I hate CRMO

Well I am having a freak out moment.   My daughter, Amy, who has CRMO  (chronic recurring multifocal osteomylitis), is having pain again.    She lives with pain on a daily basis, but at this moment she is having extensive pain in her feet, ankle and knee.    I know I have a page all about what CRMO is, but I haven’t actually expressed my hate for this disease.

CRMO (Chronic Recurring Multifocal Osteomylitis) is a Childhood Auto-Immune Disease (CAID).

We have good times with it, where the pain doesn’t stop her from living life, but then at other times the poor kid is in a lot of pain.  CRMO can be dibilitating.   Its aweful.   As a family, it stops us from living life to the max.   The doctors want her to live normally, but the reality is that the pain is too much to bear at times and normal is just not possible.  Does this mean we have to accept a new type of normal?   Is CRMO our new normal?

Its not just the pain in Amy’s feet and legs…its also the treatment plan.  She has to have megafol every day except the day that she has the metholtrexate tablets.   In large doses the metholtrexate can be used as chemotherapy for cancer patients, and in small doses it helps people with osteo issues.  On the 24th day of each month she has to have blood tests to check if the medication is interferring with her liver, as well as CRP levels (inflamation indicator).  Last month her level was 2, and the month before that was 4.   It will be interesting to see what it is this month as she has been complaining of a lot of pain.

okay, vent over!!!