It's been a month since I found out I have Fibromyalgia. There are only 3 drugs approved for Fibromyalgia. I tried 1 pill of Cymbalta and it put me in a tailspin! I lost 8 lbs. of fluid in one evening (not in a good way), and spend the rest of the weekend trying to get myself rebalanced. Diarrhea throws my electrolytes out of whack and puts me in a crisis. That was fun... NOT!
So, I called the doc on Monday and let them know. Next drug. I took 5 pills of Lyrica before I said enough is enough! My brain fog was even worse. I had a very hard time thinking at all! I felt like a drunk! I staggered around in the night when I had to go to the bathroom, etc. No fun! I called the doc again. I went in to see him. Well guess what people? I'm sensitive to drugs! ;) So the nice doctor said he'd be too afraid to try any other drugs on me, for fear I'd go into an adrenal crisis. Good enough for me. I didn't like those drugs anyway!
I would encourage anyone with Fibromyalgia, Chronic Fatigue, MS, or autoimmune diseases to look up Low Dose Naltrexone. It has helped me a lot, and I've only been on it a couple days. Is ALL of my pain gone? No... not yet, anyway. But, I'm not laying it bed 24 hrs. a day and feeling depressed and feeling like crying because I hurt so bad, either! I can still feel places that hurt at times. I don't notice my knees hurting until I try to go up or down the stairs. They are still tender, but nothing like they were. At my worst, I was laying in bed, feeling my whole body throb with pain. I couldn't do anything, and nothing was helping with the pain!
Naltrexone in it's full strength of 50 mg. is used to help drug addicts. In low doses, it works totally different in the body. It helps the body produce more endorphins, the body's natural pain killer. It can be taken in liquid form, or pill form. The normal dose is up to 4.5 mg. The beauty of the liquid is, you can start slow, and find out what dose works best for you. Since I'm so sensitive to medicine, I started at .5 mg. That seems about right for me, for now. Hopefully, in time I will be able to work up to about 3 mg. or so.
LDN is usually taken at bedtime. Some people take it in the daytime. About the only side effect is sleeping problems in the first week of taking it. Some people have trouble falling asleep. It makes me sleepy after I take it. It does that for some other people I have read about. Once you are asleep, you get into a good deep sleep. It can also cause vivid or bizare dreams. I have vivid dreams, but not bizare. As I increase dose, that may change. I don't know yet.
One other thing I've found to help with the brain fog is a product called "Thinkfast". I also put D-Ribose in my drinks when I can remember. I'm finding these things to help with the fibromyalgia as well.
Sunday, August 21, 2011
Thursday, July 28, 2011
Guess I should update
Nothing exciting here, really. It's been 3 months since I updated, so I guess I should update a bit.
I have a new diagnosis. Maybe some others to come, but waiting on labs. I have Fibromyalgia. I've not been formally diagnosed with Chronic Fatigue, but I can tell you I have that as well. I've had them all my life, but, I also had Cushing's, and I think the high steroids helped treat them. For me, everything has cycled, all my life.
When I was a child, I fought to get my naps. My dad told me I would not be able to sleep when I started school. I said, "Too bad! I'll deal with that then. Right now, I'm taking a nap!" The story of my life is that I've always been tired. At times, I had more energy than others, but overall, I've been tired. I'm 40 now, so it's really wearing on me. I feel like I sleep my life away, and life is passing me by. I've tried Provigil, at 200 mg., and still I was tired, and slept a lot. Maybe my new doc, a Rheumatologist, will help me.
He's a super nice guy. He listens! Wow! I've met docs who just want to talk, and that is so annoying! So this doc diagnosed me with Fibro, and is checking to see if there is something else underlying. My body is diseased, that's all there is to it!
I have to say, I am depressed! I thought Cushing's was my only problem, and getting rid of that, I would feel great again. I did feel really good for the first 7 months. Then it all went downhill. Slowly but surely. I've gained all but 10 lbs. back, of the 60 I lost. I have Cushing's symptoms again, and I'm suppose to be cured. I don't know where all of that stands right now.
Now add in a new problem, the Fibro. Not new really, but I think it was in remission for a while, and is back, so now I'm dealnig with that. It hit bad in June. I felt like I had arthritis attack my whole body! My muscles hurt as well. I have a lot of muscle tension, and pains in my muscles. I was bedridden with it for 2 or 3 weeks through the worst of it. I decided this is for the birds! I'm so sick of being sick! So, I made the appt. with the Rheumy. I'd never been to one before.
He gave me Cymbalta to try first. Some say it's like a miracle drug. Not for me! One pill threw me into crisis mode. I was able to pull myself out of it after a few days, without going to the hospital. I don't know if I just reacted bad or if it lowers cortisol. I can't find much information regarding that. One body building site says it lowers cortisol by up to 40%! If that's true, that was my problem. Next drug please!
Lyrica is next on the list. I was scared to take it, because I didn't know how I would react. I didn't feel good yesterday, in general. My stomach was upset for most of the day. I took extra hydro before bed because I was nervous that the Lyrica might throw me into a low while sleeping. Wrong! I was wired until about 2:30 or 3 am. Finally the Lyrica kicked in! Wow! I slept really good. I woke up with very little pain. I'm suppose to take this 75 mg. for a week, then take it twice a day. I hope it controls the pain altogether. It would be nice to be pain free! I worry about it making me so tired though. I'm already tired. I don't need to be extra tired! We shall see how this works out!
I have a new diagnosis. Maybe some others to come, but waiting on labs. I have Fibromyalgia. I've not been formally diagnosed with Chronic Fatigue, but I can tell you I have that as well. I've had them all my life, but, I also had Cushing's, and I think the high steroids helped treat them. For me, everything has cycled, all my life.
When I was a child, I fought to get my naps. My dad told me I would not be able to sleep when I started school. I said, "Too bad! I'll deal with that then. Right now, I'm taking a nap!" The story of my life is that I've always been tired. At times, I had more energy than others, but overall, I've been tired. I'm 40 now, so it's really wearing on me. I feel like I sleep my life away, and life is passing me by. I've tried Provigil, at 200 mg., and still I was tired, and slept a lot. Maybe my new doc, a Rheumatologist, will help me.
He's a super nice guy. He listens! Wow! I've met docs who just want to talk, and that is so annoying! So this doc diagnosed me with Fibro, and is checking to see if there is something else underlying. My body is diseased, that's all there is to it!
I have to say, I am depressed! I thought Cushing's was my only problem, and getting rid of that, I would feel great again. I did feel really good for the first 7 months. Then it all went downhill. Slowly but surely. I've gained all but 10 lbs. back, of the 60 I lost. I have Cushing's symptoms again, and I'm suppose to be cured. I don't know where all of that stands right now.
Now add in a new problem, the Fibro. Not new really, but I think it was in remission for a while, and is back, so now I'm dealnig with that. It hit bad in June. I felt like I had arthritis attack my whole body! My muscles hurt as well. I have a lot of muscle tension, and pains in my muscles. I was bedridden with it for 2 or 3 weeks through the worst of it. I decided this is for the birds! I'm so sick of being sick! So, I made the appt. with the Rheumy. I'd never been to one before.
He gave me Cymbalta to try first. Some say it's like a miracle drug. Not for me! One pill threw me into crisis mode. I was able to pull myself out of it after a few days, without going to the hospital. I don't know if I just reacted bad or if it lowers cortisol. I can't find much information regarding that. One body building site says it lowers cortisol by up to 40%! If that's true, that was my problem. Next drug please!
Lyrica is next on the list. I was scared to take it, because I didn't know how I would react. I didn't feel good yesterday, in general. My stomach was upset for most of the day. I took extra hydro before bed because I was nervous that the Lyrica might throw me into a low while sleeping. Wrong! I was wired until about 2:30 or 3 am. Finally the Lyrica kicked in! Wow! I slept really good. I woke up with very little pain. I'm suppose to take this 75 mg. for a week, then take it twice a day. I hope it controls the pain altogether. It would be nice to be pain free! I worry about it making me so tired though. I'm already tired. I don't need to be extra tired! We shall see how this works out!
Wednesday, April 6, 2011
Qualitest is not my friend!
It's been a while since I last posted. I've been trying to figure out what in the world is going on with my health!
In May, I will be 2 yrs. post BLA. I'm back at square one! I've gained back all of the weight I had lost. I was feeling like I was cycling like I did with Cushing's. Even my specialist could see my red round face and neck. When I saw the specialist, he didn't think I had regrowth where my adrenals were, but had no other ideas of what was going on. He said I should test. To do that, you have to switch steroids to dexamethasone. Hydrocortisone shows up in your testing, so you can't tell whether the results are from the pills you are taking, or if your body is producing cortisol. When I would switch to the dex, I would feel so much better, and my symptoms would go away. I'd quit cycling. I couldn't figure out why that was. Dex is a much stronger steroid, yet it wasn't giving me the high symptoms the hydro was.
A lot of doctors hate our medical support groups. They think they make us sick! (Weirdos!) Our support groups are our life line! It's through our support groups that we find the help we need. Doctors don't want to go the extra mile. By putting our experiences together, we can figure out problems that are stumping even our docs. One of the gals in my support group posted about problems she was having with the Qualitest hydrocortisone. It still didn't dawn on me for a little bit. Then I started thinking about how my symptoms would go away when I went off of it, and onto the dex. I contacted her and asked if she was having XXX symptoms. She said yes! Ding, ding, ding! The lightbulb went off in my head. I had not considered that the hydrocortisone was the problem.
I was only on 10 mg. of hydro, which is not much at all when you have no adrenals. When I first had surgery in May of 2009, I was on Glades hydrocoritsone. I did great on that. It was my favorite. The problem is, Glades went out of business. They quit making all drugs. I don't remember exactly when the pharmacy switched me, but I think it was Nov./Dec. of 2009. I knew I didn't feel as good on Qualitest, but figured this was my lot in life now, since Glades quit making theirs. The pharmacy had run out of their stock of Glades, and now Qualitest was their choice.
At first, I was able to maintain my weight, but the other Cushing's symptoms started creeping back in, one by one. That's when I went to see my specialist last Sept. to see what he thought was going on. Then I had a crisis at the end of Oct. I still wonder if that didn't have something to do with this drug as well. I'll never be able to prove it, but it's a theory. After my crisis, I started gaining a lot of weight while on this Qualitest hydro. I seemed to be cycling harder and faster. I don't know if it was the accumulation of drugs in my body at that point or what. Then when I would go on the dex, the symptoms would subside.
So, I got the bright idea to call Glades and see if I could get ahold of anyone at their old number. I did, and they told me who they had sold off to. I called that number and they had sold the hydrocortisone portion off to Core Pharma. The formulation is the same! Same inactive ingredients! I even got the NDC# to order the hydro, but Core Pharma is not making it just yet. They said not until this summer. I wish they would have told me that the first time I called! In the meantime, a good friend of mine told me that she orders hers from New Zealand, OTC. The pills are small like Glades was, and she does good on them. Another friend reported the same. So, I ordered them from there, for the time being. I'm on day 3 with the new pills. I'm doing good so far. It will be interesting to see if I start dropping weight again, and doing really well. I think I will.
I started looking at all of the inactive ingredients between different manufacturers of hydrocortisone. There is a big difference. While all of them might work fine for one person, the next person could have trouble with all of them! One of the inactive ingredients in the Qualitest is known to attack hair follicles and make the hair fall out! I was losing huge wads of hair, and couldn't figure out why! I showed a pic to my doc. He said, "What's that?" I said, "My hair!" Even he agreed it was a lot to lose from one washing!
So, here are the symptoms I had on Qualitest hydro. I called and reported it today.
massive hair loss
red facial and neck flushing
weight gain
itching in general
hive like rash
spiking blood pressure/low blood pressure
indigestion
shaking internally
acne
red stretch marks
insomnia
brain fog
and probably others I'm forgetting.
When I say weight gain, I'm meaning 45 lbs. in 5 months. I did gain some of that while on dex, but it slowed way down while on dex. The real rapid gain was while on the Qualitest.
In May, I will be 2 yrs. post BLA. I'm back at square one! I've gained back all of the weight I had lost. I was feeling like I was cycling like I did with Cushing's. Even my specialist could see my red round face and neck. When I saw the specialist, he didn't think I had regrowth where my adrenals were, but had no other ideas of what was going on. He said I should test. To do that, you have to switch steroids to dexamethasone. Hydrocortisone shows up in your testing, so you can't tell whether the results are from the pills you are taking, or if your body is producing cortisol. When I would switch to the dex, I would feel so much better, and my symptoms would go away. I'd quit cycling. I couldn't figure out why that was. Dex is a much stronger steroid, yet it wasn't giving me the high symptoms the hydro was.
A lot of doctors hate our medical support groups. They think they make us sick! (Weirdos!) Our support groups are our life line! It's through our support groups that we find the help we need. Doctors don't want to go the extra mile. By putting our experiences together, we can figure out problems that are stumping even our docs. One of the gals in my support group posted about problems she was having with the Qualitest hydrocortisone. It still didn't dawn on me for a little bit. Then I started thinking about how my symptoms would go away when I went off of it, and onto the dex. I contacted her and asked if she was having XXX symptoms. She said yes! Ding, ding, ding! The lightbulb went off in my head. I had not considered that the hydrocortisone was the problem.
I was only on 10 mg. of hydro, which is not much at all when you have no adrenals. When I first had surgery in May of 2009, I was on Glades hydrocoritsone. I did great on that. It was my favorite. The problem is, Glades went out of business. They quit making all drugs. I don't remember exactly when the pharmacy switched me, but I think it was Nov./Dec. of 2009. I knew I didn't feel as good on Qualitest, but figured this was my lot in life now, since Glades quit making theirs. The pharmacy had run out of their stock of Glades, and now Qualitest was their choice.
At first, I was able to maintain my weight, but the other Cushing's symptoms started creeping back in, one by one. That's when I went to see my specialist last Sept. to see what he thought was going on. Then I had a crisis at the end of Oct. I still wonder if that didn't have something to do with this drug as well. I'll never be able to prove it, but it's a theory. After my crisis, I started gaining a lot of weight while on this Qualitest hydro. I seemed to be cycling harder and faster. I don't know if it was the accumulation of drugs in my body at that point or what. Then when I would go on the dex, the symptoms would subside.
So, I got the bright idea to call Glades and see if I could get ahold of anyone at their old number. I did, and they told me who they had sold off to. I called that number and they had sold the hydrocortisone portion off to Core Pharma. The formulation is the same! Same inactive ingredients! I even got the NDC# to order the hydro, but Core Pharma is not making it just yet. They said not until this summer. I wish they would have told me that the first time I called! In the meantime, a good friend of mine told me that she orders hers from New Zealand, OTC. The pills are small like Glades was, and she does good on them. Another friend reported the same. So, I ordered them from there, for the time being. I'm on day 3 with the new pills. I'm doing good so far. It will be interesting to see if I start dropping weight again, and doing really well. I think I will.
I started looking at all of the inactive ingredients between different manufacturers of hydrocortisone. There is a big difference. While all of them might work fine for one person, the next person could have trouble with all of them! One of the inactive ingredients in the Qualitest is known to attack hair follicles and make the hair fall out! I was losing huge wads of hair, and couldn't figure out why! I showed a pic to my doc. He said, "What's that?" I said, "My hair!" Even he agreed it was a lot to lose from one washing!
So, here are the symptoms I had on Qualitest hydro. I called and reported it today.
massive hair loss
red facial and neck flushing
weight gain
itching in general
hive like rash
spiking blood pressure/low blood pressure
indigestion
shaking internally
acne
red stretch marks
insomnia
brain fog
and probably others I'm forgetting.
When I say weight gain, I'm meaning 45 lbs. in 5 months. I did gain some of that while on dex, but it slowed way down while on dex. The real rapid gain was while on the Qualitest.
Sunday, February 27, 2011
~Blah~
I haven't updated my blog since right after my crisis, so that would have been in Nov. There is not a lot to report. Not good stuff anyway. All of my Cushing's symptoms have returned! I can't think of one that I have not had come back.
I've gained about 35 lbs. since Nov.! Talk about frustrating! With 10 more lbs., I'll be where I was when I went in to have my adrenals removed! Every bit of progress I made has quickly faded away. I'm back at square one, only it's a bit different. This time, I have no adrenals, with all of the same symptoms. All of these symptoms went away for about a year. The weight loss took a while to kick in (I think 3 or 4 months). Once I started losing, I lost pretty quickly, but the weight loss stopped at 7 months. I was able to maintain my weight for close to a year, as the symptoms slowly began creeping back in.
With my weight holding steady, I could blame the symptoms on something else. I really didn't think I could have rest tissue (regrowth of tissue where the adrenals were removed). As time went on, more and more symptoms came back. Hormone labs looked good, so we couldn't blame any symptoms on any of that! My good doctor in California said I needed to test, because he had no idea what else would make these symptoms come back. The good part is, he got to see it first hand in his office. My face was swollen that night, and flashed red, while I was sitting there talking to him. It randomly does this, and I don't know why. It did it all the time when I had Cushing's. It went away when it appeared I was cured. It came back with the other symptoms.
I have done some testing. Most of it, I send to California. I forgot to add my fax number, so the lab is holding my reports hostage! There are a few local ones that I need to pick up. The only result that I did pick up local that showed something was a 17-Hydroxycorticosteroid reading while on Dexamethasone. Dex is not suppose to show up in our testing. A friend of mine has rest tissue and she doesn't get anything to show on this particular test. I usually had good results with that test in my previous testing. The thing now is, I have no adrenals, so I shouldn't be producing cortisol at all! Nothing detectable.
I know that I am still cycling. I've been on 10 mg. of hydrocortisone for over a year. That's not much for someone with no adrenals. I've been lower too, and did good. I went back up to 10 though because I was working so much, I was afraid of having a crisis. That's another tell tale symptom.... working like crazy, but gaining weight. Anyway, when I'm on the hydrocortisone, I can tell the cycles more than when I'm on the dexamethasone. For some reason, dex seems to even me out more. I still cycle on it though. I have periods where I am all energy, working like crazy, breaking out in zits, and others where I hurt all over, and can hardly move! I have times I can't seem to get enough sleep, and other times I don't sleep but a few hours a day. My sleep cycle is a mess again. I didn't have to deal with this during my "cured" period after surgery.
The brain fog is really bad again. The emotional aspect of this disease is bad! Some days, I feel chipper. Other days I feel blah. Still others, I feel downright depressed and end up crying. I'm so very tired of this disease. I wish it would leave and never come back. It was bad enough to face my kids having the same disease, but even worse now that I'm going through all of this again!
My mind goes in so many directions. If my kids are left to progress through this disease, they will be as bad as me, for sure. They are worse than I was at their ages. The part I struggle with is this. They aren't "THAT" bad yet, and I worry that they will face recurrence after recurrence like me. I worry what this will do to them in the long run. How will they be able to function as adults. I don't function very well, and even at my best, in the "cured" state, it still had limitations. I don't think you ever fully recover from this disease. You can feel 100% better than you do with the disease (I've been there), but not feel 100% like you never had a disease. The damage it does is often permenant. You have to live the rest of your life with those problems. I'm really scared of sending the kids through surgery, and have them come out on the other end of it feeling worse than they did going in. There are people who feel like that. It's great when you get cured. When you don't, not so much. It's something we have to do. We have to take the chance at getting cured. I know that. It's a much easier decision for my own body, than for my kids'. It's a decision I don't want to have to make. I really don't want to wear big girl panties any more!
If you think of us, say a prayer for our family. We surely need it.
I've gained about 35 lbs. since Nov.! Talk about frustrating! With 10 more lbs., I'll be where I was when I went in to have my adrenals removed! Every bit of progress I made has quickly faded away. I'm back at square one, only it's a bit different. This time, I have no adrenals, with all of the same symptoms. All of these symptoms went away for about a year. The weight loss took a while to kick in (I think 3 or 4 months). Once I started losing, I lost pretty quickly, but the weight loss stopped at 7 months. I was able to maintain my weight for close to a year, as the symptoms slowly began creeping back in.
With my weight holding steady, I could blame the symptoms on something else. I really didn't think I could have rest tissue (regrowth of tissue where the adrenals were removed). As time went on, more and more symptoms came back. Hormone labs looked good, so we couldn't blame any symptoms on any of that! My good doctor in California said I needed to test, because he had no idea what else would make these symptoms come back. The good part is, he got to see it first hand in his office. My face was swollen that night, and flashed red, while I was sitting there talking to him. It randomly does this, and I don't know why. It did it all the time when I had Cushing's. It went away when it appeared I was cured. It came back with the other symptoms.
I have done some testing. Most of it, I send to California. I forgot to add my fax number, so the lab is holding my reports hostage! There are a few local ones that I need to pick up. The only result that I did pick up local that showed something was a 17-Hydroxycorticosteroid reading while on Dexamethasone. Dex is not suppose to show up in our testing. A friend of mine has rest tissue and she doesn't get anything to show on this particular test. I usually had good results with that test in my previous testing. The thing now is, I have no adrenals, so I shouldn't be producing cortisol at all! Nothing detectable.
I know that I am still cycling. I've been on 10 mg. of hydrocortisone for over a year. That's not much for someone with no adrenals. I've been lower too, and did good. I went back up to 10 though because I was working so much, I was afraid of having a crisis. That's another tell tale symptom.... working like crazy, but gaining weight. Anyway, when I'm on the hydrocortisone, I can tell the cycles more than when I'm on the dexamethasone. For some reason, dex seems to even me out more. I still cycle on it though. I have periods where I am all energy, working like crazy, breaking out in zits, and others where I hurt all over, and can hardly move! I have times I can't seem to get enough sleep, and other times I don't sleep but a few hours a day. My sleep cycle is a mess again. I didn't have to deal with this during my "cured" period after surgery.
The brain fog is really bad again. The emotional aspect of this disease is bad! Some days, I feel chipper. Other days I feel blah. Still others, I feel downright depressed and end up crying. I'm so very tired of this disease. I wish it would leave and never come back. It was bad enough to face my kids having the same disease, but even worse now that I'm going through all of this again!
My mind goes in so many directions. If my kids are left to progress through this disease, they will be as bad as me, for sure. They are worse than I was at their ages. The part I struggle with is this. They aren't "THAT" bad yet, and I worry that they will face recurrence after recurrence like me. I worry what this will do to them in the long run. How will they be able to function as adults. I don't function very well, and even at my best, in the "cured" state, it still had limitations. I don't think you ever fully recover from this disease. You can feel 100% better than you do with the disease (I've been there), but not feel 100% like you never had a disease. The damage it does is often permenant. You have to live the rest of your life with those problems. I'm really scared of sending the kids through surgery, and have them come out on the other end of it feeling worse than they did going in. There are people who feel like that. It's great when you get cured. When you don't, not so much. It's something we have to do. We have to take the chance at getting cured. I know that. It's a much easier decision for my own body, than for my kids'. It's a decision I don't want to have to make. I really don't want to wear big girl panties any more!
If you think of us, say a prayer for our family. We surely need it.
Sunday, November 21, 2010
My First Adrenal Crisis
If this is the first time you've read my blog, I'll give you a briefer, to bring you up to speed. If you already know my history, skip to the next paragraph. I had Cushing's disease, probably all my life, but the symptoms kicked into a higher gear when I was around 23, which was 17 years ago. In 2007, they really kicked into high gear. I went to CA to see a Cushing's specialist and 9 months later, was diagnosed with Cushing's disease. I had pituitary surgery to remove my 1/2 mm. tumor. I had a brief remission (about 3 months) and started testing again. I had my adrenals removed, which is a bilateral adrenalectomy, or BLA for short. That surgery was in May of 2009. This means I am forever prone to having an adrenal crisis.
I've been crusing along really well since my BLA, until Oct. 27, 2010. First, lets back up a bit. I had my gallbladder removed on Tues., Oct. 12, 2010. They found an umbilical hernia and repaired that at the same time. It was incarcerated, which means "something" was going through the hernia. In my case, it was fat growing through. The fat was removed and the hernia repaird. I had noticed after this surgery that I had some urinary urgency. I would not feel like I needed to "go", and then all of a sudden, I would need to go, and it was "right now"! I figured with all they had done, and filling my abdomen with air, my bladder may have shifted or something. This was the ONLY symptom I had. No burning, no dark urine, no foul odor.
Fast forward to Tues., Oct. 19th. My husband left for Belgium on a business trip. No biggie. He's been on trips before and I've been fine. I'm never totally by myself. I have my kids here, and my cousin close by. I got my flu vaccine on Friday, the 22nd. I think it was the next night, one of my kids had the flu! Go figure! Since my hubby was gone, I had the honors of cleaning up the mess! I washed my hands a lot and used hand sanitizer and Lysol. I even had my son drive me to Wal-Mart to get a spot bot to shampoo the carpet, and minimize my contact. It didn't stop me from getting the flu, and my shot had not really had time to work (if it even covered this particular strain).
Now, we will fast forward a few days to the morning of Oct. 26th, which was a Tues. morning. It's now 2 weeks after my gallbladder/hernia surgery, and one week after my husband left. I was going to have an open house for a new business on Tues. night (this night) and Thurs. night. I woke up Tuesday morning feeling sick to my stomach. I thought to myself, "Oh great! I'm getting the flu!" I took extra hydrocortisone, like I do when I'm sick, and I felt better, and actually felt fine until about 3 PM. I had run out to a store to get a few things. While I was there, I noticed my heart felt like it would speed up and slow down. I tried to smile at a child who passed me, and my smile felt crooked and weird. I knew something was wrong, so I got checked out of the store and hurried home. I only live about 2 miles from anything in our town, so it's not a long trip. About 5 min. and I'm home. I took more hydro. I have no recollection of how much over the course of this day. I just know I took more. My normal dose is 10 mg., and I'd take 5 mg. more, or 10 mg. It helped for a while, but then I'd feel my heart start speeding up and slowing down again, and I knew I needed more hydro. That was my only symptom that something was wrong. It ended up that nobody showed up for the open house this night, so my cousin, who was with me, and I, closed up the open house and we drove to her house, which is about 5 or 6 houses away. We ordered some supper. I noticed I was speed talking, but didn't think a lot about it. I was excited about my new business. Right before we left my house, I had the urinary urgency again. I told my cousin I'd been having that since surgery. When I was sitting at her house, I started not feeling good again. I started putting pieces of the puzzle together. I'd been taking more hydro than normal through the day, even more than when I would normally get the flu. It would help for a while, then I needed more. I had the urinary urgency, and had just had gallbladder surgery 2 weeks before. It dawned on me that I probably had a UTI along with the flu! So, we left her house, and went back to mine. I decided I'd just use my shot and stress dose instead of taking the med orally. I felt so much better, so I sat and talked to my kids for a while, to see how it would go. My oldest son, Caleb is 18, and my kids are fully aware of what a crisis is. I felt great, for about an hour, and then I had that sinking feeling again, and my heart was speeding up/slowing down. I told him we better head to the ER so I could get some IV steroids and fluids. I was obviously headed for a crisis. I didn't think it would be a big deal. It wouldn't have, if they would have treated me properly when I told them to!
We got to the ER around 1:30 AM. I gave them my crisis letter. I couldn't find the one from Dr. Friedman, so I took Dr. Holmes that I still had. Even though he is not technically still my doctor, the rules are still the same! I also wear my medic alert bracelet and it has it spelled out on the back, what they are suppose to do! It says on the front:
Grace XXXXXX
NO ADRENALS
ADRENAL CRISIS
My endo's name
My endo's phone number
On the back it says:
100 mg. solu-cortef
in 50 cc of NS in IV
over 15-30 min.
PCP's name
PCP's number
I checked in, and they told me to have a seat. They called me back to triage after 10-15 min. I went back to the waiting room, to wait for registration. I exchanged all of the ins. info. I waited again. I don't know how long between all of this. I finally got back to see the doctor. He was nice, but not very knowledeable about adrenal crisis. He said I probably had a UTI brewing from the gallbladder surgery, and was going to send me home with an antibiotic and an antibiotic prescription. I asked if he was going to check my electrolytes. He didn't see the need. I told him I didn't feel good, and didn't feel comfortable going home without knowing my electrolytes were in the right ranges. All this time, my body was using up the stress dose shot I had taken. He asked me which electrolytes should be checked (DUH!)! I told him mainly sodium, potassium, and magnesium. He said ok and ordered those. I had given them a urine sample that was sent to the lab. They came in and drew my blood and sent it off to the lab. He came back and told me my urine looked fine, but they were going to treat me for a UTI anyway, as that was the most likely culprit. He decided he would go ahead and treat me as if I were in a crisis. He said something about giving me steroids. They started an IV, then we waited. We were waiting on the steroids and I was getting loopy. I was talking to my son. I knew I sounded loopy. I felt loopy. At one point, I felt like sitting up on the bed and yelling "Whoo". I told my son this, and told him I was getting loopy. I asked him if he notice. He said, "Mom, you've been getting loopy for a while." I started telling him I loved him and I was sorry he had to go through this with me, then I was crying, then I was laughing because I was crying. Caleb said, "I'm going to go see where those steroids are!"
Right here, it gets really confusing because a lot of things happened at once. Caleb left the room to get the doc and find out where my steroids were. He told the doctor, "I know my mom, and she's not acting right. She's getting really loopy". The doc said he didn't want to give me my steroids until the results of my blood work came back from the lab. There was a nurse standing there who looked through a pile of lab papers. She asked my name, and found my labs in the stack. The doctor looked at them, and said they were fine, I didn't need my steroids. Now, mind you, these were drawn not too long after getting into the hospital and reflecting my stress dose shot of 100 mg. The doctor told my son I'd get better since my labs were ok, and he didn't want to give me the streoids because in his words, "She doesn't need them". After the doctor told Caleb my labs were "Fine". Caleb said, "Well, she's not fine." The doc threw the labs up in his face and said I was fine (again). Caleb told him if I was not acting better in 5 to 10 min. he wanted the doctor to go ahead and give me the steroids. He was trying to work with the doctor, but he knew what I needed!
In the mean time... I was in the room alone, and I started sinking quickly! I yelled out for Caleb to come quickly and bring my shot! I didn't know what all had been happening out at the desk. I lost control of my bladder and peed all over the bed. Caleb tried to hand my emergency kit to the doc and he told the doctor to give me my shot. The doctor said, "I'm not giving her that shot! She doesn't need it!" He was telling me that there was nothing wrong with me. He said I was healthy and that I was just having a panic attack! I told him I DID need my shot, and to please give it to me. He refused. He said again, that I didn't need it, and I was "Just having a panic attack". I told the doctor that he must want me to die, and that he was killing me! He said I wasn't going to die.. etc. Caleb was trying to ask the doctor if it would hurt me if I had my steroids. The doc wouldn't answer him. He just kept saying I didn't need it. Caleb said, "Oh, forget this!" He whipped out his cell phone and called my mother-in-law to ask her what to do. She must have said that same thing as Caleb, to find out if it would hurt me to give it to me and let me do it myself. Caleb could not get an answer from to doc, so he stepped close to make eye contact with the doc and ask him again. The doctor went off, and jumped back and yelled, "Call the cops! Call security! This kid tried to come at me!"
At this point, the whole event was extreme stress on me, and sent me into a seizure. I peed myself again. My head slammed back into the bed and my back arched off of the bed. The doctor didn't even pay attention to me at all. Once the cops took Caleb out, the doc walked out of the room and left me. (Thank God for my nurse! She was my angel! She stayed with me. She told me the docs were overboard and she knew I needed my shot!) As my body arched, I felt my body pulling to the right. I knew I was about to die. I could feel the tug of my spirit trying to leave my body. The Lord and I had a quick talk! I told him not now, not like this! Not with my husband in Belgium, my kid in jail (he didn't go to jail, but I didn't know that at the time. I just knew they took him away.) and not with my other kids at home! They need me! I asked God to give me clarity of mind and not be loopy and let me reason with this doc who was being unreasonable!
I snapped out of that seizure and back to the room. I could talk again. The doctor came back to the room and I told him I was asking him one last time, if he would help me. I said, "Sir, do you not agree there is something wrong with me? I was not like this when I came in. Something has changed. I am loopy and I have no control over it! I have peed myself!" He said yes, I was different, but it was because I was having a panic attack. I said, "Ok, fine. If this is just a panic attack, then give me something for the panic attack. I've never had a panic attack before, but I'm telling you, I NEED my steroids!" He wouldn't give me anything! Nothing for a painc attack, no steroids, and he didn't even want to give me the antibiotic he was going to send me home with. I had to beg for them to give me that pill, since he wouldn't give it to me in my IV! He said, "It's not going to work that fast". I said, "I know, but it can at least START working while I lay here and rot! You must want me to die!" He said he didn't want me to die. I said, "Yes you do, because you are killing me! I need my steroids! I have asked for help and you are not helping me." I asked him one last time if he was going to help me. He said no, I didn't need anything. I said, "OK, fine! You get out of my face! You get me dismissed from this hell hole! Don't you come back in this room! You send someone else to do it!" My nurse heard everything! So did the security guard who was standing outside my room! He did let me swollow that one antibiotic pill before I left, and he sent me home with a prescription for antibiotics.
They dismissed me and my nurse walked me out toward the lobby. She had to hold on to me to steady me as I walked. I got to the lobby and was so out of it, I started to walk out of the hospital, and realized I didn't have a ride. The nurse had told me I could call family from a phone. I turned around and saw people at the desk. I walked over and told them I needed a phone. The lady pointed toward the area where the phone is. She said it was down by the vending machines. I started walking in that direction and went past the phone and vending machines. I started back through the ER doors, and thought, "No, I don't want to go there! They tried to kill me! I don't want to see them again!" I turned around and saw the phone on the wall. My hands were shaking as I lifted the phone. My eyes were blurry. I couldn't remember phone numbers. I started rattling off numbers in my head and came up with my cousin's number. I walked outside and sat on a bench, waiting for her to come get me. My nurse had given me back the emergency papers I took in. She put a sticker on them that had the doctor's name, and the date I went in. I didn't remember this. I saw the papers on my fridge a week later, and wondered where they came from. My cousin told me I brought them home from the hospital that night.
I'll interject one point here. I had a friend in CA that Caleb found online when he got home. The cop was really nice and didn't take him to jail. He told him to go home and get help for me. Caleb found a friend of mine online. She helped him try to page my doctor in CA, and then she called the hospital herself. She spoke with the head nurse. She told them she was a patient advocate for me. She told them I have no adrenals, and I had a medic alert and a crisis letter, and that they needed to give me my steroids and an antibiotic. The nurse told her that is not "their" protocol! She said the doc would decide what I needed and that I didn't need my steroids. I was "just having a panic attack"! Again, they refused to listen to anyone! The doc told me that night, that there were 4 medical personel on staff, and they all decided that a panic attack was my best diagnosis!! UNBELIEVEABLE! I was in that ER from around 1:30 am to 6:00 AM, with no help whatsoever!
So, I got home, and gave myself another shot, and went to bed. I slept 6 hrs. and then got up and called my PCP. They got me in at 3:45 PM. While I was there, and told him what had happened, I had to stress dose with 200 mg. The 100 mg. was not enough, and not lasting! I did 200 mg. in about a 15 min. time span. When my doctor walked out to call in a direct admit for me to St. Ann's hospital in Westerville, OH, I had to use my second shot. I sent my son after the doctor and I laid down on the table. Everyone in that office came in to help me! They started oxygen, took my blood pressure, etc. My nurse practitioner told me later, that I was struggling to get my thoughts together to talk to them that day. They called the squad to get me to the local hospital that tried to kill me less than 12 hrs. before. I needed immediate help, and that was the closest hospital. I was to go in and get my IV, steroids, and antibiotic started, then go to St. Ann's once I was stable. My PCP made copies of my mediciation list, 2 emergency letters (one from Dr. Friedman, and one from Dr. Holmes), he made a copy of my surgical report from Dr. Chiang, stating that my adrenals had been removed. He sent all of this to the hospital with me, gave my son a copy, and he took a copy himself! When the squad arrived, he told the EMT'S that I was his patient, and I had no adrenals. He told them this was not adrenal insufficiency, this was an ADRENAL CRISIS! He told them I was to get my fluids, steroid, and antibiotic STAT when I got over to the hospital. He is just a few businesses down from the hospital. He followed the squad to the hospital from his office! He walked in behind us and gave the ER staff my orders, told them what to do, and left. I don't know exactly what he said to them, but I know he told them to get this stuff started and take care of me. At the same time, the EMT's were handing me off to the next ER doctor.
This guy says to me, "Now honey, it's gonna be about 30-45 min. before we can get to you. We had a bad wreck and some head trauma's and some cardiac patients come in". I sat up on my gurney and said, "SIR! Do you not understand what STAT means?!!? You are a doctor and you are suppose to know this stuff! STAT means do it RIGHT NOW, not in 30 - 45 min.! I don't have that long to wait!!" I told them the ER had tried to kill me when I was in there earlier and I'd been in a crisis mode all day. He said, "Just calm down. We will get to you as soon as we can." They stuck me in a room and left. A lab tech came in and started asking me what kinds of medicine I take. I said, "I don't have time for this! My doc sent that! Find it!" He said, "I don't see it anywhere. Can you just tell me what all you take?" I said, "FIND IT!" I think I passed out after that. The next thing I know, the doctor shows up. He said, "Now honey, tell me what happened over the last 12 hrs. or so." I touched his hand and said, "Sir, please know I'm not trying to be obstinate. Once I get my meds, I'll tell you anything you want to know." He tried to talk to me some more, but I shut down. I chanted, "IV, steroids, IV, steroids..." I don't know how many times I got it out before passing out again.
The lab guy came back in at some point and wanted to draw blood. He said, "Bad news! Your veins have collapsed!" I thought, "Gee, ya think I'm telling the truth now?" I couldn't talk. He poked and got "some" blood. He said he hoped it was enough, and ran off to the lab with it. He came running back and said, "Bad news! Your blood is a mess! You are septic! We need to get atrial gasses!" I thought to myself, "Oh no! This is going to hurt!" I've heard that is a painful procedure. I remember a nurse coming in to help the lab tech, since my veins were collapsed. She picked up my arm and it was limp and flopping everywhere. I had no control over it. I never felt the first poke from the atrial gas draw. I don't even remember them doing it. I think I passed out again! The doctor came back in at some point and asked ME how much steroids I WANTED! I was loopy and got so excited when he said "steroids". I said, "OH... let's see... 100 mg. is the normal stress dose, but I had 200 mg. at my doctor's and that wasn't enough because I'm really sick. Maybe we should start with 300... no, I'm already behind, maybe 400... maybe 500... Oh, I don't know. You just pick something. Anything is better than nothing." He ran to the door and whispered something to the lab tech. The rest of the night is pretty much a blur. I remember that they FINALLY let my family come back with me. At this point, I couldn't really see them. I could make out the shape of their body and color of their clothes, so I knew it was them. My cousin thought I was sleeping a lot. I was in and out of consiousness! She said I would talk to them and I made sense, so they thought I was ok. I gave my son detailed instructions on what to do with the other kids, but I didn't remember it! The nurse came back to my room around 10 PM or so, and told me I was stable and they were going to dismiss me! I had enough sense to know I was not stable. I told them they were not sending me anywhere until I had my "escort" (meaning squad) to St. Ann's!" He said, "Who arranged this? When did this happen?" I said, "What is your people's problem?!!? My PCP arranged this at 3:45 PM! I was suppose to just get stablized here and go there!" He said, "We didn't know about this." I said, "Get out to your desk and FIND MY ORDERS and I'm not going ANYWHERE but in a SQUAD to ST. ANN'S!" I lost consiousness again. Any time I had to exert myself at all, it took everything from me. The next thing I remember was that they said my ride was "here".
I got into the squad and they took care of me! It was Critical Life who was taking me! I don't know what those men looked like, but they were saving me! I remember the one man saying to me, "Hold on, we've got you now! We've got you on bolus". I said, "Wide open." They said, "Yes, that means wide open! We've got it coming to you as fast as we can!" I heard him say to the other guy, we better get the defib kit ready, just in case." I thought to myself, "Yeah, I'm pretty close to dying! So much for "stable"!" I don't remember much of anything else. At one point, they asked me if I knew where I was suppose to be. I said, "St. Ann's". There has been question if I ended up at OSU in between hospitals. The squad report says I didn't. Another friend had called my hospital and was told I had been taken to OSU. A few days after I found this out, my doctor at St. Ann's came by and asked me if I went to OSU between my local hospital and St. Ann's. I said I didn't know. So, there is still confusion about that. He must have read something on some report that made him think I went to OSU as well. During the ride, I tried to open my eyes once, and felt like I was going to puke, so I closed them. As long as I kept them closed, I didn't feel like puking. I never once puked through this whole crisis!
From there, the doctors at St. Ann's told me I was in ICU for 2 or 3 hrs. so they could get me stable! Yet I was supposedly stable at my local hospital who was about to send me packing and send me home again! I don't remember any of that! They had to give me 200 mg. every 6 hrs. for the first day, then we started to decrease my dose. I was in the hospital from Oct. 28th (I got in there just after midnight) until Nov. 2nd. My legs were extremely weak. Probably a combination of the crisis, then high steroids, then the wean. I'm now going to physical therapy 2x a week, to rebuild my muscles. My hips are extremely weak.
Before I left the hospital, my doctors told me, "Honey, even though you know we told you that you were in septic shock, you don't even begin to know how bad you were!" So much for being "stable" at the other hospital! I am still waiting for ALL of my records to come in. I have some, which have incomplete reports. Only told from their side of the story. I know that once I was stable, and able to drink, they made me drink potassium from a cup, while they were also giving it to me in my IV. That's how bad I was! They don't make you drink it while it's coming in your IV, unless you are EXTREMELY low! I continue to need the potassium, so I wonder if my kidneys took a pretty hard hit from this crisis. More tests to follow!
I've been crusing along really well since my BLA, until Oct. 27, 2010. First, lets back up a bit. I had my gallbladder removed on Tues., Oct. 12, 2010. They found an umbilical hernia and repaired that at the same time. It was incarcerated, which means "something" was going through the hernia. In my case, it was fat growing through. The fat was removed and the hernia repaird. I had noticed after this surgery that I had some urinary urgency. I would not feel like I needed to "go", and then all of a sudden, I would need to go, and it was "right now"! I figured with all they had done, and filling my abdomen with air, my bladder may have shifted or something. This was the ONLY symptom I had. No burning, no dark urine, no foul odor.
Fast forward to Tues., Oct. 19th. My husband left for Belgium on a business trip. No biggie. He's been on trips before and I've been fine. I'm never totally by myself. I have my kids here, and my cousin close by. I got my flu vaccine on Friday, the 22nd. I think it was the next night, one of my kids had the flu! Go figure! Since my hubby was gone, I had the honors of cleaning up the mess! I washed my hands a lot and used hand sanitizer and Lysol. I even had my son drive me to Wal-Mart to get a spot bot to shampoo the carpet, and minimize my contact. It didn't stop me from getting the flu, and my shot had not really had time to work (if it even covered this particular strain).
Now, we will fast forward a few days to the morning of Oct. 26th, which was a Tues. morning. It's now 2 weeks after my gallbladder/hernia surgery, and one week after my husband left. I was going to have an open house for a new business on Tues. night (this night) and Thurs. night. I woke up Tuesday morning feeling sick to my stomach. I thought to myself, "Oh great! I'm getting the flu!" I took extra hydrocortisone, like I do when I'm sick, and I felt better, and actually felt fine until about 3 PM. I had run out to a store to get a few things. While I was there, I noticed my heart felt like it would speed up and slow down. I tried to smile at a child who passed me, and my smile felt crooked and weird. I knew something was wrong, so I got checked out of the store and hurried home. I only live about 2 miles from anything in our town, so it's not a long trip. About 5 min. and I'm home. I took more hydro. I have no recollection of how much over the course of this day. I just know I took more. My normal dose is 10 mg., and I'd take 5 mg. more, or 10 mg. It helped for a while, but then I'd feel my heart start speeding up and slowing down again, and I knew I needed more hydro. That was my only symptom that something was wrong. It ended up that nobody showed up for the open house this night, so my cousin, who was with me, and I, closed up the open house and we drove to her house, which is about 5 or 6 houses away. We ordered some supper. I noticed I was speed talking, but didn't think a lot about it. I was excited about my new business. Right before we left my house, I had the urinary urgency again. I told my cousin I'd been having that since surgery. When I was sitting at her house, I started not feeling good again. I started putting pieces of the puzzle together. I'd been taking more hydro than normal through the day, even more than when I would normally get the flu. It would help for a while, then I needed more. I had the urinary urgency, and had just had gallbladder surgery 2 weeks before. It dawned on me that I probably had a UTI along with the flu! So, we left her house, and went back to mine. I decided I'd just use my shot and stress dose instead of taking the med orally. I felt so much better, so I sat and talked to my kids for a while, to see how it would go. My oldest son, Caleb is 18, and my kids are fully aware of what a crisis is. I felt great, for about an hour, and then I had that sinking feeling again, and my heart was speeding up/slowing down. I told him we better head to the ER so I could get some IV steroids and fluids. I was obviously headed for a crisis. I didn't think it would be a big deal. It wouldn't have, if they would have treated me properly when I told them to!
We got to the ER around 1:30 AM. I gave them my crisis letter. I couldn't find the one from Dr. Friedman, so I took Dr. Holmes that I still had. Even though he is not technically still my doctor, the rules are still the same! I also wear my medic alert bracelet and it has it spelled out on the back, what they are suppose to do! It says on the front:
Grace XXXXXX
NO ADRENALS
ADRENAL CRISIS
My endo's name
My endo's phone number
On the back it says:
100 mg. solu-cortef
in 50 cc of NS in IV
over 15-30 min.
PCP's name
PCP's number
I checked in, and they told me to have a seat. They called me back to triage after 10-15 min. I went back to the waiting room, to wait for registration. I exchanged all of the ins. info. I waited again. I don't know how long between all of this. I finally got back to see the doctor. He was nice, but not very knowledeable about adrenal crisis. He said I probably had a UTI brewing from the gallbladder surgery, and was going to send me home with an antibiotic and an antibiotic prescription. I asked if he was going to check my electrolytes. He didn't see the need. I told him I didn't feel good, and didn't feel comfortable going home without knowing my electrolytes were in the right ranges. All this time, my body was using up the stress dose shot I had taken. He asked me which electrolytes should be checked (DUH!)! I told him mainly sodium, potassium, and magnesium. He said ok and ordered those. I had given them a urine sample that was sent to the lab. They came in and drew my blood and sent it off to the lab. He came back and told me my urine looked fine, but they were going to treat me for a UTI anyway, as that was the most likely culprit. He decided he would go ahead and treat me as if I were in a crisis. He said something about giving me steroids. They started an IV, then we waited. We were waiting on the steroids and I was getting loopy. I was talking to my son. I knew I sounded loopy. I felt loopy. At one point, I felt like sitting up on the bed and yelling "Whoo". I told my son this, and told him I was getting loopy. I asked him if he notice. He said, "Mom, you've been getting loopy for a while." I started telling him I loved him and I was sorry he had to go through this with me, then I was crying, then I was laughing because I was crying. Caleb said, "I'm going to go see where those steroids are!"
Right here, it gets really confusing because a lot of things happened at once. Caleb left the room to get the doc and find out where my steroids were. He told the doctor, "I know my mom, and she's not acting right. She's getting really loopy". The doc said he didn't want to give me my steroids until the results of my blood work came back from the lab. There was a nurse standing there who looked through a pile of lab papers. She asked my name, and found my labs in the stack. The doctor looked at them, and said they were fine, I didn't need my steroids. Now, mind you, these were drawn not too long after getting into the hospital and reflecting my stress dose shot of 100 mg. The doctor told my son I'd get better since my labs were ok, and he didn't want to give me the streoids because in his words, "She doesn't need them". After the doctor told Caleb my labs were "Fine". Caleb said, "Well, she's not fine." The doc threw the labs up in his face and said I was fine (again). Caleb told him if I was not acting better in 5 to 10 min. he wanted the doctor to go ahead and give me the steroids. He was trying to work with the doctor, but he knew what I needed!
In the mean time... I was in the room alone, and I started sinking quickly! I yelled out for Caleb to come quickly and bring my shot! I didn't know what all had been happening out at the desk. I lost control of my bladder and peed all over the bed. Caleb tried to hand my emergency kit to the doc and he told the doctor to give me my shot. The doctor said, "I'm not giving her that shot! She doesn't need it!" He was telling me that there was nothing wrong with me. He said I was healthy and that I was just having a panic attack! I told him I DID need my shot, and to please give it to me. He refused. He said again, that I didn't need it, and I was "Just having a panic attack". I told the doctor that he must want me to die, and that he was killing me! He said I wasn't going to die.. etc. Caleb was trying to ask the doctor if it would hurt me if I had my steroids. The doc wouldn't answer him. He just kept saying I didn't need it. Caleb said, "Oh, forget this!" He whipped out his cell phone and called my mother-in-law to ask her what to do. She must have said that same thing as Caleb, to find out if it would hurt me to give it to me and let me do it myself. Caleb could not get an answer from to doc, so he stepped close to make eye contact with the doc and ask him again. The doctor went off, and jumped back and yelled, "Call the cops! Call security! This kid tried to come at me!"
At this point, the whole event was extreme stress on me, and sent me into a seizure. I peed myself again. My head slammed back into the bed and my back arched off of the bed. The doctor didn't even pay attention to me at all. Once the cops took Caleb out, the doc walked out of the room and left me. (Thank God for my nurse! She was my angel! She stayed with me. She told me the docs were overboard and she knew I needed my shot!) As my body arched, I felt my body pulling to the right. I knew I was about to die. I could feel the tug of my spirit trying to leave my body. The Lord and I had a quick talk! I told him not now, not like this! Not with my husband in Belgium, my kid in jail (he didn't go to jail, but I didn't know that at the time. I just knew they took him away.) and not with my other kids at home! They need me! I asked God to give me clarity of mind and not be loopy and let me reason with this doc who was being unreasonable!
I snapped out of that seizure and back to the room. I could talk again. The doctor came back to the room and I told him I was asking him one last time, if he would help me. I said, "Sir, do you not agree there is something wrong with me? I was not like this when I came in. Something has changed. I am loopy and I have no control over it! I have peed myself!" He said yes, I was different, but it was because I was having a panic attack. I said, "Ok, fine. If this is just a panic attack, then give me something for the panic attack. I've never had a panic attack before, but I'm telling you, I NEED my steroids!" He wouldn't give me anything! Nothing for a painc attack, no steroids, and he didn't even want to give me the antibiotic he was going to send me home with. I had to beg for them to give me that pill, since he wouldn't give it to me in my IV! He said, "It's not going to work that fast". I said, "I know, but it can at least START working while I lay here and rot! You must want me to die!" He said he didn't want me to die. I said, "Yes you do, because you are killing me! I need my steroids! I have asked for help and you are not helping me." I asked him one last time if he was going to help me. He said no, I didn't need anything. I said, "OK, fine! You get out of my face! You get me dismissed from this hell hole! Don't you come back in this room! You send someone else to do it!" My nurse heard everything! So did the security guard who was standing outside my room! He did let me swollow that one antibiotic pill before I left, and he sent me home with a prescription for antibiotics.
They dismissed me and my nurse walked me out toward the lobby. She had to hold on to me to steady me as I walked. I got to the lobby and was so out of it, I started to walk out of the hospital, and realized I didn't have a ride. The nurse had told me I could call family from a phone. I turned around and saw people at the desk. I walked over and told them I needed a phone. The lady pointed toward the area where the phone is. She said it was down by the vending machines. I started walking in that direction and went past the phone and vending machines. I started back through the ER doors, and thought, "No, I don't want to go there! They tried to kill me! I don't want to see them again!" I turned around and saw the phone on the wall. My hands were shaking as I lifted the phone. My eyes were blurry. I couldn't remember phone numbers. I started rattling off numbers in my head and came up with my cousin's number. I walked outside and sat on a bench, waiting for her to come get me. My nurse had given me back the emergency papers I took in. She put a sticker on them that had the doctor's name, and the date I went in. I didn't remember this. I saw the papers on my fridge a week later, and wondered where they came from. My cousin told me I brought them home from the hospital that night.
I'll interject one point here. I had a friend in CA that Caleb found online when he got home. The cop was really nice and didn't take him to jail. He told him to go home and get help for me. Caleb found a friend of mine online. She helped him try to page my doctor in CA, and then she called the hospital herself. She spoke with the head nurse. She told them she was a patient advocate for me. She told them I have no adrenals, and I had a medic alert and a crisis letter, and that they needed to give me my steroids and an antibiotic. The nurse told her that is not "their" protocol! She said the doc would decide what I needed and that I didn't need my steroids. I was "just having a panic attack"! Again, they refused to listen to anyone! The doc told me that night, that there were 4 medical personel on staff, and they all decided that a panic attack was my best diagnosis!! UNBELIEVEABLE! I was in that ER from around 1:30 am to 6:00 AM, with no help whatsoever!
So, I got home, and gave myself another shot, and went to bed. I slept 6 hrs. and then got up and called my PCP. They got me in at 3:45 PM. While I was there, and told him what had happened, I had to stress dose with 200 mg. The 100 mg. was not enough, and not lasting! I did 200 mg. in about a 15 min. time span. When my doctor walked out to call in a direct admit for me to St. Ann's hospital in Westerville, OH, I had to use my second shot. I sent my son after the doctor and I laid down on the table. Everyone in that office came in to help me! They started oxygen, took my blood pressure, etc. My nurse practitioner told me later, that I was struggling to get my thoughts together to talk to them that day. They called the squad to get me to the local hospital that tried to kill me less than 12 hrs. before. I needed immediate help, and that was the closest hospital. I was to go in and get my IV, steroids, and antibiotic started, then go to St. Ann's once I was stable. My PCP made copies of my mediciation list, 2 emergency letters (one from Dr. Friedman, and one from Dr. Holmes), he made a copy of my surgical report from Dr. Chiang, stating that my adrenals had been removed. He sent all of this to the hospital with me, gave my son a copy, and he took a copy himself! When the squad arrived, he told the EMT'S that I was his patient, and I had no adrenals. He told them this was not adrenal insufficiency, this was an ADRENAL CRISIS! He told them I was to get my fluids, steroid, and antibiotic STAT when I got over to the hospital. He is just a few businesses down from the hospital. He followed the squad to the hospital from his office! He walked in behind us and gave the ER staff my orders, told them what to do, and left. I don't know exactly what he said to them, but I know he told them to get this stuff started and take care of me. At the same time, the EMT's were handing me off to the next ER doctor.
This guy says to me, "Now honey, it's gonna be about 30-45 min. before we can get to you. We had a bad wreck and some head trauma's and some cardiac patients come in". I sat up on my gurney and said, "SIR! Do you not understand what STAT means?!!? You are a doctor and you are suppose to know this stuff! STAT means do it RIGHT NOW, not in 30 - 45 min.! I don't have that long to wait!!" I told them the ER had tried to kill me when I was in there earlier and I'd been in a crisis mode all day. He said, "Just calm down. We will get to you as soon as we can." They stuck me in a room and left. A lab tech came in and started asking me what kinds of medicine I take. I said, "I don't have time for this! My doc sent that! Find it!" He said, "I don't see it anywhere. Can you just tell me what all you take?" I said, "FIND IT!" I think I passed out after that. The next thing I know, the doctor shows up. He said, "Now honey, tell me what happened over the last 12 hrs. or so." I touched his hand and said, "Sir, please know I'm not trying to be obstinate. Once I get my meds, I'll tell you anything you want to know." He tried to talk to me some more, but I shut down. I chanted, "IV, steroids, IV, steroids..." I don't know how many times I got it out before passing out again.
The lab guy came back in at some point and wanted to draw blood. He said, "Bad news! Your veins have collapsed!" I thought, "Gee, ya think I'm telling the truth now?" I couldn't talk. He poked and got "some" blood. He said he hoped it was enough, and ran off to the lab with it. He came running back and said, "Bad news! Your blood is a mess! You are septic! We need to get atrial gasses!" I thought to myself, "Oh no! This is going to hurt!" I've heard that is a painful procedure. I remember a nurse coming in to help the lab tech, since my veins were collapsed. She picked up my arm and it was limp and flopping everywhere. I had no control over it. I never felt the first poke from the atrial gas draw. I don't even remember them doing it. I think I passed out again! The doctor came back in at some point and asked ME how much steroids I WANTED! I was loopy and got so excited when he said "steroids". I said, "OH... let's see... 100 mg. is the normal stress dose, but I had 200 mg. at my doctor's and that wasn't enough because I'm really sick. Maybe we should start with 300... no, I'm already behind, maybe 400... maybe 500... Oh, I don't know. You just pick something. Anything is better than nothing." He ran to the door and whispered something to the lab tech. The rest of the night is pretty much a blur. I remember that they FINALLY let my family come back with me. At this point, I couldn't really see them. I could make out the shape of their body and color of their clothes, so I knew it was them. My cousin thought I was sleeping a lot. I was in and out of consiousness! She said I would talk to them and I made sense, so they thought I was ok. I gave my son detailed instructions on what to do with the other kids, but I didn't remember it! The nurse came back to my room around 10 PM or so, and told me I was stable and they were going to dismiss me! I had enough sense to know I was not stable. I told them they were not sending me anywhere until I had my "escort" (meaning squad) to St. Ann's!" He said, "Who arranged this? When did this happen?" I said, "What is your people's problem?!!? My PCP arranged this at 3:45 PM! I was suppose to just get stablized here and go there!" He said, "We didn't know about this." I said, "Get out to your desk and FIND MY ORDERS and I'm not going ANYWHERE but in a SQUAD to ST. ANN'S!" I lost consiousness again. Any time I had to exert myself at all, it took everything from me. The next thing I remember was that they said my ride was "here".
I got into the squad and they took care of me! It was Critical Life who was taking me! I don't know what those men looked like, but they were saving me! I remember the one man saying to me, "Hold on, we've got you now! We've got you on bolus". I said, "Wide open." They said, "Yes, that means wide open! We've got it coming to you as fast as we can!" I heard him say to the other guy, we better get the defib kit ready, just in case." I thought to myself, "Yeah, I'm pretty close to dying! So much for "stable"!" I don't remember much of anything else. At one point, they asked me if I knew where I was suppose to be. I said, "St. Ann's". There has been question if I ended up at OSU in between hospitals. The squad report says I didn't. Another friend had called my hospital and was told I had been taken to OSU. A few days after I found this out, my doctor at St. Ann's came by and asked me if I went to OSU between my local hospital and St. Ann's. I said I didn't know. So, there is still confusion about that. He must have read something on some report that made him think I went to OSU as well. During the ride, I tried to open my eyes once, and felt like I was going to puke, so I closed them. As long as I kept them closed, I didn't feel like puking. I never once puked through this whole crisis!
From there, the doctors at St. Ann's told me I was in ICU for 2 or 3 hrs. so they could get me stable! Yet I was supposedly stable at my local hospital who was about to send me packing and send me home again! I don't remember any of that! They had to give me 200 mg. every 6 hrs. for the first day, then we started to decrease my dose. I was in the hospital from Oct. 28th (I got in there just after midnight) until Nov. 2nd. My legs were extremely weak. Probably a combination of the crisis, then high steroids, then the wean. I'm now going to physical therapy 2x a week, to rebuild my muscles. My hips are extremely weak.
Before I left the hospital, my doctors told me, "Honey, even though you know we told you that you were in septic shock, you don't even begin to know how bad you were!" So much for being "stable" at the other hospital! I am still waiting for ALL of my records to come in. I have some, which have incomplete reports. Only told from their side of the story. I know that once I was stable, and able to drink, they made me drink potassium from a cup, while they were also giving it to me in my IV. That's how bad I was! They don't make you drink it while it's coming in your IV, unless you are EXTREMELY low! I continue to need the potassium, so I wonder if my kidneys took a pretty hard hit from this crisis. More tests to follow!
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