Comments on: The Cushing’s http://blog.slight-hiccup.com Jen's story Wed, 01 Feb 2012 20:54:46 +0000 hourly 1 http://wordpress.com/ By: Kimberley http://blog.slight-hiccup.com/the-ugly-disease/#comment-246 Sat, 31 Jul 2010 07:21:41 +0000 http://blog.slight-hiccup.com/?page_id=41#comment-246 Jen,
I love your blog because it made me laugh so much! I have a pituitary gland tumour like yours was – will get it out in september in melbourne – still have the petrosinus sampling to go first. my endo is big on the “lets to a million tests and then a million more”…which i think is stock-standard for ye olde cushings.
Anyway, as I said, your little side-comments made me laugh a lot – i guess when you get something like this it helps to do that. this gives you a sense of humour about ridiculous things…like brain tumours! not many people get brain-tumour-humour… :P
so many things can go wrong, but so much can go right too; i like your attitude!
hope things are continuing to err on the side of right for you! take care
Kimberley

]]> By: Samantha Newton http://blog.slight-hiccup.com/the-ugly-disease/#comment-237 Sat, 12 Jun 2010 14:07:50 +0000 http://blog.slight-hiccup.com/?page_id=41#comment-237 Our stories are fabulous. I wont go into great detail as mine is similar to all of yours. It has now been 4 years since my pituitar operation, 3 years since my radiation and one year since l had both my adrenal glands out. I am like a new women. I am 37 years old, 40 kilo’s lighter and finally l can play with my 8 year old daughter like a mum should. I too have PSOC, endometriosis and my baby girl was concieved through IVF. As hell as the ride has been, l’m here ( just like you ) and l reckon that because of the crazy mess that our female bodies get us into i have come out stronger, braver and wiser. Good Luck too us Allxxx

]]> By: Chrissy Doiron http://blog.slight-hiccup.com/the-ugly-disease/#comment-201 Thu, 04 Mar 2010 06:15:06 +0000 http://blog.slight-hiccup.com/?page_id=41#comment-201 Well; I can’t believe and don’t know why I came upon this site. Probably because it doesn’t seem like I’m really sick. Thought I was just still very depressed and really lazy. I was born with an underactive thyroid and have a goiter as well. I’m a bigger girl and also have that hump on my back. I absolutely hate myself most of the time; and don’t even look in the mirror except for my face anymore.
Soooo; I’m taking the next step because the Dr. said that my TSH levels were normal. Now i’m heading for an Ultrasound soon. So I’ll keep this updated….I hope i have a good outcome like most of you.
God Bless
Chrissy

]]> By: michaela http://blog.slight-hiccup.com/the-ugly-disease/#comment-52 Sat, 05 Sep 2009 05:16:05 +0000 http://blog.slight-hiccup.com/?page_id=41#comment-52 Wow – all of you have the same story as me! I am 26 and will be 27 on sept 19th – i began testing late august and had my final bloodtest on sept 3rd. i did it all too – bloodwork – two 24hr urine tests, two mri’s – now i have to have a sphenodal sinus sampling and a chest xray. I have gained 45lbs in 9 mths. i went from 110-150! exercise does nothing – and i am miserable. i am a preschool teacher and i just feel tired and crabby all of the time. i hate looking in the mirror and i cry everyday. i just want them to take the two tumors that they found in my head – i have one on each side and remove them already! i am usually such a happy person – and this is making me miserable. i am up all night peeing and can not sleep more than two hours a night. it is so nice to see that there are other people that are suffering with this too. to anyone who has had the surgery – how was it? what is the recovery time? how long were u in the hosp for? is fertility affected by this? my bf and i had been trying for a yr with no luck – is this why? please any answers will help :0)

]]> By: Anne http://blog.slight-hiccup.com/the-ugly-disease/#comment-19 Thu, 27 Aug 2009 23:31:02 +0000 http://blog.slight-hiccup.com/?page_id=41#comment-19 So good reading stuff from other Cushies. It is such a shit thing to have. I was diagnosed straight away but they couldn’t find a tumor. I had all the tests, huge cortisol levels, but no tumor found so all the symtoms you talked about went on for 15 tears. I got put in the too hard basket. Then I changed GPs and she was horrified that it had been let go so long and sent me to a new endo who did all the tests again, still no sign of a tumor so decided to remove both adrenals!!

Surgery was successful (I didn’t die) and symptoms have improved…appetite is less, no more diabetes, blood preesure improved, etc…but I feel still a bit of a whinger because my body aches, particulrly my legs and I am very depressed. Don’t know who I am anymore or how well I am now and what to do with my life. i live in Sydney and would love to meet up with other cushings people…has anyone out there got the energy to initiate something? Sorry, I haven’t.
Thanks for your stories….Anne
Email: annewilliams70@hotmail.com

]]> By: Jodi http://blog.slight-hiccup.com/the-ugly-disease/#comment-15 Mon, 13 Jul 2009 23:36:56 +0000 http://blog.slight-hiccup.com/?page_id=41#comment-15 I just can’t get over this! My story is so simular that I can’t help but to think I have Cushing’s. I was diagnosed with PCOS when I was 28. I already had two children and was remarried. I gained nearly 60 lbs in roughly 4 months, completely stopped having a mensus, grew hair on my chin and my hair started thinning on top. It was aweful! I’m shaped like a pregnant lady..I think my belly is actually bigger now than when I was 9 months pregnant with a 10 lb baby! My arms and legs are thinner than the rest of my body. I went to emergency the other night because i was having heart palpitations and pain in my chest. I was told it was due to low potassium levels and that I had inflammation in the muscle in my chest above my heart. I often have high blood pressure and edema and am on meds for that. I have the tell tale stretch marks all over especially on my torso. I really think this diagnosis has been missed and things are getting way worse. I had a hysterectomy last year because I had enometrial cancer. My aches and pains, sweating and fatigue is being blamed on surgial induced menopause but with everything else going on I believe its more sinister than that! Thank you for sharing your story! I appreciate the info!!

]]> By: Leanne http://blog.slight-hiccup.com/the-ugly-disease/#comment-13 Mon, 13 Jul 2009 11:03:39 +0000 http://blog.slight-hiccup.com/?page_id=41#comment-13 Hi Jen
Love your website. I am so happy to read you are doing well. It is a shite disease all right. I am doing good now after left adrenalectomy on Jan 22 2009 at the Mater. (I love my four scars they tell a good story.) This illness caused me so much grief. My periods completely stopped when I was 36 and planning a baby. Docs could give no reason. I was told all this BS about maybe i was a carrier for Fragile X (NOT). I am 46 now so too late. I shouted at my mother. I could not understand as mum was 39 when she had my brother and my nanna was 42. I went to so many Macquarie Street and Royal womens so called (male)Specialists- cried nearly every day and was patronised. Needless to say my relationship broke up and the next one. Irritable- up and down- then hair loss. Told to rub coconut oil in my scalp by a gynae at RPA. Anyway full blown last year- looked like a kewpie doll. Nothing like buying SIZE 22 underpants from target!! Fortunately I didn’t get the stretch marks. My concentration was shit too. I am law lecturer at Uni and I could barely function. So disempowering..Colleagues thought I was making it up. I was a radiographer before I did law and last Dec I put two and two together when I felt the hump and went and saw my GP- he was so excited as he had never had a case. I was SO excited to get a diagnosis finally and to realise I wasn’t going to become 20 stone ! I did go back to work too early and ended up teaching five subjects last semester which was stupid- you could hardly tell students what you have been through. I was worried I would be seen to be a malingerer. Which is idiotic.
I used to have these awful panic attacks at night -Pulling out powerpoints- white light in the bedroom- sheer terror-thought I was going to die. I am sleeping better now. I broke my ankle last August bushwalking- thank God I did- I was doing gym 6 days and bootcamp 3 mornings- city to surf you name it. I kept asking the bootcamp sarg why I was so hungry after class- I would go home and eat six to eight pieces of toast with jam.
As you can gather I am in Sydney too. Is there a Cushie Group in sydney? One day I would just love to meet up with fellow sufferers and have a giant therapeutic cry. There are worse diseases to get…so I am grateful.
thanks for your site it is very uplifting.
best
Leanne

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