And It's About Time There Was Some Support For Cushing's!
Hello fellow Cushies. My name is Myra, & this is my story: I have always been a friendly & kind person. I never said anything to anyone if I knew it was going to hurt their feelings. But that all changed. I started to have that "I don't care what I say" attitude, and gained a lot of weight, and had hair growth on my face. I spend years & years without going to the doctor. I just never wanted to go, even though I knew something wasn't right.
After the birth of my son (My Precious Angel) back in 1994, I stopped menstruating. Very concerning, but still in denial & did not seek medical attention. I then moved to San Antonio, & suffered from headaches, sometimes severe. Thinking of migraines, I just took OTC medication for those (sometimes helped).
Then I attended Nursing School, & studied on the endocrine system. Saw a picture of a patient with Cushing's, & I thought "Boy, I have a similar appearance." I had explained my symptoms to my Nursing Instructors, and they asked why I haven't gone to the doctor. Explaining that I had no medical insurance and no money (terrible how that seems to be the main focus in medicine today), they said I had to be seen. Of course, again, I dismissed it.
I noticed I was getting ill almost every 2 weeks. I would recover (took awhile) then become sick again. I would rise from a chair or out of bed, and had to wait, because I would get this tremendous, painful pressure on my head. It felt like someone was crushing my head with their hands. I thought, "Lack of sleep and rest." Then finally on January 12, 2005 I couldn't take it anymore. I had a horrible headache that wouldn't go away and nothing was making it better. I knew something was wrong, because nothing I did relieved it. I can withstand a lot of pain, but this time, I cried like a baby. On the pain scale of 1 to 10, my pain was a hundred!!!! My husband knew something was wrong, because I never cry.
I then decided to go to the hospital. I had a CT done in the emergency room (it was late at night). The ER doctor came back and told me he was glad I came in, because I had a mass in between my eyes. I looked at him in denial. He then stated it could be a tumor, or an aneurysm. I was in shock. Out of the two, I was hoping for a tumor. I was admitted into the hospital where an MRI +/- contrast was done. I was informed I had a pituitary gland tumor. Surgery was not emergent, but if I prolonged the surgery, then the next attack I had could cause me to lose my eye sight (tumor pushing on optic chiasm). While there, I was also diagnosed with Diabetes, Type 2. I was put on meds for that.
I went home 2 days later, and wondering where I was going to come up with the money to have surgery done. I wasn't even thinking of anything else. Luckily here in San Antonio, there is a program called CareLink. It isn't health insurance, but instead a payment plan for those individuals who cannot get private insurance anywhere else. I applied and got accepted. Through here, I got a PCP who then referred me to a neurosurgeon. The neurosurgeon agreed to the pituitary gland tumor, and I was referred to an Endocrinologist and Eye Doctor for testing. My eye sight was 20/20. Now, when I went to see my Endocrinologist, he performed several blood tests, and the 24-hour urine collection (I had no idea why). At this time, I was only concerned about the tumor.
After all the tests were done, my Endo took another look at me and said, "Cushing's". He walked out of the room, and came in with another Endo, who agreed with his diagnosis. I am blessed to have gotten an Endocrinologist who recognized Cushings. But still, I hadn't looked up Cushing's. I had Pit surgery (Transphenoidal Resection) on January 10, 2006. And let me tell you, it has been hell since then. My nose is still raw, I have a hole in my septum (huge). My mucus stays stuck way back in my nostril. I need a moistened q-tip to try and get it out with gentle blowing. And now, I have a putrid smell in my nose. I know its infected. Am having panic attacks, depression, my joints pop, and now I can't even breathe in deeply without my whole spine cracking (have to be careful of how I move in bed, because it causes the same effect).
I have lost a considerable amount of weight, have bowel problems, no flatus at all, abscess in my mouth, gums are all red to the point of bleeding, a ball on the left side of my neck, lower back pain (as if my kidneys were inflamed), upper left muscle pain, very thin limbs, dizziness, inability to swallow at times. This is just the beginning.
In surgery, I had complications. I spilled cerebrospinal fluid, and had a lumbar puncture done to relieve the pressure in my head. Now I can't feel my abdomen or the space right above my buttocks. It' s very hard to stay optimistic when your health is declining. Every day I wake up and say, "Now what?" I know that the last thing anyone loses is HOPE. I tell myself that every day. I'm sorry for this lengthy bio.
Even though my health is declining, I want to get the word out. Cushing's Syndrome/Disease is a horrible thing. I will do my best to inform others of this. Even if you think you might have Cushing's, go to the doctor ASAP!!! Do not wait years & years like I did. I'll be updating my bio as time passes. Take Care Everyone. Fighting together, we can find a cure!!!!!