I have had many illnesses during my lifetime, yet struggled and pushed on ahead anyway! I have no children of my own, but not for lack of trying...I am determined to not only live better with the MS but to overcome it somehow. I had a circle of friends and support people (and a husband) before MS and all but one or two left since the diagnosis. I have always been independent, and now (as my therapist tells me) I am hyper-independent.
Read on to get my Story in a Big Nutshell.
First off, I was abused from the age of 6 weeks old until 5 years old, with a lot of head injury. I don't really know what some of my illnesses stem from, so that is why I mention it. My first surgery was at 6 months old, for closed tear ducts!? At around 2 years old, I began having periods of difficulty walking or standing. I constantly took my shoes off, and complained of pain in my legs. Mom said they were "growing pains." This time period marked the start of bowel and bladder issues. Then when I was four, my urethra was way too narrow to pass urine, so it was dilated. Right around that time, I began having sleep seizures nightly. My mom called them "Out of body experiences." Then began my insomnia. It may have started because of the fear of sleep, or the abuse, or another unknown issue. To this day, I have some trouble sleeping, and dx'd with REM sleep apnea. At age 6 to 7, life should have been less stressful, the time "in-between fathers." We lived in a neighborhood with mostly African-Americans and a few Puerto Ricans. I was the only Caucasian on my block and at the school. Every day was a battle just to walk to school because I was different. So I got a lot of beatings. There is a definite pattern here, yes? The sleep seizures continued, but lessened slightly in frequency. (Note: I just discovered about a month ago that I never received any of the standard vaccinations children get. Measles, Polio, etc.)
Okay, father #2 came around age 7 and the abuse continued fairly regularly. I wasn't a bad child, I simply refused to talk, and was consistently in my own little world. Even my grandmothers treated me badly because I was such a strange little child. My parents (who didn't speak much English,) were convinced that harsh disclipline would "snap me out of it." From this time, a few family members and friends abused me sexually. (Still, my little secret.) My discipline was normally beatings all over the body and grabbing my head and slamming it against the wall, for the purpose of "knocking some sense into me." My symptoms continued during this time. My bladder issues increased, having to urinate urgently from about 8 to 10 times per day, and about the same during the night. And I still managed to wet the bed. By the time I would drift off to sleep, the seizure would come, and then it would be time to get up for school. On the weekends and during the summer, Mom would let me stay in bed until noon, to try to catch up sleep. In school, I was an excellent student except for the extreme shyness and fatigue, which caused my grades to suffer. I was very athletic (sometimes) being the fastest runner and sprinter. Ball sports were a different story. I got hit in the head and stomach a lot with any kind of ball. My vision was sporadically good. Also, there were periods where I couldn't run or walk very well. In my grammar school years, I had memorized the dictionary and the Encyclopaedia. I could tell you anything about words or about the world geography - sometimes. I do not recall anything about the 6th grade. I was deaf in my left ear for about a year around age 12. I have no memory of it. At 13, my first menses came, in class, with a vengeance. It was difficult, painful, and lasted 10 days. This was the case for every period after that. Never on time, and really brutal. Shortly after my first menses, I began with what turned out to be Fibrocystic Disease in both breasts. A harmless condition, but painful anyway. 24 hours a day.
The abuse continued, just as severely but less frequently. I left home at 14, at the incessant urging of father #2. Life got a little easier. The bedwetting stopped, (duh!) and my symptoms lessened even more, except for the cognitive and memory issues. Two or three times a year, I would have the difficulty walking and standing. Difficult when you're trying to work and support yourself. At 18, I had to have a D&C for the dysmenhorrea, after a 6-month menses, at which time I developed anemia. At 19 years old, I was beaten and raped for 6 hours. Again, more head trauma. I joined the Army shortly after that, and had two episodes of difficulty standing, and walking or running. My superiors suspected I just wanted an excuse to take a break - a very painful break - for about a month.
The sleep seizures continued, but got down to about 15 or so times per month. At 26 years old, I had a Tuboplasty, (correction of the fallopian tubes) due to infertility issues. By this point, I had 3 miscarriages and 9 blighted ovum episodes. After the Tuboplasty, unbeknownst to me, my thyroid had shut down, and the chronic depression moved in. The other symptoms continued about the same frequency. At 30 years old, I had another D&C, and was diagnosed with cervical cancer. My cervix was frozen, and all was well with that for a while. That same year, I passed 11 gallstones - naturally - at the emergency room, and with no medication! Owwww! At 32, I had a 4-day bout of crying - and I mean screaming and wailing. I don't know what that was about! At 35, the cervical cancer returned, and my cervix was frozen again. Later that year, I was diagnosed with Hashimoto's Thyroiditis. In ten years I had doubled my weight.
The depression by this point was absolutely dark and scary. I was also diagnosed with OCD, Borderline Personality Disorder, and mild Schizophrenia. I started therapy at 37 years old, which helped some, and sometimes. At 39, I had a tumor removed from my colon, and it was cauterized and I had no further problems with that. At 42 years old, I had a hysterectomy (T/A) due to large fibroids, endometriosis, adhesions and the original dysmenhorrea.
That was life-altering! Even just a few days after the surgery, I felt like a millions bucks! No more depression et al, no more odd pains, fatigue lessened substantially, great! I felt as if I had been given a second chance in life! I was telling every woman I knew beyond child-bearing age to run out and get the hysterectomy! I had finally gotten a handle on the thyroid thing and lost 85 pounds, and I went out and worked hard and partied even harder and just had a grand ole time!
Then at the age of 43, I got a job transfer from California to Las Vegas. Within 6 or 7 months, I had a great deal of difficulty walking and standing. (Did I mention - I never had a sit-down job. I like physical labor.) Then the cognitive and memory issues worsened, and these things began to affect my job performance. Pain was something I was quite accustomed to, but it got bad. My employers saw clearly that I was really trying to accomplish my work and do my best, but that I just couldn't anymore. After surgery on both feet for neuromas and bone spurs, at the age of 45, I could no longer walk, the pain in my entire body was so severe, and my short-term memory was ridiculous. It took five months to diagnose me from that day. The month after my diagnosis, my mom passed away from Cancer. And I loved her so.
All of this sounds, well, sort of unbelievable to some. But it was just my life. My normal, everyday life. I never required pity, I have never been dependent on anyone, I hardly complained. No one ever knew my struggles. I just accepted that this is my path.
I actually have a lot of accomplishments that I am proud of. I have been to 45 states and six countries. I am a published poet and writer. My vocals talent is recorded on an album. I sold one piece of art at a gallery. I have had 7 foster children, and even have two foster grandchildren! I finished High School, served two years in the military, attended and graduated from 3 colleges with 4.0 GPA. I sang on stage at the Shell Amphitheatre in Oceanside, California. I physically saved the lives of three people, two of them infants. I won a Halloween contest for sexiest costume once! I danced - a lot! I performed in several shows in Los Angeles. I rarely say no to anyone asking for help. I encourage people every day. I am committed to accomplish at least one good deed a day -and always have. I have talked people out of suicide. I translated for a student from Japan every day for four years until she received her Art School degree, including her dissertation. I speak a little of 7 languages and was fairly fluent in two others. I was a respite nurse for developmentally disabled children. I nursed my mom back to health after her stroke. I had my own Legal Documentation Business for a couple of years. I once went skinny-dipping in Key West in broad daylight and received applause and didn't get arrested!
My life has been all about treating people well and performing as many acts of kindness as humanly possible. My life has been FULL.
And just as soon as I can conquer this MS (or at the very least manage it well enough,) I am going back to school and then starting a new career. (Tysabri rocks!)
I am 51 now, and so begins Chapter Two.
Chapter One was a walk in the park compared to my current life.