|
Welcome to my CaringBridge Page! My name is Kerri. This page is here to update those interested in my journey through conversion disorder. Much of this introdcution was written at the inseption of this page. Much as changed since then, so check out my journal entry to see what is going on now!
Conversion Disorder is a fairly rare disorder. In short it is the sub-conscious part of the mind expressing stress through physical symptoms. It is a lot like when a person gets a headache from a stressful day of work, but at a deeper level. The symptoms that are caused by conversion Disorder can include paralysis, difficulties walking, difficulties swallowing, blindness, psychogenic seizures, or speech difficulties. Conversion disorder often mimics a neurological disorder such as MS or Epilepsy. These symptoms can not be explained by a physical reason or medical condition. Yet, they are very real and often times very debilitating. The symptoms appear in the first place because the mind is protecting the person from a psychological stressor that can sometimes be very traumatic. The psychological cause for conversion disorder is unknown to the person with it and so both physical and psychological therapy is suggested as a form of treatment. There is no real cure for conversion disorder because much is still to be learned about the mind and body connection but in most cases these therapies along with some others are helpful. It really depends on the individual as to what is most helpful. Recovering from Conversion Disorder is often a very slow process because of the psychological and sub-conscious aspects of the disorder.
My own fight with Conversion Disorder most likely began when I was really young... One of my most prominent symptoms is swallowing difficulties and I remember being really young and being frustrated when finding out we were having a tough meat like steak or even meat loaf for dinner because it would take me a long time to finish eating and I would have jaw pain afterwards. I have never been able to swallow pills which my paediatrician said was due to a “psychological reason” but that was never looked into. In the summer of 2001 I was diagnosed with epilepsy and put on anti-seizure medication. During the fall of 2002, I chose to stop eating. I was weighing myself twice daily and only eating a few hundred calories in a day. At the time, I thought it was anorexia or a similar eating disorder. But in looking back, I now believe that I stopped eating because swallowing was so difficult for me. Having anorexia was simply a socially acceptable way of not eating, or so my sub-conscious mind must have thought. Professionals agree with me that it was not anorexia or an eating disorder, but actually conversion disorder in a different form, because I was able to begin eating regularly quickly and eating disorders do not work that way!
My current difficulties with conversion disorder began when I contracted a cold which flared up my already present asthma. I also was diagnosed with pneumonia. The things that worked for my asthma did not work this time. I went through a few treatments of prednisone and several trips to the emergency room for breathing treatments. Finally, my family doctor scheduled me for a pulmonary function test, to look at how well my lungs were holding volume. The technologist that did the PFT was so worried by the results she asked me to go to emerge right away. I did so reluctantly as I had had a bad experience at emerge previously. One of the times when I was at emerge for yet another test, I began having seizures, which is not unusual because of the epilepsy and we thought I was not on the correct seizure med. The emerge staff felt these seizures were a-typical and so did an EEG right then and there. The EEG came back negative as in no seizure activity, yet I was still seizing. Some of the staff then began treating me with contempt and saying things such as “Stop. You know this isn’t a real seizure.” They did not do anything medically such as give me adavan which would have stopped the seizures. Instead they allowed me to seize for two hours. I was unable to respond when I came out of them and so, in a what I now feel was an ironic twist sent me across town for a psych consult. The seizures I was having that day were psychogenic, meaning they come from the mind. This is different from epileptic seizures which are electrical discharges from the brain. I think of psychogenic seizures as the minds way of saying “I am overloaded!” The emerge staff did apologize officially for not handling my case better by contacting emergency contacts and reading pertinent information in my chart and I have since been to that same Emerge (for a different reason) with no lasting
Damage. So back to the day of the PFT, which was September 1, 2004. One of the reasons I was sceptical about going to emerge again was because I kept getting sent home even though I was the sickest I had been in quite a long time. I was having difficulties breathing, more seizures and had been having difficulties swallowing food. In fact I was mostly eating soft foods like cottage cheese, blue berry muffins and mashed potatoes.
I saw a respirologist who was worried that I may have had a neuro-muscular disorder so he admitted me for tests. I remember he said “I should be done with all my testing within a few days. Those few days turned into a four month long hospital stay! Most of my stay was at St. Mary’s General Hospital located in Kitchener Ontario. For the first six weeks I was on the Chest Unit, the sixth floor which is specialized for people with breathing or lung related difficulties. All of the nurses are Registered Nurses which is different from other parts of the hospital. I was lucky enough to have my own room. One of the isolation rooms in fact. I was not actually isolated. Within the first few days of being in the hospital I began to have difficulties with my balance and found walking quite difficult. So we began physio twice daily. I began to walk with a rollator walker to help my balance. A rollator walker has four wheels much like a stroller. It also has a seat and breaks. During those first six weeks in hospital I had many tests EEG’s for seizures, MRI’s for various neurological problems, a heart ultrasound, a lung scan and various breathing tests. I also had what is called a cookie swallow. During this, barium covered food is given to the patient and the results of the swallow are recorded through a type of x ray called video fluoroscope.
I was having so much difficulties swallowing. There were times I couldn’t even stay awake through a meal, that the decision was made to insert a feeding tube into my stomach. We had also done a calorie count and had discovered I was eating less then fifty percent of what I needed to be eating to keep my weight up. I ended up loosing twenty pounds between June of 2004 and September 16, 2004 which is when they put the tube in. The type of tube I have is a PEG tube, meaning it goes directly into my stomach from just outside my body. It goes through the skin, through the abdomen wall and into my stomach. At first I was hooked up to a pump to provide me with the nutrition I needed twenty four hours a day. The formula is a lot like ensure but with more calories. (Now in 3010 I received a J tube in 2008. It goes directly into my intestines. I use the g tube for meds and the j tube for feeds. I have a zevex infinity pump which weighs a little over a pound and fits in a little back pack so it is very portable and that is important since my feeds run all of the time at 60cc an hour) I was also getting speech therapy which provided me with breathing exercises to help with the shorness of breath I was experiencing. There was a period of time when we thought my symptoms were caused by vocal chord dysfunciton as well. All of the tests came back pretty much normal, yet I kept declining, especially in the seizure area. I would have seizures lasting up to 2 hours and at times was given up to 4 milligrams of adavan (which is a lot!) just to stop them! The seizures began interfering with physio so the arrangement was made for me to spend a week at the Epilepsy Unit at the London Health Sciences Centre in London Ontario. I left St. Mary’s via specialized patient transit on October 16, 2004.
The Epilepsy Unit was very interesting. It is an eight bed unit with its own set of registered nurses and neurologists. Each bed is set up with computer connections so that each patient can be monitored twenty four hours a day seven days a week by EEG for seizure activity. When out of bed, I had a little computer the size of a small purse that I could carry. It was connected to the electrodes coming out of my head, which were attached to my scalp with a sort of glue. That way I was still monitored. Everyone looked funny with Electrodes sticking out of their heads wrapped in gauze! Unfortunately I don’t have pictures of that. Hmm, maybe I am glad of that! I can tell you I was glad to get my hair washed the first day that was allowed! The monitoring at the Epilepsy Unit also includes video surveillance. Over each bed is a camera in the ceiling which also had night vision. Even thinner blankets were used on the beds so that seizure activity could be seen better by the camera. If I felt a seizure coming on I was supposed to press what looked like a call button for the nurse but which was really hooked up to the computer EEG and would mark that spot. That is how the neurologists could tell the seizures they were seeing were psychogenic. I had a very difficult time in London as I was far from my friends and family and the doctors had taken me off my seizure meds so I was really spacey and going through withdrawal affects on top of having more seizures. It was then that I found out, the most recent seizures were psychogenic.
I returned to St. Mary’s in Kitchener on October 20, 2004and by this time was unable to walk. This was most likely due to the conversion disorder as well. The arrangements were made for me to spend time on STRU, the short term rehab unit at St. Mary’s. So I continued with therapy, OT, PT and Speech for the breathing exercises and with the continuous feeds. I stayed on the general floor. Floor five for a week and a half. I was unlucky enough to be in a room with three other people. It was the most crowded room in the hospital I found out from the nurses. It must have been, my bed was almost in the closet!! But I made it through my time there and met some more wonderful people.
I was transferred to STRU on November 1, 2004 for some strengthening and more intense physio-therapy. It was around this time, the doctors diagnosed me with conversion disorder. They felt that all of my symptoms, the swallowing difficulties, the shortness of breath, the walking and balance issues and the psychogenic seizures were all due to conversion disorder. They did not tell me until a month or so later. This was so that I would be stronger and able to deal with such news. After all, it is difficult to hear there is no physical reason for the very physical symptoms one is experiencing.
So I spent two months on STRU. I was able to work from being totally wheel chair bound with two people assisting me for transferring to the bathroom, to being able to walk thirty meters with rests with a lift walker. A lift walker is a metal frame walker with no wheels and gives a lot of support to those with weakened legs. ON STRU I did physio twice a day with two an sometimes three therapists as well as daily classes which included social interaction. We played BINGO! And I won a lot! They also included small motor activities like arts and crafts. I made a bees wax candle and painted some wooden objects. Three days of the week, we had a group exercise class which worked on keeping our bodies moving and promoting a good range of motion. During my stay on STRU I was also able to change the schedule for my tube feeds to ten hours over night. We also began reintroducing oral foods and by the time I left the hospital I was able to eat small amounts of hot cereal, muffins, milk, mashed potatoes, soup and pudding. I was discharged from St. Mary’s on December 29, 2004, just in time to make a fresh start with the new year!
As you can imagine a four month hospital stay is very stressful in itself. But I had many other stressors affecting my ability to recover. My wife of a year and a half at that time, could not handle the stress of me being sick and the many changes both physical and emotionally that were occurring. We began having more and more arguments and partly through my time away from living with her and official hospital opinions, I discovered that she in fact had been emotionally and verbally abusive towards me. This was noted by many staff members at both hospitals. For health reasons, and my own well being, I made the decision to separate from her when I left the hospital. Because of being sick, I was forced to retire my guide dog, Dixie of two years because I was no longer able to work her or even do obedience with her. Because we did not know how long it would take for me to regain walking skills, I sent her back to the school she was trained at. I miss her terribly. Because I could not go back to live with my wife, I moved in with my close friend Trish. I had originally met Trish because she helped with grocery shopping each week. As you can imagine my entire life has been turned upside down by conversion disorder. Within a few weeks, I was left with the inability to do much of anything independently and am still working on regaining that independence which up till now had been a big part of my life. I have had many supportive people through this time. All the staff at St. Mary’s hospital went over and beyond the call of duty. I would love to mention specific names but do not want to do so without permission. So I will just say, you know who you are!! Here at home I have the loving support of people like my parents, Trish and my many friends across the States and Canada. I am thankful to all of them!
Now that I am home, I continue to work towards the goal of becoming independent once again. To do this I have had help from CCAC which is the home health care organization in Ontario. I have worked with OT’s Physios, and dieticians since I arrived home. THe physio and OT have both discharged me as I am at sort of a plateuas far as progress goes. I, myself and several of my other service providers along with my mom feel that this is an at least semi-permanent situation. So I am treating it as that so I don't continue to beat myself up for something I can't change. At this time I am using the wheelchair for every place I go and I am unable to swallow anything so am hooked up to my feeding pump 20 hours of the day. But I have a backpack it can fit in so I am not attached to an IV pole for all of that time. My psychogenic seizures occur about every other day more if something is going on and my shortness of breath is on and off too, but of course much better then it was when I was in the hospital. So I have improved some since I was admitted to the hospital last year but regressed in other ways. However I am working each day towards my goals. And I am taking it a step at a time! Thanks to all who have signed my guest book. It helps give me encouragement! You all have left such heart felt messages. Thanks!
Journal
Sunday, June 5, 2011 5:32 PM CDT I went to the ER last week withchest pain that was non reproducable. It is non cardiac and now we are thinking it may be GI system related. We are thinking severe reflux and have been playing with my rates on my feeds and I have been talking with the dietician over the last week. I see the doctor aggain this week and my nurse esaid to have her check my gall bladder as all blood tests came back ok and I am having nausea too. Am taking phenerrgen for that. But am still uncomfrotable. My doctor thinjks the nasuea and chest pain are co symptoms and we also think I have less conversion disorder then may have been thought in the beginning for many reasons, one of which being my symtpoms have not improved eveen though my psych stuff has. For example, my swalalowing stuff is jsut as bad as it was. I will write a post specific to do that one of these days. But right now we must fix this hurdle of whatever is wrong now. I have chest pain, nausea, on and off diziness and light headedness. There has been the possibility of POTS as an answer but we are not sure on anything and I got a new back more mywheelchair which is already improving my posture.
Sophie continues to do well and we were in the Coloradoan in APril they did a really good story callled Once a stray rescue dog leads the way.
more later!
Read Journal History
Links:
|
|
