I have learned a very hard lesson recently and I wanted to share what I learned with other moms who are caring for an ill child, whether it be EDS or anything else…
So, I have made myself as knowledgeable as humanly possible about Ehlers Danlos syndrome. This thing has come into our lives and is ‘attacking’ my family and I want to know as much as I can to defeat it. It doesn’t take much study to surpass the knowledge of most doctors – that is an unfortunate fact of life for EDSers. We must be our own experts. I am pretty good at that.
I have done countless hours of research over the last year and a half. When we are referred to a specialist, I make sure I am up to speed going into the appointment. I have bragged to family and friends that I will never walk into an appointment without knowledge on my side – I will always know every possible test that may be ordered, every medication that could be prescribed, every course of treatment that could be suggested. A specialist will never surprise me because I already know what to expect.
Beyond that, I know which specialists we need to see and what needs to be done at any given time to insure my daughter gets the best care. For example, by the time we got to Dr. Tinkle to get a diagnosis, Em had already been in PT and OT; we had ordered a couple silver ring splints; we had had an ECHO done to rule out heart problems; we had a Brain MRI done to get to the bottom of the neurological symptoms and we had an appointment with a local neurologist set up. I research and determine what needs to be done and we request it to be done. With my daughter’s condition, I am amazingly proactive.
With my own health… not so much. I have struggled with kidney stones for 8 years or so – an almost constant source of pain. I had one jerk doctor blow me off in the beginning, so I shrugged my shoulders and stubbornly decided to deal with it on my own. My method largely consisted of ignoring the whole situation. That seemed to work for a long time…until this past spring. Severe pain and nausea hit. I went to my daughter’s PT/OT eval at Cincinnati Children’s in severe pain because I couldn’t not go. For almost 5 months I battled what I hoped was a stone. In the back of my mind lingered the possibility of something more serious, but I really didn’t want to know. I focused on my child and ignored my own health.
What did burying my head in the sand get me? A 7 1/2 mm stone that I had no chance of ever passing on my own, two surgical procedures, a couple days in the hospital, plenty of additional pain and suffering, and a bill that will probably end up around$40,000. (Yes, we have insurance that will cover it, but STILL!)
Now here is the irony I see in my own behavior…
With my child’s health, I am a momma bear. With my own health, a teddy bear at best – and a pathetic one at that!
If a doctor looks cross-eyed at my kid, he is fired and I find a new doctor. One doctor treats me like crap and I go home and suffer for 8 years.
I know every possible medication my kid could be prescribed and the side effects that could occur. Apparently there are medications that can dissolve and prevent kidney stones. Did I ever look them up, find out what I could do to relieve my suffering? Nope. Never.
How utterly ridiculous is that? I knew better but I just allowed myself to fall to the wayside. My worst fear is having something happen to me and leaving my kids without me to care for them, especially my daughter right now. But it took an emergency to make me face my own health issues. I would never, ever allow my child to be treated the way I have treated myself.
So, the lesson I learned (the hard way!) is that I really must take better care of myself if I want to be there for my daughter. All of those days I was struggling with a kidney stone attack, I wasn’t fully able to be an advocate for my kid. Those days that I was in the hospital after my 2 procedures, I wasn’t there for my kid. During my recovery, I wasn’t really able to take care of my kid. I am fortunate to have a mother who stepped in and helped for a couple weeks. But, if I want to be able to do my job – i.e. taking care of my ill child, I need to take my own health seriously.
I am clearly not the most qualified to preach this and it is totally a case of ‘do as I say and not as I do’. BUT… moms, take care of yourself. Be proactive with your own health and make yourself a priority. Expect treatment of the same quality as you demand for your child.
I have now looked up the medications that I may be offered, as well as various home remedies. I have a follow up appt with the urologist in Nov. and some tests to do before I go back. I am trying to make sure I stay well hydrated and generally trying to take care of myself.
Some lessons have to be learned the hard way but I think there is hope for me now!