A beast. That’s what chronic illness is. It’s an evil fiend that breaks into your life one day and changes it all without warning. Leaves you hurt, confused and not knowing where to turn. It takes from you; your health, energy, time, patience and even friends.
We’ve been fighting the worst kind of beast for almost two years. One that has no name. When you don’t know what to call your illness, it’s not only frustrating, it’s almost like it doesn’t exist. And, it’s confusing to others because they don’t really understand why you can’t get a diagnosis. Doctors are smart, right? They should be able to figure it out. We had to learn the hard way that doctors don’t always know. Some don’t care and if you don’t fit neatly into a little box that they understand, they can’t help you.
Last month, we got a letter in the mail that our neurologist would no longer see my child because I didn’t agree with her treatment methods. I found the letter rather interesting because she wasn’t treating my daughter and I filed a complaint with the hospital that stated that (of course they responded that she did nothing wrong). She refused to see my daughter in February after I expressed concerns after a lumbar puncture that leaked for 11 days before being patched. We took Rosie to another hospital to put our minds at ease. In July, we were told that our regularly scheduled visit with her would be with a nurse. She wouldn’t see my child. Then we got the letter.
Over the course of five years, we spent approximately 15 minutes twice a year with our old neurologist. While she did recommend Biofeedback and counseling to help my daughter deal with the pain issues associated with migraines, the majority of our visits were talking briefly about how nothing was working and then she’d give us a new prescription (two of which made my teen depressed). When we finally were accepted into the pain clinic, her psychologist said to my teen, “don’t you want to be normal?” The year that my daughter started spitting up blood, she deferred any changes to her migraine protocol because we had “other problems.” Last year, when my teen was diagnosed with Amplified Pain Syndrome, she changed the way she treated my child which is why we couldn’t be seen. She told our physical therapist, “it was just pain.”
So, yes, I confess. I didn’t agree with her treatment methods. After talking with other parents that dealt with her, it was confirmed for me that she basically had one way of treating patients. She’d go from protocol A to B to C and if it didn’t work, she didn’t really alter the path. She certainly didn’t want to know the patients because they were all the same. That’s where she’s incredibly wrong.
My child wasn’t the same. She was fighting the beast.
My teen doesn’t just have migraines. She has POTS, PLEVA and for some reason has been spitting up blood since December of 2104 and no one can figure out why. In two years, we’ve seen Pulmonology, Gastroenterology, Rheumatology, Opthalmology, Hematology, Nephrology and Cardiology numerous times. We’ve seen three different neurologists. We’ve been to the Mayo Clinic. We’ve had too many tests to count, taken our blood pressure a million times and my teen can probably draw her own blood. Yet, no one could name the beast.
Last year, we thought we got close with the AMPS diagnosis. However, it was very quickly pointed out to us by a physical therapist that Rosie didn’t have all the symptoms. That her pain issues came and went. And, it had no explanation for the blood.
Yesterday, we had our appointment with our new neurologist. Ten minutes into the conversation, he did something that no specialist has been able to do. After a few questions, he diagnosed my daughter.
He named the beast.
Our beast is called Ehlers-Danlo Syndrome which is interesting because Rosie and I talked about it a long time ago and figured that since Rheumatology didn’t catch it, she didn’t have it. She does. It’s a group of disorders that affect the connective tissues and it’s genetic (also interesting because Genetics said they couldn’t help us). Every type has a couple of things in common- hyperextensible joints and skin issues. While it’s not common to have two types, there can be overlap. So, while Rosie has the Hypermobility type, she also has some vascular issues which can explain the blood.
Here’s the good thing about having an answer. We now know what it is and after she has and X-Ray, three MRI’s, an EMG and a sleep study, we’ll have a plan on how to treat it (for the record, it’s common for EDS patients to leak spinal fluid. I’ve been saying she is all along). Here’s the bad thing. Unlike POTS, which you can outgrow (she hasn’t. She was tested again yesterday and her blood pressure went from 120/90 laying down to 75 over mostly dead standing up), she can’t outgrow this. It’s part of her and will always be there
It will always be her beast.
We’re amazed that no one could figure this out before. Stunned actually. We’re adjusting to the fact that the beast has a name and we’re confident we’ll have a plan in place within a month when all the tests are back. She’s been battling a two-week migraine for no reason, so we’re hoping that the MRI’s will give us some kind of answer. But, for now, we’re just glad to have a neurologist spend so much time with us and actually want to help us. We haven’t had that.