You learn to take the good with the bad. I guess trying to stunt the growth of the optic nerve tumor and make my vision better caused more problems than I had anticipated, not only with my eye but throughout other areas of my body. The snowball occurrence began with my high-dose steroid use back in mid-April. It caused my kidney function to deteriorate dramatically and my creatinine to rise from 1.2 to 2.4, causing water retention and increased blood pressure.
As I decreased my steroid dosage from 80 mg to the present 15 mg, my vision has only worsened, and is worse than it was prior to the start of the drug use. My best vision was when I was on 30-40 mg of Prednisone per day. That dose is too high to take every day as it comes with many side effects, e.g. brittle bones, shakiness, inability to sleep and concentrate, diabetes, weight gain, muscle atrophy, easy bruising -- and every side effect it causes, I have, and I'm now taking oral diabetic medication.
After starting the drug, my muscles that support my uterus and pelvic organs atrophied, which caused there to be a pressure and less blood flow to my left leg, which caused a blood clot behind my left knee. I have a complete popliteal clot and I tried and failed using blood thinners because I have a blood clotting disorder, so I've been told I will probably have this clot forever and to try to remain active. If it ever should break apart, at least I have a vein filter to catch it that was installed in Maui. My leg will be swollen for the rest of my life and it will only get worse. I'll wear special stockings in the winter (too hot in the summer) to help the blood flow so the swelling doesn't get worse.
The drug used to treat the blood clot (injectable blood thinners) caused me to hemorrhage abdominally in Hawaii. Unfortunately, I am in a worse place because I was told I'll need a complete hysterectomy and ligament/bladder repair. I have a very severe prolapsed bladder and uterus that worsened with this course of steroids and requires lifting my ligaments, putting in a sling, and lifting the bladder so it will empty normally. The prolapse started after my brain stem surgery in 2009 and is now grade 4, which is as bad as it gets. My organs literally hang out of my body by about four inches, which has required me to frequent uro-gyne doctors since returning from Hawaii.
In addition, I've been to my internist three times in hopes that my blood pressure and lab work for kidney function, hemoglobin, and creatinine will improve. He thinks my blood pressure will improve as I get off the steroid because I'll be retaining less fluid.
I last saw my eye doctor about two weeks ago and he told me that he sees nothing different when he looks into my eye, but when I read the eye chart, I am not able to read two lines that I could read the last time. There might be slight changes going on in my eye that he is unable to see, but I can tell there's a change. My vision has gotten darker and more blurry, with less color and more shades of gray, although it improves somewhat through the day. I'm getting headaches all the time because my vision is changing all the time, which is aggravating. My next appointment is in another 2-3 weeks. Nobody has any ideas as to what I should do. Back to the drawing board. But, oddly enough, I noticed my vision improved when I was in higher altitudes. The day I flew to Hawaii and the day I flew home, my vision was the best it's been. Perhaps I should become a flight attendant or move to the mountains.
Until my hemoglobin returns to normal and my body goes back to baseline, the surgeon will not do the hysterectomy or any gyne surgery as she feels I'm too high of a risk. So I'm waiting for my body to get back to normal. In the meantime, I'm focusing on getting to see the guru eye doctor in Michigan and another in Philadelphia.
Also, I continue to say my prayers and have been blessed by several different healers. This past Monday I went to see a man named Father Peter Mary Rookey. The 95-year-old Priest was blinded at the age of 8. His family and parents prayed the rosary for several years daily, and one day he woke up and had the gift of sight returned. He had lost his vision as a result of a firecracker blowing up and damaging his eyes and face. From a doctor's perspective, he should not be able to see. To this day, he can read fine print (e.g. the phonebook) without the use of any reading glasses or aid. Once his vision was restored, he gained the gift of healing and has healed many people, even the blind. Lori Pritchett and I saw him this past Monday and received his blessing on our oils, candles, books, religious medals and miracle prayer, and had a semi-private three-hour visit with him. I feel blessed to have met someone so holy as he, and can only pray that I receive his healing.
I hope you're all enjoying your summer and trying to stay cool. Only 24 days until school...
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