Saturday, January 28, 2012

Why it is what it is!

Today the sun is shining on the scant inch of snow that fell while I slept last night.  The sun streaming in the window is warm and very bright.   I am sitting here trying to decide what I should do today.  I am going to make this blog mostly about the projects I choose to tackle (cooking, creating, planting, experimenting, planning my daughters wedding....whatever).  But first, a little background.....

I have a condition called Ehlers-Danlos which has caused my body to hurt.  Most noticeably, the pain has been in my right hip and lower back for over a year now.  For most of my life I have lived with some sort of pain somewhere in my body.  I am still learning how to cope with it.  Ehlers-Danlos is a condition that that affects the connective tissues in your body.  Some of my joints are very loose because of this.   Most of my life the health issues that I have been plagued with have been a mystery.  Many times, I am sure, the doctors and people close to me have thought that I make things up.
In the summer of 2010 my youngest daughter (18 yrs old at the time) decided to discuss with her doctor some concerns about her own health.  Her doctor did some blood work and found some abnormalities that required further medical evaluation by a specialist.   We were sent to Children’s Hospital to see a hematologist.  About 15 minutes into the evaluation and history taking, the doctor exclaimed “I think you guys have Ehlers-Danlos!”  Further blood work was done and I was sent to a separate specialist.  Wow, after 43 years of living with so many weird issues, I was finally given a diagnosis that made sense.  And, all three of my children have been diagnosed with the disorder.  We are all learning to live with the chronic pain in our own way.  I am glad however, that my children will not need to live through half of their life with the not knowing what is wrong with them and questioning and being questioned as to whether it is “all in their heads!” like I had to.
My oldest child, a son, has had problems with his shoulders dislocating and has had one surgically repaired.  His other needs repair but he has put that off .  When he was younger he dislocated one of his elbows and a finger.  He lives in chronic shoulder pain.
My middle child, a daughter has had issues with her knees when she was younger.  She is an LPN now and finishing school to be an RN.  She has some back issues and some other female issues that are related to the bleeding issues associated with this disorder.
My youngest daughter is a professional caregiver for the senior population.  She has had terrible bloody noses and female issues both related to the bleeding issues and she has problems with her back also. 
Both of my girls need to take hormones to control bleeding as this disorder has the tendency to cause problems with the body’s ability to clot blood.  I will not go into detail on this aspect.  The disorder can also cause weak blood vessels and aneurysms. 
Most days are hard to get through both physically and emotionally because of the lateral problems that inevitably arise with any chronic health and pain issues.  For now I am seeking the wisdom to recognize, each day, the benefits of choosing to live another day breathing!