So the struggles continue. I got my blood test results back and I had hoped that my sed rate would go down on the one med, but it hasn't.

Things have just been crappy. I am really starting to feel emotionally drained with all the meds and the side effects. Plus the feelings. the pain. I have a sinus thing going on and I can't take anything for it. this totally sucks. I know I should be blessed to have Lupus, so I can share with others my story, but sometimes I just want to scream. people just don't get it. How do we get the word out about this disease? how do we make people see?

The Breast Cancer three day was this weekend and I a looked at the news story and was jealous that Lupus doesn't get the amount of publicity as other diseases. it's just as bad, but there is no cure. I am so frustrated. I want so much for people to understand me. To not make a bid deal of it.

Thanks for lettingme vent... sometimes it's just good to get it off my chest.

So I had a doctors apt this morning. We went over my pulmonary function test. The good news is the Lupus hasn’t set into my lungs. It does look like I have some asthma so I am getting an inhaler for when I need it…. Yippee. We are going to try and drop the Lupus meds to see if it makes a difference. I won’t know for two weeks if it will matter if I take it or not. I’m kinda glad I don’t have to take it. It’s hard to remember cause I have to take it on an empty stomach. Plus it is so stinking expensive.

The meds for the fibromyalgia are working, but there is one side effect that is terrible. Weight. Apparently 70% of those who take this med cannot lose weight and to make matters worse I have gained 9 pounds in 3 weeks. I am devastated. If this stupid med wasn’t working so well I would go off of it. I am the heaviest I have ever been, it’s so depressing. So what do I do? Keep getting fat and be 90% better than I was a year ago or go off the meds, lose 100 pounds and be in pain and MISERABLE? So frustrating, and losing weight has never been easy for me, so 100 pounds would take a long time. Decisions, decisions.

Nothin new

same old, same old stuff. I feel like crap. Will this ever end? probably not. I'm in the middle of a pretty good flare. My body just aches and aches, the pain is so intense and even the max paid medication isn't taking the sting completely away. Sometimes the flares can be really discouraging and maybe it's my lack of sleep today, maybe not. anyways, I'm keeping up with life, and I hope to have more time to update you soon.

So the GF diet tanked. There is no way in the world I could do this. Breakfast for me is my most important meal…. And I can’t find anything tasty. Oh well. I have decided that I am going to stop trying to fix all these pains and flares and just learned to live with them. I know I can. Lupus and Fibro is just going to have to live in my body while I fight it off and live with it.

This last weekend I over did it, and I knew it. But you know what- I would do it all over again. It was totally worth it. So now I look for ways to make this happen. I struggle with listening to my body. I struggle with not over doing it. I struggle with thinking so many things are worth it, when they are not.

Day Three, Four & Five.

Well day three sort of worked out. Oh who in the WORLD am I kidding. I had pizza for lunch and a graham cracker later that evening. I seriously cannon do this. Saturday & Sunday I managed to get it done. On Saturday I even went to a couple of specialty stores and bought gluten free stuff- but have you TASTED it? I think I may starve to death. I have tried and there is NO way I am going to be able to do this. What was I thinking? I must have been crazy. Oh well, I tried. I decided I was going to “cut back” on the gluten intake. So I will still use brown rice, and rice flour, but I need my bread and my morning cereal. Sorry folks, it aint gonna happen in this lifetime!

Day Two

Ok, so it's day two of my "Diet". I have to say I have already failed one...I had a hamburger last night with bread. I have decided after looking at the list I will probably succeed 90% of the time. Quite a few things I can turn in to Gluten free meals, but there is that occassional want for some bread or need for a quick meal.

Today at lunch I did succeed, I chocked down a corn tortilla on my taco (I am a big fan of flour), but I did it. I should weigh myself and see if I get any results. If I can learn to do this, maybe I can discipline myself to do other diets and loose some weight.

Last night was an interesting one.... We had our softball playoffs. I refuse to let Lupus put me 100% down. I quit bowling and I told my doctor there was NO WAY she was taking softball from me. She was surprised, but I am willing to suffer because of my love for the game. Anyways, we played two games in the heat, I have never done that. God really provided for me. As of last week on 10 ladies were suppose to come, that meant I would be on the field for the ENTIRE two games- something I knew I couldn't do. Well God added an 11th lady to the mix and we were assigned to trade places- it is DEFINATLY a God thing.

Two games was hard on me, at one point I stood behind the plate willing my body to stand up straight. It was probably one of the most physically demanding things I had done. I am paying for it today, but it was totally worth the high of winning those two games.

Day One

Well today I saw my doctor. We are going to do a test on my lungs to see what is going on. That will happen in a week or so. The real thing she told me to do is take gluten and wheat out of my diet…. I KNOW! My jaw dropped too. She said that she rarely suggest a natural solution but this seems to work for some of her patients and at this point we need to try whatever we can to get my lupus & fibro to calm down.
So day one begins. Today is bagel Wednesday, I was going to have a bagel for lunch… but that is a no go. After looking at the list of what I can and can’t eat I realize this may NEVER work for me. How do people do it? I am going to really try, but I know there will be setbacks. I am a picky eater as it is, so to add no gluten to that, you might as well give me an IV for nourishment. So stay tuned. Hopefully I won’t get too cranky.