I just finished writing to ABC's Ex-Wives Club, since Extreme Makeover no longer seems to provide help. I can't retype it all again; I'm still in tears from the first round. This is my story, as told to Ex-Wives Club producers:
I had heard that Extreme Makeover was airing again, truthfully, but that doesn't seem to be the case, according to the ABC web site. I hope that you will read this, though, and consider helping me. Before hearing that Extreme Makeover was helping people regain their lives again, I still had considered applying to Ex-Wives Club. As I stated in my subject line, I truly am an ex-everything. I am an ex-wife, an ex-girlfriend, an ex-daughter, an ex-sister, an ex-aunt, an ex-lifelong-skinny-girl, an ex-healthy-person, and I feel like an ex-human -- but I can't do anything about any of it. I don't have the money, I don't have the equipment (I don't even have teeth I can use!), and I don't have a way out of the house to try to do much at all.
I'm not clinically depressed, but I do have severe situational depression, and if I "woke up dead" tomorrow, it would not be a bad thing. I used to be afraid of death. I'm not anymore. I feel like I have no future. I firmly believe that anyone in my situation would feel exactly the same. I do see a psychiatrist, both for lifelong panic disorder and for the situational depression, but while I remain on anxiety medication, Dr. I has never prescribed an antidepressant for me. I am handling -- everything -- as well as can possibly be expected, and an antidepressant is unlikely to be helpful. Nothing is likely to be helpful, and nobody is likely to be helpful. I have contacted various people, various charities, and even various churches (the latter, for prayer and guidance only), and have been ignored. By all parties! Yes, even by the churches. That's probably surprising to you; I am still surprised by that as well.
Here is my story: I was divorced from my singer/songwriter husband in 1991. (He and I had no children.) That was also the year that he had an album released by Sony/EPIC AND remarried as well! I received little to nothing in the divorce. Also that year, I admitted myself to a hospital geared toward helping patients with agoraphobia, which I had at the time. After six weeks inpatient, I left the hospital free of the agoraphobia and the majority of the anxiety. I did a number of TV news interviews and medical segments, spoke at conventions, and led self-help groups. I was not overweight, but in late 1996 (not long after my ex-husband died of cancer), I started a diet and exercise program, and at age 34, went from a size 7 to a size three. Through a mutual friend, I met a very nice guy named Bob and moved in with him in 1997, just before my fibromyalgia and chronic myofascial pain became so severe that I was barely functional. I was in pain, in tears and exhausted before I even made it through each morning! Bob convinced me to quit my job, and promised that he'd take care of me. He has, as best he can, even though we are no longer romantically involved. He is, basically, the only friend I have left anymore. He is the only "family" I have left anymore. I had to FIGHT to get Social Security disability, but eventually, I got it. I've had to FIGHT for medical care (under Medicare/Medicaid), and sometimes I've received it, and sometimes -- I've hit nothing but years of negatives and dead ends.
Beginning in 1998, when it became obvious that my TMJD (temperomandibular disorder) was more than severe, I had a second and then a third surgery in an attempt to lessen the pain, to stop my jaws from locking, and to make eating less of an ordeal. The surgeries were progressively invasive, and the third surgery involved titanium implants on both sides of my jaw. Bob was my rock, and stayed by my side throughout the surgeries. (My "family of origin" were as unhelpful as they could get away with. They had never believed that I was in any significant pain from anything, and accused me of being a "malingerer," a "hypochondriac," a "junkie," and a "drug-seeker." Their beliefs have never changed.) In spite of those surgeries (or perhaps partially because of them?), my lifelong chronic headaches worsened, and my bodywide chronic pain became more than unbearable. I spent every day in a fetal position in my bed, in agony and in tears -- even though crying worsened my headaches. Local physicians were of no help whatsoever, my medical files were tainted (my mother was an emergency room RN) with notations of my being a "drug-seeker," and the only relief I had from agonizing 24/7 bodywide pain was wine. I would allow myself to have enough wine to kill the pain and knock me out four nights per week. The rest of the time, I had to "deal with it."
I was becoming more and more suicidal by late 1998, and finally begged an "Internet friend," author Dr. Devin Starlanyl (and fellow sufferer of fibromyalgia and chronic myofascial pain) for a referral to a pain management specialist ANYWHERE NEAR ME. She referred me to Dr. B, two states away, who is also a specialist in fibromyalgia and chronic myofascial pain and related disorders. Bob drove me to my initial consultation with Dr. B in October of 1998. Dr. B was amazing. Not only did he believe me, but without my telling him, he was able to tell me where I hurt the most! I was so relieved not to be belittled, disbelieved, and put down that I sobbed uncontrollably. Bob drives me to see Dr. B on a monthly basis now. He used to see me every three months, but thanks to the DEA's "War on Pain Patients and Pain Management Doctors," he's had to increase our visits to once a month. My pain is better now. (It's not gone -- not by a long shot. But it's far more bearable.) Plus, with Dr. B's help, I quit smoking (after 25 years) on January 26, 2002. I also eat healthier, although it's extremely difficult, for reasons I'll get into in a moment. My mother, the RN (and recently ordained Methodist minister, which is too strange for words) despises Dr. B, having never met him, because he "gives me drugs." Since the rest of my "family" listen to her, they all believe as she does. None of them are grateful to him, or happy for me, that I no longer want to give up, curl up, and die from the pain alone! They also despise Bob for taking me to Dr. B!
In early 2000, I had a consultation with a nationally-known, prominently-featured neurosurgeon, Dr. R (also out of state), and was diagnosed with Arnold-Chiari malformation. After decades of debilitating headaches, and accompanying nausea, that NO ONE believed I had, I suddenly had a reason for ALL of it! I had an actual diagnosis, based on a neurological exam and MRIs! I had more tests, which indicated more related medical problems and diagnoses, and the recommended course of treatment was surgery. Brain surgery. I was scared to death, but I had the surgery. During that surgery, once the neurosurgeon placed his scalpel to my dura, years of backed-up cerebrospinal fluid (CSF) shot out of my head, splattered the O.R. staff, and then hit the wall! (I'd think THAT would cause some nasty headaches.) Did I receive an apology, from anyone, for decades of disbelief, accusations, and name-calling? Absolutely not. And although it was made perfectly clear that the surgery was to halt further degeneration and would not reverse damage already done, my "family" expected me to be completely pain-free and "all better!" When I wasn't, they (my mother, and then on down the line) became even angrier. My constant companion and best friend of 14 years, my basset hound Priscilla (my now late husband, Keith, gave her to me for a wedding present), had died after I had that surgery, which traumatized me even further. Even though I was not ready for another basset hound, and told everyone so, my mother persisted and drove Bob and me to a basset hound breeder to see a new litter of puppies. I'm a dog person, and especially a basset hound person, and when I saw those pups, I melted. We left with one I'd fallen in love with, but I couldn't bring her home -- and my mother knew that! I'm involved in basset rescue, and had rescued a pup that had turned out to have parvo, and she had died from it, despite the best in vet care and surgeries for complications. The parvo virus remains alive and active for two years, so until Piper (the new pup) had had her shots and was immune, I couldn't bring her here. She stayed with my parents, but my mother demanded that I be there (on the other side of town) first thing every morning to take care of her, so my mother could sleep. I was still recuperating from the brain surgery, and should have been in bed. Instead, I was caring for a new puppy and my mother's two dogs. It took its toll. After about six weeks, I lost my balance on the way to the car and tumbled down their gravel driveway, smacking my head along the way. My Chiari symptoms returned with a vengeance.
I returned to Dr. R, had more tests and MRIs, and was told that I needed another surgery. However, due to genetics and side effects from medication and grinding and clenching my teeth (TMJD-related), my teeth had lost all of their enamel and had started crumbling apart, and my mouth was teeming with infection. I couldn't undergo more brain surgery until that was remedied. Somehow. But I had no -- and I mean "ZERO" -- dental insurance that would cover what needed to be done. I lived with crumbling teeth and severe infection in my mouth for over a year (my parents and sisters refused to help, and Bob couldn't afford it), and by the time I saw someone, it was recommended that ALL of my teeth be surgically removed. I would need dentures, which Bob and I couldn't afford, and my "family" also refused to help me with, so it was put off until Bob could save the money, or receive a loan, for everything. In late 2001, my teeth were surgically removed in a hospital, and I received "immediate dentures." I wasn't even 40 years old yet. My gums took forever to heal, trying to wear the dentures was more than painful, and I couldn't have felt more unattractive if I tried. The dentures never did fit correctly, I tried every paste and reline-in-a-tube and temporary fix known to man, and they still didn't fit. I sometimes wore them for looks only (eating with them has never happened), but it took massive amounts of denture gel to hold them in, and my top denture habitually pulled off all the skin from the roof of my mouth upon removal, which caused unbelievable bleeding! I've had the dentures permanently relined twice now (Bob paid for both relinings), and they still have NEVER fit. I've found a hard-to-obtain denture paste to hold them on for looks only (still!) that doesn't cause the skin on the roof of my mouth to be yanked off and bleed like crazy. However, I can wear them only for short periods of time; otherwise, it aggravates my TMJD and my headaches, and I become more miserable than usual. Which is saying something!
In late 2002, I had the second Chiari surgery. It was a gigantic mess. Dr. R had nicked a nerve, which caused my chronic pain to worsen more than I had thought possible. But the first problem was my being released without understanding my medication dosage schedule (a P.A. had rattled it off to me when Bob was getting the car), and without my being ready to be released. I could tell there was something wrong. Bob and I stayed with my best friend in Asheville (she and I have also since lost touch), waiting for me to feel better, but it never happened. Bob had to get back to work, and back to caring for his ailing and aging mother, so Bob drove from Asheville to Nashville while I threw up in a plastic hospital bag the entire trip. I tried to tell everyone that something was wrong, but I was accused of over-worrying, and everyone insisted that I was "mending normally." There were about three local ER visits where I received a TON of corticosteroids, which I don't respond well to. Then one morning I woke up and Bob wasn't upstairs, so I tried to use the phone to call his cell. I couldn't remember how to use it! I then tried to use my cell phone. Same problem. I then tried to place a call using the TV remote! Bob came upstairs, and I flipped out on him. I tried to explain the problem, but my speech was -- impossible to understand. I couldn't get words out of my mouth to save my life! I was scared to death. Bob was scared to death. So he drove me to my parents' house! (My mother IS an RN, after all.) But she spent all of that day trying to get me admitted into detox! No one would take me, because my problem was MEDICAL! But she tried every connection she had to get me into detox that day! Instead, I languished in a guest room in their house, ignored and even yelled at, for some period of time. I can't recall; I was not "all there." Eventually, Bob picked me up and took me back to Dr. R. One of his P.A.s immediately took me into an exam room and started squeezing pus out of my surgical site. I remember THAT because it HURT! Then I was re-admitted to the hospital there in NC. I don't remember much after that except for hallucinating. My infection had spread from the incision site to the brain and then became systemic. But no one had believed me when I told them something was wrong. Long-distance calls had been made, at my insistence, from my mother to Dr. R, and everyone said all was "normal." I knew better, for all the good it did me. I have no clue how long I was there, but I do know that Dr. R lost his medical license in the month following my second brain surgery. Legal action is still pending, in my case and cases brought by many former Dr. R patients. My attorney alone has about 25 of us.
Since I cannot drive (neurological problems, pain, and medications), I depend on Bob to take me anywhere I need to go. I live in my bed, out of necessity. I might be able to do more, but I don't know, since I need to be supervised and Bob doesn't have the time. In early 2003, I cut off all ties -- such as they were -- from my "family." My psychologist more than supports this. (I haven't even begun to get into how I was mistreated, used, and ripped off by my supposed "family.") I am completely alone, and have no possible means of meeting anyone new at all. I am so far beyond lonely that a new word needs to be coined to describe how I feel and how I am. I've tried meeting people via the Internet, and it has never had a favorable outcome. I "met" two guys; one used me as a bank, despite my being broke and living on disability. The other was verbally and emotionally abusive. The second guy, when I broke up with him, told me that I would NEVER find anyone to love me because I am "ugly, fat, toothless, and never leave the house." I have gained weight. I now have 1 1/2 "outdoors outfits" (one pair of sweat pants, one sweatshirt, and one short-sleeved gray shirt) that fits, and it's falling apart now. I am now in my 40s, and can't do "normal" exercises, so I can't fit into my size 3, 5, or even 7 clothes. (I live in pajamas, which also are falling apart.) I can't possibly afford new clothes. Bob is always after me to get rid of my old clothes, but I can't do it. I keep thinking I'll be able to wear them again. (They're all "classics," as I never indulged in "trends.") But in order to diet, I need to be able to eat properly, which I cannot do without teeth. I can only eat soft, creamy foods. How many of those are low-calorie and healthy? Can you think of any? I can't either. My hair is a nasty mess, and I can't afford to have anything done to it. I've tried coloring and cutting it myself, but it's been a disaster. I posted a semi-recent photo on dating sites, and have only been rejected time after time after time. I have no one, really, so I almost welcome junk mail and junk email. I couldn't talk with new friends or -- heaven forbid, a "boyfriend" -- on the phone because I'm too difficult to understand without teeth. I go days at a time without speaking at all, because there is no reason for me to speak.
When I was younger and healthier, I spent a lot of my time helping abandoned animals, people with panic disorder and agoraphobia, chronic pain, and even botched brain surgeries. I still do what I can over the Internet. But no one -- NO ONE -- has any time or inclination to help me. I don't understand. I don't understand why even CHURCHES can't return an email or a phone message! What happened to karma? (My parents have paid for an addition to their lake house, Cadillacs, and extensive work in their backyard, including a large jacuzzi.) I am miserable, I am sub-human, and I need help! I have no desire to live like this! WOULD YOU??
I want to be optimistic and believe that I'll hear back from you, with a favorable reply, but -- please forgive me -- it hurts to believe anymore. It hurts to trust anymore. It hurts to live anymore.