Where do we get our strength?

I came across this quote from one of the many MS blogs I read and wanted to share this little line with my followers:

"One of the greatest paradoxes of dealing with MS: it's a disease one of whose hallmark symptoms is weakness, yet it demands the utmost strength from those dealing with it." - Wheelchair Kamikaze

Just a little food for thought.

H.xo

Sugar & Spice & things that AREN'T all that nice...

This is a heads up to the men out there reading my blog... this post is about the trials and tribulations of being a woman.  Proceed with caution!

So I just finished my first full week back to work after 103 days off.  Boy was I unprepared for that 7am alarm to go off!  The good part is that I'm only working 4 hours days to start.  As I explained earlier, my doctor came up with a gradual back to work plan for me.  4 hours for weeks 1&2, 6 hours for weeks 3&4, 8 hours for weeks 5&6, and then back to my regular 8.47 hour shifts and back to my normal position.  For the next 6 weeks, I'm working a "non-operational" position (which basically means that I'm not controlling).  I'm working at a desk, imputing numbers & figures into Microsoft Excel, to help out my manager. It's the kind of work that turns your brain to mush, really. It's nice, easy work to be assigned during the holidays because I'm not on a deadline and no one really checks in on me. I doubt my manager even expects me to finish this project.  Any little bit I can plug into Excel is just a little less work that she has to do herself.  She'll probably triple check all my work anyway since I don't even know how to use the damn program!

So I finally noticed something very interesting this week. A trend one might say. I try to keep a journal of how I'm feeling from one day to the next, recording when symptoms appear or disappear. Anyway, when I was looking back over my notes, I noticed a particular trend every 28 days. Being a female, you'll know what I'm referring to. I've noticed that the week before and the week of, that my symptoms are definitely reappearing (like I need something else to irritate me during this week, right?!). This is mostly in the form of achey limbs. It's mainly in my legs and sooo unbearable. It keeps me awake at night in so much agony that I have to get Sheldon to help rub them down. Like I said, I've only noticed this throughout the past 3 months and I've been paying attention ever since. It's been ongoing again these last 10 days but oddly enough the aches are in my arm and hand this time. Always the left side. God, MS is so weird. Will I ever figure this monster out?!

Anyway, for those men who braved my post, if nothing else and if you've done your calculations right, you now know which days of the month to avoid me or stay on my good side and not piss me off - haha!

Right on.

 H. xo

Mojito's, Roomies, Drugs, & Work

Not the good drugs you're all thinking of, unfortunately... but the Cuban mojito's were to die for!  Sheldon and I had a fantastically relaxing time in Cuba - just what we both needed to refresh our systems and our relationship.  For me it was a final breath of fresh air before re-entering the working world, and for him it was a long-overdo breather after 4 long years of training, and of course a celebration of his new job. It was also a romantic early Christmas gift for the both of us :)

Since I've been off work (and when I've been feeling up to it), I've been using my time to do some serious house hunting.  I was hoping to be in a new place before December, since my mortgage was up for renewal anyway and Sheldon's lease at his apartment was up as well.  Unfortunately we didn't find a place in time, but we decided to take that big relationship leap anyway and live together in my condo for now (!!!)  So not only does he get to cook for me all the time now, but he's lucky enough that I let him give me massages daily as well - haha!

Right now it's a Sunday evening and I've been summoned back to work tomorrow morning at 9am.  As I explained before, my doctor and my employers have come up with a "gradual" back to work plan for me.  I'll know more about it tomorrow morning once I meet with my managers, but I think it'll entail a part-time office position for the first few weeks, then a Monday-Friday 9-5 thing until I feel ready to start shift work again.  I doubt I'll be back to controlling airplanes until the new year.  The company and union have been so good to me throughout this whole ordeal... I'll do whatever job makes them happiest.

To be completely honest, I'm very overwhelmed to be going back to work. I've actually been having panic attacks at the thought of it. Ideally, I'd go straight back into controlling since that's where I feel most comfortable, but the shift work is going to be really hard to get back into.  I thought I liked the erratic shifts, as I could basically mold my work schedule around anything I had going on in my social life, either day or night, but having 3 solid months off have definitely opened my eyes to the invisible damage it does to your mind, body & soul.  Having MS, a disease that comes and goes as it pleases, I'm scared every day that I'll wake up and things will be bad again.  Being off has taken a little of that stress away, since I have no where to be, no one to report to, and no one depending on me.  Since I've used up all my sick and vacation days now, until I get new stuff on April 1st/12, if I have a bad day between now and then, I have no options... I'll have to take a sick day without pay.  That's gonna hurt.  I have a lot of anxiety knowing that I have no cushion.

One day at a time, I guess.

As for the 'drugs' in the title of this post, I'm not on any right now. I didn't like my options, as they all have crazy side effects and risks.  I talked with my doctor at the last visit regarding this and she was understanding. She gave me information about another drug on the market right now called Gilenya. It's the first ever oral MS drug and it's only to be used if the patient doesn't respond to any first-line therapies, which is my case. I took all the information and have been doing my own research ever since. It's so new that it's actually not carried in pharmacies yet. I agreed to go though all the initial bloodwork screening as we wait, in the event that I pick this drug. I know I had a little rant a couple months back about how I was done with drugs and the poison it puts in your body and how eating healthy is the only way to go, but I've had a semi-little change of heart. I'm not saying I'll be picking a drug and I'm not saying that I won't, but my mind is a little more open. I'm feeling so amazing but I can always easily remember how it feels to be sick. And I don't ever want to get sicker. Are drugs the only way to prevent that?  Maybe. Maybe not. That's why my mind is open.  More on this topic later.

9pm and time for bed - the earliest I've put myself to bed in 3 months. Wish me luck tomorrow!

H. xo

1 month and a dreaded doctor's appointment later...

So I know it's been a while since I've posted anything, but I've been feeling like my normal self again and for the first time in a long time, things other than the TV & computer have been keeping me busy!  Sure, I miss my morning ritual of The Price Is Right but I started to realized that yoga & socializing were probably much better hobbies to have. Before I explain where I am now, I want to take you all back a few weeks to where I left off from the last post....

Back on November 11th, I took a moment of silence for our fallen soldiers and then another moment for myself.  Today was one month since the CCSVI procedure. A lot has happened since I've started this journey and as I become more in tune with my body & myself, I become more appreciative of the things in life I may have taken for granted in the past.  I appreciate the fact that I can get up every day and fight, and ever though I may have to fight harder on some of those days, at least I'm still getting up.  I think I've finally gotten the basics drilled into my head: as long as I keep my water intake up, eat well and rest when I'm tired, things are more likely to go my way.

I've been scheduled for an appointment with my neurologist for November 15th.  She hasn't seen me since late August when I had my relapse and when she officially took me off work "until further notice".  This upcoming appointment is suppose to be a re-assessment of my MS & my condition post-relapse and a chance for us to discuss the nasty drug options she gave me in the Fall.  Personally, I've been dreading this appointment from the day I decided to go to California for treatment... a treatment that most all neurologists have been so close-minded to that they refuse to discuss it with their patients at all.  (I've heard stories from people who've gone to their neuros after treatment for CCSVI and have been laughed at for "jumping on the bandwagon" and "wasting all that money")  My neurologist in particular has never supported the theory of CCSVI.  I know this because I have MS friends who go to her as well.  I've never had the CCSVI conversation with her - mostly because I'm chicken-shit - haha! Once I made up my mind that I wanted to be treated, I didn't want to be talked out of it and I think that's what would have happened if I had discussed my plans with her.  To me, I always thought doctors were suppose to know & have all the answers when it comes to a patients health... but if I've learnt anything other the past year, it's that they don't.  And even more disappointing than that, one doctors opinion/method can very easily contradict another doctors opinion/method.  So in the end, you do what I did - close your eyes, go with your gut and hope for the best!

I literally couldn't eat or sleep the day before my appointment, I was so nervous.  Along with not knowing how she'd react, like I've told you before, she's the one who basically has a huge say in me getting my ATC medical back.  What if she was so furious that she wouldn't assess me for work? What if she yells at me and I cry in her office?  What if she puts me back to work immediately when I'm really not ready for the shift work yet? I didn't know how I was going to have this conversation and I was freaking out! I decided from the beginning that the truth would be the only option and I'll always stand by my decision to have this done. And good thing I did because the appointment couldn't have gone any better. When the words finally came out of my mouth, she didn't yell & scream & punch me in the face, like I dreamed the night before. She didn't look surprised at all.  She barely even looked away from the computer she was typing on.  Without missing a beat, she asked when? and where?, then asked how I felt now compared to before. She asked if I was put on blood thinners and then continued on with my regular check up.  I told her about my concerns and anxiety about getting back to work and she eased my mind about all that as well.  She explained how getting back on a normal schedule will mostly likely be tiresome and maybe even stressful, so she wanted me to check with NavCanada in regards to maybe working part-time/half-days so that I could gradually ease myself back into a full-time ATC shift-working schedule in about 8 weeks time. I got everything I wanted from the appointment and more! The stress of having that CCSVI secret between us was now gone and the anxiety I was having concerning my return to work had been addressed, with a plan in place.  

Today turned out to be a great day, as I left the Health Science with a huge weight lifted from my shoulders.  Sheldon and I booked a last-minute trip to Cuba to celebrate both my good report at the doctor and him finally being done training as an Air Traffic Operations Specialist (ATOS) with NavCanada... a much needed celebration if you ask me!

Hola from Cuba 1 week later!