Sunday, June 14, 2015

Almost 2 years later...(and 1 comment??)

Well, I just came across my old blog.  Yep, this one right here.  I started this shortly after my diagnosis when things were, well, crap.  I am, however, glad to say, that in the past two years, there is less 'crap'.  A lot less crap actually. 

I just read through all 20 of the posts I wrote before I gave up 'blogging'.  What was shocking to me though is that there was finally one, yes one, comment.  20 posts I'd written hoping upon hope that someone, anyone, might see them and say something and I wouldn't feel so alone.  They didn't though and I gave up.  Then, in February,2014, someone did...and I just saw it now :)  (better late then never) Thank you Andrea!

A lot can happen in 2 years...I don't even know where to start.  I stopped yelling so much and found a way to stop feeling so sorry for myself.  I save that only for really good relapses now, during those I have a really good cry and curse the entire world.  When all is good, I will spend the better part of an evening now and then convincing my husband, yes, the boyfriend is now a husband, that I was "misdiagnosed, I feel great and NOTHING is wrong with me!".  He just smiles back and waits.

So, yeah, that happened.  I got married.  We went through a lot, I told him to run "get out now while you still can", he said no, did the opposite and proposed.  October 4th of 2014 I married the strongest, most dedicated, understanding, patient and quite frankly insane man I have ever known.  Why anyone would commit themselves to God only knows what the future holds for me and what the bad times can get like around here, I have no idea...but I do know, I am one lucky lady :)

I have less relapses now too, so I guess the Copaxone is helping.  I had 9 in my first year and now I just had one in March and the one before that was last July.  So, positive note, way less relapses.  Negative note, they are brutal.  My last one lasted 7 weeks and the one in July lasted about 10.  Both times I get the gift of a lovely left leg limp.  I don't really have pain, it just stops working right.  I can't even explain it to my neuro really, it just doesn't want to go the way it's supposed to.  It feels like my hip isn't talking to my thigh right and my thigh isn't talking to my ankle but they're all trying, just out of sinc.  Regardless, I'm still mobile to a point with them.  I just look "off"...and slow.

Along with the leg, each relapse still brings with it an accumulation of all past symptoms and they suck but they go away and I now, move the hell on.

I'm still permanently tired, but so is everyone with MS, so whatever.  I'm super clumsy but I always was a bit clumsy should see me after a few drinks....hilarious!!!  I forget a lot but have learned to make lists and then the next day I rewrite what isn't crossed off the day before list and add to it.  It works....shit gets done.

I still work crazy hours but go to bed super early (which helps).  I try to eat the right things.  I have gained weight since my last relapse because I can't really exercise yet but I will be starting back at it tomorrow...I promised myself that this week.

Overall, things are changing, for the better.  I'm not so bitter anymore and that is a good feeling.

What I'm trying to say is, no, I'm not all better but I'm a lot better at this.  MS is not my every minute of every day now.  I have a life, I have MS.  You can have both.

So, now this blog will become about my journey.  Tomorrow is a new day and I will challenge myself to be even healthier, stronger and better.

Talk soon!

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.