Changes!

 Well, we are still waiting to hear from mayo on a few lab results and whether they want to completely take me off of steroids and put me on cellcept or just cut my steroid dosage down and put me on cellcept. So I am just trying to be as patient as I can while waiting. The labs we are waiting on is to see if I have any issues with my blood, I believe is what the rheumatologist said. The rheumatologist thinks that could be a part of my headaches.  The rheumatologist also said that my central nervous system has been affected by the lupus. I have no idea if the damage that has been done will ever recover or not. The well-known “butterfly” rash has been showing itself a lot this past week, so I am not sure what that means. I haven’t ever had it show up like it has, it feels like my face is on FIRE!.  I have heard that some experience it when they go into a “flare” or if they are dealing with a lot of stress. I started to go down Monday night and could do nothing but sleep and lay around Tues. and Wed. Thankfully I feel somewhat like a person today! =) This is the hard part of lupus, you never know when you will “flare” and how long it will last.

 There is a lot that is keeping me busy. I have been able to get to school twice a week for tutoring to finish up my sociology class. I am pretty excited to be done with it by November. Its been nice to get out of the house for a little bit here and there. I still get pretty worn out after going out and about and usually have to take a nap or lay out the rest of the day, but It hasn't been wearing me out for days afterwards, which I am very thankful for.

 We have some applications out for something’s to help out with my schooling, and job placements. I am anxious to hear back they said it can be anywhere from 30-60 days. More waiting…. I am not a very patient person, but I am learning to be one. =)  I also put in an application to see if I am approved to move into an apartment/assisted living place.  They say it can be up to six months before we hear anything but could be sooner if people move out etc. It will be a big change if it works out. Mixed feelings about the whole thing, excited to get out on my own. But thinking about not being home with my mom all the time is hard. The nice thing is I am still very close to home, just up the street. I know she will be there in a heartbeat! =)  There are a lot of ups to having an apartment with all that is going on. Having everything on the same floor, not too much walking from room to room when I’m having a bad day etc… It  will also be easier to get on the B.U.S so I can get to and from school. Getting pretty anxious, and hoping it won’t be 6 months till we hear anything.

 I have also had a new interest in doing nails and many people have suggested I should go to school for it. So, I am looking into that as well, as it is something I could do from home or part time while I slowly work on getting my teaching degree. I saw online that it would only be about three months of schooling. So much to think about, seems like once one thing is figured out another thing comes up that needs to be done.

 I am finally feeling like I am adjusting and accepting my new “normal”.  I still have my days where I miss my “old” self, but I know that I have to take it day by day. I am thankful for everything I still have and that I can get out and about. A huge blessing is that we got a brand new wheel chair under our old insurance before it ended. I am hoping to someday soon put it away in the closet, but knowing it is there forever and we don’t have to pay for it is a huge blessing!  People wonder how I feel about the wheel chair, and I have to say I don’t like having it and I would do anything to be able to walk around school, or walk around the mall but without it I wouldn't be able to do some of things I do. So it’s been a life saver and has still given me a chance to have a life.  I am thankful for my good days were I can walk to church or walk at smaller places!!  =)  Every day is unknown and I just take it day by day.

 Well that’s what’s been keeping so busy these past few weeks.  I’ll try and keep you posted! =) 

Later! 

Katie