What You See Is Not What You Get!


Having Chronic Pain is unlike the pain following a surgery or even the pain after an injury. Many things about Chronic pain are not seen with our eyes. There are so many “invisible diseases” that involve living with exhaustion, illness and pain.  Many people think they know about these issues. If they’ve not witnessed life with a chronic pain patient, then they truly cannot understand or know what we live with on a daily basis. People are misinformed and sometimes quick to judge persons living with pain day after day.  Some think we are lazy, anti-social or just rude.  We cancel appointments, shopping trips and dinner dates with our friends and family. But we are not any of the above. We are people who have hopes, dreams and inspirations; just as anyone else. The issue is that our futures don’t include many of those same things after we become chronic pain patients.  We must grieve our losses and find new hopes and dreams.  This is the price that we pay for living with chronic pain 24/7/365.

I am still “me” underneath the chronic fatigue and pain.  I still want to talk with you and hear about your day, family and dreams.  In between the days of staying in my PJ’s and lying in my bed or on the sofa, I try hard to be a part of your “normal” world.  Some days I may even look “normal” to you. In fact, most of the time, I probably appear to be “just like everybody else.  I try to wear nice pants, cute dresses and sometimes I put on make up, just like you do! If you visit my Social Media photo feeds, you’ll see someone who “looks normal”, holding onto her grandchildren’s hands, smiling and actually joyful underneath the pain somewhere.  Sometimes even sitting on the floor with them.  You may read about me “babysitting” for our grandchildren; or going out to dinner with our friends.  You may even want to “judge” me by saying to yourself “How can she be that sick or in that much pain, if she’s doing all of these things?”  If you think like that, I can’t blame you because I once thought those same misinformed thoughts.  What you don’t see, is how I get to the floor or how long I am actually down there.  You don’t see my husband helping me (and doing most of the work) to get me up and off of the floor.  You don’t actually know how long I am down there or how many pillows may be behind my back. You also don’t know that I most likely stayed home in my pajama’s all day until 4:00 pm when we had dinner plans at 5:15 pm.  You also aren’t privy to the information of how long I might’ve stayed at dinner and “if” I was able to even eat anything that night.  Not only do I have several chronic pain illnesses, but many of them are invisible to you. They are very much visible to me. I can “see” them with each new line on my face and each new grey hair that gets covered up each month. I can’t only “see” the pain, but I feel it with every part of my being. It doesn’t go away, not ever.  Though some days are better or worse than others; the chronic pain of “Invisible Disabilities” and “Invisible Illness” is apparent to me every minute of every day.  Often I fight with myself about going to sleep at night.  Do I try to go to bed at a more normal time and maybe get 4 -5 hours rest? Or do I stay up until I drop; then fall asleep quickly and wake up in just 2 or 3 hours?  If I sleep more than 2 or 3 hours, I will awaken and cry.  Whether it be inner tears or outward ones, I will cry from feeling as though someone set my body on fire due to the CRPS. I will have tears from feeling like my neck and back are broken from the Degenerative Disc disease, Spondylosis, Scoliosis and/or multiple herniated/bulging discs in both my cervical and lumbar spine; not to mention the Chiari malformation I in my neck. Yes, if I move or get up before I’m ready, I definitely will cry.  It’ a routine that we have, you know?  My husband gets up at 6:00 am every day to give me my medicine; just so that I will be able to get up with him a couple of hours after that. He is my hero.

You cannot feel Gastroparesis, but if I eat one wrong food at dinner time; I will be up all night and very sick. My husband, who is also my soul-mate and my caregiver; knows all too well about these long nights.  I have worries, though he continues to tell me that they are unfounded; that he will get tired of all of this one day. It’s not much fun to be with someone who is constantly complaining about pain, so I try to keep it to a minimum.  But even to him, my pain is not invisible.  He knows the grimace of  CRPS and the fidgeting of the intensifying pain on an outing.  He knows that when I start rocking back and forth, it’s his cue to step in and say “time to go home”.  I know that my own family gets frustrated with me because I’m not able to babysit “alone” or have kids dropped off on the spur of the moment.  I cannot commit to babysitting for the little ones under school age for a week.  I’m not able to help take the load off of my children and their spouses, so that they can go on a trip. There are many things that I cannot do but there’s so much that I still have to give.

Please don’t judge what you do not understand. If you think you know, then go and read some more about chronic illnesses and pain. Spend time with someone like me and see how impaired the activities of daily living have become.  I’m probably not always much fun to hang out with, but I’m still “me” inside.  Digging through the pain and exhaustion, there’s a real person inside, who still has a heart and feelings that can be hurt.  Feelings that are probably more fragile than most because of the judgements, stares and hurtful words that come from some people who are misjudging and misinformed.  I’ve had nasty notes put on my windshield, that would make anyone cry.  One note said this “How dare you take this HC parking space! It must be a “mental thing”! I hope you become handicapped for the rest of your life, so you know how it feels to have someone take your parking spot”! Yes, indeed; that was the note left on my car at a little market right across the street from my house.  I had my cane in the grocery cart and the little blue HC parking permit on my rear view mirror.  But I was still judged and torn to shreds because of the way I look.

Please know the difference between being able to stand for 20 minutes and being able to stand all day.  The difference between having the flu and feeling that same way for many many years! Try and understand that what I might be able to do today, I probably won’t be able to do tomorrow.  Don’t say “Oh you look happy and healthy” or tell me that I’m looking or sounding “better”.  I’m just trying to cope with the life that I have been dealt. Please don’t judge me if I try to do awareness events or fundraisers for the causes of my illnesses and those of my friends.  Though I may “do” these things; I definitely know that I will “pay” for it later.  I will rest for days in between and sometimes weeks.  But I deserve to do things and to try and be happy; even if it is in between the pain at its worst and best.  Please know that getting out and doing things doesn’t make me feel better, it actually makes me feel worse for days at a time.

Chronic pain is hard for you to understand. It wreaks havoc on the body and the mind.
It is exhausting and exasperating.  I’m doing my best to cope and live my life to the best of my ability.  I ask you to bear with me, and accept me as I am.


A Body in Chaos With Dysautonomia 


Hello Luvs,

Have you ever felt so hot; sweating so profusely and you thought you might spontaneously blow up from the inside out? That is how I feel so much of the time. If the temperature drops and I get just a little bit cold, then I am freezing cold, my lips turn blue and I am shivering. It truly does take my body quite a long time to regulate when there’s a temperature change. Sometimes when I’m at home, I’ll be just sitting and watching T.V., when suddenly,  I start to sweat and feel so very hot from the inside out! I feel honestly as though I’m going to burn up, blow up or both! It’s a crazy feeling and it makes me feel so terrible. But it’s not crazy because I have my husband come over and feel the back of my neck and he can see that I’m shiny and “clammy” looking.  He has said that he feels the heat coming from my body! Others don’t seem to understand this. No one else seems to understand the  fatigue, heart racing, inability to adjust my body temperature, the GI upset,motility issues, the inability to sleep or the pain either. But all together it is called “Dysautonomia”.  It happens to someone when their Autonomic Nervous System has gone berzerk! (**The Autonomic Nervous System or ANS is every system in the body that is involuntary. This means the G.I. tract or digestion, Respiratory -breathing, Heart Rate, Pulse, Blood Pressure, Body temperature and other involuntary brain functions as well).

In 2002, I was in a MVA and this is how most everything that is wrong with me began to happen. I started to faint quite frequently. Not only did that happen, but I had problems with all of the bodily functions mentioned above. They also found on an MRI that I have  have “Chiari Malformation I”.  This is a malformation of the brain.  It consists of a downward placement of the cerebellar tonsils through something called the foramen magnum. In plain English it means that the brain stem swells and doesn’t fit very well into the spinal column. It causes great headaches called “Chiari Migraines” in the back of the head. It feels as if I cannot hold my own head up because it is too painful. For me it causes the migraines, fatigue, muscle weakness,slow heart rhythm, Scoliosis and Central sleep apnea.  This is another issue or diagnosis that falls under Dysautonomia “Umbrella”. My Chiari was found and seen on the MRI s/p MVA. I suffered a TBI as well, following that car accident. I was in Brain Injury rehabilitation for 3 years. I saw a brain injury specialist, who is a PMR physician. He did so much and helped me quite a lot.  This Traumatic brain injury makes it impossible for me to recall from my short term memory. I had trouble finding words and still today cannot read a very long book. Articles are best for me.  When writing, as in my blog here, it is very frustrating because I have to read, re-read and read it again. I don’t remember anything unless I am told about 4 times, which is also what showed up in the multiple Neuro-psych testing that I had to do because of it.

I was in a full PT/OT and speech therapy /brain injury program.  Many days I was vomiting from the medicines they were trying to force me to take. I wanted to be a “good patient” and I tried some of them, but all of them made me sick in some way or ways.  One day I kept telling the Physical Therapist that I was not feeling well and I felt as though I might faint. Nobody would listen to me, because although I was in chronic intractable pain; which is horrible and terrible pain since the  MVA, I “looked fine”. So therefore, nobody listened and I was strapped to an exercise bike as they went on talking about their weekends. I felt worse and I called out to them, but no one came. Finally, I fainted!  Onto the floor I went, with my pained legs still attached to the bicycle. I awoke to someone taking my blood pressure. They told me to lay still for an ambulance because my BP was only 70/40 and my Heart rate was only 24.

I was taken by ambulance to a nearby hospital to get stabilized. They were very kind to me. They said that they did not have the facilities to do any kind of heart surgery or things that I may be needing, such as a Pacemaker; so I waited for a transfer to a bigger hospital. After some time went by, the ambulance with the heart monitors came for me. They took me to the big Hospital and I was admitted, observed overnight and then the Cardiologist came to talk with me in the morning. It was the morning of my birthday, my 41st birthday! They came in and told me that I had something called “Sick Sinus Syndrome”. It is a Cardiac Arrhythmia; it is called a “Brady/Tachy Arrhythmia”.  My heart rate could not decide if it wanted to go up to 190 bpm or go down to 24 bpm. It kept going like a roller coaster all night long…Up…down…Up…down. I was told that my heart even stopped several times but restarted on its own. They told me that my Heart was not working or beating properly and that I needed a pacemaker. I also had something called “Prinzmetal Angina”, which they explained was actually “Coronary spasms”. I take nitroglycerin sublingual tablets for the Prinzmetal Angina. I’ve been told that after waiting 5 minutes, and after trying the nitroglycerin tablets 3 times; if it doesn’t help the pain, then I am to go to the Emergency room. From that day on, my fainting spells went away about 80%. I still feel as though I might faint at times, and I have passed out a handful of times, but I don’t actually faint very often any longer. It is a rare occurrence now, very rare.

Within several months, the Brain Injury Rehab center, and my PMR Dr. who specializes in TBI’s or Brain injuries; got me an appointment with the very best Dr. for Dysautonomia in the USA. In fact, this Physician who is the Dept. Head of Cardiology/Vascular, Pediatric Cardiology, EPS (electrophysiology or Heart rhythm disorders) and also the Head of the University of Toledo’s Autonomic Failure Clinic,is Dr. Blair Grubb, M.D.! I was so lucky to be placed in his care. It was one of the very best things that did happen to me s/p that MVA in 2002. My first pacemaker was placed in February 2003. My next Pacemaker was placed in February 2013, exactly 10 years apart. Dr. Grubb hadn’t placed the first one because it was done quickly, here in Michigan. But when he got in there to replace it, he said that the person who’d placed it first; had done so, very deeply, right inside of the Pectoral muscle itself. He told my husband that “it looked like mincemeat” when he went in there. They hadn’t placed it in a mesh bag or anything as they usually do. Dr. Grubb already knew that I had been diagnosed with CRPS in 2007 and that it had spread from my right foot, s/p surgery, to both feet and up to the knees. Lucky for me, he’d researched RSD/CRPS and he found that sometimes if an “internal surgical wash” using  Bivupicaine, is done during surgeries that it should “head off” the spread of the RSD/CRPS from the rest of the body. Unfortunately for me it did not work out the way we’d hoped. My RSD/CRPS spread throughout my body. It went Systemic or Full Body and Disseminated. Dr. Grubb came out and told my husband that when he removed my pacemaker, my heart stopped and that I’m dependent totally on my pacemaker now.  He explained also that my Pectoral muscle had had to be rebuilt. It turned out to be a long, traumatic  surgery instead of a 45 minute Pacemaker replacement.

The turn of events that lead to the car accident, several surgeries and all of the chronic intractable pain; at least led me in the right direction and into the hands of the best Dr. ever, for the illnesses that I have been diagnosed with.  I’m so lucky to have him for all of my heart and pacemaker issues. I’m also very happy that he is the best and most well known Physician in the Country and outside of our Country for Dysautonomia and Autonomic Failure or ANS failure.  As time has gone on, all of my symptoms of Dysautonomia and also POTS (Postural Orthostatic tachycardia syndrome) have gotten worse as time has gone on. I now have been diagnosed with Chronic Kidney Disease stage II, Arnold Chiari Malformation I, Gastroparesis and more.  But these are some of the worse symptoms of the disease of Dysautonomia.  POTS, is where the Heart rate and blood pressure do opposite of what they should be doing, when you stand up after sitting down.  Sometimes you may feel faint as well with this and some people do actually faint from it.

Here let me explain it to you a little better. You see,as I did above, I can tell you how I feel. You won’t be able to grasp it if it has not happened to you. It is not a “hot flash”, like those during Menopause. It is a feeling of literally being so very close to a fire that you can really feel the deep heat from it. Sometimes this feeling will  last’s hours and even after I’ve taken a shower it happens and then I need another. Some of this “heat” and feeling of “being on fire from within” is also the Systemic or Full Body CRPS (Complex Regional Pain Syndrome) along side of the Dysautonomia/POTS etc. Let me explain a little bit better from several of the Dysautonomia websites full of  information. I will post the locations of the websites at the end of my post, so you will have them too. But before the next paragraph, before I get to the more technical stuff; just let me tell you in my own words, what I feel and what I do know. I think it helps me sometimes to relate to someone or something, when they are being “real” and telling their story.  I told you some of my  “story” in the first paragraph or two. But there is so much more information for you to learn and understand about this “invisible illness”.  Dysautonomia is like at “Umbrella” as it has many different symptoms and illnesses that it “covers”.  For example, many persons with this illness, also have CRPS or Complex Regional Pain Syndrome. I am one of those people; and I live with Systemic, Full body CRPS following my 7th surgery s/p the MVA. That foot surgery was in April of 2007 and I was Diagnosed with CRPS at my post-op check up. I couldn’t believe it and didn’t want to and so I got a 2nd opinion from an Orthopedic foot/ankle specialist. The first thing that he said when he saw my foot was “definitely CRPS here is a consultation to a pain clinic”.  I also have Gastroparesis now, which is the almost like a “paralysis” of the digestive system to varying degrees. I feel full very quickly, nauseous, bloated and I feel a burning in my lower abdomen. Another issue that goes along with this is “POTS” or Postural Orthostatic Tachycardia Syndrome. You guessed it, I have this one also. They all go together like a puzzle and they fit like together because they are all under this “umbrella” of Dysautonomia.

POTS causes feelings of being light headed, fainting, fast heart beat or tachycardia, chest pains, shortness of breath, GI problems/issues, inability to exercise, and sensitivity to heat and cold as I mentioned above as in Dysautonomia. While POTS usually shows up in women who look fine and healthy on the outside, *researchers  say that POTS and the issues that come with it are comparable to the disabling complications of COPD and CHF!!*(from Dysautonomia International)

*Over 70 million people worldwide are living with various forms of “Dysautonomia”, which can cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “involuntary or automatic” functions of the body that we do not think about or do consciously.  This is things like our: heart rate, blood pressure, digestion,  and temperature control. People living with various forms of Dysautonomia have trouble regulating their body temperature, body systems etc., which can make them feel lightheaded.  Sometimes things occur such as fainting, too high or too low blood pressure, abnormal heart rates (such as bradycardia, tachycardia or both, like I had), malnutrition, and in very severe cases even death can happen.

Please try and remember this or these things when you see someone who appears to look fine or “normal” on the outside.  If they take a Handicapped parking spot, they need it and their Dr’s told them so! People don’t have the HC placards for fun. Please don’t be mean or rude. Don’t say something sarcastic or unkind.  Id rather that you just ask me if you have a question about my disability status. I’m not required to answer you, but I will because I want people to know. You just never know what is going on inside of someone’s body. I hope this bit of information has helped you to understand POTS and Dysautonomia a little bit better than before. In honor of this 2016 “Invisible Illness week”, I hope that this post taught someone out there something about how this/these illnesses can affect someone’s life. If you have a friend or family member with these illnesses, please give them the benefit of the doubt, when they are not feeling well. If they’re exhausted for what you think is “no good reason”, if they’re tired because they were up several nights in a row, due to their pain, or illnesses; please don’t judge. The worst thing that you can say is “well you were up til wee hours of the morning, so it’s no wonder that you’re tired”.  We cannot sleep like you “non ill” persons can sleep.  Just please be kind if we are not always at our best and/or if we have to cancel an outing with you.

Some of this information was taken from the “*Dysautonomia International” website and more was from “*Healthline”. But most of this was my own words, feelings and from my own personal experiences that have happened and that are still happening to me every day. (The information from these sources has * near it).  Thank you for visiting today. Please come back next time, which will be soon. The next post is going to be something positive and something about CRPS Awareness month, “November”. It’s also called “Nervember” by IPain and “Knowvember” by U.S. Pain Foundation.

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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)