Lupies Need Friends

When I was first diagnosed with lupus, I was rather depressed, and I became withdrawn. It seemed that the worse my symptoms became the less people I wanted around me. Today, I know that wasn't the healthiest thing for me to do.

I spent years and years virtually shut away from my friends. In the past year, I'm making efforts to reconnect, but it's pretty hard work. In the best of circumstances, I'm a shy person. Now, I have lupus insecurities to add on top of that.

It's a lot of work to open yourself up, but I keep trying. Yesterday, I was in the pool at my apartment complex, and I met a woman who just moved in. It was a tremendous effort to make conversation at first, but I started to feel more comfortable after a while. Hopefully, I'll run into her again, and we can talk some more. The thing is, if you feel lonely, that leads to the depression, and if you're depressed, you likely won't feel better.

What Makes Me Stay Home From Work?

If I decided to stay home from work whenever I'm in pain, I'd never go to work, so I often have to push myself to get going. There are certain symptoms, however, that will make me stay home.

1. Confusion. Sometimes, I feel so bad that I'm easily confused, and I make mistakes that if I were feeling better I wouldn't make. Like yesterday, my boss was asking me questions, and my answers made absolutely no sense to him or me. When I put Los Angeles on a FedEx envelope I knew was headed for New York, I knew it was time to go home.

2. Fever. If my temperature goes above 99.1, I head home.

3. Diarrhea. This symptom is not pleasant for me or anyone around me, so I stay home if my stomach is having issues.

4. Extraordinary pain. As I said, I'm in pain practically everyday, so I only stay home if the pain is so bad, I can't move. That pain usually involves my neck, back or head.

Once I've made the decision to stay home, I have to remind myself to get rest. That means no t.v., no internet, no reading. Well, none of things in excess anyway. I just have to remind myself not to go overboard. That's often hard for me, but it's the only way to feel better. With lupus, you have to remember to take care of yourself.

Driving Me Lupie

I've already mentioned how I don't drive much anymore because it hurts to drive, and I don't feel comfortable driving with the meds I'm on. I also don't like riding in a car for extensive periods because the bumping around is painful. I'm six feet tall, and my legs get cramped up sitting for long periods in a small, confined space.

Because of this, sometimes I'll ask my husband to take me to car dealers to see if I can find the perfect, comfortable car. I found it this past Saturday. It was the Audi S8. That has to be the most comfortable car in the world. Plenty of leg room. There was an extender on the seat to give my legs extra support. The seats were very supportive without being too firm. We asked how much, and for the low, low price of $92,000.00, we could have driven off the lot with a brand new, comfortable car. Suffice it to say, the car is still at the Audi dealer.

Ninety-two thousand dollars! Oh my gosh. It amazes me that there are people in this world who can or even would spend $92,000 for a car. For half that money, I can hire two strong college students to carry me around in a recliner for a year. I'd probably need more than two. I'm kind of heavy.

After we left the Audi dealer, we went to the used car dealer to check out the used cars. Just for kicks, we sat in a Mini Cooper. That car was more comfortable than I expected, but not comfortable enough for me. While there, I did find a used Audi All Sport. It was a reasonable price and it was very comfortable. I'm going to think about it and research it. My husband was concerned about gas mileage, but I think if it works out, I'll be driving around in a used Audi.

I'll be living lupie in luxury.

Who needs sleep?

I do apparently. When my doctor isn't reminding me that I need to take my pain meds on a regular schedule, he's telling me that I need to rest. The past few days, I've been suffering because of lack of sleep lag. It started Wednesday night when I couldn't sleep because my son figured that 1:00 AM was the perfect time to cook a full meal. That was followed shortly by the dog's need for attention and a walk. All said, I ended up in bed about 2 AM, and I was up by 6 to get ready for work.

Then a friend invited me to the Dodgers game. I knew that I was tired, but I have a hard time saying no to free Dodgers tickets, and on the Field level 6th row! Forget about it. I think I actually forgot that I had lupus for all of 10 seconds as I accepted the offer. The game was good, but high scoring and lasting longer than expected. Got home at about Midnight on that one. I was up and ready for work by 9 AM though. If my husband didn't wake me up, I'm sure I would have slept the day away, but he had a meeting. As it was, I caused him to be late.

Now, I've really done myself in with the bad sleep schedule because I have fibromyalgia on top of the lupus, and now I'm tired but I can't sleep. Too much pain, I suppose, but it's miserable.

It will settle down eventually. It always does. I'll call this weekend my recovery weekend.

The World is Much Better When the Meds Kick In

Mornings suck. I wake up achy every day, and I start with the same routine. Wake up, take Nexium. Wait for Nexium to kick in. Eat food, take more meds. Exercise, go to work. I usually take a pain killer sometime between the time I get in the car to go to work and when I get to work. It usually kicks in about an hour afterward. When the pain killer kicks in, I usually have about a half hour of absolutely no pain. When that happens, I get this feeling of relief, and it doesn't hurt to walk anymore.

I always have a problem taking my pain meds. I take them less often than they're prescribed. The doctor tells me that I cause myself more pain when I do this, but I don't like to be totally dependent on pain meds. Also, I honestly forget to take them until I'm really in pain.

Also, when I take them anywhere close to the schedule I'm supposed to keep, I start to feel sick to my stomach, and I usually end up skipping a dose anyway. I think I'm going to talk to my doctor about it.

I've been getting quite a bit of e-mail lately from those of you out there dealing with lupus. Thanks for writing. Your words help a lot.

Friends and Family Can Make Me Sick

I mean that more literally than figuratively, of course. I'm on quite a few medications that compromise my immunity, and if there's a bug going around, and I catch it, it can make me sicker than the person who gave it to me. A few years back, I caught the flu from a friend. As a result of that, I got a yeast infection in my esophagus that lasted for several months. I lost fifty pounds, and the doctor worried that I wasn't going to get over it, but luckily, I did.

Because of that experience, I try to avoid people who are sick. My husband Geoff is pretty hypervigilant about it. He actually yells at people to stay away from me. I try to tell him to calm down, and he yells at me. He usually says something like, "I'm not going to lose my wife because some careless person wants to hug you." So I just shrug and leave him to his yelling. I think it helps him have control over something where he has very little.

I bring this up because my brother in law, Ron has come into town from Virginia to stay in L.A. for a month. He's taking some air force class or another, and he wanted to visit. It was great. We walked up to the beach for a bit and then we went out to dinner. After that, Ron and Geoff and the kids went out for ice cream, but I walked home because I was tired. Sometime during the evening Ron asked me if he could borrow my Chapstick and I said no because I don't share personal items with people because of the germs. I felt bad at the time because I felt like I had a germ phobia. But then after they came back from ice cream, Ron tells me that he's on the tail end of bronchitis. Geoff says that Ron told him this at ice cream, and he's already yelled at him. I was actually surprised that Geoff let Ron back into the apartment after ice cream!

After Ron told me about his bronchitis, I said, "I'm so happy I didn't loan you my Chapstick!"

With lupus, you really have to be careful with friends and family. They are the ones who will give you a bug before anyone else. I think it's because of the comfort level. It kind of slips their mind that you are immune compromised, and they just don't think about it. Luckily, I have Geoff to think about it for everyone in my life.

My lupie job

I have a great job. I work as a paralegal at PriceGrabber.com. It's a dot com in Westwood, Los Angeles. I'm the sort of person who always has to do something. I've been at PriceGrabber for close to a year now. I didn't think I'd be able to handle the schedule. I honestly thought that after a few months, I would tire out and end up back to part time work or at home.

Luckily, I work with a very understanding attorney. He's the greatest actually. About a few weeks into my job, my doctor ordered infusion treatments two times a week for three months. I thought that would be it for me, but Carlo was great. He said, "The important thing is that you feel better." He's always so supportive. He's sympathetic without pity, and that's what I appreciate most. Last week, I walked into his office, and he said, "Do you feel okay?" I said, "No." He replied, "I didn't think so because you look messed up." And we both laughed.

Sometimes I do feel self conscious about my condition. Last Thursday we had a company wide meeting in a theater at a museum. I had to find out what sort of seating was available before hand because a two hour meeting can be pretty painful if the seating is uncomfortable. Then I had to make sure to have a bottle of water for the pills I was due to take in an hour. Also, the dry air gives me coughing fits.

The hardest part of the whole thing is when I feel self conscious about things that I can't do, like walking up or down stairs. My knees can barely handle that. I was seated in the back row because to sit anywhere else would mean to deal with stairs. When that sort of thing happens, I usually have someone who either asks me what's wrong or thinks I'm being antisocial.

It didn't make things any easier because I work with my husband, and he shows up at the meeting, passes me by, heads down the stairs and starts looking for me halfway down. I can tell that he's trying to figure out where I am, so I start calling for him. He turns around and says, "There you are. What are you doing up there?" I give him the evil eye. He slaps his forehead and say, "Sorry. I forgot." At which point, I get about half a dozen people saying, "Yeah, what are you doing up there?" I didn't get a chance to explain because the meeting started immediately thereafter.

Aside from the minor inconveniences such as that one, I love my job. I do feel tired a lot of the time, but I enjoy the meaning of purpose it gives me. I appreciate that when I don't feel well, my boss understands it. I appreciate that noone ever makes it look like a chore to deal with accommodating my needs. I've never had that in a job before. I'm glad I finally found it with PriceGrabber.

Another great thing about my job is Melinda. She read my blog and noticed that I liked lemon cookies and baked me a batch of the best lemon cookies I've ever had in my life! Thanks so much Melinda. I also want a diamond necklace, a new car with comfortable seats, and hot looking wig!

Forgive Yourself for Broken Promises

Okay, so after I promised myself that I would write in blog no matter how badly I felt, I stopped writing because I felt too bad to tell others how bad I felt. I can't go back and change it, so I'll move on and try better next time.

I've been feeling pretty wiped out since July 3rd, and I can't wait until my workday is done in order to go home and go to bed. My next vow will be to write about how I deal with working with lupus, so look for it soon.

The tongue has it

This morning I woke up with ulcers in my mouth. This is the one symptom that makes me slow down and stay in bed because if I don't I just get worse. If it gets worse, I'm back at the oral specialist, and he's examining my tongue for suspicious lesions, and I'm not up for that emotional strain. It's just one thing I can't push myself through. That means that today, I'll do a little work from home and spend the rest of it looking out my window and sleeping.

Yesterday morning was a very tough morning for me. For the past week, I've been pushing through a pretty good flare, and Saturday, it all caught up with me. No matter how I feel, I try to force myself to get up at least once in the morning, so yesterday I got up and went to the hot tub in my apartment building to soak. That helped a little bit, but I still wasn't quite better. I didn't push myself too hard for the rest of the day. I just rested a bit and watched t.v.

On my LivingLupie.com web site, I list reasons to get out of bed in the morning, and I really push the concept that you have to force yourself to get moving sometimes, but that doesn't mean that you shouldn't rest when you need it. With lupus it's important to keep that balance between rest and exercise. If we stay in bed too much, it's not good, and if we push ourselves too hard that's worse.

Sometimes it's hard to figure out if I'm just getting the rest I need or if I'm just giving in. I pretty much measure my day. If I'm going to have a busy day, I'll take the extra time and rest a bit more. If I have nothing going on for the day, I will force myself to get up and exercise a little bit.