Wednesday, November 19, 2014

Yup. My truck died on me. I noticed a severe reduction in power one day. Still I made it to work and back. The next day it was driving the same and about ¾ the way to work the engine shut off. I pulled over and it would not start.

My friend helped me tow it to his house with his Jeep since he lived right there. I rented a car and it took me around 24 hours to get that sucked towed to the shop my friend works at. No compression in Cylinder 3 and one other cylinder had very little compression. Not sure what is causing the dead cylinder but the car Is too old to survive only being half rebuilt and since I can’t afford 3-5 thousand bucks for a new engine the car is done.

Not sure what to do as I am not the kind of person to knowingly deceive someone (and cause them to experience what I am now) but I need a car to get to work. The bus system is a joke and not an option is sub zero temperatures. I spent all my money, all my savings, and maxed out all my credit card to pay for the rental, the tow, and the shop fees.

I am so tired of buying used cars from private sellers, I always get screwed over somehow. This is extra disappointing because this was my “dream car” as a teen to work on.

A co-worker helped me get around today and she is giving me a ride to work tomorrow and she wants to help however she can but how long can I expect her to do that? She is such a nice lady but I hate to be a burden.

I don’t know what I am going to do yet, I work a short shift tomorrow and a full shift the next day and then I have a 3 day weekend to figure something out. Man, every time I think I am getting ahead I fall further behind. This sucks. It can always be worse though…

Sorry I was so short, I am stressed and super bummed I feel defeated.

Saturday, November 15, 2014

So all I have had (it seems) are excuses for why I am not writing and I am getting tired of hearing myself say it. It’s been so hard to work full time, take care of bills, errands, and just… life. So yeah, that was an excuse. Here is another one; I have had a lot on my mind lately. “Soul searching” you could say. I have a hard time wanting to do anything but lay down and just think; stare at the ceiling and simply contemplate. I am not depressed or anything I just feel like I need to think because I am so busy on a daily basis that I don’t even have time to explore my own thoughts you know? Right now I wanted to do just that; I got home from work, ate, and just wanted to lay down and THINK but instead I forced myself to sit down and write a bit.

I am not going to share what has been on my mind, lots of personal stuff I suppose. Well that and the repeating question, “what am I going to do with my life?” as in a career. No, more than that, a legacy; what will the legacy I leave behind be? Maybe that sounds weird but it means something to me; I want my life and all that I have been through to matter somehow and I have not found the way that I feel accomplishes that properly just yet. I know it will come in time but it annoys me; I wish I knew the answer NOW. I don’t have that feeling of fulfillment in life.

Anyways, what have I been up to? Well, besides work, I have been enjoying the weather. It has been in the teens and occasionally the low 30’s (-18 to 0 Celsius) and I love it. We had snow a few days and it has not melted since it has been so cold. It’s funny though; it felt cold at first but I acclimated so fast. I got out of work tonight and it was about 10 degrees outside (-12C) and starting to snow and I felt fine in my T-shirt and work khakis. A co-worker was outside smoking all bundled up in thick jackets and he said, “so you aint got nothin’ but a T-shirt on and you feel fine? Oh that’s right, you told me you like the cold” haha it was kind of funny. When we hit 35 yesterday I actually felt warm! Although, as soon as a breeze hits my Raynaud’s Phenomena symptom kicks in and my fingers feel like they are going to fall off even if my torso feels warm. I will explain what Raynaud’s Phenomena is on pretty soon so check it out when it’s published.

Surprisingly the cold has not affected my spasticity at all. It feels great! I actually started wondering if maybe I don’t have constant spasticity; I stopped taking Baclofen and I feel no different. I wonder if maybe my stiff walking is just a compensation for my poor balance/leg weakness? I walk heavy on my heels, I thump so loud on flooring that has space under it like a room; maybe I am not walking as much as I am lifting a leg and then slowly falling on it preventing me from properly stepping smoothly from heel to toe. I just land on my heel and then move to my toes; two separate actions instead of one fluid motion. It’s hard to explain. Point is, the cold is not making my legs all tight and stiff. It only affects my hands so I need some really nice gloves.

I looked at some battery powered heating gloves and wow, they are cool, but expensive. Some just need a paint job and BAM; you have Ironman’s armor! I think I will settle for a really nice pair of leather gloves.

I can’t think of what else has been going on. I need to write about everything  as it pops up because trying to backtrack and recall everything that has happened is so difficult. Hopefully I will find a way (personally) to start writing again because I definitely have a little more time to write thanks to the Ritalin. It’s really a life savor. I can function just as fine on 7 hours of sleep now so that is an extra hour everyday to get stuff done. I just need to utilize that time but as I said; I am basically experiencing writers block because I have so much on my mind and I just can’t force it.

Saturday, November 8, 2014

An LP (Lumbar Puncture; AKA Spinal Tap) is a procedure in which a needle is placed between two vertebrae of the lumbar (lower back) area of the spine to extract cerebolspinal fluid (CSF). Cerebolspinal fluid is a clear liquid that surrounds the brain and spinal cord (to help cushion the CNS) and is usually extracted for diagnostic purposes, for example; diagnosing Multiple Sclerosis by looking for myelin proteins in the CSF. Fun fact; The CSF that your brain floats in effectively reduces the brain's weight by 97%, which keeps the brain from crushing under it's own weight. (Elaine N Marieb & Katja Hoehn.)

The Procedure

The procedure is pretty simple and though many people may say it is painful I would say it depends on your doctor. My first neurologist sucked at it and hit a nerve so that felt pretty weird. My current neurologist is so good at it I don't feel a single thing, maybe just a minor pinch! So don't let all the hype on the internet scare you.  

First they will have you get into a medical gown so they have access to your back. Next they will either have you lay arched on your side or arched over a table sitting up. They will feel around your spine for "the right spot", shoot you up with some local anesthetics (usually 3 shots), and then insert the LP needle that allows your CSF to leak out into a vial. One Bandaid later and your all done!


I have read some articles online that claim that everything I am about to tell you is a myth but this claim is a total load of crap! So, with that being said, the split second they pull that needle out you should lay down (After they place the bandage on of course). My doctor usually has me lay down in the office for about an hour before letting me leave because if you sit up you will most likely get the worst headache you have ever had in your life. Why? Well let's think about it; Your CSF surrounds your brain which maintains a certain pressure in your spinal cord and around your brain. After you take some of this fluid out that pressure now drops because there is less CSF pushing against your brain. By laying down the CSF that is left in your spinal cord and around your brain will spread out and keep things pretty level but if you sit up all the CSF rushes down (thanks to gravity) to the bottom of your spinal cord further reducing the pressure that is (and should) be pushing on your brain.

It is recommended that you lay flat on your back for at least 24 hours after the procedure and drink as much fluid as possible! In adults, there is about 150ml of CSF floating around and that is replaced every 8 hours or so. Drinking fluids helps replace what was taken out. You can pretty much drink anything and beverages with caffeine are said to help prevent a headache. I usually stick to water, coffee, and juice, but mostly water. They say that for every drink you have with caffeine in it you should drink an equal amount of liquid without caffeine.

What is a Blood Patch?

If you do get a headache, in addition to drinking fluids and laying down, regular over the counter (OTC) pain relievers like Ibuprofen may help as well. I have read that around 15% to 50% of patients experience this headache after an LP because the hole that was made in the spinal cord has trouble closing and your CSF continues to leak. If your headache doesn't go away in 24 hours or so you might want to contact your physician who may give you what is called a "blood patch". All this is (basically) is the adding of your own blood into your spinal cord so that it will clot and help plug the hole where your CSF is leaking. I have never had this done but after my first LP I was just about ready to ask for one because I think my headache lasted about a week or so! It was miserable!

So Just Remember...

Lay down, rent a movie, relax, and drink plenty of liquid!  After my last LP I drank about 5 water bottles, a cup of coffee, and a lemonade. I laid down for about 24 hours and took it easy the next day not doing anything strenuous like heavy lifting. I had NO HEADACHE  and by the day after I was back on track with my life!

Marieb, Elaine N., and Katja Hoehn. Human Anatomy & Physiology. 7th ed. San Francisco: Pearson Benjamin Cummings, 2007. Print.
OK so some of you know that the other day I started taking Ritalin (Methylphenidate) since I stopped the Nuvigil about a month ago. At first my doctor was recommending Adderall but I had some concerns that I was unsure could be addressed. I tried to make it through the month with nothing but coffee and it was horribly difficult. So on Wednesday they offered Ritalin since I was ready to try something new despite my previous concerns.

When I got home and read some of the potential side effects I was pretty worried. Headaches? Same as Nuvigil, great. Psychosis? Well that is a new one. The list went on and since I am usually the lucky guy who gets the rare side effects (if any at all) I was worried. Loss of apatite; great for trying to put weigh back on… Well I took it anyways. Can’t know if it works until I try it right? The first day I didn’t really notice anything. Yesterday however, yesterday I felt great. I had energy, more than I have had in a while. I also started taking Aleve for the aches and pains at work and I tied that just right so I felt good at work! Not fine, GOOD. No insomnia as I was expecting, good sleep. I have been waking up before my alarm goes off and even with 7 hours of sleep (instead of my usual 8 that I could not stray from) I feel great.

I also bought some new foot orthotics (Dr. Scholls) and though it feels weird at first I think it is helping with my knee pain. I can walk across my second floor apartment much quieter that is for sure so I am sure who ever is beneath me can appreciate that! I am still waiting to notice and cognitive differences, mainly my focus, attention span, and problem solving skills. I have heard it really helps with all that fun MS stuff but so far not so much. Maybe it takes time or I have to adjust the amount I am taking since right now I am starting off at the lowest amount (10mg twice a day). Either way I am just grateful for the energy and lack of side effects (thus far) because now I feel like my days are longer (in a good way).

So if anything changes I will be sure to let you know. Sure it’s a Schedule II drug and sure getting off (when the time comes) can be rather difficult (so they say) but I am liking it’s effects so far. It is much easier to be positive about the near future when you don’t feel like passing out and your not in as much pain. Now I can work on my next goal; finding a new job so I can visit my loved ones in California for Christmas!

Tuesday, November 4, 2014

The other day I woke up feeling a bit nauseated. I was hoping it would pass so I got ready for work and made my way there feeling no better than I had when I woke up. When I got to work, I let my manager know that I needed to go home sick but I should be good enough to stay till they could find a replacement. As I started my day (planning to stay about 3 hours) I started feeling worse. The nausea was not phased by my attempts to ignore it. Now my legs were feeling really weak with each step I was unsure if my knees would buckle under the weight of my upper body. And hour an a half in and I could not do it. I talked to my manager and explained that I would not be able o stay any longer and she told me it was fine, I didn’t have to stay till they found someone, I just needed to rest. That was nice, so I went home.

When I got home I fell into bed and knocked out for a good 5 hours. When I woke back up I thought I was feeling pretty good. Maybe I ate something bad? I decided to take a shower and go to the store. So far so good. After a while however, my stomach started cramping… I drove home from the store and by time I made it inside I was starting to experience a sharp pain just beneath my sternum. It was getting worse and I called my mom to ask her what she thought it was; she said it sounded like a gallstone. Then it all came back to me… about seven years ago I experienced this same exact thing and gallstones were the conclusion I came to. I didn’t go in to the doctor’s back then because that was still when I wanted to avoid the doctors at all cost (little did I know what would be coming in August of 2010). This episode of abdominal pain lasted about a week before it subsided.

Now it was back and after doing some reading online it looked like I was due for another “episode”. I was hoping it would ease up and I could make it to my infusion on Wednesday where I could ask for pain meds and all the testing to confirm what ever this may be. It got worse and worse that night though… if I had to imagine what it feels like to have a knife plunged into my upper abdomen that is what I would think it feels like. I took a bunch of Benadryl to fall asleep and even still it took me a couple of hours twisting around in my bed trying to find the least painful position I could.

The next day I felt much better, just a heavy pressure where the pain once was. I tossed around the idea of holding off till Wednesday again but then I thought about how miserable I was the previous night. What if that happened at work? I could barely walk that night and if it hit in the middle of work how would I get home? So I called off again and went to Urgent care. I hate Urgent Care. I forgot how miserable it is and though it’s not as bad as the ER it is still not fun. I checked in at 9:20am and was not placed into a room till about 1:20pm. Then I waited about 45 minutes for the doctor who walked in, asked a few questions, told me it probably was not my gallbladder but an ulcer, instructed me to take antacids, have my doctors order the right tests on Wednesday, and to wait in the waiting room for a prescription for Zantac… 5 hours of my day, of my life, was gone, 5 hours to be told to go see my doctor and take some OTC medication for stomach acid issues. I told him OK, left the room, walked into the waiting room, and left the building. I was not going to wait another hour for a prescription for something that is over the counter and would not help me in any way shape or form.

So I went home and tried to take it easy. Watched a movie, rested, ate dinner, and went to bed. Today I woke up feeling fine and as I enter the evening I still feel ok. Hopefully this doesn’t come back but I will be sure to bring it up on Wednesday.

I did a lot of thinking over those 5 hours and for the remainder of the day… One thing I couldn’t stop thinking was “I don’t have time to be sick with MS and maintain a life let alone be sick with something else, plus MS, plus some sort of weight loss issue, plus the need for some sort of physical therapy routine, plus maintain a life”. I was so overwhelmed, there was too much on my plate! I have always said that when MS strikes the world doesn’t care, it keeps on spinning. Then I realized that MS doesn’t care that you have work and bills, it strikes whenever it feels fit. Same with any sort of illness. Then the most depressing thought struck me; a thought I have already had when I was first diagnosed, but now? Now it actually had some weight to it that it has never had before. “I am going to live with this for the rest of my life. I have to climb the same mountain as everyone else but with 200 extra pounds (90kg) on my back”. The definition of the word “chronic” just got so much longer.

I talked to a friend online (who also has MS) and though we were not 100% directly talking about this situation, everything he said related to what I was going through. It made me think a lot (our conversation) and I had to remind myself how far I have come. Apparently I had told him a while ago that my goal was to move out by October 15th and I had actually met that goal ahead of schedule. About two and a half years ago I was in a wheelchair being spoon fed thinking I may never walk again. Now I moved out of state, I have an apartment, a job, a car, and the ability to do so many things I never thought I would do again. Once I thought about this my depression began to fade. All things considered, my situation is not bad at all. Nothing worth fighting for comes easy right? My problem solving skills are not what they used to be but the problems in my life? They are nothing and I know I can overcome them, solve them, it’s just going to take me time, time to clear my head enough to see the solution.

I feel good physically and mentally today. I enjoyed my day off and I am ready to face tomorrow. I have my infusion, I want to do some job hunting, get all my medical bills organized, and just… be productive. I am going to take control back and plan out my next step since I only planned as far as I am now. I need to figure out what I am moving towards in life and what my ultimate goal is. Most importantly, I need to figure out how to clear this fog out of my head so I can actually see a move or two ahead like I used to be able to because right now I feel like I am living life as someone who simply reacts. It’s like I am at a 4 way stop and I know I have to choose a path but the fog is so thick that I can’t see more than 10 feet down each road rendering me clueless as to where they will all take me. This is no way to live.


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