Friday, April 26, 2013

Climbing back out of hell (thank you steroids)

I was seriously petrified to start a 3 day course of iv steroids when I had read so much on line about all of the possible side effects.  I think most of these seem to be the worst when you are taking them orally and for a longer period of time though.  I did not have insomnia, I was still exhausted from being in a relapse.  I did not eat everything in sight, due to painful indigestion (did have that one).  I did not experience euphoria (would have been a nice change though) and I did not find myself grinding my teeth or being generally sketched out.  Overall, a nagging headache, heartburn and the discomfort of an iv outlet in my forearm for a few days.  Not really worth complaining about.

Also, I feel soooooo much better!  Okay, I'm not 100%, but I wasn't looking for a miracle.  I'm still numb in my leg and tingly in one arm, I'm still super tired.  I no longer feel though like walking 2 steps is just too much.  I don't feel like my whole entire body is off.  I'm not dropping everything I pick up and I'm not holding onto the wall to get up the stairs....this, is improvement.  I have gone through all of my past relapses at whatever pace my body wanted to get through it at.  My last one was a terrible, drawn out, no good, crappy time. 

At this point, all I'm thinking is God bless my neuro for suggesting this.  I will not hesitate to do a short course of steroids in the future when a relapse again rears her ugly head.  I will not tell myself I need to just suck it up, I will not ride it out because there is no need to put myself or my body through that any longer than necessary.

No, these are not for everyone.  Yes, I do believe that many people have had a terrible time on them.  For me though, I am absolutely relieved that not all relapses need to be a long lasting hell.  I am actually going to the grocery store now to buy some real food for my family that I will find the energy to cook.  Sorry kids, no more pizza, McDonald's or Chinese this week.

Talk soon!

Tuesday, April 23, 2013

Another relapse???? FML!

FML...most commonly said by teenagers but entirely fitting to my current state of mind.  If any of my mass amount of readers (59 to be exact) don't know what it means, just google it, I guarantee it's there.

So, If you re-call, I was complaining in my previous post about absolute exhaustion and numbness in my arm again.  I know I was even more tired then usual a few days leading into the weekend and exceptionally irritable.  I say exceptionally because lately I'm often fairly irritable.  Anyways, I heard myself on Sunday night saying out loud "please don't be a relapse, please, please, please don't be a relapse".  I mean for God's sake, I just had one in February.  I started taking Copaxone, I'm eating right, I'm trying really hard to avoid this. 

Yesterday, both arms were numb.  The left from the forearm down, the right from the shoulder down, the right side of my face, my jaw and literally half of my lips.  Accompanied by that darn lightheaded feeling and absolutely, complete, can barely get up off the couch fatigue.  The new thing for me though was this weird band of numbness that wrapped around my ankle.  I've had some numbness in my thighs before but nothing like this.  Then, sure as heck, I woke up this morning to numbness that went up to my knee.  I dragged my butt to work but as the day went on my overall feeling of complete ass progressed.

Yep, this is definitely a relapse.  I called my neuro, he sent me to the ER.  They were going to just send me home as "MS is not life threatening you know and there's really nothing we can do, follow up with your neurologist".  "I'm here because my neurologist sent me"...."oh, well we'll call him then".  Long story short I overhear the conversation where the ER doc admits to my neuro he's done absolutely no exam and no sensory testing of any sort.  I don't know what my neuro said but it was answered with "oh, okay, yes I'll start that, for how many days?  Okay, I'll get her started right away."  To wrap this up without boring you any further, I'm now on my first round of IV steroids.  What the doctor didn't know or bother to ask is that I seem to have a fairly aggressive form of MS that feels the need to relapse as often as possible and always comes with a new symptom accompanied by the perfect blend of ALL of my previously acquired ones.  My neuro is concerned.

So I did one dose today and then get another tomorrow and the day after.  I'm scared of these steroids but I'm much more scared of not being able to walk if this keeps progressing in my legs.  I have been lucky until now that it wasn't affecting them really.

This is not a good day.  I know I have to accept that MS is now a part of my life but I am angry that it needs to remind me of that so often.  Some people have years between relapses and I'm starting to feel like I'm always just waiting for the next one.

I need to attempt to sleep now (hopefully I don't get the insomnia side effect) because I have to do the whole work thing again tomorrow.

My apologies for the not so positive bitch fest today but as I said earlier.... FML

Sunday, April 21, 2013

Today's game plan...results are in

I had a plan.  It was a good plan.  I was pumped. 
So why is my house still not clean you ask?  Next question please....

Okay, here it is.  I showered, I put on 'cleaning' clothes, I put my hair in a messy bun on top of my head that screamed "I mean business".  I came downstairs and began.  I washed my front hall walls, I washed my front door, I mopped the ceramic in the entrance, I vacuumed the stairs at our entrance (only 5 but they're really wide), I vacuumed the main floor, I even actually moved the coffee table and couch instead of vacuum cheating....then....I sat. 

I know that sounds like quite a bit but it's actually about 45 minutes of work.  I was exhausted, I was hot (which is never fun) and my stupid right arm was numb from the elbow down.  My boyfriend said "just sit and relax babe, you're done".  This caused me to glare angrily, jump up and commence cleaning.  I don't know what bugs me more, feeling like a can of smashed buttholes (yes, I really just said that) or feeling defeated.  What really bugs me the most though is other people telling me I can't do something because I'm sick.

He had to leave for his daughter's hockey try-outs though and with him no longer here, I had nothing to prove to anyone...return to sitting.  Continue sitting.  Followed by a little more sitting.  You see where this is going.

Oh well, if anyone comes over they will be seriously impressed with what an immaculate front hall I have, I just hope they don't need the washroom.

Today's game plan

I'm trying something new today. 

This 'fatigue' has reached the point of ridiculous recently.  I get up, shower, feel great.  Go to work, 2 hours in feel good.  4 hours in, feel okay.  8 hours in, feel like a nap would be fantastic, 10 hours in, tired.  Drive home, exhausted.  Collapse on couch sleep for an hour, wake up, cook, drag myself around until everyone is in bed and then fall into a coma until the alarm goes.  Note - NOTHING got cleaned.
My boyfriend does laundry, cleans the kitchen and straightens up so we don't appear to be pigs, however, my house is NOT clean.  This is driving me crazy!
I decided that since my best time of day seems to be first thing after my shower then that is the only time I will get anything done.  I set an alarm (on my day off) for 6:45am, yuck.  I got up, dragged myself downstairs to the coffee pot and have made it to the couch.  I'm working on mustering the motivation to get in the shower and kick start this brilliant plan.
I am going to clean something, anything before the nap monster comes around the corner.  I am going to scrub a toilet or wash a floor or maybe even get something dusted.  This is my plan.
I just have to get off the couch, I just have to finish this coffee, I just have to stop blogging and get in the shower. 
Wish me luck!!!!!!  Dirty I come!

Friday, April 19, 2013

MS Walk - Goal accomplished!

So, in trying to find the 'pull up your socks, suck it up, fix the damn problem and move on' kind of gal' I used to be, I have decided to do something positive.  I will be participating in the MS Walk in my community on May 5th.  Here's why...
Reason 1) The money will go to a very good cause.  It will be used to support research in finding a cure, help to provide mobility aids and assistance to those in need and fund multiple programs and supports.
Reason 2) Any exposure given to this disabling disease will help.  I see very little coverage regarding it and the more people that become involved in these walks and fund raisers, the more awareness it will bring.
Reason 3) I have GOT to excuse myself from this pity party I've been at for the past few months and make the slightest attempt to find the old me...this is something the old me would have done!
I started with a goal of $125.00, then when I hit that, I raised it to $500.  I am now at $642.50 thanks to incredibly supportive co-workers, friends and family.  It's not a lot but with so many others across North America doing the same thing, this WILL help to make a difference.
I said in the beginning that although I may bitch and complain on this blog when I'm having a rough time, I will also post about good things and this is definitely one of them.

Sunday, April 14, 2013

The rules...

Based on all of the research I've been doing on Multiple Sclerosis, these are the rules I've found for slowing disease progression and feeling great. 
No meat, no poultry, no dairy, no saturated fat, limited sugar, limited caffeine, no smoking, exercise at least 5 days a week, take vitamin D plus 22 other supplements and follow a strict and ever so complicated regime of homeopathy. UGHHHHH
Okay, ummmm, what's left?  I can find no dairy but it has saturated fat.  I can find no saturated fat but it has dairy.  I can find no dairy and no saturated fat but dammit, there's too much sugar.  I have created about 6 meals that actually follow these guidelines.  I am now bored of them and very, very hungry.  On the positive side, I've lost 5 pounds.
Granted, I'm new to this.  I know others have adapted to this lifestyle and are incredibly healthy.  I see pics plastered on assorted web pages of 70 year olds with multiple sclerosis doing cartwheels and running marathons.  I, however, am really missing steak. 
Now, caffeine, this was a biggie for me.  I used to drink, well, probably 6-8 coffees a day.  There is a Starbucks in my workplace.  I get up at 4am, I work 10-12 hours and commute for about 2 more on top of that.  I survived on tall lattes.  I am proud to say I now have 2 soy lattes per day and sometimes a black coffee.  I know, I know, 3 a day is still way too much but I'm trying okay?
Exercise, okay.  This one I want to do.  This one I miss.  This one I loved.  Problem is, the weights I used to lift seemed to have doubled in heaviness.  I get hot and then get sick, really sick.  I get so....damn...tired.  I am trying to do Yoga again, it's not as hot or heavy.  The only problem with this one is that I have the balance of someone with a blood alcohol volume that's WAY over the limit.  Yoga now makes me giggle at myself.  I guess that's not so bad though.
Supplements and homeopathy.  These are a blog all their own.  I am not ready to post on these yet because I don't fully understand them and have seen the hellfire rage that is thrown on-line towards those who make the mistake of posting any untrue, mis-educated or non-factual statement regarding either of these subjects.  So for now, I'll hold off on this one.
Note - I did not mention smoking....I have my reasons.
So, that's all I have to ramble about today.  I would be really happy to hear from anyone who has a great recipe idea that falls into the above mentioned rules or any other advice they may have to help me find some kind of fun in all of this.

I have to go now - I have a delicious vegie dog straight off the bbq and some soy crisps to eat...YUM!!!

Thursday, April 11, 2013

At least I'm not crazy

January 11th, 2013.  The day I learned I wasn't crazy.  That's what I had pretty much decided I was.  That or a hypochondriac. "You have anxiety, you have migraines, you have nothing wrong with you."  This is what the first neuro told me.  In fact, her opening sentence to me on our first visit was "you don't have MS".  At that point I hadn't even thought I might, but boy was it good to know I definitely did not have that.
I had blood work upon blood work, I had ultrasounds on my heart and neck.  I wore monitors with sticky pads all over my chest for 2 days.  I was seriously tested.  I was healthy, I was crazy.  The right side of my face was not really numb, my right arm was not really numb, I was not dizzy almost all the time and my body absolutely did not feel like it weighed 500 lbs.  I was fine.  Oh, and the 14 lesions that were on my MRI?  "They're just have migraines.  See your doctor for anxiety meds".  Okay.
Fast forward a year and a half.  Fast forward past 4 relapses and 2 trips to emergency as I thought I must be having a stroke or hit a new level of crazy.  New MRI, 2 new lesions and holy crap, a positive lumbar puncture.  Congrats...I am the proud owner of MS.  But hey, at least I'm not crazy, right?
Anyway, here I am.  I hear over and over that lot's of people have this, lot's of people live long, happy, healthy lives with this.  Lot's of people don't even think about the fact they have MS.  I know this, I believe this and someday, I'm sure I'll accept this.  Right now though....I'm just pissed off.
I used to weight train, I used to do yoga, I used to jog.  That was on top of working 60 hours a week, raising three boys and keeping up with cooking, cleaning and a 2 hour per day commute.  Now, I work, nap and sleep.  That's all I've got. 
I miss me, I miss energy, I miss 2 years ago.
I assure you, this blog will not be like this all the time.  I'm certain I will bitch and complain here and there but I'll do my best to keep it to a minimum. 
More than anything, I just want to hear from others who are going through this.  People who are newly diagnosed, people who have been for a while but remember what it was like when it was new and even people who want to tell me to quit whining and move on. 
Talk again soon....