I was first diagnosed with Cushings Disease in the fall of 2007 after having broke my hip (just by stumping my toe – no fall) and then deleveloping a PE which landed me in the ICU for 5 days. And I thank God that these things happend to me because I was rushed to Parkland / UTSW and it was there that the dr started questioning why a 39 year old woman would break her hip in the manner that I did. No other dr questioned this (I had even broked 2 ribs and was told that I must have been laying on the couch funny – WHAT?!?!).
I had been told for years by my dr that I was just obese and needed to diet – IT WAS EASY, he said. (This is the same dr after he found out was I was diagnosed with said – I could have treated you for that Endo is my speciality. Again – WHAT?!?!?)
It took the drs at UTSW about 5 / 10 minutes to look at me and say “We think you have Cushings”. I had never heard of this before and can remember just asking can it be cured? And being told about 70 to 80% of the time.
They still had to test me and that took a few months. They all came back with results that I had Cushings and they found a tumor on my pituitary.
I had to wait a few months before I could have surgery due to I was on blood thinner to treat my PE / blood clots. I had my first surgery in February 2008. Drs said it went well and I should start seeing things go back to normal and that I should also start feeling better. Well I never really did and it came back and I had another surgery January 2011.
And now they think it’s back yet again! I’m mentally and physically done with this disease! I just want them to take everything out of me that would make this horrible disease stay away! I’m very emotional right now and feel completely lost and alone.
I have a great husband (can’t tell you how great he has been) and family that has stood by me the entire time and will always be there for me but as I’m sure a lot of you know sometimes you just want to ‘not be’.
With this go around I’m really struggling. The first time I was almost cheerful cause I finaly knew why I felt so bad and worthless (I had had this disease for probably 10 years before I was diagnosed). The second time, I was a little more bummed about it and this time I’m more depressed than I’ve ever been. I know I’ll get thru this (again) but I’m tired of having to deal with it.
And I know I’m rambling but I’m feeling the need to let this all out. I could go on and on but I think most of you know how I feel.
Thanks for having this site and for allowing me a place to go to vent.
Good luck to us all!
Kelly Jo
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Feb 28, 2014 @ 02:09:03
Hi, I’m Janeth Sulit from manila philippines having diagnosed of Cushings disease year 2000. My symptoms started year 1990 when I was only 16 years old. I have undergone 3 surgeries: adrenalectomy left (2000-wrong treatment as the disease comes from pituitary adenoma), pituitary transphenoidal surgery(2000) and stereotactic radiosurgery last July 2013.At present I still suffer all the symptoms(38 all as I listed) and just like you, I have that feeling of frustration and being hopeless that I can be cure despite of all effort we have been done. I’m tired of fighting this battle which often times I thought I could never win. Plus the financial burden on dealing with this disease is terrible. I have no more resources to continue my battle together with the horrible feelings/side effects of all my medications was untolerable. I think my body does not want to accept those medications i’m taking.
I’m sorry for sounding so depressed, but I know, only all of us who has this disease can understand what we really feel.
Mar 27, 2014 @ 21:25:52
Hola, soy Adriana Betancourth de Colombia, hace ya 3 años me diagnosticaron síndrome de cushing debido a que en una ocasión se me subió la presión y me recetaron prednisolona de 10 mg una diaria, la consumí por un año y mis síntomas eran excesiva sudoración, picazón en la piel, perdida de la visión. cara redonda, adormecimiento en la parte alta de mi espalda y engorde 22 kilos en tan solo 2 meses. por recomendación de una amiga visite el endocrinólogo y me diagnostico este síndrome que ha sido lo peor que ha sucedido en mi vida, ha sido muy difícil porque casi nadie lo conoce, ni lo toma como una enfermedad, mi matrimonio se fue a pique por mis depresiones y todo el mundo me decía que yo engordaba por comer, nadie entendió lo terrible de esta enfermedad, el pelo se me callo, se debilito al igual que las uñas, por mas que dejaba de comer seguía engordando. Me ayudo mucho que encontré un vídeo en español de este síndrome y así les fui mostrando a cada uno, mi esposo y mi hija hasta que por fin entendieron mas o menos mi situación, continuo con las depresiones, ahora sufro de migrañas, mi visión la he ido perdiendo, mi pelo esta debilitado, mis uñas no son las de antes, y aunque la cara de luna ya bajo, mi cuerpo continua obeso, padezco fibromialgia y mis músculos están atrofiados. Tengo 43 años y agradezco a dios por encontrar este tipo de apoyo porque no es fácil, sin embargo todos los días le agradezco a dios por otro día mas de vida, por que me pude parar, hago como terapia cosas de manualidades ya que me es imposible trabajar debido a los dolores musculares y las depresiones que no me dejan ni pararme de la cama dos o tres días, pero aun así doy gracias por seguir con vida.
Apr 24, 2014 @ 10:57:57
Translation (according to Google)
Hi, I’m Adriana Betancourt of Colombia , and 3 years ago I was diagnosed with Cushing’s syndrome because once jumped up the pressure and was prescribed prednisolone 10 mg daily , the consumed for a year and my symptoms were excessive sweating, itchy skin , loss of vision. round face, numbness on the top of my back and fattening 22 kilos in just 2 months. on the recommendation of a friend and I visit the endocrinologist diagnosed this syndrome has been the worst thing that has happened in my life has been very difficult because almost no one knows, or takes it as an illness, my marriage went down for my depressions and everyone told me I gained weight by eating , no one understood how terrible this disease , I callus hair , was weakened as the nails, but that was stopped eating fat. It helped me a lot I found a video in Spanish of this syndrome and so we went showing everyone , my husband and my daughter until I finally understand more about my situation , continuous with the depression, now I suffer from migraines, my vision I’ve been losing my hair is weakened , my nails are not as before, and although the moon face and on my body continues obese, suffer fibromyalgia and my muscles are atrophied . I am 43 and I thank God for finding this kind of support because it is not easy, but every day I thank God for another day of life , he could stop me , do craft things as therapy since I is unable to work due to muscle pains and depressions that will not let me stand in the bed two or three days , but still thank you for staying alive .