Before You Donate
Think very seriously before donating to any breastcancer organization, or fundraising program until you read their Annual Report to see who their top contributors are, and if they have a product that appears frequently in the message the organization sends to the public. That would be unethical and its illegal. The same applies to a request that the public buys products, but does not receive a "donor receipt" for tax-deductible purpose. Read any and all food labels that breastcancer "non-profits" are promoting to raise money. Some organizations tell the public to help them raise money by asking you to visit their websites, but that only gives them "hits" to increase their sponsors.
Another tip, "signing" an online Petition is not acceptable, so don't fall for such antics. An ethical non-profit, or professional will not request your visit to their website, nor use "cookies" placed on your computer when you visit their site.
Purchase the Breastcancer Postage Stamp, the Post Office will always give you your charitable deduction receipt. Its a valid form of fund raising.
A Bit About This Website Owner
Now that I stuck my neck out and mentioned facing serious illness before, it is only fair that I explain my amazing life to my web site readers. This is only so that you will realize that I am not, and have not been the pillar of strength that some may think, when faced with serious illnesses, and more importantly, if I am aware of my own responses and actions when I faced a new challenge each time.
Firstly, did I learn from each experience? No. Secondly, what brought me to the conclusion that our bodies are scientific, and they must be viewed as such by ourselves, even when we're faced with a critical diagnosis that scares the daylights out of us. Last, I am no different than anyone else, save possibly for some rough roads traveled in life others may not have traveled, and having chosen a scientific health field education. The smartest decision I ever made.
Polio in the 1950 Epidemic
As the eldest of three, I had Polio in the 1950 epidemic; October to be exact. That put me in a rather compromised condition for many months, and the iron lung seemed to have had a long-term effect on me.
Meningitis
By January of 1952, fifteen months later, I contracted a vicious form of meningococcal meningitis, being exposed to Scarlet Fever in a Sunday School Class. I had a 106.8F fever for many weeks, was in a coma. All those weeks, I could hear my pediatricians as they made Grand Rounds talking about me, and I knew there was one doctor in isolation with me 24/7, doing spinal taps every 2 hours, then he'd leave (to run them himself), and return to me—Dr. Birch never left my bedside for weeks and weeks.
Upon returning home after meningitis, I had seizures, often couldn't breath, or move, or head a loud roaring sound then would fall into a dark abyss. I don't know what they were to this day, but I had these throughout my young adulthood, as well, especially when I was very tired.
To this day, I believe that those two experiences, being in a caring, expert milieu of a competent medical team, was the basis for my continued awareness that there are doctors who care, and that we, when we are very ill, have a right to seek out the people to help care for us, and feel most compatible.
I remember having one ENT who cared for me, because with Meningitis, my ear drums ruptured. He was highly respected in that well-known hospital back then, but not a kind person. On one of my return visits, when he tried to scrape a scab off of my ear drums (I was 12 years old), I shrieked and called out for my pediatricians (on another floor, of course). But, within a short time, one of them was at my side, and the mean bloke was "off the case." Thank you great doctors!
Coping with my recoveries actually took more out of me than I was aware during my youth. I changed dramatically after Polio—going from a red-headed Tom Boy, to a bumbling, clumsy, pre-teen, and the high fever of meningitis also thwarted my onset of puberty; thus, I was a good year or more behind my peers in many ways. Did I notice that? Yes, of course I did, much to my parents horrors. They did not respond well to their eldest being "behind" in her femininity. At one of my high school reunions, several of my male classmates told me that they would tell each other to "watch her--she trips easily" when I'd be going to a event or a dance. They were right, in fact, my husband used to say if hundreds of acres had one minute hole, or a rock, I'd find it, and fall.
From Polio on, my days of climbing 40' White Pine trees, and "riding" my two-wheeler, standing on the seat with my arms outspread, my red curls flying in the wind, were over, but I had no idea why. All I can remember was trying to not be a burden to our parents.
Surviving Abuse
Most of my childhood was fraught with severe abuse from both parents, but being the eldest of 3, I realized much later that I often put myself "out there," to protect first my younger brother (by 4 years), and later my little sister, 12 years younger than I. My only goal was to go to college, and get them out but they died of cancer at 19 and 24 respectively. It took me another 35 years to realize that I could not have prevented their deaths if I had been able to care for them myself.
Ruptured Gall Bladder at 17
Right after high school, I secreted myself out of the house, and one of the first independent acts I performed was to see my doctor about a constant pain in my "stomach," that had been going on for several years; "Dishpan fever" it was termed by my parents. With my summer job, I was able to go to the doctor for the tests he wanted to run. At that time, I learned that I had a gallbladder "about ready to rupture." Well, I at least knew what the pain was from, so I planned my first semester of college, by working two jobs, and living on my own. Nothing like knowing what was wrong to relax oneself. Isn't that half the battle for most of us?
So with instructions to "prepare a surgery date, and don't eat anything with cream, alcohol, or fats..." I went about my Type A life (learning in 2003 that most of us who survived Polio did so by developing a Type A personality--that I definitely did).
By January 1, the most intense abdominal pain I'd ever had with the "attacks" started, and I called Dr. Fallis, who was chief of surgery, who told me to get to the hospital, and he or Dr. Mc Coll would be there to meet me in the ER. Interestingly, my white count wasn't as high as the pain, but while on the stretcher outside of the operating room, Dr. Fallis came by and assured me that I would be going in shortly. I told him not to hurry because the pain was gone. That is all I remember until I awoke many hours later, with both surgeons huddled over me, trying to make me wake up. The upshot of it all was that I was "full of scar tissue, and dehydrated during surgery; we almost "lost" you, what has happened to you." I never thought about the abuse for a minute, but they thought I'd been hit by car! Leaving the hospital about three weeks later, as a couple of my organs remained there, I went on about my business: studying and working. Later, I learned that I had congenital gall stones, and the adhesions were from the brutality of being kicked for years.
Thyroid Problems Loomed
During my youth, I was plagued with a "low thyroid" but then they did a BMR breathing test, and mine was usually a -136 which shocked everyone, so I'd be put on thyroid, then when it came up closer to normal, I'd be off of it. I've since seen those records, and its unbelievable.
By the time I headed east for more education, marriage, and an eventual pregnancy, the infamous Dr.Thorn at Peter Bent Brigham Hospital, Boston, diagnosed this sleeping professional with Hashimoto's Thyroiditis (an auto-immune disease affecting the thyroid gland, no doubt brought about by the high fevers during meningitis). Once on thyroid supplementation, I began to stop sleeping almost around the clock my first pregnancy, and could continue with my career. The baby was born, all natural birth, very healthy, and an astute, lively daughter.
In spite of my obstetrician's warnings to not have another child after the 3rd baby was born, two more were born. I seemed all right, at least so I thought, but he cautioned us of the ramifications of Polio, and my need for rest. Mothers don't often think of rest, especially when they have healthy, happy, babies, and it seems so simple to breastfeed them. No work at all, in fact...
But, the fourth child had a very difficult time during birth, and with the fifth, six years later, my obstetrician, and colleague, detected a left pelvic deformity (from the Polio) in advance, thank goodness, so a trial of labor repeated going nowhere, a Caesarian Section had to be performed. One time only that I was not able to be anesthetized; I was awake, but paralyzed during the entire Section, until I 'passed out' from the pain. The baby? She was very post-mature, but amazingly healthy. Of course, I was swimming daily, racing my 2-wheeler against the "kids" in the neighborhood and winning, and caring for four children, and working.
Blindness Diagnosis
By 1977, when I realized I was going to be a single parent, one of my first thoughts was "get your check ups...there won't be two incomes to support the five children, pretty soon (and there weren't!)." So, going for my first eye exam, with an ophthmalogist friend, he kept dilating my eyes, over and over again. I wondered what could be wrong, but had not a clue what it could be until the fourth dilation when he came in, sat down next to me, and told me that I had an eye condition that will lead to loss of "at least your central vision..." but, he was going to take me to a renown retina specialist, first. We went that next week. However, on the way home from that appointment, I noticed that I could see every blade of grass growing on that city's freeway, every stone, minute bugs, and realized that I was going into shock.
Did I want to go through with a divorce, and be left along in my blind years ahead? I asked myself that many times. At the same time, I realized that my greatest concern was financial. I was leaving what for me was an economically comfortable marriage, with five wonderful children to care for, but each time I realized that if I stayed "for the money," I was no better than a prostitute, and the well-being of my family was most important, and I truly thought I'd have child support, and shared parenting to boot. How wrong I was in those days.
The retinologist told both of us that "at least you are the first person I've seen today I don't have to tell will be blind in six months, but..." then he told me it would 3-5 years, and put me on Ocuvite, a high antioxidant vitamin (I ate fresh veggies like a rabbit, however). I was told that someone in my family had to "have this, from childhood on..." but I had no idea about my paternal side of the family, and my father had a baby sister who died in infancy, and his brother was in a state veterans hospital for years. Of course, no one on the maternal side had "anything like that...its your father's genes (they were still married). So, I didn't look for the reason, I just prepared myself for vision impairment one day soon.
Fortunately, I had read for two blind friends in grad school, and when I told them of my diagnosis, one emphatically told me, "You don't need your eyes...the minute this starts you must take out time to learn to be blind...promise me you will do that." I did, and I did! Mary had been blind from birth, but was in the Peace Corps in Ecuador, worked on her PhD in linguistics (as I stumbled through reading Ketchua for her, using the tape recorded provided by the Council for the Blind). I stayed on the Ocuvite though, and never stopped doing what the retina specialists told me to do.
Hysterectomy
Once the youngest was in school, after years of "GYN symptoms," it was determined that there were questionable cells, and I underwent a hysterectomy, but "do not remove my ovaries," was my determined order to my surgeon. Upon awakening, he told me that he "just felt everything had to be removed; maybe we'll never know why, but it was something I just had to do." Needless to say, I wasn't a happy camper, but I did refuse to take supplemental estrogen, choosing instead to walk briskly each morning, and noticed I had only a few "hot flashes." Even the doctors in Gynecology kept telling me I wasn't aware of them; I had to be having estrogen withdrawal.
Post Polio Syndrome Hit With a Vengeance
That was 1981, and within ten years, I was worn to a frazzle. I was swimming daily, and in 1982, coming into the shoreline, I noticed I couldn't move my arms, so I turned and did the side-stroke. I had teenagers to care for, and a mortgage to pay, plus a younger child, in grade school. I didn't have time to be sick, but there were times when I was terrified something was going to happen to my former ability to "just do it."
After another near drowning episode, I went to my doctor, a woman from Canada. Thank goodness she knew enough to 1) research my history; 2) physically examine me, looking at my body, my reactions, and feeling my limbs, testing them, et al. "You've got Post-Polio Syndrome (PPS)," I heard her say, and nothing else except something about "the symptoms come back about 30-40 years after your Polio attack..." My God, I thought, that is behind me, it can't be back within me again!
I was referred to Baylor in Dallas, for a second opinion, and they didn't hesitate, nor do any invasive tests. "They aren't needed," I was told, "there is no question, the paralysis is returning. Your motor neurons are seriously impaired..." At that time, the only option was "Use it or lose it (today, its "Conserve to Preserve") and they shouldn't have told a Type A personality that was the only option because it put me on a wild path of frantic swimming, and going about like I was shot in the rear-end with a dart gun (that did come, but many years later, to slow me down).
Baylor put me in a support group, and an aquatic program (which I loved), but I could not cope with the support group. I was terrified seeing people back in leg braces, wheelchairs and, on respirators after years of being "without symptoms." I was certain it was all in their minds, and I wasn't going to let that happen to me. I just swam more, and harder, and jogged in place at the kitchen sink, trying to cope with raising five children, all in junior high, or all in high school at one time, besides the precious youngest, and all of their activities, to boot. My boot was wearing thin.
Thyroid "Cyst"
In 1987, I had a thyroid cyst that filled the huge syringe the endocrinologist used to drain it. His "emergency" orders to the pathology department were left in limbo, as he left on a three-week vacation. At that time, I went into Myxedema (very low thyroid), and spent several weeks just trying to raise my head off the pillow, but it passed, and my daily swimming seemed to be mandatory, to even remain awake past 7 PM.
I struggled with the fatigue, and weakness, for eons. In fact, by 1993 there were times when I couldn't step up two steps from the garage into the house. Finally, I thought that being on thyroid supplement all those years may affect my heart, and I'd read four journal articles on just that in the prior two years, so made an appointment with a cardiologist, certain that "system" was just fine.
Cardiac Exam
The very thorough, and understanding cardiologist did all the necessary tests, after I told him why I was there at my age, and he agreed. When I returned for the results of my tests, he asked me how long I had been "feeling the way you do...how have you coped with it?" I was ready to jump out of his office window, but it was only two floors up.
He explained to me that I had a left bundle branch block (nerve damage) in my heart, and asked me how long I had taken drugs. Drugs? I asked. Yes, drugs, he reiterated, and I began to read off the antibiotics, and thyroid I had taken that I could remember, and oh, yes, in 1958 I went into Anaphylactic Shock after a Penicillin injection (and didn't come out of it for two weeks!), but no, that wasn't what he meant. My heart pattern suggested long-term use of "street drugs!" No way, at that time, I didn't even know what Marijuana smelled like. I'd never taken anything.
Then, slowly as he explained more, it dawned on me. Our mother had MCP (Munchausen By Proxy) and gave my little brother and I Dexadrine (speed) throughout our school years, until I knew enough to spit it out as I left the house, but prior to that I counted steps, holes in ceilings, etc. for years and years, and was revved up beyond belief, but I didn't know why. That's it, he told me. Then, said I was in remarkable condition but would need a Pacemaker within 3 years, "just make sure they put it in the left side~" Lovely, going blind, losing my motor neurons, and will soon be bionic.
In that time, I had no alternative but to keep on going. I knew what I ate, and how I lived was critically important, and had raised my children on healthy diets, and few if any drugs, ever. But, when was this going to stop for me? I was embarrassed at times, but at the same time, I knew it wasn't anything I did, or caused, and I'd had enough biology courses from great professors to know that science played a great role in one's health, so until someone told me to stop, I'd keep on going, like the Energizer Bunny.
Thyroid Gives Up
By 1994, I was beyond endurance, and blamed the lack of easy access to a pool for swimming because I was traveling a great deal. But, a new symptom grew out of no where, and that was a sudden attack of syncope (feeling of passing out) that would come and go, just as fast, scaring the liver out of me. This went on for at least almost three years, and six doctors could not find the reason. I wore a Holter Monitor (heart monitor) for one cardiologist from Harvard for three weeks, without a blip, and kept swimming as much as possible, but when I did, my bones were throbbing when I climbed out of the pool, so I'd down a quart of grapefruit juice (should have drank milk!), but also, I still had to head for bed in what ever city or town I was in by 7 PM or I'd fall asleep at the wheel. Repeated tests proved nothing.
One day, I had literally screamed at an event, and noticed blood in my mouth. I'd been a soprano for years, and it wasn't unusual hitting a high G to have a bleed now and then, so I ignored it, but a laryngitis followed, without any other symptoms. I knew that laryngitis is a symptom of a very strong infection, so I rested, and generally took care of myself, but it didn't help. After about three weeks, I asked an RN to look in my throat, at a college I had a contract with. She did the right thing, felt my neck, and then exclaimed, "You have a huge hard mass right here, over your thyroid."
I immediately contacted the Chairman, and President of Parkland in Dallas, whom I trusted with my life, and he arranged for me to be seen in Nuclear Medicine by the Chairman of Henry Ford Hospital, which wasn't far from my location at that time. After three separate nuc med doctors came in and re-scanned me, each time, I knew their Solemn High Visits weren't for naught, so broke the silence.
There was a very hard mass in my neck that was most certainly malignant. It had to come out; no biopsy was necessary, just getting it out. With that, I called back to Dallas, and was on the next flight out. I did not want to die in the hospital where my siblings died of cancer.
What A Mess
The first hug I remember receiving in Dallas was accompanied by "Are you scared? We're going to get this out..." Another old friend met me for dinner that night, and just hugged me tightly in the parking lot of the restaurant, saying he'd talked to our Parkland friend, and "no one's going to let any thing happen to you." I agreed, but didn't count on the bloke doing the surgery.
Once I was opened up on December 12, 1995, they found that the Parathyroids were involved, and there were adenomas on the left carotid artery (that carries fresh blood up to my brain!). The Parkland Chairman was there observing, and told me their shock when they realized what was going on. Apparently, all my swimming, and resistance work in the water was keeping my blood calcium levels down, and in my bones, until surgery, when it spiked to close to 2000 (I still have that chart and must frame it someday).
That was the reason for the near fainting attacks the prior 3 years +, and the Thyroid was causing the loss of energy, making me swim harder and harder, yet my motor neurons from the PPS were screaming from over use. I was a mess.
Pathology Department Screws Up
The great parathyroid genius surgeon told me he didn't need to do a radio-active uptake post-op "because it was all benign." I argued with him about that, but he was adamant. That was the only time in my life that I went on with a doctor I was not in synch with, emotionally, or scientifically, and didn't believe he was paying attention to the real problems. Instead, during my three month recovery he was more concerned that he did not cause my lack of voice, and the repeated, enormous seromas (blood serum sac swelling in my neck which had to be drained repeatedly). I wasn't blaming him for these common side effects, and nothing I could say or write to him calmed this savage beast, but he would not do a radioactive uptake to be certain all the thyroid tissue was removed from my body. It often grows like seaweed throughout the upper body at least.
Father's Day, 1996
Back "home" in Dallas, I was enjoying a bright Saturday, driving on LBJ Freeway, planning on a picnic at friends home, when the next thing I knew I was hit in the back of my vehicle, by a speeding, red car, I saw only momentarily, before the hit. My vehicle rolled four lanes onto the grassy shoulder at the I-20 turn-off. That resulted in periods of finding myself lost, in my own neighborhood, or familiar places within the next month. I'd refused to go to the hospital, because I knew several people would be at the picnic, and I only wanted to go home, and rest (bad sign!).
Within two weeks I was admitted to Pate Rehab in Dallas, with a close-head injury, and had to start my daily work there with my own neurologist with me constantly, learning how to do everything over again, but in the "quiet room." Frankly, I knew what was going on, and yet I knew that I had serious gaps, like when one's computer hard drive is shedding. In fact, I couldn't even place 4" 3/4" bolts into holes in a gigantic wooden box, with their washers and nuts on them, using both hands, in the maximum time allowed. Worse, everyone else in there with me had very obvious head and facial injuries. Mine was all inside my brain, and at times, I had no idea where I lived, sometimes, didn't know my name, and unless someone contacted me, I forgot about them. That exists to this day; hence, my computer Monitor's Desk Top holds all of my mementos to keep me on task.
Five months later I was discharged, with "Strategies" to apply to everything I did, so that I could function. Or so I thought.
Mammogram Problems
I had been noticing minor problems with my right breast, feeling like I was lactating. I had to change cup sizes in a bra, in fact. I had asked the mammography physician to get a second opinion on the next mammogram, but she refused, say I just knew too much, and because my siblings died of cancer, I feared getting it, too. Right! On both counts. But, she would not budge at this great SW medical school, for two years.
In 1997, with my next mammogram due, I was determined to have two separate readings, so being in a new town, Austin, in fact, I called a well known breast-certified radiologist I knew for a referral of someone to read my next mammogram. I was planning ahead of time, and had all of my prior mammograms with me. In the short of it, he found a student he had in a course and gave me his name. I had the mammogram, and had spoken to him, and he agreed to do the 2nd read for me. The rest is on this website, but to be brief, I had two to three 3.4 cm and larger sites of askew, longitudinal calcifications in the right breast, that were only calcifications two years earlier.
Within a week, I was headed to the hospital at 6 AM, to leave a breast there, and begin a fight to life, once again. That was only because the first radiologist who read my mammogram diagnosed it as "normal," but was not a FDA certified breast radiologist, but a neuro-radiologist; thank goodness I had the back up.
The cell was estrogen and progesterone receptor negative, HER2 neu positive (gene expression), and with a sharp doctor's suggestion, I had NIH also review the tissues from the 1995 surgery on the Parathyroid and Thyroid. Malignant. That is when I learned to always have at least two, hopefully three, opinions on pathology reports, lean on the NIH/NCI for that information, and demand the best care one can find.
Chemo Then ...
Surviving a horrendous aggressive chemotherapy, the mammogram on the left, remaining breast revealed a "missed" mass, that had been on the prior four mammograms. There was some differences of opinions, but I had just come through chemo, and it was still in my nails, eyes, et al, and we proceeded as quickly as possible to remove the opposite breast, since there were four opinions pro and con. But, the experts my oncologist and breast surgeon in Austin had selected originally all agreed that we proceed quickly, and we did.
1999 Pain in Lower Left Rib Area
Before I was stabilizing from the chemo, and operations (10 in that period of time), with it all affecting the PPS, a PET scan evidenced the cancer in a lower left floating rib. I flew out to the former chief of oncology surgery at Hopkins, and the gamma scan evidence more than one rib involved, so he removed the three floating ribs on my left rib cage. That was a cinch, and he knew what he was doing, which made it all worth the effort, and SW Airlines had my ticket waiting for me, to boot!
This becomes embarrassing at times, but I did not cause any of this...not at all.
Second Closed-Head Injury
On my first holiday out of Austin, and breastcancer care, I was headed into Dallas on I-35 on a day I did not realize that the colleges were out for the holiday winter break. The road rage was incredible especially noticeable in the Texas A&M SUVs whizzing passed me, on the shoulders, cutting in and out, like maniac. Twice I stopped for a break, and then for an early supper, but just outside of Waco, Texas I only remember hearing a loud sound, and my car careening out of control, across the median, into oncoming traffic, at twilight. The next thing I knew, I was sitting in my car, soaking wet, freezing, with snow flurries coming down, and it was dark. Apparently, I was off in some wooded area for about 4-5 hours, and frozen, my body temperature at the ER was 94. In the end, that turned out to be a good omen, because it suppressed a left temporal hemorrhage, but little did I know.
Eventually, a lovely "angel" in Waco, from the body shop (auto body shop, that is), found my ID in the right door panel, and contact friends of mine in Dallas, who know one of my daughters. So, my youngest drove from Houston to pick me up, and bypass my days of seeing friends and parties in Dallas, and we headed west to her eldest sister's for the holidaze.
Poor child, she had brought me a new kitten in a carried, to surprise me for the holidays, so had it with her in the car, and later told me that I just looked at her and said, "I don't want a cat!" That was not me speaking.
Back into neuro-cognitive rehab, but this time, in Austin, and I had a few seizures, but could not get beyond the first level in my rehab computer work. I was wearing down by that point, and only could hope for better days ahead, but I have to say that my Team were all wonderful to me, and never once did I feel a burden to them, nor to the friends I had included on my Team. Those very special people were "just there," in the good times, the bad times, and the time I needed to talk about dying, death, and "where I was" on all of that.
Eventually, the vision did begin to diminish, but I made it from 1977 to 2001 before I ran smack into a car in front of me, but I had backed out through my garage door three times in 2001. My first call was to Texas Blind Services, who had a counselor ready to see me, and a RRT ready to help me begin to learn how to live independently, and as a "dis-ABLED® " individual, and learn to mobilize safely.
Swallowing Problems
The PPS really reared it ugly head during the new Millennium. Experiencing swallowing difficulties in the evenings, and horrendous pain in my legs, and left arm after attempting to walk, even ride, around a grocery store, leaving me with no way to get into my home once I made it back there, I was beside myself with worry about "Mets" and the cancer spreading. My Oncology GI surgeon did an EGD (scoped the esophagus) and told me "Its a severe lack of motility, its the PPS, I'm certain." He felt if I didn't see a specialist very soon, I'd need a feeding tube within six months. Great Scott! I thought, that is the beginning of the end...
I came upon a book by Dr. Richard L. Bruno, The Polio Paradox, and felt that I had found my home. My local doctors set up a consult visit for me in New Jersey, where they had moved from Mt. Sinai in NYC. One of my doctors recognized Dr. Bruno's photo on the book. They had done post-doctoral studies together at Columbia Presbyterian in NY under the same professor, and my local orthopedic surgeon could not get me to him fast enough.
One visit to the Post-Polio Institute really let me know what I was facing, and that I had a great deal of changes to make in my life, as well as my expectations. Learning to first stay on bed rest for a long time, I had no outside help at home, but believe me, I learned things I wish I'd have employed when I had five kidlets at home! I was worried about gaining weight without swimming, and being inactive. I didn't. The Type A personality had to be curtailed, and Dr. Bruno was available to me via E-mail, but always ready to ask me what I'd "done now?" when I complained of pain, fatigue, over-use symptoms, etc. I longed to just return to swimming, or bike riding, and had just ordered a tandem bike, even had my new helmet, but I knew the answers before I even asked. My life had to change.
I was grateful that my family doctor spent a long time talking to Dr. Bruno on the phone long distance, because he told me that he had never learned so much from a colleague in his career, so now, he's acutely aware of the PPS symptoms, and all the ramifications that change our lives, such as no surgery or anesthesia unless its life-threatening, and being especially careful with drugs, or even making sure that sleep studies are definitive. For example, I don't have sleep apnea, I have a drop in my blood oxygen within 10 minutes after I fall asleep, which required nasal oxygen at night, not a BIPAP, which drove me nuts, in fact.
To be brutally honest, I'm hell on wheels in a motorized wheelchair, with impaired vision, and my lovely home evidences the nicks, and holes from my 250 lb Jazzy motorized chair whamming into a wall, or worse, into me if I stand in front of it and don't notice it is on.
All of these things are just bad luck, IMHO. Granted, the child abuse is traceable to a cause, but its also bad luck. I didn't do it, nor did I do anything as a result of it, that I should be judged for, or by anyone for that matter. One does the best they can in times of life-threatening situations.
Do I do the best for myself when something crops up? Basically, yes, now, but at the same time we live in an interdependent world, and I've learned to be a wise healthcare consumer, one must maintain communications with ones healthcare team, and for me that means faxing them letters after a visit, or an email, to let them know how I understood their directives, how any changes in meds are going, how I feel, and any questions I have, within a week after each visit.
Concurrently, I try to stay informed via the Internet, at the National Institute of Health's website, or Mayo's or other valid sites. I've learned to use a white cane, but really can't balance very easily with walking being a "chore" to put it mildly, however, I'm determined to get to the Mall one day in my chair, and use my cane to "shoreline" along the store fronts, because I can see when there are people coming in front of me, if I "catch" them from the side, and if not, I'll notice their voices at each doorway.
Its the freedom, I miss, but I prefer this to the extreme that could have happened to me, and will one day. If we live long enough we'll have heart disease or cancer, unless its an accident, and those who are pushing life into the 100s must be terrified of something. At this point, I don't think about such circumstances, hoping if I don't make it, it'll be in my sleep, then I'll never know I'm gone. ;>)
Would I do anything differently, if I could? Yes, I would never have made the move I made in 2002, never, never, but again, I was not at all aware of the ramifications.
Otherwise, I'm not sure, really. I *sought out abusive, or manipulative people as friends, and mistook them for what we had in common, and erred in my assumptions as to my respect for them. I learned they were not deserving of my respect, and not at all like me, far too late, but at least I'm learning. In fact, when I look back, I 'see' self-destructive people, who are too lazy to seek out their own best options in life, to avoid conflict, or efforts on their parts, yet have a tendency to deflect their problems on to others at the most inopportune times. I guess that's a topic for the all-knowing Dr. Phil.
I used to let a lot of things "go" *due to my abusive background that would have been addressed much earlier had I not been in a "peace at all cost" mode for so many years, or "run before you're hit" programming.
At this point, I would not have worked so hard to do everything by myself, instead either passing it up, letting go, or setting mandates on friends, loved ones, et al, to either do or get over it. In fact, that is one of my most recent comments, now. "Get over it!"
It is my opinion that people fail to grow because they're afraid of setting their own boundaries because it may mean they'll lose a gaggle of old friends. Well, people cannot be friends unless they are equals. That being said, seek out your equals, as we should all be doing, and let those we've grown out of do their ways. Life is circuitous, and they'll come around again.
In the interim, I miss traveling, and swimming, water, the ocean,lakes, anything, a great deal, and hope to figure out how to take a Canadian Via Rail trip one day. They let us "dis-ABLED" ® take a guest free, and our chairs, and any medical equipment one needs. And, yes, I want to find a small abode that I can manage better in the condition that I am in, such as it is. That doesn't sound right, does it!
Thanks for reading this; I have left some things out, but for now, this is just fine. Email me if you have questions, or comments. I am usually receptive.