Losing Weight on Prednisone

This was a very rough week! It started with stress which lead to pain which lead to Vicodin which lead to lethargy which lead to more pain and more Vicodin. It is such a vicious circle and they only way to get off is to stop the Vicodin and suffer the pain for a few days. I can take other things to get me through but it still makes for more pain than usual. That is why I try to avoid it all together these days.

I did decide this week that I have to find a way to lose weight. The fact is that I will never be able to go off Prednisone, my body is too dependant on it, even if my Lupus was cured tomorrow. I don't know how but I have to take the added stress off of my joints, lungs, liver, kidneys, heart, etc. I, of course, don't like the way I look, although I am finally learning to deal with the fact that today I am what I am and I have to be happy with where I am right now instead of waiting for some future event to make me happy. Anyway, I have tried a lot of different things and I have talked to my doctors and many other people who are on Prednisone and have gotten no real solution. So I am determined to figure this thing out somehow. I will listen to any idea, explore any healthy possibility, talk to more doctors, talk to more people on Prednisone, and anything else I can do to solve this! I will keep you posted of my findings and results on this blog.

The first thing I have learned is "Don't look at the scale". It is not about weight! I spent 4 months last winter counting calories and getting as much exercise as I could. I built up quite a bit of stamina and was feeling considerably better. I noticed the shape of my body had changed slightly, but I did not lose a single pound. I got very discouraged and depressed. I quit counting calories and as my activity level decreased so did my stamina, while my pain increased. After talking to my doctor about this, she said "Don't look at the scale". Prednisone can cause you to gain water weight as you lose fat so the pounds may not change but that doesn't mean you aren't healthier, stronger, and losing fat. And, we all know that muscle weighs more than fat. People like me who have been so sedentary for so long have lost a lot of muscle mass. As you get exercise that fat will turn back into muscle therefore actually raising your weight on the scale.

This brings me to the second thing I have already been convinced of, "You must get it moving". There are just no two ways about this. You must recondition those stagnate muscles, including your heart muscle. In addition to weight gain, Prednisone raises your risk for Cardiovascular disease. Even if you lose no weight, people on Prednisone must get exercise! Believe me I know many of you are saying I just can't do it, I have been there myself, repeatedly! If all you can start with is walking to the other room and back, that is ok. You can do leg and arm lifts in your chair or bed. You can incorporate the exercise in your daily tasks and chores. Whatever it takes, you must get it moving! And, For those with Fibromyalgia, Lupus, or any other chronic pain, exercise has been proven to reduce pain over time.

The Man in the Mirror

I went today to see This is It, the Michael Jackson movie. I was as great as everyone is saying. It was also sad to think about what could have been. The final song performed in the movie was my favorite, Man in the Mirror. This song has always been inspiring to me. It asks us all to make the world a better place by starting with yourself. Make yourself a better person and that will make the world a better place. I have tried to apply this in my life and it was neat to see him perform it one last time!

We also got a surprise in our mailbox today. We ordered magnets, charms, pins, and wristbands with our logos and designs. We have been very excited about these new products, but we weren't expecting them for at least another month. They turned out awesome! There was one snag, the wristbands are pink. I expect they will correct the problem. In the meantime, I can't wait to get the other items posted!

Leg Pain

I have this terrible leg pain. I don't know if it is caused by the Lupus, the Fibromyalgia, medication side effect or what. It only happens when I overdo it, but not necessarily walking or using my legs. It usually doesn't start hurting until I try to rest or lay down. It feels like my muscles are being scraped off of my bones. When it happens I have to have pain meds or I am in big trouble! I certainly can't sleep or even lay still until the meds kick in. I have never really talked to my doctor about it specifically but I am thinking I should. I remember when I was on high doses of Prednisone I had this pain constantly. I am now thinking maybe it has something to do with the long term steroid use. I guess that needs to be ruled out at least, I can't be worried about bone deterioration.

Inspired

I am so inspired right now. I have a ton of ideas, new information to share, new products, etc. I have been doing my best to get it out there as fast as possible! I have however worn myself down. My fingers are literally bleeding from typing too much. My legs are killing me from sitting in the same position for days. Even after that I am having a really hard time taking a break. All I can think about is all the things I want to post. I have had to take some Vicodin though and so I am going to force myself to watch a movie and go to bed early in hopes that tomorrow will be better.

To-Do List

I have felt like I have been treading water all week. I have been trying to catch up on emails and website business, but there is so much of it and there is always something coming up. Monday I did pretty good. Tuesday morning my sister called and woke us up. She was feeling weak, shaky and had a killer headache. She has Scleroderma so like us she can't "wait and see". We took her to the ER just to be safe. They didn't find anything emergent so they sent her home to rest. I was exhausted after that and took a 5 hour nap. I did get our 2009 Christmas ornament designed that night after my nap. They should be posted this weekend. Yesterday I started getting some things done and I got sidetracked on making a video called "The Prednisone Effect". It is cool and I cant wait to post it but it didn't cut down on my to-do list at all. Today was Andrea day and we took Princess Andriela to have her pictures taken. THAT was a blast! I have been working hard since we got home and I am getting through it finally.

Oh No, New Doctors

The worst part of moving is having to get new doctors. It's like torture. First I have to pick a primary doctor. I have no idea who is going to work best with my personality, who will listen to me and be experienced enough to take care of a complicated Lupus patient. It is very important that I pick the right one because if it doesn't work out, then I have to start all over again. I always ask people I know for referrals, although somebody that works with their personality may not work with mine. I also usually pick a woman just because I have found them to be more willing to listen to my extensive Lupus knowledge than men, not always, just usually. I also like to find a University or teaching hospital or clinic. They seem to be more interested in the science of medicine rather than the business of it. Appointments almost always take a lot longer but it is worth it to me! Once I decide on a doctor I then have to call and make sure they are accepting new patients and that they take both MediCare and MedicAid.

Once I get my appointment it is time to collect my medical records. I have to call all of my previous doctors ask them to release the records, and sign and fax permission. When I get to the appointment the records are never there. I have to go through my entire medical history, medication list, diagnosis list, and the list of referrals I need. That takes forever and the nurse is constantly looking at me like I am crazy. Then the doctor comes in and looks at the chart, looks at me, looks at the chart, looks at me..., looks at my chart, puts her head in her hands, and finally says "WOW, You've been through a lot!". I laugh uncomfortably. And the next 30 minutes is pretty much me laughing while the doctor tries to wrap her head around my case. While it has never happened I swear they are trying to decide if they should just tell me to find another doctor.

Finally they start trying to jump in. They write any refills I need even though they don't yet understand all of them. They start getting my referrals going. And, I start to get a little bit of confidence in them. It generally takes about a year for the doctor to really get an understanding of me and for me to get comfortable and confident with them. I also have to rinse and repeat for the Rheumatologist, Nephrologist, Cardiologist, Psychologist, Gynecologist, GI doctor, Neuro-Opthamologist, and the Podiatrist. That is why I do everything in my power to avoid changing doctors!

4 year old, Nausea, and Hong Kong

It is Thursday and around here that means its Andrea Day. Andrea is my 4 year old niece. Today we started at 7:30 am because there was no pre-school. We woke up for a while, had breakfast and watched lots of Dora. Then we went to the Children's Museum. She had a blast! We spent like 3 hours there. We then spent over an hour playing at Burger King. My grandmother called and said she was coming over for dinner, we were so excited! We went to Walmart and Andrea drove the motorized cart for me. I about passed out from nervousness but the truth is she did an amazing job, I didn't have to help at all. I drive worse than her sometimes, LOL. We came home, made dinner and had a great time with grandma and grandpa. I had a great day, but by the time she went home I was ready for the break. We have such a sweet deal I must say! We get all the fun and then we get a break.

I pushed myself too hard today. I am hurting pretty good. I am also very nauseous which is an old symptom that seems to be rearing it's ugly head a lot lately. I used to battle this ALL the time. I even had to take daily medication for vertigo/motion sickness for a couple years. I have been off of that med for several years now just taking Phenergan as needed for nausea, really only about 4-5 a month. This last week I have taken 6, and it doesn't always help. I guess I am just pushing too hard.

The other thing I did today was very exciting. We have finally ordered custom car magnets, wristbands, lapel pins, and charms all out of our logo. We have been wanting to do this for a long time. We have researched dozens and dozens of companies and products and finally settled on a company out of Hong Kong to do all of the items for us. However, doing business with Hong Kong while far easier than expected was not as simple as we are used to. We look forward to posting these products in 4-6 weeks. Can't wait!