That pretty much sums up my life right now. I've been many things in my life, but these are the two things that permeate my life now.
Ehlers-Danlos - I believe that EDS is the most silent of all silent disorders. It's a rare genetic disorder, my body does not make collagen correctly, so any tissue that has collagen in it is weak. That means just about every tissue in my body is inferior. My joints are loose, most people call it being double jointed. Both my shoulders and hips have dislocated several times. My skin is very fragile, it is easily torn and takes a long time to heal. The dentist tells me that he can't believe how soft my teeth are. (I'm in the process of replacing them with dental implants-very expensive!) I have high arches in my feet, but when I stand on them they go flat and hurt. But EDS is alot more than just weak tissue. I have chronic fatigue, chronic pain from my muscles trying to keep my loose joints in place, my blood pressure is all over the place, I have mitral valve prolapse, dysautonomia, some gastrointestinal issues, thyroid issues and a few other things. There are others who have even more severe issues than I do. I was one of the lucky ones. The effects of EDS did not disable me until I was 50. I was able to earn a degree (Master's), marry, raise four kids and teach junior high for 20 years. My children have not been so lucky. All my children have it to varying degrees. I have met others who in their teens and twenties are using canes and wheelchairs or cannot finish a college degree.
I'm also lucky that it only took me five years to get a diagnosis. They say it takes an average of 7 to 10 years to get a correct EDS diagnosis. I had my share of doctors eyeing me suspiciously when I complained of the disabling pain I was experiencing. Nothing serious showed up on the (millions of) MRI's, so, surely, I must be seeking drugs or attention. I am grateful for a doctor that gave me a hug and said,"We're going to figure this out." Diagnosing EDS is one hurdle, treating it is another. What I hear from doctors is, "I remember studying EDS in medical school, but I don't know how to treat it." Again, I am grateful for a Pain Spcialist and now a Primary Care doctor that was willing to learn how to treat EDS with help from me.
I'm a Mormon - I bring this up here because my being a Mormon (Church of Jesus Christ of Latter-Day Saints) helps me put my issues with EDS in perspective and gives me hope. I know that I have a Heavenly Father. I know that Jesus Christ is my savior. I know that there is a plan for me on this earth and that Heavenly Father is very aware of what I go through each day with EDS. I know we lived before we came to this earth and that this earthly experience is to teach us how to be more Christlike which will enable us to return to Him someday. I know that Heavenly Father could remove the pain I feel everyday, but I live by faith that the reason he doesn't is that there is something for me to learn and gain by this experience. I also know that there will someday be a resurrection where after I leave this earth, my spirit and body will reunite, but it will be a whole body free of EDS. I can't wait.
I was pondering these things a few days ago and began listing all the blessings I have gained because I have EDS. When I first learned I had it, I wanted to talk to others who had it. I went to the internet to try and find support groups - none. My doctors were no help in connecting me with others because I was their only patient who had it. I found that there had been a group here in AZ at one time, but was no longer in existence. I contacted the national foundation (EDNF) and they gave me a few names that I contacted. That was two years ago and I am now president of ArizonaEDS and have formed some very precious relationships with others who have EDS. I have traveled to Baltimore twice to attend the annual EDS conferences and have been able to meet with doctors who really understand EDS, not to mention meeting others around the world who share my experience. I don't feel so alone anymore - that's a huge blessing. I have learned effective ways to cope with EDS issues that I teach to my doctors and am able to share with those in our support group. They also share with me what they have learned. I am more compassionate toward the disabled, I now have a working knowledge of what they may go through each day. I also am more vigilant in defending my and my children's and grandchildren's right to have access to the medications, procedures and doctors that can help us so that we do not need to suffer needlessly. I had to take early retirement from teaching due to EDS and that has turned out to be another huge blessing. I have been able to spend some precious time with family (especially grandchildren) that I had been too busy to do before. I go at a slower pace, I get to enjoy pursuing my hobbies, I am alot less stressed. I have no right to complain that I have been given this burden, it has blessed my life in so many ways. I'm thankful for a Heavenly Father who gives me "tailor-made" trials knowing that it will make me more perfect.
No comments:
Post a Comment