Running out of snappy titles...

I am running out of snappy titles for these posts.  Suffice it to say, all the days lately are long, hard or tiring, disappointing and frustrating.  I have no idea what to call today's post, 'Headache from Hell'.  Shelbie-Sue was not lucky enough to avoid the worst headache of all time.  It isn't quite as bad as the last time she had IVIG but it's a 7 on the infamous pain scale.  Her platelets are coming up which is dandy.  She has a whopping 24 now!!  Not good at all but 23 better than 1!  Funny how what makes us happy shifts.  I use to be really happy with 100, even 50 didn't worry me too much but after living with 1 for a couple of days anything is a relief.

I am not enjoying the learning curve to all this.  Immune deficiency disease is not something I am very familar with at all.  It took me 18 years to get a handle on the ins and outs of the basic SDS disease.  I am part of an email support group and they have been helpful with information and ideas of what I need to be doing to keep her comfortable.  I still kind of exist in denial thinking this is just going to go away soon and everything will be back to normal.  The people who have SDS kids that also suffer with ITP do not make it sound like this is just a passing episode so it's a little scary.  They also can't believe she is at home and not in the hospital.   It's hard when doctors have the last say.  It is different looking at things from a professional point of view than the emotional and mental one that clouds our vision.  Somehow, you have to find a resolve, peace of mind that the doctor does know best.  I just wish I had more information.  We will now have to add Immunology to our list of specialists on board now.  Dr. Shimamura will set that up for us this coming May while we are there for bone marrow biopsies and mitochondrial clinic.  I would love to sit down with an Immunologist today and get my education started in that area so I can start asking intelligent questions and piecing the big picture together better.  Somehow, it all has to be connected.  Big sigh....

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