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Saturday, October 12, 2013

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.

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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