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Sandie R's Story

Hi, I am Sandie and I am 33 years old, Married to Mat and have two children aged 9 and 6. With a bit of luck, they will be able to have a mum back within the next year - here is my story!

I had always battled with weight like most people but over the last 4yrs or so it kept creeping on and on and no diet seemed to work (now I know why)!... A lot of my symptoms I put down to stress as the last 4 years had been mental to say the least. Take a breath - are you ready ? 1) Father died of a Brain Tumour, 2) I had to have a Colposcopy for Suspected Cervical Cancer, 3) Fell down the stairs and damaged all the ligaments in my ankle, immobilizing me for 8mths, 3)lost my job as Care assistant - because of injury!, 4) Kitchen Company went into Liquidation halfway through the fit of a £6,000 kitchen, 5)Jan 03 Father in law diagnosed with Pancreatic Cancer and last but I expect not least 6) ME - possible Cushie !.... So all the above have had my BP racing for NASA. I also started a new full time job which was extremely stressful and now have given it up only a fortnight ago because BP was 100/160 (Time to calm down girl !).

I original went to a Doctor at my surgery for a stiff neck in May03 and also asked him about this rash I had on my arms which was spreading down my back. He examined me and started asking me questions about my lifestyle, diet etc... I explained about the last 4yrs, worked full time, was a full time mum and had been dieting for the last 2 years and going to the gym for the last 3mths, but nothing seemed to work! He couldn't understand why I was so big 16.5 stone (5'3).. I told him that I put my excessive weight gain down to my accident, but had hoped it would have started to decrease by now. He asked me if he could test my thyroid and for Cushing's? Of course I said, but what is Cushing's? - he advised me to go onto the internet, well what a surprise, out of the 15 or so symptoms I had 10 of them, Moon face, hump, stretchmarks,hp,excess weight round bust and abdomen, swollen ankles, aching limbs, tiredness, loss of libido -actually probably a few more! But all of this I put down to being over weight and body not functioning right due to the stress.

I had a blood test that confirmed that Thyroid was fine but Cortisol level was sky high, further tests required. Had dexamethasone test 23.00hrs then blood test 09.00 next day - result over 500!.. needed another one, this time a 48hr one, again skyhigh. Doc asked how I felt about this looking like Cushing's and I said 'relieved'. I explained that I felt like I was going out of my mind as to why nothing worked and why I felt so rough, but did not want to seem like a hypochondriac, which now reading other bio's I know I was not alone....and reading these bio's was like looking in the mirror.

I am now awaiting the results of the ACTH levels which should come back this week and then will be able to see the Consultant, who apparently is referring me to a Specialist Centre in either Bristol or London - so the consultant is quite convinced that it is Cushing's but what type I don't know yet.

I have been so LUCKY that the doc picked up on this so quickly and that my early test have all proved positive so far, considering the battle the rest of the members have had to face, I really do feel for them. I'm going out of my mind just waiting a few months let alone years of finding doctors who believe you should be sectioned!

I have been asked by my doctor if I would be a case study as they have only come across a Cushie through Medication and not a Natural!... I am only happy to help if it would help just one more person then something wonderful has come out of all this!

Finding this site has been such a lifeline, I have already made contact with someone else in the UK and she gave me some sound advice (Thank you Hilary!)...I'll keep you updated Guy's and keep positive - we all have a future to fight for !

Best wishes to you all

Sandie xxx

Update July 22, 2003

Had it confirmed today that I have Cushing's, awaiting emergency MRI then need to see Consultant on 15/08/03, then hopefully adrenal surgery within 4 - 8 weeks,

I'll keep you posted!!!!!

Update September 9, 2003

I have a date for my surgery. It's for the 13th Oct (providing they have a bed!) and I think its going to be done by Lap but theres a strong chance it may result in Open once im under!

Fingers crossed theyll find it easy, hopefully it will have a flashing light on it to help the navigation! lol...

Update October 31, 2003

I am now 12 months post op and boy what a journey this has been. I knew it wasn't going to be easy and is wasn't, well isn't as it's not over yet. I am still waiting for my other adrenal gland to wake up and it does from time to time giving me a great high but this seems to last for only a few day and then back to being asleep. My Endo cannot understand this as he said that once it's awake it should stay awake.

I left hospital taking 80mgs of Hydrocortisone a day and have tapered down now to 7.5 mgs, its probably been the hardest thing I have ever had to do as the withdrawal pain was unbearable. I couldn't seem to find the right combination of pain killers, even today I only get 'relief' never have been pain free unless I whack up my steroid dose. I have had 4 adrenal crisis's until they realised I should be on fludrocortisone, I think you call it florenf in the US, since then I have been coping so much better. I have been lucky in the sense that within 24 hrs of my surgery my redness, straie and veiny 'roadmap' legs started to fade dramatically and within 3mths started to lose some weight with a total of 80lb now GONE! I didn't even have to try at that one lol.....I did have a minute appetite for months and was quite nauseous which is normal.

But do you know apart from all of the above? IT WAS SO WORTH IT! Every minute IS worth it. I have a normal figure back, well nearly lol I am seeing the Plastic surgeon for abdominalplasty and a Breast reduction/lift due to the rapid weightloss, I have my libido back and a happy hubby! I look normal and more energy although still a lot of pain but I think my pain threshold has increased obviously. I have more confidence and even wore a tankini on holiday, boy that is an achievement for someone who wouldn't even enter a public swimming baths let alone go in!

Also, to celebrate what we had been through and our 10th wedding anniversary Mat and I renewed our vows in Sept and it was fantastic to stand by my wonderful husband who had never left my side during my dark journey, without him I am only half a person. My gorgeous children who's tiny eyes have seen so much were there too. Having my babies, marrying Mat and passing my driving test (lol) were the only things I saw thru to the end until I became a Cushie and this has made me a better, more patient, more confident person.

So for everyone out there battling for your diagnosis, recovery and never ending memories of Cushing's, you will get there, you have too, this disease in its own way makes us stronger because we know we can beat it.

I have attached some pictures for you to see and I hope it gives you some inspiration with you onward journey too.

Sandiexx

Update September 14th 2006

Phew...its been a while and still a struggle. I have just had my second reconstructive operation, I had a tummy tuck in December 05 and now they have just done a circumfral lipectomy...in other words I now have a zip all the way around lol... altogether they have taken away 16lbs of fat. I am sore but happy.

I still have the aches and pains, not sure why as my adrenal gland woke up in Jan 05 and my cortisol level has been fine. Maybe its just one of those things I will have to live with? Still suffering from the depression, again, maybe a life long pal who knows...who knows with this illness.

Take care

With Mat 1993	With Ben 1997
Sandie and Donna
Moonface	Buffalo hump
Stretchmarks	Whole Body

Double Click to View Full-Size

2004

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This bio has been translated into Hungarian at http://hipofizis.extra.hu/szerelem/aszerelemereje.html.

A szerelem és az orvostudomány ereje
avagy igaz történet a Cushing-kórról

Az ember gyakran lesz elkeserdett, csalódott, depressziós a mindennapok bosszúságai miatt. Ha gondjait betegség tetézi még inkább kilátástalanabbul látja a helyzetét. Ez tovább fokozza a fizikai, lelki problémákat egyaránt. Az esetek dönto" többségében pedig kihat a párkapcsolatokra is. Szerintem a fizikai gyötrelmeink egyfajta megméretetések, arra kellenek, hogy többet tudjunk meg magunkról, szeretteinkro"l, képessé válunk küzdeni az egészségért, rájöhetünk, hogy mennyi minden szép a világban. A betegség a szerelem máglyáján " olyan mint a szél. A kis tüzeket kioltja, a nagyokat fellobbantja. A nagyokat fellobbantja..."*

Engedjétek meg, hogy elmeséljek egy nagyon szép, igaz történetet arról miként mentette meg a szerelem és az orvostudomány egy no" életét, adva vissza o"t boldogan a szeretteinek.

Sandie ezen a képen 1993-ban határtalan jókedvben és szeretetben fürdo"zött kedvesével Mattel.

Négy évvel késo"bb, '97-ben már Matto"l született kedves kisfiával, Bennel volt látható boldog anyaként.

Bal oldalon áll Sandie. Azt hihetnénk az egész egy tündérmese: Csinos külso", szereto" férj, gyerek akit újjabb kisbaba követ... De az élet a Cushing-kór nevu" súlyos betegséggel sújtotta a fiatal no"t.

Kezdtek kialakulni rajta a baj látványos tünetei: Jelento"s hízás, kikerekedett, úgynevezett holdvilág arc.

Zsírpúp, vagy más néven bölénypúp a háton.

Lila csíkok a testen, lecsünggo" has, deformált testalkat.

Az egykori bomba alakot hatalmas túlsúly torzította el. Mat felesége elvesztette vonzerejét.

Az orvostudomány és Sandie igyekezete, türeleme meghozta a gyümölcsét: Hosszú s fájdalmakkal teli kezelések révén jelento"sen sikerült javítani a no" életmino"ségén, alakján.

Ma már Sandie újra egy kellemes jelenség megjelenésével. Mindebben benne van orvosai szaktudása, segíto" szándéka, az o" küzdeni akarása s rengeteg energiája. Az évek hosszú kálváriája alatt azonban Mat kitarott a no" mellett aki mindig jó társa volt, s gyermekekkel ajándékozta meg. Ez a bizalom, segítségnyújtás, töro"dés nagyon sokat jelentett Sandie számára. 2004 szeptember 25.-én tartották meg békében, szeretetben házasságuk 10. évfordulóját. Kívánok mégtöbb boldogsággal teli esztendo"t nekik!

Sandie Roughley története a külföldi cushings-help.com weboldalról származik, de nem egyedülálló a világban. Jómagam voltam olyan szerencsés, hogy megismerhettem egy Andi nevu" életvidám hölgyet, aki szintén Cushing-kórban szenved. Férjével a megpróbáltatások ellenére szeretik egymást, igazi harmóniában élnek kisgyermekükkel. Jó egészséget és sok örömöt számukra, meg a hasonlóan nehéz helyzetben lévo" szerelmesek számára!

Szerzo": Fray Adrienn - a Hipofízis Csapatból. Website: http://hipofizis.hu

Forrás: Sandie Roughley's Story... Website: http://www.cushings-help.com/sandier.htm
* Idézet: Szécsi Pál " Távollét " címu" számából. Zene: Bryan Adams - Everything I do