Things

Lordy, lordy. I can't believe that I haven't written a single word here for nearly a whole month! It's not that it was bad events that kept me from scribing away, it was because there isn't enough hours in a day. And hours string into days, then weeks and then I finally sit down and wonder where the hell did the time fly? I will try my very best to give a little recap about my happenings so here goes.

As far as my trip to Boston went, I found out some interesting things from my EMG test. For one, the neurologist believes that what happened to my muscles was probably autoimmune or rheumatological and not so much a neurological process such as dystrophy. I could not believe it....all this time, doctors believed that I had a funny distrophy when in fact it is probably a myopathy stemming from a very hyperactive immune system. I thought that was wild. I still have to see the rheumatologists there so we will see. Another intersting comment was that perhaps my Ehlers has something to do with this, this disorder does affect the muscles causing weakness. I don't think that the diaphragm is usually affected, but he felt that perhaps some other disease process might have destroyed it. It is good that I got some sort of answer, but I still feel like I am back in the beginning, right back at the drawing board. I feel like I have come full circle, in the beginning of my nightmare, doctors believed that this could have been rheumatological but then leaned towards a neurological problem, now I am back in the beginning. The difference is that the doctors know what to look for now as I do have the diagnosis of Ehlers Danlos and other collagen vascular abnormalities. This could change everything...the diaphragmatic pacemaker still might be an option but there could also be more doors opened as far as a therapy goes if they actually come up with a diagnosis or explaination.

My mind is whirling around and around with all of this, I just want an answer and I will go from there. These last 5 years have been maddening in all facets of my life. It has been changed profoundly and still changing. I don't know what to expect and that scares me sometimes. All I do is that I hang on with everything that I have and try not to get too discouraged or frustrated. Some days I just want to escape from everything even for just a little while. I wish that I could throw away this body that I have and exchange it for one that doesn't require so much to simply keep alive. I know....wishful and impossible thinking, but let's be honest. How many of us have actually felt this way at one point or another? Especially when the days are difficult and we are feeling the effects of our diseases, who doesn't think about it once in awhile? After I am done longing for the impossible, I realize that life just has to go on and I have to do the best I can with what I have even if the pain in my joints is blinding or my lungs are infected and I am coughing non stop. It is my body and I must make do with it.

Aside from my crazy lamenting, I have taken a liking to driving my green beast around. That's right. I am officially on the road and haven't damaged or killed anyone or thing...yet and I hope to keep it that way! The various handicap modified controls took a bit to get used to, but it wasn't too difficult. I don't drive far, just to my local appointments and store and running quick errands. This is huge....I haven't been driving for over 5 years, to be able to hop (okay, creatively crawl into) my van and to just drive is awesome and one of the biggest improvements to my life in such a long time. I feel free, I don't feel like I have to depend on my mother or anyone else for so much anymore. I can just get into my van and go now, I don't have to ask or go around anyone else's schedule. If on a whim I want to get a pint of Cherry Garcia Ben an Jerry's, I can proudly run the roads to claim it. If my kids want a ride to their friend's house, I can take them. If I feel like I am losing my mind and just want to get away for a few hours, check that one off of my list as well. Can't you guys just tell that I am just LOVING this?? :) All I need to work on is parking...that thing is huge! I have no peripheral vision to begin with, trying to park this bad boy can be very tricky. Backing up is just as fun sometimes, mirrors seem to confuse my eyes and brain so I have to use reference points. I know that with time, I will get used to this as well...hopefully intact!

What else..what else has happened these last few weeks. My mom has a 60th birthday party coming up and I along with my other 4 siblings are planning this huge bash for her. I know that she will love it. I was having a huge problem planning around her as I live with her and she is extremely snoopy. She can even overhear my phonecalls from a few rooms over so you can just imagine just how hard it can be to plan anything without her getting wind of it somehow. That problem has been solved....she is now watching my brother's kids 5 days a week so now I finally have precious time and space to help plan this shindig. Her party is in about 3 weeks, there is so much to do along with some serious shopping to get ready for this event. I will be a mess by the time her day comes but at the same time, I can't wait until November 15th is actually here. She is going to love it, we have invited all of our family (which is huge), her friends that she worked with for decades (I hope I didn't forget anyone...that would suck) along with some other close buddies that she has. It feels like everything is a mess right now and unorganized, but I think and hope that it will come together in the end. It is going to be a 60's theme, that was her hay day back when she was a teenager. Everyone is going to wear something 60's, some of the guests said that they were wearing a full costume. That should be cool. I will be sure to take zillions of pictures.

Other than the driving, planning and appointments, not too much else has happened. There haven't been any more disasters to report like there were last month with the exception of having to replace a kitchen faucet that needed it anyways because it was as ancient as the pyramids. My health has yo yo'd a bit though...for a few weeks it was rough with a horrible sinus infection that managed to infect my lungs as well so I was antibiotics for about 3 weeks which seemed to help, but I feel like my lungs are getting a bit more gunky. My trach is smelling like tell take pseudomonas or some cousin or uncle of that bug. I am trying to nurse it for as long as I can. I DO NOT want to get sick before my mom's party...that would suck badly. If I have to, I will go in after the party but not a single day before. I have worked too hard on this to miss it and I want to be there for my mom on her special day. It isn't everyday that a person turns 60.

Okay my friends...I will close for now. Until later, peace....Jenn :)