And It's About Time There Was Some Support For Cushing's!
I have been sick for many years. The doctors could not define what my problem was for 15 years. My family doctor found the problem and my surgeon would not believe any of the test results from my family md, so he had to run his own. He even had the audacity to tell me that whoever told me I had Cushing's didn't know his ass from a hole in the ground. Well, I trusted my family md and insisted that the surgeon do whatever was necessary to correct what was wrong with me. I got so adamant that he even told me I was a bitch that he did not want to cross. Well, that just made me more determined.
I am a single mother with two children from two different marriages and was not about to die and let them grow up apart from each. I barely held on to my job, I still have trouble with energy levels being sapped almost daily. My house looks a wreck because I just can't do everything. My memory is such that my teenage daughter has to remind me to pay the bills. She is only 16 and knows what a shut-off notice looks like before opening the envelope. This is absurd. A child should not have to deal with all this.
Well, I am doing better since my surgery last April, but it is still very hard to do all that I have to do in a day. On top of everything else, my surgeon convinced me that all would be better and I would not have any more problems after the surgery. He is good at what he does, but he has never had to live with the problem of Cushing's and does not understand what we (the patients) and our family members have to go through. I believed him and decided to take my employer up on an offer of sending me back to school. I work at a hospital of all places as a registration clerk. I am now in school full time plus working full time nights and still having to be a parent to me 2 teenagers left at home. My oldest child is in college.
My symptoms were such that she gave up on our family when she was 16 and left home. She lived with my father and stepmother, who is a nurse. They don't even know what I go through. I have no support from family, they all tell me that I am just looking for attention and need to grow up. Well, I don't wish this on anyone but I wish they could just understand. They just sweep it under the rug like yesterday's dirt. My oldest daughter does not even fathom the things her siblings have to contend with with me being sick.
Everyone thinks I should be all better now that the tumor is removed. My health insurance company refused most medicines, tests, and the like as being not necessary. I have to fight for every little thing I get for help. I barely make ends meet, so I can't lose my job. Hence, the going back to school. My employer was offering a course for RNs. I took advantage of that. They pay as long as I pass. The problem is, I don't have the energy to do the homework and study time I just fall asleep in whatever chair I am sitting in. I manage to make it through most nights at work, but have to deal with everyone making remarks like "what did she do all night?" Well, it take me about 2-3 times longer than everyone else to finish things. I go without my breaks so that I get as much accomplished as I possibly can. Third shift works better because it is slower in the emergency room generally. Also, with only working one shift, I seem to be able to rest better than when I was working all 3 shifts in a pay period (2 wks). My body just could not adjust to the swinging. I was losing sleep, not eating, the whole gambit.
The beginning was many migraines that the neurologist could not determine a cause for. Nor would any of the medicines work on them. I think towards the end I had migraines that lasted for weeks on end. Then one day at work, I lost my sight for about 5 minutes. My family md (henceforth referred to as the fmd), had me do some blood tests. My sugar was over 600. I was still walking and not acting like most people with diabetes do. He then sent me to an eye doctor because my eyes sometimes are so bad I cannot see 2 inches in front of my nose.
After medication for the diabetes for about 4 months, I woke up one morning thinking I was having a stroke. My mother had just had what they call a fem-pop surgery done and had had several ministrokes, so I was very concerned about that. I called my fmd and he sent me to the emergency room. Like an idiot, I drove myself because I could get there (only 3 blocks away) in shorter time than calling an ambulance. Plus I didn't want to concern my children. So at 4:30 in the morning, I woke up my then 15 year old daughter and told her that I was going to the er for my migraine. I had just called off work yet again for a second day in a row and said I could not miss any more work. She expected to see me in bed when she returned home from school. What she found was her mother in the hospital with what they originally thought was a stroke. The CT Scan showed no hemorrhaging in the brain but it did show a small tumor in the pituitary area. My fmd did some inpatient testing that lead him to believe I had Cushing's. He explained that it was very rare and most times it is never detected but because I have always gone to him with everything, he had more clues than most drs. He did the 24 hours cortisol test. It was outrageously high. He and the others drs working on my case were wondering why I was still walking around. They thought I should be comatose at that point.
I guess I just won't quit no matter what. My faith in God keeps me going through everything. I had to fight with the insurance company to have my surgery done in another city because (as much as I love my job and my employer) our hospital did not have the equipment necessary to do the surgery. I would have died having it done here. So I went to a neighboring city where they had better equipment and my surgeon removed the tumor. I spent the next 2 weeks with the worst migraine I have ever had. Plus 2 more weeks off work. I then went back so that I could take the 3rd shift job. I have gradually gotten better. I still have trouble climbing stairs and everything seems to tire me out. But at least I do not have the diabetes or hypertension any longer.
But the fact remains, I will have to always have to have tests frequently to make sure everything is going well. My oldest daughter has already had preliminary testing done because she shows some early symptoms of Cushing's. My younger daughter also shows signs, but they have yet to do any tests. My fmd asks me every time he sees me how I am doing, or if any of the children show any more symptoms. It is believed by some to be a hereditary disease.
Yes, I have Cushing's Disease. My life sucks, but it is better then it was a year ago. Just as I was being diagnosed with this, I bought my first house. Thank God everything I needed was on the first floor, because I was never able to climb the stairs. The children have acquired the entire second floor for themselves. All four bedrooms are theirs. I have one on the first floor and all the other necessary rooms are there also. The only problem being the laundry is in the basement so the children have to do the laundry. I can't do any of the yard work so they also have to do that.
This is more than children should have to cope with with all the pressures children are already under with school and such, but mine take it like troopers most days. They just think of it as "life as usual". They shouldn't have to, but they do. I keep praying that I hit the lottery or something so that I can pay someone else to do everything (including pay my bills). But that is a fantasy. Maybe I am different than most, but I get through life without committing suicide because I dream big and think that it may just one day happen. It's the only thing that gets me out of bed some mornings. I wish there was more help out there for this, but there is yet to be any that I know of.
