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.