Yesterday, as my two young children and I were walking, my four year old daughter asked, "Mommy, are you dying?" A lump instantly got in my throught. When I asked why she thought that. She said that I'm always tired and hurting. And that I don't play or go anywhere anymore. I had to explain that I am not dying, that my illness needs a doctor that can help me help myself, and that right now I can't find a doctor that knows how to do that. And the ones that do, don't have time for me. But yet at that time, I wondered if I were lying to them. As I've had an onset of more symptoms that are not part of my current diagnosis. And my Primary doctor agrees that I need to find a specialist that can make the time for me.
I don’t really know where to begin. Basically since I was a child, I’ve always lived in chronic pain and weakness. From one doctor to the next, they have different or multiple diagnoses. As a child, it started with “Growing Pains” -and at age 31, I’m not growing anymore unless horizontally. And now we are onto Fibromyalgia with possibly Neuropathy or another neurological disease. And from the Fibromyalgia I suffer several other ailments, including GERD, IBS, Chronic Fatigue, Sinusitis, Headaches, Memory Loss, Skin Rashes, food allergies and more. I make light jokes out of the problems, in fact I even literally bleed from the surface of my skin without reason, I tell others I have Stigmata.
This Fibromyalgia appears to be a mystery illness itself, resulting in a fight amongst doctors, insurances, patients and researchers. It feels as if no one knows what Fibromyalgia is, or how to properly treat it. This debilitating illness causes me to have to take each day at a time. Despite the pains and symptoms, I choose to not let it bring me down, when possible that is. I have two very beautiful children that I want to be a good mom to, and a great husband that provides the best that he can.
There are days where I’m in so much pain that vary, I just wonder why God would put anyone through something like this and not allow for any answers- and wish he’d just take me away because it can be so unbearable. The pain can be so intense & sudden that I’ve blacked out randomly.
The numerous doctors I have visited seem to continually disagree with either diagnosis or treatments. I’ve been from specialist to specialist, no answers or solutions, just many medical bills and despair. One doctor dared to say that I’m “Just suffering from Depression.” -Ask anyone, I’m generally a happy person, even threw all the pain I try to keep a positive attitude.
I have tried the medications but they don’t allow me to be myself and I tend to have all the bad side effects. I find myself often tired, groggy, in additional pain, missing out on my life and the lives of my children. I’ve also been encouraged to increase exercise and yoga. Which of course I do try, but even days where I’m on my feet for a “long” period of time, I have to be literally hoisted into my bed, or I settle for sleeping on a couch. So again, it’s that one day at a time approach. In my children’s early years, I was a stay at home mom by choice, now that they’re in school, I’m ready for more but my body physically can’t allow it.
Our local health care system apparently does not have a Rheumatologist, so I have to be referred out for treatment. Appointments for “local” specialists which are anywhere from 60 miles to 300 miles is at SIX MONTHS out. My primary suggested ruling one problem out at a time, but how can anyone handle living in pain and have an average quality of life when having to wait that long?
I am 31 years young, but move around as if I’m 71. This is no way to live at all. I believe that I have a long life ahead of me, and it should be a good one. I’m an advocate for myself, but treated as if I’m a hypochondriac by doctors. I’m missing out on the world because I’m bottled up in my home. Again, my quality of life is deserving of so much more than a “I’ll get by” or “I manage day to day.”
Those around me can’t seem to understand what I go through; and because of that, I do often find myself alone, isolated. This year I decided to embrace my solitude that this has caused me, rather than succumb to loneliness. It’s not easy, but I’m beginning to take on the solitude much easier. However, I want to find a path to be physically better. I need to find answers and support so that I can be a better ME, a better mom, a better wife and friend. I’m only 31 years old, I don’t believe that I should feel so crippled as I do. There has to be answers without bandaids- such as medications, which limit life with all the side effects. I need a true diagnosis of these mystery pains and illnesses.