Home

Vicky (Vicjy), Adrenal Bio

2 Comments

Hi. For the last couple of years I have had different symptoms. I’m 45 and feel like I’m 70. I think it started about 3 years ago. I would break or fracture something and it would take forever to heal. I gained over 60 lbs. I’m always tired yet don’t sleep well. I look like I’m 9 months pregnant but skinny arms and legs. Stretch marks on body. Round red Face that constantly feels hot. My back has a hump and my neck has fat pads. Finally, prehypertension. I also have intense itching especially in a soecific area. Oh, let’s not forget anxiety and focus issues. .

I had enough. About 7 months ago I began going from doctor to doctor. Every test came back fine and they dismissed me. Finally, I went to an endo. She tested me for Cushings. I gad 5 tests and all came back positive. All this took time but I tried to be patient. I know this is horrible but I was actually happy to finally have an answer to my issues. I then had a CT scan and found an afonona in my left adrenal gland.

I had surgery a week ago today. I’ve heard so many different stories of figuring out if they have cushings but little about their recovery. I’m hoping to hear people’s recovery stories. I’m actually much better than I thought I’d be. I’m weak, still some pain at surgical sight, out of breath, and very emotional. Also, hard to do an intellectual activity before feeling overwhelmed.

Can you all share your journey? I’m taking 40 mg of hydrocortisone a day. I was wondering if anyone had itchiness as a symptom. Doctors have told me that they haven’t heard of that as a symptom of cushings. It is horrible with me and am hoping it will go away with this surgery. I feel like it has gotten better.

Looking forward to hearing about some recovery stories and feel free to ask me anything to help other understand what they are going through.

 

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

Alex C (Alex C), Undiagnosed Bio

2 Comments

Hi, My name is alex and i honestly have no idea what’s wrong with me.

about 5 years ago i became ill, all of a sudden went from a healthy strong active person, to feeling weak, tired, i gained weight, my hair started thinning, among other symptoms, i was diagnosed with diabetes, my sugars were in the 500’s then one day about 6 months later, my diabetes went away, no change in diet, no change in lifestyle, just up and went away…but it was replaced with excruciating pain, throughout my body mainly in my legs and arms, they said its pribably neuropathy… but i had only been diabetic for 6 months, they tested and found no neuropathy…they said it might be MS, they tested nope not MS….they said it might be fibromyalgia…i don’t have trigger points no not fibromyalgia,,,i started getting infections….gum disease…eye infections… bites and scratches on my legs which used to heal quickly no longer healed and when they did they left scars and marks on my skin….the pain was so unbearable… they tried all the neurological meds, cymbalta, lyrica, etc….. nothing helped…

finally they gave me fentanyl patches and norco and i was able to manage the pain… but still no diagnosis… i saw hemotologists, oncologist, because at one point they thought i had luekemia which i dont… i saw a rheumotologist and nothing…my pain management doctor said i had a bulging disc in my back and wanted to give me steroid injections in my spine…he said that’s whats causing the pain….but the pain was in my legs and arms a bulging disc in my lower spine would cause pain in my legs and lower back only so i disagreed with his assesment…still i got 1 injection and it didnt help… he said oh it could take up to 3 for you to feel relief i refused the injections and he stopped giving me pain meds, he said since i wasn’t cooperating he couldn’t treat me anymore… so i suffered

one day on an emergency room visit i saw a doctor and told him my symptoms… (i would tell any doctor that would listen to try to find something.. i know something is wrong with me) he said have your pcp test your cortisol levels….well my corisol levels were 5 times the normal count.. they did the test twice…and both times they showed 5 times the normal level…now i don’t have the moon face or the buffalo hump but i do have every other symptom of cushings…i went to and endocronologist who right away said… you don’t have cushings…this was over the course of the first 2 years… now 3 years after that and 5 years from the start i’m still suffering the pain i’ve gotten used too for the most part but sometimes it;’s sooo bad i have to go to ER and get morphine and dilauded to help…last week i was in the ER and they gave me 3 shots of IV morphine within two hours and it only lasted about 20 minutes..each time… finally a shot of dilaudid helped and i was able to come home and rest ….. still no difinitive diagnosis other than chronic pain…and my diabetes has come back recently…i no longer see doctors because i have never gotten help from them…i’m lost and don’t know what to do anymore…if it wasn’t for my kids.. i have 3 i don’t think i could go on…invisible illnesses are real and devestating…

 

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

Danielle, Undiagnosed (Cyclical Cushing’s)

1 Comment

 

May-Aug 2013 Age 17-18

I started noticing that i was losing weight. My arms and legs looked like toothpicks and i had bruises everywhere. i was fairly active i would run and lift weights everyday minus some weekends. Till i couldnt no more. I became very very weak, i was tired and fatigued all the time no matter how much sleep i got. I would wake up 5-8 times a night to pee, i was constantly hungry. Omgsh never not hungry i could eat and eat and eat but i still wasnt big. I was “too skinny”. My hair started to fall out in clumps , i would get these attacks where i would have insane blurry vision, i would become super pale and my stomach would blow up like a balloon. i would have terrible back and stomach pains , ringing in my ears.I would started shaking,my speech would become slurred and all over the place. I would not be able to walk straight or think clearly. I was very scared and i hated everytime these would happen. They usually hit the more active i was. so if i would run or even jog/ walk for more than 15 min it would hit. i became scared of doing anything

More symptoms: Constipation
drooling
Muscles felt like they were eating them selves
terrible headaches
no period
thirsty!!!!!
Constant! urination
muscle twitches
muscle spasms and jerks
waking up every hour
terrible acid reflux! it would wake me up

SEPT 2013
weight 115-120lbs

I started working for my father at his shop in sept 2013.I did not last very long. I got to the point where i was dying. I was sick every week, my periods had stopped , i would spot every day. I couldnt think AT ALL i felt so stupid. Like i was in a haze , i started getting really bad hypoglycemea ,which made things even worse. Despite eating so much food it would not go away.
I should mention my moods, I have always been more aggressive and loud happy go getter, i noticed that i was extremely irritable.. and jumpy all the time. I would cry for no reason and my anxiety was getting worse and my anger was like never before. One day after days and days of struggling to work, i went to the grocery store with my father , and i was not able to push the shopping cart, i almost fainted and had to have him take me to the car. Mind u my whole family knows me as “the strong one” . I was benching 220 lbs at 14, now i couldnt push a shopping cart. He couldnt believe it and i stopped working a week later. I had too many things going on i knew i had to get them sorted before i could go back to work and then go to collage.

I went to the doc who sent me to an Endocrinologist. She tested me,
LOW GH
LOW FSH
LOW THYROID
HIGH URINE OUTPUT
LOW LH

At this point i just wanted to get fixed. She told me i had to gain weight in order for my sex hormones to bump up and maybe id feeel a bit better. So i docs orders and started to eat, when ever i was hungry.. which was alot.
i came back to see her a month later, and i had gained 35 lbs!My skin was not as dry, still bruising,and terrible headaches but i had way more energy. I thought i was getting better. Little did i know my tests did not show that. I had cortisol levels 7x the normal limit, my urine out put was very high. I did a 24 hour urine test an filled 3 jugs. She suggested maybe diabetes insipidus and also.. a brain tumor. I was kinda freaked when i heard the word tumor but i just wanted to feel normal . As long as i could get help i didnt care.

2014
i did another dex which came back positive for cushings, i had to do one more and my tests suddenly dropped again. After a few more dexa tests coming back neg she ended up dismissing me and told me that i do not have cushings.

Note: I Did have a neg Pituitary mri
and adrenal

I was heartbroken . i thought that this was my way out to finally feel normal or at least ok.
She sent me to another endo who refused to see me. So i started seeing a naturopath, i spent 800$ the first day of seeing her and all those natural supps, dieting recommendations she gave me did not do a thing. TMI I also went to get a colonic and colonoscopy around this time because i just could not go . And i was pooping out blood.They said everything was okay and that it may have been hemmeroids.

2015
Specialists:
ENDO
E.N.T
Nephrologist

My family doctor suggested maybe i have fibro.. then celiac.. then hashimotos.. then maybe MS? She finally sent me to ANOTHER Endo after those tests were NEG , who said he could not help me the first day of meeting him. During this time i was devloping social anxiety .It was very hard for me to talk to people which isnt like me at all. Seeing as i was a social butterfly.My face would go beat red after any little stress i had. i hated it! i had been seeing and E.N.T because i was coughing out blood. They told me i had cysts in my nasal passages and it was nothing to worry about. And that i also have damage in my esophagus due to the acid . She prescribed me Tecta.I even saw a nephrologist because i was constantly thirsty and constantly urinating. He was the worst doc i have ever seen. He told me i knew too much and i walked out because he could not help me.My energy levels were erratic. Some days i would have so much energy and clean clean clean want to run and do everythiing! , other days i would get out of bed and crash very quickly.This was becoming a burden.

2016 Aged :21
Still trying to get help
moved
weight: 165 (gained)
Specialists: Sleeping
Neuro

I became very frustrated and sad of always being let down and disapointed by all these doctors. I kind of gave up for a bit.i saw two last specialists which were sleeping specialist and a neurologist . which did nothing but prescribe me sleeping pills for my insomnia.The neuro did tell me that the symptoms i am having were not caused by cushings, so he started me on topiramate. An antiepileptic drug.

I finally contacted a pituitary specialist downtown toronto. And thank the heavens ! i got an answer! CYCLICAL cushings. He told me im 99% to have cushings i just need one more biochemical confirmation. He have me a T3 MRI of my pituitary which show an enlargment right side pituitary. “One more test and we can go in there and operate” i was ecstatic! so happy to have finally found someone who can help me.

i tested and tested but my results came back Neg, or just a little bit higher. a few months later He told me that he will keep testing me but he does not think it is cushings anymore. Another heartbreak 😦

2017
moved again
aged 21
Specialists:ENDO

I now have another dexa test and a 24 hour urine.I need this last one and they will operate . during this i am trying to move out to ANY cheap apartment because my father does not help me at all. He makes me much worse and i have no where to go other than his place. He is a big burden and does not understand what im going through at all, i have had two hospital visits this year due to overdose. This is something that i thought i would never do in my entire life, but it happened. I can not handle living like this especially when i have someone putting me down and denying my disease everyday. I am seeing a therapist now and a psychiatrist but the pills they give me do not help when i cannot live my life or work through any of my problems. I have gone to a shelter but this disease does not make it easy for me to live there.I only have my partner helping me right now . ANY donations would be greatly appreciated. !!!!!!!

this is my go fund me to help me get out of here in the mean time.
Thank you so much for reading my story and anyone,, feel free to email me or ask me questions.
i am i gona keep this updated when i go to docs or get any new info

 

Please email Danielle for the URL to her GoFundMe Page

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

Raquel O (Raquel8a) Adrenal Bio

2 Comments

undiagnosed2

 

I’m not sure how long I’ve had Cushing’s. I think it’s been a slow progression for about 20 years.

In April my father passed away and we were on our way to Church for his mass. We got smashed from behind turning into the Church’s driveway, we ended up in an ambulance. At the hospital they did a full body CT scan. (I would have never gotten one if the accident never happened.) They found a growth on my adrenal gland. That started the ball rolling. I believe my father was responsible for helping me discover the problem.

I started looking on the internet about adrenal tumors. It talked about Cushing’s. Each and every symptom they described I had. It explained soooooo much. I thought I was going through early menopause. I was suicidal, and severly depressed, on 2 different medications to help. I chalked everything up to being “fat”. I didn’t go to the doctor because I didn’t want to hear “you just need to lose some weight.”

I went to an endocrinologist, she started me on the first urine test and some blood work. Two weeks later, I went back to get the results. I told her about Cushing’s and that I had all the symptoms. She said the results were abnormal but it could be a number of different things. She wanted to repeat the urine test and said that I SEEMED to be convinced that it was Cushing’s Disease. Needless to say I felt pretty stupid. When the results came back guess what?

After the accident the tumor seemed to have gotten aggravated. I was having a lot more confusion, loss of focus, etc. I chalked it all up to the accident, maybe it was a concussion. Since then it’s become worse. I get frustrated and depressed because I’m experiencing a lot more forgetfulness, and confusion. My depression meds are holding me up but barely. I’m tired all the time. My husband sometimes, I feel, doesn’t believe me and gets frustrated. My kids are always asking me if I’m okay (and usually the answer is no). I don’t want them to grow up remembering how I was always so sick and tired.

My next step is to get the tumor removed. The neurosurgeon is busy and my tumor is not life threatening so I had to wait a long time (couple of weeks) for a consultation. I finally saw him an now I’m waiting for the ENT to get back from vacation to set a date. So, I’m in limbo. Not helping!

My next step is to get the tumor removed. The neurosurgeon is busy and my tumor is not life threatening so I had to wait a long time (couple of weeks) for a consultation. I finally saw him an now I’m waiting for the ENT to get back from vacation to set a date. So, I’m in limbo. Not helping!

After the surgery am I supposed to be “normal?” I’m afraid of “normal.” I don’t know what it’s like to be “normal.” Will I be a different person? Will I no longer be fat? Will I get rid of the hypertension, and diabetes? the redness everyone thinks is sunburn? will I be able to get into a standing position from the floor? I’m very FRIGHTENED of the “normal” that I’m supposed to become.

The surgery, no problem, my dad’s watching over me. I’m convinced he’s responsible for finding the tumor and will help me through.

Thanks for taking the time to read this, although this bio only scratches the surface.

 

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

Julie B, Adrenal Bio

Leave a comment

adrenal-medulla
Hello, 47 year old female with two adrenal adenomas. Gaining weight like crazy, feeling tired, can not sleep, pitting edema in legs, bruise easily, pain in side, back, joints….and many other things.
Frustrated….had two 1mg dex suppression test that both came back high levels of cortisol. Had two 24 hour urinary cortisol that came back fine. Now on my 3rd doctor as I keep getting refered out.

Having a 2 mg dex suppression test Monday along with saliva test which I have now read that with adrenal adenoma saliva test may come back negative.

Everything in my life is changing and I am tired of feeling bad along with how long the process is to get a diagnosis.

Any support and information would be greatly appreciated.

 

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

Niamh (niamhiblog), Adrenal Bio

2 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.

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

Rebecca, Undiagnosed Bio

4 Comments

golden-oldie

 

Originally from Friday, October 3, 2008

I am 24 years old.

Last year my life changed. In less than 3 months I gained 39 kg or 85.8 pounds in less than 4 months. I am constantly tired no matter how much I sleep. I suffer on/off insomnia, my skin is fragile and thin, my hair on my head is falling out in droves and is not growing fast at all. I suffer severe migranes, have horrible stretch marks across my body, have lost my shape, have a swollen (moonface?) face, have extra hair growth on the body and I am bruising easily.

I have little concentration, am very irratible and have noticed personality changes. I get heatrashes in the middle of winter across my face, yet my hands will be frozen. My bones ache and I have lost so much muscle strength. I am so depressed, have a low libido, have no period and lately I am having problems with my eyes.

My normal doctor knows there is something wrong however none of the endo’s I have seen do anything. One told me it was all from depression. Another told me I stuff my face too much. This especially hurt as I was living on 2400 Kilojoules a day, barely surviving, exercising like crazy and still putting on a kilo a week.

My blood tests show my cortisol is high, my platlet level is getting higher and higher, I am constantly showing signs of infections/inflammation, I have hypothyroidism.

In Australia, the only way to diagnose cushings is with a 24hr urine test, yet mine was only “moderately” high. It is affecting everything in my life and I just want to know what it is. One of the hardest parts is the not knowing.

Everytime I eat, people stare and you can tell they think I’m gross. People make nasty comments about my weight and say I should exercise. I don’t do much anymore because I just can’t manage it, but even when I did, nothing positive would happen. Its affecting my friendships and relationships. I feel like such a winge, but I can’t help how hopeless it feels.

I am so grateful for this, for being able to vent with others that actually understand what its like.

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

Older Entries

%d bloggers like this: