Wednesday, August 21, 2013

Okay, starting to worry now...

So, last posting was a true relapse.  Yep, another one.  That's one in February, one in April, one in June and another one in August.  They last a couple of weeks only (thank God), give me about a 5-6 week break and BAM...hit me with another.  I have called my neuro and left a message for each one just as I was told to.  I had IV steroids for the one in April, rode out the next one (by my choice), waited until the end to call on my latest.  This time the office called right back to inform me that my neuro wanted to see me the next day at noon.
Now, my neuro requires a pre-book for appointments of about 3 months.  You just can't get anything sooner.  This being the next day and at noon told me that not only was this obviously squeezed in on his lunch but also more serious than I realized.
When I got there we went over my last 3 relapses to try to decide if they were all true ones.  He said he was very concerned because I am continuing to not only have too many but they are actually getting even more frequent.  I am on Copaxone and have been for about 5 1/2 months.
He did his regular poking and prodding.  Babinski thingy is there on my left foot, right foot is not responsive either way.  Told me to jump on one foot.  I had to grab the wall and got like NO height.  This surprised even me because I used to be super athletic and had no idea I couldn't do this.  Really, who jumps up and down on one foot for no reason?  Then he checked this thing where I lie on my back and put my legs straight up in the air.  My feet slowly crossed over each other.  I thought nothing of it, he asked me to try not to cross them.  I uncrossed them and watched them all on their own go back to crossed....weird thing to see by the way when you don't intentionally decide to do it.  Apparently this isn't such a great thing either based on his face and note taking.
He said he thinks it would be wise to see an MS specialist at this point.  He said that I might need to consider Tysabri or Gilenya?  I don't know much about these but he said they both are a bit scary and really last resort.  One has a 1 in 10,000 chance of triggering a brain infection that is usually fatal and one requires monitoring after your initial dose because your heart could stop.  Neither sound like a great plan to me at all.  I asked about the other DMT drugs and he said that the interferon based ones have the same results as copaxone for slowing progression and relapse rate and he doesn't believe they would be any more effective in my case.
Final decision was to do another MRI of both my spine and brain using some kind of die to see just what is going on.  Then, as he said, if there is no progression we can take a deep breath and relax...continue on Copaxone (which can take 6-9 months to reach full effectiveness) or if there is then it's off to the specialist armed with these to look at the option of the above mentioned "scary" ones.
This is all happening so fast.  When I was diagnosed I researched and researched and the only good thing seemed to be that this was a disease that usually had slow progression.  I thought I had like 10-15 years on Copaxone with reduced relapses before I would be looking at these kinds of options.
So now the wait begins.  MRI is not until October 3.  If my body stays on it's current schedule I should get until about mid to late September relapse free....can't wait.

Monday, August 5, 2013

Is this a relapse or not?

I find it hard to know if something is a true relapse or just another strange blip in this unpredictable disease.  I often can tell one's coming because without any specific symptoms, I generally feel crappy.  I feel more lightheaded than normal, more tired than normal, crankier than normal (if that's even possible lately).

I'm pretty new to this thing though and still never know for sure.  I'm supposed to call my neuro with every relapse so he can track my 'disease progress' but I don't want to call for stupid things or no reason.  I don't want to be that annoying patient.

So for the last 2 weeks I have been trying to decide exactly what the hell is going on.  I have a new least I think it's a symptom.  I have had painful goosebumps from the knee down to my ankle in my right leg only.  They come and go every few minutes and they hurt!  Along with that I had about 3 days straight of this electric crawling again from the knee down in the same leg that just made me want to rip my own leg off.  I also had the lovely return of the tightness around my shoulders and throat and my right arm full of pins and needles off and on.  I guess this is a relapse?

From what I understand, a relapse is something that occurs and lasts for at least 24 hours.  They have to be at least 4 weeks apart.  They do not always incorporate a new symptom, they may ONLY be a new symptom, or they may be a blend of many existing symptoms and additionally a new one.  It had only been 5 weeks since my last one finished when this began.

I guess it does sound like a relapse...but goosebumps?  Really?  I've never had them in only one part of my body, I've never had them when I'm not cold or emotional, so I guess it could have to do with my broken brain. 

Does anyone else have relapses this often?  I guess I should be thankful that they only last for a couple of weeks but I'm really scared by how often they seem to be coming now...if that's what these are.

Fingers crossed I'm just crazy because more relapses would mean more lesions and that's only the ones I would know about.  From what I've researched, you can develop new lesions in more 'silent' parts of your brain and not even be aware it's happened.  That makes me seriously concerned about what they may find on my next MRI, whenever that will be.

Well, I see my neuro at the end of the month so I guess I just wait until then.

I don't think there is actually anyone out there reading these posts, but on the off chance there is...

Talk soon

Saturday, July 13, 2013

Why do I yell?

Tonight was awful.  I lost my shit completely and now I'm sitting here, once again, wondering what the hell is wrong with me.

This is how it went.  10 year old spills milk, step-dad pulls paper towel out of my hand as if I'm too stupid to clean it up and goes to do it.  This pisses me off and I make a comment.  He says "I'm just being a parent".  I respond "I was fully capable and you just took it".  Mood change instantly.  10 year old makes smart ass comment to step-dad.  Step dad yells at 10 year old for talking rudely.  Not just one sentence though.  He goes at him about respect until tears form.  I believe this attack is because I pissed off step dad.  I jump in and tell him to back off...enough.  He says "yeah? you try dealing with him all day", enter my smart ass comment "I would but I'm busy working all day to pay the bills around here".  Full out fight now. 

Remember, this is at the dinner table, with 3 kids.  THIS is NOT who we are.  THIS is NOT our family.  At least it didn't used to be.  I call him a 200 lb. 6 foot 2 bully.  He leaves the room mumbling about my newfound level of crazy.  I continue to call him a jerk from the kitchen. 

Then it hits, and hard.  The 10 year old points out that 13 year old step-daughter is crying.  Reality check big time.  I go to her and say I'm so sorry.  I'm so sorry I yelled like that.  It's too late though.  It's now a memory.  A terrible memory I made for her.  I'm sure all she wants right now is her mom.  Not her crazy ass step mom.

So I ask again, what's wrong with me????  When did I become this person.  This monster that screams at the dinner table?  When did my spouse become so angry.....he never yells, like NEVER.

I just don't know what to do anymore.  The tension in this household is through the roof and it seems like me and my partner don't even like each other lately.  I'm not basing that on this one spat.  It's been weeks of nasty under breath comments and quick snapping about silly things.

I want to stop being this person.  I want to say I'll never yell again.  I'll handle this better.  I don't even believe myself though, so how could I expect them to?  I will do everything I can though to be damn sure I never let myself make them cry again.  I never want my children or step-children to be scared or sad with their own parents.

Wow, things are so messed up.  So terribly messed up. 

I only write this here because I don't know any one who reads this and if judgement is passed on me than so be it.  I needed to vent though, I had to get this out because I feel like I'm falling apart.  I try so hard to be positive, to be hopeful, to be happy.  I can't make it real though lately. 

I think all of this change is just too hard for the family.  I'm sure tomorrow will be better, I know it will.  Tonight though, is bad.

Saturday, July 6, 2013

Taking care of others is good medicine

My mom had minor surgery this week.  I spent the last 4 days staying with her and helping.  I didn't think about myself really at all.  I didn't feel sorry for myself, or angry about MS.  I didn't give in to the nap monster even when I really would have loved to.  I cooked, I cleaned, I ran errands.  It was lovely.  I know, most people would probably bitch about those kind of days but I'm elated that I felt useful again for once.

Don't get me wrong.  I'm pooped.  I'm absolutely done now.  I have officially passed the buck onto other family members and found my way home but I feel great!

When you are in position where someone else absolutely needs you it seems that your body is almost capable of forgetting it's not feeling that hot for just a little while.  It let's you do what has to be done.  When I'm home,  I can decide to leave the dishes for a while, or skip making the bed today.  I can choose to lie down for an hour (provided the kids are at school/camp/work etc;).  I can let myself be exhausted.  

Well enough of that garbage.  I have just proven to myself that I can still do it.  I can keep going provided I remember to give in when it becomes absolutely necessary.  I refuse to accept that I'm just 'sick' now and throw in the towel, because, quite frankly, I don't have to.

From now on I'm going to try a lot harder to be who I used to be, starting with being a full fledged mom.  I will find my way back.  I know that when my next ugly relapse strikes my body will not agree with my plan and I can accept that.  In between though, it's time to start living.

Monday, June 24, 2013

A proud moment

Today I heard from someone from my past.  Someone who wanted to talk about things in the past.  Things I don't want to re-visit.  Someone who hurt me terribly.  I immediately felt all of the sadness and anger, worry and drama creeping in. 

Today, I did something different.  For once, I said no.  I used to fight back, allow the problems in, worry about the most irrelevant stuff and allow myself to become an emotional basket case.  Today, I took care of me.

I wrote back immediately.  I stated that I needed to not have these conversations any longer.  I told them they had done so much wrong but that it was no longer a part of my life.  I asked them to please allow me to let it go.  I explained how with my health the way it is now I have to change.  I explained that I cannot afford to focus on such negative memories.  I stated that for the first time in my life, I was learning to put myself first. 

As I typed those words, it hit me.  I meant it.  I've never in my entire life allowed myself to put my feelings ahead of someone else's.  I have always worried about how they would feel, how this or that would affect them and would base all of my decisions and actions on that.  I often would allow myself to be miserable to ensure that someone else wouldn't need to be.  I have changed and for that, I am so proud of myself.

It's okay to care about me.  It's okay to say this isn't healthy for me.  It's okay to say enough is enough.  If someone truly cares about you, they will hear you and accept your feelings.

Don't get me wrong, this doesn't mean I don't care about others, nor does it mean it's all about me now.  It just means I am finally learning to draw the line.  I am learning that in order to be as healthy as I can be I need to put myself first because only then will I have enough in me to show the people I love so much how I feel.

MS is not a blessing, it is not a gift.  It is teaching me though, slowly, to really decide what is important and what is not.

As small as it sounds, this person's contact was a very good thing.  It forced me to stand up for myself in a way I never have.  It forced me to change, instantly, just by typing an e-mail.  I feel so good right now.  I feel so proud.

Talk soon

Tuesday, June 18, 2013

I'm sooooo confused

I have researched and researched MS on the internet.  I think I've read every site there is as well as more blogs than I ever thought existed.  The only consistent thing I find is that there is currently no 'available cure'.  Even as far as what kind of disease it is there seems to be arguments.  Is it an auto-immune disease or is it inflammatory?  Maybe it's related to a vascular issue....who knows?  Really it's irrelevant for me right now as even if there is a cure, it's not something I can access.  I just want to figure out the 'right' way to minimize and delay this.

This is where the real confusion begins.  I have bought and read the MS Diet by Dr. Swank.  It basically had me eliminate dairy and saturated fats.  Which was actually a shocking amount of foods.  Overall, this lifestyle change would probably be healthy for anyone.  A naturopath I saw put me on an elimination diet which basically ended up in eliminating everything but rice at which point she triumphantly announced "that's it, you're allergic to rice!).  Nice, no more money for you lady!  I'm starving!!!!!

Other people have suggested the paleo diet for those with MS.  Similar to the Swank diet, slightly less restricting...much more expensive....lot's of organic/grass fed products.  Overall, one consistency is saturated fats in high quantities...primarily vegetable oils.  Okay, done.

I get that diet is linked, the reality is however, that I just don't have the willpower to give up everything I enjoy.  I like steak sometimes, I don't like paying $25 dollars for a teeny tiny one because it's grass fed.  Once in a blue moon I feel like yogurt....not soy based (I tried it, it's gross).  To top it off my favourite food in the entire whole wide world is Chicken parmigiana.  Where do I start, bread crumbs/oil/mozzarella cheese.....delicious....not okay on any of the above mentioned plans.

Next problem.  DMDs (disease modifying drugs).  My neuro was pretty damn insistent that I start these.  He felt it was absolutely necessary at this point.  My naturopath (at the time) felt the exact opposite - then again, my only problem was a rice allergy.  Doctors apparently get a kick back for getting new patients to start these drugs from the companies that produce them so they have a great incentive to recommend them.  People say they are loaded with carcinogens and lots of stuff that will make you even sicker over time.  The drug companies say they will reduce your relapses by up to 33%.  To me it's kind of like an anti-aging cream.  You use it faithfully your whole life to help you not look so old.  You have absolutely no way of knowing what you would have looked like if you hadn't used it, so you are left to just keep forking out loads of money in good faith that they are doing something.  How many relapses would I have had if I wasn't injecting daily????? Who knows for sure.

Exercise.  People with MS should exercise regularly.  They should not exercise to the point of exhaustion, over heating or push limits as this could trigger a pseudo-exasperation or worse, trigger a true relapse.  I used to weight train.  The only thing I know is to push my limits, sweat like a dog, yell, curse and be sick from it all at the end.  That was exercise and it was awesome!!!  I did a yoga workout a few weeks ago thinking that would be okay.  I guess I shouldn't have done the intermediate/advanced because I sweat a little and sure as shit started a full out relapse a few days later.  I'm not sure if they were related or coincidence so now I'm petrified to try again.  The only thing left is stretching.  BORING.

Ughhhh.  I know I sound super negative here.  I know that I have dissected every single good idea I've come across.  It just seems though that for every good idea there is another study or person explaining why it's a load of crap.

As I said....soooooo confused.

Tuesday, June 11, 2013

Hey you!!

Hi there, yeah you, the one reading this entry.  I know that over 250 people have popped in and glanced at one or two things I've posted.  Probably 90% of you ended up here completely by accident and hit the big old back button on your browser immediately.  I do, however, think that at least a couple of people actually read through it.

So this is for those people.  I am asking you to leave a comment.  If you have anything to share at all that you think might help even the slightest, I'm all ears.  I'm still looking for recipe ideas, thoughts on copaxone, advice about exercise and even a little advice on what to do when I'm feeling really down and alone with all of this, which I am right now.

Just knowing someone, somewhere, gets it...well, that would be great to hear.

Thank for taking the time, it means more than you know,
Talk soon

Sunday, June 9, 2013

Is copaxone making me worse?

I know that it can take 6 months or more for your body to begin to respond to Copaxone.  I know that it isn't going to make me better and that the best case scenario is that it will reduce my relapses by 33%.  What I didn't expect though, was to get worse.

I started injecting daily at the beginning of March.  I had a relapse in April and am now deep into yet another one.  When I started not feeling well 2 years ago I would be "off" for a couple of weeks and then almost normal for maybe 3 months.  My doctor said I was having more relapses than average.  He said I needed to start a DMD right away.  What I don't completely understand is what this means.  I went into a pretty bad relapse in February, started Copaxone, and then had 2 more only 5 weeks apart.  It seems like since this all started I'm just getting worse and worse and since starting the drugs they are barely separated by the mandatory month in between.

What does it mean if my relapses are coming more and more often.  They seem to include a new symptom with each one too, which is also very frightening.  I read that it is normal, on average, to have 1 relapse per year,  at this rate I could have about 9 this year alone.  Does this mean I am going to get worse quickly?  Does this mean I will probably lose more mobility sooner than average?  Does this mean I will transition to secondary anytime? 

I look for answers to this but they are vague.  What I have read is that every disease course is different for everyone so there's no clear way to know.  I have seen studies that show that the more relapses you have in the first 2 years after diagnosis the sooner you will have more advanced disability but then it always follows with 'this is not the case for everyone'.

I want another MRI, the last one on my brain was last August.  At that point it showed one new lesion since 6 months before that (I have over 14 total).  I had a spinal MRI in November which showed a couple of lesions there as well.  With having had 5 relapses since last August I wonder how many new lesions are there?  Apparently you can develop lesions even without a marked attack so it could be a lot.  Would this add to atrophy?  He already said that was measurable in me and was another reason to start DMD sooner than later.

As I type this I see that I already know half the answers here.  I know it's not great news that I'm having so many relapses.  I know that I won't know how this is going to progress until it actually happens.  What I don't know is if starting these drugs has actually triggered something that is making things even worse?  Does anyone know if this is possible?  I would really appreciate any comments or feedback from people who are taking or have taken Copaxone on this one.

Talk soon

Friday, May 31, 2013

I'm just too tired

I'm so tired, just exhausted.  I have nothing left.  This is fatigue?  'Fatigue' sounds not so bad, not so doesn't seem like the right word to describe this.  I feel like I could just lie down forever and ever.  I cleaned half of one of our bathrooms and my right arm instantly weighed 3 times more than before I started.  I walked upstairs to get something and my thighs literally burned as if I had just spent 20 minutes running on the treadmill.  I opened the fridge to figure out dinner, stared at it for a minute, shut the door and sat down. 

I have the slightest hint of energy mid morning and unfortunately work gets all of that.  I make all kinds of plans and commitments inside my head that I will do after work.  They just never happen.  Hardly anything gets done anymore and if it does, I'm completely finished for the rest of the day.

This just gets worse and worse.  I'm not having a relapse, so is this just me now?  Is this my new normal?  Does this get better ever again????

I hope so because the level of guilt that is coming with this ability to do nothing is almost unbearable.  I'm letting everyone down.  My family and friends deserve better than this 'me'.  I deserve better than this 'me'.

UPDATE:  I was starting a new relapse, just didn't realize it.  Thank God this was not my new norm....back to just normal fatigue for me.

Thursday, May 23, 2013

Paperwork, paperwork, paperwork (and a nice dose of disclosure)

Through my employer I am entitled to a critical illness benefit.  There is a handful of diseases that this benefit applies to and this is one of them.  I'm not sure how I feel about that to be honest.  I mean, this being on the list of diseases that suck so bad you deserve a payout just adds to the reality that this is not a small thing.

It is a descent lump sum payment.  It is meant to be there for me when I need to purchase assistive devices, have modifications made to my home, need a caregiver or can't work for a while.  Again, all scary thoughts for me.  I suppose I should feel fortunate to have this kind of insurance as I'm sure there are many who don't.

I have to apply for this now because you have a limited time from diagnosis to apply or you cannot receive the benefit, I believe it's 12 months.  This meant I had to tell my employer.  I had been hoping to put this off for quite a while longer.  If I wait though, I'm out of luck.  It seems silly to me that with a critical illness that isn't going anywhere they put such a short claim allowance period (I guess it gets them out of quite a few payouts). 

I contacted my HR department and they said that they could not initiate the claim without disclosure of the reason for it, I had been hoping I would be able to deal with the insurance company directly.  Follow this call with a very personal and terrifying conversation with my regional director (boss) and the process has begun.  Another very big life change.  I have worked hard to reach where I am and I had planned to continue to climb within the company.  I can't help but worry about how this has likely changed senior leaderships ideas of my future growth with them.

Anyhow, what's done is done.  So onto the paperwork!  HOLY PAPERWORK.  I received two separate sets of claim forms.  The first twelve pages long and the second eight.  I have to have my GP fill out four of these pages, the rest are special just for me.  The questions request incredible detail and specifics.  Now, please bare in mind, I can't remember who I just spoke to on the phone five minutes ago half the time, yet I'm supposed to know the 'exact' date of which my symptoms began.  How in God's name would someone with MS know the first day their symptoms began?  Ummm, could have been when the pleasant bouts of irregularity started 6 years ago, could have been when I felt so tired I was sure I had mono 4 years ago, could have been when I started tripping up escalators and missing steps which has been on and off for years.  I don't have the slightest clue on what exact date this started, so I've decided to go with when I started getting dizzy in 2011 and just copy my doctors work.  Honestly, the people who generate these forms must not know much about MS.

Then, they want copies of all relevant tests and results.  They want dates that you have visited the emergency room and what doctor treated you there.  They want your date of diagnosis.  They want to know what feels like a gazillion pages of everything, which would be just fine with me if I could only remember all the answers.

Oh well, like I mentioned earlier, I'm going to copy my doctor's homework as much as I can.  I have had them print out two years of my medical files and tests so I can sift through them for answers and I've left a request with the hospital for any documents they may have.  I do believe this is going to take a while.

Hopefully I get it done by my deadline next January, LOL.

Talk soon

Saturday, May 18, 2013

Apparently anything goes

All kinds of funky things are happening recently.  Not the kind of things that throw me into relapse panic (it hasn't been a full month since my last), just funky things.  It seems lately like every odd, quirky, interesting, "well that was strange", thing that happens to me boils down to MS.

It never ceases to amaze me how this disease can affect every part of my body, yet the only thing actually wrong with me (test wise) is my brain... and a bit of my spine.  I always figured if my arm hurts, something's wrong with my arm.  If my sight is blurred, something is wrong with my eye.  You get the point.  Apparently, that is no longer the case at all.

New strange stuff...

I have this spot on the side of my upper right thigh that gets hot.  Really, really, hot!  Not to the touch though (I had my boyfriend feel it) but it is definitely freakin' hot!  It last a short time and goes away.  This started a few days ago and happens quite a bit in a day.

I heard, yes, heard, a vibration in my right ear.  It got louder and louder and louder to the point that I did enter the realm of panic.  I could do nothing for the few minutes it lasted.  Then, it just stopped.  Just like that.  Weird.

Restless legs.  Okay, these are driving me absolutely bat shit.  When I'm driving I have to kick off the shoe that is on the leg I'm not using and actually kick that leg constantly and at one point even had it crossed over the one that was trying to operate a vehicle.  The one driving just had to suck it up so I didn't kill anyone.  I have a 2 hour commute most days and this has become hell.  Sitting on a couch can only happen for 20 minutes or so max before I go bonkers trying to ignore the crawling feeling shooting up and down both legs and have to jump up and walk it off. 

And finally, my absolute favourite...I have spiders crawling on my forehead.  I'm serious here.  Okay, no, there aren't really spiders.  Man, I'm telling you though, I swear they're there sometimes.  I'm watching tv, minding my own business and along they come.  They crawl out from my hairline and down onto my forehead and then start to party.  I jump, brush the imaginary buggers away, and back they come.  Please someone explain this one to me.

The thing that get's me about all these things is they are all related to MS.  I even googled sensation of spiders on skin and low and behold, there it was, commonly experienced by people with MS.  Get out of here!!!!  The ear thing, apparently not so common, but it's got to do with a muscle spasing out by my ear drum and "sometimes experienced by those suffering from multiple sclerosis".  Hot spots...MS.  Restless legs...MS.

I try not to look up too much info anymore on this disease because I have had enough with scaring myself but I do look up what I experience.  I do this because I need to know I haven't lost all my marbles...yet.  I am still shocked every time to find out that, yes, that applies to MS.

I guess it makes sense, if you have a disease that messes up how your brain sends messages to your body then it really could make it feel anything.  I read where one woman said it felt like someone was tearing off her toenails.  Her neuro said she just had to remember that they "weren't really".  Comforting? Not really.  I hope no one tears off my toenails anytime soon, I'd rather deal with the spiders.

Wednesday, May 8, 2013

Is it me?

Is it me?  Is it him?  Is it the MS?

Who the hell knows.  I lay in bed last night with tears choking at the back of my throat.  I had rubbed his back and told him I loved him, he mumbled something back and started snoring.  All of a sudden, I felt alone.  Like, really alone.  Alone in the bed, the house, my life, this god damn disease.  Where did this all come from?

I keep getting up every day and putting a smile on and pushing through.  I tell pretty much everyone I'm fine.  I tell myself I'm fine.  I'm not fine.  I'm sad.  Supposedly a symptom of this crap is depression.  So, the question I guess is, am I really sad or is it just another lesion?  Just another part of this?  Is he really being more distant or am I being more sensitive?  Are the kids really being a lot more difficult or do I have a lot less patience.  More than likely, it's me.

It doesn't feel that way though.  No matter how I analyze it.  No matter how much I tell myself, I'm the one who has changed, I still feel very alone.  I don't have the energy to hang out with my friends, so they call less.  I don't have the energy to be intimate with my boyfriend, so he's pretty much given up.  I don't have the energy to do much with my kids, so they barely talk to me.  I'm really screwing things up lately.

I have got to find some way out of this hole I'm digging.  I have got to find a way to actually feel like I'm pretending to all the time because this pretending thing is getting exhausting in itself.  I'm worried about my next relapse, I'm worried about not being able to walk, I'm worried about everyone finding out I have this, I'm worried about our future financially.... hell, I'm worried about everything.

I feel guilty because my house isn't as clean as it usually is.  I feel guilty because my own children are avoiding me.  I feel guilty because I nap too often.  I feel guilty because there are people with MS who have it far worse than me at the moment, so who the hell am I to complain.  I feel guilty because I don't want to talk on the phone with people.  I feel guilty because every time someone bitches to me about something in their life, I quietly think, "suck it up, you don't know problems", while listening and giving them advice.  I feel guilty because I am nowhere close to the girlfriend I used to be, I am no fun at all.

My God, do I ever sound pathetic. 

Seriously, where did I go?  If anyone sees the old me around, please let me know, I'd really like her back.

Friday, May 3, 2013

Clearing customs just got a lot more interesting

This week was my first business trip with my new travel companion...Copaxone.  Bringing these syringes with you on a plane requires some pre-work.  First, you need a letter from your doctor stating you must travel with this drug, second, you need a prescription label from the pharmacy, third, you need to have the card on the travel case also signed by your doctor and filled out with pharmacy info.  If you have all of this, things will be a breeze right? Wrong.

Flying out of Canada into the states went seamlessly.  I presented the medication, explained why I had it, let them inspect it, provided the letter, went through the metal detector and moved on to my gate.  Flying out of the states back to Canada was a whole different ball game.

First, you have to stand in a completely separate line.  The one that's marked for families, liquids, wheelchairs and medications.  My co-workers do not know yet that I have MS nor do I want to share it, so this required some interesting excuses and downright avoidance as I separated from the pack.  Then, I wait in the longest line ever.  I wait, and wait, and wait.  I start getting the BBM's.  "where are you?", "have you been arrested? :p", "LMAO, what the hell are you doing?".  I let them know they are hilarious and they could go ahead to our gate, already creating the excuses (lies) I would feel the need to make up for the line, delay, etc.

My turn.  I take off my shoes, take off my sweater, take out my laptop, phones, meds.  Place everything in the bins minus the copaxone (it's not supposed to go through the x-ray apparently).  I hand the copaxone to the customs officer.  Let the fun begin!  I get to go through the super cool body scanner first, I pass.  Then I wait while they analyze the one syringe I have left.  They put it in something that literally makes a rooster sound.  I'm not kidding.  Apparently this means I AM OFFICIALLY A THREAT TO HOMELAND SECURITY!  Now I am important enough for 3 customs officials.  The one tells me my medication has 'alarmed' and they will need to check everything. 

This is when I see my worst nightmare.  One co-worker, who thought he was being the only nice one, waiting for me 20 feet away, watching everything.  CRAP!!!!

They take me to the side.  I have a choice, I can be patted down here or taken to a separate room.  "Let's just do this", I say, I am NOT having this guy wondering what's happening as I'm escorted away.  I am groped and patted almost everywhere by a female officer while standing, get this, "arms out like an airplane".  This is for sure a new pic on my co-workers I-phone.  My laptop is swabbed, my phones are swabbed and my shoes are swabbed.  Then I am swabbed.  "Clear, clear, clear, clear".  They finally give me my shoes back, thank God, because I was barefoot on an airport floor, ewwww.  Then I have to re-pack everything I had strategically originally packed in my carry on, which was more than it could handle in the first place.  This, by the way, is a lot harder then you think when your hands are shaking uncontrollably and your brain has temporarily frozen. 

When all was said and done, they thought that would be the appropriate time to ask why I need this medication.  I answered "because I have MS".  Hearing myself say those words, going through the embarrassment of this screening and realizing that I was eventually going to have to tell someone at work, was a burning reminder that this is true.  This is my life now.  Not one day seems to go by anymore that I don't have to accept that everything....everything has changed.  Everything, has gotten harder.

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....