. I can only walk a little bit at a time before legs are too tired to continue. Getting a walker this week... wheelchair seems inevitable since I can barely stand with assistance. I am just too stubborn.

Last week my neurologist spoke at a MS dinner and I got to see him afterwards. He thinks it could be a full blown exacerbation. He was due in his office a couple days later. I spoke with his nurse about it the next day. Have not receive a follow up call yet.

When I called the specialty pharmacy to get my second month of Tecfidera shipped, they informed me that insurance had denied the full prescription.
My insurance wants to me to have tried Avonex, Capaxone, and Rebif first. I have already been on Rebif and I wont go on injectables again. We started the appeals process. My doctor was going to send a letter of medical necessity stating that I have the needle phobia and require oral medication.

I was told on Friday that my last great-grandmother who lives a few states away was going to be in a state near by for a week. She was diagnosed with cancer and was given a couple months to live. She is 96 years old.
I was on call over the weekend but on Sunday I woke at 5am and my eyes wouldn't close. I got up, took a shower and hit the road. I was not able to travel there any other time in the upcoming week.
Drove for four hours, got to visit for four hours and back on the road again another four hours back home just before sundown (blurriness in eye makes it harder to drive at night).
My left leg had gotten so numb that I kept double checking its position to make sure foot wouldn't get in the way.
I couldn't get home soon enough.... but I am glad I made the trip. Got to see a newborn cousin while I was there.
Saw the oldest and the newest members of the family... no doubt in my mind that I have taken family for granted. I felt like I had missed a lot while visiting.

Sunday, June 16, 2013

So it is...

Each exacerbation takes a piece of me away that I never get back. A body that was once unstoppable, unshaken and ready for the world is ravaged by this disease and left deteriorating without grace.

It's difficult for me to argue that I have not given up since I really don't feel as that I have. But in the eyes of a normal, healthy person I cannot do enough. They make it sound so easy. Just do this and just do that.
They don't understand that walks across the house are marathons anymore. How working makes me feel mentally incompetent any more. Heat outdoors keeps me imprisoned. Spasticity and the related pain refuse to allow a decent rest.
When I am alone, some meals are skipped because of the effort and appetite involved, for I have trouble with both.

Sometimes I wonder if I am being punished for not following my heart as a teenager. Before my Dad had a stroke (leading to me dropping out of school to help the family), I had dreams of seeing this world. I wanted to live a free nomadic life, flowing and changing course with the wind. Chase the seasons and get chased by them. To hitch hike, train jump, bum my way to and from. To meet people and make an adventure of life.
But I fucked up. I got on the fucking wheel. I got on the fucking wheel like a fucking rat and never got off.
I could have jumped earlier but I felt like I would be abandoning my family.
I was watching the ground building the courage to jump, and then...
I jumped, and missed my mark. I waited too fucking long and it found me.....
MS kicked the door down and fucked me. This sorry piece of shit has not left since. It lurks around, randomly pulling me down and fucking me. It'll fuck me anytime it wants it. Anytime it feels like I may be getting my hopes up for a change, it fucks and it fucks. It's fucking relentless..

Its making me a little jealous and bitter. Somewhere, someone is living my life. They have the wind in their face with fresh air in their lungs. Wonders in their dreams and life in their eyes. An uncontrollable smile and laughter that can be heard a mile away.

I find myself in a similar conundrum. At a crossroads, I don't want to abandon my family but I am tempted to follow my own lead and not miss this time.
The suffering has turned me into an old man only waiting for the fucking to be over.

Monday, June 3, 2013

Update 6/3

Dropped Zoloft after two weeks. Caused bowel, bladder and sexual dysfunction.
Already elaborated on the issues. Took a few days after stopping for things to return to 'normal'.
I will refuse any antidepressants from here on since they all carry some fucked up side effect. Every one of them have caused one issue or another. My body/mind do not interact well with those types of drugs.

I have just over a full week on Ticfidera/BG-12. So far so good. Only slight flushing and stomach issues.
My doctor started me on his own titration schedule. Two weeks 120mg once a day. Two weeks 120mg twice a day. Then the normal 240mg twice a day. The official schedule is 120mg twice a day for seven days then bumped to 240mg twice a day.
Time will tell if this can stop the progression.

Two weeks now after Acthar and no improvement in my blurry eye.
Reported it to my doctor and that was the last thing we could try. We simply have to wait this one out and hope the inflammation goes away sooner than later. My first bout with Optic-neuritis lasted over 5 months and eventually cleared up on its own.

Still very depressed. Hating life, work, ms, etc...Wasting away, really need a change.
I think a dog is due. The timing has never seemed right and bullshit continues to happen that eats away extra funds, but that's the way its always been and I always sustain.
Its been about 18 months since she died, I miss her.

Saturday, May 18, 2013

Update 5/18

Visited neurologist. He wants to be more aggressive in treating me. He is concerned about the rate of progression. Eye is not any better and walking is the same.

Neurologist prescribed five days of Acthar. Today is the fourth day of injections. 
I feel very nauseous about 10 mins after injecting every time and it seems to last for several hours.
While its not a steroid, it produces them and no typical steroid like side effects for me. Doesn't keep me up at night, although I have been a little sweaty in morning, and no empty stomach feeling.
Starting Tecfidera about a week after Acthar. 

Doc also put me on Zoloft. I fucking hate to take that kind of bullshit. 
Takes a month or more to fully take affect.  Time will tell.
My moods are not swinging, just a steady low and quiet demeanor. I don't feel like talking to anyone. 

My dick is broke. Cannot get off to save my life. Don't know if its because of the Zoloft, Acthar, or what. 
Its a listed side effect of Zoloft.. That is counterproductive.. it's bullshit. I feel more depressed now than I did before because I can't enjoy a fuck. She keeps trying and I appreciate that but I simply cannot finish...

Thursday, April 18, 2013

"Head full of MS"

Completed my first MRI in two years a couple weeks ago. Results came back last week and I have a "head full of MS" with new and active lesions both in brain and spine.
Can't say I am surprised. The progression so far translates to the images..

I signed paperwork to start Tecfidera/BG-12. I am running out of options and not much to lose.
Biogen offers a $10 copay so drug cost is not an issue at the moment. I hate the idea of taking something that was just FDA approved even though the active ingredient has been around a long time. I also hate knowing it was used to prevent mold.

Working as much as possible. Trying to keep up with the wave of bills from MRI, steroids and doctor visits.
Really burnt out on the monotonous loop I am in. Work, hurt, repeat. Its difficult to change this up much.

Right eye is still blurry and legs do not work very well.
Drove myself to the store today for the first time in over a month. Light spreads in the eye getting really bright. Do not feel comfortable driving while the sun is out, needs to be cloudy. I wont try at night since its hard to see as a passenger.
When eyes are closed, I occasionally see a flash in right eye, looks like white nerves.

I will be moving again around spring/summer next year if this as good as it gets. Moved here to see a specialist and update my shit. Since I wont be taking Tysabri, I have no need to a big city. I will only be seeing a Neurologist a couple times a year. I have a medical history where I can probably request any drug that comes out from a neurologist and likely get it.

The will to get up daily and get it done always seemed involuntary. Its just what had to be done and I did it.. Seems less involuntary as time passes. The struggle to continue has been the worst 'symptom' yet.
The idea/fantasy that it might get better has faded. I doubt there will ever be a cure in my lifetime, much less something that reverses the damage. Just another lab rat...

Wednesday, March 27, 2013

Update 3/27

Tested positive for JCV. I do not plan on taking my chances with PML and go on Tysabri anyways.
Considered canceling MRI this week because it feels like I will be in another stand-still for a while until new wave of drugs come out. I will be going anyways because this is why I moved here. Do it right and get it over with. Document the decline.

I had lost all vision in the right eye. The blurriness was very dark and distance made no difference. Could not see the largest letter put up to the eye. Also had increased mobility issues.
Doctor put me on three days of Solu-Medrol. Located an infusion center in-network and started the steroids.
I couldn't have asked for a nicer staff at the infusion center. I did one day in the clinic and the following were intended to be done at home but there was an issue with a home care nurse in-network, so I went to the clinic without issue.

Solu-Medrol tastes like shit. More like rusty metal than shit but its shitty.
I don't know if it caused a body temperature change but my body was in pain. Legs more than the rest.
Hard to say if the steroids kept me up at night or the leg pain, but very little sleep.

After three days the vision in my right eye has gotten better. The dark contrast is gone, and replaced with a bright contrast that grabs the light and spreads it, almost a milky haze. Still blurry but I will take that over darkness.
I am extremely tired. Slept through most of the weekend and nearly any hour I wasn't working this week so far. I read that it is not uncommon for someone coming off the steroids to feel this tired. Hope it passes soon, work needs to be done.

Monday, March 18, 2013

Update 3/18

I am unable to enjoy the good without an equal share or more of the bad.
I will start with the bad since its a shorter explanation... Last Tuesday my right eye started to bother me. Within a couple days it was clear that my vision was starting to go in my right eye. It started it the top half of my eye. It seemed like a blurry shade was being slowly dropped. Since Tuesday, each day the defined line of where the blurriness started was becoming more apparent and was enveloping my eyesight... By now I have lost nearly all sight in that eye, the blurriness has taken over all but maybe 10% of the lower part of my eye. I expect the rest to be gone in the next couple days.

On top of the blurriness the eye is killing me anytime I look to the left or the right. It is very difficult to move the head left or right, or even walk without the eyes wanting to naturally scan the field of vision.
The pain is in the back of the eyeball and eventually leads to day long headaches starting in the morning.
Last time I dealt with Optic Neuritis, it was the main presenting symptom that lead to MS diagnosis, and was in the form of double vision. I have not determined what was worst yet, first ON was just scary and didn't know what was causing it and this time I knew what was happening, but I am leaning to this time due to the pain.

I got another eye patch yesterday and was not happy about it. It was impossible to not remember how things were last time I had to wear the patch. I was still reeling from the MS diagnosis and diagnosis of a cheating girlfriend. It brought a lot of shitty memories and emotions back.

Ok, so the good.
On Tuesday (same day eye discomfort showed up) I got a call out of no where that evening from my Neurology Clinic's automated services that I had an appointment with my new doctor coming up on Friday.
I called the next day to confirm and it was true. The girl who handles scheduling was excited with me since she knew who I was and had dealt with me multiple times on the phone during the whole mess with getting A appointment, then everything getting switched due to emergency visit and trying to get back with original scheduled doctor/visit...

I just happen to have my MS dinner that Thursday with my new doctor speaking, so I got to meet him on Thursday before my Friday appointment.
I love the guy. He is a very knowledgeable, open-minded, and funny doctor. He had a open ended dinner, no presentation slides, he took our questions for two hours.
He brought up cannabis himself and made a point to mention that he believes in it as a symptom management for spasticity. He mentioned Marinol but he didn't think it's efficacy was as good as the real thing, since I was sitting right next to him I said it wasn't. He smiled and said he wouldn't ask how I knew that...

Got to see him again the next day at our appointment. We went over everything with my history and current issues. He actually listened and asked questions!
We ran through multiple tests and discussed options. Looks like Tysabri will likely be next but he wanted to get blood work completed before making a recommendation.
He prescribed me Zanaflex which worked ok in the past but I would grow a tolerance over a couple weeks time. He also prescribed 50,000 IU of Vitamin D, which is taken once a week. He said while there is no definitive evidence showing Vitamin D benefit, he said there is a undeniable link in the numbers and it wouldn't hurt. At the time my right eye blurriness was there and was defined as almost half the eye gone. The doctor thought that was odd since it is usually from left/right/side-to-side. I will call him today or maybe wait a day or two until blood work returns to report complete loss.

Next I went to get my blood work done again. The last attempt couldn't be completed due to being dehydrated they said. That last attempt left a huge nasty bruise a few inches long and wide on my arm that was still there by this time. I drank a shit ton of water the day before and the day of. I was slamming it.
They still couldn't get fucking blood out. After multiple sticks in both arms they finally hit crimson gold but it flowed very slowly. Eventually got enough for a couple tests including JCV (required for Tysabri).

Doctor suggested I take the LDN since I am sitting on it. He agreed that since it gave me trouble taking it at night with sleeping, to take it in the morning.
I started taking it on Saturday, no changes. It makes me drowsy for most of the day. I feel no pick up 4-5 hours after taking it when it would normally wake me/everyone up.
He started at the meeting and the appointment that he only views it as something that makes people feel good and can lead to increased mobility. He made sure to point out that it is not a cure and not even close to one.

That's where I am now. Half blind but with a doctor.

Saturday, March 9, 2013

Update 3/9

Completed Prednisone tapper last week.
Regained some feeling in my left leg, numbness is spotty, numbness around knee adds to the walking and standing difficulty since the knee will give out on its own. I can now move toes on my left foot.

I picked a day of the week to get my blood work done and decided that was going to be the day regardless of how my body reacted.
Sat down to get blood drawn, I was feeling the anxiety and clammy shit coming on. I toughed it out, though I admit I kept my head turned and conversation moving. I could feel the needle go in a few times with her saying "hmmm" each time. What the fuck. She says I am dehydrated and my veins are 'puffing up'.
I drink several cups of water and update my records with a PA. Tried again and could not draw any fucking blood. I was told to return another day and drink lots of fluids the night before and day of. I was really hoping to get my 'Man Card' back...

Went to another pharma sponsored dinner. This one was at a church, and I already had my reservations about going, went anyways. The reality was as depressing as the idea. Again I was the youngest by 15-20 years. Most were using a wheelchair/walking aid, and everyone was looking rough. I stuck out like a sore thumb because I was new, and young.
When I requested a couple months back to be added on a mailing list for meetings, I was asked my age at that time. At the dinner I had multiple people approaching me saying "You must be x", so it may have been announced someone my age was joining the group, its not like I am a teenager but I might as well be with this group. I was asked the usual, how long ago I was diagnosed, what drugs I take, and if I would be interested in meeting their granddaughters. Also asked what church I attend and that I should visit theirs.

I didn't find anyone in the group that I felt comfortable with or gave me the right vibe where I can ask if they use cannabis. I am not open enough to ask a group or even an individual stranger if they use.
I have two additional dinners coming up (my future dr will be speaking at one).
I hope to run into someone who is younger and doesn't walk on water. To most here I might as well be sucking the devil's dick.
I would really like to find someone soon. Its been a long time now. There is a difference in how I feel with and without.

Cognitive function has been a major issue the past two weeks. At times I sit my desk and I am out of it. Feel like I have lost direction. Multiple days have been wasted in the last couple weeks where I am not getting work done. Sitting in my office staring outside. A few days were worse than others. No work, no pay.
Lately I find myself mentally somewhere else, don't know where.
It creates a constant doubt since I feel like I am precise in my thoughts/actions and now I am convinced I am always forgetting something or about to lose my keys.
If it was depression I imagine I would have seen this before.

Monday, February 11, 2013

Update 2/11

The on call neurologist at the practice where my specialist is, fit me into an appointment late in the week.
This piece of shit was something else. We started out by going over drug history. Went into detail of my issues/experience with Rebif and discussed Gilenya.

He kept leaving the room for 10-15 minutes at a time. I could hear him coming in and out of rooms down the hallway.
He proceeded to lecture me on how bad marijuana is and that I have to be on a DMD.
He followed up with informing me what my fucking options were... he started telling me about a fucking drug called Rebif!!! and then talked to me about Gilenya as an alternative to injections (!!!!). I could have hit him.. wasting my fucking time, he didn't listen to a fucking word I said. There were a couple more issues that I don't feel like going into the mundane details. It was a shit visit with shit doctor.

He said that I should be on steroids asap but before he could prescribe IV/oral I would have to do the blood work..
Since I am a mental case pussy piece of shit, I almost passed out and had to pull the fucking plug. The needle phobia is still very much there.
I fucking hate myself.

Without the blood work he wouldn't start me on any steroids. On top of that they canceled my April appointment to see the specialist stating that I could not see more than one doctor there. Well no shit, I only saw this prick in the emergency. The two doctors have to sign off on a patient transfer. Have not heard back yet about getting rescheduled with the MS Specialist.

I walked out of that place at my lowest.
I called my old neurologist and notified them of the situation and to see if I could get an oral steroid script.
The office called back the next day after 6pm, I was forgotten, but a PA remembered me on the ride home.
Got my script called in and started yet another round of Prednisone.

Each round/tapper on Prednisone has been different . The first couple times it seemed to really help, last few, not so much.
This time it's making me a bit drowsy. Makes my stomach upset for a few hours and leaves me feeling hungry (taken with food as directed).

Two days into Prednisone and I can now move a few toes on my left foot where I couldn't before. I hope that is a sign of being on the upswing. Time will tell...

I had not informed my family about recent exacerbation but I told them this week. I got shit for that.
I confided in my sister more than I ever had about this shit..I created an updated timeline for the doctors and she asked for a copy which I provided (
She was upset that she didn't know about most of the issues because I had kept to myself but says she understands. She knows who I am and how I have always been. Lack of transparency is not a surprise.

I have to figure out this blood work bullshit. I have to get it done. Man up you dumb fuck.
I have been drinking this week. Bouncing between whiskey and rum. I am in so much pain, and I just want to take it down a notch. I have no drugs for pain and no pot to smoke. No relief and the liquor is the best I can do.
Drinking here and there but only a couple consecutive nights. I dislike it enough to know this will not be an issue.


Friday, February 1, 2013


While I was driving to the MS dinner, there was a very loud pop sound, quickly looked around... my back window shattered... what in the fuck...
I thought 'Fuck it! I gotta go to his dinner', less than a minute later, I hit a bump and a quarter of it fell...massive rain storm outside so I have to return home... I commenced to cussing and turning the car around, less than a minute after that, another bump and the rest falls...

I really needed that dinner. I needed to meet my future neurologist and discuss my situation. I needed to ask a few fellow MS'ers about cannabis. I needed to be around my fucking counterparts for a couple fucking hours... I needed to be there...

Since I didn't make the meeting, I called my old neurologist to see what they could do. Other than asking for a doctor referral, I have tried to not involve them. He called me back, we discussed issues, and he wants me on 5 day taper of Solu-Medrol immediately. Because no one in the history of this country has ever traveled or gotten sick while traveling, my doctor is not authorized to order the steroids in another state... My future neurologist here is off today. Old doctor spoke with the on-call doctor here and he would not sign off on it until they saw me. He will however try to get me a sooner appointment, don't know yet how sooner. Could be days/weeks or that fuckface only shaves off two days... don't know. They said ER is my only immediate option. (even with insurance that started today, I cannot afford ER)

The gf is talking about leaving now. I think shit just got too real for her.
I wonder if she found this blog. She said things recently I know I have said about her only here. It could just be that she views the relationship exactly as I do, and as described here.

Tell me it could be worse. Tell me its going to be better. I want someone to look me in the fucking eyes and say that shit to my face.

Monday, January 28, 2013

It begins...

Over time, some symptoms come and go. Untold numbers have not been mentioned here. Something may be here for a one or five days and I never find it significant enough to document here.

Five days ago the dickhead of symptoms is here and hitting me good. Mid-day-mid-week I started having further issues walking. By the next day I have lost nearly all leg function.
My legs are locked up with spasms/spasticity, I can feel the muscles are tight, but the legs are mostly numb (if that adds up). Concrete shoes... Stairs/steps are almost impossible..
Basically existing issues are magnified.
I can only stand on them with aid and I walk by shuffling my feet. I REFUSE to get in that fucking wheelchair...
Being the hard headed prick that I am, has left me determined to not use the chair.
I bought one over a year ago ($5 at Goodwill if I remember right) after I somewhat recovered from an exacerbation and the thought of dragging myself from the bathroom to bedroom again terrified me.

I am shuffling around peg legged leaning on a cane/walking stick with every single step. It is exhausting to get anywhere or do anything.
Getting to the bathroom due to this and urinary incontinence has been an issue. I have nearly pissed myself and had it dribbling down my fucking leg in moments before (additional bummer is not currently having a washing machine and having to wash those piss pants by hand right away)..
My incontinence recently led to an embarrassing argument with the gf where I did not know I missed the toilet in a rage of ripping off pants and trying to aim... I unknowingly missed some and she found it while cleaning.
That is fucking embarrassing, no matter how old you get, what the reason is, or who fucking knows, its fucking embarrassing...

I find myself stationary quite a bit now. Last week I skipped lunch every work day staying in my office and only taking breaks at my desk when I normally take regular stretching breaks and walk around the house/outside.
Everything outside is covered in ice/snow and that makes mobility even harder.

I have another pharma sponsored dinner this week. I will make it to that dinner regardless. I want to meet my new neurologist and hopefully find someone with some cannabis.
I am just about out and really could use some. I will hold back no reservations at this dinner and will ask every person there when the opportunity presents itself. There are over a million motherfuckers in this city.. There are a few colleges here..'Survey says' 14 million Americans use it on a regular basis.. Someone is holding.

I will not live out my life in a wheelchair.
No offense to those in wheelchairs, but I don't wanna be you, I won't be you. You might find some solace in your life, I cant find any on two legs..
I don't have a love in my life or things that I live for. I don't share the same passion for life that you do.
My first thought every morning when the light hits my eyes is not about family or the things I have to be grateful for, its about this fucking disease and doing a self-check to see what could have possibly gone wrong with my shitty fucking body over night... followed by the daily thought... "what's the fucking point?"

Oh yeah, and to everyone who told me since the diagnosis that "it could be worse, you could be in a wheelchair" Fuck you. Fuck everything about you. Fuck.You.


"They even had a priest come and talk to me. He said God is listening and if I found Jesus, I'd get to walk beside him in the kingdom of Heaven. Did you hear what I said?! WALK beside him in the kingdom of Heaven! Well kiss my crippled ass. God is listening? What a crock of shit."

Monday, January 21, 2013


She got back this week after being gone almost a month waiting for my car to get fixed. 
She had a rough time up there. Between dealing with her own family to getting the flu and then scratching her cornea as she's getting close to returning, she was defiantly home sick. 
Right after she returned a massive snow storm hit our region knocking out power for just shy of 48 hours.
Got snowed in for a couple days and luckily we had food from shopping earlier in the week and had plenty of firewood. 

The firewood was a triumph for me on a couple levels.
The area where the firewood is stored had once held an above ground pool. The pool is gone but left was layers of some nasty shit. A waterlogged moldy carpet foam/insulation shit was the first layer. Became an ice rink when it froze.
Took three days to remove the shit and expose the nice rock underneath. It beat me up and I paid the price but its done and looks much nicer. Its safer to access and I don't have to worry about the firewood sitting on top of the mold. 
I cannot type this without grinning... the day before the storm the girlfriend and I got into a drawn out argument about priorities and she thought the work I put into the firewood area was a waste of time/energy and that the money spent on the firewood was a waste, as we have electric heat.
Obviously that sentiment came up when we were huddled in front of the fireplace for our only heat.

Since I have been getting worse I decided that I would give Tysabri a shot. I had already started the process last year to begin treatments but since I was told we had to move that was put on hold. Enough time had passed that Tysabri said the paperwork process would have to start over. 
I did not want to get my old doctor involved again. I had already milked them for free care over the phone since I had seen him last February. He was nice enough to call back if I reported an issue and prescribe steroids or other meds if needed.
I will have to wait until I see the new MS specialist in late April. 

I have a pharma sponsored MS dinner coming up and the doctor I have an appointment with will be there. I am looking forward to meeting him, I went to one of these dinners last month and he was scheduled but could not make it. I may make mention that I have an appointment, currently taking no DMD, and the attempt to start Tysabri here. Maybe he will try to fit me in somewhere, but I doubt it.  

Getting the hug a lot lately. That causes me to double over kicking off lhermittes. Not happy.

Wednesday, January 2, 2013

Tuesday, January 1, 2013

Grow Up

Its time to grow up and fucking get over it. I know this. I want this. Fucking anger just festers. 
A whore showed up in my life on this day a couple years ago bringing a whole sack of MS with her.
Obviously I do not blame her for me actually having MS, but I am confident it would have not taken me down like it did, and not as soon as it did if it were not for her. I don't care if I am wrong. 
The fact does remain that the way life has played out since has left me the way I am today as a whole, and I fucking hate it. 
I only ask for a few more fucking years!!

We have not kissed in two years. I love you has not been said in two years. 
Two years ago, I kissed her goodbye, and told her I loved her as she left for work. Found out that evening she was not being faithful and we simply never kissed or loved again. 

I cannot even say to myself that I love her. I don't know that I do. I have already spent a week away from her and it may be another two weeks before I see her again due to the car accident. 
She is wanting to be home, and I guess that she misses me. My delusional mind says she is worried I will realize that I don't want or need her. 
I have immensely enjoyed the peace and quiet since no one is here. 
Saying this out loud sounds like shit; I enjoy her cooking, her cleaning and she feels better than my hand. Surely it hasn't come to that. That has to me being an asshole. 

I am aware enough to recognize how abnormal and unhealthy that relationship is. It's almost as if the part of me that should be handling that died. I simply walk around in confusion, a basic carbon matter with no ability to make a decision. 
I truly feel like a part of me is missing. I am not who I was.
A lesion must be on a very important part of my brain. A part that was critical to me. 
A sorry ass shell of the former. Head hangs low when it was in the clouds.

Grow up and make a decision you dick, accept the regret however it plays out.