Monday, November 29, 2010


When I was a kid, I grew up watching "Little House on the Prairie".  I was a bit obsessed, and as I grew older I read the whole series.  Oh, how I wanted to be Laura Ingalls Wilder!  I loved how the shows always showed the community spirit, how people worked together to help each other.  The small town where I grew up was a little like this, but it was already the 1980's, and a far cry from the 1880's.  Since moving to Florida in late 1991 I always felt a "community hole", never really finding anywhere that seemed to have a great support network.  Then, my daughter got sick.

It's really sad that it takes having my child become chronically ill to find such a supportive community of such amazing, wonderful people.  And yet, it has been such a blessing.  I currently have a few of these going at the moment; I have some for the Juvenile Arthritis end, and some for the Juvenile Dermatomyositis side.  Not once have a seen a 'snarky' comment, backstabbing, viciousness, or anything other than heartfelt, sincere love and support.  I am so blessed by having these people in my life, most of whom I have not met.  They are there to offer prayers, sympathy, advice, suggestions, or just listen if you feel the need to rant.  These are people from all over the country, all with different levels of income and education.  The difference is that we all love our children so much, want to help our children so much, but we know that we can do this best sometimes by reaching out and helping others.  There are others who are the child reaching out to help parents understand, & those that have been the child but now understand the adult role and just want to help.  Though in some big ways my heart is broken by Emily's diseases, another part of me has been made more whole because of them.  If I could take them all on myself, take them away from her, I wouldn't even blink- I would just accept it.  However, since that isn't going to happen, I can help to educate, help to advocate, and help to support these other people.  I cannot tell you how alone I felt, feeling like I was going through all of this myself before- just our family.  It is so good to know that there are other families out there that have the same struggles.  And it's a wonderful feeling when you find a parent whose child has just recently been diagnosed that you can help through.

Autoimmune issues can be really challenging.  One thing that I have found is to never expect anything to be any way.  We try to expect the unexpected.  Em used to get crazy rashes.  We figured out they were related to medicine.  She's had blood in her stool.  When she gets sick it's a challenge.  The first part of the challenge is finding out that she is sick, because she doesn't usually know.  Her meds hide fevers.  (Not very helpful).  If she gets sick, it can go bad very quickly if you don't stay vigilant and look for it.  A high fever can make her unable to move.  Then it's a panic, wondering is she sick or flaring?  What to do about meds, injections or immune suppressors especially, when sick?  We have so many questions that if we were to call the doctors for every single one.... Well, they'd probably change their number.  Who else but the parent of a child (or an affected person) can understand that my child is terribly ill despite maybe being able to run or giggle like a child at that moment?  Who else can understand that it's a miracle that my child got out of the chair to wander around at an arcade despite not having been able to walk all day?  Not very many.  I'm sure we get our share of "WTF?" looks.  I don't care.  I know that my child doesn't complain, but she does her damndest to try to enjoy her life whenever she can.  It's a wonderful thing that I can share these types of things with my communities and they will cheer with me, or tell me what their doc has said to do.  I would, once again, be lost without them.

On a side note, I'm a little worried for 2 reasons.  The first is that Em has something going on.  I'm not sure what yet, but I plan on taking her to the pedi in the next day or two.  I'm hoping we can get a Monday appointment, but since it's not urgent I will accept a Tuesday appt.  It may be that she has a cold.  She's never had a cold before.  It's usually sinus infection, bronchittis, flu, etc.  She's very stuffed up, but it's clear, so I'm guessing it's a cold.  At the same time, I know that Prednisone can mask infections & Prednisone & Remicade both can mask fevers, so I'd rather have her pedi see her.  The other thing that bothers me is that, after about 2 weeks of no muscle weakness in her arms, she announced that her arms were weak again.  I'm not sure what to make of this, but I'm not going to read too much into it since she's only said it once.  It's important to not panic, keeping a level head, evaluating things, and trying to be logical.  Difficult at times, but very important.

I think that sleep will come quickly tonight...

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