I'm Disabled. So What!

I often try not to think about lupus being a disability up until the point I get that note from my doctor saying that I have to stay home from work for a few days and rest, or those other times when my doctor gives me a note to get a disability placard for my car because I can barely walk ten feet.  There are also times when I need a wheelchair to get around because the pain is too much to bear. At these points I feel like the only disabled person in the world.  At some point during my episode of self pity, I realize that as disabilities go, I'm pretty lucky.  All my body parts still work.  They may be swollen and painful, but they are working.

I'm thinking about this on Oscars night because of the Disability Advocates who are protesting the Humanitarian Award given to Jerry Lewis.  Advocates believe that Jerry Lewis portrays the disabled as pitiful and pathetic.

My mother used to tell me that blacks have to work twice as hard to be considered half as good.  As I grew up, I realized that black women have to work three times as hard to be considered a third as good.  Now, I'm thinking a disabled person has to work four times as hard not to be considered pathetic.

My boss Carlo (who abandoned me to go work for Yahoo!) used to treat me like he was one of my brothers.  When he saw that I wasn't feeling well, he'd crack these insensitive jokes.  Oddly, this helped me feel relaxed about my problems because I knew my boss treated it as no big deal.  He knew that I could still do my job no matter what was happening physically.

I honestly just want to be normal, but that's just not the case.  I would like to go out for drinks with friends, except I don't drink.  I'd like to order a non-alcoholic drink without being questioned as to why I didn't and have to answer a myriad of questions as to why my lupus medications don't allow such a dally into alcohol, and then listen to how other people with lupus drink away with no worries.  I'd like to be able to perform simple tasks without people trying to take the responsibility away from me.  I'd like to be considered for promotions without wondering if senior staff will question my health and abilities.  I would love to climb a flight of stairs without my husband asking me if I'm going to make it.

Anyway back to Mr. Lewis' Humanitarian Award.  Mr. Lewis is quoted as saying, "You don't want to be pitied because you are a cripple in a wheelchair? Stay in your house!"  Mr. Lewis may be a bit insensitive in his statement here, but unfortunately, he has a point.  Whenever I'm in a wheelchair, I do catch the eyes of people staring at me in pity.  I guess it's just human nature.  I think this pity puts a duty on the disabled.  We have to prove to others that we aren't to be pitied.  That even though we have certain physical issues, we can move beyond them and be treated as equal members of society who shouldn't be pitied any more or less than anyone else.  It resembles the same fights that African-Americans and women have to make.  I have to say, "I'm black.  So What!"  I've also said (most of the time to my brothers), "I'm a woman.  So what!"

Now with these issues of the pity I receive for having lupus, it's up to me to stand-up (or sit in my wheelchair) and say to Mr. Lewis or anyone else who tries to pity me, "Yes.  I'm disabled.  So What!"

I guess that's it for my lupie soapbox today.

Have a Lupie Day.

LupieKat

Too Lupie, Be Happy

I'm happy today, and it seems to make me feel good. I say this because for the past week. I've been feeling horrible. I thought I was in a flare because I woke up with a sore throat, and I felt like I'd been hit by a truck. I was achy all over. I didn't have a fever, and I had no other symptoms. I stayed home from work last Thursday and Friday, and I've been dragging myself around all week and over sleeping every morning.

On Tuesday, I discovered that there were quite a few people at work who had the same symptoms I did, and it was a relief because now I know that it isn't a flare, just a nagging bug. Once I realized it was a bug, I figured that I would get over this thing eventually, and just take it easy.

On Wednesday nights, some women friends and I play poker. I had asked Geoff to make sure to go home early to see to the kids. I know my kids are older, but my daughter is a teenager, and she still needs guidance from time to time. Unfortunately, Geoff didn't go home, and I ended up dealing with the kids more than I should have for my night off. (Silly me. Moms don't get the night off.) This resulted in my going home and yelling at my family about being self sufficient and responsible.

Afterward, I went to bed crying about how I was an awful mother. I was definitely having a roller coaster of a night. Because of this, I woke up Thursday feeling horrible. I was tired and achy again. Nonetheless, I picked myself up and went to work, and I woke again today feeling tired and achy. I also couldn't get my wedding ring on because my fingers were swollen.

When I got into work, I decided to drink some Yogi Tea Peach Detox thinking that would help with the swelling. My friend at work, Rachael, has a tea kettle at her desk, so I went over to ask her for some water. Rachael was in such a great mood, somehow her mood rubbed onto me, and I feel better now. I do still feel tired, but the general achiness is much better. Or maybe it was the detox. I think it does have a lot to do with mood because I am feeling pretty happy. Sleepy, but happy.

Therefore, I want to emphasize the importance of happiness. First, I want to say that lupus is tough. It can come along with a variety of psychological symptoms, even the steroids have been known to cause severe mood changes and panic attacks. Because of this, the concept of happiness is difficult for people to comprehend at times. Nonetheless, we need to work at being happy, and believe me, happiness is work.

1. Find happy people. As I mentioned earlier, Rachael's happiness improved my mood. We should all endeavor to be around happy people to make ourselves happy.

2. Read happy books. Find funny books at the bookstore or the library. I used to really get a kick out of Irma Bombeck.

3. Watch funny shows. And I don't mean ridiculous reality shows where the people are doing things so stupid it's funny. I believe those things actually tear away at your emotions instead of build you up. Try watching situation comedies or stand-up comedians.

4. Funny movies. Nothing cracks me up more than "There's Something About Mary".

5. Think happy thoughts. Try to remind yourself of the good things in your life such as family and friends. If you don't have family or friends, think of the things you have within yourself, like your brains and your fortitude. Even if all you have is a roof over your head, be grateful for that. If you have nothing at all but your life, be happy that you have a life with the potential for great things. Everyone who's living has that.

Well, I hope I've left you with enough happy lupie possibilities. Have a lupie day.

LupieKat

Resolutions

Since my birthday is two weeks before New Year's day, I usually start my resolutions on my birthday. This past birthday, I turned 40, so it was important for me to do something special. This year I resolved to celebrate life and be happy. In going along with this theme, I went to Disneyland, the Happiest Place on Earth. As you can see from the pictures, I was very happy. Also, in keeping with this theme, I decided that I was going to spend more of this year focusing on my happiness. With my son turning 21 this year and my daughter graduating high school and heading off the college, I felt this was a good time to make focusing on me my goal. Sometimes, I feel like I've spent my whole life being a mother. My mother was diagnosed with cancer when I was ten years old while she was pregnant with my youngest brother Victor. He was my responsibility. Then I had started having kids at 19. My whole focus has been my kids, so I never did the things that most twenty year olds did, so with this birthday, I decided fun would be my theme.

My husband and I went out last night, and when we got home at about midnight, our son asked my husband about dinner. My husband told me it took all of his control not to yell at the boy. I just laughed and shook my head. I know that I often say to my son, "Julian. You realize that when I was your age, I was feeding not only myself, but you! Get your own dinner. You're a grown man." Usually, he gives me this expression of "Oh yeah. I forgot. Sorry." and he shrugs and heads off to the kitchen.

In my son's defense, I spend many nights cooking for them, but he knew that we were going out last night. We actually invited him to join us, but he begged off. You'd think that since we weren't home at dinnertime, that he'd figure out that he was on his own for dinner, but nope. Hopefully when my son goes off to college in September, he won't forget how to feed himself.

Have a Happy Lupie Day!

LupieKat

Staying Healthy When Everyone Around You is Not

It's flu season, and this can be a very trying time for a lupie. The flu can send you into a flare or can make you sicker than the average flu sufferer. It may be tempting to lock yourself in your house until the flu season passes but for many of us, that's just not realistic, so here are a few things I do to keep myself flu free.

1. Stay away from sick people and the areas where they congregate. At work, I watched everyone in my work area come done with the flu in a matter of a few days. I was the only one who escaped it. I kept my distance. There was a point after New Year's when they were all sitting in a circle talking about their holiday. I stayed on my side of the cubicle and yelled comments over the wall. Also, I stayed out of the kitchen. Almost everyone at work goes into the kitchen, so your chances of picking up something there are pretty high.

2. Use hand sanitizing solution often. I use it whenever I return to my desk. That way if I touched something while I was away from my desk, I'm protected.

3. Touch no one. I have been taken down many a season by hugging someone only to pull away and experience their germ infested cough heading in my direction. At the most, just try to shake hands and then use your hand sanitizing solution as soon as you can without seeming rude. I usually tell people a little white lie to the effect of, "I think I may be coming down with something." That usually keeps them off me.

4. Don't be nutritionally deprived. If you take vitamins, make sure you take them. At the least, eat a well balanced diet. It helps to keep your immunities up.

5. Exercise. Exercising helps your body fight illness. If you exercise at the gym, make sure you wipe down machines to avoid germ contact.

6. Sleep. Most importantly. Get plenty of rest. Lupies need more rest than most, so make sure you have a well rested body to fight off those germs!

7. Don't stress. Many seasons I've let myself get really upset about something only to wake up the next day with the flu. Take a deep breath. It's usually not as bad as you think it is at the time.

Here's hoping you have a healthy lupie flu season.

LupieKat

No Empathy From Me

I spent the past week sick in bed. This had me a little blue because I'm going to be 40 on Thursday. There are a few things I wanted to do for and by my 40th. I wanted to surf by my 40th birthday, which I had hoped to do this past weekend, but I was too sick. I also plan to celebrate most of the week, and I plan to go to Disneyland.

My body, on the other hand, had other ideas. I woke up last Thursday, and I couldn't put weight on my feet because the pain was so bad. I ended up going to my rheumatologist and she gave me an injection of steroids. She said I should start to feel better by Monday. Of course, I was Ms. Negative, thinking that it wouldn't work, and I'd feel that way for my birthday.

Geoff has a rowing machine, and he's really excited because he's trying to row for the Concept 2 Holiday Challenge. In this challenge he gets a tee shirt if he rows 200,000 meters. I know he loves his rowing machine, and I know he's very excited, but I don't want to hear about his aches and pains when I'm feeling so miserable. I know that it's wrong of me to feel that way, so I try my best not to be moody with him when he complains.

At some point over the weekend, he was talking about his rowing and how he got a blister on his hand. (I should point out that when my husband gets a paper cut, I hear about it half the day.) Anyway, he was pointing out this blister and describing the pain it was causing him, and I was thinking to myself, "You've got to be kidding me! I can't walk here!" I think what actually came out of my mouth was something to the effect of "Uh huh. I see." He responded, "Are you upset with me? Your toned seems resigned." I said, "I don't feel well Geoff." He then said, "Are you sure?" I then told him that honestly, I didn't want to hear him go on and on about his blister. That I was miserable and couldn't walk, and a blister on his hand seemed minimal in comparison. Especially since he got it rowing several thousand meters in a day, when I can't even think about standing up. He responded, "But the blister hurts." Then he said, I'm sorry you're not feeling well. I know it must be hard on you, but the blister really does hurt. I just rolled my eyes.

Empathy is pretty hard for me when I'm not feeling well. I know that's hard on my family because Mom/Wife is supposed to be empathetic, but my children are grown and nearly grown. My husband is definitely grown. They need to suck it up. I often do. As you can see, I'm not doing too well on the empathy thing right now.

Anyway, my rheumatologist didn't lie to me. I was able to walk on Monday. I'm still moving a bit slow, and I feel run down, but I'm hoping to be better by my birthday. Overall I feel lucky to be here to complain.

Have a lupie day.

LupieKat

Keeping Warm Lupie Style

I was going to write about how Geoff and I celebrated our 17th wedding anniversary this weekend, but then I read a post about a cold lupie and decided this post would be better served talking about keeping warm.

I think lupies are more susceptible to pain this time of year because it is so darn cold. It is very important to keep joints warm especially those hands and feet. Here are a few things I do to keep warm.

1. Wear gloves. Especially when you go outside. If you find that your hands get cold at work, and you do a lot of typing, get gloves and cut the fingers off. I also put a heating pad under the wrist that I use to mouse. For some reason that wrist gets cold. Also, when you're shopping wear gloves to help you grab things out of the freezer section. Especially if it hurts your hands to touch cold things.

2. Use a blanket. I carry a blanket with me practically everywhere I go. I used to feel really self conscious about it at work, but now it seems like I've started a trend because others are doing it too!

3. Wear booties, socks or slippers. I have slippers under my desk at work that I wear when I'm going to be sitting in one place for long periods of time. I also keep an extra pair of warm socks in my desk.

4. Sweaters are your best friend. Sweaters are great, especially at work. You can toss them on without looking completely inappropriate.

5. Get moving. Moving around vigorously is the one thing that helps the most when my joints get cold. Take a quick lap around the office to warm things up if need be.

6. Heating pads. Heating pads are wonderful. They can be a quick fix to cold areas of your body. There are also heating pads that you can toss in the microwave if you are short on places to plug in.

7. Wear a hat. My husband constantly reminds me that most of your body's warmth escapes through your head, so make sure to wear a hat.

These are my lupie methods to keeping warm. Feel free to add your own. The picture above is of me in Palm Springs at the top of the aerial tramway. I'm dressed very warmly. I'm also wearing sunglasses to protect my lupie eyes.

LupieKat

T'is the Season for Infusions

I started my first infusion treatment yesterday. I am relieved that it took the nurse only two tries to find a vein. I can tell by the way she treated me that I didn't treat her too warmly. Note to patients: Try to be bright and upbeat no matter how terrible you feel. If you aren't, the nurses take it out on you. In my many years of medical interactions, I've found that the nurses treat you better if you try to be peppy.

Yesterday, I really didn't want to be peppy. I hate infusions. I was close to blowing up at Geoff but he backed off before it was too late. (I think he's finally learning.)

In case you're new to my blog, I have to get iron infusions from time to time to keep my iron stores up. I'm allergic to iron infusions, so the whole experience makes me miserable. In order to get the infusion, I take it with steroids and benadryl. It makes me sleepy and feel sluggish for the day. Additionally, I'm in pain. I get pain in my chest and pain in my joints.

A good thing about this round of infusions is that I have a good set of people to give me rides home. That was the biggest challenge with my last set of infusions. I've been working on developing friendships and support. This helps me feel less alone in the whole procedure.

Unfortunately, my favorite driver has moved away to the Midwest. I really do miss Melinda. She needs to get out of that snow and come back to the warmth and love of California.

Take care and live lupie.

LupieKat