Through my Eyes

Every morning as I open my eyes to greet the day I smile gently, as I have since early childhood. For a fleeting moment I am happy, full of the appreciative anticipation and excitement of another day. Then I move, an arm, a leg, perhaps just my fingers or neck; and the reality of the pain throughout my body hits me like a lightning bolt followed by a boulder.

Reality hits. Once again I realize that I will not be bounding out of bed to start my day, follow my dreams, work hard at the career that I used to be so passionate about. I will not get to drive to the office anticipating the projects of the day. I will not get to greet my coworkers and discuss the day ahead over coffee and chatter and jokes and laughter. I will not get to stretch my mind, solve the puzzles and challenges of the day, make mistakes or produce that which wows. I will not be driving home from a rewarding (or sometimes frustrating) day of work excited to throw off my work clothes in exchange for my jogging gear so I can run 3 miles and end up at the park on the swing set, before heading home to make dinner and collapse on the couch after a challenging and rewarding day of life! I will not feel the sense of completeness and belonging in the world at the end of the day. I will not be able to tell my friend or family member about the exciting project I am working on when they call to say hi. I will not get the hard earned paycheck at the end of the week that allows me not only to pay for my basic needs, but to plan for the future, plan for a vacation to an exotic place I would like to visit, plan for a good retirement one day. I will not be making plans for the weekend with my friends to go see the concert, or go out to the club or restaurant, because not only can I not afford to go on my overly extended tiny budget, but I can not keep up physically. I will no longer be making plans. I cannot dream of vacations or a comfortable retirement because I only have $5. dollars left at the end of every month after paying for the basics of life and the mounting medical bills. I cannot dream of the pretty dress in the window because I cannot afford to go anywhere anymore that allows me to wear that pretty dress. I no longer have the privilege of what most people take for granted. I no longer have the privilege of a “normal” life.

I wake up and gently smile at the new day. Then I move my arm, my leg, perhaps only my fingers or neck; and I once again (as happens every morning) I am reminded that I am Sisyphus, and the day demands that I once again I have to garner every ounce of physical and emotional strength to force myself out of bed, for the boulder awaits, and I have to push it up the mountain again if I am to get through another day. I have to push the boulder up the mountain with the full knowledge that tomorrow morning it will be waiting bedside, to be pushed up the mountain again. Every day is the same. I have become Sisyphus, life is the boulder. A boulder that is so heavy and painful that if I didn’t have pets waiting bedside with sweet, gentle eyes waiting to be fed by me, I would choose to ignore many days, I would simply roll over and cancel the day. But I cannot. My life is like an ever – repeating day … think the movie Ground Hog Day … an endless loop of maintenance of the basics of existence through the fog and frustration of relentless never-ending physical PAIN.

I have become Sisyphus. I am only 53 years old and I have been Sisyphus for 23 years now. I am so tired of being Sisyphus …

To those of you out there who think those of us who have life-long chronic diseases (that rob of our lives) somehow “choose” to live the life we are forced into by the limitations of our bodies (and everything that entails) … you need to re-examine the issue. Stop and ask yourself … would you give up everything you worked for and loved to live a tiny life on poverty level funds? I am sure your answer is no. By accusing me of choosing this life (with chronic pain) you are in essence saying that you think I am crazy and have somehow embraced my limited life style by choice? NO … I haven’t! I too had a life that I LOVED! I grieve for that life every day! I didn’t choose this disease … it chose me … it raped me … it took over my life in the most insidious fashion. I try to control it, I try to live with it, I put a smile on my face most days and try like hell to appear as normal as possible. I want to be seen as normal, I want nothing more than normal. I try every therapy, I research ad nauseum. I have tried every coping mechanism, medicine, alternative therapy, healing diet, etc., for 23 years. I exercise every day, I do everything I am supposed to do to control the disease. I work very hard to tame the beast. Buy please do not confuse my coping with with “choice”. I DID NOT CHOOSE THIS! I am just like you. The difference is that my body failed me at age 30. I was 30, so happy, moving forward full of big hopes, big dreams, big plans! The life I live today has nothing to do with any of those hopes, dreams, or plans. Just be grateful for your health, and grateful that you have not been handed “the boulder”. You have your freedom in your health … and I would give anything to have that back!

No Treatment? Only Aimless Therapy.

There’s only one thing worse than understanding, and that is not understanding. Innocence is bliss, as the proverbial say, but that is not always true. Treatment is the curer of disease, of sickness, of impairment; to treat, to deal with in a certain way, you go to the GP, you get treatment, the hospital, treatment, the clinic, treatment, but what if you can’t be treated?

‘Therapy is treatment’, the professionals preach, but not clinically. When you have appendicitis you go see a general surgeon, he grips a 10 blade and a cauteriser, and removes the appendix. Treated. When you get diagnosed with a treatable cancer, you see an oncologist, he prescribes a course of chemotherapy, you take it. Treated. Clinical. Clean cut. You either are, or you’re not (though, whether your doctor actually spells it out to you like that is a different story). Therapy is dissimilar. They say therapy is synonymous with treatment, but it isn’t applied in that fashion. Therapy is given when there is no clinical treatment, when the reach of medicine stops. After you’ve had a knee replacement you got to rehabilitation: therapy. Though this therapy has clear intentions and outlines, this therapy is aided by the strong guide of medicine. Therapy restores. Medicine diagnoses and medicine treats. Therapy needs to be worked at.

But what is there to be worked at when there is no explanation?

There’s only one thing scarier than knowing you’re in the hands of medicine, and that is knowing that medicine cannot reach where you are. You are as far in as you will ever be out. Scan after scan, exam after exam, nothing. When medicine has nothing, where can you go? The doctors send you to a therapist (of whatever sort) and they give it a stab, but they’re not medicine. They don’t have the reach, the expertise; all they have is therapy.

You sit in that waiting room seat for the however-many times this month, and you question why you’re here. You know you will be greeted by a baffled and flailing therapist, who is attempting to ‘treat the symptoms’, you know you will go home in just as much pain as you came. They can give you as many exercises and activities as they want, but it never helps, it all never helps. As you walk out, you, again, question why you’re here, and it dawns on you, that you’re here because you have no where else to go. You’re stuck in a downwards spiral of medical rejection and therapeutic endeavours.

Medicine bounces you all over the hospital, but you always end up in the same bleak waiting room, despondently walking in with the same therapist, greeted by the same slosh pipes and rainbow coloured putty. You have no where else, you rock up and sit in the same chair every time, and you hope and pray that they will finally find the reason, the reason for all of your suffering, and pain, and hardship. And every time, after you leave that sombre place, you’re disappointed, you wished that you would finally understand, and that you could finally get back to family and friends, to school, to life. You wish that this isn’t going to ruin your life, that it isn’t going to ruin your career, that it isn’t going to kill you – mentally and physically.

There’s only thing more disheartening than not having hope, and that is getting your hope thrown back in your face.

Dystonia and Parkinson’s

Hi my name is Diane I was diagnosed with Parkinson’s in 2012 iv just about had it with doctors that look right through me and don’t listen when you are trying to explain your problems I started getting dystonia in beginning December 2012 about 6 months after being diagnosed with Parkinson’s I spoke to my neurologist who also doesn’t pay much attention just said you wouldn’t jet better well I know that my arm kept twisting around till it felt like it was coming out of the socket this carried on and my toes roll under and my hand would twist and freeze in June 2014 I had a very server dystonia in my arm that continued for 2 hours I feel so strange well my young son phoned for an ambulance when they arrive they had know idea what to do with me as I seem to have pain ever were they decided to take me to AE I stood up to walk to the door when I had this unbearable pain go through my body that my legs went from under me when arriving to hospital the pain was so bad I just wanted to die I know that sounds terrible but even a nurse who had worked in AE for some years said she had never seen someone in so much pain they only part of my body on the bed was the top of my head and the tips of my toes my back was so arch up they did know how to stop the pain as they had given me everything they could I didn’t work so kings college was informed who told them to give me high dose of diesapan which with all the other drugs I’d had knock me out but since being discharged from hospital I’m still in pain every day since kings changed my parkinson’s meds which has helped but had bad attack of dystonia again to day and save me being stuck in hospital got my Gp to give me higher dose of morphine and up the diesapan which has helped but still got pain does anyone know how I get a proper diagnosis for dystonia sorry for going on but i had know one to talk to, thank you. Diane k

Epidural Nightmare

I went yesterday to surgery center to have Lumbosacral Interve/ Bilaterral Transforaminal Epidural. The pain I experience during this procedure was so intense my scalp and face felt like they were on fire. My legs moved on their own, I had pain in my groin, my feet felt like they were in ice water. I told the Doctor that the numbing hadn’t work. The pain from the injections was the worst pain I have ever experience. I had this procedure before with another doctor and didn’t experience any pain. I sense something was wrong and advised doctor of what I was experiencing he continued on stating their was nothing for me to be concerned about.

I wanted to jump off the table, but didn’t fearing he hurt me more and that I could end up paralyzed. The pillow my head was on was drenched. I chose to have a local with no IV sedative as I had with former procedure. I was so traumatized by what occurred during the procedure I was shaking. Requested a sedative the doctor replied we give pills here and walk out the OR. The nurse took me to the recovery area. 20 minutes later this very unfriendly nurse gave me my clothes, I dressed myself while sitting on the gurney. When I step down I realized I had no feeling on left side. Two nurses had to assist me to a recliner. Their was a very kind male nurse that I had a conversation with earlier. He reassured me that this sometimes can occurred and that they had alerted the doctor. When he showed up to see the patient in the bed across from me was crying out in pain. I tried 3 times to walk and couldn’t.

When he finally came over to check me he was more than aloof and in a very cold tone said to wait another 20 minutes. I lost track of time finally with assistance I was able to walk to transport van that took me home. Today when I went to get up to go to bathroom I had a problem getting their as my left leg is numb and balance is bad. I have the worst head ach ever, pain behind my eyes that are blood red, I look like I have a bad sunburn and feel nauseous, I have pain inner left thigh I have never had before. I called the surgery center to report this, Dr. Frankenstein left a very cold message hours later on my cell. I called my doctor who referred me and alerted his nurse. He never returned my call. I should have listen to my gut feeling and cancelled. I actually did earlier. That’s another story. I’ve been on line all day. Had I read some of the comments that I read today from other patients who have experience horrific side effects. I would have run the other way. I am scared . I am attempting to think positive, but its difficult.

I AM IN PAIN!!

I would like to start by saying that I cried when I read “Letter to People without Chronic Pain“. I was diagnosed with 3 herniated discs in my neck, multiple bone spurs and degenerative bone disease. I had been working for years with neck damage and had no idea! Neck pain had become a part of my life and considering that I was in my mid to late 30’s I knew I was no longer a spring chicken. So until the morning of August 17, 2012 I thought that I was healthy as a horse.

August 17, 2012 at 5:00am started out like any other day. I got up started my coffee and proceeded to take a shower and get ready for work. By the time I got out of the shower the pain was so severe that I laid down on the couch and to my absolute fear I could not move! I also was having trouble breathing mainly because every time I tried to take a breath it felt like a vise was around my ribs and chest! I could not breath, I had no idea what was wrong with me.

When my doctor came into the room after I had an MRI, my jaw dropped as did my doctor to be honest. She stood there with one hand on her hip and told me that I have 3 herniated discs, multiple bone spurs and degenerative bone disease. I thought ” how in the world does this happen to some one who has never even been in ANY kind of accident! Her only explanation was the degenerative bone disease mixed with the type of physical labor work that I have always done ( and some weight lifting in the past ) had created this problem.

I went to a specialist was told surgery was not an option because no doctor where we live would touch me because of where the discs are and how they are herniated. So I went through physical therapy and home traction, which did help for a little while. After my case went from a short term to a long term disability case my employer with the state terminated my position and I lost my insurance. When that occurred I was no longer able to go to the doctor as needed and I lost my long term disabililty and my disability advocates. I have since tried to go back to work, but I am unable to do the same type of physical labor work that I used to do. Since trying to work I have noticed new symptoms. Some times I think that my husband thinks that I am full of it, and some times even rolls his eyes when I mention pain. But he has NO idea how bad my pain is! It is not just Physical pain but now has become Emotional pain as well.

Until this happened to me I worked took care of my kids, and now I can not hold a job! People look at me like I am full of it, like I am trying to ride the system! That could not be further from the truth! I want my life back, I do not want to be in pain literally 24/7! I want to sleep at night, ALL NIGHT and not wake up 4 times a night because an arm or a leg has gone numb or because I had my head in a wrong position for to long and a sharp pain wakes me up!! I am trying to get some financial assistance as a hospital near where I live but it is taking forever. I am even trying to get help from state and they are questioning why I have quit 2 jobs. I do not have an advocate or medical prof anymore of my condition because I have lost it all. All I do when I am by my self is cry, I want the pain to end, I want to stop feeling like people are judging me and talking about me like I am this drain on society! I do not know how much more I can take! Even my concentration is suffering, I feel like I am going CRAZY, I WANNA DISAPPEAR!!!!!

Neck, back, shoulder pain

I also suffer from chronic pain from a car accident. I had chronic low back pain before the accident with a surgery for a larger herniated disc. At that time I had a large one, a small one and a 3rd one going. I have suffered back pain since I’ve been 21 (got hurt at work) and am now almost 54.

In 2012 I was involved in a car accident that wasn’t my fault. I t-boned their car because they came very fast through a divided hwy.

At first the Dr.’s thought I had whiplash. After many physical therapy sessions with no good results, I was finally able to get a MRI of my neck. I had 3 herniated disc’s and spinal stenosis.

The pain in my neck and arms was unbearable. Again, back to PT for my neck. After a year and a half of that, I was finally sent to a neurosurgeon. He wanted me to have the epidural injections. At this point I was willing to try anything to reduce this pain and avoid surgery. I had two bilateral injections and the last one I had the Anesthesiologist hit a nerve, twice. I thought I was going to die! I was still working at this point, but I knew that my employment was not going to last. I just couldn’t work with the amount of pain I was in. The injections did not work at all. The neurosurgeon suggested pain management. My Dr. was already prescribing me pain pills and I was not about to go that route. I ended up seeing a different neurosurgeon and he suggested a 3 level cervical fusion. After careful consideration, I decided to go ahead with it. After a follow up with the surgeon I told him I still had arm pain and shoulder pain in my right shoulder. I couldn’t even hold a cup of coffee at this point. Off to see my primary care Dr. She examined me and thought I had rotator cuff issue. More PT, another MRI and sure enough, I had a full thickness rotator cuff tear. Off to yet another new Dr. for a orthopedic opinion.

Needless to say, I had yet another surgery. The second major surgery in a span of 8 months time. More PT after surgery and now I have a bit of frozen shoulder. I am scheduled for a injection in Jan. Great way to start off another year in chronic pain. I have tried not to take a lot of pain pills because I don’t want to live on those, but living in this kind of pain isn’t working for me either. It’s a double edged sword. I can’t get in to see the Dr. until the end of Jan. for her to see me for this chronic pain.

I have heard so many ignorant statements such as, I don’t complain about it and try not to think about it. What? How can you not think about it when you’re in pain 24/7? Just stop thinking about it and move on. You look good. Ect……..

I used to have a lot of energy and now I’m just tired all the time. I have to have comfortable chairs to sit in when I go to someone else’s house. Driving anywhere for long periods of time is out of the question. Lifting babies, out of the question.
This letter really hit home for me. I’m hoping that people will read it and try to understand what it’s really like to live with chronic pain. Thank you to the author. You hit the nail on the head, so to speak.

You are not alone