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 meds....total 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.

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. 

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!