Facing the now

I'm not really sure where we're at right now.  The funny thing with rheumatic diseases is that you just never know what they're going to do from day to day.  We had two years of relative inactivity (Raynaud's aside).  Yesterday during the day she had more energy than she's had all month.  I guess she was so happy to be home and finally starting to feel a little better.  We truly believed that she had "bounced back".  That night at Brownie's under the flourecsent lights I could see how pale she really was, how red the circles around her eyes are.  She barely got up to play with the other kids, and instead of playing outside or talking outside after, she wanted to sit in the car.   I figured that maybe it was because by that point in the night she was tired, but would be even better today.  Well, I can't say that she's worse- she's definitely getting better slowly, but she's not where I thought she would be, either.  She and Kevin went on a quick outing today and she was so tired that she didn't even want to visit me or pick up her brother at school.  She's walking very stiffly, but at least she's walking.  She's back to bathing two or three times a day.  When she actually opens up about hurting somewhere it's the muscles she's pointing to, so at least her joint arthritis is under control.  She does say that she is still "wobbly", and she has to hold her arms out to keep her balance.  I'm just glad she CAN hold her arms out!!!  Oh, and her Raynaud's decided to flare again last night.  Since she's on Remicade now, which is similar to Enbrel I think it's going to be about how it was when she was on Enbrel.  The Orencia was great for this problem, but not so good on the Dermatomyositis, and that's a bigger problem.

I had the brilliant idea of changing pharmacies.  I have been told in the past the the big box pharmacies pop up on every street corner because they over charge for their meds.  So, I decided to try elsewhere when we were on our way home from the hospital.  I'm pretty sure this new place is just pretending to be a pharmacy.  Not only did they only carry 3 of her 8 prescriptions, but one common one they can't even get.  Her Methotrexate is something that my CVS always has in stock, no big deal.  If they don't have something they call me.  I had a hell of a day today trying to get her meds, but I still don't have her anti-inflammatory.  I had seen online the other night that her Celebrex was going to be around $75!!!  And she's been on Prednisone pills, but with the throat weakness she's having a hard time with them.  The first night she actually vomited her medicine back up.  Despite not liking it, she begged me for a liquid.  So, I called the doctor's to get a liquid steroid, and hopefully a cheaper NSAID.  (Non- Steroidal Anti Inflammatory- similar to Motrin/ Aleve).  I had to call the pharmacy three times and our insurance company to find out which would be less- Mobic or Celebrex.  CVS has always been able to tell me.  The new place said we'd have to have a prescription.  Seriously???  For a quote???  Lame.  I'm going to transfer all of them back to CVS as soon as I can.  The insurance company kept transferring me around, hung up on me once.  Frustrating!!!  I wasted a lot of time for no good reason today.  And after I finally got the right answers, I can't get her meds until Tuesday.  Heck with that!   I also found out that it's the insurance companies that set the prices- not the pharmacy.  Mobic will be a $50 copay no matter where I go.  Good to know!

I also spoke with her school nurse today.  I know I've said this before, but we are so blessed to have such a wonderful school for her.  So many people that I speak with have issues with their school.  I absolutely adore our school, and all of the helpful, caring staff.  They really do have her best interests at heart, and they do what they can.  They are working on getting her on the homebound program, and setting it up so that she can bounce back and forth on it if need be.  Plus the school nurse has connections with Florida's CMS Kids- a health insurance for medically needy.  It has a sliding scale payment plan, which will help us.  I can't even imagine what her hospitalization is going to cost.  When it comes to the school, I try very hard to keep them in the loop.  I update her teacher periodically, I email the nurse with any medication changes or anything else that needs to be updated.  I am as honest with them as I can be.  I feel that it benefits her.  I have had pamphlets sent to school to help people understand what she goes through.  I give them my blog info in case they'd like to keep up on a daily basis.  It is their right to be kept in the loop, and know what is happening.

Anyway, that is about everything going on right now.  I'll be back soon!