New Bigger Bed

Some of my posts have been delayed by the whole 20/20 experience along with the gall bladder problems all at once in the past few weeks. However I did want to follow up one of my earlier posts. I was looking for a bigger bed to fit my mom on it with me and give me more space to spend the long terrible sick days in. We found a beautiful mattress box spring and frame set from a college student for $300  a few weeks ago, and picked it up with the help of my boyfriend and his dad's truck. Then we ended up selling the adjustable bed and making back $200 to ease the financial burden. Now I've just been looking for 400-500 thread count sheets so I can really enjoy the experience of having a bigger bed and spending 3/4 of my time in it. When the news crew contacted me I had just finished setting up the bed and getting my room all clean and gorgeous. Today I just packed up some random cluttering items and my old sheets and bed skirt into a tub and slid it under my nice new storage space. The smile it brought to be able to put stuff under my bed made me want to post and update everyone on that situation. I get my surgery tomorrow Morning on my gall bladder at 7:30 AM and I will be able to recover in the nice big bed for the next few weeks.

Sudden Onset of Abdominal Pain

Two weeks ago, and I may or may not have posted about this, I was stricken with sudden upper abdominal pain. It grew to the point where I couldn't breathe and stretched the width of my rib cage right beneath my ribs. I have felt a lot of pain in life, with the surgeries and ovarian cysts and all, but I thought that was the worst pain you could possibly feel. My PCP didn't take it seriously as it had passed after about 3 hours and said it could just be an upset stomach. With great frustration I got an ultrasound the next morning and was told that if there was anything on it, we would get a call within 24 hours. A week and half later I assumed it was clear and all was fine. Then I tried to go to bed last night, like any regular night, and it started again. After 35 minutes of it getting worse and worse to the point I could not breathe but a small gasp and I was dizzied with pain worse than the last 'episode'. I finally gathered my pride and woke my mother to beg her to haul me to the ER. We tried to avoid it at all costs but there was no way I could survive any longer, the whole car ride filled with constant moaning and wreathing in pain. I told her to just shoot me and get it over with. Basically the doctor said the ultrasound read that there were gall stones. After doing blood work and a urine test, they sent me home with pain medicine, anti nausea pills, and a puke bucket, and told us to contact my PCP again. This morning I was not able to sleep after getting home at 6 AM, and instead spent the two hours vomiting my brains out in a pink tub on the floor. We rushed to the doctors office to be sent home yet again in no rush. Obviously these doctors have not had gall bladder problems, if this is even gall bladder. I get another ultrasound tomorrow morning and meet with a surgeon on Friday. Hopefully we can get some answers and figure it all out before the end of next week. My birthday is tomorrow and I will be spending it getting up early and being in pain at the hospital getting an ultrasound for the morning. Oh joy, the life of a Lymie.

Hyperhidrosis

'Hyperhidrosis' is defined as the condition of abnormally increased perspiration, more so than is needed for the regulation of body temperature. For about 10 years, since I was just a little girl, half of the back of my left hand would on and off drip sweat. I'm not talking drops, I'm talking soak through my sheets, drench paper towels, gather into a stream on the back of my hand type sweat. It has only been on the back of one hand, and I never understood it. I do not at this point believe it is connected to the Lyme, but I think the supposed Babesia with symptoms of night sweats and endocrine problems, could be worsening it in the past five years. I went to a dermatologist when I was in fourth grade, but he was not sure what it was and had no solution for me. Deodorants have worsened it instead of helping, and I never knew, this entire time, what was going on or that there was a name for it. Every doctor I had seen said it was the weirdest thing they had encountered and had no help for me. They said I was the only patient they knew with such a problem. Recently, my PCP told me I had reversed sweat glands on my left hand, so they were on the back instead of the palm. My right hand is fine, but not the left. Sometimes in the winter it gets so bad I can't wear a glove on that hand or I sweat straight through the water resistant winter glove! This made working at a ski resort and ski racing so difficult. Finally I found my way to google and typed excessive hand sweat, and that led me to a new door opening up. I found my way to the International Hyperhidrosis Society, with information and tips on treatment and even a doctor locator. http://www.sweathelp.org/en/

I found one doctor and got a two week appointment with him, which I saw last Monday. He was quiet and conclusive but had terrible bed side manner and I will not be returning. He wrote a prescription for something to put on my hand, did not tell me anything about it, and sent me off in the matter of a few short minutes. I have an appointment saved with a doctor at Manchester Dartmouth-Hitchcock Medical Center in Manchester, NH and will be seeing him in August to get a second opinion and see what he can do to help. I hope this post may find someone else suffering excessive sweating that needs a direction to be pointed in as well.

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.

Relapse from The Past Week of Stress

http://www.youtube.com/watch?v=aNOxlAxX_tQ&feature=youtu.be

Review of 20/20

When the show began you could hear a pin drop, but the minute my face came across the screen for a small advertisement at the beginning, I was squealing and so thrilled to see myself on TV. Anybody would be. However I was nervous that the editors may try to make it look like I was crazy, healthy, and needed to be off of medicine. They didn't do that. The show was a gracious 10 minutes of me time and it opened many eyes, connecting foreign accent syndrome with Lyme Disease for the first time and bringing up coinfections on national television. Here is a link for those who did not get to see it:
http://abc.go.com/watch/2020/SH559026/VD55204215/2020-518-medical-mysteries

For the rest, we all agree. The time frame was stressed, an hour would have been nice, but they did a good job covering my story with the time they had. They concentrated a lot on prom and how there was hope for the future instead of my current lacking health, but I appreciate the producers soo much for taking my story on and working with me last minute. Even coming to NH for the entire interview process and fitting it in for two days. It was a blessing to work with them and the film crew, and a bigger one to see the result. Already, five others who thought they were alone have contacted me, saying they had accents too! I am thrilled to open many people's eyes and to connect with people to let them know they are NOT alone. Most of the world is on their side, and I'm an email away!

Link to Youtube

Here is an easier way to view all my youtube videos from last summer to now. Click the link, or copy and paste into your URL bar, and view all the videos instead of just the four previewed videos at the top of the blog.
http://www.youtube.com/playlist?list=PLF64C13DFAD339559