Chronic Illness, Contentment

Accepting Chronic Illness

Monday, I received my official Ehlers Danlos Syndrome diagnosis.  The
last few days have been interesting, as my emotions have been surprising.
I have felt a huge sense of relief for finally knowing what is wrong with
me.  To have lived 51 years with a health problem like this, and to not
know what is wrong, is ridiculous.
For all the doctors who ignored me,
humored me, and tried to drug me up with anti-depressants: you really needed a
better education.  I don’t appreciate being treated like a hypochondriac,
a mentally weak woman, or worse.  I’m not a person who wanted
attention nor was a medication seeker.  I was just a person who has been
in pain for a very long time.
Chronic Illness

The geneticist, who diagnosed me, understood all the symptoms (many of them
a little strange) and laughed with me as I discovered the reason for it all was
EDS.  My collagen is just messed up.  Now, I still struggle to
understand the anatomy of this syndrome.  I was never very good at science
(I was a music major) haha.  This is an easy to understand
explanation on THIS BLOG:

She writes:

It
(Ehlers Danlos Syndrome) is an inherited connective tissue disorder, caused by
a defect in the way the body makes collagen. The faulty collagen makes the
connective tissue in the body weak and fragile. This causes the progressive
deterioration of the joints, skin, blood vessels, and organs. Depending on the
individual mutation, the severity of the syndrome can vary from mild to
life-threatening. There is no cure, and treatment is supportive, including close
monitoring of the digestive, excretory and particularly the cardiovascular
systems. Corrective surgery may help with some of the problems that may develop
in certain types of EDS, although the condition means that extra caution is
advised and special practices observed.

 

One thing I’ve learned, is to never
give up.  I ignored my aches, pains, and many other symptoms for years.
I had been in pain and suffered other problems for so long, I
just accepted this as my lot in life.  And, though my life hasn’t changed
by knowing, I’m still glad to know and realize that I’m not the only one with
this.  Over the last three years, I kept going to different doctors, until
someone finally figured it out.  I’m very thankful!
There is no cure, or treatment for
Ehlers Danlos Syndrome-hypermobility type.  There are things to do that
can help with some of the issues, but it’s all trial and error.  I was
told to read online and see what helps others.  Then, I’m to try and find
what helps me.  I’m sure this will be an ongoing adventure.  There’s
been no magic pill to take, so I just have accepted my illness and will do my
best to take care of myself.  I will continue to trust in God, who gives
me each breath.
@2013, copyright Lisa Ehrman

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