I, of course, have wanted to take on the world, especially when Im laying down. Ive had 2 weeks of HGTV and cooking magazines under my skin in the hospital. So, Im super motivated...until I sit up!!! I have amazing plans of planting garden boxes right out on my deck where I can get to them easily to water and enjoy. Tomatoes and peppers and cucumbers galore. Ive already got my pressure cooker and canning jars ready! Also have a line up of garden pots and plants on my wish list to transform my view of the deck into a living wonderland of sprays and blooms. So far, I managed to start 2 small pots of strawberries before I crawled back to the couch.
My days inside will soon be lightened by our own aquarium,, which a friend generously offered to donate and set up.. We cant wait. It was one of our fondest and fun memories at the hospital.
When we moved into our new house, we opted to ditch the TV, which has been great- haven't missed it. But, when stranded on the couch for hours on end, distraction of fish will be nice.
I have spent a lot of time this week setting up my new web site (www.mybeautifullifewithms.com). Im hoping it will eventually host my blog and also serve as a resource for all those affected by MS, children to adults. My hope is when I fine tune the site, I can eventually make an income off it.
My next appointment is Wednesday, first thing in the am, with my MS Specialist. The goal is to start on an MS modifying agent...you have heard me speak about this before if you read my blog, but now its countdown time. The drug of choice, that the doctor recommends highly, is Tysabri. Its a great drug, so all the doctors say, and it will give me the most chance at regaining a totally normal lifestyle. They say it might even halt MS in its tracks and be 80% effective at preventing other attacks. It is given by a once a month IV Infusion at a center especially trained and licensed. Sounds great......except if it only didn't come with the "black box" warning label that theres a rare chance it will increase the risk of PML. Whats PML? Great question. It stands for Progressive multifocal leukoencephalopathy, a rare brain infection that USUALLY causes death, but otherwise renders you a vegetable. This drug came onto the market, I believe, in 2006 and was pulled off after 347 confirmed cases of PML. What they finally found, though, is a link to PML and the JC Virus. If you don't have the JCV, you cannot(so they say) get PML. So, whats the JC Virus? Another great question.... Nope, it not some rare virus you may possibly contract from a 5 toed ant on the slopes of the Western Nile. It is a strain of the common cold. We have 3 kids and a household of 7, we not only have every, we probably create new strains of the common cold. The JC Virus is so common, it effects 70-90% of the general population. So, just because I haven't been exposed to JCV yet, doesn't mean I wont. What a decision. Ya know, looking back, how many sleepless nights I spent dwelling on what I thought were BIG decisions... Like who to date, or if to send my kid to camp,, or if to buy that new car. The next time you have to make what you think is a huge decision, think about this one: The chance at living a normal life or your brain possibly turning to mush(with NO cure BTW). I think maybe if I was older, or didn't have kids, or...or... The doctor keeps telling me what a small risk this is and how its such a front line drug..... I still have two nights to lose sleep over it I guess. and I better start now, its getting late..
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