Feeling Encouraged!

Hello all! =)

 Well I have been busy getting things transferred from Mayo to specialists here in Grand Forks. I have also been “flaring on and off for the past two weeks.  So its been an off and on couple of weeks.

We were able to find a neurologist, nephrologist, and rheumatologist in Grand Forks so we will hopefully no longer have to go back and forth to Mayo. YAY! The rheumatologist wasn’t supposed to have any openings until February but they called and were able to get me an appointment in December, another huge praise!   

 I started having some blurry/fuzzy vision in my right eye on Tuesday, and with my one medication be known to cause retinal toxicity we thought it would be best to check it out. Come to find out it’s the steroids causing small cataracts behind the lenses in my eyes. My eye doctor was quite surprised to see that. I am just thankful that its not anything going on with my retinas. He also gave me some artificial tears since my eyes are dry. I really didn’t think that my eyes were dry until I put the drops in, such a big difference!!  

We saw my doctor here in town today and he has started the processes of lowering my dosage of prednisone. Since I have been on so much for so long I have to take it real slow to avoid my body going into shock.  He said when I see him in a month I should either be completely off or down to at least 5mg! I am so EXCITED! =) He also said that all the symptoms I am currently having are from the prednisone and once the side effects are gone they will be able to have a clearer picture on the lupus.  The nephrologist will have to make the move on the cell-cept and we see him next week.  A little more waiting but I finally feel like we are on the right track!

These past few weeks I have had many down days were I can’t do much but lay around and sleep. I have also had the return of the low grade temp. It’s so hard to really know what is going on since everything changes and there are so many unknowns. My body is always just a mystery….. I am still confused at this disease. It changes from day to day and something is always showing up.  One of my favorite sayings I have found about lupus is “I have lupus but lupus doesn’t have me!”  I just learn every day to deal with what is thrown at me.  I am on a lupus support group, which has been a great resource for information and a place to ask questions or relate to people that are going through the same things. One thing many people say is that they wish they had cancer or some disease that actually makes them look sick as many people don’t understand although we “look good” we are in the inside screaming.  I often feel trapped inside of my own body and I can’t get out and that this dreadful disease is running my life. But if I let that get to me it just makes me more miserable.  I have and am still learning to live with my limitations and make the best of things. I might not be able to do things the same way I used to but I still am able to do things. 

I am still waiting to hear on when an apartment is available, it has only been two weeks but I am already going nuts!

Well, that’s it for now…  Ill try and update sometime next week if all goes well.