I thought I was normal. Everyone has a few things wrong with them. Growing up, the only thing that was “wrong” with me was that I had bad eyes, lots of cavities and flat feet. So I really wasn’t so “sick.” There were times as a kid when I would be standing and I’d turn just right and I’d fall on the floor. I marked that up to clumsiness. My cavities were because “I didn’t brush enough.” Some people just have flat feet, so I wore orthotic inserts in my shoes. I had some aches and pains, but doesn’t everyone?
I was 14 (1988) when the reality hit me that I may not be like everyone else. My back was hurting during afternoon classes at school. I went to a private school, and my first class after lunch was Spanish and there were only 4 in the class. It was so long ago, but I remember having to either stand up or lay on the floor during that class.
Then when I was 19, (1993) something happened and I couldn’t straighten my back up. I was bent down / over and I was in so much pain – I was screaming. I was milking cows at the time and the farm lady brought me to the hospital. They x-rayed my back to make sure nothing was broken, but I quickly figured out what that pain was and how to put my back back into place from a physical therapist just a few months later.
The next few years were spent trying to figure out why I was having joint pain and why my back was coming out. It seemed like no one had any answers and nothing they were doing was helping so I just stopped letting the doctors poke and prod me. (1996)
Ibuprofen, heating pads and my bed were my best friends over the next 10 years until it got to the point where I was taking 4000mg of ibuprofen a day. I was to the point that I could no longer work. (2006) I wasn’t giving up and was trying everything I could to work a few hours a month from home to help contribute to the family finances. I knew I couldn’t go on much longer, so I started turning to doctors again to find out what was wrong with me.
I didn’t know where to start. It seemed like there were so many different, weird things wrong with me – not just the back pain and the joint pain, so I started making a list that I brought to each doctors’ visit with me. For years I went from doctor to doctor to doctor explaining to them my symptoms and asking them to find what was wrong with me. I found a few answers along the way to explain a some things. I found out how to manage the neck soreness that I kept getting. The urgent-care called them tension headaches and if I took some pain medicine and a muscle relaxer, it would go away. I had quite a bit of luck at the University of Chicago, Pain Clinic. An OB doctor found that the scar from my last c-section (2002) had kept going and stretching and had scared my uterus to my abdominal wall and had surrounded my bladder in-between. That answered why my periods were so painful. He scheduled a hysterectomy (2009) led by him and a Urologist, careful to only take the follicles of my ovaries to leave my hormones since I was so young. (I had had PCOS).
Most of the doctors treated me like I was insane. They made me feel like I was some crazy lady who had no idea what I was talking about or that I was making up things. I ended up crying, discouraged, defeated and ready to just give up again. Not every doctor was heartless. In the middle of my searches I found a doctor (a rheumatologist) that was my saving grace. He listened. He believed. He was patient. At then end of my tearful plea, he asked me what the MRI of my back looked like. If that was the major complaint of pain, what did it look like under film? I told him that no doctor had ever ordered that test. He was dumbfounded. On the day of meeting with him to go over the results of my first MRI (2008), I had in my mind that there would be 1 of 2 possibilities: either he would be like all the other doctors and tell me (or hint at) that all this pain was in my head, or I would find why I’m in pain. He told me that I am walking around with an 80 yr old back. He said that I have 4 vertebrae where the discs (where normal is to be as thick as jelly donuts) are as thin as cardboard. Spot after spot on the screen he kept pointing out where there are spots where my nerves are pinched.
My pain was finally validated. I had a doctor that believed me. He tried to find the root cause of so many other symptoms to no avail, but he treated each symptom and believed me no matter what I brought to his attention.
Another doctor, in a crazy, strange circumstance in March of 2012 diagnosed me with Ehlers-Danlos Syndrome, type III (hypermobility syndrome). A geneticist confirmed the diagnosis in 7/2013. I finally had the answer to the question that I had been searching for for so long. It’s not the answer that I would have liked…. I wanted something that a doctor could solve with a procedure or a medication and I would be restored back to normal. After I cried and came to terms about the progressive nature of EDS, I then had to mourn that this is a genetic syndrome and I had most likely passed it onto my 3 boys.
So for the last few years, I’ve been seeking the best quality of life through procedures and exercise and medication to be able to live as close to “normal” as possible. I’ve had to be my own advocate and I’ve had to become an expert in EDS because there aren’t many doctors that know about it and they often try to solve my health problems with something that would make my condition worse. I have a homecare aide that comes to my house every week for a few hours and helps me with anything that I need and when she isn’t here, my boys help me with anything else that I need.
I don’t know what the future brings. I know that someday I will be in a wheelchair and probably bed bound. I have had every procedure that they are able to offer me and I now just take
One Day at a Time.