About Teresa: We don’t always have it easy, but who does? We’re a family and there’s plenty of love here. Living life on the spectrum with my son, Squeaker, and my three year old, Big Guy, presents all sorts of challenges, but it also presents us with all sorts of opportunities for growth and learning. I’ve come to realize my son and other people like him are truly special and that I am blessed to know them as people, not as their disabilities. My biggest message is that every day I get to Embrace both of my children, I feel blessed as a mother and I always try to see their beauty shining back at me. Read more from Teresa at Embracing the Spectrum.
I’ve spent years searching for answers. I can remember a conversation I had with my husband more than a year ago where I said to him, “I wonder if there’s something genetically wrong with me that just makes me predisposed to illness.” It just seemed at the time that I always felt like, well, crap. And I’d already been through the wringer, quite honestly.
When I go to a new doctor and fill out the list of medications and surgeries, I sometimes scratch my head and wonder if I’ve missed anything. I thank God for my Walgreens app, because it allows me to check what meds I’m on while I’m sitting there filling out paperwork. My surgeries started when I was only 2 years old. I’ve had a tonsillectomy, tubes in my ears, my gallbladder removed, arthroscopic surgery on my right knee, laparoscopic surgery for endometriosis, and the list goes on.
I always hated going to the doctor about an issue because I felt like a hypochondriac, but they seemed to affirm my fears every time. Sometime always seemed to be wrong with me. Hashimoto’s Disease, prediabetic, degenerative disk disease…you name it, I’ve got it. I drew the line at having surgery on my back, by the way, and the doctor agreed that I’m far too young to consider changing the structure of my back.
My hands and feet go to sleep, my whole body hurts, my memory isn’t functioning appropriately, my bowels started acting up, and I’m tired all the time, so I started investigating that. Who can effectively parent two children, manage a household, and then go to work with all of that going on? Well, after a normal colonoscopy and upper endoscopy, I figured I just looked like a huge hypochondriac with IBS. I continued going, though. I got a bunch of lab work done for rheumatology and Lyme Disease and, thank God, that came back normal. When I got to the rheumatologist, she did all of the tests for tender points for fibromyalgia, asked me what seemed like 500 questions, and diagnosed me with fibromyalgia.
What did I learn? Everything that I’ve experienced for the past few years of my life could be attributed to fibromyalgia. Sleep problems, widespread pain, TMJ, depression, pelvic pain, and digestive problems are all attributed to fibromyalgia. It makes me wonder why on earth no doctor ever suggested the diagnosis before. Why did it take me talking to a Health Coach through my insurance before it even got suggested? They would have done all of the tests I’ve already gotten done prior to diagnosing me anyway to rule out other health problems, but it leaves me frustrated because perhaps I could have known about this sooner.
But the problem is that the rheumatologist did nothing further to help me. She suggested I get more sleep and exercise. All of the medications I’m on already were medications she would’ve already prescribed. Apparently, I’m long-term sleep deprived and my pain and memory issues will not improve until I start consistently getting more sleep. I’m supposed to go to bed when my kids go to bed since Squeaker gets up sometimes at 4 in the morning and “forget about time with my husband” until they get older because sleep is more important. As for having time to wind down and time to myself? I guess that, too, will be foregone until teenage years, if it ever happens.
I guess the good thing is that I have something to call this feeling I have every day. I still feel a bit hidden in the darkness because I don’t want people to think I’m whining when I’m hurting. It’s hard to explain to someone something they can’t see or feel themselves. It’s just something I have to learn to cope with since I now know it’s not something that can be fixed. I know there are some great support groups online for fibromyalgia, but I haven’t explored them yet. Aside from that, I guess I’ll just pray that eventually getting enough sleep will not mean sacrificed time with my husband.
Do you have a chronic health condition? How do you cope with it?