Medication overload!

I thought it would be appropriate to make an entry about a little mishap that I had last night. I always hear stories of people who have forgotten to take their medication. I have also heard from people who try to play catch-up if they have forgotten to take their medication for several days up to a week! All of these things pointing to a possible disastrous outcome.

Last night, my head was killing me. I often get headaches and some of them are quite severe. I had a cousin visiting and did not want to leave the conversation, so I waited for him to go and then headed into the bathroom straight for the medicine cabinet. Typically I will down 800 milligrams of ibuprofen and that will sometimes keep my headache under control until I sleep it off.

I stuck the container back into the medicine cabinet, threw the pill into my mouth, and downed a glass of water. After exiting the bathroom and making my way back to the sewing machine, where I had some projects waiting for me, I realized that I had taken my epilepsy medication instead of ibuprofen! It just made me sick to think of what I had just done. My husband is always harping on me to get a pill box, but I have gone through pill boxes and just never liked them or was too stubborn to resort to them, thinking it would just make it seem like I was "sick" to have to take a daily medication... let alone display it to everyone! And in this situation a pill box would not have really helped if I kept the main medicine bottle in the cabinet anyway.

There is really not a good way to throw up Lamictal. These tablets dissolve so quickly when they touch any type of moisture. Dropping a tablet in the sink at times has caused them to dissolve before I get a chance to pick it up to save the expensive little pill. So I knew trying to get it back out was not really going to be an option.

I have had too much medication in my body a couple of times before and I do remember the symptoms. The first time I had this happen, I was in the process of increasing my medication, which is supposed to be done very gradually. My neurologist wanted me to increase my medication an additional 100 mg. I was told to take the additional 100 mg and then keep that new dose going from then on. Unfortunately, my body weight was not really taken into consideration with this increased amount happening all at once. About a half hour after taking the additional 100 mg I could barely feel my arms and legs. They were numb and tingling. My arms started to tremor and I felt like passing out. I left work, went home, slept it off and was told to make a gradual increase over the next several days.

When I first went on Lamictal, I was weaning myself off of Neurontin at the same time. Weaning off of a drug has to be gradual also. My Lamictal was increasing about 25 mg a week and my Neurotin was decreasing about 100 mg a week. Every Friday I would have seizures, which were from withdrawal of Neurontin. I was on such a large dose of Neurotin that when I weaned off of it it took months. My Neurotin dose was 3900 mg.

About two years ago when I was having severe migraines I was referred for an MRI. The MRI revealed a pituitary tumor. I assumed that this was the cause of my headaches, but that was not the case. After testing blood levels for my epilepsy medication, I found that I had twice the blood level than what I normally have in my system to be at a therapeutic level. This was causing the headaches. I had recently gone off of a birth control pill. Apparently with some medications, getting off of some of them allows you to decrease your epilepsy medication because the other medication (in this case, birth control pills) can make the anticonvulsant medication less affective, so you need to take a higher dose to compensate. When I went off of the pill I did not lower my anticonvulsant medication. Once the blood level came back too high, we realized that I was at a toxic level for me and my medication was gradually decreased to be almost half of what it was prior to the removal of the birth control medication.

So you can see my dilemma last night when I accidentally downed extra medication instead of ibuprofen! A quick call to a nurse and a transfer to the poison control people, along with downing a piece of peanut butter toast and heading to bed took care of any unforeseen issues for now! Read more!

Prescription woes...

At the support group meetings I hear about prescription issues all of the time. Many of the people I have met do not have insurance coverage, or have inadequate prescription coverage. Some people cannot work full time so they are not able to keep benefits, and then have the issue of having to pay out of pocket for their medication.

I have been lucky enough to be able to work full time and keep insurance benefits even during the most trying years. My co-pay for my medications has never been very high. I just switched to a high deductible plan a couple of months ago after our daughter joined our family, thinking that it will be a better plan for us and most economical in the end. When factoring in medications or what they call "maintenance" medications, it is always risky to switch plans or not be very clear on what your coverage is for prescription costs.

This new plan has my prescription co-pay for one drug at $770 for a 90 day prescription. I about fell off of my chair when I heard the cost. At the end of the insurance plan year, I will have to see if I come out ahead in paying a lower premium with a high deductible plan. With the adoption of our daughter, came orthopedic appointments, pediatric cardiology appointments, and a recent trip to the ER for a subluxation of the elbow!

I am still so thankful to have insurance regardless of what my out of pocket cost is at this point. But I think often of the people who do not have insurance or have inadequate covereage. And I am listening carefully as our politicians talk "healthcare".

I have met many people who do not have prescription covereage, who do pay out of pocket costs for their medication. Many of them do not know that there are programs available, some through the drug companies themselves, that may assist them in affording their medication. I always hate to hear people say that they decided to take half the dose of their prescribed medication so that they can save money by getting twice the amount out of their monthly prescription. This is obviously not the smartest thing to do, yet I do realize that there are times when people may feel very desperate about things. And it amazes me how little people with Epilepsy know about their own condition.

When I was first diagnosed, I read everything I could get my hands on about Epilepsy. I read so many things on the internet on studies they were doing with rats and all kinds of craziness. My neurologist at the time said, "Stop it! you'll drive yourself crazy!". I had all these visions of an overnight "cure" for what was happening to me. But that never came. I hated the thought of having to take a daily medication. I had never had to take anything my entire life and had rarely even had an aspirin. So it was hard for me to give in and become so dependent on a drug to relieve my symptoms. But even now, 9 years after diagnosis, each time I take my medication I silently thank God for the pharmaceutical companies and research firms that have saved my life.

I spent a week at United Hospital in St. Paul, MN in 1998. It was the week of Thanksgiving. Every Thanksgiving I am reminded of that week and the time I spent hooked up to 24 hour EEG and video monitoring. When our family circles the table and says what each of us is thankful for, I am always thankful for the wonderful physicians, research, and medications that have helped me to get this far. This year I will be thankful for my daughter and be thankful for China, looking past my medical woes and allowing my husband and I to bring this beautiful girl home with us. Read more!

Off days...

I thought I'd post today because I am feeling a little "off". In the earlier days of my diagnosis, I felt "sick". The medications would often make me sick. When I was on Tegretol I felt sick all of the time. Sometimes taking a big glass of milk with my meds helped to ease my stomach. Otherwise, I just got through each day and tried to eat what I could. My gums bled, my hair fell out, my balance was off. I could barely put my pants on in the morning because my balance was so poor. At work, if I dropped something I felt so dizzy leaning over to pick it up, even when I was in a sitting position at my desk. It was just awful. I felt so unstable, both physically and emotionally.

Being on Tegretol at that time did not help me with my seizures. But I have met lots of people who have been or are on Tegretol and they have had no issues with it and have gotten better control of their seizures. So my comments are not meant to put Tegretol in a bad light. It just did not work for me and I was miserable on it. I'm digressing...

I think everyone out there that has Epilepsy will at some point feel "off". Most of the time now I have good seizure control. But there are things that tend to make me feel off. This week I have had chest congestion. It's not really a cold, just a deep cough. Because of this, I am not sleeping well and maybe get 4 hours of sleep. If my sleep is interrupted, things are worse. My daughter has been coughing like this also and so that has me up at night. I have found over the years that "uninterrupted" sleep is what I need. Even if I'm in bed 8 hours (which is rarely the case!), if it is interrupted and I never hit deep sleep, I am just not at 100% the next day.

I was always very healthy until I started having seizures. I cannot think of a single time when I was really ill. But since the Epilepsy it seems that when I do come down with something that it takes me forever to beat it. Some of this is because there are many medications that you cannot take with the anticonvulsants, and some of it is, at least in my case... I feel as if my immunity has gone down and it just takes my body longer now to fight back.

There have been times when I have taken antibiotics or other drugs to help with an infection, such as an ear infection, that has "clashed" with my medication or with my seizures and caused a chain of events that has eventually led me to having to increase my Epilepsy medication... sometimes, significantly. Over the years my meds have fluctuated because of these events.

Today, I just feel like I'm on the edge of a seizure. Waiting for a breakthrough. I am glad that I have not had anything come through, but I feel "off" and feel like I'm waiting for the other shoe to drop. I have not had a seizure in awhile so I feel frustrated that I am not feeling 100% "normal" for me today.

One of my neurologists has told me that you sometimes get "bits and pieces" of a seizure but not a full seizure. There are moments, even for a few seconds, where I feel "odd" or that something is going to happen, similar to when I have auras. Because they are such short time periods I go back and forth in my mind, wondering if this is a "bit and piece" of something greater that wants to break through or if I am just imagining the feelings. Read more!

Epilepsy and adoption

It has been 9 years since my diagnosis. Looking back now, I have no regrets and no anger about what has happened. That does not mean that it has been an easy journey. Everyone handles their diagnosis of an illness differently. Everyone has to come to terms with what they are dealing with and manage it in the best way possible in their own amount of time. What I have found over the years, in meeting others with Epilepsy, is that everyone has their own amount of tolerance and some people may take a year or two to come to terms with living with seizures and then there are others who I have met who have still not reached that point in their lives.

I have met people who have had Epilepsy since birth, who carry around so much anger. I was diagnosed at 30 and was angry initially because I could not understand what happened to cause this to occur. Not knowing what the cause was drove me crazy. I am a very logical person. Things have to have a reason or an explanation, and yet I had no concrete data. The theory is that there was a brain infection. It sometimes makes me sick to think about it. How can one get a brain infection and did I miss signs of it? Could I have prevented it?

One of the saddest things, that I still think about often, was hearing my mother ask the doctor, "Did I do this to her? was it something that I could have done while I was pregnant with her?" It never dawned on me that my own mother would question "why" this happened also. And now, today, I can say that I understand why she asked the question. She too was reaching for some logical explanation and carrying around the burden of not knowing.

After three years of marriage, my husband was done with the experience of being married to someone who had seizures. We separated and then eventually divorced. It was a somewhat silent understanding. There was no anger; there was disappointment. He was disappointed that the person he had married had turned into someone else. I was someone who shook uncontrollably at times, who tremored when I slept, who felt faint often, had a terrible memory, and was so drugged most of the time, my personality was zapped from me. He had not signed up for this. Unfortunately, neither had I.

I have since remarried, and have a wonderful husband who is very understanding of my Epilepsy. He goes to the support group meetings with me and is involved in all of the activities that I am part of in regards to the Epilepsy Foundation and its work.

I was single for almost 7 years, between my first marriage ending and my marriage to my current husband. I was perfectly fine with not marrying again. But then I met my husband...

My husband was injured at the age of 17, in a horrific automobile accident. As a result, he suffered a traumatic brain injury as well as numerous other physical injuries. He went through the stages of a coma, and had to rehab, learning to walk, talk, swallow, and think all over again. He graduated his senior year of high school in spite of it all and went on to finish college at the University of Nebraska. He has spent the last 7-8 years working with brain injured individuals and is involved locally with the brain injury council and is starting to get involved with the legislative portion of people with disabilities like brain injuries.

Two months ago we travelled to China to bring our daughter home. We filed our adoption paperwork about six months after our wedding date. We received a call in January and were told that we had a little girl waiting for us. We travelled in July to bring Ava home to Nebraska.

The adoption process was extremely stressful. As I mentioned earlier, I had eventually accepted my epilepsy and my new husband had lovingly welcome everything about me into his life. But when we started the adoption process, my epilepsy got in the way again and I began to feel a little angry about it, even after all of these years finally feeling comfortable and coming to terms with my diagnosis.

The adoption agency received our application and phoned me. "Your application looks great! The only thing we noticed is that you have marked on your form that you have Epilepsy." You have to disclose all medical information when you file adoption paperwork. I had listed my Epilepsy, along with a fairly newly diagnosed pituitary tumor. The tumor was not an issue. But China did not find seizure disorders acceptable for adoptive parents. Apparently an adoptive parent had a seizure in Tiananmen square and no one was able to give her aid. Ever since the incident, China has been more careful about screening and accepting any type of seizure related disorders.

The adoption agency asked me to send them supporting documentation, explaining in detail more information about my seizures. I did this, and they were able to get a pre-approval based on the information I gave them. Mutliple times during the adoption process I had to back up my medical information with more documentation. I had letters and documentation from the neurosurgeon about my tumor, letters from my epileptologist, and my primary care physician. In fact, in May, two months before we received our travel approval, China came back to our agency and wanted yet more information on my seizures. They wanted to know... how many, what were the symptoms, what medication, how much medication, etc. I was so worried that they would eventually deny our application and dossier paperwork in China. I felt like I was on the edge of my chair for months.

In spite of all of China's lack of information on seizure disorders or their lack of understanding it fully, my husband and I were able to bring our daughter back to the U.S. with us. We would like to go back to China to adopt a second child, but unfortunately, China has changed their laws, as of this past May. These new laws will not allow a parent with a seizure disorder to adopt. Seizure disorders and other types of medical issues are part of their screening process now. Many of the websites and information that I have read regarding their new laws, place Epilepsy into the same category as bi-polar and some of the other disorders.

The theory is that China feels that they need the best parents possible to adopt the children that are left in China. They feel there are mostly children with special needs left in China and that they should have the best possible candidates for parents.

Our daughter came from the special needs or Waiting Child program. She was born with bi-lateral club feet. She now has a mother with Epilepsy and a father with a traumatic brain injury. We are the luckiest people alive! And who better would understand a child with needs than parents who have taken unbelievable journeys themselves?

I will always hold a fond place in my heart for China because they gave us the gift of our daughter. But I will also work very hard to make sure that the word gets out there about epilepsy and seizure disorders. In the United States, we are very fortunate to have so many services available for people with disabilities. There is still alot of misunderstanding and misinformation about epilepsy. I saw it in my marriage and I saw it through the adoption process.

If just one individual with Epilepsy could speak out about their experience with seizures to one other person, that shared knowledge brings us all closer to getting the word out. Read more!

A seizure disorder diagnosed

During those six months prior to diagnosis, the episodes that I experienced evolved and took on a life of their own. The funny taste in my mouth did not always come, but I almost always felt like I was going to pass out or that my head would drop if I did not fight to keep it upright. As time went on and emergency trips revealed nothing, these moments of odd feelings turned into things that became more physical and became more noticeable. The episodes also started occurring more frequently. They started out occurring every few days, and then went to daily and then eventually several times a day. It was very frustrating. I would try to remain calm during them but was so confused and so afraid most of the time. By the time I'd get to the ER the episode would have passed.

At some point, I went to see a family practice doctor. One of the emergency room physicians referred me to him. At my appointment I was seen by an elderly doctor who was apparently getting ready to retire. He said that he could see me one time. I would have to be passed to someone else if I needed to continue visits for anything. He was the sweetest doctor. I had a complete breakdown in the exam room. I could tell he took pity on me. He said that he would refer me to a neurologist. He also thought it would be a good idea for me to wear a holter monitor since I kept describing my low pulse and the moments when I would feel as if I was going to lose consciousness.

The next day I headed to the hospital to get fitted for the monitor. I also had a neurology appointment with the local neurology group. I was anxious to see the neurologist because I felt like he may be able to help me with whatever was happening. I explained my symptoms to the neurologist. He said that it sounded like I was having anxiety attacks. This made sense to me somewhat, but I was having them because something else was happening before the panic attack.

I had also been scheduled by the family physician to have an EEG at the hospital. The EEG revealed nothing, or at least that is what the neurologist told me when I went back for my second appointment.

In the meantime, I was having the episodes several times a day. New symptoms were being added. I would typically have the funny taste in my mouth or I would feel like passing out. Eventually, one side of my body would shake or tremor during this time or I would have a more violent jerk after the odd feelings would pass. Most of the time my arms would lock and shake uncontrollably. As time went on, tremors in the legs were added to the ritual. I found that my back and muscles ached afterwards. Most of the time the entire episode would last around 15 minutes or so.

Things seemed to be evolving steadily. I felt like things were getting worse but no one knew what was wrong. I saw a heart specialist who said that my heart was fine. The neurologist was frustrated with my insistence that something was wrong. He ordered another EEG and an MRI.

Steadily, the episodes became more intense and I started to worry about driving. Sometimes it felt as if I did not have enough warning ahead of time. I worried about not being able to pull the car over to the side of the road before things would start to fall apart. My parents and co-workers started to take turns driving me to work each day.

Things evolved very quickly. I started to have biting or uncontrollable movements of my jaw and mouth. My teeth would uncontrollably go through a biting frenzy. There were times when I had to lay down to get through the episode. Other times I could hear everyone talking and I was aware of things, but I was not able to open my eyes. My eyes would sometimes go crazy with movement. There were times when I felt like I was floating outside of my body observing things. I would sit through meetings and feel as if I were in a dream. I sometimes would not remember what was said afterwards. I found that just moving from my office down the hall and into someone else's office was not always a successful journey, as I would have to sit down part way just to have an episode. I would shut my office door and get to the floor in time for the next episode. Things were crazy and I felt my life was out of my control.

I found that night time was no fun either. Falling asleep concerned me. What if I did not wake up? I worried all of the time. My night time routine for these episodes differed from my daytime routine. They were much more violent. I would have intense jerking and uncontrollable biting. My head would jerk back and forth uncontrollably. I would almost always have a headache afterwards. I was conscious through it all. I remembered every moment. I found that sometimes afterwards I would not remember names of people. I could not remember my parents names sometimes after an episode, but I always knew who they were. I would try to recall my husband's name or my sister's or brother's name. I had a hard time remembering things that were short term too.

My second EEG was done by the same hospital EEG technician. He was a very nice guy and seemed to have sympathy toward my situation. For this second EEG I had 24 hour sleep deprivation and I also was instructed to stop taking the Ativan that the neurologist had prescribed for my 'panic disorder'. The EEG technician also used the strobe light during my test. I felt exhausted and stressed out. My MRI was scheduled to be done right after my EEG. I was worrying about that as well. The EEG and all of the stimulation that came with the test sent my body into another frenzy of movement. The strobe light, even though my eyes were shut, was so annoying that I felt like I was overstimulated and that I would literally lose my mind! When it was over, the EEG tech told me that he felt that he had recorded something that would help me. I told him that the doctors do not believe me. He said that what he recorded that day would help me. He wished me luck on my MRI, but also said that he was concerned for me and felt that the MRI might hold a clue for me. This worried me, but it was almost a relief to know that someone believed me and I wasn't crazy! Read more!

The evolution of a seizure disorder

Once I was back in Nebraska and working it seemed as though those odd episodes that I had been having had subsided. I went to work daily and spent many hours at the office since I did not have a spouse to go home to. Work consumed my time and I was happy to pass the days quickly hoping that at some point I would receive a phone call from my husband telling me where we would be moving next. I was not traveling as much for my job, but had arranged an agreement with my CEO that I would be able to fly back to New Mexico to our home every couple of weeks to check on it while it was up for sale. I could fly for free since my husband worked for a commercial airline so it was not a hardship to the company and I was able to work remotely.

Because I worked at a software company there were always new things to learn and I managed Client Services, which involved the technical writing, technical support, and training departments. It was a busy job but I loved it. There were a lot of things to learn and I felt like my memory was always so sharp because of the type of work I did. The types of information that I had to retain when new software was released was sometimes intense but it was always a challenge and kept me going.

One of these busy days in the office, I was standing behind one of the staff members in the technical department and was leaning over his shoulder showing him some things in the software. I suddenly felt a rush of adrenaline. I had a funny taste in my mouth and for a second or two my head dropped down unexpectedly. I panicked, remembering the episode that I had had in Florida months earlier. I had the same type of feelings. My legs felt numb and my face and lips felt bloated and paralyzed. I excused myself and went into the restroom hoping to pull myself together.

Once I was in the restroom I splashed cold water on my face and saw the same pasty white pale skin I had remembered from my Florida trip. It made me sick to my stomach, as I wondered if I was having a stroke. I sat down on the bathroom floor because I felt like I was going to pass out. Every few minutes I would have the same type of quick head drop that I had experienced earlier. Because I was afraid to be alone, I made my way to the Human Resources office where a woman I had known for years was working at her desk. I told her I wasn't feeling well and that I thought I was going to pass out. She told me to sit in a chair and put my head between my legs. I tried to convince myself that this made the feelings go away, but that wasn't the case. After a few minutes of this ridiculous pose, I ended up laying on the floor because I felt as if my whole body would tumble forward.

I had her call my father who worked about 15 minutes away from my office building. I was afraid to drive home. He came right away and escorted me to his car. Once we were in the car and started to head home, I felt that rush of adrenaline again and that funny taste came back. I leaned forward and grabbed the dashboard. I told my father that I did not feel well and that something was happening to me. He asked me if he should take me to the emergency room. It did not take long for me to reply with a "yes".

At the emergency room, the doctor wanted to take blood to do a blood serum pregnancy test. I told them that I knew I was not pregnant. They asked when my last period was and I could not remember, as I was still skipping cycles and never had a set pattern. He assumed it was a pregnancy. Blood was drawn and the results were negative. I explained to him what had happened and that I had gone to the restroom at work to sit on the floor because I did not feel well. Fifteen minutes later he would come back to my side, tell me I was not pregnant and then proceed to tell me that some people feel like passing out if they have a bad bowel movement. I told him I had not had a bowel movement in the bathroom, and that I had just sat down on the bathroom floor because I did not feel well. Again, he stated that people sometimes feel lightheaded when they go to the bathroom. This was all completely irrelevent of course and completely ridiculous, but I was so tired and exhuasted from the episodes that I just really did not care anymore. I just wanted out of there.

My father drove me home and I tried to put the incident behind me. I felt ridiculous and embarassed. I started to think that I was making things up and that what was happening was not physical but just in my mind. Am I losing my mind? I normally was a very logical person. There was no explanation to anything I had experienced and no one saw any outward signs that there was an issue. I started to doubt everything. I even thought back to the episode in Florida and all of the odd feelings I had in New Mexico. These may be in my mind. My body was showing nothing.

Little did I know that this was trip two to the ER and eleven more trips would occur in the months that followed. Read more!

My journey to diagnosis

Since my first experience with what I now know was a series of seizures, I have met so many people who have told me stories of their own struggles to find a diagnosis. What I have learned these past 9 years is that I am one of the lucky ones, to have been diagnosed as quickly as I was. It took six months or more before I was "officially" diagnosed with a seizure disorder. Shortly after that the word "Epilepsy" became a common word in my vocabulary. I was reminded constantly that I had Epilepsy now, as I drugged myself daily and sometimes every couple of hours with medication that would drag me down to the lowest of lows.

Those six months were the longest six months of my life and were also some of the most challenging to me as a person. Initially, after that first "episode" in May of 1998, my life felt like it was moving in the right direction. I was a newlywed and was trying to settle into a new role as a wife. Once some time had passed after my trip to the ER in Boca Raton and I was back home in New Mexico, I was able to put the whole incident behind me and move on. I honestly did not think twice about it, until...

A few weeks after returning from Florida, I started having brief moments of odd feelings or sometimes I would feel lightheaded or weak, as if I was going to faint. Our house had several levels of stairs to access the different floors. My office was in a loft area at the top of the house, so I made many trips up and down daily. There were times when I felt like I was going to fall down the stairway because I felt like passing out. I would feel as if I were on the verge of losing consciousness but then never would. The feeling would eventually pass.

During this time, when I was not traveling for my job, I spent time writing documentation for the software company. I would sit for hours at my keyboard and write. There were times I would look at my hands but I would not be able to feel them or move them. I would feel numbess in my arms and fingers. Other times I felt like my heart had skipped a beat or that I wasn't really there. Sometimes it felt like my heart was going to stop beating. But I would check my pulse and sure enough I was still there! But my pulse would sometimes plunge to a very low number. These were the times when I would sometimes feel faint.

My husband and I had decided to try to start a family. I had a history of missed periods or no menstruation at all, so I wasn't sure how difficult it would be for me to get pregnant. But because of the sporadic cycles I would not know if I was missing a period because that was a pattern I had or if I was truly pregnant. When all of the odd feelings of numbness or feelings of passing out started occurring I began to suspect that I was pregnant. I was buying pregnancy tests all of the time, but they were always negative. I could not understand why my body was feeling so odd some of the time. I just assumed it must be a pregnancy.

At about this same time, my husband and I found out that he would be getting assigned to a different domicile once he was through his captain training as an airline pilot. I knew this meant that we would be leaving New Mexico. Our house would go up for sale and we would wait until we found out when and where we would have to relocate. I received a promotion to a Vice President position at the software company, but I would have to move back to Nebraska to take the role. My husband and I felt that it would be a good career move until we found out where we'd be permanently relocated. It could be a year or more before we'd be permanently assigned somewhere.

Our house went up for sale and I moved back to Nebraska to an apartment, while my husband continued his training and flew in and out of different cities each month. We would try to see each other as much as schedules would allow. I slipped into my new position at work and was also happy to be around my family again, as they all lived in Nebraska or surrounding areas. Even with all of the exciting changes I still yearned to be back in New Mexico in our home, but I knew this was the right decision for us at this time. I would ride out my time here until we knew of a permanent relocation. Read more!

My first trip to the ER

At the time, I had no idea that this would be the first of many trips to the emergency room. The ambulance ride was somewhat uneventful, as it seemed to go quickly and I felt more at ease just knowing that someone was with me. I kept thinking to myself, am I dying? did I have a stroke? What will my husband say?

I was married in September of 1997. So I was a fairly new bride still. All of these thoughts of my wedding and my husband were spinning through my head. Am I going to be able to work tomorrow? or drive myself to the airport so that I could fly back home? If something happens to me no one knows me around here.

When I arrived at the hospital, the emergency techs kept telling the doctors and nurses that I was having an allergic reaction to Relafen and Norflex. They kept pumping me full of Benadryl. It was making me drowsy and relaxed. I thought it odd that they accepted my own diagnosis of the situation. I would have thought that maybe I would have had an immediate reaction to the drugs when I had first taken them the night before. Afterall, I had thrown up the other muscle relaxant that the doctor in New Mexico had prescribed a few nights earlier. I had felt odd earlier that day so maybe they were right and it was just taking a little longer for me to have the full reaction. My body was acting out, fighting the toxic mixture.

The Boca Raton emergency room was crazy. It was packed with people. It was loud and there were people running everywhere. There was no room available in the ER, so the staff left me on the gurney in the hallway. There were other patients lined on gurneys against the wall with me. I thought to myself... this is just nuts! Were there others in the rooms that had worse conditions than ours? Was I in a bad neighborhood with gangs? Were gunshot victims in all of those rooms that lined the hallways?

Suddenly I felt like an idiot. Maybe I had dreamt the whole episode. It was at about this point that I realized that I was just in a t-shirt and underwear. I had decided back at the hotel room that I would hop into bed and watch TV after I ate. In all the chaos I completely forgot that I was just in a long t-shirt with no shoes or pants on! Luckily I had the sheet draped over me. The thought had not yet crossed my mind yet as to how I would get back to the hotel.

I started feeling a little nauseated and was getting very aggitated as I was constantly hearing machines beeping and alarms and bells sounding. People were on monitors and those were sometimes going off. The staff was so busy that they did not get to patients very quickly. The machines were loud and I felt like the noise was almost too much to bear. It seemed as if it was magnified. There were moments where I felt like I would go insane.

I happened to be on the side of the hallway where there was a large round clock hanging above my head. It stuck out from the wall and I could see it so clearly. It was not flush with the wall, but instead sat perpendicular to the wall so that people walking down the hallway could easily view it. I found it somewhat troubling to watch the clock. I knew exactly what time and how long it took for each person to get to a beeping machine or to check on a patient. No one acknowledged my existence.

I started to feel as if I would pass out. I held out my arm and tried to grab someone walking by. There was a male nurse that came to my side. I told him that I did not feel "right" and that I felt like something terrible was going to happen to me. He said that he would be able to get a doctor to me soon. I told him I didn't want him to leave me. He took my blood pressure and my pulse and promised that he would be back shortly.

After he left, I began the short moments of feeling the loss of time again. This time my head could not drop because I was laying down. I felt like I should sit up so that I could stay awake. Maybe the Benadryl was making me drowsy and that is what was happening this time. But I was wrong. I started the ugly cycle of going in and out of reality, but always just for a brief amount of time. I watched the clock and I was having these moments every 3-5 minutes. It was like clockwork. It was a cycle and had a pattern. What is happening to me? Am I dying? I will be so angry if I die on this gurney by myself in Boca Raton. It could be days before anyone knows who I am. I had no ID on me. My purse was back at the hotel.

I saw the nice male nurse again. I told him that I was having moments of loss of consciousness and that I felt like I had to fight to stay alert. He said that I had a lot of Benadryl. He told me that he wanted to take a blood sugar test. I told him that I had eaten a couple of hours earlier. When he checked it he said that it was "high". What does that mean? I knew nothing about blood sugar or diabetes.

After about a half hour, those brief moments of darkness had ceased. I felt like I was finally part of the world again. I was starting to feel better. A doctor came to me and asked me who my regular physician was. I told him that I did not live in Florida and that my regular doctor was in Nebraska. I had not been to a regular doctor in New Mexico yet. I had only lived there since I got married, but had not had a reason to go to a general practitioner for anything. I never got sick and never really needed a regular family physician in general. Ironically, at that moment, I caught a glimpse of the doctor that I had been working with there in Boca Raton. I told the ER doctor that "he" was sort of my doctor. "Please get him. I know him. He is my doctor in Boca Raton." He brought the internal medicine doctor over to me. He was surprised to see me. I told him that I thought I was allergic to the drugs he had given me. He told me that those drugs typically never bother any of his patients. He could not understand why I would suddenly have a problem with them. I asked him if he would be my doctor, but he said he had a patient who was in an emergency situation in the room across the hall and he needed to go to him. He wished me well and went on his way.

The ER doctor told me that he was going to dismiss me since I was feeling better. This really frightened me because I felt like I did not really get any answers. They were all just taking what I had said and turned that into my diagnosis. The nurse was then sent over to me with discharge papers. I told him that I was just in a t-shirt and underwear. I had no shoes and no purse. He told me that he would have someone call a taxi for me. He told me I could wear the socks that they had put on me. About 20 minutes later, I was told that the taxi was waiting for me.

I walked out into the darkness. It was moist and humid out. Typical Florida I thought. It felt muggy and I felt icky. It was almost 1:30 in the morning. I slid into the back of the cab and hoped that the driver could not see that I was wearing no pants. I told him where I thought the hotel was. When we arrived at the hotel, he told me what I owed him. I could not believe that he wanted me to go inside, in my underwear, and get money for him. How humiliating. He would watch me walk into the hotel in a t-shirt and underwear and wait for me to come out. I wanted him to take pity on me and let me leave with a shred of dignity. But unfortunately, that did not happen. I suppose he had to take a fee and I thought that since he did not really seem phased by it all that he must have seen much worse than me.

I walked up to the front desk. I told them that I was the girl who had been taken by ambulance earlier that night. I did not have a key or my purse. Even with no ID, they let me into my room and made me a new key. I grabbed my purse off of the bed and went out to the cab to pay my fee.

When I got back to my room I started to worry that if I went to bed that I would not wake up. I thought I should call someone. I called the girl that I typically reported to at the company where I worked. She was back in Nebraska. It was late, but I thought if someone did not know where I was or what had happened that I would not wake up and no one would miss me the next day. I told her what had happened. She seemed concerned and asked me if I would feel up to working that next day. I told her that I needed to work at the doctor's office and then drive to the airport to fly back home that afternoon. I just had to get back to New Mexico and put this behind me.

I slept for a little while and then got up and packed my bags, checked out of the hotel, and headed into the doctor's office. I was supposed to train his staff for a few hours before leaving to go to the airport. I was not feeling "normal" or "stable". I felt very weak and my memory was terrible. I was constantly double-checking everything I did. I would place something in my purse and then check it over and over because I had forgotten what I had just placed in there. I remembered the software that I was teaching them, but was having a hard time with anything that involved short-term memory. I assumed it was probably due to the lack of sleep from the night before. I asked the doctor if I could go ahead and cut out earlier than planned so that I would have plenty of time to get to the airport.

I felt very weak and tired when I arrived in New Mexico. By the time I drove myself home I was exhausted from the whole ordeal. I had spoken to my husband on the phone earlier that day while I was still in Florida. He was in flight training in Texas. He was a pilot and was being promoted to captain. He seemed concerned about what had happened but we both knew that it was not feasible for him to fly home right now and interrupt his training.

That next day I decided to get some work done in the yard. I found it very difficult to push the mower across our front yard. It must have taken me three or four times longer than it usually did to mow. I did not feel like myself. My memory was also not back to its normal form. My mother-in-law called later in the day to see how I was doing. I told her that I felt very weak. She told me that when your body goes through a stressful situation like that it takes a toll and it will be a few days before I would feel back to normal.

Little did I know that it would take years before I felt like I was back to "normal". Read more!

Remembering May, 1998

I was scheduled to go to Boca Raton on a business trip in a few days. I traveled frequently for my job, installing systems and training doctors and medical staff on software. I was trying to relax and spend some time at my house in New Mexico until I was scheduled to leave.

A few days before my trip, I was in the garage exercising with some weights on some fitness equipment that my husband and I had. I pulled something in my rotator cuff that sent me into excruciating pain. A trip to the doctor a couple of days later sent me home with a prescription for a muscle relaxant. I was anxious to get a good nights rest before my flight the next day. I took the first pills and went to bed. Shortly after that I woke up vomitting. I thought that I must be having a reaction to the medication. I did not take it on the trip with me when I left the next morning.

After I arrived in Boca Raton the next morning, my back and shoulders were really bothering me. I found it difficult to sit through the day's training. The doctor that I was training happened to be an internal medicine physician. After he examined my back he gave me some samples that he had for Relefen and Norflex. He said those would help alleviate the pain so that I could sleep through the night.

When I arrived back at the hotel that evening, I ate dinner and took the pills and headed for bed. The next day I felt rested and took the second dose of the medications before heading back into his office for the day.

I sat with his office staff for severals hours. I remember at one point feeling very aggitated. I was not sure if I was tired of explaining things to them or if I was frustrated or annoyed because I had been sitting so long in one position. At different times I found myself spacing off or feeling like I was in a surreal moment, watching things happen in front of me, but not really being a part of it. It was like watching a movie, but I was not in a starring role, in fact I wasn't a part of the movie at all.

At one point I thought to myself... am I even here? do these ladies see me sitting here or am I dreaming this and watching them from the outside?

Eventually those odd feelings passed and I did not think too much of it. I assumed I was just tired and stressed because of the strain of travel.

When I was done at the office for the day, I headed back to the hotel. I decided to get room service so that I could just sit and relax on my own. A hotel staff person brought me a burger with fries and a coke. I sat on the bed and ate and watched TV.

At one point, I was watching the television show "Friends", and I felt my head suddenly drop. I snapped it back up again and thought it must have just been a fluke and I must have been more tired than I had originally thought. A few minutes later, the same thing happened. Uncontrollably, my head dropped and a few seconds passed in which I missed what was happening on the television. These moments happened off and on for several minutes.

By the time I realized that what was happening was not due to fatigue, I started feeling numbness in my arms and legs. I looked down at my legs but could not move them. They felt fat and heavy. I tried to move them but they just laid there. I then took my hands and tried to lift my legs. They felt "normal" to the touch, but on the inside they felt so heavy. Everything seemed to be so surreal again. It was at about this time that it dawned on me that what might be happening is that I was having an allergic reaction to the pills that the doctor had given me.

I walked into the bathroom, thinking that I would splash cold water on my face and feel better. When I looked in the mirror I looked so pasty and white. I had a sudden urge to go to the bathroom. When I sat on the toilet I could not feel my legs or behind. It seemed like a struggle to urinate, but once I did, I could hear the water trickle but I could not feel anything. I had no feeling at all from my waste down, and yet I could get up and walk.

My head began it's pattern of dropping again for a few seconds at a time. I started to panic and decided that I should try to get help. I knew the doctor's name and thought I could call him if I could find him in the phone book, dialing his home phone number.

When I pulled the phone book out of the bed stand drawer and opened it, all I saw was a bunch of letters all over the pages and out of order. The words were sometimes backwards or mixed up. The letters were not in the correct order. Everything seemed to be a big zig zag of text. I could not focus enough or control the text on the page to even read what was on the pages. This really frightened me, so I thought I should call for help. Maybe someone at the front desk of the hotel could come and be with me.

The phone was right next to me. I knew it was a phone, but I could not remember how to dial it. I stared at it trying to remember how to use it. It was so crazy. It made no sense to me.

I got up from the bed and decided to go to the front desk. My hotel room was literally a few doors down from the main lobby on the same floor. I remember opening the door to the hallway and seeing a hotel staff member. I told him that I needed help. The next thing I remember is laying on the floor in the doorway. I was face down on the carpet. I could hear someone on the phone in my room. It was the staff person talking to the 911 operator.

I was able to get up on my own, but felt very unstable. My face felt numb and I could not feel my lips. I was fighting off losing consciousness. It was an awful feeling. The hotel staff was being told to get me to sit down, but I didn't want to sit down because I was afraid I would fall asleep and not wake up. A few minutes later, several rescue workers came into the room. The emergency medical technicians made me sit in a chair. I was fighting to stay awake. I kept telling them that I thought I was having an allergic reaction and pointed to the drugs near the bed. Later in the ambulance, some new rookie tried to get Benadryl in me through an IV but was having issues with that. The more experienced medical tech eventually stuck a shot of Benadryl in the upper part of my left shoulder. Read more!