The WHOLE STORY of the Car Accident and Beyond!

Hello Luvs, 

I am sitting here on this New Spring day....Life goes through so many changes and sometimes I never know which way it's going to go....up...down??? Here?? There???  What is happening in this world to make so many people so unhappy?? It's so hard when you think that things are going along one way and then "poof" life can just change in a heartbeat....literally  in one heartbeat, life can totally change!  

   I remember back in 2002, my youngest daughter, Amy was at her bff's birthday party! My oldest daughter, Jessica was at her "lifeguard" job at the rec center.  Craig and I were sipping lemonade at a little Summer Art fair. We were walking around looking at the Arts and Crafts and then decided to leave and get dinner in downtown Plymouth. On the way home we got into an accident, a car accident. A man ran through a red light as he was arguing with his wife  and while he wasn't paying attention for those few moments, MY and OUR life/Lives changed forever and not for the best!

  I was unconscious and don't really remember much except what stories I've been told from Craig and others after the fact. I know that I woke for a few moments and I could just see sunlight shining down on me but I couldn't really figure out what was happening. I kept calling Craig's name but couldn't see him. They told him to stay away because I was getting upset at being put on a back board and with a neck brace on and I couldn't move one slight bit. I just remember pain....PAIN like I've never felt before in my whole life.  I don't remember the ambulance ride and I don't remember anything next until I was in the ER and the first "mean" Dr was telling them to just get XRAYS and my nurse was taking me over to get those. Then I remember how bad the XRAY technician told me she felt. She started to cry as people were leaving the busy hallways and finding another place to stand and hang out as they couldn't stand the screams of horrible, nightmarish pain that came from my Xray room and my mouth! *again...I don't really remember this but afterwards, Craig had told me the scenario of events that occurred that night and the next few days. 

   I'm not going into the details of the awful care that I received at St. Josephs hospital in Ypsilanti, MI. I've said that quite enough times and as I was in there for a week, they did nothing but some X-rays and to keep me "doped up" so that they didn't have to deal with me being "difficult". Hey, wait a minute~! Did I say that "I" was difficult?  Yes , indeed, it was me that was difficult while inpatient after that accident. I said and did things that were totally 100% unlike me and my husband kept on telling them that I was acting very different and something was really wrong with me! They just told him that it was from having an "abusive background history" and then they doped me up more and kept my torn rotator cuffs in braces so they couldn't move because if I tried to move either of my arms, I was in excruciating pain. OH and I couldn't stand up by myself and when I called the nurses they never came and I tried to go to the bathroom by myself and I hit the floor with my IV pole and was crying in horrible, terrible, unrelenting pain throughout my body from my foot to ankles, to both knees, lower back, upper back, both shoulders, arms, wrists, hands, neck and head! I had a swollen left face and temple so big that I couldn't bite down from the swelling! But no one was helping me...I was afraid....I was in horrible pain and the medication they were giving me was making me vomit all over the place! I hadn't been able to eat anything because I was so nauseous from the meds in the IV and the pain being out of control. My husband even asked for a "Psych" consult because I was acting so out of character. They came and these 3 Dr's stood at my bedside telling me that I was vomiting from my "abusive childhood" and that the vomiting was also the sign of an "eating disorder". Ok...OK..I was thin, I'll give 'em that but c'mon...I had  not eaten anything in days due to the pain and nausea and I was vomiting as they stood there talking to me! How in the world is that an "eating disorder"??? Excuse me??? My husband just shook his head and gave it up and got me out of there! We called the Neurologist who had known me when I dislocated my shoulder in my sleep, during a nightmare from PTSD; in October 1991. He got the "ball rolling" and everything started to happen then!

      He sent me for Neuro-psych testing because he could see that I wasn't my "old" self and my husband was telling him that I was forgetful and was having alot of memory and personality changes from prior to the accident. The tests came back showing that my short term memory is "in the toilet" (that is how they phrased it). Also, I have trouble "processing information" and some problems with being a bit over emotional. Then I had some tests done called "ENG" testing from the Ear, nose and throat Dr., who also does "head and neck " issues and that testing showed that my eyes were not "tracking" properly and my balance is "off" and my "Cerebellum was injured" and I suffered a "MILD Traumatic Brain Injury with damage to the Cerebellum and with a Central Dysfunction!" WOW...That made us cry a bit and tear up ; just the same as when the Dr. gave me the "permanent HC parking tag" for the car!  Something about the word "permanent" just sort of broke my husband and I into wee bit of tears for a moment or two. 

     Sooo we returned from testings,MRI's,CT's & "CT arthrogram's *(these are like old torture chamber tools that are now ancient and hardly ever used anymore because of the horrible pain they inflict on the patient). If you want information about these tests you can go ahead and "google" it because it's too horrifying to even think about writing it down for you here. Anyways, the tests all showed something wrong in each consecutive area. I had two torn rotator cuffs which had turned into "frozen shoulders" or aka "adhesive capsulitis". The only method for trying to fix that problem is PT, PT and more PT because surgery is very painful and usually they freeze back up again. I also was found to have: two torn Meniscus' in my knees with one being also a "Parrot beak tear", vision problems from the MTBI, Hearing loss/ bilateral sensory neural *moderate hearing loss (I was given 2 hearing aids to help with this problem, I should also note). I also had herniated discs in my neck and lower back and they were inoperable. Therefore I have to live with them/that forever and they get progressively worse from the Degenerative Disc Disease that I've gotten in my spine and neck from two separate car accident injury's (one MVA while living in AZ in 1982-83 and being struck from behind while sitting at a red light, by a drunk driver; and the other being this car accident in 2002). Along with this came the L-4,L-5 & S-1 herniated discs with L-5 Radiculopathy, which is a horrible nerve pain running from my lower tailbone through my leg and down into my right foot. It's horrible and I don't wish it on my worst enemy!

   After all of that I still was passing out quite often and I had done that a little bit prior to the MVA 2002 but afterwards, it seemed to be more often. I was in  brain injury rehab for 3 years on an outpatient basis and it didn't do much for me. They test you and try to help you improve your memory but pretty much they more or less help you to learn to deal with not being "yourself" anymore.  I had to see a "Neuro-cardiologist/EPS" Dr. Of course there is only one of those in the whole Country! In the USA there is only one Neuro-cardiologist who specialized in the whole "fainting phenomenon". In fact, his name is Dr. Blair Grubb, MD and he has written many books and publications but he also wrote a book called "The Fainting Phenomenon"! He is the BEST Dr. that I know of who treats "Dysautonamia" which is one of the illnesses that got worse for me after that MVA in 2002; due to the brain injury and where that was located in my Cerebellum. It was apparent that I had it slightly, before, but not to the extent that I got it afterwards.

   During the time that I was trying to get some help and was enrolled in the DMC's "brain injury rehab program-** 6 months in and out whether you improve or not!" I was very ill, fainting often and no one would help me or listen to me. It had gotten to the point that I think everyone thought there was just too much wrong and it just could not be "THAT" bad! So they all stopped listening to me. My daughters were telling me at home that I was "complaining about pain too much". My husband was trying his best but it just felt like I was in a black hole getting deeper and darker! 

     One day while strapped onto a bicycle at the DMC program, I yelled out to someone that "I don't feel very good!" and "I feel like I'm going to faint"!  No one listened to me at all and there I went... off of the bike and 1/2 onto the floor ;while still having my feet strapped onto the PT bicycle! Finally someone came over and got me off of the bike and onto a mat and took my blood pressure and Heart rate. My BP was 90/60 and my HR was only 23! I ended up at the hospital where they stablized me and my heart and blood pressure and called for an ambulance with a heart monitor because the first hospital didn't do pacemakers and the heart Dr. said that I needed a pacemaker! I was so afraid but they were being so nice to me at that small hospital while waiting for the ambulance to take me to a bigger hospital. My cardiologist met us there and they watched me overnight. The next morning the Dr. came in and told my husband and me that I needed to get a dual chamber pacemaker put in because my heart was having arrythmia's all night and stopping and my HR and BP were too dangerously low. You need to remember that I was still dealing with multiple pain in many parts of my body while enduring this surgery too! Afterwards as my luck would have it, I had these lightening bolt shocks in my heart/pacemaker. They kept me inpatient for 6 days which is 5 days longer  than usual for a pacemaker placement surgery. Mine was  different in that I had those "shocks" and they couldn't figure out what was causing it. Finally they discharged me and when I got home I went straight to my computer and googled my problem. I went to www.pacemakerclub.com and found a chat room. I was astounded to find that many many other people had that same "shock" feeling!! To my surprise they all said that it was nothing to worry about and that it was a "nerve" that had to have been touched or something during the pacemaker implantation. They told me it would take about one year for that nerve "zing" to go away. That's exactly what happened! Why didn't one Dr. even know about this? If it was on "google" and on the pacemakerclub.com; then why wasn't there even one Dr. that could've told me that information? I find it odd that not one Dr. knew about this or helped me; yet they even kept me for 6 days trying to figure it out! One of the EPS Dr's here in Michigan was even rude to me and tried to make me feel like it was all in my head. I was so upset and angry with him. I told the nurses and other Dr's that I would NOT see that Dr. again and if they sent him, I would not let him near me! I then wrote him a nice letter when I got home,after I'd  found out online what they should have been able to tell me all along!

     Awhile later or a few years later..is when I got sent to and seen by the famous and wonderful Dr. Blair Grubb in Toledo, Ohio. He is famous for figuring out  things about Dysautonamia and how to help people like me who's autonamic nervous systems stopped working and who have trouble with: Neurocardiogenic Syncope/NCS, POTS/Postural Orthostatic tachycardia syndrome and many of the other body functions that are affected. Things such as gastrointestinal tract, respiration and many other bodily systems are affected by this autonamic system dysfunction also as a result of the MTBI and the Car accident.

     After 5 surgeries including the pacemaker and including: my knees, shoulders (2 titanium screws), left face/cheek, and right foot; I was still in horrible pain and one of the worst sources of it was the right long thoracic nerve damage pain! My right scapula doesn't stay down and it has no nerve to hold it in and my right arm just hangs and hurts terribly. It is a nerve pain that makes my right arm feel very heavy and painful. I have a hard time even writing out a card or anything for any time at all. Therefore, as much as I'm not making this a whiney story of me complaining about all of my pain and injuries; I still haven't gotten to the final and greatest source of pain...yet!

   I will add that after my brain injury rehab, driver rehab, all of the surgeries and herniated discs, vision, hearing problems, long thoracic nerve damage and any and all other pain; I still ended up after my final surgery in April of 2007, getting the most horrible and painful progressive Neurological disease called "RSD/CRPS". It is also known as the ever painful #42 on the "McGill" pain scale, "Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome.  If you look at the "McGill" pain index you will see that RSD/CRPS is right up there towards the top of the pain scale with Cancer and amputation without anesthetic. Now lucky for me and most others, I don't have all of the symptoms all of the time; but I do have some of the symptoms most of the time! Mine has also progressed from affecting just my right foot following surgery there in 2007, my final of 5 surgeries after this car accident; to being "full body RSD/CRPS ". I ended up with the most debilitating and painful form of chronic pain known to mankind today. It not only affects the nerves but also there is pain and there are changes to the :skin, bones, muscles, tendons, nails, hair and just about everything! RSD  feels like you are on fire and ice at the same time! It is a deep unrelenting, burning pain that is worse than any kind of pain you could imagine.  

   Later this year they are planning to take out my pacemaker and put in  a newer dual chamber pacemaker. Dr. Grubb isn't pleased that mine was cut into my pectoral muscle and placed inside of the muscle and sewn into the pocket that they made for it. They said at the time, I was pretty thin and it would have been too vulnerable to getting hit or hurt and that's why they did this, to protect it. But Dr. Grubb says that he's a bit concerned that later this year he'll have to put in a new pacemaker and cut the muscle again and clean it all out. He doesn't wish to cut the muscle every 8 yrs and clean it out and re do this every time; as it is a much longer and very painful healing process.  He is thinking he will  put the new pacemaker into a kind of "rawhide" type bag that goes right under my skin in or about the same place.

   As you can read for yourself, many medical issues have occurred due to that awful car accident in 2002. It had a rolling effect which included: a heart attack in 2005 after my oldest daughter left home because she "didn't like our rules" and because I heard from others that she just "wishes that I would have died in that car accident because the MTBI made me "crazy"( according to her)! I forget things and I have to write them down now, but I'm not crazy! I have a Psychologist who's known our family and me for over 10 yrs now. He even wrote on his letterhead stationary something just for me because I was so heartbroken when I heard that my daughter said those things about me. He wrote on his own paper and signed  his name at the bottom. He wrote: "Suzanne Stewart is not crazy, not a liar and not a bad person!"

   I've been through so much and I try to not complain but use it for the good of others  instead. I have an online support group for RSD/CRPS and a "cause" group to raise money for RSDHOPE.ORG and I've been a "chemo-angel" for over 5 yrs now also.  I try to keep busy and keep my mind off of the pain emotionally and the physical. The only way I survive is by having the Lord in my heart and in my Life. He carries me when I cannot do it one more hour or one more moment! I know he is here with me or I'd have never made it this far. 

   I almost forgot to mention that a year after the heart attack, I also then had a CVA or a stroke in 2006, while at home on a Saturday morning with my younger daughter and my husband as we were all eating breakfast. I still have residual problems from that also. I had a weaker right side already from the car accident and it became worse due to the stroke being caused from the Atrial fibrillation that I acquired after the heart attack(a small clot from the atrial fib in my heart, went  to my left brain, did its damage and then went through, luckily for me). I had to be put on blood thinners and I must take my blood weekly.  I have to be very careful always that I don't bleed or cut myself.  My speech was slurred and I said wrong words that I didn't mean to say but I had no control over it. Since then, it has gotten much better but I still slur when I'm tired. 

    Well, back to my oldest daughter.  She and my father and her father (my abusive ex husband and my abusive father) all lied to people at her wedding and told the same story about me being "crazy". An MTBI does NOT mean that I am "crazy"! It means that I got hurt in the part of my brain that makes me remember new information so I forget things and have to write things down on paper. That hurt me beyond anything else I can think of and she became estranged with us. It's been 7 yrs now and she still will not take any responsibility for what she has done, nor will she apologize and she blames everything on totally everyone else except herself. The cardiologist said that my heart attack was his "first case of broken heart syndrome". He had known my daughters as they grew up and I brought them in for my check ups. I had a small problem before the car accident which blew up into a much bigger problem afterwards. I took my girls with me and I was a single mom who took my daughters with me everywhere, including to my Dr appointments. Usually they didn't come into the room but still the cardiologist got to know them and my love for them and their love for me. He said he could "see it in my eyes and face" how heartbroken I was when I came in during the time right after my oldest daughter had just recently moved out in such a horrible way. Then she estranged herself from us. Later that year when Mother's day came around, that's when my "broken heart" really had a real heart attack because I felt that the baby that I gave birth to and had raised mostly on my own for many years, just stopped loving me and left because I got hurt and she chose to do "bad behaviors" and she chose to not follow our house rules that are pretty much the same rules as other "normal" loving parents.

     Thank you for taking your precious time to read my stories and my blog! If you ever have any questions please don't hesitate to ask. Thank you again...

      Have a lovely day and I'll be seeing you!! Love, Suzanne 

The letter from Dr K, the Psychologist. He wrote it for me when I wasn't invited to my daughters wedding.

This is me in my motorized scooter on our Trip to Boston 2010

Amy, my youngest with her pet African Grey "Matilda"