HOPELESS *This post is about where I'm at right now & how I got here; it's VERY long but I'm desperate; I have Asperger's & I only have so much time where I can physically type to edit myself, otherwise, this would be MUCH, MUCH SHORTER; I can't stress that enough; anyone who reads this, I'LL THANK YOU FOREVER**"
I have had 4 spine operations that dealt with all areas of my Cervical & Lumbar areas. I was born with a lot of birth defects because my mother had chicken pox whilst pregnant with me and it was at the time my neurological immune system was developing. They have confirmed Congenital Varicella Syndrome by how much of the disease is in my spine since birth and the birth defects were related to a bad case of Shingles because by the time I was born I was technically past having Chicken Pox. But to make matters worse, I really favor my father's side who has all these major neurological anomalies. It really doesn't matter how I got what I got except I had parents (who I love dearly) who weren't capable of helping me. My mother was proud of being anti-social. She is not comfortable being touched. My father who started as a severe toe walker and stutterer and then lost his ability to walk in his 50s, was too proud to act like there was ever anything wrong with him. It's not that they didn't believe that genetics is important when one's offspring was sick, it's just that they needed black & white proof from the FIRST doctor, then it was dropped from there. They did belittle if one complained. I had an amazing older brother (only sibling) who looked out for me and we were very close just because we had a mutually beneficial relationship too (we worked together). He was very healthy like my mother - except for eccentric ways, which were more than fine as long as it didn't hurt others - but my brother did well socially. It was always a 'joke' that I inherited the problematic genes and he got the opposite. I wasn't a problematic child behavior-wise as my parents would tell anyone I was extremely obedient. I rocked really badly in my crib and continued for some time (I used to be too embarrassed to share this) and used to be punished severely for this. It was the only way I could control being overwhelmed, which didn't seem to take much. I didn't know better and was scared to death of my father as he would beat us (not just spank us) if we stepped out of line, especially if it embarrassed him. He was a proud veteran who had a very rough childhood being brought up by immigrant/1st generation parents who had to flee to the U.S. as a result of what led to WWII, even though they were Catholic as a great deal of it was taking place in their country similar to Ukraine (one of his parents had a wealthy background that allowed him to be born in the U.S., but went back to his country as it was thought he would have a better education there - I know he certainly learned was fluent in 5 languages when I met him; so he already had dual-citizenship but like a lot of people who flee during chaos in their country, didn't have a penny when he came back to the U.S. to start all over again; oh yeah, he also lost his ability to walk in his 50s & so would one of my father's 2 sisters but surgery saved her from that fate unlike it did for me...it made mine worse because the stability & the pain are worse and now I'm falling as much as my father did only after he was in his 70s).
I'm so sorry for the length of this but I should mention that one of my other major problems (I found this site because I have felt so hopeless about not finding a way to survive with Failed Back Surgery x 4 x 2 areas and that I was diagnosed with Asperger's when I was 4 - in 1976 - but the only help I got was speech therapy from pre-K until I graduated from High School). I did go into a career that at a time was good for someone like me (CPA/Accountant as I excelled in math but one doesn't really need to be really good in math to excel in that field; I guess it was the comfort being around numbers), but where I felt I needed to reside it got way too political for someone like me to handle. Though I worked 50-70 hrs for a good 20-25 yrs, I hardly made any real money because I had a hard time figuring out my worth. The kind of situation I found myself in ended up being like Sales, as there weren't any big companies with an accounting department where I lived, which would have been the kind of fit I needed. When I graduated from college there were a few prestigious firms that could have provided more stability that was recruiting, but I didn't know I wasn't allowed to be a single parent, which I was by then (I started college right after high school as there wasn't any dual enrollment then, and then I returned when as I could pay for it because my parents weren't going to help my brother and me with college even though they lived in a 4,000 square foot house in a golf course community for at least 15yrs by then; they were mad that my brother didn't want to follow my father's footsteps as far as how high he got in Amway, which I admit did help with the purchase of that house but at a price where my brother & I only saw our parents less than 10hrs a week, but it did include church so there's that). Speaking of my beloved brother, he was killed in an auto accident at about 6mos. after I graduated from high school. My parents were devastated (as he was in a coma, I stayed by his bedside day & night the entire time; he was declared brain dead early on but I was determined to see any movement to prove otherwise). My parents were trying to have another child. If it was possible, we drifted apart even more. I ended up with my ex-husband (who died in 2020) as he helped me a lot with getting my medical needs met, especially as the migraines that I had since age 6 (I was struck with the back of a steel hammer then) got worse where I would often faint. Soon after my birth, the doctors diagnosed Bell's Palsy, which was thought that it was caused by Chicken Pox as the virus attacks the nerves, but growing up I also heard I had another type of Palsy (something that was a mild form of Cerebal Palsy) where I had the most painful spams. It wasn't followed up with but it was brought up a lot by several doctors and just left alone except for spasticity medicine I got once that gave me great relief. My ex-husband helped me have this ongoing treatment and took care of all my migraines as most of them required injections & if I caught them too late, a trip to the ER for a subcutaneous IV treatment to 'break the cycle' especially as I also developed Cluster Headaches (also Occipital & Trigeminal Neuralgia type, and many other things that could aggravate/trigger but I'm trying to keep this as simple as I can because being at the Univ. of Miami University Hospital in-Patient for long-term studies just to hope for the best treatment, I got a lot that I was 'diagnosed' so I go with what I'm consistently told; if I had it my way, I would only see a Doctor once a year for an annual check-up & THAT's IT). I had some issues with my eyes that made my astigmatism off the chart (10.5 diopter), also subject to overall diseases of the cornea, and my Bell's Palsy caused one of my eyes to hardly produce tears that caused a lot of damage to my retina too, so I had two sets of eye surgeries as my eyes were rejecting the only custom made Toric lenses and releasing some sort of white liquid protein in the process (I forgot what they called it). And, I needed two bilateral jaw surgeries (nothing to do with the typical TMJ as I didn't have any popping & clicking...it was displaced but I did learn all about TMJ - or more correctly, TMDD - after the jaw surgeries) & two sinus surgeries (the latter still has to be finished to this day)...I don't know why everything always is done in two surgeries. When I was born, my nostrils were almost completely closed and barely opened until I had those surgeries that allowed me to blow my nose like a normal person. My ex-husband helped me with ALL of this. We had a beautiful daughter together. When I had heard, I was working full-time at a Fortune 100 company as an Assistant to the Controller and finishing college (I became eligible for 'Independent Status' when I got pregnant, which made me eligible for Student Loans, as at least back then, one wasn't independent until they were age 24 whether they lived with their parents or not). After my daughter was born, I resumed working full-time and was lucky to find an excellent daycare for my infant baby girl (I still call her 'baby girl' to this day, which she likes). I was a workaholic where my husband was losing his place. After 16 yrs, it ended badly due to his anger issues and jealousy of my success (even though I wasn't making a lot, I had the potential & I had come a long way). I ALWAYS gave him credit for how he helped me and even though I ended up buying most of everything we had, I didn't tell anyone (like if it was a car for him, it was his car). If we ever got a divorce, we live in a 50/50 state and I had no problem splitting it because if it weren't for him, I wouldn't have done so well. I guess he felt that he helped me with my medical to the point that he deserved everything so when he did something so damaging that my daughter and I had to leave for our safety, he not only broke most things, he took everything in the house including my personal belongings, wiped out all bank accounts (I had one for our daughter's college fund), and maxed out our credit cards (even though it was through my credit). Again being a 50/50 state he was supposed to be half liable since the debt occurred during our marriage, but my attorney couldn't find him so he never had to give one cent, and more importantly, he did nothing for our daughter. I asked for parenting classes for BOTH of us because I'm accountable for being a part of this marriage, and of course, not beyond help, but I did want to know he would be safe for our daughter as I had black & white evidence to be concerned. He never visited with her, never even sent a birthday card to his once 'daddy's girl.' As a lot do, he moved on and started a new family with a woman who has MS. Thankfully, she is running to this day and is sharp as a tack. They had 3 children together and I'm happy for my daughter to have (3) 1/2 siblings. (or 3 siblings as who cares about the 1/2). There wasn't any overlap between when he was with her and when he was with me, and I know that for sure because she was living on the other side of the country. Plus she was age 15 so he met with her when she moved back close to where I live (where she grew up), though now she lives in SC, and soon after they met she got pregnant with his 2nd daughter. Her father is part of a biker group, similar to the Hell's Angels, and he would have killed my ex if she was younger than 18. So I feel pretty good that he was not cheating on me, at least with her. Now she's 39 (as I'm a little under 12 yrs older than her; my ex-husband was 7 mos. older than me). As I said, my ex nor ner ever contacted my daughter until he was in a coma in 2020 coincidentally due to a failed Cervical operation but in his case, he couldn't breathe and lost consciousness. I was with my daughter as she had to do online college courses involving math during COVID and I was helping her when she then received a call from her stepmother who said something to the effect, if you want to see your father again then you better come now. (By the way, I ended up giving up my house to help pay for my daughter's college; funny enough, my mother wanted to help her as well and people told me to let her but I'm not used to that or getting help in general so I wrote a contract with interest on the payments that will give my Mom the money back; I did give her a house to rent or sell as she was interested in that where she & my father made $175,000 off of it within a year because I believe in giving to our parents as they get older; they were in their 70s and she had worked at hospitals in her chosen field since her 20s & I wanted her to retire as my father did as well because she said she still needed to make more money; my father was able to walk with help and always loved to travel & so did my mother but kept putting it off; I completely respect her for her work ethic & stability, and always suspected that she needed to work because it gave her self-worth, which proved to be right later on, but my father ended up being diagnosed with Lewy Body so that never got to happen; she is enjoying her retirement by spending all of it with the granddaughter that itoo physically painful for me to hug now & I'm happy for my mother but she wants to be her ONLY grandmother while my father has survived beyond the prognosis - I feel like he has Alzheimer's myself - and she's now too busy for my father because she has to watch her great-granddaughter, so he's been alone as far as her & I'm trying to get well so I can help before it's too late). She was devastated but wanted to go and I fully supported that. To give an idea of how my mother is, she asked my daughter, 'why do you care?' I know she was referring to the fact that he hasn't been in her life but even though my mother says I'm always negative, I usually hold out hope and in this case, I was always hoping for my daughter's sake that her father could possibly 'calm down' with age where they could have a relationship or at least she could have some closure because obviously, that whole situation has been hell for her. Back in the 80s, when ADHD was new, her father was diagnosed with a severe case. He is what is called a 'military brat' but those bases are strict, the hospitals he went to were known as thorough, at least where children were concerned. And boy did several hospitals from around the world do a huge write-up on him where all came to the same conclusion. And my daughter was diagnosed with ADHD over & over where the parties didn't know each other as I felt ADHD was becoming a little overdiagnosed like many conditions in my personal opinion. Anyway, my daughter was requested to be there because her father & stepmother weren't legally married and my daughter was the only legal next of kin who was an adult. Her stepmother was suing the hospital and just won. I just have mixed feelings that my daughter was called in that way for the first time in over a decade (she briefly got to see them when she was 16yrs old by happenstance) to see her father non-responsive in a coma. I know she's been devastated not only by losing her father (what could have been; I never did say anything negative about him to not alienate him as I'm also not the judge nor the jury to do so) and by what transpired right before he died. I don't know how to help her. I tried hard to help her in any way I could when her father stopped being in her life the first time. i even tried Big Brother even though she was a girl. My daughter is one of the few people I know that does not like to talk about ANYTHING so during any counseling sessions she has had while growing up, she never wanted to open up. She behaved very well, did good in school, she had a lot of friends and outside activities so I knew that was at least a good sign. She didn't need help with her ADHD until college and it was only as the courses became a little tougher for her. She ended up with a great match for a husband (my mother looks at his parents like they're some sort of celebrity as the father to my son-in-law is a very successful civil engineer, and that's a big deal where we live). My son--in-law's parents are within 10 yrs of my mother's age as he was adopted and since I had the failed back surgery, they've lost total respect for me. They knew I had a good career but I had my first operation when my daughter met her husband, and they got married a year later because when she met him he was going to join the army in the next six months. She ended up moving to where he was (Alaska, which has a great University there). and then they got married. My parents got married after 6 mos.of dating (I waited a LOT longer despite feeling the need to leave right after my brother died at age 18 & moving in with my ex-husband, as we waited for 3 yrs trying to do everything right despite the circumstances). I only say this because now I personally feel - at least in my case - like I need to do a background check. Joining the army was a good sign, though my ex-husband tried to join several times but couldn't due to his medical record. Anyway, it worked out for my daughter thankfully. I always want to show that I believe in my daughter (which of course I still do) and to tell her I love her as much as possible. She noticed at a young age that our family (my side) doesn't do hugs & I'm trying to change that but it's a little awkward. She is naturally affectionate. She and her father are the types who have to be around people 24/7, though as my daughter gets older, she has told me she now enjoys some alone time, she will not give up going out once in a while as compared to her 'home body' proud husband. She told me I'm a lot like her husband so to me this is a huge compliment.She and her husband have the type of relationship that most would envy as they communicate about EVERYTHING. They certainly are each other's support. She told me from day 1 (she didn't need to because I would have expected this) that her husband has to come first but she will always love me as her mother. I've also always told her since she was born that I just want her to be happy & healthy, first and foremost. I said that if I get to see her at one of the holidays a year, I'll be grateful. She is now close to her stepmother (they're only 10yrs apart in age) and understandably wants to get closer to her 3 siblings who range from age 5 to age 17 (given the proximity in age, the youngest relates better to my granddaughter, and that probably will always be the case). Her stepmother thankfully has a good community of support (I might be wrong for saying this as I'm sure it's a blessing & a curse for her; she is strikingly very pretty as she could be Margot Robbie's twin...she's definitely the epitome of a barbie doll; she did say some not so nice things about me as I used to have a similar figure - though, not near as pretty - but after continuous steroid therapy for 3.5 yrs, I lost most of my Thyroid from the 14 cancerous polyps; I had no idea about the effects of steroids & my endocrinologist says I can never have steroid treatment again; since I lost the use of my Thyroid, I don't know what they can do to me that's bad except add further weight; I'm trying to get rid of 80lbs as it's horrible for my spine & I'm afraid to eat - as I can't throw up - just like my father - but mine's supposed to be due to my Palsy so I'm looking into Bariatric or anything that can hopefully help...because that's where my daughter's stepmom, my daughter's in-laws, the only 2 relatives i have left, & some friends have really been caught up on my weight by either making fun of me or not wanting to be embarassed by me, etc.). There were times in my life when I helped a lot of these people and I realize now I gave them what I could have had now because I'm now pretty broke. My last operation was in 2020 - to fix the previous lumbar - and it just made it worse. I now hear all the time that if I could have had the operations in another state/city (particularly New York City) then this wouldn't have happened. But that's not going to do me any good now except someone told me about this place in NYC that handles people in my situation. There could be a way I could get a loan if I knew there was a good possibility for me. I just want to not suffer in pain, which really is being on the right anti-spasm medicine for my upper spine and supposedly my L3 is really impinging on a nerve causing me to fall as much as my father did in his 70s. Then I can go back to work. Then I can hug my granddaughter and see my father before he passes away. Then I can't stop suffering and not wanting to die because everything keeps telling me that's the only way out of this. I'm with someone now that I have known for 20yrs, but for how long? He's a "functional" alcoholic. If I was stronger, I know how I could help him because he wants help. Right now he's able to keep a job and work from home. I used to be his soulmate, the 'love of his life.' His company witnessing my spasms and helping me with my injections when I have them have been everything, his faith in God has kept me alive. The worst thing also is during COVID a lot of my doctors went MIA, and I'm having to start all over, particularly with my neurological issues. I now have an infusion pump because my stomach couldn't handle the medications (before the pump, I made a one-month pain medication supply last at least 3 mos. and I had other important anti-spasm, anti-inflammatory, etc.. that were NOT-FOR-PAIN medications, all were hard on my stomach so the pump was supposed to help me with more than pain medication & also Congenital Varicella Syndrome) but the doctor (the back surgeon implanted it last year; the doctor that put in the medication & maintains it is a physiatrist) put in one medication at the dose he wanted from day 1 (didn't explain anything to me), and he hasn't changed anything since, even though there's been a LOT of changes (i.e. my EMG tests are way worse). When I go back for maintenance, I see someone who is still in training who replaces it; I never thought I couldn't even get a chance to talk to this doctor but he knows his practice is the only one in at least a couple hundred miles that maintains these pumps, and that I'm stuck with him with a co-payment of over $600 4x a yr. The surgeon who operated on me and declared Failed Back Syndrome said that he wanted me to have the pump so I wouldn't suffer. That's how all of this happened. Without a certain anti-spasm medication, the Cervical Corpectomy alone keeps me from laying down to sleep where I'm lucky to sleep in a lazy boy chair for a couple of hours. I don't have a regular primary because right now my insurance doesn't require referrals. When I have one, they never get the records no matter what I sign to fax to them or what patient portal I sign up for. I hand deliver as much as I can but no one seems to read anything because when I ask about something they act like they don't know what I'm talking about. I know with having Asperger's, it's going to be hard for me to talk to doctors where they care but I'm doing the best that I can. I type everything out and re-edit it as many times as it takes to get it as short & to the point (I'm sorry I didn't do it with this but I only have so much time; my last fall was so bad that I was lucky to get two medication that allowed me to type for more than 2 min. without spasming and I was sooooooo happy as they told me my doctor would surely take over). That's why I feel like everything & everyone is telling me to 'kill myself but I don't need to be in some mental hospital. I tried that as I don't give up too easily trying everything. But I don't know what else to do. My daughter is too busy and has her own health issues that I should be helping her (at least some of the time; she has bad migraines too & at least moderate scoliosis). I KNOW if my brother was alive, he would make sure that I would get the treatment I need somehow. If I knew what he would do, I would do it myself...but I've tried everything. I can't thank anyone more than enough for reading this far. If I somehow make it through this, I would pay you for doing just that. I'm dead serious. That's how crucial this is and if I ever can get help to move forward, I'll never forget ANYONE who helped me get there, even if it's a listening ear (or reading my extremely lengthy exposition).