LIVING WITH ADDISONS DISEASE
My Healing Witch
Poor care, poor care and more poor care
Okay, I have Addison's Disease. It is quite lovely, your skin turns dark, you lose weight and die. I didn't die. The Big Kahuna In The Sky, (no worries my Christian friends, God isn't his name either.) my spirit guides, the Healing Witch and one worn out Guardian Angel and I had a long talk. I made a deal. If they took care of my kids, I would go ahead and die, if not I would live. I think they took a look at the situation and decided they didn't want to deal with those two. Hence, I am here today.
I noticed the symptoms around the time of 911 and blew them off. I lost a LOT of weight, turned dark enough for the ER doc to think I was Hispanic and dyed my hair. I have blue eyes and naturally gray hair so I guess he thought I was a genetic throw back. But I progress, not digress, I assume that is the correct wording.
i went to the same doctor for a year and a half. Had tests out the wazoo, complained that nothing helped and he decided I was nuts. I was put on Prozac. My husband took me on a cruise to Belize, the place of my dreams. Trying to make Gracie happy. Gracie was sick and did not want to be made happy. She wanted to be made well.
As I had been doing at home, I promptly fell in the bathroom, smacked my head on that little thingy at the shower stall opening and broke my tailbone. if it had been filmed, You would have seen my 300+ pound husband in a tiny little bathroom trying to pick up my 95 pound body. He dropped me in the bedroom area. I tried to get up, fell again, he tried to pick me up and wound up dragging me to the bed. Picking up dead weight is not his forte. I spent the rest of the cruise eating room service and watching "My Big Fat Greek Wedding" over and over again. Not fun but not bad either. Room service is a good thing.
I had been passing out if I got up to go to the bathroom, get dressed, etc. My co-workers were sure I had cancer and was going to die before their very eyes. I held on to the walls to walk. People were nervous when I was in a room with them. I mean, I could have been in mid-sentence and croak. Then they wouldn't have been able to hear the wealth of information I could grant them.
I had the good sense to change doctors. (After a year and a half of recurrent pneumonia and hospital stays) My new doctor was and is a life saver. I also had the good sense to go on line with my symptoms and blood test results. I diagnosed myself with Addison's Disease. I had low thyroid function and my idiot doctor had put me on synthroid, exacerbating the adrenal gland failure. By the time I saw my Life Saver I had no blood pressure. It was force of will that I went for the blood tests she ordered. She had told my husband to take me directly to the ER if I fainted. I thought that was silly since I had never passed out and used to give blood. I passed out. Off to the ER. I was looked upon as another crazy middle aged woman until the doctor called and told them I was in bad shape. My husband half carried me to triage where my BP was 70/36. Pretty much dead, finito, gone, off to the big beyond and I didn't mind at all. It doesn't hurt to die, it hurts to live. After I had the IV of my best friend, hydrocortisone, I was a totally different woman.
The lady I roomed with was old and in renal failure. The hospital I was in was understaffed and harried. They would strap the lady into a chair and if she screamed, didn't listen. I got my skinny butt out of the bed, drug my IV and heart monitor with me, unstrapped her and took her to the restroom. As far as I had seen they never let her have enough time to take a poop. She felt much better and got into her bed with no trouble. By the time the nurse walked in, I had her drinking water, promising i would always take her potty.
She was restless one night and the staff couldn't control her. I told them to take her to the nurses station, let her out of the room for a while and see what happened, it was a miracle. She cooperated. I have medical training and wasn't afraid of getting "in trouble" with the nurses, I was afraid of losing that little, tiny lady to poor care. What a messed up world we live in folks. Take care of those you have in the hospital. Esp. if they cannot speak up for themselves, AND BE HEARD.
Back to the crap I have. The doctor who saved me was a woman with her medical degree, very smart and hated the health care system. She quit the hospital and went into holistic practice. She is well known in our town, She should be.
By the time the doctors "diagnosed" me it was six days into my hospital stay. I knew what I had and couldn't help thinking that they needed to go to WEBMD on the internet. Then I went into congestive heart failure, maybe. In comes the new, drop dead gorgeous doctor. He could have done anything to me and I would have thanked him. He did order a blood gas test that hurt like hell. Try to avoid those. Then I didn't have congestive heart failure. They sent me home, I was too much work. The nurse told me they really didn't know what to do with me, my blood tests were so strange.
I came home, and since have taken hold of my health, being maddening to too busy doctors and overworked nurses. If you know what you need, tell them. I had to tell them i needed steroids and voila! BTW: This disease usually attacks female dogs. Yes, I relate.
The Addisons is supposed to be something you live a full life with. They Lie! Hydrocortisone and lasix for the bloating turned into heart disease and a stent with more lifelong meds. The doctors blamed the steroids on my heart disease. I was 47 when I was diagnosed.
Then the hyperkalemia. (Very high potassium) More meds and no more potassium laden foods. No tomatoes, no potatoes, no chocolate, no wine. if I ate them, no me. It is no wonder I am on anti-depressants. The meds do mess with your head. Steroids make you fat and the right anti-depressant makes you lose weight. Cool with me, I could have more trouble with the old ticker and diabetes being as overweight as I was. I like to shop for me now.
I know I have been all over the place with this HUB but it is all related and all stems from one thing. POOR MEDICAL CARE. HMO's limit the time drs. spend with you. It limits their income, it also limits their focus. Hospitals trying to make a dime won't hire the extra help they need. To get the care for my heart I was in a much smaller town with one one cardiac group. To find the reason my heart was skipping beats I went back to a doctor who is far from my house. Not close like the killer doctor.
I don't trust anyone with my health or my money. You shouldn't either. They are about 95% of what you need to live a comfortable life.
Take care of yourselves out there, no one else can and most won't even try.
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