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Summer J (Summer84), Pituitary Bio

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Hello my name is summer

When I turn 30 I started having a lot of health problems by my 31st birthday I had a kidney stone that was the size of a cherry pit. After having multiple lipotripsy used to have that kidney stone removed the doctor insisted that I go and see a primary physician, by that time I haven’t seen a doctor in quite some time I have been treated for severe pain and all they would tell me they could make me comfortable but that they could not do anything for me so I stopped going.

My first doctor’s appointment with my new primary physician she asked me why it had been so long since I’ve seen a doctor and I told her that I was scared she told me that there was nothing to be scared about within three months of my first appointment she told me that she thought I had Cushing’s and that we needed to figure out if it was syndrome or disease.

She sent me to a endocrinologist and the first thing he told me was nobody has Cushing’s don’t worry about it the in endocrionologist apologized one month later and referred me to University of California San Francisco. The endocrinologist department at the University was able to discover that it was Cushing’s Disease after taking blood from my pituitary gland , I was introduced to the neurosurgery department and we scheduled my surgery my tumor was removed 1-24-17 . I was giving steroids and an appointment the following month as I reduced my steroid use I got sicker and sicker and ended up in the hospital unable to make it to my doctor’s appointment.

Unfortunately I was not prescribed anymore steroids. When I was finally well enough to make the journey to my doctors they realize their mistake apologized and changed their policies unfortunately during that year I was very sick in and out of the ICU. Neurosurgeon and my new endocrinologist were very surprised that I was able to survive not having any support. They had mentioned that they believe I had a very high long term exposure and that I had gone into shock multiple times. Its now been a year in a couple months and I’m feeling better , Im still having incredibly fatigued and have horrible insomnia but things are looking up.

PS .if this doesn’t make sense I have a little brain fog sorry…

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Rachel, Undiagnosed Bio

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Hello, my name is Rachel, and I am 31, will be 32 in 2 weeks.

I have been suffering from this medical condition, which I believe to be Cushing’s Syndrome, Adrenal Fatigue, or Pheochromocytoma, or maybe a mixture of all 3. I have had this for around 16 years, maybe longer, as I have had the classic “buffalo hump” on the back of my neck since I was 9 years old and have always had trouble with my weight. I have been on many diets since mid-childhood.

When I was around 13, I discovered a weight loss supplement, which I diligently took and lost 20 pounds over a 2-year period. I felt the best I have ever felt my entire life. I eventually had to stop taking it, though, due to not being allowed to bring any meds or supplements to my high school. I was not totally thin, but I looked pretty good. But during that first year of high school, my insomnia returned, and the rest of my symptoms started to emerge.

Autumn 1999 (when I was 14): I started getting daily headaches. Sometimes, they were minor, where I could ignore them, and other times they were so debilitating that I had to miss school. Because I wasn’t allowed to bring medication to school, I had to take Ibuprofen every morning as a preventative.

Autumn 2000: I suddenly gained 20 pounds in one month without changing anything in my diet. The fat was especially much around my face, neck, and torso.

Spring 2001: I developed fatigue, loss of concentration or “spacey-ness”, and being easily physically and mentally drained. I lost contact with many of my neighborhood friends, since I avoided lengthy times spent with them, and sometimes wouldn’t be when them at all because of not having enough energy.

Autumn 2001: Thinking I had hypothyroidism, I had my first doctor’s appointment over these symptoms, especially of the weight gain that was getting worse. Nothing showed up in tests, and the doctor wanted to put me on a 900 calorie diet. I never went back.

Summer 2002: My menstrual cycles became irregular, skipping sometimes 2 or 3 months at a time. Finally, they stopped altogether. I also gained another 20 pounds that upcoming school semester (16 weeks).

Summer 2003: I went to another doctor. She put me on birth control pills to get my menstrual cycles back. It helped a little, but they were very light with severe cramping. I gained an additional 20 pounds from the birth control pills and did not feel good. Once I got off of them, my menstruation stopped again, and I never lost those 20 pounds.

Autumn 2003: I went to another doctor from the University of Chicago. He tested various hormones and found that my androgen levels (mainly testosterone) were so high that it was off the charts. He thought that I might have Polycystic Ovarian Syndrome, so he entered me in several studies he was conducting for people with PCOS. I was given several test medications and had more tests done testing insulin resistance, glucose tolerance, and other things. Nothing came up positive. During that time, I also had an ultrasound done on my ovaries to check for cysts. Nothing showed up. After other tests were done, he concluded that I did not have PCOS, and that I might actually have Cushing’s Syndrome. I couldn’t go back to him, though, as his regular appointments without the studies were really costly. This whole time of the studies lasted till summer of 2004.

I also gained an additional 30 pounds during this time.

>My symptoms of fatigue and loss of concentration continued to worsen, so I had to become a part time student to avoid exhaustion with classes. I felt my worst usually starting around 1 or 2pm, and lasting till around 5pm.

Summer 2005: Diarrhea started abruptly and has been continuing ever since. A year later, I had discovered that caffeine could cause it, so I got off of all caffeine, which alleviated it for a few months. However, it returned shortly after, blossoming into 3 different kinds and becoming worse and more frequent over the years. I used to have it only at night, but now, I have it in the morning as well, and some at night, and sometimes some in the afternoon. I can have even 5 or more bouts of it a day, which makes it difficult for me in any public place. It slows me down in the mornings (as I sometimes have to spend an hour in the restroom) and often makes me late for things.

2006-2010: I have gone to many doctors over this time, each one testing my cortisol, TSH, T3 and T4, testosterone, DHEA, progesterone, and insulin levels, and each one coming up with nothing abnormal except high testosterone.

Spring 2009: I developed a candida skin infection that has been reoccurring since then. Antifungals do not take it away, only antibiotic ointments. However, even the antibiotic ointments do not take it completely away, as it keeps reoccurring and showing discoloration in spots where it had been previously.

Spring 2010: Episodes of light-headedness, shortness of breath, and rapid heart rate started appearing, ranging anywhere from 5 minutes to an hour in duration. They would come completely at random, sometimes 3 or more times a week, and sometimes not for several months.

2011: I developed slow motility, where it takes hours for my meals to digest. This made it hard for me to get to bed at a normal bedtime like 10pm, since I couldn’t lie down without getting horribly nauseous. This also affected my diarrhea, making it where I have to push to make it come out, since my intestines do not contract much to squeeze it out or they contract very slowly.

Summer and Autumn 2011: I went to 2 doctors in New York who also tested my cortisol levels and catecholamine levels to test for pheocromocytoma, which all came out normal. I also had an MRI done on my brain to check for growths on my pituitary gland. Nothing showed up with that, either. I also went to Mayo Clinic in Rochester, MN. My results in those tests also were all normal, and no diagnosis was made.

Spring 2012: My menstruation returned to regular monthly cycles.

Winter/Spring 2013: I suddenly started to become sensitive to cold, so winter became almost unbearable for me. This cold sensitivity has been increasing every year thereafter. Even temperatures in the 60-degree Fahrenheit range make me feel chilled and forced me to dress in double and triple layers of clothing.

Also, around this time, my fatigue reached a new level of severity, making my “dead” time duration between 12pm-6pm.

Spring 2014: My menstrual cycles suddenly changed again, where I had constant menstruation for over 3 months.

2015: My fatigue, again, worsened, making me so tired that I could fall asleep throughout the afternoon and most of the evening. This extreme tiredness would come especially shortly after I would eat a meal, particularly in the midday. This made studying for my classes very difficult and time consuming, since I was so slow.

I also started to notice I could feel a small lump on my upper left side, just below my ribcage. This lump started out the size of a golf ball and has increased to the size of a baseball. It makes me feel nauseous if it’s pressed on with little pressure and hurts when it’s pressed on hard.

My menstrual cycles became irregular again and have stayed that way ever since.

Spring 2016: After getting nowhere with endocrinologists, I went to see a gastroenterologist because of my diarrhea and lump. A CAT scan was done of my abdominal area showing nothing abnormal. In fact, the space where the lump should be in the pictures just shows empty blackness, no organs or growths whatsoever.

Over the course of these years, I have done a lot of my own research and have noticed that my symptoms all match 3 possible conditions: Cushing’s Syndrome, Adrenal Fatigue, and Pheocromocytoma. I am wondering if all these three conditions can coexist in the same body. I know that Cushing’s results from a growth on either the pituitary gland or the adrenal cortex of the adrenal gland, making the adrenal gland produce too much cortisol.

I also know that pheocromocytoma results from a growth on the medulla of the adrenal gland, producing high levels of catecholamines, which, for some reason, does not always show up in a blood test. And I know that adrenal fatigue results when the adrenal glands become exhausted from constantly producing high levels of cortisol during stress that lasts over a long period of time, so they don’t produce enough. So could it be that I have a growth on one of my adrenal glands that extends from the adrenal cortex into the adrenal medulla, causing the symptoms of Cushing’s and pheocromocytoma, while my other adrenal gland has adrenal fatigue? That would make sense why nothing shows up on the tests, because one adrenal gland is producing too much cortisol, and the other is not producing enough. So the two would cancel each other out, yet I could still experience symptoms.

I have gone to 12 doctors over these 16 years, and not a one has ever come up with a diagnosis or even cared about investigating the cause. They resist doing further testing and evaluating, because nothing shows up in the initial blood and urine tests. They don’t even believe me and think that it must be depression or that I am just making it all up. I have been criticized, rebuked, and laughed at by them. I even had a doctor chuckle as he told me, “You better get your periods back or you could get cancer of the uterus”. I have run out of doctors and have basically given up hope.

So where I am right now, spring 2017: My symptoms have gotten so bad that I am almost debilitated. Every day, I always wake up feeling just as tired as I did the night before. No matter how much sleep I get, I do not feel rejuvenated whatsoever. This makes it impossible for me to get up before noon, so often times, I am just eating breakfast/lunch around 3 or 4 o’clock in the afternoon. I have no energy all day long, and the fatigue makes me unable to do much of anything during the times I am awake. Most of the time, I feel like I am moving in slow motion, because time seems to pass by so quickly. I have to take frequent breaks from mental or physical tasks just to regain some strength and energy. I try to avoid social events, as I don’t have the energy to be with people and get easily stressed and drained. So I am alone much of the time. I can only take one class per semester in college now, as I don’t have enough energy to study.

I have acquired muscle weakness in my arms, hands and legs, that makes it incredibly difficult, and sometimes painful, to go up and down stairs, along with doing the process of going from sitting to standing or vise-versa. I appear as “lazy” since I can’t even get up from my chair to get something that is just a few feet away from me. The muscle weakness in my arms and hands makes it difficult to even do handwriting.

My memory if often foggy, also making studying difficult, as I can’t remember what I am reading. Many times, if a friend asks me what I have done during the last few days, I can’t remember. I can experience a fun event, and I still will forget and have to force myself to think about what it was. I feel like in a fog all day.

Almost every day, I will wake up with a headache, or I will get one over the course of the day. I have to take painkillers, such as Alleve, everyday just to keep my headaches under control. And sometimes, my headaches are so bad that they debilitate me. With those kinds of headaches, taking up to 12 Alleve in one day will not take them away.

Painful diarrhea keeps me in the restroom sometimes up to an hour or longer with each bout. I have to eat my evening meal earlier and earlier, so I don’t have to sit up late waiting for it to digest. I even have to keep from lying down for over an hour after drinking just water.

My immune system is also impaired, so I can get sick easily and have reoccurring candida infections. Colds and the flu hit me hard, often debilitating me for weeks. I take vitamin D3 to enhance my immune system to not get sick as often, since I have to ride the train and bus going to and from school. I have also acquired more allergies over these years. My nose has gotten really sensitive to perfumes and fragrances. I never used to be allergic to animals, but now, I can’t even go into a house that has pets without getting a bad sore throat and runny nose for 3 days after. And in general, I have noticed my lungs and nasal passages are producing more mucous, so I have to keep coughing and blowing my nose frequently, or I get a sore throat.

My menstrual cycles are very light and almost non-existent. I haven’t had one since January, and it’s now the beginning of April.

I am now 100 pounds overweight and can’t lose it, even with the same weight loss supplement I took before my first year of high school. The majority of the fat is around my face, neck, and torso, with some now accumulating on my upper arms and upper legs and pale purple stretch marks on my belly and upper arms. I have the typical fat distribution and appearance of Cushing’s Syndrome.

I still get the episodes where I experience a rapid heart rate, light-headedness, and shortness of breath. During those times, I have to breathe harder and just stop whatever I am doing. I have even almost felt like passing out at times.

I will be graduating in 4 weeks and am very afraid, as I don’t know how I will handle the stress and demands of a full time job, especially if I have to interact with people. I have very few friends, and half of my own family doesn’t believe me when I talk about my condition. I feel ugly and boring and have become very depressed. Is there ANYONE IN THE WORLD who will help me??? I hope someone (like a doctor perhaps) will read this bio of mine, and have compassion in their heart and be eager to help me.

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Matt, Undiagnosed Bio

6 Comments

Hello, my name is Matt. I am extremely desperate for answers as I simply do not want to live anymore in this condition. I have been suffering for years with something that I strongly believe was caused by continued use of inhaled corticosteroids (Azmacort asthma inhaler, and Fluticasone nose spray). I used these inhalers for about twenty years. 2 puffs of Azmacort every morning and every night for over 20 years.

From 1996 to 2007, I began to develop several health problems. These included severe neck pain, eye twitching, tremor, heartburn, aching teeth, vertigo attacks, peeling skin from my lips and inside my cheeks, a lower eyelid “cyst” that I had removed, an episode of thrush, depression, daily headaches, insomnia, and low energy.

In 2007, I took my inhalers and threw them out. I was trying to figure out if the inhalers were contributing to my health problems. Within months of discontinuing the use of the inhalers, a few of my symptoms went away, but most of them got worse and I developed more worsening problems- brain fog, crawling skin, constant eye pressure, a feeling of sand in my eyes under my eyelids, constant crying, strange pulling feelings in my eyes, cheeks forehead and scalp, muscle atrophy in my neck, face, and shoulders, withdrawl/hangover feelings, concentration/memory problems, suicidal tendencies.

I always assumed that the problems were caused by the inhalers and figured they would subside with time, and I still think that they may. I have always been optimistic for some reason that I am getting better, but the symptoms have still not gone away. It has been ten years now since I instantly quit the corticosteroids and like I said earlier, I am getting desperate. I have talked to dozens of doctors over the past ten years, and they ALL dismiss the idea that the inhalers caused my problem.

In fact, since my symptoms are all invisible, my MRIs are unremarkable, and my blood work is always in range, most of my doctors I am pretty sure think that I am crazy. Funny thing about that is that I have no reason to make up symptoms that I am suffering with. I have already distanced myself from all of my family and friends. I do not tell any of them how much I suffer, because it is so humiliating when people say that I am depressed, or need rest, or should cut down on stress.

In other words, nobody believes that I am truly sick. I am sure that if I killed myself tomorrow because of the pain, people would say that I was a lost soul, or lonely. I have trouble being around other people because I always feel like I need to cry and decompress. I had to resign from my teaching position because of my insomnia and lack of ability to concentrate. It was the one last thing that I loved. I tried to hang on as long as I could, but I felt that the pressure to be at work and perform well daily was not benefiting my health and probably harming it.

Anyway, here is where I stand right now–


I do seen an endocronologist. I found out years ago that my cortisol levels and most other hormones other than my testosterone are normal (my testosterone level was at 100 for God knows how long). I was shocked when I found that out. I was sure that my cortisol would be through the roof, but here is the thing– I NEVER had any blood tests done while I was taking the corticosteroids. Only years after discontinuing them.

In my opinion, my cortisol levels were elevated (or depressed) while I was on the steroids. I believe that the inhalers poisoned my body. 99% of my symptoms are in and around my mouth, neck, throat, head and eyes (right where the spray was going). I believe that my cortisol levels are normal now because I am no longer taking the inhalers and my body is making the correct amount. What happens, however, to all of the cortisol that was building up in my body if this was indeed happening?

I believe that my symptoms post-inhaler are due to my body trying to get back to normal. But ten years is a long time. I was sure that I would be better by now but I really dont know how long it takes to recover from what I did to my body with those corticosteroids. After all, I used Azmacort shortly after its inception and beyond the time that it was discontinued in the US, when I was ordering it online from the UK. There probably are not many if any people that used that inhaler as diligently and for as long as I did. I have always been thin my whole life, so I cannot say that I ever had a ton of fat on my body that would indicate Cushing’s.

In the past several years though, I have noticed that I am losing mass in my neck, face, and shoulders. My face is becoming more angular. The spot between my shoulders where a camels hump would be is becoming more and more concave. It seems like this is kind of the opposite or reverse of Cushing’s. Could this be because my body is trying to recover and slowly melting away the fat deposits on my face and neck?

Again, I am extremely desperate for answers and help. I look forward to being a part of this forum and eager to find out if anybody else out there has had a similar experience to what I have been going through. I have researched Cushing’s and other diseases for years. One thing I have never been able to find online is how long does it take to recover from Cushing’s. If I did, indeed, have Cushing’s, it would have been building up for nearly 20 years. What kind of recovery would be involved with unknowingly having Cushing’s for that long? I really need to find out if it is possible that I could still be recovering after 10 years off of the corticosteroids. I still have some faith, but that faith is definitely waning.

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Niamh (niamhiblog), Adrenal Bio

3 Comments

adrenal-medulla

Full link to my blog: https://niamhiblog.wordpress.com/

I will never forget the day my hair loss went from “God, don’t I leave a lot of hair around the apartment” to “F***!!!! ”. I’d always considered my hair as one of my best features, it was long, wavy, strong, shiny and I loved it! When I started to see handfuls coming out in the shower it was terrifying. I was like a chemotherapy patient, it was unstoppable and devastating. I saw up to three GPs (Family doctors) who all only seemed interested in the level of stress in my life. Not one of them really took me seriously, I did a couple of blood tests, out of my own persistence that something was wrong, but nothing jumped out of these results to my doctors. I kept being told that my hair was falling out because I was stressed but I was stressed because my hair was falling out!

To be fair, this was a particularly stressful time in my life. I had just finished a year working abroad, in Portugal, which I’d found very lonely and isolating. I’d just returned home to Cork but things didn’t pan out the way I had hoped they would on my return. I was living on my own and trying to reacclimatise to something which wasn’t the same. Around the week leading up to the extreme hair loss I’d found myself in a particularly stressful situation. After about two weeks the hair loss settled down from terrifying to worrying. Since no one seemed as bothered by it as I was, I let it take a back burner. The doctor told me it was normal, the hairdresser told me it was common, I fell into accepting that there wasn’t a problem.

Flash forward five months and I’m sitting in my bosses’ office for a meeting. I look down at my arm, both my arms are covered in purple spots. It’s not itchy. It looks like a rash. I run a glass over it. The spots don’t disappear. I let out a loud exhale “phew it’s not meningitis. I’m fine”. I go to carry on with the meeting. My boss is having absolutely none of it. She knows that whatever is on my arm is weird. So she bundles me into a taxi and sends me off to an urgent care clinic. Since I was working as a chemist at the time for a pharmaceutical company, the obvious questions were “were you in contact with any chemicals?”, “are you allergic to anything you’re working with?”. I knew I hadn’t been exposed to anything so I decided to tell the nurse about my hair loss. I can’t thank this woman enough for the next question she asked me. This was a moment, although I didn’t know it at the time, that went onto change my life. She asked me “has the shape of your face changed?” To this I went ABSOLUTELY!

I’d put on weight in the previous year. It had started when I was living in Portugal. I’d put it down to a diet of beer and white bread. I hadn’t known, but any friends who’d come to visit me had thought that I’d put on a very noticeable amount of weight in a very short time. But this hadn’t made sense to me. I was working out at least 5 days a week and even up to 7 days a week. I was lifting weights and getting weaker not stronger. My diet was excellent (except for the booze and cigarettes) but my face and middle just kept ballooning while my arms and legs were turning into sticks. My clothes weren’t fitting. I was ashamed of my face and belly. I wouldn’t let myself be photographed. I was disgusted by my own body.

So, this nurse spotted something which no one had spotted before. She believed me, she knew that something was wrong and she (along with my wonderful boss) started me along the road to diagnosis and recovery.

Next comes a tremendous mistake from me. My attitude of “era it will be grand” nearly ruined my life and landed me ill in a very serious way. If I’d done what I was supposed to do at this point my disease would have been diagnosed and treated before it started to run away, with me dragged along behind it. I know why I didn’t pursue diagnosis. I was lazy about doing the testing, the hair loss had calmed down, I still just thought I was fat and I didn’t realise how sick I was because I had so many symptoms which came on so gradually that they just became normal to me.

I had my first appointment with an endocrinologist in April 2015. Turns out she knew from one look at me what was wrong. She recommended a 24 hour urine test but I had to be at least 6 weeks off of oral contraceptives for the test. I went off the contraceptives but by the time the 6 weeks had passed I just didn’t bother. I didn’t want to carry around a pee bottle for the day and besides the hair loss had settled down and I wasn’t sick was I?

How did I not realise I was sick?

I’d almost gone bald
I was constantly covered in bruises for no reason which didn’t heal
I never got to the bottom of my strange rash
I was swimming in a constant brain fog
I couldn’t sleep at night but I was tired all day
I put all of my symptoms down to sessioning too hard, being hungover all the time and injuring myself when I was drunk.

That was until I woke up one morning at my friend’s house, admittedly after a night of drinking, without the use of my arms, legs or hands. I woke up really early in the bed with stiffness in my limbs. When I got out of bed my legs were no good to me. I dragged myself to the bathroom on my hands and knees and sat in the shower to wash myself. I went down the stairs on my bum, got into my car and tried to drive home to my mam’s house. It took me about an hour to do a 10 minute drive. I couldn’t get out of second gear because I couldn’t press the clutch, which was just as well because my right leg was no good for using the brakes. Once I got home, naturally I was a bit concerned but I’d loosened out after a bit of movement and strangely wasn’t all that bothered by my period of paralysis!

Once I walked in the back door of my house, with my mother behind me she spotted one of the oddest things! It was like someone had thrown a cup of coffee at the back of my head and it had dried on the back of my neck. At this stage my hair was so thin that the only way I wore it was in a bun at the back of my head. This strange staining was there for all the world to see! I’d no idea how long it had been there given it’s not a part of my body I spend much time looking at. Turns out it had been there about a week and I could even see it growing and spreading up into my hair line and around the front of my face.

Mam wanted me rushed to the emergency unit. I wasn’t so keen on that, so we compromised. It being a Saturday we went to the on call doctor. Now starts the saga of doctors prescribing me steroids, steroids and more steroids. Little did I know that my problem was having too much steroids. I hadn’t heard mention of the term “Cushings Syndrome”. Nobody had brought this up. I took the steroids I was prescribed. I went downhill. I wasn’t experiencing the paralysis but I was having horrendous joint pain. I would watch as my hands, elbows knees and ankles swelled to size of large oranges. I couldn’t use a pen with my swollen fingers. Stairs were a struggle with my swollen knees. I hobbled around like an old woman. I didn’t understand what was going on with my body. I was panicking. I went to my GP in Cork, she prescribed a higher dose of steroids. It was only worse I got. She prescribed higher doses of steroids again. I felt this doctor wasn’t helping me, she wasn’t listening to my concerns and her only idea was to keep upping my dose of corticosteroids. What a disaster!

Luckily, my aunt is a docotor in the major hospital in Cork. She got wind of my problems, pulled some strings and had me admitted to the acute care clinic in her hospital for the following day. This was the first of my “holidays to CUH” as I started to call them. Here I saw what I can only call a plethora of doctors. Consultants that take months to years to get appointments with were calling to check on me willy nilly. I saw emergency consultants, rheumatologists, dermatologists, radiologists and finally the endocrinologist. We were all working to the assumption that I had some strange sort of viral arthritis which was causing my joint pain and swelling.

face

It was here in hospital that someone got to the bottom of the strange coffee stain on the back of my neck. It was merely a fungal infection (tick off the symptom of persistent infections).

After having received a very stern talking to from the endrochronolgist I proceeded to do a battery of tests including 24 hour and 48 hour urine samples, dexamethasone 24 hour and 48 hour, several trips and “holidays to CUH” all culminating in a MRI to confirm that I had an adrenal tumour producing far and above the natural and required levels of cortisol. This was the answer to everything.

After my diagnosis I started reading up on the symptoms of Cushing’s Syndrome. I realised that I had every single symptom on the list. Things that I hadn’t even realised were wrong with me until I gave myself permission to be ill.

I had the stretch marks on my arms, sides and legs. I’d though these were from my weight gain but who gets stretch marks on their arms? Turns out my skin was so weak it was tearing.

The cognitive deficiencies. I am someone who had always prided themselves on their intelligence, ability to think on my feet, to understand things rather than learn them. I’d always been a high achiever. I’d noticed myself getting stupider. I would be looking at someone talking to me and I’d be trying to figure out what day of the week it was. I found holding a conversation extremely difficult and very stressful. I wasn’t able to engage with people.I wasn’t able to listen, concentrate or respond. My memory was non-existent. Trying to think was like trying to swim through a thick, gloopy soup. I had put this drop in mental ability down to the partying and finding out that maybe I wasn’t as capable as I thought I was in the working world.
Bio, Continued: The bruising. I was bruising my arm from putting my handbag on my shoulder. The purple dots were actually tiny bruises. My legs were constantly just purple. I couldn’t heal. I was doing so many blood tests that the skin on my arms was constantly purple and wouldn’t heal.

Lack of libido. What libido?!

Irregularities with my period. I wasn’t getting periods at all since I’d stopped using oral contraceptives. I knew I wasn’t pregnant, see the point above and thought that I was just skipping some periods.

Brittle bones. I was diagnosed with osteoporosis at 24.

Joint pain. I wasn’t able to bend my knees to get up or down stairs. My bedroom is three flights of stairs from the kitchen. More than once I ended up stranded in the kitchen, not able to get back upstairs to lie down on my bed and feel sorry for myself.

The swelling wasn’t confined to my joints. There were days my face was so swollen it was hard to see out my eyes as my cheeks inflated and rose to meet my brow bone.

Sleep. I’d turned into an insomniac who wandered the house late at night not awake enough to do something but still unable to sleep.

Body hair. I was managing to grow a beard despite going bald! I started to get my cheeks waxed thinking this was a normal cosmetic procedure that other girls just didn’t talk about.

Stress. The choice between two different types of cheese could cause me so much anguish as to leave me in tears.

Up until the point where I was diagnosed, I hadn’t allowed myself to be sick. After the diagnosis I never let myself feel sorry for myself. I just got on with it. Planned for surgery and that was it.

In October 2015 I underwent a full left adrenelectomy to remove a tumour from my adrenal gland.

After the surgery I’d a whole new condition to learn to deal with. My right adrenal had been suppressed while my tumour was active. This left me with no natural cortisol in my body. A 180 deg turnaround from being pumped up on steroids 24 hours a day. I was on replacement steroids but my body was readjusting. I slept most of every day. I couldn’t pick up a carton of milk. If I didn’t take my medication I was in serious trouble.

I was back at work the week before Christmas. This was much too big a leap! I’d been frustrated by the speed of my recovery. I recovered from surgery quickly but the recovery from Cushing’s was slower. I’d expected everything to just go back to normal after the surgery and hadn’t anticipated the gradual decline in symptoms. I ended up getting very sick with a virus and really thought my family would have me admitted to hospital. There are two days that all I can remember is lying on the couch sweating. I lost 8 lbs in a day! I’d pushed myself too far.

And yet I still didn’t learn! I’m not someone that likes to be inactive. I also just wanted life to go back to normal. I returned to work again in January on half days and gradually built myself up to working full days.

Slowly but surely, I was taking less and less medication. I was able to stay awake a little bit longer every day. My mind was coming back to me. I was losing the bright red colour from my face. One day I woke up, looked in the mirror and suddenly had cheek bones again. I looked like my old self. By January I’d gone from a dress size 14 to a 6 with hardly any weight loss. It was just like someone had stuck a pin in me and I was deflating back down to a regular size. My hair was growing back but still had horrible wispy ends so I chopped all the sickness out of my hair. By April I wasn’t taking any steroids. I’d again pushed myself to the limit and instead of tapering slowly had gone down in major jumps. Weeks where I was doing a major jump involved lots and lots of tears. And then some more tears.

By June I noticed that I hadn’t had a day where my joints were sore since I couldn’t remember when.

Things like falling down the stairs because my legs couldn’t support me won’t be forgotten. Standing at the top of the stairs and knowing I can’t get down. My hands turning into claws. Or accidentally going into steroid withdrawals a few days post surgery (I was the crazy patient running up and down the hospital corridor screaming and crying in the middle of the night). These won’t be forgotten but they will fade in importance. The things that won’t are my little brother coaching me through all the tubes I woke up with after surgery, my friends bringing me bottles of diet coke and fancy hummus in hospital, the friend who came to see me every day in hospital, the one who picked me up and took me home, my mam who told me I was brave and that I’d gone through a lot, and the boy who listened to me cry when the pain still hadn’t gone away.

As of today I have been declared fully recovered bar one more hurdle. My repeat bone density scan. In two weeks’ time I have to repeat this to see if I still have osteoporosis. Whatever about having a tumour at 23, being diagnosed with osteoporosis at 24 just isn’t on! I’ve been drinking plenty of milk and tons of cheese though so fingers crossed.

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Amee (Amee), Adrenal / Pituitary Bio

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adrenal_glands
Hmmm, where to start? “Hello” to one & all, & how I wish I had discovered this friendly & helpful site 3 years ago. Ah well, better late, than never, eh?

Anyway, back to me : in a nutshell – 47 year old single female, 87kg, 5’4″, Post Cushings Syndrome through Adrenal tumour & subsequent unilateral Adrenalectomy I’m now Hydrocortisone (HC) dependent , Hypothyroid (just switched to NDT & T3 combo from synthetic T4 & T3), Pituitary microadenoma.

Now for the details…..are you siting comfortably? I’ll try to keep to the plot ! Suffered with bouts of fatigue & depression since my early 20’s. Spells on different types of anti-depressants which didn’t help me much.

Skip to 2004,weight going up despite no change in eating/excercise habits (those intermittent years were filled with seeming to pick up every bug & cold that was going around & weirdly taking longer than others to get over illness) prescribed Zoladex implant to relieve very painful & intolerably heavy periods, along with severe mood swings.

Tiredness is now just an unwelcome fact of life for me, weight still increasing gradually. Developed Psoriasis.

June 2012 diagnosed Hypothyroid after completely breaking down in GP’s surgery & being referred to Endocrinologist. Signed off work for foreseeable future. Prescribed Levothyroxine, Zolpidem & Ramipril, weight goes up more. More investigations pinpointed extremely high cortisol levels, (I have all the physical signs of Cushings at this point – but Endo has not even mentioned the condition to me!)

Meanwhile referred to Neurologist for my now weekly migraines, prescribed Propranolol & he & Endo agree on cranial MRI scan to help both of their cases with me. Full body scan also booked. In the same week I learnt that I had both a tumour on my right Adrenal & also a Pituitary micro-adenoma. More tests which determine that it is the Adrenal tumour causing my Cushings (oh, & I had to ask Endo if what I had was Cushings – as he had still not even uttered it’s name to me! )

Unilateral Adrenalectomy performed Aug 2013 (had to fly 200 miles to have it done – alone – haven’t told my family who live 300 miles away about either tumour).

Post op weaned down from 40 mg to 17.5mg HC per day, over few months. Feb 2014 went into adrenal crisis & rushed to hospital – remaining adrenal obviously not working yet.

Since then, have had 9am bloods every 2 months & follows up with Endo & still no sign of life in Adrenal. Have lost only about 4kg max since the op – still obese & unable to loose weight & still have the classic Cushings apple shape.

In Aug 2015 returned to work full time, in a downgraded role, & have to up dose to 20mg HC just to get me through working day. Begged Endo for T3 to try alongside the Levo & was granted in Nov 2015 . Slight improvement at first, but short lived. Also i asked to come off Zoladex implant, to see If that side of things are any better yet. No period yet. Shattered & aching, have no social life or energy & spend weekends resting in lieu of working week & in prep for the next one, waning to be alone.

Grasping at straws to feel better so am now (since mid April 2016) self medicating on NDT & T3 as Endo does not support prescribing it. Endo does not want to see me now until Sept 2016 , when I am due an MRI again to check on the Pituitary tumour size/growth & have next 9am bloods.

That’s about it medically………quite enough for me, thanks ! P.s I have bad brain fog (& also Sinusitis at the mo) so may well have missed something & will probably remember it in about 3 days or so !!

Thanks for reading & welcome to my world : /

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Emily B-C (EmilyBC), Undiagnosed Bio

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undiagnosed3

 

Hi.  I am a 40 year old female who has been feeling “not quite right” for almost 10 years.  I have been tested on and off for many different things and have been diagnosed with Epstein Barr, Adrenal fatigue, and h.pylori during these years.  I continually have vitamin D deficiency issues.  I have a rash on my lower legs that never really heals even with the most powerful of steroid creams.

This year, I started feeling worse than usual.  I have zero energy and my brain is in a perpetual fog.  My muscles and body ache, my face is round, and I have gained 40+ lbs over the years.  There are days that I physically cannot get out of bed.  I have fainting spells and a racing heartbeat at times.  I crave carbs and salt.  There is not enough water in the world to drink and I have to run to the bathroom frequently.  No matter how hard I try the weight will not come off.  When I get massages my therapist tells me that my adrenal glands are swollen and I feel very nauseous every time she runs her hands over that spot.

I was an avid equestrian- 3 day eventer.  I was riding and showing no less than 3 times a week.  I was getting fit.  Now I am just a useless blob that can’t do anything.  I have been pushing to go to the barn to just groom and be with my horse as much as I can.  

My doctor found that I have an unusually high blood cell count a couple of months ago.  I was sent to a hematologist to find out why.  We did so many tests I quit counting.  The conclusion was that I am not sick enough to be sick.  So many tests were coming back normal or high normal.  No lupus, no leukemia, no answers.  I finally asked about Cushing’s because I have a majority of the symptoms listed.  My doctor was skeptical, but agreed to let me do a 24 hour urine test.  It came back high.  This has allowed me to move to an endocrinologist.  I also have high levels of reverse T3.

So far I feel like a complete lab rat.  I have now done 2 salivary Cortisol tests and have another urine test this week.  One of the 2 saliva tests came back very high.  My doctor said we have to do yet another saliva test to test the last results.  After all of this we will do a dex suppression test.   

At this point I am very depressed that I am unable to live my life.  Riding is not an option because I just get “floppy” and risk falling off.  I was studying to get my vet tech license, but the brain fog prevents me from remembering anything I read.  

I am so lucky to have a doctor that believes my symptoms are real.  She does not gloss over the fact that it may take a long to diagnose what is going on, but she wants answers as much as I do.  For now, I am just a good lab rat.

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Stephanie (Steph), Undiagnosed Bio

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undiagnosed2

Hi. My name Steph, and this has been a long journey for me so far, and I see a long road ahead. Hopefully their will be a rainbow once all these clouds have melted away.

I just turned 33 years old (this month) and have been dealing with symptoms of Cushing’s since I was a pre-teen without even knowing it. I was diagnosed (or possibly mis-diagnosed) with PCOS when I was about 11. That’s when the irregular (to almost non-existent) menstrual cycles, hirutism (chin, upper lip, upper and lower thighs, fingers, toes, basically everywhere) and weight problems began. I was immediately put on birth control to regulate my periods, which only made my life a living nightmare. They forced on a fake (non-ovulating) period and made my moods a disaster. I went on to be on birth control until from the age of 11 until about 3 years ago when I just couldn’t take it anymore, and took myself off. I’ve been using herbal supplements for menstrual regulalation since then, and feel MUCH better.

Over the years I’ve always felt like there was something “more than PCOS” wrong with me. From the extreme inability to lose weight normally, and the ease to gain it, to the weak legs, vitamen d insuffeciency, high cholesterol, high blood pressure, extreme irritability, now non-existent cycle, shortness of breath (just from walking up 1 flight of stairs), slow healing, hoarse voice, high testosterone, male pattern baldness, blurry vision, EXTREME brain fog etc….. It has been very, very, very tough and emotional over the years. It has taken a toll on my personality, emotions, and those around me….

The way that I found out about cushing’s is rather unique. I was on a popular PCOS message board site called “soul cysters”, and I have always been EXTREMELY self conscience of my round puffy face, and was wondering if it could be a side effect of PCOS. So I searched Puffy face on the message board to see if others on the board had experienced it, and sure enough Cushing’s came up, and a suprising number of women either had both (cushing’s and PCOS) or had been mis-diagnosed, which apparently is very common with cushing’s. it was like a gigantic light bulb went off in my head when I started googling cushings symptoms. All these things that I have been experiencing almost my entire life started coming together. I’m really not crazy!! Everything is possibly related. Im almost 100% sure that this is it!!! I don’t know if this is a good or bad thing, as I see that cushing’s is curable in most cases, but it is also scary, and diagnosing it seems like hell!!

I have began my -already slow- journey to diagnosis. And, the the Dr.’s don’t seem to be all that well informed. However, I am DETERMINED. I am excited at the thought of possibly being able to get my life back through surgery or meds. I went to a well respected Endo in my area, and she is gonna test all of my hormones, including my cortisol level. Though she didn’t seem to be too informed on Cushing’s when I brought it up, along with my “dead ringer” symptoms. I’m going to a pulmonologist on the 29th as suggested by my GP (who also thinks I have cushings, but admits he’s not well informed enough or equipped to diagnose). I’m also going to an OBGYN soon (tried going to one today, and had to walk out because it was such a bad experience). But I am determined to get 2nd, 3rd, and however many opinions are needed until I am satisfied.

Also, on a side note, possibly having cushing’s, along with having PCOS, has made me look at the doctors and the medical profession as a whole in a different light. I feel like if you find a genuinely good doctor who listens, cares, takes you seriously, and is willing to test you without question, and work with you, your levels, and your symptoms, you are blessed!! I have had so many doctors try to push meds down my throat (for their own pockets/greed obviously) when it wasn’t needed or necessary without hesitation or question. And, then when I tell them that the medicine is affecting me adversely, they just tell me to keep taking it! It’s sad and ridiculous. I’ve had to learn to do my own research, know my own body well, and trust my own judgement…..

I will be praying for myself and everyone on this message board who has had to deal with this horrific symptoms over the years.

Updates coming…..

interview

Stephanie was our guest in an interview on BlogTalk Radio  Wednesday, April 29 at 6:00 PM eastern.

The archived interview is available now through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you’re waiting, there are currently 82 other past interviews to listen to!

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Britney (PandaBearHobbit), Undiagnosed BIo

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I’m a 25 year old who’s in the middle of being tested for Cushing’s.

I have very high anxiety, hirsutism, fatigue, muscle weakness, can’t lose weight, acne, irregular periods, very high testosterone (163, normal is below 79 for women), always thirsty & pee often, ect.  My doctor referred me to an endocrinologist, and I was diagnosed with PCOS.  My cortisol levels were never tested.  I was put on birth control & metformin and the doctors told me that would help with everything.

After being on these medications for two years and seeing little to no improvement I started to do my own research.  I went to my endocrinologist and brought up the possibility of Cushing’s.  She assured me that it is too rare and I am fine.  I would’ve just taken her word for it, because I figured she knew what she was talking about, but my wonderful husband pushed for us to go ahead and do the tests.  I’m SO glad that he did.  All of the many, many tests have come back abnormal.  I’ve never had so many blood, urine, & saliva tests in my life!  After months of testing, my doctor said that Cushing’s is looking more and more likely.

I struggle immensly with weight loss.  My mother is a personal trainer and has always been in amazing shape.  She & the rest of my family told me I wasn’t doing enough to lose weight.  At one point I was working out 4 hrs EVERY DAY at the gym in addition to having a very physically demanding job.  I was able to lose a couple pounds, but that was it.  I eat healthy, and I’m not just saying that… I really do!  haha!  I’m a vegetarian, eat loads of fresh fruit & veggies, & try to keep my caloric intake to about 1500 calories a day!  I recently found information that a lot of exercising can actually raise my cortisol levels, which are already high.  So, I’ve taken my workouts down to brisk walking for 30-45 min.  Which, after years of intense working out, is weird for me.  I have never been able to lose weight on my belly and face.

I really struggle with anxiety & Irritability, and I hate it.  I get anxious about everything and it drives me crazy.  I compete in dog agility & get so anxious before & after I go into the ring that my pulse is over 180 & I shake (Just while I’m standing there!).  I love the sport so much, though, that I’d never give it up!  My dogs are my life!  I want to be able to compete & be able to enjoy it more, without all the intense anxiety!  I lack emotional control at times, and it tears me up.  I am a very loving person, and hate putting my loved ones through that.  When I lose my temper, I can’t control myself.  Once I come down from it, I feel aweful & can’t believe the things I said or did.  I feel like a crazy person!

I often have mental fogginess & insomnia as well.  Trying to focus on something is difficult, which made college a real struggle.  It’s not rare for me to go through patterns of insomnia, where I can only sleep a few hours a night.

Hoping to get officially diagnosed soon, so I can move forward with treatment.  I’m so eager to get all this figured out and feel “normal” again!

~~~

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ORKitty, Pituitary Bio

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Another Golden Oldie, this bio was originally posted 01/22/2008

Hi, I’m ORKitty. I live in Portland, OR, with my wonderful husband and kitty. I just turned 50 in 2005.

I began this journey quite possibly 17 years ago when I had some isolated panic attacks and then suddenly had panic 24 hours a day. I also kept crying and didn’t know why. I was eventually put on Xanax and then found a psychiatrist who put me on the anti-depressant imipramine and weaned me off the Xanax. It worked well for both the panic and depression for about 10 years. I gained some weight which I attributed to the anti-depressant. During this time I was still able to work and ran my own home-based business for 3 years. About seven years ago my anxiety worsened and my psychiatrist added Klonopin to deal with it. About this time I began gaining even more weight.

Due to a terrible (and terrifying) experience with a doctor, I developed a real phobia about seeing doctors. I managed to overcome this in early 2003 and have a large lump on my neck examined. An ultrasound showed normal tissue, but while I was there the doctor took my blood pressure at 160/100 and then decided to do an EKG. She found an abnormality and sent me to a cardiologist who diagnosed me with severe cardiomyopathy (next step dead). I was put on medication and had regular echocardiograms every few months and each one showed more improvement.

In fall of 2003 I was diagnosed with hypothyroidism and began taking Levoxyl, increasing by very small doses because it seemed to increase my anxiety every time I upped the dose. At the same time I was taken off the imipramine because there was some concern that it may have contributed to my heart problems. As my thyroid meds increased I began to lose weight and began having serious digestive problems including constant diarrhea. I had burning sensations in both arms, edema in both legs and my periods stopped. After some misdiagnoses and some doctor abuse I was finally found to have gallstones and had my gallbladder removed in April of 2004. I had hoped this would clear up the digestive issues, but that wasn’t the case.

After the surgery I noticed that my depression was getting much worse. By July I found that I couldn’t stand to listen to music or watch TV without getting anxious and upset. I was also feeling like I was in a fog and had racing, looping thoughts. I had trouble with reasoning and memory. My psychiatrist began prescribing a variety of medications, none of which seemed to help any of my symptoms. Things were so bad that I became suicidal for the first time in my life.

I finally persuaded my doctor to do a CAT scan to see what was wrong with my digestive system. Nothing showed up there but they found a uterine/ovarian mass and an adrenal adenoma. My doctor didn’t tell me about the adenoma until a later visit when she mentioned it in passing, saying it was nothing to worry about.

Oregon Health Sciences University.

Oregon Health Sciences University. (Photo credit: Wikipedia)

That was when I saw my first endocrinologist hoping to get help with my thyroid and an explanation of what was going on with my adrenal gland. He did a 24-hr. urine collection and my cortisol was high (200). He did an 8mg Dex test and I didn’t suppress completely so he sent me to Dr. Cook at OHSU who did a CRH/Dex test. The results were somewhat ambiguous, but he decided that the most likely source was the adrenal adenoma and recommended having the gland removed. I had that surgery in December of 2004. The day of the surgery I developed phlebitis in my right arm starting at the site of the IV. My arm became red and swollen from wrist to shoulder and all the superficial veins in that arm clotted up and disappeared. Ten months later I still can’t have blood drawn from that arm.

In the months after my surgery my heart went back to normal and my cholesterol and blood pressure improved, my periods came back and the burning sensations lessened. My legs were still swollen and suddenly became very red and hot. Doctors suggested it might be cellulitis or vasculitis. After 10 days of antibiotics the redness went away and a few months later the edema did, too. An ultrasound of my legs showed a thickened vein in my right leg that suggested there might have previously been a blood clot there. The mental fog slowly improved but I’m still not back to where I was. The anxiety and depression did not improve and have even gotten worse.

I planned to have the uterine mass removed after the adrenal surgery. This would be a total hysterectomy and my surgeon feels that my blood clotting problems need to be treated before the surgery. He is 99% certain that it is not cancerous since it hasn’t changed in over a year so I have the option of having the surgery when and if I choose. Of course there is a very slight chance that this mass could be the ACTH source.

Dr. Cook wants to do the IPSS before the MRI of my pituitary but this clotting problem needs to be dealt with before we stick 3-foot catheters in my veins. Plus I am running out of arm veins for the IVs.

Right now I’m waiting for my doctors to decide how to deal with this clotting problem before I can get the IPSS done.

I had a follow-up visit with Dr. Cook in September of 2005 and he ran all the tests again including the CRH/Dex. Since we thought the adrenalectomy had cured the problem, we were both surprised when my ACTH did not suppress. Dr. Cook wants to do an IPSS to see if the source is ectopic or pituitary. As I mentioned above, there is a slight chance that the growth on my uterus and right ovary could be the source of the ACTH. Neither my Gyn surgeon nor Dr. Cook feel that this is very likely, but it does make having the IPSS even more important than it would normally be.

Adrienne, Steroid-Induced Bio

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Another Golden Oldie.  The last update Adrienne submitted was October 7, 2005.

~~

I recently wrote this and thought it is pretty good for a bio as it explains the diffrent types of diagnoses and problems I have, and not just Cushing’s. I can get very technical in my writing but this is not. Somehow, I find enough brain power to write; and since it’s been so long since I was first diagnosed with Cushing’s, I do know a lot of meds, etc. And kidneys. Ha. Always happy to help see email at bottom. Thank you MaryO!

I. In the Beginning

I’ve fought against this for so long that now, at the precipice of acceptance, I am reluctant even to write the words that are playing havoc with my mind. Three words, or one if you prefer the modern version- well, in a minute. I can’t say them yet.

Asthma before-after

Asthma before-after (Photo credit: Wikipedia)

For the past eleven years I have been dealing with the mental effects of my illness. The illness and mental manifestations began as soon as I ingested my first corticosteroid pill while living in Indiana in 1994. Given to me for severe ‘adult onset asthma’ the steroids were the result of many emergency room visits, failed ‘breathing treatments’ for said asthma, and most probably the doctor’s unwillingness to be ‘bothered’ with such a common ailment as asthma and as such not inclined to research my symptoms further. I had never had any signs or symptoms of asthma in my 22 years of active living. I loved hiking, tennis, volleyball, basketball, you name it, I most probably did it at least once.

During this time of breathlessness and pain from breaking two ribs while violently coughing, I became severely depressed. I didn’t recognize it at the time, at least not until the asthmatic symptoms receded (due to the steroids or simply time, I do not know). I had been working three jobs for the holidays, one more than usual. I was a typical workaholic in low-paying dead-end jobs as was fitting my age and lack of degreed education. I quit all three jobs, hoping to move out of state to stay with my father for a while. I wanted a change, I was still on the steroids, was still sick and growing increasingly scared. I didn’t want to move back home to my mother in California: I felt she had had enough of me and deserved a break.

With my truck packed and my three jobs no longer a worry, I was all set to leave. I was looking forward to getting to know my father better. But the night before I was to leave, my stepmother called and said it just wasn’t a good time to come stay with them. My father had broken his ankle and was undergoing extensive surgery and therapy; but all I wanted was to be with him. I was not just discouraged from visiting, but was told in no uncertain terms that I was not welcome ‘at this time.’ I was devastated.

I moved in with a friend and I just lost it. I stayed for days on end in my bedroom, my only companion my cat, Fantine. When I wasn’t sleeping, I was writing feverishly on my old Brother word processor. I wrote the most horrible things- stupid stories, neurotic thoughts and poems. There was no internet for me at the time; no way to research information on my symptoms and medications but for the public library, which I didn’t even consider visiting as it involved leaving my bedroom. I even answered some personals and went out on two dates- something I would never normally have done. What a disaster! So much for going out… I became even more solitary.

It’s important here to note that I was once considered quite stable. Unlucky in love and a poor judge of men in general, still, I was happy on a day-to-day basis. I smiled at everyone, I laughed– I mean really laughed– regularly. I was considered ‘bubbly’ if not downright ‘giggly.’ In fact, ‘Giggles’ was my nickname! I had nearly forgotten that. I always saw the positives in any given situation, I never was depressed or sad. Well, almost never. I really enjoyed living; I got up each day with a can-do attitude. I cheered up those around me and was the optimistic one in my family as well as among my friends.

Those three words… nope. Forget it. I’m not even close to being able to write them here. Not yet.

Back to Indiana, where each day seemed bleaker and more hopeless than the one before. I broke out in hives on my face, upper arms, neck and chest. The hives stayed for eight years. Each day I tried to go without my steroid pill; and each day I went a little bit crazier. A little bit more depressed. A great yawning chasm seemed to exist between me and the rest of the population. My friends were worried about me, but not really worried enough to intervene as they didn’t really care about me. All they could see was that I was no fun anymore. Pity.

I stopped going to nightclubs which I once enjoyed. I lived on macaroni and cheese and soup from a can, barely eating enough to survive and always when my roommates were out of the house. I began to take more steroids to combat the hives, as were prescribed by doctors, never knowing that they were slowly killing me. The depression was so severe that if my roommates were in the house, I would urinate into a cup and keep it in my closet to dump out once they left. And at the time, it didn’t really seem crazy to me!

My image of myself really took a nosedive; my hives were hideous. I had always been complimented on my flawless complexion. I tried everything the doctors gave me, never thinking that the cure was so much worse than the symptoms. I was suddenly gaining weight, yet I honestly was eating less than I had before these symptoms began. I just figured that since I was no longer exercising the weight gain was to be expected. My hair had always been wavy and full of bounce, but it started to get curly- really curly. In the span of two months, I no longer recognized myself in the mirror. I remember removing the mirror from my room and never bothering to approach the one in the bathroom.

I eventually took a job with a do-it-yourself warehouse as a head cashier. I had to pay for the new truck I had and my roommates were the most fiscally irresponsible people I have ever known, so I had to earn a living. Unfortunately, I was too far behind to ever get ahead and knew that I needed to go home to my mother because I was just getting sicker. I had no energy, I slept whenever I wasn’t at work. I was having trouble concentrating, had problems with coworkers as I was a bit- how shall I say- ‘pissy.’ Conversely, I would break into tears for no reason. But the day I was to drive back to California, my truck was repossessed. I booked a flight, packaged up my boxes for cargo shipment, and was gone within a week.

What followed were two years of emergency room visits for ailments I had no previous experience with. I was gaining weight still, I had hives, headaches and such a deep sadness I didn’t know what to do, where to turn. So, I just continued on the path of work. Work had always seen me through the day; work took up the hours, made me feel needed and like a responsible citizen. Through it all, I continued to take the steroids, eventually upping the dosage according to how I felt each day.

The better jobs I landed, the better medical insurance and more willing I was to submit to seeing specialists. I had been misdiagnosed as having SLE (Systemic Lupus Erythematosus); FMS (Fibromyalgia Myofacial Pain Syndrome); and being just plain old crazy. My symptoms were starting to range quite literally in the dozens, and the list only grew as the years passed. (I was going to post it but chickened out- it’s mind-boggling, even to me).

Back to those three words. Nope, still can’t say them. Maybe tomorrow, when I shall continue my self-indulgent pity party. No, it isn’t even that: I’m trying to get to the heart of the matter but I’m taking the scenic route

II. Cute Professors and Straight Jackets

So, how about those three little words- am I any closer to disclosing them today? Maybe a little; I’ve thought of nothing else really. But for now, where was I?

I re-enrolled in college. A poor high school student, I excelled in college and enjoyed it immensely; especially the literature courses. There was this one professor too… ah never mind; this isn’t about him [giggles]. So, as of 1996 I was taking fifteen semester units of college coursework, working at least forty hours a week, and still trying to figure out what was wrong with my body. Then, the humdinger of all symptoms began worming its way insidiously into my life- the dreaded ‘uncharacteristic rage’.

It started out as simply ‘flying off the handle’ at the little annoyances in life but was so uncharacteristic of my personality that my family noticed. In fact, I was fired from a job due to this anger of mine. Sure, it wasn’t something that was said but I stayed on, daring them to fire me when I knew my position was not working out. I wasn’t working out. I saw a doctor, not a shrink mind you, just a normal primary care physician. He prescribed an anti-depressant, and even though I no longer felt crushingly depressed but angry he said it would help. And the medication did help; I was grateful for it because I hadn’t known such an angry existence since my marriage, and it scared me.

Who was I? What is happening to me? I didn’t have the answers, but I refused to give up looking for them. So, I continued my search for an accurate diagnosis by seeing all manner of specialists, and still no one knew what was wrong with me. The tests were getting too invasive and painful to be so well tolerated; I was losing hope. In fact, I think I gave up just a bit at this time; pushed it all away to a dark corner where I couldn’t see it staring me in the face.

Time passed in much the same way until the year 2000. I was firmly ensconced in a position of great authority (well not really- I was a high level secretary) at an ivy league college (yes, really). I loved this job! I finally had a position with very low stress, wonderful coworkers and a great boss. I had the perks that most people wished they had (free tea and goodies every afternoon, retreats to fabulous places, freedom to come and go as I pleased, all the time off I needed for appointments, and a helluva benefit package from day one). I ADORED the professors I worked with on a daily basis. The intelligence and wit of the staff, faculty and students was refreshing and really allowed me to be myself. I even got opportunities to edit books from the professors, something I considered to be extremely fun. And the money was the same amount I was getting practically running my former city’s IT department (my manager had a problem showing up to work and the ‘sys admin’s’ weren’t too brilliant on the day-to-day operations of the department, as you can imagine).

However happy at work I was, I continued to gain more weight. I was a little bit horrified and determined to exercise- and so I did. Rather, I tried. Everything. And nothing worked. Not only did I not lose weight when I should have, I was again out of breath. I had to use the elevators on campus, which was terribly embarrassing as most people on campus were young, fit kids (not to mention professors ) and I couldn’t even make a delivery to a symposium without frequent stops to catch my breath. By this time, I had a nurse who was frantically testing me for any and all ailments she could think of; she cared but still, nothing clicked. I was on about 15mgs of Prednisone then. Prednisone is the corticosteroid I was given; the one that still unbeknownst to me was killing me. Slowly.

Bet ya didn’t know I was half dead. Okay so it only thought it was going to kill me. Personalization of inanimate objects hmmm [scratches her head] uh-oh call in the cuties with the straight jackets if you must, but this is how I deal.

I’m really getting closer to uttering those three words… I really am.

III. He Didn’t MEAN to Forget Me

Now I want to shout the three words from a mountain top; I am tired of skipping around and through them. But I must bring this to the current day before I can do that, or those three words simply won’t mean anything.

My health came to a crises point, as such things eventually will, just four months into my wonderful job with cute professors and tantalizing bennies. For two months I had been in and out of emergency rooms, even going so far as to switch health insurance plans to try to get some decent care. It was said I had pyelonephritis, just a fancy word for a kidney infection. My kidney hurt so much, but I was used to such agonizing pain and continued to work while taking all the antibiotics I was given faithfully.

Soon the nausea, fevers and other signs of severe infection caught up with me and I went to the emergency room again, this time receiving an injection of a new, very strong antibiotic. The wanted to admit me but I refused. It wasn’t until the following week, about two months into the infection, that I allowed myself to be admitted. I knew it wouldn’t be fun and the tests were bound to be extensive because I only have one kidney. Yes, I had a congenital birth defect of extra tissue growth in my right ureter, the tube that drains to the bladder. I suffered through the pain of a diseased right kidney until, pregnant and in increasing pain at the age of sixteen, I was properly diagnosed and scheduled for surgery- but only three months after my daughter was born. That was fifteen years ago.

Nuclear imaging tests proved to be inconclusive, and no one knew what was causing such pain and infection in my remaining left kidney. A specialist was brought in from another hospital to assist the puzzled internists treating me. In the meantime, I was undergoing serious personality changes. I was angry, often belligerent and on so many medications for pain that I figured I just wasn’t myself. I was eventually given morphine, but it scared me because it didn’t work. Nothing would stop the pain.

I felt like I had ants crawling all over my skin; my thoughts were seriously disjointed, more so than would be expected with the medications. My family was scared of me, and for me. My doctor said there was nothing wrong with me, I was given every test in their charts and my kidney was fine- it was just a bad infection. But the medical history of my past was impossible for him to grasp, and he refused to consider that anything other than depression, weight gain and a kidney infection were present. He was only angering me to the point of boiling rage, so I completely ignored him as my mother fought for me. Apathy was my middle name, as I retreated to my own internal hell.

I hadn’t slept for than four days when my neighbor decided to play with my mind. At least, that’s what I thought at the time. Suffice it to say that after the Urologist specialist told me he couldn’t find anything seriously wrong with my kidney (but that he was concerned about my overall health), my mother bundled me up and despite my protests had me discharged. I wanted to stay and fight with the gang-banging girl next door. She woke me up from my first sound sleep in over four days! I was ready to kill her.

What had occurred while I was in the hospital was later revealed to me as an adrenal crises. In addition to that, I had a psychosis brought on by the adrenal crises, and a severe allergic reaction to the anti-nauseants used to keep me from damaging my kidney by throwing up so violently. It was also thought that my immune system was very weak from the years of taking corticosteroids (did you know they are used to shut down the immune system in transplant patients to prevent rejection?) At the time, I was truly as clueless as everyone else.

I went back to work for three days and it was obvious to everyone I wouldn’t be able to work until a proper diagnoses was found. I was exhausted; I had zero energy. My head was so fuzzy it felt like I was underwater, trying to do my job which was normally easy, yet suddenly seemed impossible. I couldn’t remember names, details, phone numbers even. I remember picking up the phone to call home and not knowing what the number was. They put me on temporary disability. Unbeknownst to me, I had the primo of disability plans and was to all concerned considered a professor, even though I was only a secretary! I was really too out of it to notice at the time how very lucky I was to have worked for such a generous establishment.

I continued to seek answers. I wasn’t given much choice in the matter because in order to continue to receive my benefits I had to be labeled disabled every two weeks. Oh the mountains of red tape I went through! On a return appointment to the internist who saw me in the hospital, I reached an all-time low. This doctor, one who is supposed to help or certainly to ‘do no harm’ said just one sentence to me, but it was a doozie. He said, “You have only to look in a mirror to see where your problems lie.” I wrote him a nice two page letter (faxed of course, then mailed) telling him exactly what I thought of his advice. He was so fired he was nothing but charcoal when I had finished with him.

But those words put me into such a deep, dark place; a place where only fears reigned, a place that I now consider to be the true hell. I was left without hope. I just felt useless. I had to give up my job, my beautiful apartment that I had worked so hard for, my freedom all but gone as I moved in with my mother. I was, oh, twenty-eight (I think).

With my mother’s help, I finally got an accurate diagnosis: Cushing’s Syndrome, exogenous. Such a rare disorder it is said only two in one million people in the world are diagnosed with it each year. All those lovely corticosteroid pills I was taking had caused my cortisol levels to be so incredibly high that my body’s endocrine system was shut down. Cortisol is essentially adrenalin, and without it the body cannot live. But too much of it and it shuts down the adrenal glands (remember, I only have one anyway as the other was removed with my right kidney many years ago).

This massively high amount of cortisol causes the body to be completely unable to regulate its own metabolism; resulting in excess weight gain, high blood pressure, diabetes and other such wonderfully fun symptoms that I’ll not continue to bore you with the details. Bottom line was, this was not my fault. Back in 2000 when I was diagnosed, the endocrinologist I was referred to ‘just to rule out an endocrine problem’ took one look at me and said, ‘You have Cushing’s syndrome.’ He said we’d do more testing to be sure, but I was a ‘classic case’ and need look no further to the answers I had sought since 1994.

But ah this wonderful doctor whom I adored made a very bad, bad mistake. This doctor put me on the corticosteroid dexamethasone to see if my adrenal gland would suppress the drug. But the drug ‘dex’ as we call it is five times as potent as the steroid I was already taking, prednisone; and he, uh, forgot to take me off the drug. The test is only ever run for a maximum of two days. In addition, the test should only be used for other forms of Cushing’s (like those that have brain tumors and adrenal gland tumors) and not for exogenous, or steroid-taking Cushing’s such as I have. I was on this highly potent drug for two months and it was killing whatever endocrine system I had left. It was later found out that the doctor was on loan from another hospital, and his mistake just caused me to receive an updated diagnoses- from exogenous Cushing’s to iatrogenic or ‘doctor caused’ Cushing’s. It is thought that without this mishap I would have recovered normally from the illness through the timely and slow withdrawal of the corticosteroids. As it was, it nearly killed me.

During this time, I was unable to sleep for more than one hour at a time, and for a maximum of three hours a day. This lasted for three months straight. Hard to believe isn’t it? Such sleep deprivation was not allowing me to recover. I was in constant pain from the extreme edema (swelling from water retention) that I was on painkillers around the clock. I gained a total of one hundred pounds in two month’s time; without overeating! I developed a hallmark symptom of Cushing’s: deep, purple colored stretch marks known as straie. The scars from this straie will always be with me. They are like potholes in my once smooth skin. The skin itself is thinned, like that of an older person.

Yes, I considered suing the hospital and the doctor that had complicated an already bad situation. Quite frankly, I just didn’t have the heart or the energy to do anything about it. Besides, he didn’t mean to forget about me. Right? Right. Too bad I didn’t know then what I know now.

I couldn’t get up from my bed because I wasn’t used to being big as a house, so I spent all my time on the living room couch. During my time on the couch, as I like to refer to it, I considered suicide. I had to rethink that as it completely went against all I knew and believed in, religion wise. It wouldn’t have been a nice thing to do to my mom either, the only one who always believed in me and was always there. Through the pain, through all the tears, she was there. She’s still there for me, every single day. My father helped me a lot in this as he too knew such extreme pain.

But this life wasn’t all it was cracked up to be if it could take a healthy, normal girl, and turn her into a decrepit old woman before the age of thirty. Right? I mean, what kind of justice is there in that? They even gave me a wheelchair and a cane when the steroids ate through the ball joints of my hips. Of course, I refused to use them. I still won’t. So, I had to find that justice; figure out why I got this illness, what I had to learn from it, so I could move on with living. This isn’t living you know- it’s existing. Surviving.

So, I withdrew into my mind to search for the answers. After all, I no longer had work to fill the hours with. I had to find something to do. I became obsessed with reasoning out my illness and my continued existence. I mean, people younger than me were dying from Cushing’s. Mother with four kids, kids… just people dying from something I had, too. It was and is such a sad motivator to live. I thought my past pain and subsequent healing from the removal of my right kidney was sufficient for one person to go through, but I realized I was wrong. So wrong.

Maybe now those three words have retreated just a bit; further into the back of my mind where they are safer for not having been spoken this day. A dear friend told me today that people would be touched by my writing this series. I don’t know about that, but I hope so. I think it’s pretty obvious I’m doing this for me but God knows I’m not the only one who can understand such soul angst. Through different reasons, and many seasons, we all remain able to learn from the hell that life can sometimes be. But then, this isn’t about my physical health, it’s about those three damned words.

IV. Revealed: Three Blasted Words

I spoke those three blasted words to someone very dear to me today. He wasn’t surprised; why did I expect him to be? I’m glad though. It was a hurdle; but on to the story.

Since first being diagnosed in 2000, I’ve been through a lot of changes. I have ‘latched’ onto people that have proven to be untrustworthy. Yes, I did that before but not to such an extent. I seem to lack the judgment I once had, unable to build it further as would befit my age. I haven’t ‘grown’ in ways I believe I would have without Cushing’s. See, I think the Cushing’s has tripped a wire in my brain- and I’ve no idea how to fix it. If I can. Or, if it will happen magically when I am well, or at least completely detoxed from the steroids.

Steroids are known to change the chemistry in the brain. They eat healthy brain cells, much as, say, marijuana will; hence the medically recognized states of confusion, memory loss and lack of concentration and cognitive abilities. If a ‘Cushie’ (which is what we Cushing’s patients refer to ourselves as, and consider an endearment) is in adrenal crises, psychosis can be present, and a confused state is the norm. An adrenal crises occurs when there is a sudden ‘dip’ of cortisol in the body, usually from a stressful event as the cushie body cannot distinguish from good and bad stress, and the body is not able to secrete hormones accordingly.

But this fascination with the inner workings of my mind is new to me. Not that I only just started looking within for answers without, but that I am aware of it. Aware that is isn’t quite… normal. I dismissed the doctors who once said it was ‘all in my head’ with good reason; it isn’t all in my head, it is real, this Cushing’s. But there’s more to it than that. This brings me to those three blasted words. Well, I really shouldn’t rush at this point. They’re coming no matter what (like a Mack truck head-on, more like).

Ah, what the hell they’re only words: ‘Manic Depressive Disorder’. ‘MDD’. Or, the one-worded definition ‘Bi-polar’. There. I said them. I’m crazy, in a way. Extreme highs and extreme lows: who would have ever thought what I’ve been feeling isn’t normal? Not I. It isn’t as easy as taking a pill to regulate the moods of this thing, because they don’t always work. I have no medical insurance. Still, I have found a good psychiatrist and shall pay to be labeled with this… this… ‘MDD’; because I can’t not be treated, now that I’m aware of it. I have to try to get better; try to be able to function on a more even keel. If not for myself, then for those who care about me!

I just never considered this. I always thought I was oh, you know, obsessive a little bit, compulsive a lot, and more introspective than most as my illness and solitary life demanded. But the evidence is conclusive, at least to me. My mind is not helping my health; such extreme highs and lows bring about their own stress, and my body already cannot function well without regulating good and bad stress on a daily basis. But I do know that I won’t continue to treat this as something that will one day go away; I need to be courageous in the face of such adversity and just deal with it. Being open about it is, I think, the first step. Perhaps, hopefully even, the hardest step.

And, so I am open. This… this angst-ridden pity-party writing is how I deal.

What else did you think the three words would be? [smiles]

AND, a little word [ha ha] about my struggle for Social Security:

Well I had my social security appeals hearing on July 15. So I think I can finally talk about it now. I first applied oh four years ago. I had to reapply two years ago or has it been three? Anyways. So I had been denied on paper four times to get to the hearing. I had appeared twice before the judge. Once, I wasn’t prepared and she said get an attorney. Second time, I had moved and lost my attorney so then I moved back she said go get an attorney I will reschedule you. So I did.

The attorney assured me she would get records that were more up to date. She did not do so. When asked if there was new information by the judge, she said no. Anyways, my diagnoses on paper are: Fibromyalgia (which I don’t have), Cushing’s Syndrome, Avascular Necrosis of both hips from steroids. Oh and glomolumerlonephritis something like that of the kidney. I don’t know if I have that, but my last doctor put it down on their paperwork.

So, the judge had an Endocrinologist on the phone to ‘consult’ her and had previously stated that he was only to help her understand the medical things, but that’s NOT how it turned out. I have never seen him before! He knows nothing of me. Her questions were really skewed. She was looking for documentation that doesn’t exist I mean COME ON I haven’t had medical insurance since 2002! How the HELL am I supposed to have MRI’s of the hips that are newer, xrays, all these tests do they THINK I’m made of money?

The endocrinologist wasn’t too bad. He said obvsiouly being given a dexamethasone suppression test for 4-8 weeks [I can no longer remember!!!] it had made my Cushing’s so severe and most of my problems could be attributed to it. He couldn’t at all understand how it happened but I told him- the doctor forgot about me and told me to keep taking the dex. I didn’t know any better. Then the doctor left the hospital, and left me.

He said according to my records my blood pressure was under control. Well it is NOW- I was hospitalized within the past year in CA and given emergency medicine to lower it as it was so out of control. How is THAT controlled? Oh but WAIT the records weren’t there that documented this. Wow- what a neat thing to find out.

My diabetes I should be on medicine for and I could go down on the steroids quicker, according to this doc who doesn’t know me. Huh? I only GET diabetes when I go down or up! Otherwise, giving me meds would only screw with the sugars. I cannot take their ferking Glucophage it makes my IBS off the charts no way, no how I’d rather inject insulin. I do think some injections when tapering might help but HOW I ask can I do THAT without medical supervison? I can’t. I’m not God!

He said I could work sedentary work. Ack ack ack! I told him of my extreme swelling but heck I guess if someone is dumb enough to hire my sorry ass then they could also give me an expensive fully padded ottoman like I have under my desk. To limit swelling. Not to mention that I’d have to call in sick about 99% of the time. Sure, I’m an employers DREAM.

But then he said I would have lifelong problems relating to the Cushing’s and steroid use. He doesn’t understand the kidney at all. The severe IBS is ‘controlled’ with Codeine even tho I told him nothing else works only codeine and I cannot take enough to control it really as it turns me into a zombie. Didn’t listen.

Said my hips when last tested were in stage I [thank GOD but that was 4 years ago!] and would likely progress as it usually does and I could expect lifelong operations. Like DUH, ya think?

But the whole problem was… the judge thought I have REFUSED to go down because I was using steroids like an addict. She asked the endocrinologist if anyone would use them recreationally AH HA HA HA! Maybe she thought I was using anabolic steroids? Yeah, I’m a jock all right. Sheeesh.

The Endocrinologist said with a giggle, “No. Can’t think of one person EVER wanting to take steroids.”

And my attorney? Basically, she said nothing. NOTHING. She hugged me at the end, and said she was sorry it didnt look good. Really? Ya think? I even spoke up for myself very respectfully and intelligently, but the bottom line is no one will listen to me; I’m only the patient.

I didn’t want their fliping money. I get a stipend until I’m 65 or no longer disabled from a private company. But NO ONE will insure me. I just wanted medical and dental. I need medical, I need dental. And I need a divorce. Erm nvm.

Appeal? HA HA HA I had to laugh at my attorney. Not with her sorry ass. She’s a nice lady folks but she doesn’t get paid unless I win. And I’m quite sure I did not, but will find out formally within ninety days. The evidence was what they wanted. I have had no doctor in my corner for two years. I have had to doctor myself.

All I can afford to buy are the main prescriptions I really need. Everything else… it just isn’t going to happen.

Ain’t life grand? It’s ok. I’ll get thru this. I want to go down now but I don’t want to get crazy in the head, or too exhuasted in the body before my sister comes down to visit me on 8/11. I’m looking forward to it.

How does anyone get disability without records??? I guess I could try on my newly diagnosed bipolarism. [shrugs]

UPDATE: I found an advocate. Waiting… to be formally denied. Current dosage: 20mgs. I went down. Yes! AND, I fixed my puter. Yay.

POEM: I’m a Fruggie Queen

I take big drugs and I can not lie
You normal people can’t define
The pain I got that makes me pop a pill cause I’m ill
Got codeine freaking me out
Dark dreams, blank stares and that ‘flat affect’
Cool for when I need to shut up
Talking everyone’s ears off
Normally ‘Speedy Gonzalez’
Stupid mouse doesn’t even do frugs
I mean drugs [eyes cross]

There’s serious frugs for days
Excruciating; pain unending. Stronger frugs
Endocet. Yeah
I take big drugs and I can not lie
How many druggies
Have fallen from doctor’s prescriptions
Fruggies I declare
Constantly cautioned for
Popping pills
But they’re so needed to drown out those

Normal people, un-frugged
Envious their vitamins
The only drugs they take, their bodies, minds, whole
My neurons forcing more
Drugs when I once needed none
Ability to function impaired
Big drugs can not lie; their purpose not evil
Lucky you, I see
Frugs really aren’t funny.
Oh well. I’m a fruggie queen, what did you expect?

POEM: Red Tape Kills

I exist on self-enforced life support, but I’m not dead.
Each day dutifully swallowing poisoned pills.
Heart and mind- basic functions- supported in this life not fully led.

Finding joy in once normal things, hopes for a life ahead.
Bottled dreams deaths only antidote, my anthem is still:
I exist on self-enforced life support, but I’m not dead.

The world whizzes past me, medicated.
So weakened, even fun is exhausting. Pain alone enough to feel
Heart and mind- basic functions- supported in this life not fully led.

Stubbornness saves me, as I will not dictate my life from Death’s bed.
Good intentions rarely enough for others to see what’s painfully real-
I exist on self-enforced life support, but I’m not dead.

Without insurance, there’s no doctor’s guidance, no caring if I live or die. Med-
students know nothing of my complexities- they simply write on my unpaid bill:
Heart and mind- basic functions- supported in this life not fully led.

Without my knowledge and persistence, my epitaph would read instead:
Here lies Adrienne- So young, such a shame. Left behind a hill of bills. Red tape kills.
I exist on self-enforced life support, but I’m not dead.
Heart and mind- basic functions- supported in this life not fully led.

I have TONS of writing, mostly about Cushing’s. If you’re interested, I am usually known under the following link at All Poetry:
http://allpoetry.com/AdrieWonky

Regular email addy is: fayrenysa-boards@yahoo.com

Update October 7, 2005

I have received a very basic health plan insurance through my state. It covers appointments and medications which is more than I’ve had these last three years, so I am happy. I do not know that it really covers hospitalization or many tests, but we shall see.

When I was at the urgent care for pneumonia last week, the doctor there told me where the nurse that I love is now practicing. He helped me get off a lot of medications that were hurting my kidney and since, I have been had fewer infections and almost no kidney pain. He quit his old practice I was seen at about one and a half years ago; I was never able to find him again.

Anyways, he opened up his own medical clinic complete with internist, and two other doctors. So, I called my disability worker and she told me to ask what plan the practice takes. So I called my nurse’s office and left a message to see what plan he accepts, and he called me RIGHT back. He was SO excited to hear from me. He said he’s been putting ads in the local newspapers in hopes I would find him (and other patients of his, of course). Knows the doctor I saw that gave me his card. He would love to treat me.

Told me to ask for the ‘family care’ plan so I called my disability worker back and I’m all setup (they just have to do the paperwork)!!! I made an appointment with my beloved nurse for 10/25/05. I cannot believe I get to go to a doctor and have meds again for nothing! Well, some are 3.00 and others are 2.00. And he knows Cushing’s of course and he looks forward to treating me. How… wonderful a feeling that is to hear. He is a nurse by choice; the practice is his. He has over 25 years in the medical field; we talk medications like two old friends. I’m so happy!

I change names often, so I will just update this as I can. My current website address link is: http://allpoetry.com/poets/Fix%20it%20Fae. I write there. Some funny, most sad. Lurkers welcome lol.

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