Dysautonomia- information for you

Dysautonomia- information for you

Hello Luvs,

This is a URL to a PDF file that I have gotten from the STARS group in UK who helps people with Autonomic System failure or “ASF” aka “Dysautonomia”. Just “Click” on the words above …where it says”Dysautonomia-Information For You”. Many of us with RSD/CRPS have this system failure or issues at the very least. All of us with POTS/NCS -Syncope issues, have this also…check it out. Please note that it is 197 pages. But you can read it without saving or printing it, thus saving space if you are on a tablet or Ios device phone or an Android. Just click and then read, because it will take you to the written information!…




From Sunshine to Storm

20130423-152940.jpgHello Luvs,

I try to write about a good variety of things on this blog. Some things about my life, my pain and things that I’ve done or am doing. Other times I try to write about upbeat, helpful “Life” stories, advice and /or help. Then again, sometimes I try to write about things that we can all relate to in one way or another. I’m sure there are some things that I choose to write about that you are not interested in and hopefully other times I may write something that will intrigue you. Today, I’ve decided to write about being a mother, a single mother, a re-married mother, a mother who lost her child and a grandmother who’s never had the chance to hold her first and only grandchild, a granddaughter (so far). It’s a journey that some of you may relate to on some level or another. Yet, there aren’t many that I’ve heard of or read about who’ve been surrounded most or all of their life by a family that they were born into, who actually get and have gotten “pleasure from their pain”. A family and 99% of that extended family that they were born into and another that they had married into and later divorced; all of whom have sought out to hurt and literally try to “kill” you without thinking a second thought. The reason being is that they are all Narcisisstic abusers! When you are just thrown into the” fire” to fend for yourself amongst these kinds people, who have all denied having any problems of their own, you actually realize why you’ve always felt so “bad” inside. I am talking about my life, my family and my ex husband,(father of my 2 children) and his family. I had always felt so powerless and small against them all! But once I decided to forgive them and realize that they can’t help themselves until or unless they realize that they want or need help. It took me years and years of going through a ton of horrible situations with verbal, physical, emotional and every other unimaginable abuse, before I was strong enough to say “STOP! NOT ME !!! ..and NOT EVER AGAIN!!” Sometimes it appears on the outside of things, to be very “lonely” when you take a stand to decide not to allow yourself to be abused anymore by anyone,not ever! But with God on my side, I will never truly be lonely. You may have your own higher power. I believe that all people are equal and that everyone has the right to believe in their own “higher power” and have their own personal spirituality. I feel that we need a sense of where we came from, how we arrived at where we are; and to what place we are going when this reality we know as “life” will end. I happen to be a Christian, born and raised a Catholic and went to Catholic schools all of my life. If I didn’t have my God in my heart, soul and my life, I would be totally lost. I would feel like a fish out of water flopping around with no air to breathe. I am thankful for God, for Jesus dying on the cross for my sins and the sins of others; for the Holy Spirit who came into my life and who has given me the power to persevere in the harshest of circumstances.
Today, my friends, I want to tell you about my eldest daughter. If you know me, then you know her name, but for the purpose of this blog and to respect her privacy, I will be calling or referring to her as my “Sunshine”. She was born in May of 1986, during a C-section that was planned because she was almost 9 lbs and in the breech position. I was scheduled for a C-section and then while having a cup of tea on the night prior to my scheduled delivery, I went into labor. We waited a little while to go to the hospital, but I was just really excited to have this baby, so we didn’t wait too long and we drove to the hospital about 10:00pm on a Wednesday night in May. I had had a previous miscarriage and my then husband, “Bully”, we’ll call him; had bonded together with my father and they tried to force me into having an abortion when we first found out I was pregnant again. Bully had lost his job at the Sheriff’s dept., or actually at that time he had “quit” that job to go into a business with his own father. We had no insurance for a short time. They sat me down and tried to actually talk me into making such a horrible decision as to just “throw away” my baby like it didn’t matter! ?? I would not hear of it. I would not listen to anything they were saying. I told them that if I had to “go it alone, I would”. They knew that it was early on and they knew I wasn’t changing my mind and so they got busy getting Bully to get rehired at his Sheriff’s dept. job, in the jail.
Fast forward now to the morning in May of 1986, when I was in labor and the OB Dr. came in and told me that there was an emergency in the other surgical room, with twins involved. He asked if I minded just waiting until morning at my scheduled C-section time of 8:00am. I wasn’t in “active” labor and never dilated, so I said I didn’t mind at all. I had some painful contractions, but nothing that I couldn’t handle. Besides, I was so excited to be a “Mommy”, that I could hardly contain myself! It’s something I’d always wanted and everything I’ve always wanted to be.
Finally, it was my turn! They put up a curtain, Bully put on his scrubs and I was in the O.R. having our baby! They gave me a bit too much in the “spinal” anesthetic and suddenly I didn’t care that I was having a baby, or even remember! I could not breathe! They’d given me too much numbing and my lungs were paralyzed! I couldn’t breath and they had to bring in a machine to breathe for me until the anesthesia wore itself off! WHEW!! That was scary! But at 7:17 am on that Thursday morning,suddenly I heard a baby screaming as though no one had fed it for a week! They showed me this most beautiful bright red, screaming loudly, little baby girl! They showed her to me and for the instant that I saw her, it will be etched in my mind forever! Her mouth was open, she was bright reddish purple and screaming very loudly. She was really mad at somebody for taking her out of her comfortable zone! That’s what I’m thinking! They finished me up and took the baby away to get weighed, measured and all of that stuff. I had a baby girl! At once she was whisked away to the NICU! I was so afraid because this was my little daughter and I couldn’t protect her like I could when she was inside of me! They told me that she had a high red blood cell count (that’s why she looked like a little American Indian Papoose baby!) She was so red faced and so beautiful!! Also she had a UTI that she was born with for some reason? Lastly, she was jaundice and had to stay inside of an incubator for a few days! After the feeling came back to my legs about 3 pm that day, May 22, 1986, the nurse had me try to stand and then the next day I could go down and see my baby in a wheelchair. When I went to the nursery, I looked around for my baby and they were all “preemies” and I couldn’t see mine anywhere. Finally, the nurse said to me “Oh your baby, she’s in the “bad girl swing”…she was crying and crying and they needed to soothe her so that they could tend to the other babies and the swing worked! She loved it! It was kinda funny to see an 8 lb 12 1/2 oz 21 1/2 inch baby girl among the preemies in the NICU! I knew she was OK so that was the best part, the worst part was that they had an IV in her poor little arm and it was taped onto a board! She had little blood test marks all over her poor little toes and even a bruise on her head where they had to put the IV for awhile for some reason?? She had chest EKG patches on and it is a very scary thing for a new parent to see their new little baby like that. Then on the 5th day, I got to go home and on the 6th day we got to go back and pick her up. It was the hardest thing to leave my newborn little girl at the NICU and go home without her. Though, again I will tell you that I was assured that she’d be fine and just needed a little time on the antibiotics and under the Biliruben lights. We went back to get her the next day ASAP! When we got home with her, I had a fever, a very high fever and I was vomiting and my skin was a yellowish/green color! We went to my PCP and he said “it was the flu” (although I didn’t get to see “MY” Dr., I saw an intern). I only got sicker and so we visited my OB/Gyn Dr. and she said my Blood pressure was like 200/140 or something like that! She put me in the hospital ASAP! I had to leave my husband and my newborn baby girl (although they could stay in the room with me, which helped a bit) just as soon as I had gotten her home! They said I had “Toxemia” and it was an “afterbirth Toximia” and I was in the hospital for a few days and then back home to recuperate from my C-Section! We were finally a family! I had everything I had ever wanted! I adored her and she was my “traveling baby”, as everyone used to say because I took her everywhere with me! We were shopping buddies and she never wanted to nap and possibly “miss” something! She did sleep at night pretty close to after the first month! I was very lucky. Although she wasn’t a great “napper”, she was so smart and so beautiful and so perfect! She was my “sunshine girl” and that became her nickname from me for her lifetime!
I will tell you later, about my second child because today is about My Sunshine girl and I just wanted to think about her today while I am writing. Both of my children are and have always been my everything. When she was only 6 months old, she could speak! Yes, it’s true! She could already say “Hi”, “Mama”, and “ubbu”(which is “I love you”). She could speak complete sentences by the time she was one year old and she knew the alphabet and the song and many many things by 18 mos. old! She was the most loved baby ever! I just know it in my heart. I couldn’t have loved her any more than I did and do! She went to Kindergarten and got off the bus on the first day and reprimanded us for following the bus! She wanted to ride the bus the first day of school and she wanted to walk to her teacher all by herself! Her teacher had called to tell us that she would be the one holding a “blue balloon” and “Sunshine girl” should go to her. She did well but was very sad those first few week of school, mostly because her father took me out to dinner on September 19, 1991. He told me to get all dressed up and that we were going to “Red Lobster”, one of our favorite, better places to eat. It was Homecoming night for the High school nearby. All the girls were dressed up in long gowns. I remember it very clearly. My ex told me after we’d just eaten dinner etc., that “he didn’t love me anymore”. He told me that “his mind was made up 100% and he wanted a divorce”. He told me he “had a girlfriend who was moving in with him”. He said this on a Saturday night and when we returned home, I offered to drive the babysitter home because I was pretty upset (inside) and crying. I wasn’t really surprised because I knew he’d cheated on me several times. I had women call and ask for him and then hang up on me when I answered the phone. I had been to the Police academy with my baby girl to show a cadet there that my “ex” had a family and a baby and she shouldn’t be “having lunches inside of his car with him”. He almost was kicked out of the Police Academy for being found in the car “making out” with another woman on his lunch hour. My own brother went through the academy with him and he almost got kicked out also, for trying to start a fight with my ex, regarding the girlfriend. My family decided NOT to tell me because I was pregnant with my 2nd daughter at the time and they thought I couldn’t and wouldn’t handle it well and my ex promised my brother that he would stop! It never stopped because my Sunshine girl was only 4 yrs old & one time told me that while I was at work,”a girl came over” and “she kissed Daddy and told him that she loved him”! When I asked him about it, he told me that “she was just a friend from work”. Then many nights while he worked afternoons and was supposed to come home at midnight, I would be alone in my bed and watching over two little ones under age 3, until about 3:00 am! Then one night I got tired of it and I called the dispatcher at the Sheriff’s dept. at 3:00 am, when he still wasn’t home! He told me “Suzanne, you are a nice lady and “Bully” is a jerk and he picked up a girl at the 7/11 store and went someplace with her, I’m so sorry! I just had to tell you because you are such a sweet lady and he doesn’t treat you right! We’ve nicknamed him “Rambo” because it takes him a good 20 minutes to take off all of his weapons and put them in the trunk of his car before going to work down in the jail!” That dispatcher said that my Bully had been “cheating on me for awhile; and he was very sorry”.
Bully told me he wanted a divorce on a Saturday and by Monday, I had landed a full time job Interpreting for the Deaf, at the High school in our town. I was worried about my Sunshine girl because she was so sad. She didn’t want our “family” to be broken up. I stayed a long time in an abusive situation towards me and towards our dog, “Bullet”; because I wanted to try and keep that “dream of being a family” alive for all of us. Somehow I didn’t realize that it was hurting my daughters as well. I didn’t want to have to make them move away from their friends, their own bedrooms, that were beautifully decorated, just for them. I didn’t want them to have to go to daycare!!!!! I had children so that I could raise them, not someone else! I had no choice in the matter. I will make sure to be fair and tell you “Bully’s” side of the story behind why he wanted to leave and get a divorce. Also, why he had several girlfriends already and this last time he was leaving me for an 18 yr. old waitress at a bar where he and his partner frequented on their shifts as Sheriff deputy’s. He and I both tried to lose the weight that we both gained during my pregnancy. He lost it even faster than I ! His co-workers actually asked him if he had “Aids”, because he’d gotten down so thin and had always had the nickname “refrigerator” because he was barrel chested and a bigger guy. Then when I lost the weight, I became “afraid” of food (that’s another long story from a history of abuse, starving, poisoning etc from my own family of origin!). I had fought “on” and “off” again an eating disorder called “Anorexia”, since age 13. That is another long story for another day, but I had only dieted here and there during our marriage and hadn’t had the eating problem until I “over dieted” and seemingly couldn’t stop. Mostly, because my life was out of my control and I was being cheated on and abused and couldn’t do anything about it at the time. I felt “stuck”. I could never and would never leave my girls and I hadn’t a clue what I was going to do or how I would make things work.
I voluntarily checked into an Eating disorder program at a local hospital and I was in and out of that program three times in one year. I had ONLY been struggling with the Anorexia for ONE year before he checked out and decided to stop trying and wanted to leave our almost 8 year marriage. I took care of the home, I worked part time, took care of two children and a nice 2 story home in a nice country area of Michigan. I went through 2 C-sections, and 10 hours of labor with my first and 43 hours of labor with my 2nd daughter! I didn’t have any extra money to buy “mommy/daughter” outfits and had always wanted that. We didn’t go on vacations or go anyplace together really. I took the girls to the zoo usually by myself and met a friend and her kids there.(**The first thing that “Bully” did after he moved out was that within 3 days he “had a girl in his bed”, when the girls went over to visit him in an apartment that was attached to one of his parents houses. They came home from that visit very very upset about that news and couldn’t wait to tell me through tears! That girl was an 18 yr old who 6 months later, before the divorce was even finalized, wore an Easter dress that matched my 2 daughters! My ex had bought them 3 dresses to match…something obviously ONLY intended to hurt me more, knowing that WE never had the money to do that; and I had always wanted to do it. What happened to marriage “for better or for worse”? For “sickeness and in health”? I stayed and I was trying; all the while living with a perverted abuser who later was found “guilty” by a jury, of “hurting another girl” besides me. But I got hold of my eating disorder and got a full time job right away! After that school year was over, I needed to have medical insurance so I had to get a better job with benefits that were more conducive to a single mother. I got a full time job at the University of Michigan Hospitals. I was a secretarial “float” and an Interpreter for the Deaf. I was happy to have the good job, but devastated to leave my girls all day someplace else, when my baby girl was only 3 and my oldest was 5 1/2.
This blog today was going to be about my “Sunshine girl”, but it sort of turned into my “story” of abuse, betrayal, divorce, illness and relocating…it is about a mom turned “single mom” overnight, with 2 young daughters 5 and under! I just couldn’t let this story today end, without telling you one more situation that occurred. A friend of mine had gotten a ride with “Bully” when she came to see me after I’d given birth to my 2nd daughter. They drove together to the hospital, came to visit me and he took her home. I never thought another thing about it. I did wonder why she never spoke to me again? I found her recently on Facebook! I “friended” her and said “hi” and told her about my life and she wrote me back and told me why she hadn’t spoken to me since then. **(See small photo of message I received from her on bottom left of this post). She explained that “Bully” had made crude/rude sexual remarks to her that night in the car when he drove her to see me in the hospital. She said he even “exposed himself” to her”! (Wow!! while his wife had just spent 43 hours in labor and then had a major surgery/a C-section!! To have HIS baby!!!). Well, no wonder she never spoke to me again (she was married and had a baby boy), who could? Later, “Bully” went on to be prosecuted and found “Guilty” by a jury of “Indecent Exposure and Obscene conduct” with another young girl. Needless to say, the judge in our divorce case found out about the “guilty” verdict. Then after “Bully” had threatened me in the courtroom (I have those court transcripts, by the way!), the judge sent my daughters and I to a Domestic Violence shelter for safety concerns. He told my ex that he could not see the girls without a court supervisor because of the nature of his conviction, and being an “ex Sheriff deputy” (he got forced to resign obviously and part of his punishment was that he was ordered to “never be allowed to be in law enforcement again”!). “Bully” didn’t like that idea and decided to “go away and find himself”. He maxed our credit cards, took our little bit of savings from the bank and left $15.00 on the kitchen counter! (I wouldn’t be getting my 1st check until 2 more weeks went by) I had to stand in line for over 3 hours with a 3 yr old and a 5 1/2 year old, to get emergency food stamps, ! The next day when I came home from work, the food that had been bought with the food stamps was mostly gone! He still had a key for awhile after he left and he came in and took the Peanut butter, cheese, cereal etc. right out of his children’s mouth’s!!! He rarely saw the girls and he moved away 1,000 miles to another state. He hardly ever called either, except to tell them that “they had a new stepmother” and a few other times. I went about my life and our lives, taking the girls to their day care, school, dance lessons, recitals etc. I brought their forgotten homework to them at times when I was at work and got a phone call that either one of them had forgotten an assignment!! I loved doing it all and I lived for doing it all and never minded at all, not once, not ever! I always wanted to be a mommy and I finally was!
But at age 18, my “Sunshine” moved out because I wouldn’t allow her to sleep over night at her boyfriend’s house. She was still in High school and living at home, and had a younger sister who looked up to her. She wanted to do illegal and immoral things and I had tried so hard to teach them right from wrong. I took them to church and to Religious education classes. I loved them both and still do, with all of my heart and soul. She wouldn’t speak to me again and blamed it on many things but the things she blamed it on mostly happened one night when we argued for hours and hours while I was in horrible horrible chronic intractable pain after a car accident. She went up the stairs to her bedroom to get another set of car keys (because I had taken her set) and clothes that she’d already had ready in a pile on her floor. She knew she was going whether I allowed it or not! On her way up the stairs, she started punching out my new husband. We’d already been married 7 years and she loved him a lot and both of my daughters wanted me to marry him! We all loved him so very much. He blocked her punches and she told people that “he punched her”! The thing is this: she stayed living in our home for 3 months after that. She told me that I “don’t know how to raise daughters”….that “she hated me”….she called my voice mail and must have found my “Carepages update” (I’m guessing, but this I’m not sure? It’s a place where I put updates on my health so that I don’t bother people and only people who want to know how I’m doing can go there to find out how I’m doing )…..she left a voice mail for me in 2008 “out of the blue” and it said “Suzanne, why do you think people care about you? They don’t!!” …it felt like a dagger in my heart, but it wasn’t those other words ….it was one word…the fact that she called me “Suzanne” instead of “Mom” or “Momma”…it still gives me a sadness like no other when I think of it.
Anyway…this all happened long ago…all I can say is that I truly always did what I thought was the best for my kids. I put them first always and never cared if I had any other life than the one I had with them. Another time I will write about my daughter #2, who I call “My Joy”. BOTH of my girls are my life and without my eldest in my life, I ‘ve not felt like I have a full one because so much is gone without her in it. I have sent so many little “non-preaching” cards and little knick knacks and always sent birthday cards until the last few years. But still I sent one just last year again, in 2012. I wrote in it something like ” How can we fix this? I’m sorry for whatever you feel that I’ve done that hurt you in some way? What can we do, time is going so quickly??….” I don’t know what else to do or say because I am just guessing that since I’ve never gotten a card or heard from her in any kind way, that she doesn’t want me in her life ever. I was a mom who didn’t use any form of violence in words or actions ever ! I used explanations (too much…too many) and information and tons and tons of deep love to guide me in my parenting. Of course I’m not perfect, but any time I ever said something the wrong way or if I could’ve said it in a different way, I would always try to apologize and discuss things. I know that I tried hard without ever having the true love of a mother shown to me without sarcasm or meanness. I tried to do everything as I would have liked it done to me and tried to treat my girls how I would have liked to be treated. I never said “no” unless there was some kind of harm in a situation because I wanted them to have fun and do sleepovers and experience life.
I’m not sorry that I did everything for my daughter(s) that I did, while they were growing up. I never missed an event for them, I had to make sure someone (me) was there in the crowd to clap for them. I never wanted them to feel alone. I thought at least if I was one person who was a constant in their lives, they would be stable and know they are truly loved by one person unconditionally. One person who loves you like that, is better than 25 fake people who “use” you or hurt you etc. I made lunches with little notes and heart shaped sandwiches on Valentines day and other special times. I made green milk and bought green ribbons for their hair on St. Patricks day! I french braided, twisted, “princess pony-tailed” and fish tailed my girls long beautiful hair every day as long as they allowed me. I bought them special t-shirts, matching clothes and tried to do all that I could to make her/them happy. I tried to give them any and everything they wanted, needed and more, if I was able and if and when I wasn’t able to, then I tried explaining to them “why”! I brought pizza to the High school for my daughters 16th birthday while she sat with her friends. I brought enough for all of them. They even wondered how she could be so unkind to me regarding that day…you see, when I brought it, I hadn’t planned on staying or anything. I wanted just a few moments to see the fun and make sure she was having a good birthday. But as soon as I put the pizza on the table, she told me to “drop it off and leave “! I felt so empty and hurt that day, but I let it go and we kept going from there. I cannot and will not be specific about all of the things that happened continued to happen involving my Sunshine girl, from age 13 on up … I tried my very best to be 150% fair and treat the two girls equally and give them equal love. I tried so very hard to do the very best that I could with the cards I have been handed.
Lastly, I had a heart attack in 2005. The cardiologist said that I was his “first case of “broken heart syndrome”..he knew and had seen how much love I had/have for my daughters and how my heart was literally “broken” when I “lost” my sunshine girl. My husband did call to tell her, but we never told her what the Dr thought about how It happened. She never called back to see if I lived or died. Obviously she knows now..but ….then in 2006, I had a CVA or aka a stroke. In 2007, I acquired the MOST painful of all chronic pain diseases. It’s called “RSD/CRPS”. This is known as a progressive, horribly painful “Neuro-Autoimmune disease”; and it’s #42 on the McGill pain scale (Which is right up there with childbirth and Cancer pain!!). We never bothered to call her because I knew she didn’t care. That hurts so so very much….she still doesn’t care and it hurts so deeply; mostly because I was always there for her. I remember one time the dentist sent us to a gum Dr to fix a little extra thickness between her front teeth after her braces came off. They wanted to cut her gums and do a painful scale back of them. Another parent may have just blindly listened to that Dr. but I said “let’s wait and see what happens”. I could not let her be put in pain for something so unnecessary. I wanted to wait and see what happened and it went away by itself. I’ve had 10 surgeries since my MVA in 2002 and she never ever offered to help and she was 16 when it happened. She never even tried to do one small thing to help us, her family at a very difficult time. Instead she “ran with it”!! Sunshine girl used my pain as an excuse to be sneaky, lie to me and go on more “sleepovers” after that accident. I never felt any empathy whatsoever from her even as she got older; and then to hear her call me by my 1st name instead of “Momma” ,it broke my heart….I’ve lost her and it’s been so many years now..going on 9!
I’ve missed her engagement, her shower, her wedding . Her father walked her down the aisle, when I raised her without any help from him…I feel like I did all of the hard stuff and He gets the grown up daughter now and I’ve lost her. I still wouldn’t change anything because I got to have my baby girl for about 15 years or a little less, really. I didn’t even get to be a part of her pregnancy , baby shower and now the birth of my first grandchild, a baby girl (who’s already about 7 months old I’ve heard!). I didn’t even know she was pregnant or that she’d had a baby until I found out by accident one day.
I’m so so saddened by this and feel like I will never be fully happy again. I know the worst feeling for a parent is to “lose” their child. She will be my “child” until the day that I die; and she’ll always be my baby, too. Now that she has a baby girl, I wonder if her daughter comes to her when she’s 17 and in High school and tells her that she was going to spend the night at her boyfriends house, I just don’t think she’d respond with what her father told her; which was “We’ll adopt the baby if you get pregnant, don’t worry.” He also said to her that “this is what teenagers do” and he told her this is what he did when he was a teen. I honestly think if she reaches into her heart and soul, she would know that when her baby girl turns 17, and if she tells her that she is going to sleepover at a boyfriend’s house; I just cannot honestly believe that she would say what her own father said. I pray that having a daughter of her own will prove to her that there’s no “how to” book. I did the very best that I could and it came from my heart. Mommy’s who love their children also make mistakes… But I honestly did my best and there’s no one in the world who knows her inner heart and soul like I do! There’s no one who can take the place of a Mother’s love…. because I was her “Mommy” long before she lived in this outside world!
I love you “Sunshine girl”….please come “home” to my heart?? I’ve been waiting such a long long time. We may not forget but please… Let us start by forgiving and starting anew; both as adults now…” I love you forever, I’ll like you for always; as long as I’m living, my baby you’ll be!”

why my old friend hadn't spoken to me in years
why my old friend hadn’t spoken to me in years

my memories

Tears Of Truth…..My Story..

pie chart of causes of traumatic brain injury
pie chart of causes of traumatic brain injury (Photo credit: Wikipedia)

2013-07-01 09.23.57

      I am an Interpreter for the Deaf, that’s what I went to a 4 year university to become!  I worked at the University of  Michigan hospitals as a secretarial “float”.  I  was paged whenever a Deaf person came into the clinics, hospital or E.R. and  I  would go to them to aid communication between the Doctor and patient.  

    Then in 1998 my *(see below)*abusive family got worse when I confronted them!  Depression and anxiety set in, although,  I finally felt safe with my new husband.   I started having Flashbacks and nightmares.  I  was granted  SSDI for CKDII,& PTSD (Chronic Kidney Disease stage II and Post Traumatic Stress Disorder).  I was going to try and go back to work in Fall of 2002, but that plan changed abruptly on Aug 11th, 2002.   A man arguing with his wife, ran through a red light and totaled our van and  my body!   I suffered:  an MTBI *(mild traumatic brain injury) & 3 yrs of TBI *(traumatic brain injury) rehabilitation.  I was horribly injured and in so much pain!  I had been knocked unconscious for about 20-30 minutes.  I was hurt in so many places and weighing only 90 lbs didn’t help me at all!  Both of my knees and both of my shoulders were torn.   My right  biceps tendon tore right off of the bone on my  right side. My right ankle and my right foot were injured.  My ears suffered nerve hearing loss (*I now have 2 hearing aids) and my eyes suffered some nerve damage as well.  Many lower back & neck disks were/are herniated, ruptured and bulging.  As time went on I ended up with two frozen shoulders.  I went through 8 yrs of Physical therapy, 3 yrs of  TBI rehab, and underwent 9 surgeries; including  2 screws in my left shoulder and an intramuscular pacemaker, twice in 10 years now.  My first one was placed inside of my pectoral muscle because of its vulnerability inside of my chest at such a low weight.  But 10 yrs later they did plastic surgery to rebuild my pectoral muscle because the pacemaker had worn right through the muscle wall!   

   Sadly, in 2004, my 18 yr old daughter left home because of reasons I won’t write here. My heart was literally broken! I had a heart attack one week after Mother’s Day, in 2005.  The cardiologist said that I was “his first case of “Broken Heart Syndrome“…my daughters were my life and I raised them 98% on my own! I had left my ex-husband, the father of my two girls, after an 8 year abusive marriage, in which he also cheated on me  several times.  He was an abusive Sheriff’s Deputy who was fired for “hurting another girl besides me!” He was given a jury trial and found “Guilty” of “Obscene conduct” and “Indecent exposure” (which were truly lesser charges than what actually happened!) . His punishment ended up being that he can never be in law enforcement again.  He also couldn’t see our two daughters, then 31/2 & 6 years old, without a supervisor approved by the court. He was abusive towards me and to our Rottweiler, ‘Bully boy”. He pushed down our then 3 year old little girl, because she “wasn’t hurrying fast enough”.  He pounded my oldest daughter on the top of her head when she was in tears over him kicking our family dog in the head and neck, as she cried “daddy don’t hurt Bully Boy”! While hitting her on top of her head, he said “I’m the dad and I can do whatever I want”!! He left his service revolver out on top of the window sill and on the back of the toilet seat! When my youngest was 2 years old, she brought it to me saying “Mommy, what is this for?” Needless to say, they took his guns away from him and he was punished after that incident and then swearing to “shoot all of us and himself!” There’s so much more…too much to write here except for one thing that sticks out in my mind so sharply.  During the time when my ex-husband could still see our girls, before he was convicted and found “Guilty” and only allowed supervised visitation; he had taken them for the weekend. They came home and told me that “daddy had a girl in his bed”. They told me that my youngest who was then 3 years old, had vomited in the bed that they shared in the apartment he lived in, that was attached to his parents house. Our oldest, who was just 5 1/2 yrs old, went upstairs crying to him and knocking on his bedroom door. She was crying and saying that her little sister had thrown up in their bed. He told her to “shut up and leave him alone”!  She was 5 years old and had to try to take care of her sick 3-year-old sister, while trying to clean up vomit on her sister and the bed !  Needless to say, that was their last visit with him unsupervised. We had to go to the Domestic violence shelter and we had interviews with Child and Family Services. They sided with me and recommended “supervised visitation and anger management classes”.  The judge agreed with their recommendation. He was embarrassed and angry, therefore he moved 1,000 miles away barely ever seeing his daughters. He was angry and wanted “revenge” on me for “taking away his kids”.  I did not do that though;  he did it to himself and then the judge ordered it!

Atrial fibrillation
Atrial fibrillation (Photo credit: Wikipedia)

  I was never ordered to do anything but I still sent him photos, invited him to public school and other events in their lives and his parents as well. I took the girls to visit his parents who lived about an hour from us, here in Michigan at least once every month and each Christmas day they went to see them from noon until 7:00pm! I even drove them to and from their home which was an hours drive from our apartment.

   Later,  in 2006, after my  heart attack, I acquired “Atrial Fibrillation” *(Atrial fibrillation is when the heart muscle quivers and shakes, spitting out little blood balls or clots which can cause strokes) and therefore ended up suffering  a CVA *(cerebellar Vascular accident) or “stroke” from the A-Fib! I had already been on blood thinners but apparently I needed a bigger dose!     It’s been since 2004, & my oldest daughter has never wanted to see me or speak to me.  In 2007, I texted her and said “I Love you and I’m thinking about you.” She called me back and asked me to meet her and we did. We met twice and had lunch, but it did not work out very well. Another time she texted my cell phone and it was 2008 or so….she texted “Suzanne, why do you think people care about you?  THEY DON’T!!”….I fell apart once again.      

    I recently had my 9th surgery this year in February 2013….a new pacemaker and a rebuild of my Pectoral muscle!  Then on August,the 5th, 2013, I’ll be having my 10th surgery, oral surgery!  I found out that my oldest daughter got married in Oct, 2009 and to the same boy she wanted to sleepover night with while still in High school.   That was the episode that led up to her leaving home, because I said “No” (that she could not have my permission to sleep over at a boy’s house while still in High School)! I also found out that I  am a Grandmother to a little girl born in Nov -2012! Her name is Olivia, and as of this month (July 2013), she is now almost 7 months old. Again….still…I am heart-broken!  All that I’ve ever wanted is to be a Momma & a Grandmother!  I was/am a good mom..my ex-husband ran away “to find himself” !  But I’m the one who stayed and raised our daughters alone.

    I’ve lost so much…but I thank God every day for what I do have : my youngest daughter, now 241/2 & living in her own appt. since August 2012!!! She graduated last Summer (’12),with her Master’s degree in”Library & Information Sciences”.  She has her own apartment. She also has a wonderful Academic Librarian job with a tenure track etc. I have had the most wonderful husband, for the past 16 years! He’s the love of my life and my soul-mate!!  He has been an elementary school teacher for 35 years and he is the best teacher and the best husband ever!

    This is my story..PTSD that continues and never seems to end because my father and brothers  still treat me in an abusive manner.   Add that  I’m in chronic intractable pain 24/7 since that MVA in 2002!  I acquired “full body” RSD/CRPS  a painful progressive Neuro-autoimmune disease, which causes burning nerve pain similar to the feeling of being “on fire”!  I have OA and 2 Rheumatologist’s have said that I have RA  *(one of them gave me an injection kit for “Humira” and wanted me to start taking injections.  Luckily I didn’t ever start taking them because I found out that I have an IGA deficiency and that RSD/CRPS is an autoimmune disease, therefore that medication could have made me much worse off!), but my PCP and I aren’t quite sure, or really don’t think so at this point! I have Myofascial Pain syndrome, Fibromyalgia (which I’ve denied for several years, but am finally coming to terms with it).  I have Dysautonomia which is  my Autonomic nervous system dysfunction or failure.  It means that all of those body systems and things that our bodies do without thinking about it, don’t work for me.  This includes: body temperature, respiration, blood pressure, digestion, sleep disturbances, memory problems, heart arrythmia’s and more.  My brain stopped telling my heart what to do, which is part of it also and one of the reasons for me needing a pacemaker!  I also suffer from POTS (Postural Orthostatic Tachycardia Syndrome) and NCS (Neuro-Cardiogenic Syncope), CKDII (chronic kidney disease stage II, due to tubular interstitial nephritis), Hypogammaglobulinemia ( an Immune deficiency), Sick Sinus Syndrome, Coronary Spasms, Atrial Fibrillation, MVP, TVP, (Mitral valve prolapse /tricuspid valve prolapse), Chondromalacia Patella and Patella Femoral pain syndrome, Asthma and  other diagnosis’ but just too much to keep writing for now.  

   All I pray for daily is that my oldest daughter will come back to me and to us.  I pray that one day I will get to hold and see my granddaughter, because I already love her! I am blessed with a wonderful and loving husband. Also, I have God who is my Lord and Savior and it’s because of his love that I can never give up.

**(from above…In another post, I will explain more about my life and growing up in an abusive and highly Narcissistic/abusive home, where I was starved, poisoned, weighed weekly and given punishment/reward dependent upon my weight.  I was also abused in just about every possible way by almost  everyone who was supposed to love me; and those who I was supposed to be able to trust!)

2013-06-08 02.35.10 2013-06-08 02.31.41 MY RSD/CRPSII 2013-07-01 08.42.51 2013-07-01 08.42.10

2013-06-25 02.19.13 2013-06-26 11.12.25