Someone help this woman! This is a crime! They treat animals better than people so what’s wrong with this picture? This must stop! People are committing suicide because they’re being denied pain medications! Please watch this short video and it will open your eyes to the TRUE OPIOID crises going on in the United Stated of America! Someone please help this woman and the other 100 million chronic pain patients who are in agony now bcz of what’s being misunderstood as addiction, hyperalgesia and worse! This lack of opioid pain medication to true legitimate chronic pain patients, has to stop! We are not disposables! We are in agony and we are human beings with rights like every living soul! Please learn about the difference between dependence and addiction! Addiction is a non-stop ruminating, craving and a need to get high from taking some kind of medication or drug! People with Chronic pain get “addicted” 1% of the time, due to pain medication! We are “dependent” NOT addicted! Our bodies will go through a physical withdrawal when the meds are taken away! But we do not WANT to need the pain medications. We do NOT get high or euphoric from the opioids! We get to live some semblance of a life outside of a hospital or a bed in our homes! Please help because too many people have died already! Stop being hysterical and blaming real and legitimate pain patients because someone you know died from an overdose! I’m so sorry for you, but don’t punish everyone because you’re in misery! Find compassion in your heart and watch this woman’s story for about 3-4 minutes! Thank you!
Untreated or under treated Chronic pain can kill! There are many articles that discuss this topic but I’m writing from the chronic pain patients perspective. Most things that are written are authored by Dr’s and others in the medical profession. But for me and for us this is real! Sudden cardiac death is a frightening topic to discuss. This is true especially because many chronic pain patients live with the risk factors that are written about in the articles and medical journals etc. Personally, I have a pacemaker for not only Dysautonomia & POTS, but for an Arrythmia called “Sick Sinus Syndrome”! Additionally, I. live with Atrial fibrillation, MVP & TVP (mitral valve & tricuspid valve prolapse), CAD (coronary artery disease) & long QT syndrome! In 2005, I had a heart attack and in 2006, a CVA or stroke. Enough about me, but I’m trying to paint the picture that I am not alone in this. Many chronic pain patients have several comorbidity’s. If the CDC continues with this crazy “war on opioids”; taking our pain medications down to dangerously low & restricted levels, people will die! I may die as well, and I’m not being dramatic!
So many people, including our clueless government representatives do not realize that severe untreated chronic pain can lead to death. They think it is just an innocuous “pain in the behind” for those that live with it. It doesn’t interfere with their lives or the lives of the CDC, FDA and several others such as, Big Pharma and the many physician run drug treatment centers in the USA. But when suddenly, chronic pain “hits” one of their family members, then they start advocating more. But why do they have to wait until it happens to their family members or even themselves? Why can’t they listen to our cries of suffering now, before more of my friends die suddenly from the agony of living with the daily unrelenting chronic pain without any reprieve? Does the government or the general public even realize that Veterinarians get about five times more education hours than medical students get for human beings living with chronic pain? I read that there was a study done in 2011, and the Journal of Pain found that the United States medical programs only allot approximately 5 hours of teaching time on the management of chronic pain. Our Canadian neighbors give their medical students a whopping 19 1/2 hours! This is where the medical professionals who educate the incoming physicians are at fault for their part in this “crisis” as it has been called.
Just this past week, the pain community, including the support groups that I administrate online, lost another chronic pain warrior. I lost my 7th friend in just over 2 years! This is the 3rd friend that I have lost to chronic pain and patients diminished access to pain medications. In my experience, it continues to be the same story; in that the chronic pain patient tells their significant other or family members that they are feeling worse. They go to bed to try and relieve their pain and they never awaken. My friends husband found her slumped over in her chair, late at night when he checked on her. It’s not unusual for most pain patients to stay up very late watching T.V. or “playing” online to keep our minds off of the pain for awhile. When the coroners do an autopsy on a person who has died suddenly, and they find “drugs” in the bodily fluids; they blame the opioids. These are educated people, toxicologists an forensic medicine physicians. They seem to just blindly blame these deaths on the opioids instead of seeing the possibilities that exist. It could have been death from pain that was unrelenting and untreated and/or misdiagnosed and under treated. Maybe more of my friends died from the sudden drop in their pain medications?
What is it going to take to get the government to listen to our pleas? I’ve written and sent the same letter to the White House twice and have gotten no response. I’ve made videos on YouTube to explain this crisis in Chronic pain community. I was hoping for at least one of them to go viral. But instead, the viral videos are about usually someone falling off of a chair or a baby biting his brothers finger! How do we get them to listen to us? I agree with the fact that Opioids should not be the first option for people with chronic pain. I also agree with the research that’s being done on medications that cannot be crushed or melted to become more potent for those that do abuse them. But for those patients who have been on a “normal amount” and steady dosage of Opioids for a long period of time; why not leave them to the physician(s) that know them? Let the Doctors who’ve treated them for many years, take care of their patients without fear of Federal agents breaking into their clinic during hours and scaring everyone half to death! If someone has been taking opioids for a long time and the dosage remains the same and it’s working for them, can we not leave them alone? Let them live some semblance of a life outside of their bedroom or recliner. When I say “them”, I mean “us” and we are dependent but not addicted to these medications. These are not “powerful, strong meds that loop us out of our minds” as I’ve heard on several occasions. These are the medications that we need, in order to have a small amount of active time during the days. We aren’t asking for more and we agree to the submissiveness and feeling of personal character attacks with urine drug screening. We sign the contract with our pain management physicians. So why not just let us live our lives and stop attacking us and calling people who live with chronic pain, “drug addicts”.
Anyone who calls people living with daily struggles of unrelenting pain, “addicted”; needs to learn more and be educated about opioid use with chronic pain patients who have several high pain illnesses. Not only do they need to learn more, but they need to be empathetic and try to put themselves in the pain patients place for a moment or two. People, especially those in positions of power; need to think about what their lives would be like if they could barely get out of bed in the mornings. What if they couldn’t go to their fancy dinners or dances, due to chronic pain and and unrelenting fatigue? I’d say they wouldn’t like it very much and neither do we! How do we get these officials to learn the difference between the words “addiction” and “dependence” before more of my friends die from under treated pain or lack of any treatment?
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.
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.
Being a Health advocate/activist” for people like myself, who live with chronic pain; is becoming more of a challenge. I’m feeling both proactive and protective. I want to help change the way society and the government thinks about chronic pain and the persons living with the daily struggles from it. I also want to help put a more positive spin on something that is very difficult to stay positive about. While Governor Chris Christie is becoming the “drug Czar”; he is talking about changing many lives in a negative way. Our President is putting persons in charge of what he has only heard of as “the Opioid Epidemic”. He listens to what others tell him and he reads about statistics or numbers of deaths; not the number of “people who have died”. Those are people who have passed away not numbers on a screen. These people each have or had their own story to tell and nobody was listening. I’m trying to get someone to listen to us. As a chronic pain patient myself, I can say that we feel like the rules of the “game” are being changed, without talking to any of the real players. When you only are only told one side of a story over and over again; you are not going to get the whole truth or the entire story. When the President or the Governor talks with people who have lost someone that they love due to a “drug overdose”; then that is the way the story is going to spin. There are journalists who have lost someone they love, to a drug overdose and they are writing over and over again about the “horrors of the Opioid epidemic”. There are reporters who are speaking against Opioids on the Television and producers making short films about “The Oxycontin Express”. I can only say that if I was misinformed and heartbroken, that I might do the same thing. But I’m not misinformed and I honestly feel that if I lost someone to an overdose, I would still try not to hurt anyone else while I was in mourning. I wouldn’t try to “punish the whole class for the behavior of one”. I would not want to go on a mission to try and “save everyone else” (while hurting so many and possibly not even knowing) to make myself feel better.
I turned on the TV the other night and one of the news stations had a week long special about “the Opioid Epidemic”. I was yelling at the screen and telling them that they hadn’t a clue! The person they had on as a guest, was someone who had broken his leg, had surgery and had become an Opioid addict! That is not the same thing as someone living with daily chronic pain and knowing that life will always be this way. Persons like me who live with chronic pain day in and day out, do need to try physical therapy, and other first choice treatments available. We realize that we need to give different options a chance. But when a patient with several high pain illnesses has tried many alternatives; and is not a candidate for other options; then they/we need reassurance. We need to know that the medications that many of us have taken for several years and that give some semblance of a life; are going to remain available and nobody will rip the rug out from under us!
I am in a group of people called “chronic pain patients”. We are not drug addicts! The definition of an addict, according to the Dictionary (on Definitions.com) is this: “to devote or surrender oneself to something habitually or obsessively”. I can speak for myself and the hundreds of chronic pain support group members that I mentor. We take only the medications prescribed to us by our physicians and/or Pain Management Physicians. To clarify, I will explain further the difference between the addict and the pain patient. The majority of chronic pain patients take their prescription pain medications (or Opioids) responsibly. The medications for pain are taken per the instructions of a legitimate pain management physician or well known doctor. Long time pain patients continue on a steady dose of pain medications and do not crave more than that. In fact, the truth is that just about all chronic pain patients, myself included, don’t want to be on the medications that we are taking. On the other hand, an addict has thoughts about their medications/drugs constantly and overwhelmingly. They can’t function because they’re thinking about their next dose all day long.
I read an article awhile back called “The Word is Credibility-Not Stigma-in the Prescription Opioid/Heroin Epidemic”; that really hit a nerve with me. It upset me because the writer puts down the responsible chronic pain patients and “lumps” us together in the same category as heroin addicts. She wrote about the deaths of people who have overdosed. But how many of those deaths were people who took only their prescribed dosage of pain medications? I read another article in which the writer (*Denise Molohon, a guest columnist for PNN January-2016)) stated that “the CDC even admits to giving out skewed data”. The CDC has qualifiers for their “Morbidity and Mortality weekly report. She researched the information that she was given and found that those qualifiers are as follows:
- “approximately 1/5 of drug overdose deaths lack information on the specific drugs involved. Some of these deaths might involve opioids.”
- “Heroin deaths might be misclassified as morphine because morphine and heroin are metabolized similarly, which might result in an underreporting of heroin overdose deaths”
The writer also stated that “if heroin deaths are being misclassified as morphine, which results in the “underreporting” of heroin overdose deaths, then wouldn’t the opposite also be true? That there is “over-reporting” of morphine deaths, which are then misclassified as prescription Opioid deaths?” Also, when we are reading or hearing reports about fentanyl overdose deaths; most of those deaths are from street drugs fentanyl and not the prescription pain medication. We just can’t lump medications and street drugs together, that is irresponsible. Only “5% of people who are prescribed Opioid pain medications, go on to become addicted”, according to our own National Pain Report in November 2015. As a legitimate chronic pain patient, I can verify that we only take pain medications to be relieved of horrible daily chronic pain, nerve pain and the pain from such illnesses as CRPS plus many others. We don’t become “addicted” to our prescription pain medications. Our bodies may become tolerant or “dependent”, but we are not addicts.
There are support systems such as the U.S. Pain Foundation and RSDSA who encourage the chronic pain patients to not be hopeless. They empower us and encourage us to do whatever we can do but never more than that. We have a voice and it needs to be heard. Anyone who hasn’t experienced chronic pain first hand or even as a caregiver, hasn’t any idea what it’s like to be in horrible pain 24/7/365. When you are finally given something to alleviate that pain somewhat (but never 100%), it is a relief. But then because of the people or groups who are working very hard to take our pain medications away, we become fearful each month that goes by. We fear that one method that helps us to get out of bed each morning without writhing in pain, crying and screaming out in horrible nerve pain; could be taken away at any moment.
I feel that people who are doing this are doing it for the wrong reasons. People need to be educated regarding Opioids instead of being afraid of them. There are some chronic pain patients who are not candidates for other types of pain control, such as the pain pump or the spinal cord stimulater (SCS). Taking a medication away that helps so many pain patients to just put their feet on the ground in the morning, seems cruel. Hurting someone because you have felt “wronged”, is just terrible. There needs to be some kind of shelter from the world of intolerance.
Here are some ideas for mostly helping with CRPS-Complex Regional Pain Syndrome. I’m sure you could use this advice for any chronic pain illness. The ideas are those from Dr. Pradeep Chopra, MD. A friend of mine went to a seminar that was hosted by RSDSA (Reflex Sympathetic Dystrophy Association),where he spoke. She gave me this info and I put it into list form for you to have and keep. I hope these help some of you! (from Chantal Granger):
1. Have all blood work from all your doctors at once
2. Have them numb spot for IV before they do it
3. Take pictures of both limbs to take to doc during flare ups
4. Make a took kit for when you have flares it comforts you like scent word search books special blanket, Pictures etc
5. Lower nerve blocks are useless if the first few don’t work and it’s not at the start of CRPS
6. Magnesium is very important
7. Pills don’t work as well as rubs oils or salt water made with magnesium salt.
8. Always be honest with doctors. Bring all meds to appt and try to have them all work together or exchange info. Bring list for treatment plans and anything new to all doctors
9. SCS (Spinal Cord Stimulator) will not help pain as much a few years after. No real way to see if the test is right the wires can move while scare tissue moves or when implanted
10. Ketamine- make sure they keep you awake so you can tell them when it’s working so you get lowest dose you need. They should start at 100 and go up too 500. 100 an hour.
11. Don’t see a doc you don’t feel comfortable with or one that has No clue what CRPS is. Ask for referral to one that does.
12. Never say yes to a test or treatment you don’t know about or feel comfortable.
13. Bring as much medical information about your case as possible, if you go to ER
14. Building up brain cells and body nerves with different vitamins will help a lot.
15. Exercise if you can’t physically if you look at something and imagine your hand reaching for it and imagine picking it up and work at hard at it your brain will start to believe it and that will make that part of your brain stronger.
One day during the Summer of 2002, the sun was shining and my husband and I were walking hand in hand, sipping lemonade at an outdoor Art Fair. We were enjoying the warm air and each other’s company as we walked hand in hand. Afterwards, we’d decided to go into town for dinner because our two teenage daughters were busy with friends for the day.
We were driving on our way to dinner when suddenly, I heard my husband shout out “OH NO!” I looked and saw a car coming straight at us. Instinctively, I pulled my legs up to my chin into the fetal position and screamed. What happened afterwards is a blur, but I do remember hearing a very loud noise upon impact and then the smell of smoke. Next, there was only a dead silence. I remember wondering if we were dead for about a nano second. Suddenly everything went dark and silent. That’s all I remember about that day, except short little pictures in my mind of the ambulance ride, hospital & ER..
Once I was admitted to the hospital, I do recall being very upset because I could not walk. No one would come to help me when I tried to call for the nurses. It was hard to use the “nurse call” button because my rotator cuffs were torn in both shoulders. Both of my knees had torn Meniscus’ and I had a ruptured Biceps tendon. There were just too many injuries and then the multiple surgeries that followed for many years. I have Degenerative Disc Disease and suffered multiple herniated and bulging discs at C4/5/6 and L4-5/S-1 with Radiculopathy. I had an MRI which showed that I was most likely born with Arnold Chiari Malformation I. It must have been “sleeping” all of those years, the Dr.’s told me. They explained that between the severe whiplash from that MVA & a whiplash that I suffered from a previous car accident; my Chiari had been awakened. I could not hold my head up at all. The pain was horrible and intense. My husband says that when they were doing my X-rays back in the ER; I was screaming because it was so painful. He said that I was crying out so loudly, that people standing in the hallway left; because they could not handle listening to the painful screams. I mostly remember my back and neck hurting so badly that I could think of nothing else.
My husband also told me that he kept trying to tell the Dr.’s that “something was not right” about me. He thought that I was acting very different from my “normal” personality. He said that when he told them I was acting “not myself”, they sent up a Psych consult. Then they told him that “I couldn’t handle the pain because of the abuse I suffered growing up and in my past marriage”. He didn’t know what to say although he knew that could not be true because I hadn’t been “different” just before the accident? After only 5 days in the hospital, and after their lack of being proactive to help me with my pain and injuries; my husband signed me out against medical advice. He took me to the Neurologist who had known me for 3 years at that point.
The Neurologist really got the “ball rolling” and had me tested for anything and everything that could have been wrong. At that point I was in a wheelchair, could not hold my head up and needed a yardstick behind my head/neck with a pillow on it. My husband rigged up a way to help me have something to rest my head upon. I could not dress myself, go to the bathroom alone or even cut my own food.
We finally found out what was truly wrong. Our questions were answered when I was diagnosed with a TBI or “Traumatic Brain Injury”. I went through 6 months of intense PT, OT and speech therapy. After that, I was in Physical therapy for 8 more years and brain injury rehabilitation for 3 full years. The brain injury rehabilitation was done after I’d done poorly on the Neuro-psych testing. Over the next 3 years, I was in a brain injury rehabilitation program. I was there Mondays through Fridays from 9:00 am until 3:00 pm. I had to have a driving company take me to and from the rehab center daily because I was unable to drive due to pain and nerve injuries.
I could not comprehend what I was reading and had a hard time finding the right words to use while speaking. I was more than forgetful and couldn’t remember my phone number, social security number or my own address. The tests showed that my short term memory was terribly low. I went to speech therapy, Physical and occupational therapy and had to re-learn how to drive via Drivers Rehab training. I did pass in the end, but can only drive a few miles for personal errands. They told me they were afraid that I might get someplace and not be able to find my car in the parking lot. Also, the nerve injuries in my legs, knees, lower back and neck; make driving terribly difficult and fatiguing.
It was and is very frustrating to go from graduating with honors and having a “photographic memory” to not be able to read a full book any longer. I had read the first 4 “Harry Potter” books and was in the middle of the 5th book, when the accident happened. I still cannot and have not been able to finish the rest of the books in that series. Whenever I’ve tried to read any books since that time; I end up reading, reading again and then re-reading. Every time I put the book down and then try to return to pick up where I had left off; I cannot remember most of what happened before that point. I’ve tried audio books and it is just the same. I try to listen and whenever I stop and try to go back to it; I’ve forgotten the whole beginning again. This brain injury has changed my life because I have issues with: double vision, severe dry eye, incomplete blinks, prisms in my glasses and continued worsening lowered vision. I have a moderate hearing loss and have 2 hearing aids now; when ironically, I was an Interpreter for the Deaf before that car accident. I worked at a major University hospital, Interpreting for Deaf patients and also at a school for the Deaf with Deaf children. My life was and is changed forever because someone was distracted and then ran through a red light. My husband’s life and the lives of my daughters were also changed forever in the blink of an eye. I had been a very involved mother who cooked, cleaned, did laundry and drove a mini van full of teenagers. I still made sure that I went in my wheelchair to every swim meet and dance competition. I didn’t want them to think my love or support for them had changed in any way.
I wanted to mention that I still have bad migraines, usually they are “Chiari” migraines. I have balance issues and my personality changed in that I get very emotional now, when I wasn’t like that before the TBI. I also have a hard time making decisions; along with having the same issues that I’ve had since the MVA. If you have had a closed head injury, a TBI or an MTBI, please contact Brain Injury Association for information.