Thursday, 10 September 2015

Almost Half Way.

I finally feel kinda normal.  Like I'm finally not constantly being being looked at with a label.  Saying to people that I have MS still is awkward to say, but I don't have to say it often.  And when people ask how I'm doing, I feel like it's a normal everyday question.  Like they aren't talking about my disease anymore.  I don't want people to forget but I want them to remember when it counts.  The times that it matters, or when it's been a while and they are genuinely concerned.

I don't think I've gotten over the hurdle of complete acceptance and moving forward, nor do I think I can reach that point until I know this medication will be the right one.  In about a month from now I will have a clearer picture.  I will know if my lymph count has climbed back up or if it dropped. I'm thankful I haven't gotten sick and that I've been relapse free for almost 5 months now. But it's scary at the same time. My pattern has for the past 3 years to get sick about every 6-7 months. And once again we approach that time and just when I feel like I'm a bit normal I don't want to go back to being the sick mom, wife, friend. I want you to be able to ask "How's it going?", without a look in your eye or me having to answer "not great".  And I don't want to have to try and figure out a new medical treatment plan.  I just want to be able to move forward, 'cause once again I'm daring to get hopes up that you can keep seeing me as normal.  This next blood test is a half way mark and I want to keep moving forward so in a 6 months from now I can tell you I completed a full lap. And then I can keep moving forward instead of going back to the start.

Monday, 20 July 2015


I would probably describe myself as strong willed, opinionated, and independent.  I haven't ever had to really depend on someone before.  I like to be able to do things on my own, and my way. I grew up the youngest of 6, with my siblings being only brothers.  My youngest brother is 5 years older with oldest being 13 years older.  My mom went to work when we moved to Thompson.  I was 8 years old.  She started working full time when I was in grade 6. I've always been sort of "on my own" and I'm okay with that.  Obviously that's my personality as well but even after being married, Shawn worked a lot.  16 hour days a lot of the time, and we had little kids.  We've moved a lot and now finally seem to settling in.

After being diagnosed with MS I found it hard not to be busy. It's easier being a stay at home mom when the kids are little and you feel purpose.  I found it hard to stay at home and starting a cafe was a way to make me feel productive as well as be a part of fulfilling a dream of Shawn's.  I hate the feeling that we can't continue because I can't do enough.  I hate that it's me who can't fill the gaps and make it work.  His dream is falling apart because I can't help the business grow. He can't rely on me to help and I can't help and be independent in running this because of my health. That is a huge pill to swallow.  If I could hang on just a while longer. If I could make it through a day and be productive at home. If I could just be normal...his dream of owning a restaurant would be reality.  Instead I've failed at helping him. My fault or not.  His dream comes to an end.

Monday, 1 June 2015

I Want

I want my normal back.  I want to be able to not have 5000 things to do.  I want the energy to catch up on everything. Most moms feel this way.  Like there aren't enough hours in the day.  I have hours but not the energy to keep going.  I break after every hour.  Not even consciously anymore.  I just do it cause it feels like I should.  If I don't I will pay for it tomorrow or the next day.  I want to be productive.  I want to be the person who gets it all done.  I wanted to make pies, cut rhubarb, do laundry, and vacuum the living room this afternoon. What I actually did was, start laundry, cook bought pizza and load the dishwasher.  Yay me.

Wednesday, 29 April 2015

How Am I?

I was asked today how I was doing. I never really know how to answer that question, especially after a relapse. I'm doing well? I'm good compared to how I was? I'm feeling better now but not all the way better? Do I delve into details of my lingering issues?  The fact of the matter is I feel better than I did a month ago.  Much better. I am out of my relapse but not fully back to how it was before it started again.  I had an MRI done and I had one lesion on my spine that was larger than before, however it was no longer "active". That was the cause of ALL the drama!  Sometimes it's hard to wrap my brain around it.  How one tiny problem can cause such distress on the body.

There are lingering problems, mostly with numbness in my hands, but for the most part I feel good.  Good for what I'm used to. I need to give it a few more weeks to see if the feeling will come back, or maybe even longer.  I pray these new meds stop the frequency of my relapses, but the nurse said some people just struggle with getting the MS to settle down.  I hope that's not the case for me although that's the pattern so far.  I want to have years not months in between them. I'm on a second line drug as it is and next is a third line drug.  I honestly didn't know there was such a thing. I thought chemo was for cancer patients, but apparently if you arent responsive to the MS drugs that's the third route. So I pray I will be "fine" for at least one year and then I'll know these drugs are working.

If you're reading this please go to and search my name to donate. Donate what you spend on ingredients for a bake sale or for making cupcakes for your kids birthday at school. I'd ask you to dump ice on your head and make a donation but most of you have already done that.

Saturday, 21 March 2015

Make Believe

I've talked about it before but the mental game is tough. It's hardest at night or when you want to do something and feel like garbage. I feel like I'm constantly putting on a show. Like a select few truly get it. The issues I've been facing have been going on for over 2 months now. I thought they were getting a bit better only to have it regress almost back to the start. Ever watch the movie Men of Honour with Cuba Gooding Jr.?  He's in this deep sea diver suit and has to walk in it and every step is an effort. He fumbles to put stuff together underwater wearing the gloves and it's cold and things don't work properly. I know that's a bit extreme but that's sort of what it feels like when it regresses this bad. I have a hard time giving change out of the til, walking around, sitting is very uncomfortable because it's tight around the ribs. Never mind just the fact that it's extremely annoying to have sensory issues. When it's like this everything is work.  Everything feels like a workout. I thought I was on the mend for about two weeks. Thought it was just sensory issues to heal in the upper half but now it's all back.

I started my new medication Gilenya yesterday. Stayed at the hospital all day while they monitor your heart. Everything went very well. At the end I spoke with my doctor as at my last follow up a couple weeks ago I was told that the upper half numbness may or may not go away, but that's all it was. Only slight tightness and no heaviness.  I was walking much better. I could function.  Anyways he was aware last week that it was regressing and when I spoke to him again as it's almost back to the start at this point, he told me I needed another MRI.  This is the only way to tell if I have active lesions.  If I do he will "hammer me with steroids" because the longer this goes on the more damage it does.  The problem...wait time.  He will see if he can get me in in the next 2-4 weeks. Average wait time 13.5 weeks so that is expedited. But then another week for results and another to actually get started and finished the 4-6 weeks. And then at least 2 weeks to START working.  The whole thought is tiring.

Maybe it will improve on its own by then but they say that relapses last 6-8 weeks and this is defiantly past that. I wish I could write nice optimistic blogs right now.  Be an inspiration and one of those people who never complained ( do those people even exist?) I guess they do on the outside, but that's the face I put on for most.  When people ask I will tell some what's going on because I think people need to know to understand. I'm not helping advocate for this disease by covering it up.  However I don't let all my frustrations out, I probably overdo it cause I want to be a part of everything still and that helps my mental health. But many days, especially through rough spots it's a face I put on. It's all just make believe.

Friday, 6 February 2015

My Kids

Sometimes the hardest thing is trying to protect your kids without sheltering them from this disease. I want them to learn about it and know what's going on. To have concern but not to costume them with worry. Each child of mine is different and each one deals with it in their own way. Age plays a factor as well as personality. 

My oldest...well he's old enough to have Facebook and read this. I'm not sure if he does. He's not a talker about his feelings. I know he's concerned when he writes "I love you" in a text or gives me a hug goodbye. He's not an affectionate kid so the little things count. (If you are reading this I'm not trying to embarrass you). 

My second child is the thinker. He overthinks things at times and everything is factual. He is making a website for a school project to sell some of his crafts for the MS walk. It's not something we have talked about its just something he thought of on his own. To him it's just a new part of life. Period.  He doesn't think twice about what it entails. It is what it is and he's aware without making a big deal about it. This morning I told my youngest that I couldn't walk great so I asked him to go downstairs and wake his brothers up for school. My middle guy overheard me and came upstairs and asked why I couldn't walk. I explained that I could. It was just a bit difficult. Just like yesterday I explained. "Oh ok" is his response. Factual.

My youngest on the other hand is a bit oblivious. "What's wrong with you?"  I told him it's the MS and it make me numb. Like going to the dentist I explained. He grabs his cheek and asks " like when it goes blah". Ya like that I said. Don't worry I said.  I will get some medicine after we come back from your tournament and it will help me feel better. That's all he needed to hear because he's a worrier. He is a mommas boy and is very literal. I know him well enough that I can give him information but he needs the reassurance as well. 

I didn't feel so brave last night. I prayed. Prayed that it would all get better. That the feeling would all come back. Because that's just it.  With MS it might not. Some numbness may linger which is why I really need to get started on the new medicine and pray it works. 

Wednesday, 4 February 2015

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.