Another Week....

        So I haven’t updated in a while as I had some unplanned things come up. It all started about a week ago with increased pain and fatigue.  I had gone to my doctor on Monday and he put me on some meds to try and get everything under control. He told me if I am not feeling any better to come in again on Thursday. So, not feeling any better, I had a friend take me into the clinic. The doctor decided it was best to put me in overnight to try high dose steroids and IV pain medications to try and get a control on what was going.  As with lupus, this is most likely a flare and sometimes all it takes is a good whack of steroids to get the body feeling better. After a night of high dose steroids and IV meds, nothing changed.  He just sent me home and to follow up on Tuesday. He was puzzled that my body didn’t respond to any of the steroids or meds.  He was nice enough to send me home so I could enjoy my birthday weekend at home.

        
       Today I saw him and he will be coordinating with my mayo doctors to try and get everything squared away.  He is really pushing to talk to the neurologist as I am beginning to have more “black outs” and as well as dealing with this headache. He doesn’t see them increasing the dose of steroids as my body didn’t respond to the treatment in the hospital.  So, I am just hoping they take me of the steroids completely as it is very destructive to the body.  The good news is, my kidneys are still doing well, which I am very thankful for!  =)

      I am still battling the pain, headache and fatigue but I am thankful to not be feeling so crummy! The doctor did set up an appointment for Physical therapy and with the lady who does acupuncture. I am hoping that will help. He also put me on a med for the headaches. He said that it doesn’t stop the current headache but will help avoid them from coming back and that medication can take up to a month to begin working.  

     The next step they were talking about was putting me on a drug known as CellCept.  It is used on patients with organ transplants. There are a lot of risks to this drug, including an increased risk of cancer. I know though, that I have to do something to try and get this lupus under control. It is very hard to know if the drug will work for me or not, as everyone’s body is so different. Some people have great results and some don’t. I am willing to try anything at this point to try and have some normalcy in my life. I am just thankful my doctor here is starting to get things going and keeping in contact with mayo and trying to avoid more trips to mayo.

       I had some friends who made my birthday so wonderful. I thought I was going to the church to a graduation party for a friend only to find a surprise party waiting for me. It was such a wonderful night and I couldn’t have asked for a better birthday gift than being with friends.  Every detail was simply perfect! I then got to spend my birthday day with my whole family and enjoy time with them, it was a perfect birthday! =)

     

 So that’s what my week has been like. I am hoping to soon post a little more about lupus and how it’s affecting me as it affects everyone so differently, and no two cases are the same.