And It's About Time There Was Some Support For Cushing's!
My name is Jessica. I am 34 years old and a mother of a 20 year old. I was always an active soccer player and dancer. I was also always a size 0-6 from high school until about the age of 26. I had just returned to school part time working on my nursing degree and was working 2 to 3 jobs part time to make it through. The year of 2000 began stressful and at this time was when I noticed that I began to have symptoms of Cushings disease but did not know it. I just figured what I was experiencing was due to the stresses of life and the diabetes I had since the age of 18.
The first 8 months of 2000 were the most stressful. In Jan of 2000, my relationship ended, two months later I lost my mother to complications of diabetes, two months after her death, my son's father chose to take me to court to determine his paternity and then in August of that year I also began the nursing program. Keeping in mind the whole time, I was still doing pre-req classes and working at least 2 jobs. I had noticed that I began to feel anxious and panicky. I had changes in sleep, was irritable and noticed that my weight was increasing steadily and I also had BP readings in 170/100 range. I again figured, stress. I always felt that I could handle stress and so I thought my physical symptoms were due to this. I began to also experience dizziness, palpitations, symptoms of what I thought were mini-strokes - slurred speech, facial numbness, tingling, headaches, changes in vision. My back also started hurting and still til this day does. I did see my doctor and all he did was tell me I had anxiety and prescribed me Ativan, yet keep in mind he did not treat my BP, and also stated that I was having transient ischemic attacks, but never did testing even for this or refer me to a neurologist.
So through the next year of nursing school, my weight continued to climb. I used to weight 95 to 100lbs and at this time I was up to 150's. By BP continued to climb, my sugars were increasing and I was so fatigued, could barely get out of bed. My cholesterol was elevated and I was started on statins. I then related the muscle weakness, muscle fatigue and cramps/tightening to the statins and I was changed to different statins 3 times. I had trouble sleeping and noticed that I was becoming more withdrawn, more depressed and anxious and was now having panick attacks. I kept going to doctors for help and even changed a few and was told that it was all in my mind. No one at this point had really done any blood work on me to try and find a cause.
I was almost complete with my nursing program. I was in the last semester, at least two months from graduating, when I mentally felt like I was going to lose my mind. I felt like I was on the verge of a nervous breakdown. My mind felt like it was racing, like I could not control my thoughts. I went to the ER, why I don't know. One of the employees in the ER was actually a fellow nursing student working in the ER as an LVN. She saw me and knew immediately that there was something wrong with me mentally. I was diagnosed with major depressive disorder. I began psychotherapy treatment and was placed on Paxil. Yet all my previously mentioned physical signs and symptoms never went away, yet mentally I was more at peace.
I finished the nursing program in 2002. Yet my weight continued to increase no matter what I did for diet and exercise. I began to feel more bloated, noticed the facial bloating, abdominal bloating, changes in bowel pattern, facial hair, skin dryness, back hump, vision changes, heart racing, every sign you could get from feeling like your body was under the flight or fight response. I felt like I was on a constant or frequent adrenaline rush at times, without any cause for it. This continues until this day.
It is now October of 2006. I weight approx 210lbs, by BP remain elevated and I am currently on insulin pump therapy in which my insulin requirements have continued to increase. I was seeing an endocrinologist whome felt that I had Cushings, but his bedside manner did not go over well with me. Being an ICU nurse, I know what it is like to need to compassionate and understanding about fears, and he did not show any understanding. He was critical about my weight and basically told me I was lying about what I was eating without directly saying so. So I changes MD's. I now see a new female endocrinologist in Rancho Mirage, CA and she is wonderful, She is out my network, so I pay a pretty price, but no dollar value can be placed on good care and my health. I informed her that my previous MD had tested me for Cushings but never really made a final diagnosis. So this month, I underwent my blood work and 24 hour urine and a dexamethasone test which have revealed that I have Cushings. I need to have one more ACTH and cortisol test done next week, just to confirm I guess, then I will be referred to a local neurosurgeon to have what she states for a fact is a pituitary tumor for Cushings. I have had previous MRI's with my other physician, but because they both turned out normal, I was never referred despite all my high cortisol levels and symptoms. She states she will repeat the MRI and hope that this one will actually show the tumor. If not, then there is a test that I could do to show which side it is on.
I am scared and hesitant as to how things will go for me. Deep down I am glad that I actually have a diagnosis. It helps me to know that there is an actual cause that explains my appearance and symptoms and that I am in not in reality "crazy". I hope to have the surgery done soon and to get it over with. I hope my recovery will go well and I hope to feel better soon. It has been a long road as it has been for many others from the stories I have read. You have all inspired me and I am glad I am not alone. I expect to have some bumps in the road I will be traveling ahead, but I do know that there is a light at the end of the tunnel. Just keep in mind that God is our strength when we are weak and that we have nothing to fear but fear itself. I will pray for us all and hope that other out there can find help like we did. God bless you all.
Well most recent MRI finally showed my tumor. I named it "Arnold the Tumonitor". Like in the first terminator, it was sent to destroy me. Then like the second movie, like Linda Hamilton, they may have thought I was crazy, but they finally realized I was telling the truth and like Linda's character, I am fighting back. Anyway, enough of the analogy.
I am scheduled for transphenoidal surgery on Jan 10. I am ready and yet remain hesitant. I know I need to have it done in the hopes of feeling better and sparing what I have left of my life, health and mind. My tumor is active because my facial hair is increasing and I am feeling more emotional. Emotions could be due to the fact I am nearing my surgery date too. I am not looking forward to the nasal packing for 3 days, but I am not to happy with the way I've been feeling for years. I just want to get it over and done with. I've been praying all will go well.
Will update again after surgery, Happy New Year to all you Cushies!!!!!!!!!!
Please e-mail me if you want. It would be great to communicate with other cushies since I have not met anyone personally that is one.
Had my surgery on January 10. Was in hospital for 6 days. Nasal packing was not so bad, but the removal of both the packing on the second day and the nasal splints on the 5th day did hurt. I had two excellent doctors, neurosurgeon Dr. F. Limonadi and ENT Dr. Ahsan( Rancho Mirage, CA) They are the two most patient and kind doctors that I have met. I have been a nurse for almost 5 years, so I have seen many doctors, but these two impressed me with their professionalism. I was blessed to have had these two doctors cross my paths previously. So fortunately, when I found out who I was being referred to and who was assisting I felt immediately comfortable.
Currently I am taking Cortef in the am and pm. I have been feeling pretty good, I am surviving. What other choice do we have, right? My surgery was successful and was lucky to not have any complications. I did not develop diabetes insipidus (keep fingers crossed). Surgeon states he got the tumor, will just follow up as need be. So hang in there fellow cushies, and god bless us all :).
If anyone would like to e-mail me for any reason, feel free.
Surgery done on Jan 10th, it was pretty successful. Still on Cortef at this time, but hopefully I can get off soon. I have had some visual concerns, so if anyone has had any experience with their vision after surgery please let me know. It would be great to hear from anyone about this. I have had some up and downs, but I find my strength in Jesus Christ when I am feeling weak. Sometimes I have to struggle to reach deep inside to find his love, but I eventually do. I know that God will never leave me and is always by my side. We just need to trust and have faith in our difficult times. God is always faithful and will guide you, all you have to do is ask and listen to your heart. God bless you all. Will update again at a later time.