Saturday, July 24, 2010

Tetanus Blech!

This week has been a pretty busy doctor's week for me. I had a sleep study done on Monday because my doctor in L.A. was concerned about my extreme sleepiness. She thought that it was possibly narcolepsy. It turns out that I do not have narcolepsy, but that I wake up something in the neighborhood of 82 times a night. As such, I'm just not getting enough sleep. My sleep doctor is prescribing Ambien. I'm a little worried because of the possible side effects. I could start sleep walking or sleep eating. I eat enough without adding night time sleeping into the mix. Who knows where I'd end up sleep walking?! Geoff will probably end up picking me up from some all night bowling alley while I'm dressed in a teddy or footie pajamas. I'm definitely going to start wearing pj's I won't be afraid get caught in public in. I'm also worried because I'm hyper-vigilant. If I'm asleep, who is going to get Geoff and me out of here in case of a fire, or who's going to fight off unknown burglars? Geoff sleeps like a stone. We're just goners. It has me frustrated. I mentioned my concerns to Geoff, and all he had to say was, "Did you ever consider that it's thinking like this that's caused this sleeping problem of yours?" He's just no help. Seriously, I shouldn't worry so much about the side effects. The doctor told me that side effects were very rare.

I start school at Saint Louis University in about a month, and I had to go to the doctor for booster shots and a physical on Thursday. She gave me a tetanus shot. I hate tetanus shots! Every time I get them, I end up feeling like crap, and this time is no exception. I have a fever and pain in my back, knees, wrists, and of course, on the injection site. The injection site is swollen such that that it is something like four inches in diameter, and it is itches like a son of a gun. I've put ice on it and Benadryl cream. I have also taken Vicodin for the unbearable pain. I called the 24 hour nurse line that I have with my insurance company. She told me that I should not take Benadryl orally because of the Lyrica I'm on and the Vicodin I took. She recommended that I try cortisone cream. I will go out and get some later today.

In lupus news today. Cheers goes out to New York State Senator Joseph A. Griffo who co-sponsored a bill to support lupus awareness and education. The bill has passed in the legislature. Now he is pushing Governor Paterson to sign it. You can read more about Senator Griffo at NorthCountryNow.

That's it for me today Lupies. I'm going to ice my arm and try to sleep off the effects of this tetanus shot.

Have a lupie day!


Sunday, June 20, 2010

Love Simple

Today I'm feeling pretty down and out. I was up most of the night coughing and wheezing, and I woke up in full fledged pain. I've rubbed my joints down with Walgreen's ice blue gel, and I've started my regimen of prednisone, so hopefully I'll feel better soon.

I feel so guilty right now because I forgot to tell my husband happy Father's Day. Instead, I sent him out to get breakfast and didn't remember until I after I ate. I apologized, and he just smiled and said that's okay. I said, "I'm the worst wife ever." He said, "No. You just have lupus." What's even funnier is that I thought Father's Day was last Sunday and gave him his presents then. I'm just completely off, but I guess that's what he gets for marrying a lupie woman.

I just downloaded and watched the movie "Love Simple" through iTunes. I loved it. The main character is a woman with lupus who meets and falls in love with a guy who is taking care of his ailing father. The movie addresses some of the many stresses of being a woman with lupus and the guilt and anger associated with it.

It's definitely a great lupie movie. If you can, download it from iTunes by June 21st. Thirty percent of the proceeds go to the Lupus Foundation.

Have a Lupie Day.


Sunday, June 6, 2010

Sick 48 hours

I haven't been feeling too well for the past couple of days. The cause could be one of two things or two things. On Thursday night, I went to see Shakespeare in the park, and I was bitten about a dozen times by mosquitos. The bites puffed up pretty severely. In reading about mosquito bites and lupus, I discovered that many people with lupus have severe reactions to insect bites. Growing up in Los Angeles, I never really had to worry about mosquito bites, but now that I live in Missouri, it is something I need to think about when I head outdoors.

Friday morning, my daughter and I went out on our run together. I was wearing sunscreen, and it was early morning, but the sun really bothered me. I think my sunscreen might have been expired. Let this be a reminder to my half dozen readers out there to get new sunscreen.

Friday night, I was achy and had a fever. Yesterday, my ankles were really swollen, and I woke up this morning pretty stiff.

I told myself that I was going to stick to my exercise schedule no matter what. Today is my jogging day. Even feeling bad, I thought I'd just move a bit slower than usual. It worked out pretty well. I actually jogged farther than I did on Friday. The swelling actually went down some. I think the sweating from the exercise helped.

I read in the Nashua Times about Kevin Kalhori, a lupie who is cycling across the country to raise lupus awareness and money for the Lupus Foundation. Kevin's story is the same as most of us who have to deal with lupus. He has spent days stuck in bed. He's done the chemo and the steroids.
I've gone from being bedbound to running a bit over a mile. Even so, I cannot imagine bicycling across the country. I think I would be worried about all the things that could go wrong when dealing with something like lupus, but Kevin has faith in himself, and sometimes, that's all that you need.

If you want to follow Kevin Kalhori's travel across the country by bicycle, check out his Live Free and Ride blog.

Wednesday, June 2, 2010

Gaga Over Lupus

An article just came out on that says that Lady Gaga confirmed having borderline lupus. I wonder if this means that having lupus is going to become one of those celebrity fads like adopting children from foreign countries? Lupus can definitely use the attention. Many people suffer from lupus and if it helps foster awareness and understanding, that will be a great thing.

I'm pretty excited right now because I just completed my 39th day on my Wii Fit, and I feel tremendously better. Actually about a week ago, when I was using the Wii Fit running feature, I noticed that I had run over a mile and a half, and I thought to myself, "Hmmm. I wonder how that transfers to real world running?" I tossed on my athletic shoes, strapped on my heart monitor, filled up a bottle with water, asked my daughter (an avid runner) to tag along in case something went terribly wrong, and hit the running trails of Forest Park.

We took it very slowly. My daughter said that when you're starting off, it's better to run a little and walk a little, so we would run for a minute and a half and walk for a minute and a half. Today, I'm happy to report that I managed this for 1.888 miles, and this is my third attempt in a week. The first attempt I ran a little over a mile and the second attempt about a mile and a half. I'm very excited considering that I haven't run prior to these times in over 20 years when my doctors told me I couldn't run again.

I still have a bit of pain everyday, but I realized that pain is just a part of my life. I can either be in pain with a fit body or in pain with an unfit body. So no matter what, I drag my tail out of bed everyday to get on that Wii Fit.

My last post said that I fantasized about running a marathon. I think because of this, my daughter has it in her head that I can do this by summer's end. That is a bit of an ambitious endeavor I think. I will be happy if by the end of the summer I can run for a continuous five minutes without needing to take a walk break.

Monday, April 26, 2010

Exercising With Lupus

There's an article in featuring Jane Fonda who is promoting Saturday's World Fitness Day. Reading this article got me to thinking about my many attempts throughout the years to be fit. I often fantasize about being this fit woman who runs marathons, bicycles mountain paths, plays tennis, and goes white water rafting.

In reality, I'm lucky to get out of bed to make it to the shower many mornings. Morning is the single most unpleasant part of my day. The other night, I attempted to stay awake all night just to avoid the feeling I get when I wake up in the morning. I didn't quite succeed at that. When I wake in the morning, everything hurts. Then when I stand to get out of bed, it feels like I'm standing up from a steep fall off a cliff where I damaged every part of my body.

Yet given this, I still hold on to that fantasy, and I attempt to exercise everyday in order to be that fit, active woman. I don't succeed in exercising everyday. I wish I could be one of those motivational lupus people that you read about or see on the news who exercises everyday or accomplishes some monumental feat. It's just some days, I don't have the mental capacity to do it.

I was most successful when I had a trainer. I would call him up on some mornings and say, "I'm just feeling too achy today, and he'd say, "No problem. We'll just take it a little easier in your workout today." I'd mumble and agree. I hated him on those days, but usually in the end, I felt better.

I don't have my trainer anymore which means many days I find it hard to get motivated to exercise. I got a Wii Fit for Christmas, and I just opened the box this weekend. I love that thing especially the yoga feature. In yoga classes, I often felt self conscious because I'm not as advanced or fit as the others, and I often had to explain my many problems to the instructor. With Wii fit, I don't have to explain anything to anyone. I just work at my own pace.

Working at your own pace is very important with lupus. An overly excited trainer of instructor can send you into a lupus flare faster than your next push up. It's very important to listen to your body.

How do you motivate yourself to drag your achy body out of bed to exercise? Just keep telling yourself, "This will help me feel better." At first you may feel awful, but personally, I found that once I got conditioned, I felt great after exercise.

Have a Lupie Fitness Day!


Wednesday, March 17, 2010

It Might Be MS

So yesterday, I went to the doctor for a follow-up on the last visit I had where she put me on bed rest. I thought it would be a pretty routine visit because while I'm still exhausted and achy, I didn't expect much more than a medication adjustment (which I got by the way).

Well while I was in the doctor, I got one of these painful spasms that I've been having for years. I know I've mentioned them to doctors before but no one pays much attention because of all the other things I have going on. After I had the spasm, the doctor says, "How long has that been going on?" I respond, "I don't know. Years." She asks, "What does it feel like?" I respond, "I don't know. Painful! Like someone's electrocuting me."

"Have you ever had an MRI of your brain?"


"What did they find?"

"I was told it I had plaque on my brain. Typical lupus brain."

"Hmmm. I don't think so because lupus brain goes along organ involvement you don't have. I'm going to run some tests and send you to a neurologist."

And here's where you find me, needing to go in for tests and being slow about accomplishing that today. Last night I read about MS and it's symptoms. I do have a lot of the symptoms (spasms, tremors, ocular abnormalities, tingling, loss for words, talking very slowly to prevent stuttering), but I have symptoms that match half the conditions in the world, it seems. However, most markedly, I remember a time a month ago when I got home from school at about 10 o'clock at night, and I stepped out of my car and couldn't walk. I had to get help to get to my apartment. The next morning, I was all better.

The frustrating part of the whole thing is that I'm moving to St. Louis at the end of the month, but the doctor is telling me she doesn't want me to leave town until she figures this out. I started off this blog thinking, "I'm okay. No big deal. If I have MS, it doesn't make me any worse off than yesterday." From what I read, it's not hopeless. People with MS go on to live long lives. While the intellectual part of me knows all the facts and statistics, the emotional part of me is very sad.

I'm just tired of it all being so complicated. Anyway, I better get my tail in the shower. Later lupies.

Thursday, February 18, 2010

Bed Rest

Hi Lupies:

I've just been plain overwhelmed the past few months. With work, school, and the kids, I've just had absolutely no time. Whoever says that your job with your kids ends when they turned 18 lied.

It seems that since I couldn't slow myself down, the doctor decided to do it for me. I'm on bed rest for the next two weeks. Bed rest is tough for someone as hopped up as I am. If I weren't feeling so crappy, I'd argue with it. As it is, I'm sleeping over 12 hours a day. Hopefully, it will get better within the next two weeks.

From what I can tell, I have two things going on. A few weeks ago, there was a cold going around the office, and about that time, I got a sore throat and just started feeling tired and achy. While the sore throat has gone away, the tired and achy feeling never did. That's also about the time that I started spending every extra minute of my day sleeping. This pretty much likely means that I'm now in a lupus flare.

Also, I started having pain in my right side on Thursday. I saw my doctor on Tuesday, and that's when she put me on two weeks bed rest. She also sent me to the emergency room for tests to rule out appendicitis and kidney problems. My organs are fine. I have a dilated ureter on the right side. My doctor said that probably means that I just passed a kidney stone, and that's probably why I have the pain.

I still have the pain though. It woke me up this morning. I haven't taken anything for it because I don't like to wake up in the morning and take pain meds. I used my heated massager, and that helped some. Now, I'm just hoping to keep myself distracted until the pain becomes unbearable or goes away.

Part of me feels that I just pushed myself way to hard. In the next few weeks, I'm going to think about ways to simplify my life. I can't do everything. It's just not lupie friendly to be superwoman.

Take care lupies!