meesterthomas

[meesterthomas]

Where did Thomas go?

I'm sorry I haven't updated this in a really long time.  I'm not really good at letting others worry about me.  That being said, I've been kinda ghost like for a few months now and I have good friends so a few of you have been concerned and have been checking up on me.  So I suppose that it is time to make a little post and let everyone know what is up.

It has been a very stressful few years and a particularly stressful last few months.  My MS really hates stress and gets activated by it.  So my MS has been getting more and more active lately with December having been exceptionally shitty for me.  I'd usually just leave it at that but for some reason I feel like I should share exactly what my MS has been doing.

So there the “MS hug” that I've been getting a lot lately.  The mild form of this is just a kinda tight feeling in the chest that makes it feel like I can't get a full breath.  The more severe form feels like someone has cinched a corset on way too tight and my ribs and chest hurt and I feel like I can't breath.  That's been happening most of the month, though thankfully most of the time it's been the mild form.  Meditation breathing is about the only thing that really helps with it.

There's been a lot of general neuropathy this month too which is a kind a catch all phrase for numbness and pain from neurological conditions.  On the numbness side, my hands just don't feel quite right, almost like the tips are on a delay from the rest of the finger.  Its frustrating but I suppose in the grand scheme of things, not terribly impactful.  It just means that I open bags like chip bags with scissors instead of normal style.  On the pain side... I honestly can't remember the last time I didn't hurt somewhere.  Its pretty random too, just some place on me has been aching pretty much all the time.  Last bit of neuropathy fun is spasms, basically random muscles or muscle groups getting a move order that I didn't give them.  Sometimes its just annoying because bits of me a twitching... other times it is incredibly painful as the muscles don't know how I want them to move and just knot.  So I've been taking lots of baclofen and tramadol and smoking lots of pot recently, but honestly, sometimes I just wanna be sober and just deal with it.

My mental faculties have kinda been in flux recently too.  There is this foggy pressure in my head that makes it really hard to think.  I went to get cat food at Chuck & Don's and good thing I was only in there for 10 minutes because I left the car door wide open. And the last shitty thing I can think of is that sometimes the fog pressure elevates into vertigo and everything spins.  Usually I just take a benadryl and it goes away but recently it hasn't helped at all.  Christmas Eve I went to take a shower and half way through I felt like I was going to vomit and or pass out from the spins.  I ended up laying on the bathroom floor for a while hopping it would stoop.  When it didn't I had Deb throw towels on the bed so I wouldn't get it wet and crawled downstairs to spend the next few days in bed.

So yeah.  Even as I'm writing this, my arms, shoulders, and neck are aching.  My left pec feels like it wants to knot.  There is what feels like a knot behind my left eye, but I think that's just the fog pressure moving around.  

So some of you may wonder why I haven't really told anyone whats going on.  Well for one there isn't really anything that can be done for it.  Its not like when I'm depressed and some one can just say “ come over and have beers and play cards, that'll fix you up” which totally does help with depression.  With this MS stuff though, beer sounds bad, moving sounds bad, even thinking sounds bad.  Second is a little harder for me to explain.  Like, if I'm just hanging out by myself its all bearable and I can just focus on making it from moment to moment. But when I let others know how I'm doing, well I have a lot of people that love me and knowing just how shitty I'm doing makes them hurt. I know that its just empathy for what I'm going through but I feel like there sadness is my fault so I just keep it to myself most of the time.  

I don't really know how to end this, but yeah.  Sorry I've been so quiet an not told everyone whats going on.  

[meesterthomas]

Back again.

So it has been a super long time sense I have posted.  I'm not really sure why I went silent.  I guess it has just been a rough couple of years with general life stuff and this was meant to be my MS blog.  Surprisingly I haven't had too many stress related MS problems, doubly surprising because I all so haven't been taking the greatest care of myself. Well not taking care of myself seems to have bitten me in the butt.

I had my physical on Monday.  Unrelated to taking care of myself, there is a suspicious spot on my arm that they are going to remove and biopsy next Tuesday.  Totally related to not taking care of myself, I need to drop about 20 lbs, I have elevated bad cholesterol, low good cholesterol, and elevated liver function.  The last one may actually be from my meds but the doctor suspects its all so because I'm out of shape.  He'll do more blood work on the last one when I go in to have my biopsy.  

While I kind of suspected that this was coming, it still wasn't the easiest news to take.  I know I need to take better care of my body but I felt like I was putting all my energy into simple things like making sure the bills were paid and being a potato the rest of the time was just easier.  Taking care of my body was just another thing on the pile and I just didn't want to deal with it.  In retrospect that was a foolish decision as now its going to be a lot more difficult to get back to where the Doctor wants me.  

I was talking about all this with my counselor and he had some interesting suggestions.  I was talking about how hard it is to be active these days and I'm so out of shape plus the MS means everything physical is difficult.  He has two interesting solutions to the problem.  The first one being one push up a day.  The idea being that if you can do at least one a day every day you'll eventually be able to do two then three and so on.  The other idea is getting high and going for a walk with the “one push up” goal of just going around my drive way.  That one feels like it may need an explanation lol.

The reason for this is that I was talking about how my body seems to respond really well to walking but its really hard to do now.  Jokingly I talked about how I so like to walk when high.  We then talked about how pot generally makes me feel better, giving me a bit of energy and making me not hurt so much. We all so discussed how I don't really notice any side effects like I do with opiates or other meds I have.  So now I have the goal of at least 3 times a week getting high and going for a little walk after my morning meds are done with in the mornings and doing one push up a day.

I forget the reason why but my counselor suggested that writing down that I had completed my goal for the day would help me complete it so I'm going to try really hard to post here every day about doing the things I'm supposed to do. I've been kinda bad this week; the news sent me into a little depression sleep for the first bit of the week but Thursday I got both a walk and two push ups in and I got two push ups in today and may go to Costco latter.

So see you all tomorrow,

Thomas.

[meesterthomas]

Is He High or is it MS?

One of the things that has kinda really surprised me sense I've gotten MS is how easy it is to get drugs from doctors.  When I very first got MS and was talking about pain management with my neurologist Oxy was his first suggestion.  I made a surprised face and he said maybe Percocet if I didn't think Oxy would be sufficient.  The real reason I made the surprised face was that I know I have an addictive personality and using either oxy or perc long term present a real risk of addiction and/or dependency.

My neurologist has been with me for 9 years now so we've talked a lot more about drugs when I start use with them.  Turns out the majority of drugs I can take for various MS symptoms have the risk of addiction and/or dependency.  Several of my prescriptions he recommends I not take for extended periods. Temazepam, a drug I take when I have sleeping problems, he recommends only take for a max of 3 days at a time with at least a week break between runs.  I thought he was just being sensitive to my addiction fears but the stuff is so strong that the pharmacy will only give me 14 pills a month.  

So I have established that I have access to quite a few prescription drugs.  The title of this was about being high though.  So first thing about that, what do I mean when I say high?  For me, when I say high I mean altered thinking or cognitive ability  While I can see how a lot of these could be used recreationally, for me its just a side effect.  If I'm just having fun, 9 times out of 10 I'd rather just get drunk.  So why take the drugs if I don't like how they make me feel?  Well lets talk about that a little.

First lets talk about one thats a little more controversial.  Lets talk about marijuana and me.  So the first time I tried pot before it was legal, I thought I was allergic. I got itchy and twitchy and started having spasms so bad my back felt like it was trying to break.  After it became medically legal I had a surprising amount of friends and family trying to get me to take it.  I told them what happened to me and they said I should just try a different strain.  I really didn't want a repeat so I was generally like “ehhh no I'm good, my prescriptions are enough”. After it was fully legalized people started talking about it even more to me.  Finally when I went with a friend to a dispensary I talked to the staff about it and they made some recommendations.  I was still leery but my friend bought some for me to try.

Turns out I am not allergic, just really really sensitive  Unbeknown to me there are two main families and a LOT of different strains of marijuana.  One family, Sativa, I can't handle.  What probably happened the 1st time I tried some was that it was Sativa and I had way too much.  I can have Indica, the other family, and it is the most amazing pain killer I have ever used.  The problem is, like I said, I'm extremely sensitive I had one hit of a strain called Silverback that had me high for 16 hours straight. My favorite strain is blueberry which I can have a tiny puff of to really help with pain and not affect my cognition too much.  The really great thing is it starts working within a few minutes at most of inhaling, often times its almost instant.

My more traditional pain killer is Tramadol.  After talking with a pharmacist about it, its supposed to be a synthetic opioid that has less risk of physical addiction.  I've heard conflicting reports about this though so I'm not really sure. In terms of how it helps my pain, I'd say its OK  One pill takes the edge off the pain and doesn't really get me high at all.  The problems are that it takes up to half an hour to kick in,  if the pain is really bad one pill isn't going to cut it, and even at two pills it rarely make the pain fully go away.  Two pills is the max I'll take at a time, I'm on a low dose so I could take more but, you know, addiction fears and all.  At two pills I feel a bit buzzed, like I had a beer.  The real problem is when I have pain and spasms. Then I have to take Baclofen as well and Tramadol.

Baclofen... I have mixed feelings about this drug.  It is pretty amazing for spasms.  It only takes about 10 to 15 to kick in and, even at the low dose I'm on, relaxes my muscles and makes the spasms go away.  That being said, it is highly addictive.  Like if I were to take it every day for a few weeks I'd need to wean my self off of it.  At higher doses if you don't wean yourself off of it you could die from the withdrawal.  At the does I'm on, it doesn't really alter my cognition at all.  If I take too much at one time though it could make me hallucinate, though because I'm such a scardy cat that's not a big concern. The problem for me is that spasms are rarely painless.  About 75% if the time that I need a Baclofen I need a Tramadol too.  When I take them together it totally make me high.  Worse still is that it isn't really a fun high.  I mean its great that the pain and spasms are gone but it makes my thinking very muddy.  It becomes very hard to think creatively or tactically so most of the games I play are much harder when I take the 2 together.  Also totally don't feel safe to drive on them.

While I have access to many other mind alterers, those are the 3 I use the most.  I often times find myself struggling with which I should take in a given situation.  If I have to interact with others I generally don't like to be high at all. I'd rather be clear headed quick thinking.  The problem is when MS starts acting up, it can be every bit as distracting as being high. There's been plenty of time that I haven't taken anything for days and I feel quite high just from MS.  

I feel like I'm the most functionally high on pot.  I feel like I am more creative, just slower.  I'm also told I'm pretty entertaining when I'm high.  Theres several problems there though.  For one, even though its legal now, you cant just smoke anywhere.  For one pot stinks.  Even though I smoke I totally agree with this so I totally get people not wanting me to smoke at their houses.  You also cant just smoke in public, at least not legally, same lines of public consumption of alcohol.  So it mostly feels like a home alone kind of thing.  There is also still a bit of a social stigma about it.  Having been illegal for a couple generations a lot of people think it must be bad or dangerous to have been illegal so long.  Hell, after my mom found out I was smoking, she assumed that mus just be getting high ALL THE TIME.  She thought all of my e-cigs, that I have been using for years before pot was legal were all now marijuana paraphernalia. I have to laugh at this, but it kinda illustrates public perception.

Tramadol and Baclofen are much more portable and easy to conceal use of.  Even if people see me taking them its much more socially acceptable.  “Oh yeah, he's sick, of course he's taking pills”.  The problem here is that if I am out and about there is a really good chance that I'm role playing or playing a war game.  So I take my pills and my ability to play greatly diminishes. I feel like I'm a lot less entertaining high on pills too.  A maybe TMI problem with Tramadol is that it makes you constipated.  Like to the point where there is now a drug advertised in my MS magazines for treating long term Tramadol use constipation.  

I'm not really sure how to wrap this one up.  I guess the point of it is that there are a lot of times where I am not quite myself.  If you want to know whats up with me that day I'll tell you.  If it turns out its not just MS and I am on something but you're finding me annoying I can try something else while we're hanging out.  I'd also like to thank all my friends for putting up with me even though I'm not really me a lot of the time.

Cheers,

Thomas

[meesterthomas]

A New Start

I don't recall exactly how the conversation came up but I remember complaining to my counselor that I'm frustrated because I don't do anything any more.  I just sit on the couch watching Netflix and occasionally playing video games.  Further more I'm not even watching the things I used to watch like thought provoking documentaries or playing story rich video games.  I'm just watching mindless humor like Archer for the 5th time or playing Warframe and just doing easy missions.  

We talked about why am I not doing anything.  The reason my be obvious but I think I was ignoring it; My MS hasn't been doing all that great lately. I don't really feel like doing anything that requires thinking or getting off the couch.  I don't really like being a lazy couch potato though.  With that in mind my counselor and I started brainstorming things I could do that wouldn't take too much effort but I could still feel like I was doing something.  We came up with writing.  

Now at first I shied away from this idea.  I like writing and want to write all sorts of things but I have found it difficult with MS.  I'll have this awesome idea for something to write and sit down to write it and my brain and fingers get in a fight and I get frustrated and tired and end up giving up.  But then I remembered one for the 1st books I read when I got MS, How to Be Sick.  The author of the book has a mysterious illness that makes MS fatigue looks like normal fatigue  It took her several years to write her book but she got it done.  So I just need to have some persistence.  Do what I can, save it, come back and write more latter.  

So yeah.  I'm gonna start writing a lot more.  The 1st few posts are prolly going to be about my MS but I'll hopefully start writing more from there.  The 1st two topics I want to write about are MS fatigue and MS and drugs, so look for those posts soon.

Cheers,

Thomas.  

[meesterthomas]

8/14 Shot Journal

I am so bad at posting.  After talking with doctors though I should prolly start keeping a shot journal so hopefully at the very least I shall start posting bi-weekly.  I think I'll try to start on Monday shot day then maybe edit the post over the next few days.

3/14 shot date

Before the shot: I havent really been feeling all the great for about 6 weeks now.  I have a feeling it was because of a bad shot 6 weeks ago but that is why I am now paying more attention to the shot process.

Pre-shot prep:  I was plenty hydrated and took 1.5ml of thc/cbd oil with 400mg of ibuprofen before the shot.  Decided to take the shot earlier that I usually do and took it about 5 hours before sleep.

Shot Locations: Left tum.

Shot after care:  Alternately iced and massaged the injection location for the whole 5 hours after the shot. About 30 min after shot had food and before sleep and 200mg more ibuprofen.

Morning after: I got about 5 hours of sleep.  My body feels like it wants to not feel good/ be sick.  I don't feel quite like I have a fever (last 2 shot's problem) though my lungs and eyes feel crusty and gross like I am trying to get sick.

[meesterthomas]

My list of 2016 Goals

I would like to go for a walk 3 times a week

I would like to update this blog AT LEAST on a bi weekly basis

I would like to do some form of non walking exercises 3 times a week.

I would like to start making my weekly goals list of things to get done each week.

It may be a small list but I think if I really commit to these 4 things it will make this a great year

[meesterthomas]

Quick little update.  I saw my neurologist today.  We agreed that I am not relapsing hard enough that I need an IV steroid but that oral steroids are probably needed. So 60mg of pred for the next 4 days, then step down 20mg every 4 day for the next 2 weeks.  Hopefully it wont be too rough but I do have a bad history with steroids so we shall see.

We also think that physical therapy would be good at this point so he gave me a list of PT in the area and I already have an appointment for Tuesday.  

So yeah, guess thats about it.  Still not feeling too great but hopefully the steroids and PT will get me back on track soon.

[meesterthomas]

Update

This week my body is reminding me of things I had forgotten about MS.  I remember feeling uneasy about how hard the Ticket to Work guy was pushing me.  Part of me thought it was just my fears talking and that I really did need to push my self more and more.  Well the thing I forgot is that if you push yourself too hard with MS then the MS pushes back.  I felt feverish and achy Sunday and today (Monday) my arms feel both numb and achy  Its almost like I had slept on them and there are in a constant state of waking back up.

So yeah.  I want to do more but I need to find a more MS friendly way of ramping up again.  I guess the real problem is that I don't really know where the line is.  How much is healthy pushing my limits and how much is over extending?  I'm not sure how to answer either of those questions.  I think my plan for the moment is to just keep doing as much as I can and remember that I have pharmaceutical aide should I need it.  

An other idea that has been kicking itself around in my head is to talk to my neurologist about finding a physical therapist.  It sounds like a good idea, I guess I'm just worried about the cost in both monies and spoons.  But hey what does it hurt to at least look into it right?

Thanks to everyone who hung out with me and helped get out last week.  I still plan on trying to do stuff so at the very least I'll be at Crit Castle Saturday.  

Thanks for reading and I'll post again soon.

[meesterthomas]

General Life Update

Sorry I'm so bad at keeping this thing updated.  A lot has been going on lately so this more of a general what has been going on in my life post that just a MS post.

So Deb and I are supper tight on money right now.  So much so that she has gotten a 2nd job and I was thinking about using The Ticket to Work program to get a job myself.  As you can imagine, with all this going on I have been feeling a bit stressed so I haven't had all that much energy.  I am also feeling a bit foggy at the moment so I fear this post may be a bit scattered sorry.

So Ticket to Work program.  My understanding was that it was a program from the SSA to help people with disabilities find jobs with disability friendly employers.  It has not really been that for me.  The first problem I ran into was even finding someone who was still taking new people or Tickets as they call us.  The first 3 companies I e-mailed sent auto “sorry we're not taking new tickets” replies.  Finally a week later I got a guy to call me and set up a meeting.  

The guy seems well meaning enough, but more of a general job placement service that a disabilities specialist.  He is kinda pushing me to just go for any job I can get and for as many hours as I can get.  He even went so far as to say maybe not wear my ice vest to an interview.  I get that my vest and or MS may scare employers off, but I really need them to know about it so we can work together to make sure I can actually work for them. Also hiding it feels almost like I should be ashamed of it. -shurgs- I've always felt much more comfortable being open and honest about it.  The reason I put big “Medical Cooling Vest” on my vest was to encourage openness about it.  I would rather people ask questions and find out whats going on than stare and wonder and possibly be afraid because of its slightly military look.  So yeah, I don't know that he is really going to work out for me.  We seem to have very different ideas about how to handle the fact that I have a chronic illness and want to go back to work.  

Either way I think life is putting that on the back burner for me.  I am doing my best to be a good house husband and support Deb working 60+ hours a week now.  I'm doing as much of the cooking and cleaning and such as my energy will let me now.  I gotta say it is pretty fun.  I am rediscovering my love of cooking and it is nice to feel like I am contributing more but it is really draining my energy.  I MIGHT be able to work 20 to 25 hours a week and still have enough energy to keep up on chores.

The problem here becomes one of math. If I work more than 20 hours a week at minimum wage I will loose benefits.  At 25 hours a week I would need at least $12 something to make as much as my benefits.  If I miss a few days I'd make less than my benefits.  So it is a bit of a dicey situation.  On the one hand, if I could manage 40 hours at minimum wage I'd make more than my benefits.  On the other, the more days I miss or the less I am able to work the higher pay I am going to need to make it even worth it. That coupled with how much energy it takes Deb and I to do normal chores at the moment make it seem less and less of a real option for me getting a job at the moment.  Hopefully, I will get used to the new activity level and then around x-mass I can get a job.  At the moment it doesn't seem worth it though.  

So thats what is going on in my life right now.  I would like to start getting out and being social again. If I can do that and still keep up on house work I think that would be further preparation for getting a job.  I'm kinda bad at it though so free pass to everyone to tell me “Hey Thomas, we're doing stuff, get your butt over here!” lol

On the MS update side of things, well I'm not really sure.  I have been getting tired a lot lately but everything that has been happening could explain that just as well as medication reactions.  I think I am finally starting to get used to the Plegridy though.  I still feel a bit under the weather the day after a shot, but it doesn't seem to last nearly as long and the injection sight reactions are much reduced.  I just got my blood work back and everything but my thyroid are looking good. MS drugs mess with your thyroid. Looks like taking the larger dose less often means I'm going to need less thyroid medication so thats happy.  

Well thats all I can really think of at the moment.  Thank you for reading.  And really, please help me be more social? Even if its just texts or FB messages, I would like to start working on being more active.

[meesterthomas]

Update

I need to work harder on doint this every week but hey at least I am updating.

So friday was shot week.  It was still bad this week but not as bad as the previous two weeks.  Sat I felt really run down and flu like symptoms but my temp only got up to 99 for a short time.  Sunday I felt super run down all day but no temp so hey thats good.

In general I have felt pretty run down lately.  There are so many things I want to do but I just don't seem to have the energy for any of them.  I want to work on that.  Start going on small waks and doing social things again.  

Not sure what else to report.  Today, monday, I feel mostly ok.  Just tired and goffy headed.  I'll post again in a week or two.  

[meesterthomas]

Belated Update

So I missed updating sorry. Shot two weeks in was kinda bad. Sense it was supposed to be on the 3rd I waited to take it on the 4th after festivities. Again the shot didn't hurt. The next few days kicked my ass though. I woke with chills in the wee hours of the morning. I couldn't get warm and kept putting more blankets on me. With my heat intolerance this highly atypical. When I finally got up I took my temp and it was 101.5. It slowly dropped over the next few days and I was OKish by Thursday. Still didn't have much energy the next week. This week I saw my neurologist. I guess he has 12 other patients on Plegridy. Chief complaint is the shot reactions. The others say it's super itchy too. We're all still early in the treatment but others are having sporadic temperatures too. Last night's shot seems to be more of the same. Didn't hurt but got the chills around 5:30am. This time I got up a took ibuprofen and have kept the temp under 100. If this keeps up it may be a deal breaker. Not much else to report. I will try to remember to post next week.

[meesterthomas]

Weekly Update

2nd huge shot was not as bad as the 1st huge shot.  I still didn’t feel too great though.  The after care tips the nurses gave me for injection sight are really helping but its still taking 3 times what my body is used to is rough.

Like I said though, not as bad as 2 weeks ago.  Also, deb got me some ice cream on Saturday and for whatever reason it really helped.  Core cooling perhaps?  Either way Sunday I feel like my mind is clear for the 1st time in over a month.  My body still hurts but I seem to be able to ignore it if my mind isn’t all messed up to.

I got a lot of cleaning done today and feel pretty happy about it.  My spoons are starting to run out now at 9pm, but all said it was a good day

[meesterthomas]

So the shot was as scary as I thought it would be.  Last Saturday, the day after I took the shot was pretty rough.  It was like having a really bad flu.  I was hot and weak and achy and very sleepy.  I spent most of the day just sleeping.  The side effects have let up as the week has gone on but I still just have no energy.  Today, a week later and I still just feel drained. There is like a fog in my mind that makes doing anything soooo much harder.  

For instance doing dishes.  Pre-shot it wasn't really that big of a deal.  It would take me much longer than a healthy person but I could still get it done.  Now the fog just makes it so much harder.  Instead of just doing it I have to convince myself to do it.  Convincing myself to to it takes almost as much energy as the cleaning itself.  I don't know that that really makes sense.  It is a hard phenomenon to describe, but suffice it to say I haven't really been doing much lately.

In other news, I am pretty sure I misread my appointment card and my neurologist appointment is in July and not June.  I will try to call Monday to confirm but wouldn't be the 1st time I messed up my appointment days.  I also haven't gotten around to getting an appointment to see my GP so I really need to try and get on things this week.

On the bright side, at I'm getting better at keeping this thing going so yay!

Thanks for reading,

Thomas

[meesterthomas]

Scary shot is scary

I am kinda scared to take my shots tonight. 3 times what my body has been used to for the past 7 years. Not looking forward to it.

[meesterthomas]

Update

Hmm this new medicine.  Well a week after the middle dose or 2 times as much as Rebif and I'm still feeling off.  Got another bright red itchy spot from it too, though talking to the nurses from the company I found that icing it helps a lot.  

Its hard to say if whats going on is actually from Plegridy or just MS in general. It is frustrating either way.  I am super sleepy all the time and sleep for 12+ hours in a stretch which screws up my sleep patterns cause if I pass out at say noon and don't wake up untill midnight then I prolly wont be sleepy till 5 or 6 in the am.

I wanted to go play magic or watch to minis wargaming today but I passed out around 9am and didn't wake up till 9pm.  Also, it appears that my legs and hand aren't working so well.  Guess it is another night in.

Well next week is the full dose so hopefully by the end of June I can be functional again.  In the interim I have a neurologist appointment the 15th so he might be able to give me pointers.  I'm also do for a GP visit so maybe have her take a look at my blood and make sure everything is as it should be.

Hey look at me I made and update 2 weeks in a row!

[meesterthomas]

New Meds

Long time no update. Sorry about that, I've been meaning to make this post for a while but for whatever reason didn't get around to doing it till now.  If people want to know more whats going on just let me know.  I find I am better at getting stuff done if it is for other people. Also, bare with me if this post is a little off as I am having a bit of cognitive issues today.

So any how I wanna talk a bout my MS specific meds today.  For the first 7 years of MS I was on Rebif.  It is an interferon that I had to inject subcutaneously (in the fatty bits of my tummy, arms, thighs and butt) 3 times a week.  Now MS meds in no way cure or even stop MS for progressing, it just slows the growth of lesions.  Its hard to say just how effective they really are, some medical journals suggest that they only slow progression by 30%.  I suppose 70 MS events a year would be better than 100.  Of course thats not really taking into account side effects.  

7 Years ago when I first started on Rebif, the only side effect they really mentioned (provided you didn't have an allergic reaction to it) were flu like symptoms.  Now the list is much bigger.  Liver, kidney, thyroid and skin problems are now on the warning label along with depression and suicidal thoughts.  My thyroid has been effected and I am now on levothyroxine.  My skin is getting all jacked up too but currently the only option seem to bee loads of lotion and or to stop taking Rebif. Depression hasn't been much of an issue, other than the thought of “OMG these shots hurt and I don't wanna take the them any more”.

So I was already kinda thinking that I didn't wanna take Rebif any more.  Then at the beginning of this year my insurance decided they didn't want to cover it any more.  The people at Rebif have advocates that are suppose to handle things like this, but honestly they have been getting worse and worse over the years.  This year was a kinda the last straw.  It took about four week to get my meds and during the many many phone calls to both my insurance and Rebif reps every one seemed most interested in pointing fingered rather than just solving the problem.  One of the Rebif reps even tried to say that it was somehow my fault that this was happening.  So yeah, didn't see much reason to stay with them any more.

In late April I went to see my neurologist to talk about new options.  We decided on Plegridy.  It is basically the same thing as Rebif but the molecules have been combined with polyethylene glycol so they stay in the system twice as long.  The needle is 2 gauges smaller so it hurts less.  Instead of 3 shots a week its once every 14 days, so that was 12 a month on Rebif but only 4 on Plegridy.  On the down side, Plegridy is 126mcg a shot which is almost 3 times as much as Rebif.  I find that a little frightening as it took me about 3 months to get used to the 44mcg of Rebif.  

Either way I decided to give it a try. They actually got it out to me really fast.  To help ease the transition to such a large does the first 2 shots are smaller.  On 5/8 a Plegridy nurse came out and instructed me on the auto-injector and I took my first 63mcg shot.  It wasn't too bad.  I didn't even feel the needle.  It did however leave a large read itchy oval at the injection sight.  Also mad me feel a little off for a few days.  Last night I took my 96mcg shot.  The injection itself went great, didn't hurt at all and I don't see any skin reactions.  The medicine hit me pretty dam hard though.  At the time of writing this it has been about 18 hours sense I too the shot and I feel like poop.

My kidney area aches on both sides. My skin feels weird and tingly.  I'm getting hot and cold flushes.  My brain is all wibbly wobbly, effecting my cognition and my equilibrium.  So yeah... full dose in 2 weeks should be interesting. I may need to see about shifting shots to Mondays if I want to do anything on the weekends.  I also fear that they next month may be a little rough.  Hopefully after that though I can work on getting out and being more social and stuff again.  Today though I feel like poop and am gonna watch Netflix in my jammies.

Thanks for reading,

Thomas

[meesterthomas]

"The worst thing about MS"

I often times find myself wanting to say "you know what the worst thing about MS is?" . The only problem is the answer keeps changing.  So I think a more accurate thing to say would be "you know what I'm having the hardest time with about my MS right now?'

The answer to that question tonight is determining if I am getting "really" sick or if my MS is just acting up.  I feel really weak and tired,and I can't seem to regulate my temperature.  The thing that makes me think maybe trying to get a cold is that my lungs feel a bit like they are trying to get full of gunk.

Despite all that, my plans for the week are to get my RX sunglasses, get a Mohawk, get new stickers for my license plates, and to the games store for Infinity and Warmahordes.

I wanna throw gym, putting models together, and getting out Thursday too, but if I keep feeling like this that my be a bit over ambitious.