Friday, May 21, 2010

The T-shirts begin to pay off!

I got my first check from Cafe Press for profits from my online T-shirt sales! Thanks to everyone who bought a t-shirt or gift item from one of my sites. I hope this is a trend. I will be very proud and grateful when I sign the check over to the MJFF; it may not be the biggest check they ever got, but it was, and will continue to be, a labor of love.

I was up at 4:00 this morning, which has become pretty routine for me. My foot is curling up in pain, my body is shaking with cold and PD, but I have my kitty warm on my lap, and I have that check sitting next to me on the desk, warming my heart. I think it's going to be a good day...

Monday, May 17, 2010

Portraits in Courage

I have met some amazing people as a consequence of having PD. People whose lives have been upturned by a chronic disease, be it Parkinson's or RA or Lyme Disease or MS or other conditions, who have responded with courage, grace and selflessness. Instead of sitting around feeling sorry for themselves, these incredible people look for something positive to do to help others and to better their own lives. These are my inspiration; they keep me going.

You warriors know who you are: Karen, Pokie, Judy, Sherry, Bob, Dan, Sass, Auntie J., Enzo, Cherie, Nicole, Dixie and a whole bunch more. I admire your attitudes so much, and I try in my own feeble way to follow your lead.

This weekend I saw yet another example of this kind of courage. My friend Karen ("Btrflynana"; see her blog on my blog list on the right) is battling chronic Lyme disease. She was first diagnosed with Parkinson's, which is how I met her. Then, the diagnosis was changed to MSA (multiple system atrophy), but she didn't think her symptoms matched either of those diseases, so she started researching on her own and came up with Lyme's Disease. The symptoms match, and, contrary to popular belief, the bacteria is present on the West coast, just not as abundantly as in the East. This idea was met with skepticism, dismissal, and even with ridicule by her doctors. Apparently, a lot of doctors don't even believe that chronic Lyme disease even exists! Meanwhile, Karen's symptoms had progressed to the point where she had to quit her job and was in danger of losing her house (her husband was already disabled from a fall on the job years ago). She was in constant pain and had difficulty doing even everyday tasks. She did more research and found a "Lyme literate" doctor on her own, who gave her the appropriate tests. She tested positive and started on an antibiotic treatment. Today, she is making progress, though she's still suffering with pain, movement problems, speech issues, and a whole constellation of other symptoms. She is working very hard to raise awareness of chronic Lyme disease, knowing that there are others out there who should be tested as soon as possible. She bugged and badgered a local movie theater until they agreed to show the documentary movie "Under Our Skin" for a couple of special screenings. I went to the screening yesterday. The movie was powerful, compelling, sad and hopeful all at the same time. It really helped explain the Lyme controversy, the Lyme disease epidemic and what kind of things Lyme can do to a person. Karen and her husband Al had run around town putting up flyers the day before, because her ad got bumped off the local paper at the last minute. Nevertheless, there were quite a few people there, and we all received an education about Lyme disease, which was the point of the whole thing. Brava, Karen!

It also happened to be Karen's birthday, so after the movie, we all went to her house for a barbecue. Whew! There is no way I would take that on after a couple of days like that! But that's Karen. She responds to adversity with determination; I respond by taking a nap and hoping it all goes away.

Sunday, May 9, 2010

Happy Mother's Day

Happy Mother's Day to all the Moms out there.

My biological mother died years ago (1986) of breast cancer. It was terrible. Fortunately for me, I had another mom; my Stepmom, Jan. To be sure, we didn't always get along at first. She came into our family at the tender age of 24, and suddenly had the care of a 10 year girl and a 12 year old boy, both of whom still had dreams of their own mother coming back. She quit the job she had worked so hard at; she was moving up fast in that company, but she thought it was more important to devote her time to getting to know me and my brother. What that meant for us, though, was that we had to say goodbye to the nanny who had raised us for the last 5 years. Resentment galore! There was a lot of friction in our family for years; it was rough on us kids, and very rough on Jan, too. But after we all grew up a bit (quite a bit, in my case) Jan and I found that we had built a friendship, and then a real mother-daughter relationship grew out of that. Part of it was the birth of our little brother, Drew. He was the sweetest, most adorable, little boy ever; even when he was a baby. Everyone was crazy about him; my brother and I could have been jealous and resentful, but we weren't. Drew was just too cute to resent. He kind of brought us all together.

However it happened, Jan became my Mom. Now, her health isn't good; she's going through a terrible time in her life. Her bones are so fragile, and her balance is messed up for some reason. She can't do a lot of the things she loves to do; even simple things. It's difficult just to go out to a restaurant or anything like that. She's just waiting for her body to heal and trying not to hurt herself any further before the next operation. I'm hoping and praying that the doctors can help her.

So, Happy Mother's Day, Mom. You are in my thoughts and in my heart every day,

Friday, May 7, 2010

A weighty issue

I never thought I'd say this, but I'm losing too much weight. Since this time last year, I've gone from 135 pounds (a weight that I've been hovering around for several years) to 116 pounds and most of that decline has been in the last 4 months. Since I'm only 5'3", that's not a bad weight, but it's extremely unusual for me. The last time I weighed this little (since getting my full growth) was when I was 16 years old and recovering from 5 weeks in the hospital and 2 operations!

So what does it mean? I've had all kinds of lab tests, and I'm as normal as can be, except that I have vitamin D deficiency. I've since read that a fairly large percentage of Parkinson's patients (in one study 55%) are vitamin D deficient. I don't think that's the problem. Maybe my appetite isn't what it used to be, but I eat. I know I do.

Well, I go back to my GP next week, so I'll see what she has to say on the subject. I'm getting so tired of going to doctors; make me feel like I'm sick or something.

Sunday, May 2, 2010

Better today

The Sunnyvale Parkinson's Walk went very well! I managed the whole walk without too much trouble, and I raised $825 for Parkinson's research, thanks to my wonderful donors. I feel much better now, though very tired. I took a Baclofen and an Ambien last night and got a good, solid 6 hours of sleep; I feel like a new woman. The muscles are still clenching up a little, but now I've discovered that the Baclofen actually does work if I take it soon enough, and it doesn't give side effects. The migraine must have been a coincidence.

Anyway, I think the walk was good for me on several levels, and it has inspired me to step up my exercise routine a little. Now, let's see if I follow through... :-)

Saturday, May 1, 2010

What fresh hell is this?

It's almost 4:00 in the morning. I've been awake since 2:30, trying to relax the muscles in my body so that I can sleep, but it's no good. The dystonia that started in my left foot seems to have spread; my entire left leg is painfully tight, my right leg is not far behind. The muscles in my neck and shoulders are not listening to my commands either. I tell them to relax, and they won't; well, only for a second or two anyway. Even my throat muscles are painfully tight; it feels the way your throat does when you are about to cry, but worse.

The Parkinson's walk is today; what am I going to do if this doesn't subside? Get the cane out and hobble on, I guess. Oh well, at least I got a good solid 2 and a half hours of sleep...

About Me

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I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.