I can feel the anger

I have lost track of time, but I do believe that our family is into year three of solving the mysteries of Sugar's ailment(s).  Anger has hit me and hit me hard.  I can feel it bubble under the skin at times, and I am now at the point of "why her," "why aren't her issues resolved," why is this diet not working," etc.  Yeah, I have had the sad, frustrated, stressed, worried stages, but this I know to be anger. 

So, what are we dealing with.  Well, let's just add them up:

horrible rashes on her:  arms, spots on her shoulder blades, collar bones, eye lids, beneath her earlobes, neck
and these rashes consist of:  burning, itching, pain, red, raw, nearly bleeding, tears, wake ups, etc
belly pain
fruity breath
moodiness (or is that pre-teens)
dermatologist appointments with no improvments
neurologist to make sure everything there is fine
allergy specialist
GI appts rescheduled
prescribed meds for SIBO (yet again for the 3rd time)
more and more and more

This will be Sugar's third SIBO infection.  SIBO is small intestinal bacterial overgrowth.  Here is information at Medicine.net to go over what SIBO is.  LINK

I am curious to know my daughter's sensitivity level to fructose.  Everything I have researched indicates that FM sensitiviy is up to each individual.  Some folks can be okay with things in moderation or certain items in moderation, while others need to stay clear.  I am finding that my daughter may be on the higher level of sensitivity and am finding it hard to break down whether or not the polyethylene glycol is causing havoc on her.  This is in both antihistamnes she is on for her rash and her rash is not clearning even though she is on a few creams/lotions/ointments for the rash too. 

Glycol alone is on the list of "may have to avoid" for FM sufferers, but connected to polyethylene I am not sure of the way glycol reacts.  I had a chemical engineer try to explain it to me, but it was way over my head in understanding.  So, is the glycol affecting my daughter or not?  Maybe - but maybe not.  It is in the medicine for the SIBO so it will be interesting how that works.  And since we are so limited in our medical field of how much knowledge they even have of FM, getting a different answer by everyone you ask is a high possibility; especially when unfamiliar with FM. 

So there lies my anger in dealing with issues concering our daughter.  The enouraging part, I did find a news report Sugar's and Cole's doctor did last month concerning FM.  Yes, it only touched a small bit on the diet and listed only fruits she can no longer have, but it is a start.  It is a start - yes it is. 

No comments: