Electrified!

Yes, that's right. Electrified. Yesterday I had my EMG at MGH, I still hated it even though the doctor was very kind and as gentle as he could be. But even with being careful and kind, those needles still hurt! The thing is, the doctor has to purposely hit a nerve with them, so not only do you feel a bit of stinging from the needle itself, it is now lying on a nerve. As if that weren't bad enough, the doctor makes you contract that muscle by moving the appendage being tested. When he was testing my calf, I had to move my toes up and down, feeling shooting pain with each movement. This was a necessary evil so that he could get enough data as to how my muscles were functioning.

After a long hour and a half, it was over. I felt like I was beaten, my muscles were so sore. Luckily I held my coumadin so that I didn't bleed into my tissues. That would have been much more uncomforable for me with the added pressure of blood. The doctor did tell me that there were some abnormalities and that my attending would get back with me as far as any further testing or diagnosis goes. I hate waiting for results but understand that they have to review my ginormous file with past muscle biopsy slides before they come to any conclusion.

What was really neat is that one of the doctors on my team told me about a much newer and revised diaphragmatic pacemaker that are being used on those with myopathies. On people like myself with good results. It is in the trial phase but the good news is that trials are beginning in Boston soon and she thought of me immediately. I have a few things on my side, I am young and motivated and pretty much mobile. I just have sucky muscles (and lungs, but my muscles suck more at this point). I couldn't help but get excited...wouldn't it be neat to be rid of this damn ventilator??? She told me that there were people that who are totally vent dependent now vent free with this device, she also told me that I was a good candidate and that it was worth considering. Wahooo!!! Hope...I have new and fresh hope that I can be rid of this sucker which will also improve the status of my lungs. I won't get so many infections...sure I will still get them but not nearly as frequently. I will finally be able to smell my food better, my sinuses have taken a hit from being vented as well (they were bad enough to begin with). I wouldn't be lugging a 20 lb monster around with me, all I would have is an external battery if got the pacemaker. I also think that my insurance company would say woot to me getting the device as well because maintaining me on a vent is extremely costly. Keeping my fingers crossed, tightly.

Afterwards,we visited the market in Charles Plaza which was very cool. That place is huge with all types of goodies there. The aromas nearly drove me wild as I was starving. We grabbed some drinks and decided to hit the road and find a place to eat on the way home. My dad wanted to beat rush hour in Boston, I din't blame him for not wanting to stick around and eat there. Coming into Boston was bad enough, there was a game or something going on at Fenway so the traffic was a snarling mess. It took forever to get there, I wound up calling the EMG lab to tell them that I was going to be late. Thankfully they were fine and told me to take my time. Even if they weren't fine about it, I wouldn't have left until I got the test done. It takes 3 hours to get there, to not get it done wasn't an option.

After the few times that I have been in Boston, my dad and I have come to the same conclusion: it is much easier to get into Boston than it is to get out of Boston. I have never seen so many confusing, twisting roads without names on them. Maps are useless and frustrating. We did finally find our way out of Boston curtesy of a fellow Bostonian who let us follow him until we hit the turnpike.

I finally made it home around 5'ish and was dead tired. We had been on the road since 6 am and I was going on little sleep. I crashed into my bed and dozed off in record time. Thank God for comfy beds!

Until next time my friends, Jenn :)