what's the point?

It's been a year since I've officially been diagnosed with lupus. I wish I could say that everything is great now but that wouldn’t be true. Things are a lot better than there were last November but worse than they were 3 months ago. When I first was given the diagnoses I fought the drugs. I’ve taken the steroids before and I don’t like the side effects. But after 3 months of 3600 milligrams of ibuprofen and still constant pain I gave up and started to take the steroids (40 mg) in a very high dose. I took that dose for almost 6 months before I switched doctors. (A much needed decision for my sanity). My new doctor is much better, shorter wait times, easily accessible and close to work. She also understood my dislike for the steroids and has been working with me to find alternative medications that will control the pain but will allow me to stop taking the steroids. She has been backing me down to 15mg now with the hope of soon dropping down to 10mg and then maybe off them all together. Great news right?? It’s what I’ve wanted from the first day I started taking these awful drugs. It turns out not so great. Since I’ve been down to 15mg of steroids the pain has come back. I’ve noticed an increase in joint swelling, muscle pains and aches, inability to sleep through the night and an overall lack of energy. I have trouble falling asleep, when I do fall asleep I can sleep for10-12 hours yet I wake up feel exhausted and I often have trouble waking up. Today I parked at the end of the parking lot because it’s the holidays and there’s no parking near the front of the store. Yet as I hobbled to the store I found myself thinking I need a handicap parking permit because I can’t walk. I’m 27 years old, I shouldn’t need a handicap permit, I’m not disabled. What’s wrong with me? Yet all the same I wish I had the stupid permit so I wouldn’t have to hobble across the parking lot.


It seems the solution is to up the dose of the steroids again. But then I’m stuck with the side effects. Extended taking of steroids can among other things increase the risk of Osteoporosis. The doctor has also up some of the other drugs to allow me to lower the steroids dosage. The side affect of one of the new drugs includes nausea. So in addition to my daily pain I also usually experience decent amounts of Nassau in the mornings. (If this is anything like what pregnant women experience as a part of morning sickness it’s yet another reason why I’m not having kids). All of this leaves me wondering what the point is. The medicines help but the side effects suck. But nothing is a real fix. I’m either screwing up my body with all the drugs or I’m living in pretty much constant pain.

I’ve also found that in the last few weeks I’ve become a less pleasant person. I’m tired, easily irritable, and generally unpleasant to be around. I don’t want to be around people and when I am I really just want to smack most of them. (Great company right). But since I can feel my personality changing and I don’t like it I find myself looking for a way to change it. So I’ve come up with what I believe will be a workable solution. I’m going to run the San Francisco Marathon at the end of July. I mean training for a Marathon in painful enough by itself but you add to it training to run in the hills of San Francisco and that’s got to inflict incredible amounts of pain of one’s body right? I figure that if I’m going to be in pain all the time it might as well be for a good reason. And if I hurt from training for the Marathon maybe I’ll forget the pain is from the lupus instead. OR at least I won’t be able to tell which one is the true cause of the pain. Of course all the medical websites say running (especially a marathon) is one of the worst types of exercise for people with lupus but when have I ever actually followed a doctor’s advice. At least when I cross the finish line in San Francisco it will be worth the hurt. As opposed to now, when there isn’t a good reason for the hurt.

Of course because I’m not a total idiot I’m waiting to officially sign up for the marathon until I get clearance from my doctor, who I don’t see again until the middle of January. But just because I don’t see her until then doesn’t mean I can’t start training now. I should be able to get in a good month of training by the time I visit her so I’ll have a realistic idea of what the pain will be like. Another reason to run the marathon is that I’ve always wanted to go to San Francisco. So hopefully you’ll see me in San Francisco in July and it will be as I cross the finish line of the marathon having run 26.2 miles through the hills of the city by the bay. At that point I’ve have a real reason to hurt.

Hurricane preparedness tips

One of the blogs I enjoy ever so much had some great tips now that hurricane season is upon us.  These tips were just too good not to share:

As Hurricane Earl bears down on the north eastern United States, many of our readers from NY to Massachusetts to Cape Cod to Maine, are writing and asking serious questions about hurricane preparedness. In an effort to help our inexperienced northern brethren, we proudly publish Rumpole's Rules For Hurricanes. (c) 2010, all rights reserved.


Q) When is the right time to evacuate?

A) Excellent question. Remember: "Time is on your side". Avoid the early rush to evacuate. As you will learn, hurricane land falls are notoriously difficult to predict. At any given moment a hurricane may wobble fifty miles in any direction. Therefore, we here in Miami have learned to wait until the last moment. Only when the hurricane is mere miles away and you are sure the eye will pass over you, should you then consider packing up the SUV and loading the family and evacuating in land.

Q) I have decided to hunker down. What can I do to prepare my home?

A) Good for you. Studies have shown that it is safer to be in your home during a hurricane than anywhere else. Two words sum up what will make your home safe: duct tape. Yup- duct tape the whole damn house. Start with the windows, move to the doors and then use an "X" design on all interior walls. No force of nature can blow down a wall supported by a properly placed "X" made out of duct tape.

Q) Do I need to upgrade my insurance?

A) No. Insurance companies are well prepared for rare natural disasters and you will be fully covered.

Q) Assume the worst and the storm hits my town and the power goes out. Where do I get a generator from?

A) FEMA ( Federal Emergency Makeshift Association) will send two guys named Ernesto and Ricky to your block with government approved generators which they will carrying in the back of their van. Cash only.

Q) I keep hearing about a storm surge. What exactly is it?

A) Prior to the storm, your local television stations will whip the populace into a frenzy, liberally lacing fear with the need to rush out to the local Home Depot and buy as much water, batteries, lumber, and flashlights as your credit cards will allow before your neighbor does. The mass of people descending upon Home Depot is what storm forecasters call the "storm surge."

Q) I have a charcoal barbecue grill. Can I bring it inside to cook and boil water when the power is out? I am worried about carbon monoxide.

A) Absolutely. This is a charming and quaint custom whose roots can be traced back to a small town in Miami called Hialeah. By bringing the gill inside, you greatly increase the convenience of cooking food and boiling water. Carbon monoxide is an odorless and tasteless gas. As they say in Hialeah, "what you can't see or smell can't hurt you."

Well, there you have it. A few simple rules to follow and those of you from Cape Hatteras to Cape Cod can safely enjoy hurricane Earl.

Missing Ingredients

I made home made chocolate chip cookies today only to discover that I'm out of baking soda, so the cookies won't rise properly.  Guess I'll just have to eat the cookie dough.  Bummer :)

Lilac sent

Brief Update

1. Elbow seems to be doing well, the incision has closed up and there is no new swelling
2. It is HOTTT here in Miami (over 100 the last few days)
3. Work has been crazy busy
4. Have two much needed upcoming vacations. Vegas in September with friends and the Caribbean with family in October
5. Bought a new candle a while back. Its lilac scent and I'm loving it. It smells like spring time in Nebraska. My parents have a row of lilac bushes in the yard and growing up I'd sleep with the windows open and wake to the smell of fresh lilacs in the morning. Since it’s so ridiculously hot here in Miami I can't sleep with the windows open so

more elbow pics

Elbow Update

So the orthopedic surgeon says the elbow stays open. And that I have to dress and pack in twice a day until it closes naturally. Uck!! Watching the Doctor slice my elbow open, blood and puss ooze out and seeing the doctor dig around in my elbow with scissors to clean out all the infection didn't bother me a bit. But the idea of sticking gauze in my elbow twice a day actually makes me a little bit nauseous. Uck. So wish me a speedy recovery and that the lupus doesn't slow down my healing time. Because if my elbow takes months to heal I'm not going to be a happy camper.

Enjoy the grossness :)

See what a difference 10 days can make