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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Comments 27 comments

Green Lotus profile image

Green Lotus 6 years ago from Atlanta, GA

Gracie your story is amazing, compelling and very moving. It takes tremendous courage and wisdom to do what you have done for yourself and others. I agree that intuition and being proactive are the first steps one must take when facing illness especially a mysterious condition. I wish you continued wisdom along with happiness and of course, good health.


Gracie 6 years ago

Thanks Lotus, not very many people have Addison's and I want to let anyone who does know I am here. You are always so kind and I feel a kinship between us. That truly makes me happy.


Susie 6 years ago

Thank you for your familiar sounding story. I too have addison's disease and hypopituitarism. I have been on steroids for almost 20 years and don't even recognize myself in the mirror anymore. I am now 56 years old and most days think about the not going on. I want to cry sometimes but I physically can't because the anti depressants won't let me, so I cry in my head and my heart. It took years for me to be diagnosed and even now when I have an attack the triage nurse at the local hospital has no idea what level to triage me at. My endo doc wrote a letter if I should ever be in ER that stated what to give me immediately but the triage nurse said it was over 6 months old and I would have to wait to wait in line. I get so tired fighting all the time, that I just want to lie in bed and sleep. You know how it is don't you?


GracieLinda profile image

GracieLinda 6 years ago from Brandon, FL Author

Susie, I do know how it is. I have had it for about 10 years. I gained 70 pounds. Celexa, an antidepressant and it took the weight off. Talk to your MD and quick. I have also developed heart problems and had to have a stent. Next is bypass surgery and I just turned 50. Make sure you make them check.

Since no one knows what you have and you crash get your Dr. to give you a script for the injection for emergencies.

It is difficult to make others understand what it is really like to have this, even medical people don't know what to do and when you tell them they look at you like you are nuts. I have had to beg for steroids, really beg.

I fear being in an accident and being gone before they find my med alert bracelet.

Make them give you what you need and cause a stink if they don't. I know you feel beaten, me too, but we have to fight for ourselves.


KonaRose 6 years ago

I so know...I feel like I have been dying for the last 3 years. And I am an RN. They (medical system) try to blame me for being so sick. I found one doctor who won't give up on me, but each day, I swear, I will not live through. My friends and relatives think I am attention seeking or nuts. My morning cortisol is 2.5 and I did not feel any better when it was 75 or 99 (on Cortef) I still felt like I was dying. My hormones are all screwed up, I went into VTach and asystole, and almost died, the hospital has no idea what to do with me. My B/P drops into the toilet and I pass out. I have 'lived' like this in bed for 3 years now. I WANT to die, I think it is way past my time. I am suffering.


KonaRose 6 years ago

PS I am 51. Please don't ask me not to give up or to keep fighting. I don't have the strength to barely type this or to speak, my husband's heart is going, our kids don't care, and I need to go. I just can't keep doing this.


Gracie Linda 6 years ago

KonaRose: Take hydrocortisone or cortisol in double/triple doses. You are crashing and should really go to the hospital. Oh Lord, I wish I had seen this sooner.

You are not nuts, you are under stress and that will cause a crash. Do you have an emergency injection? Take it.

It isn't about your kids. It is about you and your husband right now. Drink coffee, any caffiene will help. Give him his nitro. Call the ambulance, anything.

I think the heart thing goes with this. I have had an ablation on mine. Do you have any other problems?


GracieLinda profile image

GracieLinda 6 years ago from Brandon, FL Author

KonaRose: You can contact me at roners@hotmail.com


Colin Attwood 6 years ago

Gracie, thanks so much for sharing your story. It's truly inspirational to me that you were able to self diagnose and fight for steroids. What a crazy tipsy turvy world we live in. I was lucky enough to have a wife that fought for me in the hospital, the endo in the hospital literally rolled his eyes when my wife shared the webmd diagnosis of Addisons. Took them about a week to and $53,000 in medical fees to figure it out what I had, I was lucky it was a training hospital (st Vincents in NYC - now closed) so I went through the liver, kidney, heart, brain students before I got to the endocrine team or the Endocrine 5 as I liked to call them, being a Brit it help to think of them as a British rock group from the 60's but wearing white coats, anyhow per your digress, progress comment. It's very comforting to know I'm not alone and that there are others out there who also do battle daily and nightly with this disease. Thanks


GracieLinda profile image

GracieLinda 6 years ago from Brandon, FL Author

I wrote this to help others and am glad it helps you. If you wind up in the hospital again, tell your wife to be prepared to fight for what you need. They look at me blankly when I tell them what I need and then go right back to talking to each other with no comment made.

I was recently in for a broken ankle, the steroids have caused severe osteoporosis. Get checked for that too, if you haven't already.


Mark Giuseffi 5 years ago

I read your medical histories with regret. I too had difficulty getting diagnosed with Addisons. I went to about five doctors who mis-diagnosed me. I was a very sick eleven year old. Finally, we went to an endocrinologist who did the proper blood work to correctly assess me. I am now 60 years old. In 2011, I will have been on hydrocortisone and florinef (steroids) for fifety years. I consider myself very lucky, in that my only adverse affect has been with osteoporosis. This happens to everyone who takes steroids over long periods.

If your health is not good, I would consider another endocrinologist. It's a complex illness. I thank you for sharing your stories, and I wish you all the best. Remember too that John Kennedy had this illness, and he became President.


GracieLinda profile image

GracieLinda 5 years ago from Brandon, FL Author

Yes, I do consider myself fortunate. I have switched dr.s and have finally been put on flourinef after 9 years. I needed it. I also have osteopenia. Doing well but CANNOT deal with stress at all, hence I am disabled. I feel like a weazle butt.


Nelly Landeros 5 years ago

I read your story & cried, i was diagnosed with addisons 2 years ago & many other medical issues. I am 37 years old, trying to qualify for social security benefits, i've been denied 2 times. Everything that you've been through & continue to go through happened to me. My STUPID dr. ignored every symptom. When i went to the hospital my blood pressure dropped, veins disappeared, & the doctors saying i was dying, was a scary situation. Since then i'm in & out of the hospital, & still they look up ADDISONS DISEASE on the internet because they have NO idea what it is!!! I am now on Prednisone (steroids), & my body still can not adjust.. Everyday i thank GOD for giving me 1 more day to live... I WISH I WAS HEALTHY AGAIN, DRUG FREE, & NO PAIN!!!!


Ted 4 years ago

I have addissons disease and bone disease, a problem with blood pressure, arthritis in all my joints, and other health problems, live with chronic pain and sick all the time. I just take one day at a time. But I do get tired of being sick all the time. Take all kinds of medicines. I do a lot of praying, And I think God for helping me get thru each day. wILL PRAY FOR ALL PO YOU !!


GracieLinda 4 years ago

If you are fighting for disability get an attorney and a Doctor who knows what it is. Most prognose this as a normal life with steroids. It isn't, as you know. Depression is a HUGE problem and stress has to be at a bare minimum or you will get sicker. It is a mental disability as well.

Everyone with this disease should be able to stop working immediately in order not to get any sicker.


Carrie 4 years ago

Nelly, I too cried when reading these stories. I'm am a 36 year old mommy of 4 children and i suffer with Addison's disease as well. It's about 4:00 am and I've yet to fall asleep, despite all the meds I've been given by my end and internist, psycholigist (sp?). I was just recently in the hospital with phosporous levels of .4, my blood pressure is thru the roof and my head and heart feel like their going to explode. I did just start blood pressure meds btw but its still running about 160/90. I don't know how to cope with this anymore, can't do my daily chores, I have to sit to shower and can't blowdry my own hair! I was told I almost died at my last ICU visit this week. It looks like I have black eyes and i could easily be mistaken as a "junkie", ugggg. My hydrocortisone is not helping at all, I'm out of breath, and just can't sleep. It may be due to my hyperthyroid (which I'm off of for 2 weeks for a "new test", oh yay more Dr. Visits and nothing to slow down my 100 mile an hour speed race in my chest! Just don't know what to do, I feel alone because nobody as far as family doesn't understand , nor do the doctors in the E.R! I am home and still feel like I'm having a major adrenal crisis STILL! Nice to find a place to hear similar stories even though they are very saddening. I wish u all the best and NEVER GIVE UP!


GracieLinda profile image

GracieLinda 4 years ago from Brandon, FL Author

Carrie, up your dose of Hydrocortisone by 20-40 mg. If this doesn't make you feel better, it may well be the hyperthyroid. It sounds like it is. The Addisons usually lowers blood pressure and it is the Potassium that can kill us because it gets too high. I take fludrocortisone 2 x a day for that. It works. I could feel my heart every skipping best. The steroids will interrupt your sleep. I take 20 mg in the am and the other 10 at lunch. It does help but I do get tired by 4-5. No one has really heard about this disease because it only affects about 1 in 100,000. Most Doctors look at you like you are nuts when you beg for the steroids. Don't stop begging and stand up for yourself. No one else will. You are weak and not getting the steroids you need. You may be crashing. Take those extra pills, you can't take too many. You are not alone, there are those of us here that understand. I sit to shower too and I MISS my baths. I miss my energy and strength. I miss my life. Get your hair done at a salon. Get a maid to help with the house and calm down. You need to spend time with your kids. See a cardiologist about the heart, they might need to do an ablation (or pacemaker). I had the ablation. Take your health over. If you feel really bad go back to the hospital and ask for IV'd steroids. Call you dr. and ask him to order it. I had to have 200 mg IV'd in when my brother died in November. I was almost on my knees. Anything stressful with eat up all the steroids and you will be left to weak to walk. The hyperthyroid deal isn't helping. Let me know what happens. You may have to get really firm about this with your doctors. Remember you are the most important person in your children's lives and demand what you need.


JasonSnyder 3 years ago

Sorry to bring this up again but just stumbled upon this during some research on Addison's. To make this short, I am now 16 and was diagnosed at age 11: just making it before death hit me. I have played sports all my life and continue to do so. I participate almost everyday and eat well everyday. However, I am unable to lose any weight whatsoever. Now due to a horrible knee injury, I am out for 2 years and have taking to the gym everyday with a majors step up in diet. But I am still unable to lose weight. I feel ok and receive A's in almost all my classes (advanced courses).

My question is that does anyone have the secret to losing weight while dealing with the steroids?

Thanks, Jason


JasonSnyder 3 years ago

I am 5'6 and weigh 140. I know it's not that bad, but the fact that I cannot lose the rest and get a flat stomach and some abs is starting to make me impatient.

Thanks everyone, and my heart truly goes out to all of you who must put up with this. Please, stay strong and find a way to remain happy as I do everyday.


GracieLinda profile image

GracieLinda 3 years ago from Brandon, FL Author

Here is the secret I found. Celexa. Some it adds weigh too, some you lose the weight. I lost it. Most of us are depressed and can get this med if we ask.


sue 3 years ago

hi i am 62 had cushing 12 years ago and now i have addisons. my joints hurt so bad mainly my legs and hips and so very tired. can you help sue


Heather 2 years ago

Oh holy wow. I think I finally found what ails me. Praise God for your post now maybe my doctor will do the right tests. I just hope I can get some relief.


Dawn 2 years ago

I'm in my 40's and have been diagnosed with addison's for 11 years, suffered with misdiagnoses much longer. I have had severe muscular and joint pain along with painful/sensitive skin in my legs and feet mainly. Recently I had shoulder surgery then hospitalized with the flu, thi all started the 1st of december. I have been on extra doses of steroids for all this and am having a long difficult recovery. My pain is so severe from the surgery I dont know what to do, I'm on pain meds but its not helping. I have been recently diagnosed with an enlarged heart and murmur since being hospitalized with the flu after surgery as well, also I'm still getting treatments for my lung problems due to the flu which are getting better at least. Does anyone have nay advice on th pain or experienced anything like this? Heproblems as well? PLEASE HELP


Dawn 2 years ago

I'm in my 40's and have been diagnosed with addison's for 11 years, suffered with misdiagnoses much longer. I have had severe muscular and joint pain along with painful/sensitive skin in my legs and feet mainly. Recently I had shoulder surgery then hospitalized with the flu, thi all started the 1st of december. I have been on extra doses of steroids for all this and am having a long difficult recovery. My pain is so severe from the surgery I dont know what to do, I'm on pain meds but its not helping. I have been recently diagnosed with an enlarged heart and murmur since being hospitalized with the flu after surgery as well, also I'm still getting treatments for my lung problems due to the flu which are getting better at least. Does anyone have nay advice on th pain or experienced anything like this? Heproblems as well? PLEASE HELP


GracieLinda profile image

GracieLinda 2 years ago from Brandon, FL Author

Yep, I had to have a stent and an ablation. I was in the hosp. for a week in Nov with sepsis and a stroke. I am on pain meds due to a fracture from bone depletion from the steroids. You can up the meds I think. It may be the only thing that helps,


GracieLinda profile image

GracieLinda 2 years ago from Brandon, FL Author

Sue, I hope you found what you need. There seem to be some really good drugs on the market for that. You may have arthritis all over your body. I do. The pain killers for a broken ankle have helped.


Emma 13 months ago

I just wanted to tell you that I appreciated reading your story. I could definitely relate to several things. It always makes me cringe when I hear of someone being put on thyroid medication because that accelerated Addison's disease in me. It makes me wonder why they don't test people's adrenal function first, but I guess it's just because it's so rare.

I consider myself lucky because I am able to live a pretty normal life with this disease (or should I say my kind of normal, because I have several other disabilities). It has affected my stamina, and I'm more sensitive to heat and sweating than I used to be (I have to take extra meds if I'm doing something active outside). I also gained weight when I first started hydrocortisone, and I was already overweight to begin with, but I have been very slowly losing it.

I also have two relatives with this disease to look up to--both have had it for over 40 years and have had absolutely no side effects from the meds. I hope I'll be as lucky as them as far as that goes. My endo is an adrenal specialist and he is very positive about this disease. He is big into finding each person's lowest effective dose, so that gives me hope. He is also more than happy to make sure I have all the steroids, injections, letters, etc. that I need--all I have to do is call or ask at an appointment. I would definitely recommend that anyone who is really struggling with this disease and suspect you are not getting the best care, try to find a doctor who will really work with you to get you feeling better. Best wishes to every Addisonian who reads this article!

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