Another Valley

I haven't written in over 2 months. I'm not much of a writer. The last while has been up and down. I had a small relapse in November and went on steroids immediately. I also stopped taking Rebif as it was not working.  Once I stopped it was amazing how much better I felt! The medicine drags you down Sooo much. In that time I had to decide on a new drug. I chose Gylenia. It's an oral med (both choices were) and helps reduce relapses by 64% in comparison to 30% of Those taken by injection.  It's complicated to get on but once you do there's little to none day to day side effects. It does have secondary problems but if you are healthy these shouldn't pose a problem.

Right now I'm completing all of the tests to go on it. I have relapsed again and the numbness drives me slightly crazy :). I am still functional though but I can feel it in the fingertips again which is my concern. I don't want to lose my strength in my hands again. That started in November which is why I went on steroids ASAP. I can't function if I can't use them properly. I'm going to wait and see as I was just on steroids in November and don't want to go back on them if I don't have to. The feeling still hadn't come back completely from my last issues so I guess that is always the bigger concern. How much will I regain?  Hard to say but I'm very anxious to start the new medication. This is kind of the final option for meds to work so I'm praying they do but we won't know for another year.  I suppose I could try the other oral med but the side effects sound nasty.

Anyways. That's the gist of it. Just one more valley and another mountain to climb.

A Little Lecture 😉

It's been two years. I hear support from the ones who are close to me. Even from some who are more like aquaintences. But to hear when people question why and how and what you are doing... is tough. And it's not to me but to others. I honestly think gossip is the toughest thing to swallow. So please consider your words before you speak. And be careful little ears what you hear. Being on the receiving end is supporting it just the same. That's it. Short and sweet and to the point. Lecture over. Thanks for listening. 😉

I still matter

I'm tired. Tired of fighting for every bit of help.  I had my MRI almost 2 months ago. I've been having issues, some of which have dissipated in the last 4 weeks, some that have gotten worse. I've called the clinic. Spoke to the nurses. They've left notes for the doctor. But 2 months later I still don't know the results. I still am not getting any help for the upper body numbness, tingling, and itchy sensation.  In a weird way I'm thankful it's completely numb now so it doesn't hurt and itch. But why should I have to be grateful for that?  I don't know if the meds are working because there is no report yet.  I don't know who to blame.  A doctor with over 700 patients is definitely overloaded. But I still matter. So who is here to help me?

15 years from now

It's hard sometimes to not think about the future. I look at my symptoms compared to what they were two years ago. I see how much more frequent things are and how much faster they occur.  It's hard to not get discouraged and think about where things be at 10 or 15 years from now.  What will it be like when I'm 50?  (That's 17 if you want to do the math)

There has been an ALS ice bucket challenge and I think about the awareness it is bringing. 400% increase in donations!  That's awesome and amazing. It's a scary disease as it hits hard and fast. What I wish is that MS has the same awareness brought to it. There are many with progressive MS and 65% of people with Relapsing remitting MS will develop SPMS (secondary progressive MS) within 15 years. This is when your symptoms or relapses never go away completely and the conditions continually get worse. It sometimes feels as though the odds aren't all that great.

In the last couple of months I've noticed that I'm losing feeling in my feet. It's not returning. And my face on the left side usually has slight numbness on a regular basis on and off throughout the day. It's not major things but it's slow and sometimes easy to forget where I was a few months ago.  I heard one person say that they love the MS walk but the one bad thing is that they notice how different it is for them every year. They see the decrease in capabilities. I think that's a good way to put it. Sometimes I forget what normal feel likes cause I'm always adjusting to a new normal.  In a sad way this blog will help me look back and remember. I hope 15 years from now I can look back and see not much difference but I'll be honest...its tough to think like that. Maybe just maybe in 15 years thee will be a way to fix me.

Better than expected

I'm almost too tired to blog but it's been a while so I'll keep it short. Just wanted to say that I'm very thankful for the staff we have. I've been able to trade off with Shawn and supervise for the most part. They've caught on really fast and so far are very reliable.  I feel like this has turned out better than I could have imagined. I was worried I was going to be there way more and be exhausted for the first while but it's been the opposite. Even if I'm there I just watch and help the odd time. It's very awesome to see how this has turned out. Shawn is back to work in a few days but that's ok. I'm Sooo happy with our staff so far!  And so grateful for my mom who's held down the fort here the past 2 weeks:)

Having said that it feels like the summer has flown by! But we are taking the long weekend to go away and spend some quality time as a family before school starts. Only 3 weeks til then!

Don't Be A Stranger

I hate when I can't sleep. I slept for about 2 hours. Woke up. Now it's been an hour and I can't get to sleep again. Right now is not the time for insomnia!  

Our cafe is opening soon and I feel like I'm on the verge of burnout. There is so much going on right now and even though I'm doing only a fraction of what Shawn is, I feel like I can barely keep up. Don't even begin to ask me when the last time I cooked a meal or had time to clean. There's always time I guess but not the energy. Even if I go help out for half a day I'm shot.  Having said that...

I can't wait until we're open!  I'm very excited and nervous. I'm not sure what this will look like for me but I'm excited to be out of the house a bit and I'm sure you'll see me sitting with a latte in hand quite a bit. So stop in to visit and don't be a stranger. If I'm not in the main area feel free to peek your head around the corner into the office. Lol. At least for the first few weeks while we attempt to figure this out. Thankfully Shawn has holidays to help get this off the ground and my mom is coming to help hold down the fort here. We might just get a home cooked meal yet!!  

Well it's 3:20 now so I'm going to attempt some sleep. Our first order comes in tomorrow and I get to play some more with the drink machines. ;). 

Maybe one day

I think I need to live in Northern New Zealand. Where the average temperature is around 20 degrees. I think the coldest is 7 degrees and the hottest is 29. Lol. It's tough to be outside. I don't hang out in the heat. It's hard to work in the heat. I need air conditioning and coolness!!  It zaps me. Just like that. Almost with a snap of the fingers the life drains out of me. If I go in a hot tub or have a hot pack on everything goes numb. And not just slightly but entirely!  Thank goodness the feeling comes back!  I hesitate to say bring on winter because other than hockey I hate being frozen too. Too bad it can't be fall all the time. But honestly I'm sick of summer already. The only good thing is I don't have to bundle up. I could handle an ocean though. Where the breeze blows and I can just relax. I've never gone but maybe one day. :).  Maybe one day I'll live in New Zealand. Maybe one day there will be a cure and I can stop dreaming about it.