Handicap Accessible

For me, a relapse comes as a form of aftermath. Sometimes it lasts days, sometimes a week or more, but it always happens after a big event or sequence of events that take me pushing through multitudes of stress and fake smiles until I collapse. Usually I don't feel it until I get home and start to relax and wind down and then my body crumbles into a heap of crippling pain. The neurological symptoms of this disease are life altering and disabling. My legs crumble and shake with fatigue, and I lose track of how to lift one leg up enough to step forward. Usually I end up just falling forward as my knees buckle and bend beneath me. Sometimes it is first thing in the morning before I even know that I can't walk, and usually I end up hitting my shoulder, head, or side on some object, be it furniture or a book on the floor. After navigating the house many times, weaving through laundry baskets and doorways to reach my destination, I have gotten pretty good at maneuvering a wheelchair from point to point. Some sufferers, especially those with Picc lines, have a harder time moving around than others. The stores I have been in have had very inadequate handicap facilities and I'm determined to go on a crusade and raise the awareness of it. A store owner should be able to maneuver through his entire store, bathrooms, doors, even work room where employees are, in order to call it accessible. I've seen bathrooms that my mom cannot get into easily, forget a wheelchair and a second person. It's messy and difficult and a challenge. This reminds me that I'm not normal, no where near it, but I'm okay with it because one day I will make it so other's can at least feel closer to being normal.  It's hard to be in a wheelchair, and harder to feel so dependent on the spaces around you. You find yourself saying 'Well I can't stop to eat there or there because I can't get into their bathrooms', which is a sad thing. People should not govern their decision because of the accessibility in an 'accessible' place. If it's not friendly to the handicap, then it shouldn't be friendly for the well. For this reason I am going to start a blog website for handicap accessibility. I'm going to post pictures and descriptions of all the many places labelled accessible and how amazingly difficult they are to navigate. I hope to get a lot of support on this because one day I would love to take it to the legal level and pursue laws and restructuring of the 'accessibility' definition! I'll post more when I do find the patience to pursue that path.

Another Month

Overdone, tired, shaken, and stirred, my body has made it another month. I've pushed through to do certain activities, still in the wheelchair with no leg strength, and have just increasingly worsened. Last weekend was the Lyme Conference for our support group, the only in our area, and many doctors and sick and even healthy people came to help and learn together. I made buttons for the support group, rounding up a few helpless souls, whom all regretted the process, to assist me with the tedious task. It was back breaking work, and really wore me out. Even our goal of 500 was not met, we skimmed by to 300 buttons. The conference had a long day, and by the end, I was hauled out of their shaking really bad. Pushing it yet again so hard was what threw me over the edge again. That night I started autism like symptoms, so bad I can barely type this update. My mouth is non stop, and my brain is off the walls. I cant concentrate, and I have a crazy way of communicating now. My voice is weird, almost like an accent, and I am repeating everything multiple times. I would like to go see Dr. Jones like I've been told I should so many times, but his office is full. However he recommended we see a Dr. in Vermont who would consult with him and maybe take my insurance. I already met the Dr. at the conference and listened to him talk. He saw me in the wheelchair, shaking at the end, and insisted he'd be able to rush us in this week. Today I saw the neurologist, a brain Dr. who was not Lyme friendly, and he suggested this is serious and to hospitalize me at a children's center at either Boston or Dartmouth. He's worried that he can't assist me. However, those two hospitals are not very open to the Disease in it's Chronic form so it would be a battle. Right now we are trying magnetic therapy and other physical and occupational therapies to help out, and my mom is making me an appointment with the recommended Lyme Specialist. We shall see what he thinks for treatment.

The Ugly Truth

Hey everyone, just wondering if anyone has noticed this. First of all, we have all been in a wheelchair or done something to call attention to ourselves as sick along this journey. Has anyone noticed that you don't get stared at when you are in a wheelchair? The stereotype is to believe that everyone is looking at you and thinking your weird, oh no! The truth is, when someone see's a young girl/guy in a wheelchair, or anything close, the tend to look away, look down, walk the other direction, or even dash out of your way. Not because they think you're weird, but because they care for the sick. Anyone who did not care would giggle, or laugh, or whisper about you. Int he many experiences I've had in public with either a mask on, or a wheelchair under me, no one has ever once asked me what was wrong, or criticized me! The Ugly Truth is you do what you got to do! Believe me, riding in a wheelchair may be ugly but the truth of the matter is, we are all in it together, you are NOT alone! :-D