Update On Upcoming Skull-Neuro-Ear Surgery

Hello Everyone !

Above is a 37 second update from my appointment today 6-10-19. Thank you for the outpouring of love ❤️ and support! You’re the Best followers/fans/friends ever!!

**ADDENDUM: SURGERY WILL BE JULY 26, 2019** they scheduled it today…. JUST WANTED TO UPDATE YOU ALL… sending peace, hope, love & Light…

Feel free to email me: tearsoftruth@yahoo.com

Love ❤️


Heres my Instagram post today too:
So I saw the Skull base/neuro/Ear surgeon today. I will be having the tumor removed soon. I will have a Tympanoplasty(they’ll reconstruct my eardrum using a “disc” made from cartledge & Skull fascia. This is to prevent this from returning. The 3 little bones needed for hearing are diseased. I’ll be getting possibly prosthetic bones? Also I’ll be having a “Mastoidectomy”! Removal of the diseased part of the mastoid bone. It may make my HOH/ “hearing”worse or same but must do this because if it gets into the brain it can kill me! It’s really scary! Many times people hear nothing afterwards, many times people get extreme dry mouth from damage to salivary glands during surgery. Many people get worse “white noise” or pulsating in ear after surgery. Many people get a strange taste for months or forever. They try to not injure the facial nerves by doing EMG during entire surgery, but it can happen… I’m honestly not scared of the white noise or pulsating or worse/same HoH —but I’m frightened of the brain surgery part. They say they’ll be conservative with my hair being cut but still a 2 finger radius around my ear will be cut… just wanted to update everyone. It will be in 2 months because it’s very slow growing tumor and may have been there my whole life?? But it takes time to get the 4 Drs clearances that I need and also his schedule is booked until then. Now I’m happy to have my Summer but still scared because I now have too much time to be thinking about it all!

ASL is a Cultural Identityj

I love American Sign Language 🤟🏼 ! I am a part of the culture and I’ve been since I was 11 years old! I was mildly hard of hearing due to many ruptured eardrums, untreated. (long story-see private posts and just email me for the password. Email me at: ASLSuzyQ@gmail.com)

Hearing or loss of it, is not a handicap and neither is it a weakness or a disability. Deafness is a cultural identity. I have had a tumor (Cholesteatoma) in my right ear since approximately 2014-2015. I didn’t know it was there. My hearing diminished even more until it was completely gone in right ear and moderate/severe loss in left ear. I recently had surgery to remove the Cholesteatoma, but it was very large & now (7-2019), my right ear is closed. But I became moderate Deaf in my right ear and Severe in my left; after a Traumatic brain injury due to a motor vehicle accident in 2002! I am proud to be in a culture of warriors and Deaf historians! The music & words are all a bit mushed together. I miss a lot in verbal conversations. I nod my head and hope for the best. I feel a bit lost sometimes in such instances. I’m so very lucky to know what I do know about the naturally formed language of ASL. I’m fortunate for my experience as an Interpreter at a hospital and at Universities and school settings in the past. Ironic isn’t it, how life can take a turn?

But what does bother me is when people pretend to know ASL, because they know “signs”. The first lesson in ASL is that a sign does not equal a word! A sign equals a concept! I go on YouTube all of the time and I see people acting as though they know the language. They post a song and then post a “tutorial ” and then proceed to teach others incorrect signs and fake ASL; which is PSE at best. But do you know that PSE is not a language? It’s just a mush mash of signs in English word order. So then, you’ve taken a beautiful Language like ASL, and desecrated it! Anyone can do anything they want because it’s the internet. If you want to post songs and such in “Sign Language “, then by all means, feel free. Just write up a bio and explain that you’re just trying or you’re practicing your use of ASL. Say that you’re doing your best or that you are learning the language. But don’t call it ASL, unless it is. Then please do not post a tutorial unless you’re truly sure it’s correct and grammatical ASL. It is just the respectful thing to do. We don’t like our language polluted & then taught incorrectly to others who are vulnerable and learning.

I don’t make tutorials because each person may sign the same song a bit differently. It’s a choice in lots of instances; a choice of which signs for the concepts you want to convey.

Yes, please learn the beautiful language of American Sign Language, ASL! But don’t be arrogant and don’t be a student teaching other students! Let the teachers, native ASL language users, Deaf community & CODA’s teach those who wish to learn! I honestly do not mean to dissuade anyone from making videos and having fun. I only mean to please not make tutorials if you truly don’t know for sure that it’s ASL. Don’t be the “blind leading the blind”! That’s what I’m getting at most of all, I suppose.

Feel free to join my ASLExpress group on Facebook. We are a group of people who love the language of ASL. We enjoy Deaf culture and we share communications and stories in ASL. We are a group of Deaf, HH and Hearing persons who love, use and respect the language. We are a combination of all levels of ASL users; from beginners through native Deaf. We like to teach, learn and make friends.

I also have a page called “ASLSUZYQ”; on Facebook, Instagram, Tiktok & Tumblr! I don’t claim to know it all. I learn new signs everyday! I’m always willing to help and take advice from the Deaf “elders” in ASL! I’m actually taking an online course in ASL gloss for songs. It’s called “Beyond Words” with Rosa Lee Timm! It’s a blast, though due to chronic pain and illnesses, I’m a bit behind. Thanks to the Internet, I can go at my own pace.

One Call Away in ASL is my new ASL Cover on my YouTube Channel. This link will take you to my YouTube Channel @ASLSuzyQ, My ASLSUZYQ Youtube Channel !

Below is my granddaughter &!me (I actually have 3 granddaughters & 1 grandson)! I’m teaching them ASL while they’re small because young minds are like sponges. The littlest ones learn the language so fast!

From Mini Van to Wheelchair In 10 Seconds!

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I awaken each day; the first thing that I do is cry. I cry because I’m in pain and it is as though someone stepped on my back in the night and feels “broken”.  My husband hears my cries and he goes and gets my pain medication. Medication that I’ve taken since 2005; and never more but sometimes less. He proceeds to start making breakfast, coffee and give tap water to our Cat. It’s her favorite thing in the morning aside from running up the stairs to get me after about 20-30 minutes. My husband says “Luna, go and get Momma”!  She bolts up the stairs and “Meows” at me to get up. She doesn’t stop until I am upright and together we go down the stairs. It’s almost 7:00 am, and most likely I just went to bed at 4:00 am. I have some tea and toast. We chat a bit and he goes to work.

I have choices to make and they are not easy ones. My oldest daughter only lives 2 or 3 blocks away, with her husband and our two eldest granddaughters, ages 4 and 2 1/2.  We see each other often but it’s so hard for me to fight the deep, deep fatigue and pain to do  a lot of outings and I just am not able to babysit alone, without my husband there.  I think it upsets her and I feel so bad inside because I cannot do what I wish I could do. The first year and a half that we were reunited (**my daughter left home at age 18 and was away for 10 years. This is not a story about those very sad times. This is about the reuniting of a family that was broken because of a car accident.  My daughters were used to me being and doing everything and suddenly I could not do anything, not even dress myself. My eldest ran from the pain and surgeries), I think I ran on adrenaline.  I saw her/them daily and then afterwards, I came home and crashed. Was that fair to my husband? No, it wasn’t! Did he say one word about it to me? No, because he was so happy to see my heart whole again. It was broken for 10 years!

So now it’s been about 3 years and so much has happened. I lost my Dr. of 12 years and the old pain medications that made easier for me to do more, it seemed.  My pain Dr. is much better now and the regimen that I’m on is safer.  But I’m unable to do the activities that I wish to do with them.  If I was the person that I had been, I would be making snow angels with them in the snow.  I’d be baking cookies and running around playing tag and “Duck, Duck Goose”. I do play some “sit down” (for me) games with them and we have tea parties. We watch Disney movies and I love it when they sit close to me and play with my hair. I used to take my walker to the zoo or on daily outings. I sat down when I was tired and I just was happy to be together.  I’m still so very happy to have everyone together. I could never have had a happy life without both of my daughters and my grandchildren it.

Time has changed me and now I am tired and in pain much faster;  more deep than before. In 2013, my CRPS changed from being in my feet and knees; to “severe systemic and disseminated”.  It happened after what was supposed to be a 45 minute surgery but turned out to be a 3 hour heart and pectoral muscle rebuild surgery.  I’ve never recovered and have felt a deep deep fatigue since then. If I do something for 2 hours one day, then I’m in my recliner for the rest of the day. I don’t want it to be this way, I don’t like it at all.  I want to spend a whole day at the zoo with my granddaughters.  I feel that my oldest daughter gets so frustrated when I cannot do the things I pushed myself to do at the beginning.  Nobody understands “Invisible Illnesses”, not even our own families or friends. We used to go to dinner each Friday with my best friend and her husband. I’ve cancelled a few times in this past year and now I can feel a difference.  Things that I wish I could do, I no longer am able to do.  I love and look forward to babysitting when my husband is home and he is with me.  He is there so that when I start to be too tired and in too much pain, he takes over.

But I lose friends and have lost people related to me. My own family cousin, who’d been my best friend for years; stopped talking with us after the car accident.  My husband had called and asked her to come over because I could not be left alone at the beginning. I couldn’t dress or undress myself.  I couldn’t even go to the rest room without help.  My cousin and another person who was a good friend of ours, told Craig “No, I just can’t help because it’s too sad.  When I get sad, then my family is sad and I cannot do that to them.” She took herself out of my life and so did the rest of my cousins, and family.  I called my own brother after the accident from the hospital. I had been unconscious and when I finally got to a room, I tried to reach for the phone and missed. I hit my cheek instead.  I called the only number that stuck in my head due to the TBI, it was my oldest brother. He answered the phone and I told him I ‘d been in a car accident, a bad one. I told him I was in the hospital and he answered back by saying, “Oh…you need someone? …..CLICK” and he hung up on me. Craig is my hero and the only person who’s ever truly loved me unconditionally. He’s there when I need him and when I think I don’t think I need him so much.


The Short Version of “My RSD/CRPSII Journey”

Photo Sep 13, 6 45 57 PMHello Luvs, This is just an updated version of a Facebook note from about 5 or 6 years ago. I wanted to just update the info a little and my age etc.  I don’t think I’d ever written just a short and simple version of my RSD/CRPSII  journey. I’ve written about other things and ailments  and such….but this is just a re-copy of a simple note from an old Facebook page of mine. So here it is and I’m just sharing it with you. …Now, remember…it’s not a well written or even well planned out or well thought about “blog ” post, but just a Facebook note from ages ago. I only wanted to share because I just realized that some people don’t really know how I got the RSD/CRPSII.  So here you go…I hope it’s not too boring..

My name is Suzanne and I am 52 years old. I have written other “notes” before but they all included other things that have happened to me in my lifetime and not “just” the RSD/CRPS  journey. I thought I would just write a note about my journey with RSD/CRPS and not any of the other things going on medically or regarding the horrible car accident that I was in when a man ran a red light on August 11,2002. The accident changed my life completely so I do have to give an introduction about it and then I’ll stick to the RSD/CRPSII.                                                                                                                    I’ve had 12 surgeries & suffered an MTBI with brain injury rehab for 3 yrs, Worsened Dysautonomia/POTS/NCS with a pacemaker.  I’ve got:  nerve damage, degenerative disc disease, leg braces/AFO’s.  I was in wheelchair then walker and now I usually use a cane but still keep the wheelchair always with us in the car. I have a motorized scooter for long distances…Oh there is so much more..I just wanted to give you a little insight is to the things that were bad enough and then in 2007, April; I had surgery on my right foot. It was going to be my last surgery for awhile and then in June 2007 after it wouldn’t stop hurting, burning and burning and being “on fire” and being “purple” and “hot” etc…I got the “news” from the foot surgeon that did the surgery. She told me I had RSD/CRPS or “Reflex sympathetic dystrophy”. I hadn’t ever heard of it before. She offered me “lyrica” and some lidoderm patches. I couldn’t take the Lyrica but I did try the patches, they didn’t work at all. I was already on mega pain medication from the chronic pain from the car accident in 2002. The pain Dr already had tried everything on me BEFORE I even got the RSD! He wanted me to get an intrathecal pain pump. They set up an appointment with my husband and I and talked about all of it with us. I decided that although I didn’t really want another piece of metal (as big as a hockey puck and I’m only a tiny woman), bigger than my pacemaker and I had screws in my shoulder already also. I would let them set up the pump “trials” just to see if it would work. I am always willing to try things to make sure I’ve exhausted all options.

The night before the pump trials, the Insurace company called and ….well, no …wait…actually the pain Dr’s office called and told me the auto insurance company called them and denied the pump totally! They said they no longer could help me because they’ve tried everything they could. Now remember this was BEFORE I ever got the RSD! So the pain Dr did continue for awhile to call my GP and they’d discuss pain meds and what I should do and finally I just let my GP be the “eye in the middle of the storm” for me. He’s helped me so much and I owe him for that, he is a wonderful GP. Soooo…then came that day in June 2007 when I was given the diagnosis of “RSD” along with the lidoderm patch’s and sent on my way! I had no idea what RSD was and didnt have a clue at all and she didn’t tell me either. I decided NOT to look it up online because whenever I used to do that, I would get scared and make myself worry and so I just didnt do anything for awhile. The pain in my foot got worse and redder and more purple and it was as if someone poured gasoline on my foot and set me on fire! I put an ice pad, a soft pad that is cold from physical therapy on it and wrapped it in that sometimes. I swear I could almost hear a “ssssssstttttt”  or sizzling sound coming from the cold hitting the heat! It did help a bit and then I found out that you are not supposed to use “ice” for RSD or it can spread or make it worse. Well, I don’t consider this “ice” but just a cold pad, so I used it and I still do.

Then I went back a few months later crying to the GP and crying to the foot surgeon so they sent me to a foot/ankle orthopedic DR. He came into the room and I already had my socks and shoes off. He said first thing to me “This is classic RSD on your right foot”! Oh my gosh!!! How did he do that? So he also noticed that my foot drop was worse and I got ordered prescriptions for 2 foot/ankle orthotic braces or “AFO’s” to help my foot not drag. They also got me some different than the ones I wore the first few years after the car accident. These ones didn’t touch the top of my foot which was essential due to the pain!2012-12-19 00.40.32-1

I then had an appointment with a Neurologist and a Rheumatologist for other reasons and then they told me that I had “RSD or CRPS” also! So I had several Dr’s tell me that I have it and the foot/ankle orthopedic Dr did give me a brochure or a copy of some written material on RSD and it blew my mind! As time went on, I started noticing my other foot was turning purple, burning too. Not quite as bad as the other and not 100% of the time, but if I walked any amount of time, it would be so awful later on that day or evening. Then the left knee that I had surgery in prior to the diagnosis of RSD, but due to injuries from that car accident; then it started to burn and swell and turn purple! I didn’t know what was going on and at the same time, I had gotten somehow an infection of some sort in my mouth and then the RSD went to my mouth and now i have to be careful when it flares and I have prescription toothpaste and trays for my teeth made special for me . The dentist made these and i put flouride gel in them for 5 mins each time (supposed to be twice a day but I cant do that so i do it when i can) and it helps my teeth not decay b/c I have a hard time brushing even though I still do anyways. The RSD has since gone to my upper back and no one can rub it or when I shower it feels like bullets pelting my back and the nice,soft towel feels like sandpaper! Then the worst part besides the right foot being the worst part, was this past April 2009. One evening my head hit the desk soooo hard that it felt as if someone had come up behind me and pushed it down as hard as possible onto the desk. I didnt actually “feel” a person or a hand or anything, but my head just went “plunk” down onto the desk. I started to cry because it hurt more than anything. I was terribly bruised, black eye and huge bump. I am on Coumadin already (a blood thinner for a problem with my heart called “atrial fibrillation) so it bruised something awful and hurt even worse than it looked. Since that day things started a downward spiral again. My eye on the right side won’t blink but 20% and the left only 80%. MY eyes look very strange when looking at me when I’m talking now because one eye blinks and the other one doesn’t. I have certain days where the eye(s) flare up and get all swollen and red and hurt and burn and stab with pain. The pain in my eyes (right worse) is very strong and burns, burns, burns!! Guess what? I have been to an Opthymologist, neurologist again, my GP and now they’re sending me to a Neuro-Opthymologist next week. The first three Dr’s seem to agree with me ,that RSD has now spread to my eyes. Though the new neurologist told me that “RSD spreads very rarely..hmmm” ..I’m not sure where he got that from , but I’ve done my own research and it does spread 70% of the time according to the things that I have read and the people i know who have it! Now I’m getting sores on my lower legs that won’t heal and finding out that is also part of RSD. I have ulcers on my right foot that won’t heal and I have cream after cream to soothe it for 5 minutes,but that’s about it.

I have a great GP and I am on a moderately good pain regiment now. I have good days and bad days. I have lost so much I lost my cousin who used to go with me to breakfast and shopping and things. After the car accident she said to me :”I can’t see you anymore”….I asked her “why not? what did I do?”…she said “seeing you in pain like this makes me sad, when I’m sad it brings me down and when I’m down it brings my family down so I cant see you anymore”….I’ve run into her at a few family outings and funerals. I’ve tried to “apologize” for whatever I don’t even know what I did?? I tried to email and talk to her. She still won’t talk to me to this day and I never ever said or did anything to her ever that was not kind.

So there you have it..this is my journey with RSD/CRPS. I had to mention the car accident because it does have its place with all of this. I got a Traumatic brain injury and something called “Dysautonamia” from the car accident/brain injury. I also found out that a large percentage of people who have RSD , also have “Dysautonamia”. It is when your Autonamic nervous system shuts down and doesn’t work anymore. It includes : memory,vision, heart rate/blood pressure, gut, motility, many other bodily functions! I had to see a Neuro-Cardiologist, a world renowned Dr in Toledo,OH at the University of Toledo Medical Center and had to get a pacemaker etc…

I’m very lucky to have a wonderful team of Dr’s and a wonderful husband,Craig, of 17 years now.  It’s not the quantity of people in your life that matters, but the quality. I have a great GP and some others. But I have the kindest, most loving husband who is gentle and helpful and wonderful.  I am blessed to have him and some dear friends that are always as near as a phone call. We just had a beautiful wedding for my youngest daughter and I had a bridal shower for her and she married a really nice guy. They are so cute together. They are busy and live an hour and half away, but they have their young lives to live right now.. I pray for the day that my other daughter & I can be mended in our hearts and be even better than what we once had been!. She has never left my mind, my heart or my soul for a moment!

2012-10-11 12.42.40

The FIRE of RSD/CRPS…”STOP, Drop and Write”…..

Hello Luvs,
This month is “Nervember” also usually known by non-RSD/CRPS’ers as “November”! Actually the reason that “we RSD/CRPS’ers” call it “NERVEMBER” is because this horribly, painful, burning, fire-like feeling disease is a Nerve & Auto-immune disorder and November is “RSD/CRPS Awareness Month”! I know some of you may have never heard of RSD/CRPS or “Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome” *aka Disease now instead of Syndrome. Why should you know what it is? I had never heard of it until 2007 when I originally was diagnosed with it. But you see, I promised that during this month of RSD/CRPS (*”they” cannot decide what to actually call it?) that I would try to reach out EACH and EVERY day to at least one person, to spread awareness and get support for this painful nerve disease. So far, I’m being true to the CAUSE and I’ve been posting or speaking to people every day about it; along with asking people to then tell others about it. It’s sort of like a school “fan out”….when you tell one person and then ask them to tell another and then another and people tell more people and it spreads like “wildfire”…not to make an assimilation or anything…or maybe so? …LOL..
I’m not going to write about things that I’m doing this month to bore you, but I do want to at least get the “word” out about this disease and I do want to tell you about my fundraiser(s). I have so much more to tell you, so I will definitely make this part short. Than maybe…just maybe…I can “wow” you with some fantastic words of wisdom…well…OK…maybe not…but at least I’m friendly? I have a fundraiser going this month and it is a bit like 2 in 1!! I have several stretchy braided type of orange and white bracelets that someone has made for just this fundraiser, for me. I am a jewelry maker, but with the RSD/CRPS in my hands as well as OA and RA, I could not make these this time. Have no fear, I have 10 of them and if you send in just 1$ or $1.00 or “one dollar”, it gets you “ONE” chance to win one of these nice RSD/CRPS support/awareness bracelets! If you send in more than $1.00, you get that many # of chances = to the # of dollars that you send in to me for this fundraiser. Then, if you send in $5.00 or more, you get your name in that drawing still, for the number of chances that = the number of dollars you send in…AND you get into the drawing for…and get one chance to win the handmade (by me!!) Swarovski Crystal bracelet. It is made with the finest Swarovski crystals in the color rightly named “fire” and it is an orange with a bit of red and tiny bit of yellow. It does look like a flame, or I think so. It also has the handpainted glass or ceramic awareness beads in clear with orange ribbon or white bead with orange ribbon painted on it. I usually put on a very tight or strong magnetic closure /clasp so you can put it on yourself if you are disabled. I usually put a “HOPE” word bead on it , embedded in it and/or an angel with wings and a halo etc…It really is pretty and no two are exactly the same. So you might win that if you send if $5.00 or more! Then 2nd prize for the $5.00 or more, drawing, is a pair of RSD/CRPS awareness earrings (that match pretty close to the bracelet)OR if you are a man and you win, if you don’t want the earrings for your wife or girlfriend or daughter or friend, then you can choose an RSD/CRPS key chain for awareness instead….Lastly, 3rd prize will be what is left after 2nd prize…either an RSD/CRPS awareness keychain or a pair of awareness earrings! If you would like to participate, you can just email me at: jewelrymkr@aol.com and please think about helping…
OK so…if you skipped reading about the fundraiser, I totally understand…but…will you please go back and read it for me??? Ha ha…just kidding…
I thought that I’ve never told you exactly how my story started with the RSD/CRPS. I believe that Awareness month would be a good time to tell you a little bit more about my own struggles and pain with this and a few other “Invisible Diseases”. ***OH …OH…I almost forgot to tell you…Guess what??? I was nominated again this year for a “WEGO HEALTH” Activist Award…this year it is for the “Best Kept Secret”…ha ha…I’m not quite sure that someone with 3 blogs, a private blog, a photo blog (= 5 blogs total), an “ABOUT ME” page, Several Pinterest Health Boards * for Dysautonomia/POTS, RSD/CRPS, RA, PAIN etc.., 2 support groups-one on Facebook with 820 people and 1 on Google + with 100 people, You Tube @Suzydukettes channel with a ton of information about pain, Invisible illnesses and RSD/CRPS, a Stumble Upon site, A Facebook “support In Jewelry” page, a Tumblr blog “Support IN Jewelry” or tumblr.com/supportinjewelry, and more…can be a “secret”…LOL…I just think it’s funny but also I’m honored and tickled to death!
I was in the car with my husband and we were going to go out to dinner in Plymouth, MI to the “Box Bar”; after spending the day at the “Milford Memory Daze” festival of artists, food and fun! We had just been walking together, holding hands while sipping on a lemonade together. Within what seemed a few moments time, we were “hit” by a man who had driven right through a red light, as we were going through the same intersection on a green light! Time seemed to go in slow motion as I look back on that day. Somehow I knew just a second or so before impact, that “if” I made it through this, my/our life/lives were going to be different. My life did not flash before my eyes and I saw no angels or bright lights…until I awoke on the ground ???how many minutes afterwards! I awoke to lying on the ground but on a back board, with my neck in a brace and my body tied down to the board. I could not see, except for the bright sun and some “blue”, which happened to be the Policemen and Paramedics trying to help us/me. I was scared because I couldn’t see anything really, it was all blurry except what I’ve mentioned. I was calling for my husband and asking for him and yelling out his name. I had to know that he was OK. I heard the Policemen telling him to “get away from her, Sir, please”. I guess they told him that I was better off not having him there near me? I’m unsure why they thought that, but he said that I was being worked on and thrashing a little bit; to where I cut my chin and was bleeding from the neck brace. I hate that “tied down” feeling and was starting to get hysterical because I was afraid and couldn’t move and I wanted my husband.
I don’t remember the ambulance ride, but then I do remember as I went “in and Out” of consciousness in the E.R. at St. Joe’s hospital here in Ann Arbor, MI. I remember a really nice male nurse who told off a Dr. who was in a hurry to get home and who was going to just sent me home like that! The nurse was yelling at him and saying that “she cannot remember or think or anything, she is in so much pain that she cannot even get up, we cannot send her home! So just in a knick of time, a trauma Dr. came in and started everything rolling! She did more X-rays and CT scan and my husband said that people were leaving the hallways near the X-ray room because I was screaming as they moved my body around a bit. I was admitted to the general medicine floor and was there for almost a week. I couldn’t even get up by myself to go to the restroom. I was on IV’s and it was a horrible experience. Since then, I must say that I’ve had a couple of my surgeries at St. Joes, and everyone has been better than kind to me. But that week it was horrible. I wasn’t myself, I couldn’t think right. I then spent the next 3 years in TBI *traumatic brain injury rehabilitation. I went daily until about 3:00-3:30 pm, from 9 am. I did this from about 2003 (*because I tried the DMC rehab for both physical and brain injuries first. It was a place from HELL. The administrator pretended to be nice until I went into their program. I was trying new meds and getting ill daily and they thought I was “faking” or something? I was hanging over the toilet bowl, sick…so very sick and vomiting. They wanted me to make cookies to try and help my 2 frozen shoulders and all of my other injuries. Little did I know that the program they had was a “6 months and you’re OUT whether you are better or not !!! They don’t care and didn’t care if I got better at all. According to them, I wasn’t getting better FAST enough! They strapped me on an exercise bike and left me as I was asking for help and nobody came, I passed out and hit the floor; giving me more pain than I started with. The P.T. “Polly” was famous for being a P.T. for one of the Detroit Red Wings, NHL players. She was rigorous and grueling and pushed me much more than was good for me and I got worse instead of better. I couldn’t even put my clothes on and off by myself due to pain in : both shoulders, a long thoracic 8″ nerve injury, both knees, lower lumbar spine w/herniated and bulging discs, cervical spine the same thing and right wrist, right ankle, neck , eyes, ears and to top it off, I was having little seizures for the first 6 months! I had so many tests once I got out of that awful program, I found a good nurse manager who helped me get help, answers and the surgeries and brain injury therapy I needed.
This writing does no justice for the absolute “hell” that I feel I went through going from the awful hospital stay, the terrible DMC program and the many many Physicians that I had to see, until I realized that “YOU aren’t stuck with the first Dr’s you see!! YOU HAVE TO BE YOUR OWN ADVOCATE! YOU KNOW YOURSELF AND HOW YOU FEEL….YOU know how you were before and how you are now! You never have to “settle” for some Dr. who thinks that because he spent several years in Medical school, that he’s better than most but has not one ounce of empathy in his demeanor!! I was feeling like giving up…I had been to so many Dr’s, to Cleveland clinic and just too many hospitals. Did I ever tell you that I’d been to several big Medical centers for my left shoulder, just one of my injuries. I complained about a ‘shock’ running down my arm when I straightened it. One shoulder Dr., about the 3rd or 4th one that I went to (because I knew something was not right, but I felt so disbelieved…)…he was an Orthopedic specialist…he looked me in the eye and while I was crying softly because he’d just told me that he thought it was “nothing”; he said to me “What part of “I CANT FIX IT” don’t you understand?…Is IT YOUR BRAIN INJURY???” Oh My Gosh!…that was about the nastiest thing that a Dr.’s ever said to me…I wasn’t going to try again, but decided ONE MORE TIME, and I was done!! I went to Providence in Novi, MI. I saw a Dr. J. M. and he was the nicest Dr. and he took my left shoulder and touched it in a certain way and said “does this hurt?” I shouted out a bit, because it hurt very much! He knew right away that I had had a ruptured biceps tendon!! I’d had it for over a year before someone finally listened to me and was willing to help me. I think that I just had so many, too many injuries and so much going on with my brain injury, forgetting things, balance and falling issues, heart issues, loads of nerve issues, discs bulging and herniated and so much more; that the medical professionals, or MOST of them just looked at me and wanted to “run”!!
I finally had a great “team” in place, with my primary care Dr., my pain Dr., Orthopedic shoulder, hand & knee Dr’s, Cardiologist, Neurologist, Neuro Cardiologist and more. Things started going wonderfully as soon as I had them in my “corner”! In these years since that first day in the E.R. with my MVA, I’ve had 10 surgeries, going on my 11th tomorrow! Yes, tomorrow, November 11, 2013, I’m going in for a screw in my upper jaw. The oral surgeon didn’t feel comfortable doing surgery on me in his office due to my having had a heart attack in ’05, a CVA or stroke in ’06 and having “Long QT syndrome”,(which there are no symptoms for, but can cause sudden cardiac death). So I have to have this done in the main hospital, under general anesthesia and I have to have two anesthesiologists present!
I will end this post in just a moment, but before I finish today’s thoughts, I wanted to just tell someone…maybe even someone who might care…..*I guess I say that because my oldest daughter, who left home 9 years ago, estranged herself from me/us to be in the company of all of my abusers –because they didn’t love her enough to care about her doing illegal/immoral things and I DID!! But one time …a few years later, she called my voicemail and left a message that was heartless and bone chilling when I heard the words of my little girl, my eldest girl, who was my best friend and daughter and my everything (as is her younger sister)..she said “SUZANNE (she didn’t call me “mom”)…Why do you think people care about you? THEY DON’T”….It was heartbreaking after I’d carried her 9 mos, had a C-section, took her to “mommy N me classes”, took her to pre-school and helped, took forgotten homework to school and had to leave my own job 35-40 minutes away and drive to our apt. to get it and then drive to her school, so she wouldnt’ get in trouble! I went to every baseball game, swim meet (even in a wheelchair after that car accident!!), chorus concert etc…I never missed anything because she means everything to me…she always will ……and my heart still aches and my heart attack was considered to be from “broken heart syndrome”. It was still very much a heart attack but now I know that people can truly die from a “broken Heart”!! I’m glad I didn’t die because I’m here with my soul-mate, my husband, Craig and Im able to still be there for my other daugther, my baby girl. We are still BFF’s and though she lives a little far from home, we talk on facetime and see each other as much as possible. WE are even planning a beautiful wedding for her shortly. She found a wonderful young man and they are going to be so happy . I can see that they are soul-mates! I’m so very happy that they’ve found each other and they share God in their lives.***……
…..But I just wanted to tell someone that I do try not to feel sorry for myself, I try to help others, do fundraisers for my invisible diseases and I don’t give up …not ever! When I think about all of the things that have happened just since the MVA in 2002, it makes me just want to cry. Let alone the abuse and pain I endured at the hands of my abusive family, and my ex’s, for all of those
years prior to meeting Craig, my husband & soul-mate of 17 years almost. I just feel that I’ve been through way too much for one person and though I try not to wallow in it…I can’t help but think about it the night before yet another surgery. I mean….I had abusive family growing up (the SSDI people AND my Psychologist have told me that I’m the “worst childhood case of trauma/abuse that they’ve seen in 36 years!), I married when I was 20 yrs old only to move in with another abuser. I got taken in quickly by the church..they told me that “God wouldn’t want me to stay with someone who hurts me like that”! I then moved to AZ and lived with my aunt and uncle there, while working at a school for the Deaf. I came home after a year or so because my brother was marrying my best friend. I then remarried at age 22 and I was with my daughters’ father for 8 years, while being abused, mistreated, cheated on and horrified for almost all of those years! I left with my 2 daughters and was a single mother, working full time for several years. I went to part time for awhile just to have Fridays off, to be able to help out in their school or with their classrooms. I had so wanted to always be a “stay at home mom”. All I ever wanted in life was to be a mother and a sign language interpreter…I got to do both! But they both got taken away too early. I had to go to work full time and I couldn’t do interpreting due to lack of insurance etc. Then after the brain injury, I could and can still remember the signs, but I am totally unable to interpret any longer due to the lack of concentration and inability to listen, **(hearing loss with my ears), have the language go into my brain, translate it into ASL and have it come out of my hands. MY oldest got taken away from me due to her own choice, at age 18. She’s now 28 years old almost; and I miss her every day . Not a day goes by that she isn’t in my heart, mind and soul. Then I lost my mom to colon cancer in 2002, she was 71 years old. She had been abusive to me, but I still loved her and love her. She was still the only mom that I had. There were some times that were good, but few and far between. After my mother died, my father and brothers proceeded to be even more horrible and evil towards me. They treated me inhumanely and succeeded in turning all the rest or most of the rest, of my Aunts, Uncles and cousins; especially on my mother’s side, against me! They…or my dad didn’t want or doesn’t want them to talk to me because he’s afraid that I might “talk” or tell them the truth about stuff that happened in our home! What better way than to turn them against me?
I went through the whole car accident event and all of the surgeries and injuries that followed, even through to today; all by myself with no family there for me at all. Well, not any of my biological family. Lucky for me, I have my wonderful soul-mate and husband and my youngest daughter who has stood by my side. I thank God every day for having them in my life. I’ve turned the horrifying situations of my past and even the ongoing pain & fear of the events of today, into a bit more positive engery. I became a “chemo-angel”, card -angel, special assignment angel, and prayer angel for a non profit program for chemo therapy patients with Cancer. I became a Mentor for newly diagnosed RSD/CRPS patients. I help them get adjusted to their fears and new life with so much pain; the burning fire nerve pain of RSD/CRPS. I started a CAUSE to raise funds for finding a cure for this nasty disease. I started two support groups to help others deal with any and all “Invisible Diseases”. I have over 850 people in my Facebook support group and 100 people in my newer support group on Google +! I started trying my hand at making support and awareness jewelry and it grew into a website (that I started and designed by myself) “Support In Jewelry”, also a matching Facebook page of the same name and a Tumblr blog that is geared only for my “Support in Jewelry” items. I donate support jewelry to silent auctions and to other groups and people who ask me and who need it for helping people in pain. I try to use the social networks to get the information out to the people and to get empathy, caring and love to those who need it, along with support. I have :YOU TUBE informational videos and more videos of me doing or performing emotional /feeling songs in American Sign Language/ASL, that have a great meaning to me and ones that I feel would give good feelings to others as well. I do all of those things so that I will NOT focus on my past history of abuse, my pain, fear, broken heart, sadness, loss of being able to do everyday things etc. I am not trying to say that I don’t feel those things or think about them, but I really do try to be as positive as possible. I try to smile instead of whincing. I try to attempt things even if I can’t finish them. I try to get out of bed every single day and focus on the “HAVE’s” instead of the “HAVE NOTS”.
I guess I’d say the main thing is, if I had to give you one thing to think about as you leave this blog today, I would leave you with this: “Try to be as positive as possible. You may not always feel it, you may not feel it most of the time; but the more you try, the more it becomes real; at least some of the time! Try to help others, play with your animal(s) and your grandkids & your children as best you can, even just sitting, talking or playing in creative ways. Try to find something you are able to do to keep your mind as sharp as possible. Find something to do that not only makes others feel good, but makes you feel good. Being kind and helpful towards others in and of itself, will make you feel more positive. Complaining is OK when you just can’t take it anymore or when you need to vent, but just remember that everyone has their own “pain” in their own worlds and lives; we all need someone to listen to us at times, so be a good listener as well. Lastly, don’t give up…if I have lost so much in life and have gone through all of the things I’ve gone through and I’m still here, trying and not giving up….not today….then you can too! Together we can make it …not alone..but together…get through today…and tomorrow if you want to give up…then think about that tomorrow ….but for today…don’t give up or give in…”
With love, pain, fear and thoughts of you in my heart…Suzanne. (PS…it’s OK to have hours and days when you are not always positive, we cannot be that way all of the time. Just make sure you get yourself back up and on the right track…and please..please try not to bring others down, try not to get calloused and insensitive to others needs…keep your heart)




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