Health- troubled
All I want to do is sleep... but something keeps waking me up.
In February 2010 I was diagnosed with a large septated ovarian cyst that keeps leaking then patching the leak... not bursting but leaking. They decided that it had to come out, but my (then) Primary Care physician was very concerned with my history of anesthesia issues and the fact that I could not take any medications so insisted that I visit and be cleared by a myriad of specialists to be cleared for surgery. That process took 6 months when the GYN surgeon wanted it out in 3 weeks.
Finally a surgery date was set for September 13, 2010... then my husband lost his job on August 27, 2010 and our insurance ended on August 30, 2010 (the insurance ended on the last day of the calendar month of employment termination) so the surgery was canceled. I was devastated because this thing (which I named "Cletus") causes daily pain from the leaking.
It took me 2 months to find a program that I could use to get treatment and another 5 months to see a GYN in that program and after months of going to that Doctor it was decided that I am too big of a surgical risk to have the cysts (there is now more than one large septated cyst, at last count there are two large septated cysts and a small unknown mass in my liver) removed... so they want to 'monitor' them.
Fine and dandy for them... but I cannot take so much as a baby aspirin for the pain (thanks to my Gastroparesis and stomach damage from ulcers) any anyone who has dealt with ovarian cyst pain can tell you that it can be extreme.
The daily pain I have learned to deal with... but every once in a while (like now) the pain flares... it feels like my abdomen is being ripped open from the inside... the skin actually feels like it is tearing, hot, sharp and 'acidic' (like acid being poured into my abdomen).
I try to sleep, because I am so exhausted... so drained... but I will awoken by a slashing pain in my abdomen that literally rips me from sleep... but I will fall back to sleep, almost pass out, only to be awoken again.
I want to be able to go to the ER... I want to 'know' that if I go in they will 'do something', but I know from past experience that do go in they will do a few tests then tell me 'it is your cyst, see your Doctor" and release me and the only thing I will accomplish is spending money for gas.
Now I am wondering if the increasing brain fog and exhaustion is from an infection in my abdomen, but even if it is there is nothing they will do. I have an IgG deficiency and something called 'lycopenic response with a shift to the left' which means that my body does not respond normally to infection. Normally infection will cause an elevation in temperature and an elevation in white blood count... but not for me. I will not run a fever with an infection, no matter how severe, and my white blood count does not rise in response and the white blood cells that are released will be immature. The best I can hope for is a single IV of antibiotic and a prescription for oral antibiotics that I would not be able to take and a recommendation to 'see your doctor'.
I wish my Gastroparesis had been diagnosed in time to prevent the stomach damage... ulcers caused by pills sitting in my stomach so long they ate into the lining of my stomach over and over. I wish that my Gastroparesis had been diagnosed in time for me to at least try one of the medications for treatment. I wish that I did not feel so let down by medical science and the failure to diagnose due to ignorance of a common condition.
This is why I am doing this blog... because it took over 20 years for me to get a diagnosis!
I do not want anyone else to go through what I have... to be stuck where I am... I am not raising Awareness for me... I am raising awareness for those out there who are just starting to show signs, so that they can be diagnosed and properly treated early enough to maybe make a difference in their lives and quality of life.
Everything in my life is affected by Gastroparesis... the ventricular tachycardia attacks I have (had a major one today that lasted over a minute) that cannot be treated because I cannot take the medication to treat it... the ovarian cyst pain that cannot be managed... the ankle and knee pain that cannot be managed... the malnutrition... none of it can be treated or managed due to Gastroparesis.
Yes... it can happen to you... it can happen to someone you love... without warning and often with no known cause.
This is why I drag my laptop out daily, no matter how bad I feel or how much the simple act drains my last reserves of energy, not because it is happening to me... but because it could happen to YOU.
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