Today I was lucky enough to be directed to a group in Facebook that is for/about people who suffer from Chronic Pain. I have been suffering like that for the past 30 years but these past 10 years things have gotten worse and harder to ignore. In that group I posted My Story so they would understand where I was coming from. Since it took so much effort to pull all that together there I just don't have much left to write something else here. So, here is a brief look into my world.
Repost from Facebook:
My name is Kathy and here is My Story:
Trying to decide just where to start. I have had more aliments than I care to remember really. I still suffer with most or from treatments to rid me of problems. It never amazes me though just how few doctors will listen to you. In a way I've been lucky since I've been seeing military doctors these past 30 years and not that all are bad but most will go along with 80% of what you say is wrong. Amazing! So it seems it's always been up to me to find out what may be my problem and then present it to the doctor - if they feel that I may be right they will order the tests to check for it. I'd say that I'm right more times than I am wrong.
Mind you I've had those doctors you just want to slap! Back in 1993 I starting feeling weak, depressed, with pain everywhere. The slightest touch was excruciating! The base doc said it was Fibromyalgia (amazing that a doctor back then would do that) and he was/is right but he refered me out to a civilian doc who as time progressed and I had new symptoms appear(extreme pain my back and down my legs) just decided that it was all in my head anyway and he ignored me. Then it got where I couldn't pee. I'd sit and sit and just have to wait for it to start on it's own. So to appease me he refereed me out to a neurologist for tests. In the referral which I am positive he didn't intend for me to ever read he said to do this and that test and what ever else was needed to prove to me that nothing was wrong! What an IDIOT! The neuro did the tests and immediately sent me for an MRI, something very new in those days. Within days he called me and had set-up an appointment with a neuro surgeon - a couple of days later I was in the surgeons office - he took one look at the films and within an hour admitted me to the hospital within for surgery scheduled for the next morning! I had a ruptured/herniated disc in my lower back and he was just so amazed that I was even walking - he said it should have paralyzed me! So it just goes to show that if you fee, you know thatl something is wrong, by all means push and push until you get the answers you're looking for.
After the surgery the neuro surgeon expected me to seek a medical retirement since I had the surgery and suffered from FM. Silly me just could't do that then - I pushed myself for many years more until finally I am at the point I am today. Then I would have had the doctors behind me to push to qualify for disability but now that I am disabled I can't find a doctor who is willing to fight for me so I am stuck without any monies of my own and must live off my husbands income. I really hate that!! I feel like a parasite that feeds off him - slowly pushing him into the grave by working him to death. That takes me to an all time low depression which I find very hard to crawl out of. I do my best and often have a couple of days in a row where I feel pretty good, considering everything. But then slip, bam, and I'm back to staying in bed doing nothing as the world passes me by yet once again.
To date my problems are; Gallbladder inflammation which causes extreme pain in my right side to the point I can't breath at times. Severe depression from multiple of factors including stress from 9/11 (I worked with/at the Pentagon). Fibromyalgia(FM) which has so many symptoms I can't go into listing them . I also suffer from Migraines, Chronic Sinusitis, Allergies to dust, mold, pet fur/dandruff, IBS(Irritable bowel syndrome), Hiatial Hernia, GERD(Gastroesophageal reflux disease), POS (Polycystic Ovarian Syndrome)-I've lost 1 ovary from this, Uterine Fibroids-I've lost my uterus from this, degenerative disc disease-3 discs have blown to date - 3 discs removed and they drilled up the center of my lower spine, up from my tailbone to insert a rod, and then placed two rods on either side of my spine and multiple screws to hold those two there. I've had to date 3 surgeries just on my lower back alone. Nerve Damage that causes, Chronic parasthesia(burning sensation), Regional loss of sensitivity, Restless legs syndrome(RLS), Loss of sexual interest/desire(lets just say it's been years!) Plus some meds make me fall asleep for brief periods so I've given up having a car and driving and have to depend on others to bring me everywhere and to do most everything for me. I take about 30 different medications and supplements daily to take the edge off the symptoms and those meds of course have side effects - some of which actually add to the problems or are doing things to me that I have to have my blood tested every 6 months to be sure they haven't caused damage.
Whew... way too much - far too many. If it wasn't for my husband and daughter I would have cashed in my chips long ago. But I love them both too much to do something like that to them. I've lost most every real friend and alienated/disappointed every other family member - no one wants to hear your complaints all the time and eventually they just get fed up and leave your life. Being alone like that does the most damage I think. We're humans, social animals who need the love and companionship of others, we need to be held and loved and cared about. Yes, I have my husband and daughter - but the depression from losing everyone else just adds to the list of problems.
I am glad to those friends I've made online. But they get sick of hearing about it all also and tend to slip away in the dark of night, never to be heard from again. I know even we the suffers get tired of listening, even to ourself... mostly ourselves. We're sick and tired of being sick and tired. I'm sure there is more but one additional problem, I have trouble remembering things.
Bless you all - May your days be brighter and lighter very soon! {soft hugs}
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