Have you ever looked back at things or events in your life and thought “wow, I’ve been a mess for a long time”, “this sucks” and then wondered “why the hell have I put up with this crap so long” and then you realize you have been screaming for help forever only no one was listening, no one was paying attention and no one seemed to really care. No one listened. The doctors insisted it was too rare. Just because it is rare doesn’t mean it isn’t real.
I first started crying for help when I was about twelve and got my braces. I am yet to meet anyone that had braces as long as I did. Five years I spent pulling my cheeks off my braces every morning. Dental crowding was the first sign of my “rare diagnoses.” I had multiple teeth removed, from wisdom teeth to molars, that were impacted within the jawbone. The pain meds never seemed to help much.
Then as I entered my teen years I was always dealing with pain in my legs. I was told it was growing pains. I was told to toughen up. The pain was so deep and didn’t seem normal but I was repeatedly told it was growing pains. I don’t remember my sister or other friends enduring the kind of pain I did.
When I turned 21 I suddenly developed horrible cystic acne. I was devastated. I had perfect skin and suddenly I was plagued with this painful and embarrassing skin condition that nothing seemed to help. Even though I tried everything nothing improved it. It seemed to be a problem no doctor could solve. The best result was simply not making things worse. Some how I won over my amazing husband. How he saw me through the cystic acne still has me baffled.
Over the next ten years I continued to get sicker and sicker. When I was twenty-two I was rear ended by a drunk driver. This accident ended my military career. I was medically discharged from the US Navy with a 10% disability rating. This accident was the beginning of constant chronic pain in my low back, hips and legs. The military doctors gave me muscle relaxers and pain meds. However, I didn’t want to live feeling drugged so I learned to live with the pain, only taking the medication when I pushed myself too hard and was left with unbearable pain that I couldn’t just live with.
Shortly after being discharged I became pregnant with my son. Let’s just say pregnancy was not easy for me. I have a fear of throwing up (passed out twice from fear) and now I was throwing up daily, multiple times a day. How is it one can gain weight even though they can’t keep anything down? It wasn’t long before I found out I was having twins. I was in and out of the hospital because I was so sick.
When I went to my regularly scheduled ultrasound at twenty-two weeks I found out I had lost one of the babies. They tried to induce me early because my son was so large. No, I did not have diabetes. but I did develop pre-eclampsia. After a long weekend being induced I went home with no baby. He came on his due date and the spinal block they gave me didn’t work. Still no one put anything together. Two years later I became pregnant with my daughter.
This pregnancy was even harder than the first. I was put on bedrest for six months. Though I was able to eat and keep more down I still got sick daily. This time I lost weight. With my son I developed pre-eclampsia the two weeks before his due date with my daughter it was much sooner. My pregnancy with her was considered high risk and I had weekly ultrasounds. Though I was seeing my doctor more often and having ultrasounds regularly it wasn’t until several years later I learned I was dealing with some more serious health issues.
I was twenty-seven when I had my daughter. By the time I turned thirty I felt like I was going to die. I knew in my heart I shouldn’t have more children. Now I was experiencing horrible menstrual cramps that became more and more debilitating. My back pain was getting worse too. It felt like I was going to doctors all the time. I was seeing a gynecologist every few months with symptoms of fatigue, weakness, back pain, severe abdominal pain. Symptoms that were keeping me from being the mom I wanted to be. Chiropractic care didn’t help either. I was looking for anything that could help.
When I turned 32 I decided to get a breast reduction. My pregnancies had caused my breasts to enlarge from 32 C to a 36 K. You read that right. I was hopeful that the reduction would help my back pain. The surgeon took one look at me and said I would be approved through my insurance. So I had my first major surgery. Though this surgery probably was not my first significant indication of my “rare diagnosis” it was the first time that things happened to make me realize something wasn’t normal.
My surgery went well but the doctors struggled to get me to wake up after my surgery. My recovery in post-op took much longer than it should have, then I did not come out of the post-op haze for three days. Then the unimaginable happened. Everything came apart…literally. A couple days after my staples were removed all of my sutures came apart. All of them! The surgeon had no idea why. His best guess was that I had an allergic reaction to the sutures. The next several weeks were spent healing from the outside in. Leaving me with large paper thin scars.
Though the breast reduction helped my back pain some it continued to be an issue. My monthly cycle exasperated my back pain and I had started having subluxations of my hip now. I spent years going to the doctor trying to figure out why I was in so much pain every month, why I had no energy and just felt like crap. When I finally switched doctors and found out I was on the verge of hemorrhaging and that I was severely anemic she insisted I needed surgery right away. My time for other options had passed.
After my surgery my doctor came in and told me she was shocked I had children at all. She said they were my miracle babies and given the condition of my uterus from the fibroids and end stage endometriosis I should have never been able to have kids at all. That explained why my pregnancies were so difficult and why I never bounced back after delivery. It also explained why the pain continued to get so bad. Though my doctor tried to save my ovaries during the first surgery a year later I ended up having both my ovaries removed. The endometriosis continued to proliferate and basically took over my abdomen, adhering to my intestines and ovaries.
Figuring it out
I’ve since learned that endometriosis is common among those with “my rare diagnosis” I’ve also learned that the dental crowding, cystic acne, surgical complications, paper thin scaring, local and general anesthesia don’t really work, constant joint and back pain, along with the subluxations and or dislocations are part of life with “my rare diagnosis“.
The almost fifteen years since my surgeries I have had some over all improvement in my health. I went to school for Diagnostic Medical Sonography and though I had joint pain, sprains, and subluxations of my ankle, knee, hip and recently my shoulder. I accepted it all as just part of my weird body and life especially since every time I brought it up to my doctors I was dismissed.
It wasn’t until this past year after going down in the hall of the hospital because of what I describe as a visual disturbance that I decided I was going to start paying attention, stop ignoring and get my health figured out. I’ve had tachycardia for as long as I could remember, showering exhausted me, I occasionally would get flushed or would notice a rash. Sometimes I would get unexplained nausea, even vomiting or sudden intestinal upset. Then I started experiencing dizzy spells that could not really be explained and tinnitus.
Multiple doctors refused to help
I brought all these things up to my doctor and because I work in the medical field diagnosing others I requested very specific tests. The response I received shocked me. The first thing that happened was the doctors looked at my long list of symptoms and asked me what three things I wanted to address. As if addressing only three symptoms without addressing the cause was going to help anything.
The second thing that happened, I was told most of the tests, tests for mercury poisoning, tick borne illnesses and others were not common problems and that they would not do the tests. There were a few things they were willing to do and they did them and then I was dismissed. There was no come back in. There was no let’s figure this out. Just no we will not test for that, that would be incredibly rare and then good bye.
So you know what I did. I went to 2 more doctors. I got the exact same response. Exactly the same. Because I work in the healthcare field and because of prior personal experience (remember the emergency hysterectomy) I had learned there are too many doctors out there that just aren’t very good. We put our lives in their hands but honestly many of them are just there for a paycheck. I also know that there are a few really good ones and you just have to find them.
Zebra’s may not be common but they do exist
I finally found a doctor that would listen. Actually she is a Nurse Practitioner. She listened, she did all the tests and even sent me to a geneticist as I requested. Guess what, that rare condition that all the others said they wouldn’t test me for is exactly what I have. I have Ehlers Danlos Syndrome. It is a rare connective tissue disorder.
Unfortunately, often comorbidities come along with it that are just as rare and misunderstood by the medical community. Mast Cell Activation Syndrome/Disorder and Dysautonomia most often POTS, the trifecta. I have the trifecta but instead of POTS I have a different dysautonomia called neurocardiogenic syncope (NCS) is why I went down in the hall at the hospital.
Ehlers Danlos is a complex disorder. It is genetic so there is no cure and it is very misunderstood by the medical community. That is why I went into so much detail about my story. I hope my story can help someone else looking for answers. If you see yourself in any of this please don’t give up hope. Keep searching for doctors that will listen.