Merde! The big story
Well, yesterday I had the big appointment at the Endo?s [Endocrinologist- supposed to be the experts on Cushing?s and treat a lot of diabetics, too] and whoa was it enlightening. The whole time I?m thinking he looks like someone, only a bit younger, and I got this face in my mind but can?t place the name; then I think of it?he looks very much like Donald Rumsfeld! HA HA HA. He does. Really. The guy that headed up our National Security in the USA. Ha ha ha. So, my doctor, Dr. F, has been waiting for this appointment, hoping the Endo can shed some light on what?s going on with me. He has a beautiful office in Medford, and I decided to brave the room alone, although YES my mom was in the waiting room because I didn?t want to drive alone. She drove there in fact, and I drove home. We got a latte at Starbucks on the way home, too yummmmy treat. The Endo doctor, Dr. T, didn?t keep me waiting long in his oh-so-posh waiting room. He was there quickly. I stepped up onto the whale scale, which was a good sign by the way?for him to have a scale that is for big folks. I saw I have gained 8 pounds since starting insulin. Hmm. Intelesting. Especially since I have cut sugar out of my diet so much, and have been eating pretty healthily. Good ole Cushing?s?easy to see why some resort to stomach stapling, but it?s too bad they don?t understand it isn?t what a cushie eats, it?s that we cannot metabolize foods properly. Instead of a lot of the fat being burned off and out, it stays as we have a reverse metabolism. Anyways. One of the few diseases that actually make you gain weight, regardless of what you eat, how much you exercise, or anything. So yeah?usually I cannot gain weight that isn?t pure water weight; which tells me it?s medication causing a rise in weight. I had prepared my notes and given them to the nurse, as well as my before and ?getting cushie? photos. Current meds, diagnoses, previous surgeries, etc. I do it all. Which was good as he said he didn?t get much from Dr. F. The first thing he did was shake my hand and smile at me. How nice. I felt immediately calmed by his demeanor, something that oh let?s say doesn?t happen much! Then he asked me who my primary doctor was in a puzzled way, and I said Dr. F. He said it can?t be the Dr. F. I am thinking of? and he described her to me, and I said yes, that is her. He was shocked, said he didn?t know she was practicing here again. I said yes... doctors are turning me away now; saying I?m too complicated, they don?t want to help me. Anyways. We moved on from talk of Dr. F. He asked what he could help me with that day. I told him I needed an Endocrinologist to treat me, and to help me in my treatment. And also mentioned that Dr. F wanted him in on my treatment. He asked me about my meds, and said the weight gain is from the Actos, which is an oral diabetes pill, as well as the insulin. We decided to STOP the Actos; he said it wasn?t helping me anyways. One less pill? I am SO there. No problem, doc! Nix. Then, he asked me how I got on the steroids. How this all started. I think I sighed, because he said to start from the beginning so he gets a clear picture as to why I am currently taking three times the amount of steroids a person with no adrenal function [usually referred to as ?Addisonian?] needs.I took him back with me to 1994. Indiana. I got a cold; then bronchitis. Coughed so hard I broke a rib. I was 22. I was working three jobs but was healthy enough. I couldn?t breathe! I had to go to the emergency room. Repeatedly. They gave me breathing treatments, and they helped for the crises, but I would get home and within days I would have trouble breathing again. I wasn?t getting over this bout of bronchitis. I had had bronchitis often, starting in my teens. So the doctors in the emergency room [i had no insurance at all and didn?t qualify for welfare medical benefits] gave me a medrol pack: steroids. I finished it, I didn?t notice much improvement. So they gave me another one. Then, straight prednisone. I got urticaria, hives, all over my face and chest and upper arms, immediately. They said it must be an allergic reaction to a food, something in my environment. They didn?t listen when I said I wasn?t feeling well, not better but worse, and that I have never had asthma or hives before in my LIFE. So, they gave me more steroids. See the pattern here yes? Only, when I tried to stop taking them, I would get really sick. Nauseas. Dizzy. Felt like my heart would bounce out of my chest. Shaky. Just something I have never felt before. It was really scary, and no one told me to taper? they didn?t tell me anything. They just kept giving me steroids, telling me they would help. But they didn?t. And once I thought to stop them myself, I didn?t know how and didn?t do it right. I didn?t know it at the time, but I became severely depressed. I had never EVER been depressed before. I gained weight despite not eating much, as it meant leaving my room and I tried to stay in bed and sleep as much as possible. I didn?t even visit the bathroom often and that more than anything told me I needed to pack it up and go home. To my mom. That I wasn?t doing so well and I didn?t know why.When I got home, my mom of course was horrified at my skin, my weight change, everything. My hair? was curly. It had always had body, but now was in ringlets for f*?s sake! I had no insurance so went to a dermatologist for biopsies on the hives, thinking that would tell us if it was an allergy. I can kind of remember my mom telling me it?s the steroids, but it wasn?t computing. I never thought one pill could do so much damage. Well, eventually I went back to work, got insurance, and went on with my life many pounds heavier, and a whole lot sicker. This quest for answers continued for many years. Fast forward to October 6, 2000, when I had a kidney infection that caused so much pain and despite many injections and antibiotics, wouldn?t go away. I was having trouble breathing again, I couldn?t go up a flight of stairs anymore without it being VISABLY worrying to anyone hearing me huff and puff, and my face was beet red. I was so hot, all the time. I gained weight in that month so much weight it seems. I thought I was just fat? and I didn?t know how wrong I was until I was in the hospital for four days with the kidney infection. The steroids kept it from showing to be as bad as it was. I was on morphine and still the pain was awful. I was combative and showed changes in personality. I was nauseas to point of not being able to talk, but I couldn?t throw up. No one knew what was wrong, and my doctor was an ass, so my mom and sister got me out of there. I never worked again.I changed insurance plans back to the carrier I had mostly used; they weren?t good, but I figured I had to try something. A doctor sent me to an Endo, just to ?rule out? anything metabolically going on. He took one look at me, said I had Cushing?s syndrome brought on by continued use of steroids, and ordered two tests to prove it. One was to pee in a jug for a day?easy. The other was to take some more, high potency corticosteroids, called dexamethasone, or a ?dex suppression test? which I know now to be contraindicated with steroid-related Cushing?s. I didn?t know a thing at the time. He was the specialist, he should know, right? Wrong. It would have been okay too, if he hadn?t of forgotten to take me off the steroids after a 24 hour period. That?s all the test is for? 24 hours. Well, I was on the test for two months. He kept prescribing steroids for me. Told me to take them; all I knew was that I had to take them. He said so. I gained 80 pounds in those two months. I was so horribly swollen with water I lived on the couch, as I couldn?t get in and out of bed anymore. I developed straie, deep purplish stretch marks that are caused by an increase in cortisol [aka adrenalin] which is exactly what steroids are. My face was humongous?it?s called a ?moon? face and is also a hallmark symptom of Cushing's. I grew a hump on my back?called a ?buffalo hump? ironically. I was told in the past it was fat?now I know it too is a sign of Cushing's with excess cortisol accumulating in the face, the back, and the neck. My face has been so swollen I could not see over my cheeks to watch TV! Argh.I developed diabetes during this time. My ?time on the couch? is what I call it. I slept one hour at a time, no MORE than 3 hours a night, for 3 months straight. I was sleep deprived, depressed, and angry and most of all quite confused. How did I go from working one day, to a kidney infection the next, to Cushing?s? Well, I stopped asking that question years ago. No one knows. It?s all conjecture at this stage. Now, I want to know how to get RID of Cushing?s. Dr. T took notes. Then, he said he would like to tell me what he thinks. He said in the nicest way possible that I go against everything he knows about Cushing?s, as far as getting off the steroids goes. That we now know, it is documented NOW, that when I taper DOWN on the steroids, my blood sugar levels go UP and my diabetes goes wonky?this isn?t supposed to happen. When you go down on steroids, the blood sugars should go down, the heart rate go slower, the blood pressure a little bit lower. But the opposite is happening to me. And he said, and I quote: ?Adrienne, you are out of my league. I can?t help you.? He said he could waste my time and talk to me for another three hours easily, but in the end the result is the same: He can?t help me because he doesn?t understand what is wrong with me. He said I need to see the ?big wigs?? up at Oregon Health Sciences University. A big Cushing?s unit there, people go to Portland from all over the USA. I know that Dr. Ludlam and Dr. Cook are there, so I mentioned those names and he said he would be contacting them. He didn?t seem too confident that they will treat me though, and I have to think it?s because I don?t have the tumor variety of Cushing?s aka Cushing?s Disease, but the steroidal iatrogenic [doctor caused] strain known as Cushing?s Syndrome. People with steroidal Cushing?s are expected to get better, eventually. They are expected by the text books to go down 2.5mgs ? 5.0 mgs at a TIME until they are off steroids. Not 1mg and crash more often than not, like me. Sure there are some on the Cushing?s boards who have a big problem getting off the steroids; there are some even that cannot get off them, ever, because of the underlying condition that caused their doctors to put them on steroids to begin with. But they usually get down much farther than I have; I am on three TIMES the normal amount of steroids needed to fuel the body, necessary for life. And that only after tapering 1mg at a time for 18 months without any physician care! By MYSELF. Basically, I agree I need to see someone who can better care for me, but I don?t know if such a doctor exists. If I am truly an anomaly, and they haven?t seen anyone respond to steroids like I do, then what can THEY do, even? And, for the first time I am beginning to doubt myself! What if my lab results are wrong and I really DO have better blood sugar levels when I taper the steroids and I just ate more carbs or sugar that month and THAT?S what shows in the lab results? And on my blood sugar meter. Riiight. Okay. Maybe not. But I don?t understand THIS stupid freaking illness anymore. I?m too close to it now. It?s been too long that I?ve been researching any and all information on Cushing?s. I am losing my drive to know the answers; I am losing my motivation. Last night after I got home, I felt so scared. And hopeless. I feel hopeless still. I mean, if every specialist says I am ?special? and every doctor says I don?t respond normally to standard treatment, then I have to face the fact that what Dr. T said could be necessary. The one thing I always secretly wished for, when I was without much hope and my strength was waning. It sounds easy but it?s not, but he said I should be, ?In the hospital for supervised steroid withdrawal, for as long as six months? if necessary. Yeah I used to think that was the way to go?to have the doctors SEE how my body and mind reacts to the tapering of steroids firsthand. I mean, it makes sense that would DO it finally, right? And, I would be IN the hospital and able to be helped when needed. Only, I don?t TRUST them anymore. If I crash in the hospital, if my blood sugars skyrocket, my heart rate increase, my blood pressure increase, then that?s fairly easy to see and to treat without steroids, I hope. I hope. When in the hospital. BUT, they can?t SEE how I feel inside: they don?t see when I am so confused I can barely remember my own name. How time has little meaning to me, and one day can seem like an hour. How restless I can be when in the hospital, how nearly psychotic I can be when on a too fast tapering regimen. How restless leg syndrome makes me want to SCREAM and I always get it in the hospital. I would need copious amounts of Klonopin. For sure. Will they prescribe it? Will they understand?The pain will be even worse in my hips, my back, and my muscles than it is even now, once tapering begins. Muscle fatigue is so severe with tapering for anyone, but very much so for me. The back itself? how would I stay in bed so much? How? will I handle the pain from the herniated discs in a hospital setting? I mean, I would still be on the methadone but now when it doesn?t work so well I can come online and distract my mind from it until it gets better. Laying down hurts it so much whereas sitting is the best position possible. And the hips good lord? those too. Especially the left. Well. We left it at that he would be contacting Dr. L in Oregon, at OHSU, as well as Dr. C at OHSU, if needed. He ordered a lot of blood work including a serum cortisol test, and an ACTH test, just to see where we?re at. I haven?t had an ACTH test, either ever or in a very, very long time so am glad he thought to order them. He will wait for the results; some should be in his office tomorrow. They couldn?t do the serum cortisol today when I was there because it has to be drawn between 8 and 9 in the morning and I got there at 10:15. Didn?t know that. In fact, I have always had 24 hour UFC?s and never have had a serum test done. Ought to be interesting!Dr. L did say that without me being off the steroids, he could not definitively say whether I had adrenal failure or not. I understand that: it?s what they have always said. My last 24 hour UFC test showed that I am NOT putting out my own cortisol; in the past it has said I was over producing as it showed the steroids, and not what the adrenal put out specifically. He didn?t seem to know that the tests now can eliminate the ingested steroids from the lab tests; it appears to be a new way of measuring the cortisol. I am not sure if I do not understand this, or if he just isn?t aware of it. Who knows? Anyways. He said in order to treat me, I would need to start going down 1mg at a time until I reach 15mgs, at least. Of course, 15mgs would be wonderful! Not perfect, but at least not three TIMES the amount I need to live, as it is now. Rather, it would be TWICE as much which is a 33% reduction which is always good. But I don?t think that will happen.I asked him if he would be there for me when/if I crashed. Would I be able to call him, and he could help me through the crisis? Because as of now, Dr. F doesn?t know how to treat me, works only two days a week, and has no hospital privileges. So she can?t really help me. She said as much, and told me NOT to go down on the steroids?she can?t support what she doesn?t understand. Upon hearing this, Dr. T told me he would not be there for me, as he also doesn?t understand my body?s reaction. No. The only thing to do would be to send me to OHSU and let them sort me out. If they can. Well, I BY CHANCE was talking to my Care Coordinator?a nurse?from my insurance company. I explained what was told to me; that I feel hopeless, there is nowhere for me to go here. Doctors are standing in line?to turn me away! And to tell me how ?special? I am; that they can?t and won?t help me. But I saw from the website that my insurance company doesn?t contract with OHSU hospital so I guess at 34 I was out of options. I told her it wasn?t like I don?t need new hips, and back surgery from the steroids. Yeah Riiight. Told her that I know now I will always be disabled. But that? that if I could just get rid of Cushing?s, I could have a shot at a more normal life. I may not be able to work again?or, if I do, it might only be part time or from home or doesn?t cause me to stand, sit or whatever too long, because of the bone destruction from the steroids. But that if I could get rid of the Cushing?s? just FEEL better. Well then anything would be worth it. She said out of network hospitalizations and appointments ARE allowed on my plan, in certain cases, at least. And that she would think it was the BEST place for me to go to! That they WOULD pay any and all expenses incurred for appointments, hospitalizations, and treatments at OHSU. The only thing they won?t pay for is housing accommodations while I am visiting for consultation, etc., so anytime I am there and NOT hospitalized, I will need to find housing. As well as for my mom. How could I even contemplate going 325 miles north for recurring treatment and possible long-term hospitalization without my mother? Geez. That would suck. I?d so do it though. So, I guess I am feeling some hope. But it?s scary. It?s all so very scary. What if they say, ?Sorry, we can?t help you because you don?t have any tumors.???? Or, what if they test me and see for themselves that indeed I can?t get off steroids, ever? Then what do I do? Well, I guess then I would know, at least. Right. Right? If I have to live with Cushing?s forever, I don?t know how I can manage to stay positive. But, having a chance, no matter how slim, of getting off anything other than the normal maintenance dose for adrenal failure, well then that is worth the risk of being disappointed. But I am scared. Who will take care of my cats? Even for a short trip. I mean, I?m sure I can find a friend to feed them and scoop their litter but there?s no one to actually STAY with them. Not if mom is with me. I know if I was there for too long, more than a few days, that my mom would need to stay here and take care of both our feline broods. That?s fine. I?d have to do it alone. In a way. BUT, there are cushies there in Portland and Washington that could maybe visit me if I was going to be there too long, as well. That would be awesome. Oh, he said he doesn?t think PCOS would cause all my symptoms: Polycystic Ovarian Syndrome. It showed up in a pelvic MRI I had done recently for my hips. So, I will see a GYN and check. I dunno. I can?t remember all the symptoms and stuff and I am tired of researching! So? I can?t stop thinking about all this. And? I keep repeating to myself, ?What if this IS as good as it gets??
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