Today is another hard day in the world of Multiple Sclerosis. This seems like a never ending battle that I am losing more and more each day. I should not say that because I was feeling great for a week or so but that was short lived. I just do not think I will ever get used to how fast things can change with my body right now.
Last Thursday I had my follow up visit with the neurologist and things were not perfect but they were a whole hell of a lot better than they had been. I could walk and I went in for an eye exam just to get something stronger to help with my vision until things settled down a little bit. <insert happy face>
Then Friday I noticed something ‘funny’ again and sure enough come Saturday my walking was going down hill AGAIN. So I mentioned to my Mother and Michael that I was going to call the neurologist and go get an infusion some time that week just so it did not get as bad as it did last time. They all thought that was a marvelous idea!
Sunday rolls around and my walking was right back to where it was before. How absolutely frustrating! To make matters worse we had plans to go to the Renaissance Festival with my friends to celebrate a birthday. AKA lots of walking around and pushing a stroller. TERRIBLE IDEA. I made a joke to them that I should have just dressed up as the town drunk and no body would have known the difference!
So Michael is freaking out again because there is not a thing he can do and my Mother is taking yet another day off of work to take me to the neurologist and watch Little Mike. So I have to do at least another day of dumping my precious breast milk!
I hate that these infusions take one hour because I can not sleep during them due to my mouth tasting like metal, I can not work due to the fact I need a replacement laptop batteries and I need someone to take dote on me and the baby when I just want to finally be able to take care of us myself, it has been 9 weeks! I am going crazy over here!!
I wish I could just go back on Tysabri and just not have to deal with this bologna! The worst part is that I would love to just be able to cry my eyes out. I want to bad but now I think to myself you have to keep it together because you have a little one who is depending on you and you have to be strong for him. So the tears of frustration just hold strong right behind the eyes…