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

Black Friday

Hi Lupies:

It's Black Friday. That infamous day after Thanksgiving when Americans take to the stores and risk life and limb for bargains. If you have lupus, you probably look at this day with dread especially if you're on a limited income. You know that you should get out there and get bargains in order to afford presents for your loved ones, but it's cold, you're achy and tired, and you know you'll pay for it for the rest of the weekend.

Here's my advice: STAY HOME!

If you're reading my blog, that likely means that you have access to a computer. This means you can shop online. There are great Black Friday deals online. There are also deals that run through Cyber Monday. I work for PriceGrabber.com. We list stores who offer great online deals. It's the perfect place to go to compare prices on the popular Christmas gifts. If you're concerned about shipping costs, there are plenty of stores offering free shipping today. PriceGrabber also carries a list of many stores offering free shipping.

PriceGrabber.com isn't paying me to go on and on like this about the site, aside from my salary that is. I just think that shopping online is the lupie thing to do. Think about it. No standing in long lines until your knees ache. No carrying heavy packages that will make your fibromyalgia act up. No temptation from over salty mall food that will cause you to bloat up for days.

You can just stay home snuggled up in your fleece pj's and get all your shopping done for everyone. So far, I've picked up presents for my mother-in-law, my husband, and my daughter. It took me no longer than twenty minutes online. That's how long it would have taken me to find parking at the mall. I remember there was a day I drove around for an hour. It was enough to make me cry. Never again!

Happy Black Friday Lupies!

Stay Home.

Lupie Kat

Working With Lupus

Hi Lupies:

It has been a while. With life you sometimes have to let things go in order to deal with other things. I have been in school full time on top of my job, so that has me a bit stretched these days.

My husband Geoff is in St. Louis, so we are doing the long distance thing for now. I have to say that I am truly missing that support system. Aside from missing the company of my husband, he used to help me get around. I'm in pain more often now because I cannot take pain meds and drive. My doctor gave me cream to put on my joints. I'm going to try that out and see how it works for me.


I feel lucky that I am able to do my job. We just had mid-year reviews, and I performed pretty well. Take that lupus!

About.com recently reported a study that shows 92% of patients with lupus were no longer working four years after diagnosis. It's tough to work with lupus. Especially if you have a job that requires lifting or moving. I was at the shoe store about a week ago, and I had this salesperson who was moving very slowly to get my shoes. I was very familiar with the way she moved because I've been in that type of pain. I could not imagine having to stand up and chase after shoes all day with lupus. I think I would be telling customers, "Your shoes are in the back room on the left. I'll be waiting right here!"

How have I managed work all these years with lupus? I forgive myself, and my job is very flexible. My boss understands that sometimes I'll have to work from 9:30 to 6:30 instead of 9:00 to 6:00 because sometimes my body is just going to take a little longer to warm up in the morning. I make sure that my joints don't get cold at work. I dress warmly, and I keep a heating pad at my desk. If laws allowed, I'd have a space heater too. If you can use a space heater a work, make sure you do. It really helps!

I arrange my doctor's appointments such that they make the least impact on my workday as possible. That means either in the morning or evening. Never in the afternoon unless it cannot be helped. That just eats a huge chunk out of your workday. Sometimes I see lupies sacrifice doctor's appointments for work. Health maintenance is imperative to staying healthy with lupus, so if you can, never miss an appointment. Take care of all health problems asap so that they don't affect your work performance.

Working can be a challenge with lupus, but it is possible. Especially if you have a job that isn't physically demanding and allows for flexibility.

Take care Lupies.

LupieKat

Doctors Week

Actually, Doctors Week is every week for me it seems. I've been non-stop busy for the past couple of weeks. Geoff and I took Aja up to college this week for orientation, and while we were up there, Geoff's step-father passed away, and we ended up taking him to the airport and driving the 600 miles home without him.

Aside from being sad about the loss of such a wonderful man, I'm upset that I couldn't make it to the services. Geoff wouldn't hear of it, and he's right. I would have done nothing but send myself into a flare if I tried to push myself in order to make it to Virginia in time for the funeral.

Today I'm going to the cardiologist for my check-up. It's good timing because it feels like my heart has a life of its own lately. Tomorrow I have a colonoscopy. I've been having blood in my stool and chronic diarrhea, so the doctor has to check that out.

Since Geoff is out of town, Aja is going to be my ride from the colonoscopy tomorrow. I never understand what the doctor tells me after surgery. Usually Geoff is there to ask questions. I guess that I'm going to have to try to catch up with my doctor when I come back to my senses.

I always try to end with advice relevant to my experience, and I'm having a hard time coming up with something. Oh wait, I got it! I used to have a doctor who used to give me a colonoscopies while I was wide awake. That was the most miserable experience ever. The first time my new doctor gave me a colonoscopy and told me that I would be put to sleep for it, I wanted to go and punch my old doctor in the face. If you're ever offered a choice between pain and comfort, choose comfort.

Take care Lupies.

LupieKat