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.

Gaga Over Lupus

An article just came out on LimeLife.com 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.

Exercising With Lupus

There's an article in USAToday.com 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!

LupieKat

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?"

"Yes."

"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.

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!

LupieKat

Lupus, Pregnancy, and Raising Kids

Good day Lupies. I have to say, I'm enjoying this very long weekend. I don't want to leave my apartment. I just want to be lazy and lie around enjoying the quiet of my home and the beauty of the day. It has also been a great opportunity to catch up on the latest lupie news.

This morning I read an inspirational story about a fellow lupie by the name of Madam Low Kwee Yoong and her successful attempts to have children while dealing with lupus. She talks about her many trials and tribulations with in-vitro-fertilization, but after it all, she now has four beautiful children.

I had my children before I was diagnosed with lupus, but I now look back at some of the issues I had in my pregnancy, and I can point those issues to possible lupus symptoms. When I was pregnant with my daughter, I broke out into a rash on my forearms, and the doctors could not figure out what on Earth was going on. Now I think, "lupus rash".

Fortunately, I had my kids when I was young and before I was diagnosed. I think otherwise, I would have hesitated. Even though there really isn't any significant lupus risk for me to have kids, I would have worried. The average pregnant woman is filled with worries about the health of her unborn child. Imagine the worries that a woman with lupus goes through.

One worry is likely what effect lupus medication will have on an unborn child. These worries are often greater than necessary. There are certain lupus medications you shouldn't take if you are pregnant or plan on getting pregnant, such as certain chemotherapy based drugs. It's best to communicate with your doctor in order to know for sure what medications are safe. Be heartened that many women with lupus successfully go through pregnancies to have healthy kids.

I think the key is working very closely with your doctor to make sure you're in a healthy place in order to carry a baby.

Another concern I would have had would have been just the physical and emotional energy it takes to raise a child. My children are both grown now, but for many years I worried about the effect that lupus has had on my family. There have been Christmas dinners I haven't cooked, school events that I've missed, and things I just didn't do because I was too sick to get out of bed or leave the hospital.

In the end, I have raised strong minded and empathetic children. My daughter is amazing. She has taken care of me more times than I can count. She is smart, brilliant, and independent. I cannot imagine my life without her.

My son is bipolar and schizophrenic, and I have to say that there have been times when dealing with his issues has exacerbated my symptoms. I think that it has been particularly challenging to be there for him because of the issues I face with lupus. I have had doctors recommend finding a place to deal with him in order to take care of myself, but I couldn't bring myself to do that.

I give it my all, and I have to depend on my husband tremendously to deal handle issues. However, I must say that considering the issues that my son has, overall he is a great son. He is caring and considerate. Also, many parents with bipolar and/or schizophrenic children often worry about drug or alcohol abuse. I've never had to worry about that with Julian.

In the end, I had to accept that I wasn't going to be the perfect mom, but that's okay. I love my kids as best I can, and they know that they're loved and that's all that's important when you come down to it.

Have a great new year lupies!

LupieKat

Leaving Dimes on the Elevator

Today was sort of a rough morning. I'm a bit stressed about the final projects and papers I have due for class this week, and I haven't been sleeping much. When I woke up this morning at 6:30 after going to sleep at 2:00 AM, I was in a bit of pain. Moving around helped a bit, but I still had a rough time moving around. The all around pain is just about five feet shy of manageable. My hips were in horrible pain when I left for work.

After I left my apartment, I got on the elevator headed to the parking structure, and I saw a dime on the floor. I remember as a child, I'd always be excited about finding a coin. I often considered it to be a lucky day if I picked up that coin and held it with me for the day. However, today, as I stood on the elevator, I looked down at the coin and thought, "I'm really in a lot of pain, and I don't want to pick it up. But it's money. You shouldn't just let money sit on the ground if you see it. It's wasteful." Then I thought of the value judgment of picking up the dime versus what the doctor's bill would be if something went wrong in the process of my picking up the coin. Then I got sad. Seriously, so much thought shouldn't go into picking up a coin.

But that's lupus. You put a lot of thought in virtually everything you do in a day. What will happen to my sugar or salt level if I eat that? Can I really walk that far? Do I need to wear a hat today? Should I go to that party during flu season? Can I really stay up late tonight? Is this fever high enough for me to stay home? It just goes on and on.

Here's hoping for a better mood.

Later Lupies.

LupieKat