WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Tuesday, December 27, 2011

Not just the Dr.s, but other parents...

This is a touchy subject, but does anyone else notice that parents tend to "judge" nearly as much as the Drs?

I hate to say it, but on a number of groups and boards I have seen some heavy judgement. I am the first to admit that I am guilty.

Mito entrapes a family into a odd lifestyle that we tend to become very singular and unique in our parenting. I know many of us have decided to home school, sometimes for health reasons, sometimes because Public Schools often do not recognize Mito as a disease(my daughter had a High School teacher call her a faker!). Sometimes because the child with Mito has such a busy Dr. schedule it would be impossible for them to do well in a traditional school. Some families chose to send their children to a traditional school to help keep their childhood's as normal as possible(we both home schooled and done public school)

For example- Abby's biggest symptom of her disease that we struggle with is fatigue. We avoid most social functions. We avoid most family functions, and we do everything we can to avoid Dr. appointments. I see the Dr. visits as high stress, huge exposure to germs, and so far, though we found caring Drs. they don't have any treatments or suggestions to improve her life- it is usually about "tracking" and "monitoring" .. etc. So why go unless we absolutely must? Dr. Kendall said something that reassured me she is the right Mito Dr. for Abby. Abby had expressed to Dr. Kendall that she is terrified that Mito could affect her cognitive function and asked if they could do tests- Dr. Kendall totally understood Abby's fears, but said to think about cancer- is it possible that Abby's Dad could develop cancer in the future? Of course, but if there are no signs or symptoms would we start testing? No.

So here is our judgement- I notice that lots of kids have tons of "baseline" appointments. They go and have each body system tested and monitored at least yearly, even if there is no evidence of any issue. Or the issues are quite minor and can be dealt with by a primary care dr.- I wonder why in the world would these parents drag their kids appointment to appointment- I mean I have heard of 15 appointments in one week! Heck, Abby hasn't had to energy to shower two days in a row in months- It would certainly trigger progression of her disease to haul her around! I found myself judging them- why would they risk their children's health this way? Don't they recognize that using their child's energy that way is leaving them worn out and susceptible to every germ?

I hear you screaming at me from your monitor to mine! I did catch myself making this judgment and had to force myself to STOP! It took a long time but I made myself look at my family from the eyes and shoes of those families who have frequent dr. visits. I suspect they judge us too! I think they probably think I am a bit neglectful for not being more agressive. They probably think that if the Dr. says to do yearly followup that when we don't we are leaving Abby at risk. They probably think these specialists can catch a problem before it becomes out of control, which if they can nip an issue in the bud, they can avoid more crashes in energy. I suspect also, that a lot of kids/teens don't have the SAME Mito Abby has- I can totally get why Dr.s judge- because the symptom list is lengthy very complex and often invisible. Where Abby can barely find the energy to shower and dress, the next patient with Mito may have no problem with energy unless they have a cold, or their blood sugar is off.. Some Mito patients just deal with massive and chronic pain... the more I read the more bewildering the combination of symptoms are- not even the best Mito Specialist has seen it all.

I suffer from a bad back- I hear you all nodding in agreement remembering spraining your back, or that ache in the morning, but I have a really bad back- all the disks have been herniated, I have bone spurs pushing in on my cord, I have bone on bone, nerve entrapment, I have tumors causing me pain. You have two choices when you have this many spine issues- either start doing surgery or learn to cope. Most of my friends with this much wrong with their backs will do surgery when their Dr. says they should- and often it does relieve them of some pain. But spine surgery with my level of issues means in 5-10 years(or less) the surgery correction will start to cause it's own issues- so I would be having surgery to correct the surgery and the spine.. If I get to the point that I am unable to pee or walk, I will have surgery, but until then I deal with it. That is my choice. I know I have friends that either think I am a wimp because I complain but think I must be exaggerating because if it was that bad, wouldn't I have already had surgery? and I have judged some of them, because I think they are wimps or too trusting of a surgeon because don't they realize that once you have one spine surgery you may get a reprieve for awhile, but sooner or later you will need another surgery to fix the issues the first surgery caused??

Mito is the same as my back- it is IMPOSSIBLE to make assumptions, to even begin to make judgements on someone else's Mito journey.

The one thing I have HATED the most with Abby's mito journey is friends,family and Dr.s assuming they know more then Abby or I about how Abby's body is functioning, yet I have caught myself judging other Mito families. My New Year's resolution is to learn to listen without judgment. No easy task, but if I can take the time to remember what it feels to be ignored, not taken seriously, or judged, I think I can improve.


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