tag:blogger.com,1999:blog-31782559774727805802024-03-19T06:21:09.940-04:00AnonyMSA Multiple Sclerosis blog. Written to myself. There is crude language and topics here.Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.comBlogger110125tag:blogger.com,1999:blog-3178255977472780580.post-58219352758645428972015-09-27T01:48:00.002-04:002015-09-27T03:25:04.761-04:00Update 9/27What's it been? Seventeen months?<br />
I am going to try and remember what has transpired in that time.<br />
Some shit has gone down.<br />
Some shit is different, for better or worse.<br />
Some shit is still, shit.<br />
<ul>
<li>Moved again, another big one. Much happier here. Big change. Relocating every few years feels right. </li>
</ul>
<ul>
<li>Still on Tysabri. Been about 20 months or so.. still get night sweats for a couple days after. </li>
</ul>
<ul>
<li>Since last update usual roller coaster of goofy symptoms. Had run in of vision issues a couple times, on top of existing right eye blur. Nothing that has stuck around more than a week or so.</li>
</ul>
<ul>
<li>Done some traveling when possible. Been trying to use time left wisely and see shit. Aside from visiting a few major cities, hit up some natural sights. The tallest/largest/oldest/whatever this or that.. Enlightened with tons of natural history and prehistory shit. Created in six days...suck my cock. </li>
</ul>
<ul>
<li>Still with same girl, fourteen years, we'll give it a couple more before calling it quits. Fucking love buzz and love sickness. Like a couple junkies at times... Some days its truly euphoric, in the clouds, and others its fucked beyond it all. Putrid/sad/pathetic/desperate on both parties. </li>
</ul>
<ul>
<li>Do not have a dog yet. I feel like the time to get one is coming. Its been hard dealing with the reality that <u><b>you will lose this love again</b></u>. It hurt so much with the last dog. I cannot express how much I miss her. Blah Blah Blah, the love you receive is more than lost, whatever, it was devastating. <a href="http://anonymsbs.blogspot.com/2011/11/worst-day-ever.html" target="_blank">literally sending me to the hospital</a>. Selfish? Maybe, but give me time. I will have another dog (or more) in my lifetime. It breaks my heart and brings tears just writing about it........ she left a hole in me and I always step in it.</li>
</ul>
<ul>
<li>The cat that was "<a href="http://anonymsbs.blogspot.com/2013/10/updates-and-additions.html" target="_blank">rescued</a>" has turned into a fine member of the household. She is closer to a dog than a cat. She fetches and comes when called. gf is jealous of the connection she has with me. She's my buddy. </li>
</ul>
<ul>
<li>There was a major, major, potentially life altering run in with the law over a felonious amount of weed. Thankfully the country is changing and shit gets dismissed. Don't do two illegal things at once and you're good. </li>
</ul>
<ul>
<li>Still using a cane because of balance and occasional gait issues. Been walking a lot in the last year. Since we relocated, we are in a city with tons of greenways, many miles of them.. Walk nearly every day first thing in morning, occasionally in evening. Distance really depends on how body is feeling and the weather. Worked up to average of 2+ miles each time. There are days though, I can barely hoof out a mile, usually due to heat or body simply giving up. In our travels, completed some hikes that were rough but rewarding. Had a couple stretches with pseudo exacerbation putting me down for a couple weeks and didn't walk. </li>
</ul>
<ul>
<li>The balance issues have really been bothering me as it feels like one symptom that I cannot reign in the least bit. With all other quirks, there are ways to prevent or lessen their effects. But the fucking balance... Haven't been to physical therapy in person, but I have attended online via youtube.. no improvement. Doc said sometimes it cannot be corrected through conditioning or training, some damage is irreparable. </li>
</ul>
<ul>
<li>Got involved with WalkMS this year more than I have in previous years. Made friends with folks at a local radio station. They were nice enough to sponsor the MS walk and ran free spots and advertised the event. They had a great turn out. Nice of the station to do that. They jumped all over the moment I asked. Going bigger next year. This is a major city but the MS Walk is not planned to its full potential. Going to try and mimic some things that are big draws at walks in other cities. I have to admit, I am a little iffy about fundraising for NMSS, I feel like there are some other MS organizations with less politics and money is being utilized more efficiently.. in meantime, awareness was immediate goal. </li>
</ul>
<ul>
<li>Having MRI soon, been over a year. Need check up, at risk of PML. Been having some activity lately that is a little alarming. Its the multiple things stacking up at once that are unsettling. <span class="st">Lhermitte's sign</span> has gotten a little touchy. It used to take a certain amount of bend to spark it. Now it has a wider range to the left or right when dropping chin. It just seems easier for it to kick. Recent vision issues in left eye (better eye) and headaches originating from right eye is a bummer.</li>
</ul>
<ul>
<li>Still deal with roller coaster depression. I think its hid well. No need to involve the world in my bad attitude. Simply suffer in silence. I can say with all confidence, no matter how bad it gets, I am never a threat to others. I just suck it up and go on with it. </li>
</ul>
I am having trouble remembering everything else. there is a lot of
little things sprinkled in throughout the year plus, multiple
concerts/events, always trying to keep active with something. If there's not a specific scheduled something, its trying to see/visit something for the first time.<br />
<br />
The doctor said he would like to see me on Lemtrada. I would likely give that a go, but I have been seriously considering stopping all DMT after Tysabri.<br />
I would just ride it out. Whatever exacerbations come and what they bring is what it is.<br />
Ride it until it gets to that ledge. The point of losing independence. At which point, I would turn to complete independence. I am already, truly, at peace with that reality. <br />
<br />
Thank you to anyone who had sent a message during this 'hiatus'. I appreciate the thought.<br />
I hope everyone is well (enough).<br />
<br />
I'll write again when I have time/desire/whatever brought this about.Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com7tag:blogger.com,1999:blog-3178255977472780580.post-40541304479958099192014-03-05T09:03:00.000-05:002014-03-05T09:08:14.443-05:00Update 3/5It's been a minute. Things have happened since last update four months ago but haven't felt like writing.<br />
<ul>
<li>Started Tysabri after dropping Tecfidera. Side effects were shitty and did not subside. First infusion was a couple <strike>days</strike> weeks ago. Seemed to go well. Only dealt with drowsiness as a side effect. Some burning discomfort in arm during infusion. </li>
<li>Biogen is paying for the drug and infusion with their financial assistance program. The program covers the entire drug cost and first $100 of infusion/administration. The infusion center was nice enough to lower the cost so I pay nothing out of pocket. Nice place with private rooms. I don't own a recliner but the one there makes me want one...</li>
<li>Got a shingles vaccine a week before the infusion as recommended by my neurologist due to the increased risk of shingles while on Tysabri. The vaccine is expensive, over $200. The local mom/pop pharmacy that I already use turned out to be the cheapest out of half dozen places I called and price checked. Getting the vaccine while under 55 years old is using it off label, hence no financial assistance available.. I would have been really pissed at myself if I ignored the recommendation and ended up with shingles... </li>
<li>That motherfucker caused a really bad reaction. Injection site on arm turned dark red and hot to touch, then my whole arm got swollen. I was in total body pain (more in arm) for a few days. Benadryl was the difference maker. Took me a couple days before I sought attention for the swelling, and after benadryl recommendation, over night it was making decent changes to the swelling and redness. </li>
<li>Currently dealing with another exacerbation that has brought on ANOTHER bout of optic neuritis. Now with double vision on top of the blurred vision. If there is a positive, the blurred vision makes the second image slightly transparent so its not as defined as it would be otherwise. Dr. is holding off on more steroids since I had two rounds, plus Acthar in the last 11 months. He wanted me to get the Tysabri infusion done and would go from there..along with double vision is increased discomfort/pain in both eyes (more in right). Headaches from full day of use have increased. Bladder is useless on demand. </li>
<li>It's been cold as fuck this winter. Power bill to heat has been out of control. I thought I was going to move around this time of the year so I did not buy more firewood. Luckily we have not lost power this winter yet. I have kept a couple days of firewood set aside in case we do. Wish I would have bought some, could have kept the bill down. </li>
<li>During the fall, an old steam locomotive was making special excursions around my state and to others. I happened to come across someone selling a single ticket, got it for more than half off. Took nice train ride to the town I used to live in. Had lunch with a friend and rode back home an ounce heavier. That was so much nicer than driving over there. I was able to get up, walk around and use the bathroom as needed. When I drive over there (about once a month), it takes two hours each way and I do it without a single stop, and drive back the same day. It really beats me up and got old the first time. </li>
<li>February marks three full years since the girlfriend and I last kissed. Initially for the first several months after I discovered her infidelity, it was simple thing to give up. As time went on, it became a forgotten thing of the past. There's no attempt to kiss between us. There's no other sign of affection that would draw the moment closer, its just a thing of the past. Its been only on an extremely rare occasion where I have witnessed a kiss/embrace that left me feeling a little envious. I find myself shrugging it off with a thought reminding myself that its all bullshit. Fucking and sleeping is the closest we physically get. I wonder sometimes if I have forgotten how to kiss.. </li>
</ul>
<div>
Additional vision issues are making work more cumbersome. I am staring down at my last one or two decades and I refuse to spend it working. I will be filing for disability before too long. I just have too many things I want to get sorted before going on disability. I need to get to a state I can stand to live in.<br />
I am running out of time. Need to figure this shit out soon<br />
The idea of dying in a car accident after all of the working and struggling so far is extremely disappointing.<br />
Really need to squeeze what little enjoyment I can possibly get from my time left...its difficult having no direction and no goal. <br />
<br />
I drafted this post two weeks ago, and left it to decompose. Get it together dickhead.</div>
Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com28tag:blogger.com,1999:blog-3178255977472780580.post-58500235015186944112013-10-09T19:53:00.001-04:002013-10-09T19:53:21.837-04:00Updates and AdditionsI have been very busy, but not too busy to write. Just a lack of desire to actually type and rehash bullshit.<div>
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.</div>
<div>
<br /></div>
<div>
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. </div>
<div>
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. </div>
<div>
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. </div>
<div>
<br /></div>
<div>
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.</div>
<div>
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. </div>
<div>
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.</div>
<div>
<br /></div>
<div>
Another good thing is we got a pet. Its a cat, and shes been with us for almost two months.</div>
<div>
While visiting the girlfriend's parents there was some kids walking around holding a kitten by it's neck.</div>
<div>
I yelled at these kids a couple times when I would see them carrying it like that, telling them how to hold her.</div>
<div>
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.</div>
<div>
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.</div>
<div>
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.</div>
<div>
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..</div>
<div>
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.</div>
<div>
<br /></div>
<div>
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.</div>
<div>
<br /></div>
<div>
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.</div>
<div>
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...</div>
<div>
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.</div>
<div>
<br /></div>
<div>
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.. </div>
<div>
I have had my eye on some groups that meet up here but always miss them for one reason or another.</div>
<div>
I was going to try my luck with a meditation group, an atheist group, and an IT/Sysadmin group. </div>
<div>
Don't care to socialize with these people but I am on a mission. </div>
<div>
<br /></div>
<div>
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. </div>
<div>
<br /></div>
<div>
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.. </div>
<div>
Hopefully they get their shit together before long so I can get the ball rolling.</div>
<div>
I have managed to work through all the troubles so far but this bout of ON is really making work difficult. </div>
<div>
Seems like everything now is just a waiting game.. </div>
<div>
<br /></div>
<div>
I know I am forgetting something. Oh well, till next time.</div>
Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com14tag:blogger.com,1999:blog-3178255977472780580.post-66913799766714053062013-08-09T17:37:00.000-04:002013-08-09T17:39:04.286-04:00Update 8/9Thanks to <a href="http://sherristakes.com/2013/07/big-pharmaco-surprised-me" target="_blank">Sherri</a> 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.<br />
<br />
Made another run to old town for cannabis.<br />
(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.)<br />
I called my old Psychologist a few days before the trip and made an appointment with her.<br />
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.<br />
<br />
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.<br />
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.<br />
For a service dog, they were apparently misbehaving this way which led to another verbal push for a dog.<br />
<br />
<a href="http://fox17online.com/2013/08/07/a-plea-for-assisted-suicide-terminally-ill-woman-wants-to-donate-organs/#axzz2bVa4RN7a" target="_blank">This.....</a> 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.<br />
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.<br />
I will not live like that for a moment... I will drown, cut, electrocute before I ever <strike>live</strike> die in that situation.<br />
I simply will not require assistance. I want to write my own ending.<br />
<br />
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.. <br />
Every one of us have some function in keeping the wheels greased for them.Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com4tag:blogger.com,1999:blog-3178255977472780580.post-73837909061397912012013-07-16T19:27:00.001-04:002013-07-17T08:53:43.509-04:00Update 7/16About 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.<br />
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...<br />
I was on-call that weekend and it started in the evening so I had little time to visit.<br />
Going back in a couple weeks, hopefully with no bullshit.<br />
<br />
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.<br />
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.<br />
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.<br />
<br />
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.<br />
<br />
When I called the specialty pharmacy to get my second month of Tecfidera shipped, they informed me that insurance had denied the full prescription.<br />
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.<br />
<br />
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.<br />
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.<br />
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).<br />
My left leg had gotten so numb that I kept double checking its position to make sure foot wouldn't get in the way.<br />
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.<br />
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.Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com5tag:blogger.com,1999:blog-3178255977472780580.post-68176071254824741412013-06-16T16:53:00.001-04:002013-06-16T16:56:27.491-04:00So 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.<br />
<br />
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.<br />
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.<br />
When I am alone, some meals are skipped because of the effort and appetite involved, for I have trouble with both. <br />
<br />
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.<br />
But I fucked up. I got on the fucking wheel. I got on the fucking wheel like a fucking rat and never got off.<br />
I could have jumped earlier but I felt like I would be abandoning my family.<br />
I was watching the ground building the courage to jump, and then...<br />
I jumped, and missed my mark. I waited too fucking long and it found me..... <br />
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.. <br />
<br />
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. <br />
<br />
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.<br />
The suffering has turned me into an old man only waiting for the fucking to be over.Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com7tag:blogger.com,1999:blog-3178255977472780580.post-89996933667928446862013-06-03T13:41:00.000-04:002013-06-03T13:41:14.275-04:00Update 6/3Dropped Zoloft after two weeks. Caused bowel, bladder and sexual dysfunction.<br />
Already elaborated on the issues. Took a few days after stopping for things to return to 'normal'.<br />
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.<br />
<br />
I have just over a full week on Ticfidera/BG-12. So far so good. Only slight flushing and stomach issues.<br />
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. <br />
Time will tell if this can stop the progression.<br />
<br />
Two weeks now after Acthar and no improvement in my blurry eye.<br />
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.<br />
<br />
Still very depressed. Hating life, work, ms, etc...Wasting away, really need a change.<br />
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.<br />
Its been about 18 months since she died, I miss her. Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com2tag:blogger.com,1999:blog-3178255977472780580.post-14287688693150310902013-05-18T09:21:00.000-04:002013-05-18T09:21:07.415-04:00Update 5/18<div>
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.</div>
<div>
<br /></div>
Neurologist prescribed five days of Acthar. Today is the fourth day of injections. <div>
I feel very nauseous about 10 mins after injecting every time and it seems to last for several hours.</div>
<div>
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.</div>
<div>
Starting Tecfidera about a week after Acthar. <div>
<br /></div>
<div>
Doc also put me on Zoloft. I fucking hate to take that kind of bullshit. </div>
<div>
Takes a month or more to fully take affect. Time will tell.</div>
<div>
My moods are not swinging, just a steady low and quiet demeanor. I don't feel like talking to anyone. </div>
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<br /></div>
</div>
<div>
My dick is broke. Cannot get off to save my life. Don't know if its because of the Zoloft, Acthar, or what. </div>
<div>
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...</div>
Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com8tag:blogger.com,1999:blog-3178255977472780580.post-89887997089888655592013-04-18T21:47:00.000-04:002013-04-18T21:47:53.177-04:00"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.<br />
Can't say I am surprised. The progression so far translates to the images..<br />
<br />
I signed paperwork to start Tecfidera/BG-12. I am running out of options and not much to lose.<br />
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. <br />
<br />
Working as much as possible. Trying to keep up with the wave of bills from MRI, steroids and doctor visits.<br />
Really burnt out on the monotonous loop I am in. Work, hurt, repeat. Its difficult to change this up much.<br />
<br />
Right eye is still blurry and legs do not work very well.<br />
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.<br />
When eyes are closed, I occasionally see a flash in right eye, looks like white nerves.<br />
<br />
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.<br />
<br />
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.<br />
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...Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com9tag:blogger.com,1999:blog-3178255977472780580.post-78657122168994207402013-03-27T16:59:00.000-04:002013-03-27T16:59:24.250-04:00Update 3/27Tested positive for JCV. I do not plan on taking my chances with PML and go on Tysabri anyways.<br />
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.<br />
<br />
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.<br />
Doctor put me on three days of Solu-Medrol. Located an infusion center in-network and started the steroids.<br />
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.<br />
<br />
Solu-Medrol tastes like shit. More like rusty metal than shit but its shitty.<br />
I don't know if it caused a body temperature change but my body was in pain. Legs more than the rest.<br />
Hard to say if the steroids kept me up at night or the leg pain, but very little sleep.<br />
<br />
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.<br />
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.Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com2tag:blogger.com,1999:blog-3178255977472780580.post-60521546073101304482013-03-18T09:15:00.001-04:002013-03-18T09:15:25.299-04:00Update 3/18I am unable to enjoy the good without an equal share or more of the bad.<br />
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.<br />
<br />
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.<br />
The pain is in the back of the eyeball and eventually leads to day long headaches starting in the morning.<br />
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.<br />
<br />
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.<br />
<br />
<br />
Ok, so the good.<br />
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.<br />
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...<br />
<br />
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.<br />
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.<br />
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...<br />
<br />
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!<br />
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.<br />
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.<br />
<br />
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.<br />
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).<br />
<br />
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.<br />
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.<br />
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.<br />
<br />
That's where I am now. Half blind but with a doctor.Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com7tag:blogger.com,1999:blog-3178255977472780580.post-2010586301463146932013-03-09T17:21:00.000-05:002013-03-09T17:21:06.834-05:00Update 3/9Completed Prednisone tapper last week.<br />
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.<br />
<br />
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.<br />
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'.<br />
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...<br />
<br />
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.<br />
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.<br />
<br />
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.<br />
I have two additional dinners coming up (my future dr will be speaking at one).<br />
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.<br />
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.<br />
<br />
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.<br />
Lately I find myself mentally somewhere else, don't know where.<br />
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.<br />
If it was depression I imagine I would have seen this before.<br />
<br />Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com4tag:blogger.com,1999:blog-3178255977472780580.post-71193322094893707352013-02-11T01:08:00.000-05:002013-02-11T01:08:05.190-05:00Update 2/11The on call neurologist at the practice where my specialist is, fit me into an appointment late in the week.<br />
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.<br />
<br />
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.<br />
He proceeded to lecture me on how bad marijuana is and that I have to be on a DMD.<br />
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.<br />
<br />
He said that I should be on steroids asap but before he could prescribe IV/oral I would have to do the blood work..<br />
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. <br />
I fucking hate myself.<br />
<br />
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.<br />
<br />
I walked out of that place at my lowest.<br />
I called my old neurologist and notified them of the situation and to see if I could get an oral steroid script.<br />
The office called back the next day after 6pm, I was forgotten, but a PA remembered me on the ride home.<br />
Got my script called in and started yet another round of Prednisone.<br />
<br />
Each round/tapper on Prednisone has been different . The first couple times it seemed to really help, last few, not so much.<br />
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). <br />
<br />
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...<br />
<br />
I had not informed my family about recent exacerbation but I told them this week. I got shit for that.<br />
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 (<a href="http://anonymsbs.blogspot.com/p/timeline.html">http://anonymsbs.blogspot.com/p/timeline.html</a>)<br />
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. <br />
<br />
I have to figure out this blood work bullshit. I have to get it done. Man up you dumb fuck.<br />
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.<br />
Drinking here and there but only a couple consecutive nights. I dislike it enough to know this will not be an issue. <br />
<br />
Whatever.Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com8tag:blogger.com,1999:blog-3178255977472780580.post-82116734072441716452013-02-01T15:53:00.001-05:002013-02-02T02:32:46.030-05:00Breaking...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...<br />
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... <br />
<br />
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... <br />
<br />
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)<br />
<br />
The gf is talking about leaving now. I think shit just got too real for her.<br />
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.<br />
<br />
<br />
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. Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com16tag:blogger.com,1999:blog-3178255977472780580.post-36230591172529739572013-01-28T09:43:00.001-05:002013-01-28T09:50:25.662-05:00It 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.<br />
<br />
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.<br />
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..<br />
Basically existing issues are magnified.<br />
I can only stand on them with aid and I walk by shuffling my feet. I REFUSE to get in that fucking wheelchair...<br />
Being the hard headed prick that I am, has left me determined to not use the chair.<br />
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.<br />
<br />
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.<br />
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)..<br />
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.<br />
That is fucking embarrassing, no matter how old you get, what the reason is, or who fucking knows, its fucking embarrassing...<br />
<br />
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.<br />
Everything outside is covered in ice/snow and that makes mobility even harder.<br />
<br />
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.<br />
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.<br />
<br />
I will not live out my life in a wheelchair.<br />
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..<br />
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.<br />
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?"<br />
<br />
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.<br />
<br />
fuck.<br />
<br />
<i>"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."</i>Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com8tag:blogger.com,1999:blog-3178255977472780580.post-28594268095000973992013-01-21T15:25:00.000-05:002013-01-21T15:25:18.138-05:00And...She got back this week after being gone almost a month waiting for my car to get fixed. <div>
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. </div>
<div>
Right after she returned a massive snow storm hit our region knocking out power for just shy of 48 hours.</div>
<div>
Got snowed in for a couple days and luckily we had food from shopping earlier in the week and had plenty of firewood. </div>
<div>
<br /></div>
<div>
The firewood was a triumph for me on a couple levels.</div>
<div>
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.</div>
<div>
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. </div>
<div>
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.</div>
<div>
Obviously that sentiment came up when we were huddled in front of the fireplace for our only heat.</div>
<div>
<br /></div>
<div>
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. </div>
<div>
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.</div>
<div>
I will have to wait until I see the new MS specialist in late April. </div>
<div>
<br /></div>
<div>
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. <i>Maybe</i> he will try to fit me in somewhere, but I doubt it. </div>
<div>
<br /></div>
<div>
Getting the hug a lot lately. That causes me to double over kicking off lhermittes. Not happy.</div>
Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com6tag:blogger.com,1999:blog-3178255977472780580.post-41692155534007631802013-01-02T18:43:00.000-05:002013-01-02T18:43:10.128-05:00King Midas In Reverse<embed allowfullscreen="false" allowscriptaccess="always" flashvars="file=http://a.tumblr.com/tumblr_lt6s6m2Ou31r1x0aoo1.mp3&volume=60&frontcolor=0973C7" height="24" id="play" src="http://www.4shared.com/flash/player/player.swf" type="application/x-shockwave-flash" width="205" wmode="opaque"></embed>Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com3tag:blogger.com,1999:blog-3178255977472780580.post-2416895828506368192013-01-01T15:04:00.000-05:002013-01-01T15:04:39.122-05:00Grow Up<div>
Its time to grow up and fucking get over it. I know this. I want this. Fucking anger just festers. </div>
<div>
A whore showed up in my life on this day a couple years ago bringing a whole sack of MS with her.<div>
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. </div>
<div>
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. </div>
<div>
I only ask for a few more fucking years!!</div>
<div>
<br /></div>
<div>
We have not kissed in two years. I love you has not been said in two years. </div>
<div>
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. </div>
<div>
<br /></div>
<div>
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. </div>
<div>
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. </div>
<div>
I have immensely enjoyed the peace and quiet since no one is here. </div>
<div>
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. </div>
<div>
<br /></div>
<div>
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. </div>
<div>
I truly feel like a part of me is missing. I am not who I was.</div>
<div>
A lesion must be on a very important part of my brain. A part that was critical to <i>me. </i></div>
</div>
<div>
A sorry ass shell of the former. Head hangs low when it was in the clouds.</div>
<div>
<br /></div>
<div>
Grow up and make a decision you dick, accept the regret however it plays out. </div>
Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com5tag:blogger.com,1999:blog-3178255977472780580.post-24283947821841057792012-12-28T22:27:00.000-05:002012-12-28T22:27:58.439-05:00on thin iceI 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. <br />
<br />
I decided to spend the long Christmas weekend with the cellmate's family up north. What a fucking mistake.<br />
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.<br />
<br />
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.<br />
<br />
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).<br />
What the fuck... I am glad we are ok and no one got hurt.. but what the fuck man...<br />
<br />
<br />
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.<br />
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.<br />
I also have an issue if I drop my head down, it feels like a rubber band inside me has been pulled tight.<br />
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.<br />
<br />
Application for federal insurance is awaiting approval. Neurologist referral request has been made. I will be seeing an MS specialist. I will give it <i>their</i> 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.Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com5tag:blogger.com,1999:blog-3178255977472780580.post-84243875460850671962012-12-11T08:40:00.001-05:002012-12-11T08:46:26.413-05:00Moved 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.<br />
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.<br />
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.<br />
<br />
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.<br />
Its over with, paid for and done..<br />
<br />
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.<br />
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.<br />
<br />
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 <a href="http://en.wikipedia.org/wiki/Community-supported_agriculture" target="_blank">CSA</a> box from a farm and based food for the week around the varying veggies that came in that box.<br />
There are endless amounts of shitty fast food here and the population apparently enjoys it as they are fatter than fuck.<br />
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.<br />
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...<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
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...<br />
<br />
Time will tell if I can get comfortable here.Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com7tag:blogger.com,1999:blog-3178255977472780580.post-87614303929541073852012-10-30T03:50:00.001-04:002012-10-30T03:50:44.704-04:00Another year...another symptom.This blog is one year old with 90 posts completed.<br />
Its been a long year since I started this blog. My physical and mental state have been in decline since I started this blog.<br />
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.<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
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.<br />
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.<br />
I did not go to a doctor for blood work, so I do not know what my Uric Acid levels were.<br />
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.<br />
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.<br />
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.<br />
<br />
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.<br />
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.<br />
<br />
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.<br />
I have that weird numb pain. How you can be in pain where its numb is beyond me and I cannot explain.<br />
<br />
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.<br />
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.<br />
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.<br />
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.<br />
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.<br />
<br />
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.<br />
<br />
Thanks for reading, now and then.Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com6tag:blogger.com,1999:blog-3178255977472780580.post-9390223302800398082012-10-10T07:42:00.000-04:002012-10-10T07:42:06.902-04:00Finally.Someone threw me a fucking bone.<br />
<br />
Found out at my last MS meeting that someone there was prescribed LDN by a doctor at the same practice I go to.<br />
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).<br />
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.<br />
<br />
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. <br />
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. <br />
<br />
That really is all that's good in this pathetic life. Still broke, have not moved yet. Still unhappy and feel like shit.Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com1tag:blogger.com,1999:blog-3178255977472780580.post-4859441945829136062012-09-24T07:49:00.000-04:002012-09-24T07:49:11.321-04:00Waste of timeNothing here but bitching about the "vacation" I just returned from.<br />
Earlier in the year the cellmate's family booked a beach house on the eastern coast.<br />
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.<br />
It proved exactly why I should not listen to anyone and stick to my own decision making.<br />
This was my first vacation in two years.<br />
<br />
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.<br />
<br />
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).<br />
Three days into the visit, they were asked to leave...<br />
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.<br />
<br />
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.<br />
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.<br />
<br />
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.<br />
I do not get vacation pay or sick time off. An entire week of pay...<br />
<br />
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.<br />
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.<br />
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.<br />
<br />
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.<br />
<br />
If anything came from it, in my alone time I was hard on myself enough that I will say "No." when I want to.<br />
<br />Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com6tag:blogger.com,1999:blog-3178255977472780580.post-66516313346122799562012-09-07T09:34:00.001-04:002012-09-07T09:34:21.142-04:00Update 9/7<br />
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. <br />
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.<br />
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. <br />
I know at some point something has to give, but in the present I want to move before winter rolls around.<br />
I just hope my body can hold up and not get worse.<br />
<br />
Still moving to another state nearby. I am going to try to continue my country living and void the city life.<br />
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.<br />
I have restricted myself to a diet of mostly organic foods, very little meat at all.<br />
All meals are prepared when I eat them, I don't buy prepared foods or processed foods.<br />
I have stuck to this for over a month now. Stop smoking almost two months now. I am trying.<br />
<br />
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.<br />
<br />
Back to work. <br />
<br />
<br />Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com2tag:blogger.com,1999:blog-3178255977472780580.post-77924621134310544552012-08-20T19:02:00.003-04:002012-08-20T19:02:40.239-04:00DeniedWent 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.).<br />
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!?! <br />
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.<br />
<br />
This was the only doctor I could find that prescribes LDN and does not charge over $500 for the first visit.<br />
I will have to wait until after I move address this again.<br />
<br />
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.<br />
I am losing my faith in people, humanity will be dead with God. Anonymshttp://www.blogger.com/profile/00529465358567812064noreply@blogger.com3