Home

Ren, Undiagnosed Bio

3 Comments

 

Hi there. 27 year old female, never had kids. It’s been an awfully long couple years and I’ve been researching and reading all you lovely people’s bios on pituitary tumours, Cushing’s disease and Acromegaly for about that long.

My symptoms onset at a time where my lifestyle was out of control. I was drinking heavily, using drugs and didn’t have a care in the world. Or so I thought. At the time of my heaviest use (cocaine) I started having strange laundry list of symptoms.

Pressure headaches
Pain in my abdomen
Acid Reflux
Excess hair growth (abdominal, face)
Purple stretch marks on my abdomen
Weight gain of approximately 30lbs in a month (distributed in only my trunk/abdomen)
Swelling of arms, face (around eyes too) sore jaw, enlarged tongue (ridges on the sides, from my teeth)
Swelling of hands, feet & legs (increased foot size from size 7 to 8)
Exhaustion
Hair loss on scalp
Itchy, sensitive skin that looks very thin (see-through almost, blue veins very prominent all over body) skin redness as well, large pores. Dull eyes.
Fatty deposit on the back of my neck
Collar bones no longer visible
Diagnosed with anxiety, bipolar disorder and ADHD
Memory loss, brain fog
Irregular menstrual cycles and increased pain
Tunnel vision at times and blurred vision. Sensitivity to sunlight.

At the time, I was so messed up my perception of reality was pretty skewed. The combination of my lifestyle and all the symptoms mentioned above motivated me to get clean (a year and a half so far woohoo!) I knew something was wrong and I needed to figure out my baseline without substance abuse to get to the bottom of it. At my lowest point I met up with my parents who I hadn’t seen in a month and they commented on how different I looked. One of my friends from narcotics anonymous hooked me up with a great physician as I didn’t have a family doctor. I was determined to get to the bottom of all this.

When meeting with my new family doctor (after getting sober) all of the focus was put onto my recovery and mental health. Seeing as she didn’t know me beforehand she didn’t know the petite, energetic person I used to be. I voiced my concern about my physical changes as well as my mental ones. I was referred to a psychologist. Diagnosed with bipolar disorder, depression and anxiety and prescribed meds for all of the above. The interesting thing is I didn’t have these problems before the physical symptoms onset. This was followed by countless ER visits for panic attacks, being dismissed countless times for strange physical symptoms that every medical professional attributed to my history of drug use and mental health. I believed them at the time. I was also diagnosed with TMJ disfunction and started seeing a chiropractor and massage therapist with no improvement.

The year that followed was the most challenging of my life. I thought I was going crazy. I tried eating an extremely healthy dairy free, wheat free, exercising constantly with no change. Seeing various doctors, explaining my symptoms only to get basic bloodwork done and sent on my way. It wasn’t until I decided to get off my psychiatric meds and focus on finding a diagnosis for my physical ailments that things started to change. I visited the ER and the doctor on call actually listened, he referred me to a rapid assessment internist. To date I have had a thyroid panel, hormone panel, all basic bloodwork, thyroid ultrasound, abdominal and pelvic ultrasound, cortisol 8am test, 24 hour urinary cortisol- all came back within normal range. I have been tested for angioedema, (neg) referred to an allergist, dermatologist and endocrinologist.

When I saw the endocrinologist he basically said “I see people with your symptoms all the time and there is never a diagnosis, so you’ll probably have to live with this” I was instantly worried and heartbroken with that response. He ordered some tests, ACTH, another 24 hour urine, T3 T4, DHEA-SO4. I’m waiting on these results now. Saw my internist again after the endocrinologist as he also ordered a prolactin and ACTH test which I hadn’t obtained the results from yet. ACTH was slightly elevated as well as prolactin. (High) not by very much. He ordered a CT scan of my head which I have to wait a month for (he said possible hyper prolactinoma of the pituitary). I’ve asked to have my growth hormone (IGF-1) levels checked, endo says “nope you don’t have Acromegaly”

I am trying to stay strong but I’m on the verge of losing home based my business as I’m a hairstylist and am starting to develop tremors in my hands, I can barely get up in the morning, I feel as though no one understands what I’m going through. I have a sense of urgency within me to find a diagnosis, my body is screaming at me that something is very wrong. My symptoms above increase in severity by the day. Have any of you diagnosed with Cushings out there experienced only slightly elevated ACTH results or prolatcin? I was also curious if anyone has an enlarged/ swollen tongue as a form an ACTH secreting tumour, I’ve tried to find information on it but only points to an acromegalic symptom. Something inside of me is telling me this is either pituitary or adrenal related. I can’t help but wonder if my drug use somehow stimulated my pituitary.

My personal life is non existent, I have isolated myself from my friends who no longer reach out or accept me (even though I have attempted to confide in them). I feel as though everyone but my family thinks I’m completely out to lunch. Just want to thank everyone on this site for sharing their stories, when I’m feeling hopeless and at a dead end, reading your bios are the only thing that is keeping me going and pushing for a diagnosis!

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Chelsea, Undiagnosed Bio

12 Comments

undiagnosed2

 

Hello Cushing’s world! My names is Chelsea. I’m 23, female and waiting for a possible Cushing’s diagnosis. I’m trying to see if anyone has a similar story to mine? I’ve had a hard time finding people in my age bracket with similar symptoms or test results.

Up until I was 21, I was 110 pounds soaking wet. I’m 5’3 and have always been extremely active. I was on the USTA junior tennis circuit for 15 years and then started coaching when I was in college. I also was always on a high protein, low card diet for the majority of my life.

I also went on birth control at age 13 and stayed on it until I was 20. The first 6 months off of birth control, I never had a period but I assumed it was normal after being on the pill for so long so I didn’t worry about it.

Then, about 3 and half years ago, roughly six months after I turned 20, I gained 45 pounds in a matter of 5 months. Completely unexplained when, at the time I was coaching a JV tennis team and in kickboxing class twice a week. Obviously I was utterly shocked and disappointed. I started trying to lose the weight. I cut down from 1500 calories a day to 1200 and amped up my cardio routine.

My period had come back, but I started noticing that it would always come about 8-10 days after I expected it to come. Again, I assumed my body was just getting back into the swing of things after going off the pill.

During all of this, it was time for my yearly physical with my GP. I went to the appointment, had weight and height taken, and was ready to discuss with him the weight problem I got in what seemed like overnight. After walking him through my diet and exercise routine and mentioning my period irregularity, he simply insinuated that I was probable a closet over eater and said “Just eat more celery”.

Still to this day I can not look at celery without my blood boiling. He also said that once I lose the weight, my periods will get normal. Ok. I’m 20 at the time and a little naïve in my thinking that, “he’s the doctor, he must be right”. So I pressed on in my quest to lose the weight. To no avail. Instead, every Wednesday when I stepped on the scale, it showed that I had gained a pound of two.

At this point I’m weighing in at 158. Not grossly overweight but also not a healthy BMI. I also started noticing that my once long, strong jaw line was turning into mush and seriously thought I needed a chin implant. Then I noticed that I was starting to oddly resemble a linebacker. The fat on my back between my shoulders came out of no where. I have worn a scarf almost every day since to hide it. I also noticed that, while the sleeves in my shirts were fitting fine, my pants were not buttoning and I could no longer wear my mid-drift bearing tops without looking at myself and crying.

The depression began to set in. I had been diagnosed with bipolar disorder at 18 due to boughts of depression followed by highly elevated mood, never quite reaching mania. Also, I was anxious 24/7. I never took antidepressants. Only a mild mood stabilizer and still do to this day. It is the only medication I’m on.

Back to age 20, the next thing I noticed was that I could no longer bear going to school, coaching tennis, and working part time. It was everything I could do to just get out of bed. My back ached, my knees ached, and I was not even recognizing myself in the mirror. As my mother puts it, I started looking like I was stung my a thousand bees rather than putting on weight.

It was about this time, age 21 that I had skin problems. So I went to the dermatologist who diagnosed me with mild eczema on my elbows and tops of my hands. But it hurt. I couldn’t and still can’t stand for my hands to come in contact with anything hotter than warm bath water.

It then came time for my annual gyno appointment. Again, I rehashed everything I had been feeling and noticing and again, I was told it was just “life stress” and to “learn to relax and work hard to lose the weight”. So again, I left feeling like it was all in my head. The next few months is when I started noticing that I was not functioning like I used to. The comment I often made to my mom was ” I just feel like I’m on autopilot all day. Everything seems so hazy.” She began thinking I may have a thyroid problem.

SO I made another appointment with my GP and brought her with me. He adamantly insisted it was in my head and would not order blood work. Again, I left feeling like this was all my fault. A few months later, I accepted a job after graduation and moved to Boston. This is when I first noticed the disgusting black mustache that had taken up residence above my upper lip. I began having to shave it every day and decided well this must have something to do with my period problem, that was still coming farther and farther apart every couple of cycles. Again, more weight gain.

Finally, I hired a personal trainer and nutritionist. I met with the trainer twice a week and the nutritionist once a week. I kept up with this regime for about 11 months. I lost a grand total of…… four pounds. I was defeated to say the least.

During those 10 months I noticed that my vision was so blurry. Every day all day, it was slightly fuzzy but there would be instances where it would get so bad, I could no longer read my phone. I had been diagnosed with refractive amblyopia when I was 5 ( a non-wandering lazy eye) but I had never had blurry vision before. I decided to find a GP in Boston and made an appointment.

I yet again, went through my whole list of symptoms that I had been gradually wracking up over the last two years and again, heard “you need to just try harder to get the weight off and then everything will go back to normal”. UGH. I thought by choosing a female doctor this time that I’d hear something at least a little more hopeful. But no.

A few months later, I took a job with a great company and relocated to Houston. It was this time last year and I had completely missed a period. 84 days with no period. I decided to get serious. I starting tracking my cycle and recording my weight. I met with another GP. Again, I heard, you need to lose the weight. I was done. I resolved that this must be how I was going to spend my life. Fat, achy, depressed, most probably infertile, and going through life in a haze. However, I kept tracking my periods just so I’d get an idea of when to expect them.

Then, in October of 2015, I accepted a dream promotion and relocated to Seattle. I had started having hot flashes in Houston but guessed that it had to just be that Texas heat. However, they continued in Seattle. I was still living life with the sense that maybe all people feel like me. Maybe all people have aches and pains and can’t muster up the energy to do tasks as simple and mundane as cleaning the coffee pot.

Then, I went home over Christmas where I experienced the three most awful hot flashes of my life. My whole body started tingling, I felt like I was being held up to a fire. I resolved then and there that when I got back to Seattle, I was making a gyno appointment and I was not going to leave that office until the doctor thoroughly listened to me and blood work was ordered. I had a “don’t take no for an answer attitude”.

Luckily, by God’s grace I presume, I didn’t need that attitude. My new gyno is now my hero. Immediately after I went through the last three years of my symptoms, he sent me for blood work. He was thinking PCOS or a thyroid problem. Maybe both. A week went by and I never heard from him. He had said he’d call in two days. Finally, after I called the office about 5 times, he called and said he was sorry to keep me in suspense but that he had never seen blood work like mine. He was expecting to see either my thyroid levels elevated or my testosterone/androgen elevate. Instead, those were all in normal range. What wasn’t in normal range was my moderately elevated Prolactin level and my “through the roof” DHEA level. He had consulted four other doctors who were all just as puzzled as he was and recommended he refer me to a medical endo.

In the meantime, I had made an appointment with a new GP. I went to that appointment two days after my gyno called with my test results. I didn’t mention that conversation with my new GP. I wanted to see what her opinion was when I presented her with my symptoms and test results. She too thought PCOS with symptoms but when she looked at my blood work said ” I have no idea but something is not right”. SCORE! I couldn’t have been happier.

After years of feeling crazy and lazy and defeated, I had validation that my body was working against me. She didn’t come out and say “I believe you have Cushing’s” but she did say “When you see the endo, please ask him about Cushing’s”. My guess is, she didn’t want to make that kind of diagnosis. I got my referral to endo and called to make the appointment, it’s for next week. And I found out my gyno had written “possible Cushing’s?” on my referral. So now I’m anxiously awaiting my endo consultation. His assistant called yesterday and asked why no one had order a pituitary MRI yet. I told her that these were the first two doctors out of 7 that I have seen in the past two years who ever even believed something was wrong. She decided we should do the consultation and go from there. Weird to say, but I really hope it is a cut and dry endocrine issue. Then I’d have a real answer. So now, I’m at 173 pounds, 5’3, (obese as I have been told by several non Seattle physicians), with stage 1 hypertension and a multitude of symptoms that I hope are all linked together.

If anyone has had a similar experience, please reach out. I know this is different for every patient but any kind of similarity will be welcomed while I anxiously await the endo appointment next week.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | CushieWiki

Jordiyn (Jordiyn), Undiagnosed Bio

Leave a comment

undiagnosed2

Hello my name is Jordiyn and i have not been definitively diagnosed with Cushing as of yet. Im not really quite sure where to start so ill start at the beginning.

At the age of 19 i started to notice that I was gaining weight very rapidly for no reason. I was very active and I weighed about 120 and then within about 6 months I gained 60 pounds. Then from there I started to gain more weight every month/year. All in all iv gain over 100 pounds in the last 4 years even though i eat pretty healthy and exercise.

With the excessive weight gain I started to notice these pinkish/purplish stretch marks on my hips, stomach,arms and thighs. Plus I gained a lot of weight in my face and my upper back. And then I started to notice that I was so tired and weak all the time.

I think the worst part has been the back pain and that I always feel like I need a nap even though I have a very hard time sleeping. My moods started to change dramatically. I get irritated very fast and I can just start crying and the most random things, I also have really bad anxiety so much so its crippling. My depression is threw the roof.

Last year in October I even tried to kill myself and then 4 months later I tried again. I do have Bipolar and i’m on medication but it feels like none of the medication are working. My psychiatrist just has no idea what is going on with me but he did tell me he thinks there’s something going on that doesn’t relate to my bipolar.

Then last year in October I stopped having my period and this lasted until june of this year so about 9 months. In those 9 months I gain 25 pounds, I literally thought that I was pregnant but every test was negative. After tons of tests and blood work It later turned out that I have PSOD. While I was at my Gynecologist he told me that I look like someone who has Cushing’s and that i needed to talking to my primary care doctor and talk to her about it.

So as of now im waiting for my doctor to send me to an Endocrinologist. I am very nervous that I have Cushing’s. Last year while I was doing some research about all out my symptoms Cushing’s popped up and so I talked with my old doctor about it and all she did was dismiss it. So after I couldn’t get any doctor to listen to me I gave up. Then a doctor finally says to me you may have it and i feel like it a sign from God telling me that I maybe i do have Cushing’s.

I would love to make some friends and actually have someone to talk to about this. Ill keep everyone updated and I’ll also post some pictures too.

I hope to hear from all of you soon.

Jordiyn

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Kim, Undiagnosed Bio

Leave a comment

golden-oldie

Hello, everyone. Below is information from my introduction at Cushings-Help.

“So, about me…I’ve had various non-specific symptoms since I was a child and various specific diagnoses as an adult … hypothyroid, fibromyalgia, adult ADD (misdiagnosed and treated as bipolar from 2005-2008), chronic atrophic gastritis and chronic duodenitis (diagnosed via biopsy), colon polyps, non-celiac gluten sensitivity, sinus polyps, insomnia alternating with hypersomnia (sometimes I sleep up to 15 hours a day), plus an REM sleep disorder (REM sleep latency 287 min/378.5 total sleep time, REM sleep 37.5 min with 12 upper airway resistance episodes during that time) … and the list goes on. I have multiple vitamin deficiencies too (C, D, zinc and iron) and other abnormal blood levels (low arginine and dopamine, and high folic acid, glutamine, glycine, norepinephrine and ornithine). The levels that made some people suspect Cushing’s (vs. PCOS) were my DHEA and Testosterone. My highest DHEA was 1342, lowest Free T is 0.2.

From a CT scan of my abdomen in August 2011, I know there’s a “probably benign” lesion on my liver, a cyst on my kidney (plus medullary sponge kidney), a 10 mm cyst on my ovary and an umbilical hernia. My PCP considers all of this normal. Also, I’ve had four fractures as an adult (two in 2008 alone, one that required surgery) partly because of poor balance and coordination (frequent trips and falls, dropping things, etc.). I was through an EEG and 24-hour EKG because I fainted and collapsed on the sidewalk outside of my kids’ school at the end of December 2011. Those tests were normal.

…In terms of my physical appearance, I don’t have stretch marks but the shape of my face changes almost daily. It’s been hard for me to piece together a visual timeline since I hate having my picture taken and therefore, steer clear of camera lenses. (NOTE: I did manage to put a timeline together…You can find it here. http://cushings.invisionzone.com/index.php?app=gallery&album=408) How sad is it that I have very few pics with my kids because the person I see in the mirror is a stranger! I don’t even resemble the person I once was…my weight just continues to creep up regardless of how little I eat or how much I exercise. The fatigue has gotten REALLY bad lately and my tolerance for any physical activity is gone. I have regular shortness of breath and my blood pressure and heart rates are all over the place. Just the thought of doing stairs to throw in a load of laundry is overwhelming. And after showering to get ready to go somewhere, the only place I’m ready to go is back to bed. I also have a small buffalo hump and my neck is very thick. 16″ necklaces that used to fit comfortably won’t even close now.”

January 30, 2012

Today I had an initial appt with an endo who ordered the following tests:

Gave blood today to measure:

UR/CS/CBC/FT4/T3RIA/TSH (have confirmed hypothyroid; TSH has been remaining high even on 125 mcg Synthroid)

GONAD #1

Thyroid Antibodies

Vitamin B12/Folate

IGF-1 (have two kids with GHD being treated, third child is being tested; endo suspects IGF-1 may come back low)

IGF-BP3

ACTH

Cortisol

Cardio CRP

DHEA (history of high DHEA … 554, 717, 1342)

Ferritin

Prolactin

Free Testosterone (history of low Free T)

Vitamin D, 25 (have confirmed Vitamin D deficiency, rechecking levels)

Vitamin B1

Vitamin B6

Vitamin C

Tuesday, January 31 having DEXA scan of spine, hips, and right wrist and ankle (have had multiple fractures on right side…cuboid (foot), anterior process (heel), elbow, wrist).

Thursday, February 3 having nerve conduction study because of peripheral neuropathy in hands and feet

Friday, February 4 meeting with opthamalogist for vision testing (peripheral vision is diminished, causing dizziness, balance issues, resulting in falls)

I’m waiting for endo’s order to have an MRI of the pituitary. Endo reviewing report from the CT scan I had in December 2011 after my fainting episode/collapes on the sidewalk outside my kids’ school. The report says nothing except there were not hemmorages, so anticipate order for MRI will be coming soon.

This seems like a lot of tests, but I think the endo wants to determine where to dig deeper. The nurse practitioner asked a lot of questions that led me to believe she may have been suspecting Cushing’s and/or growth hormone deficiency. And they were interested in a timeline I’d put together demonstrating my eight month experience on Ketoconazole, which allowed me to shed weight and caused an improvement of symptoms. (The weight went back up and symptoms flared off Keto as posted above.)

I guess I’m in a waiting pattern now as the endo pulls together the results of all these tests and decides which tests will be next. The only next test that was discussed was GH stim testing, again leading me to believe the endo may think he’ll uncover that issue, especially since I have two kids who are GHD. (My son also has smallish pituitary and chiari malformation and my daughter has a Rathke’s cleft cyst.) I know a lot of the standard Cushing’s tests are missing from the above list, but this is a starting point. I’ve never had such a full endocrine workup, so at least I’ll have a baseline.

I’ll post more about my journey as my test results start coming in.

HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Rashelle, Pituitary Bio

Leave a comment

From 10/11/2010:

My name is Rashelle and here is my success story.

I grew up as a tall, skinny, athletic and active girl. I was one of those girls you envied who could eat what I wanted, when I wanted without having to worry about gaining weight. In fact most my high school life I maintained a steady weight of 118 pounds.

That all changed in the blink of eye during my senior year of high school. At 18 yrs old my once long and skinny face, turned round and moon-like. My stomach, once flat as a board, now looked like the belly of a pregnant woman. I once stood tall but found it difficult to keep my shoulders back with the “buffalo hump” now protruding behind my neck. My nice long legs now were now covered in stretch marks and I started getting unwanted hair in places where hair should not grow on a girl. I stopped getting my period, felt tired all the time and started to get really bad migraines. I suffered insomnia and depression.

I knew there was something wrong but didn’t know what. The worse part was the embarrassment of gaining so much weight, over 50 pounds in a matter of 4 months.  I would run into old classmate and I could tell by the look on their faces what they were thinking. Some would do double takes, not even recognizing me at first glance. Once I ran in to my high school crush, whom I hadn’t seen in years, and he was so confused by my appearance and swollen face that he asked if I had just gotten my wisdom teeth out? I wanted to crawl under a rock and hide.

After being testd for all sorts of thing,  my family doctor (whom I’m sure thought I was a hypochondriac by now) referred me to an Endocrinologist in 1999. Finally I would be getting some answers!

Much to my disappointment the specialist found nothing wrong with me except claiming that I had a bad case of Polycystic Ovary Syndrome (PCOS). Regretfully this was a wrong diagnosis that caused me to live with Cushing’s disease 4 years longer than I could have. I was prescribed some medication to help with my facial hair on my chin and upper lip. But that was the least of my worries, the hair was hardly noticeable, it was my weight that I was concerned about. From then on I  became an exercising dieting queen. I was going to Curves and working out at the YMCA and I tried every diet imaginable from Weight Watchers to Jenny Craig, Atkins to Body for Life. But no matter what I did nothing seemed to work. I was so frustrated! My last resort was to lay out the money to see Dr Lefebvre, a weight maintenance control specialist. After a few months of treatment, being told to eat 500 calories a day, and losing a minimal amount of weight, I was questioned about how much was I really eating as to inadvertedly accuse me of being a closet eater.

In the year 2000 I went backpacking through Europe for 2 months. Despite the headaches, fatigue and extra weight I had to carry around I was determined to have a good time. The trip was challenging, after 2 months of walking everywhere with a heavy backpack on my back I still had not lost any weight. During this time I was also earning a Degree in Journalism and working lots of hours. Trying to balance school, work and a social life was a difficult because I was exhausted all the time and had zero energy.

Fast Forward to November 2002, age 23; my mom had been with me through this whole rollercoaster ride and was just as frustrated as I was. One night she was searching the internet for what could possibly be wrong with me when she came across this website on Crushing’s Disease. She called me over and we were amazed to find that I had almost every single symptom listed! So the next day I asked my doctor for if I could get a second opinion from a different Endocrinologist.

This time my new specialist said it was unlikely I had Cushing’s yet sent my to get a 24 hr urine test, something the previous Endo had neglected to do. She said it was the “golden test” that would confirm if I did indeed have it. I remember when the test results came in and I got the news. My cortisol level was unequivocally elevated at 1061.3 nmol/day indicating that I most certainly had Cushing’s disease. I was so scared, yet even more so I was relieved that I had finally been diagnosed. The next step was an MRI to determine whether or not I had a tumor on my pituitary gland or on my adrenal gland. As it turned out the tumor lesion was on my pituitary and measured 0.9 x 0.9 x 1.6 cm in height. It was explained to me that pituitary tumors have a 65% cure rate, but there is a lack of cure with pituitary surgery when the tumor is over 1 cm. So my cure rate goes was only 35%. Even so I was anxious to proceed with the surgery despite these statistics.

On Feb 7, 2003 I had the surgery and was discharged from the hospital 5 days later. The road to recovery was a long one but I had high hopes when I notice that my headaches had disappeared and I got my period again for the first time in 4 years. However, I still appeared quite “cushingoid.” Doctors believed that I had been cured but could not tell for sure as it was hard to distinguish scar tissue from the tumor on the MRI. They warned me that results (losing the weight) could take a while so I went on with my life waiting and watching patiently for any changes.

Later that year on October 2003 I was rushed to that hospital for what appeared to be a really horrific migraine. But it was a lot different then any other headache I had ever had. The pain was so intense and almost intolerable I wanted someone to take a gun a shoot me! I spent 36 hours in Emergency being treated for what the emergency doctors diagnosed as “just a bad migraine.” Finally obtaining a CAT scan showed that it wasn’t a migraine after all, my tumor was still there and had hemorrhaged and bled into my optic nerve. I had right sixth nerve palsy with decreased visual acuity in my right eye. I spent 3 weeks in the hospital and could not see properly out of my one eye for over 5 months. Luckily my vision eventually came back 100%. My specialist and surgeon decided that the hemorrhaging had been a blessing in disguise as it could mean that the tumor could be all gone after the episode but it would be too soon to tell.

Then, March 2004 I awoke in the back of the ambulance to be told that I had had a grand mal seizure. Doctors found this to be a mystery since I had no history of seizures or epilepsy. Tests concluded that the crushing’s was still present and I had another MRI which showed residual tumor still extending into the cavernous sinus which is not approachable surgically. The tumor was now only a dangerous 4 mm from my optic nerve.  So the next option was to be referred to a Radiation Oncologist to discuss the option of radiation.

On Oct 20, 2004 I had stereotactic radio surgery. The following week I felt great until the effects of the radiationg suddenly hit me. The radiation took a toll on me and I could not even find the energy to get myself out of bed. It was by far the sickest I have ever been in my whole entire life. Eventually, after being bed ridden for several months I regained my strength and things got back to normal. I still had not lost any weight and showed most of the signs of crushing’s. It is believed that by doing the radiation, it impacted my pituitary function causing it to lose partial functioning. As a result my adrenal glands started to over react to compensate which was not helping my Crushing’s at all.

So, the next step was for surgeons to perform a bilateral adrenalectomy. In June 2006 what was suppose to be a simple, not so risky surgery turned out the opposite. The procedure should have only consisted of 4 very small incisions done laparoscopy. However, during my surgery they discovered that my liver was too large and had to do a complete incision across my whole stomach in order to proceed. Post surgery my blood pressure was so high I was monitored and not let out of the post opt room for 14 hours. On a side note while going through my medical records I discovered that after they had stitched me up a I had to have an X-ray while still under the anesthetia . Apparently the operation room was missing a pair of scissors and they were thought to have been left inside me! Luckily they were found elsewhere.  My recovery was a long and painful but I kept hoping and praying that this would be the cure, especially after my long history of unsuccessful attempts. First the pituitary surgery, the tumor hemorrhaging, the grand mal seizure, radiation, and then the bilateral adrenalectomy. I couldn’t imagine what I was going to do if this did not work as I knew I was running out of options. My fear of never finding a cure led me to seek further answers.

In January 2007 at the age of 26 and a few months post op my parents took me to the Mayo Clinic in Arizona. With all my medical records in hand we met with top of the line doctors and discussed my condition and prior attempts to get cure my crushing’s. The doctors said it was unfortunate and just plain bad luck that I had encountered so many problems on my quest for the cure. As far as the specialist was concerned everything that could be done, had been done. Six months after I got my adrenal glands out I finally noticed that I had started losing weight. At this point I had given up on exercise and eating healthy so found it to be a small miracle. Day by day and month by month the pounds started melting away. I was losing weight as fast as I had put it on and the best part was I wasn’t even putting in any effort to do so. Before I knew it I was down to a healthy 130 pounds and back to myself.

At the age of 27, I had been cured of Crushing’s! I  to had overcome this horrible disease that It had overtaken my life and I\could  begin working on getting my life back. By this point I found it difficult to find a job in the journalism field due to the fact that I had a huge gap in my resume. Having graduated so long ago and not having had any experience made it impossible to even get an interview. Looking back at all I had been through I expected to be happy I had been cured but instead I strangely became depressed.

Once an dedicated Christion, I was now mad at God for making me miss out on so much. I felt like by now I should have been married, had kids, owned a home, been established in my career etc. But I wasn’t. I had lost out on so much precious time. I started to hate the job I once loved, sleep a lot, and do things that were out of character for me. I got involved in a relationship with a married man whom I had met on a plane and that didn’t even live in my city. It had been so long that any one of the opposite sex had even paid attention to me that I thrived on the attention. I latched on and became obsessed and needy (totally not me). I just could not find happiness and had delusions of what my life could be like with this secret love affair. On a whim I decided I was going to move to the same city  as him. So  I packed up all my belongings, ordered a moving truck, gave notice to the place I was renting, got a transfer at my job, and found a new place to live.

Three days before I was suppose to leave I overdosed on some pills. I dont remember the incident, not even taking the pills, just the part of having to drink that disquisting tar stuff. I was admitted to the Psych ward and held against my will. I spent 3 weeks as an inpatient and attended therapy sessions daily. I was diagnosed with bi-polar disorder and it was explained to me by my psychiatrist that I had been grieving from a sense of loss. Only the loss was not a person, it was a loss of time. While battling cushings I was always concentrating on getting better that I didnt even have time to focus on my life goals. But now that I was better I had time to realize all the I missed out on. After being released as an inpatient I became a mandatory outpatient. For one month I had to attend daily classes at the hospital. The sessions focused on being in the present and included things like art classes, sailing, yoga and medititation as well as daily therapy sessions. I learned all sort of coping mechanisms so now when I am depressed  instead of sleeping to escape the pain, I draw color, write  or make a collage. In the end what could have ended in tragedy, opened my eyes and helped me a great deal. I still battle with depression and at times fall into a deep black hole but I always manage to pull myself out of it.

I honestly believe that since losing my adrenal glands I have become a different person. My emotions are intensified, I get stressed and sick easily and am quick to anger. It has definitely taken some time to get use to. Istill have to see the doctor regularly to monitor my meds and will be on medication for the rest of my life. I have hypoglycemia and Addison’s disease which so far only affects my skin pigmentation and gives me a year round tan. All of that is nothing compared to what I was dealing with when I had cushing’s. Having the disease strangely somehow has made me a better person. I am not quick to judge a book by its cover and really truly care for people. In fact, after all the time i spent in the hospital I am now back in school to become a nurse.

So remember that what ever you are facing, whether you have been diagnosed or are trying to get diagnosed, never give up. Stay strong, keep praying and believing.

Update 11/4/2013

In fact, after having completed my Degree in journalism I am now going back to school to become a nurse. After my experience I want nothing more than to help people who are sick. Just remember that what ever you’re facing, whether you have been diagnosed or are trying to get diagnosed, never give up. Stay strong, keep praying and believe you will be cured.

HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Sherry, Undiagnosed Bio

1 Comment

A Golden Oldie

I am a Veteran who goes to the Veteran Clinic for my healthcare.  I have been going there for a little over a year.  I go to a womens clinic for both my primary care and gyn.

Backing up a bit…Since my youngest son who is turning 18 next month was about 3, I recall the onset of many of the symptoms of Cushing’s Disease.  However, I didn’t realize what was going on. I believe a lot of my symptoms started when I fell down backwards down a flight of stairs breaking my elbow and wrist.  I really haven’t been the same since. I have slowly put on 120 pounds over the years, all of it being in my mid-section.  I have suffered off and on migrane headaches. My arms and legs are thin as rails compaired to my mid body.  My skin has gotten transparent and dry.  I have the thick cushion of fat tissue between my shoulder blades.

Then in 2007 I had a severe hysterectomy due to massive bleeding/clotting and cysts.  I had serious complications which include blood clots in my legs and also a PE.  I have gone down hill from there.  My bones, muscles and joints ache so bad and can barely get up and down.  I can’t hardly stand more then a few minutes at a time. I have fluid retention so bad that my current doctor finally put me on lasix daily. Finally I suffer from depression and anxiety and I hate to go out in public because of my condition.  Though my husband gets frustrated with me he is still very protective of me and helps.

I have had so many doctors imply  that my problems are phycological or due to my obesity and I am simply tired of that.  I am on 17 medications now due to blood pressure, fluid retenstion, thyroid, diabetes, neuropathy, depression and anxiety, cholesterol and to insure against a heart attack.

I am 52 years old and I feel like my life is coming to an end.  I just recently was reassigned to another primary doctor as my old one left the clinic.  I didn’t like her at first, her personality was so different from my last doctor.  But Friday she did a completed physical and gyn exam.  She asked me if I had ever been diagnosed with Cushing’s Disease.  I had never heard of this disease.  She started pointing out all the classic signs. She decided she wanted me to have a blood test and was very determined I had it done.  I went home and researched it and indeed I have all but maybe one of the symptoms.

I am a little bit nervous about it and realize its a waiting game as far as tests and more test.  On the other hand I feel like I can finally put a name to what’s been going on and hopefully feel better.  I am glad I found this support group and would enjoy talking to others

UPDATE March 6, 2012: Also, additional systems include excessive hair growth on my face, foggy vision, inability to concentrate, red patchy marks on my arms and I have been told I am slightly bi-polar as well at suffering from anxiety and depression.

HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Adrienne, Steroid-Induced Bio

Leave a comment

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.

Older Entries

%d bloggers like this: