Holistic Approach to Health Care: My Health Journal

Below is an article sharing with you the first six months of my journey into the chaos of a chronic illness. I included the experiences I had with the doctors, my co-workers, my friends and my family. As well as the physical and emotional impact those first chaotic six months had on me.

I will follow with updates sharing my challenges, my personal growth and the changes I made to help support myself in the healing process during the next 5 1/2 years of my journey.

It all started one early morning in October 1999. Every morning at 3:30am, my running partner and I were up and ready to go to get our 5 mile run in before work. We were training for the Disney World Marathon so running every morning was a part of our routine as well as long runs, 15-21 miles on the weekends and weight training 3 times per week. Looking back on it, we did not think we were over doing it, we just went at it with a vengeance, loving every minute of it and thinking nothing of the stress and abuse we might be causing our bodies.

On this particular run we started out slightly sluggish from the early hour and the chill in the air. We found our rhythm half way through, but it wasn’t until I was on the last half mile and heading up a hill that I knew something was wrong, very wrong. Without warning, the right side of my body suddenly went weak and the left side of my face went numb. I stopped running and started walking thinking I could shake it off, but this was different and I knew something was seriously wrong.

Typical for me, though, I ignored the symptoms and continued to work at the same pace as usual. At the time, I was the Director for a new Information and Referral Center in Prescott, Arizona. It was hectic and we were trying to get money to keep our doors open so there was a lot of stress. But soon enough I was feeling exhausted and I could no longer feel the left side of my face. I was no longer training and my hopes of running the Disney World Marathon were fading fast. We were still planning on flying to Florida for the race just in case I could run after all and my family was scheduled to meet us there in support of me and of my training partner who was to run her first marathon.

In the meantime, we spent the Thanksgiving Holiday with friends about 1 ½ hours away from our home even though I was not feeling well and was starting to have really strange symptoms and just felt overall like I had a bad case of the flu. On the way home from our friends house, I started feeling really sick, I felt cold, numbness had now moved into my left eye, I was nauseous, dizzy and very weak.

Concerned and confused with these symptoms, we decided to stop at a 24 clinic just in case it was something that needed immediate attention. We waited at the clinic for about 2 hours before the doctor saw me and I sat there hoping that they could see me before it was too late. When the doctor finally came in, he asked me maybe three questions and said that he really didn’t know what was wrong with me which was not very comforting.

Somehow I managed to continue with my work and on January 31, 1999 I was on-call at the office to answer questions anyone in the community may have because of the concern over Y-2K. But by 6pm that day the left side of my face, neck and left arm were extremely numb and I was having pain in my left arm and chest. I called my partner to take me to the emergency room.

The emergency room staff was very nice and the doctor was quite thorough. No questions about my use of Listerine this time, instead he concentrated on making sure that I wasn’t dying and tried to determine the cause of my symptoms. He hypothesized that my symptoms could have been due to some type of Herpes-related virus from having chicken pox as a child. So then, my second official diagnosis at this point was “NEURITIS”. Armed with that information we just assumed all would be well.

By the time we made it to Florida I knew that there was no possibility of me running the marathon. In fact, it was time to get an MRI and see what was happening to me. I spent most of the trip curled up in a fetal position exhausted and in pain. We didn’t know what was happening to me. Being this ill and incapacitated was foreign to me since I have always been a strong, healthy and active person. I have always been able to bounce back or work my way through any crisis, but this was like trying to get through quick sand, the harder you tried to help yourself the worse things got.

By now I was experiencing an array of strange and bizarre symptoms, from difficulty with my gait, dizziness, numbness, blurred vision, headaches, fatigue, nausea and pain in my muscles and nerves, to feeling like my legs weighed a thousand pounds and carrying them around took every bit of energy I had. But the MRI didn’t show anything unusual except a very expensive bill which my insurance didn’t cover!

Not until years later did I realize that this was to be the start of a very long and painful journey, physically, emotionally and financially!!

When we returned from Florida, I called a meeting with my Board of Directors and told them I was having health concerns and would only be able to work half days from home. But even this shortened work schedule took every bit of energy I had. And everyday I felt myself getting weaker and weaker until I finally reached a point in April when I knew I could no longer continue working. Leaving my job was one of the hardest decisions I have ever made. For me to quit a project that we had put so much time and energy into was devastating, but I had no choice.

I had no idea how I would make it financially without my salary and I didn’t know which way to turn when it came to my health. I had seen my general physician and she ran all the basic tests. She was thorough and made a great effort to help find an answer for me. She referred me to various specialists and ran any test that I thought might help. But, truthfully, she was not able to handle a case as complex as mine. Although she did provide me with a possible diagnosis, so my third official diagnosis was now “POSSIBLE LYME DISEASE”.

I had not let my parents know the extent of my illness thus far but, I finally called them and asked them to come out and help me maneuver through the medical system and help me at the house since I could no longer take care of myself at any level. I could no longer work, clean or maintain much of anything. And I found that trying to work my way through the medical system was a full time job!

Our life was turning into a nightmare fast! I was grateful that my parents came out, but the feeling as a 32-year-old independent woman to have to have your parents “rescue” you had its own emotional impact for me. At the time I got sick we were living in a very rural part of Arizona with very low paying jobs. My partner and I worked in the Social Services with its traditional low income salaries; therefore, once I left my job we couldn’t afford our home, car or even my health insurance. It was a difficult situation at best and we had to start thinking of a plan to deal with my health, our finances and our future.

A health crisis of this nature happens so fast and you really don’t believe it is happening, you refuse to accept the reality you are facing and you continue with that feeling of false confidence that tells you that you can pull yourself out of this spiral, but the truth was that our world was out of control and we were on the fast track to losing everything we had! Once I finally communicated to my parents the actual state of my health and finances they immediately stepped in and took control of my medical and financial situation. I often wonder now what other people would do in a situation such as mine if they don’t have a strong support system. How do they cope?

In order to better understand my illness, my mom actually followed me around and documented every move I made, every symptom I experienced. She documented all the medication I had been taking, collected all the medical records from the doctors I had seen and spent hours on the internet researching to try and figure out what was happening to me. My father handled the finances and, practically every day, drove me to an endless list of doctors’ appointments and to get lab work done. My older sister researched doctors at Hopkins in Maryland and did a lot of research on the Internet looking for answers and my second sister offered some financial assistance. Again, without this kind of support I don’t think I would have been able to keep track of my illness and survive the crisis I was in.

Meanwhile I was still living in this fantasy world that if I ate right, put all my energy into thinking positive, by meditating, praying and trying to move my body I could heal myself! I have always believed firmly that we can heal ourselves, but let me tell you how let down I was when my body didn’t heal in the first year. It was tough to accept that one of my core beliefs had been found to be false I was devastated! The truth is that even though my physical symptoms were awful and almost unbearable, the emotional experience of losing control of my life, having core beliefs altered, feeling like I was losing my identity and having to depend on others for everything turned out to be the hardest part of my experience.

And while all this was happening my partner was also firmly set in denial with the full determination and belief that it would all just go away! This state of affairs, this denial of our reality, made it really difficult to make any realistic decisions. What needed to happen was that my partner somehow needed to take the bull by the horns and lead our lives, which was not the norm for us. I remember we took a short walk one evening and I said that we were going to have to move to Maryland to be close to John’s Hopkins and that we had to start looking for new job prospects. The first response I got was an emphatic NO. Fear had taken over, paralysis had set in, and my partner was like a frightened animal with the belief that standing still, not moving forward, maybe would make it all just go away. But this wasn’t going away. After a couple of hours of debate, reality set in and we decided that I would fly to Maryland to see a doctor at Hopkins and that we would consider the next steps after the appointment.

At the same time, my parents continued to take me to a network of doctors in Arizona. I saw a neurologist, who offered a fourth possible diagnosis of “FIBROMYALGIA,” a rheumatologist who suggested a fifth possible diagnosis of “ARTHRITIS”, a toxicologist who suggested a sixth possible diagnosis of “CHRONIC FATIGUE SYNDROME” and an endless list of specialists all of whom had no idea what was wrong with me and could only come up with possible diagnosis. I clearly remember that, about 4 months into this process, I met with one of my previous board members, someone I really respected and enjoyed, and she said that it was highly unusual for someone not to have a diagnosis at this point and she asked me if I had considered seeing a psychiatrist! I was devastated, hurt and angry! And she was not the only one with this recommendation; one doctor also expressed this opinion. So, my seventh suggested diagnosis was now “PSYCHIATRIC PROBLEMS”

The truth is that most of us expect to go to a doctor, present our problem and get a resolution fairly quickly. And I truly believe that for most minor or common health issues that is probably the case. But, I learned very quickly that when dealing with a more complex situation, tragically, there are cases where patients may go for years, and I mean years, without being diagnosed. It is not as cut and dry as we assume for doctors to diagnose an illness and it is painful to have friends and family start to doubt you because of a general ignorance about the medical system. Not having an acceptable diagnosis, being doubted by friends, family and even doctors, was more painful than the disorder itself. The emotional hurtles I had to overcome in addition to my illness not only caused me great distress, but also exacerbated my symptoms.

At the same time I found that many people in my life just kind of fell to the wayside. They just stopped calling, maybe it was because we were pushing them away or they didn’t really want to have to deal with a sick friend, but regardless of the reason, it still hurts today that my friends were not there to support me. This was just another emotional toll that I had to deal with.

And there were painful misunderstandings. One of the most difficult experiences for me at the time was dealing with other people’s expectations. Because I needed to spend all my energies focusing on my health, I told my board president that I would prefer not dealing with a particular person on the board because of his inability to set boundaries and I did not have the energy to handle him. Somehow, this was misunderstood and the board in general was told not to contact me. I then received a letter from one of the board members admonishing me and practically demanding that my partner update the board on a regular basis on the state of my health. My first thought was one of total confusion, why would anybody put expectations on someone who is dealing with a health crisis? It seemed unrealistic to expect my partner to do anything except to try and deal with the crisis at hand. Additionally, my partner had fallen into a depression and our world was spinning out of control so any kind of demand on us was an added burden. It was interesting to see how some people were offended that I didn’t meet their expectations or needs at a time when I needed understanding and support. It was as if I was offending people for not responding to their needs. This was quite a learning experience for me. There is an emotional fragility that seems to set in when one is dealing with a situation such as mine and I found out that not everyone is equipped with the maturity and understanding to deal with it in a supportive way.

On the other hand, I do have to give credit where credit is due. There were indeed several loyal people that called on a regular basis and placed no expectations on me and for that I am so, so grateful! It restored my faith in humanity and somehow consoled me. They are still in my life today.

While continuing to see traditional doctors, I paralleled that effort with alternative doctors. I had seen a Naturopath on and off for the past few years and wanted to see if she had any thoughts about what might be happening. After a thorough examination and some basic tests, she could not determine anything significant although she suggested an eighth possible diagnosis of “BELL’S PALSY.” She felt certain it was of utmost importance that I supplement my diet with vitamins and herbs to support my system in healing itself. This was the beginning of another long journey investigating alternative medicine.

By this time, I had taken various pain medications, antibiotics and every supplement under sun as well as tried physical therapy all with very little results. My parents were leaving no stone unturned. They even wrote a letter and sent all my medical records to an infectious disease specialist in Maryland to see if he could offer any suggestions. After reviewing my records, he suggested a ninth possible diagnosis of “UNUSUAL ILLNESS DUE TO HERPES SIMPLEX VIRUS, CHRONIC FATIGUE SYNDROME OR SICK BUILDING SYNDROME”. He recommended a course of Acyclovir anti-viral therapy, which I tried to no avail. Oddly enough at the same time the allergy symptoms I had been experiencing for a couple of years became unusual, they increased in intensity and just went haywire. I was sneezing every second and could barely breathe. It seemed like my entire system was breaking down. Thankfully, we somehow found an alternative nutritionist in Washington State who suggested I eliminate just about every food I ate and it seemed like overnight my allergies were gone. At least we had one thing under control! Oh, by the way his official diagnosis and my tenth diagnosis was “INABILITY TO PROPERLY ASSIMILATE AND ABSORB PROTEIN.”

Check back in the near future for the next 6 months of my journey. In the mean time you may want to check out my Alternative Medicine page where I share some of the Alternative techniques that I have tried along the way. I got pretty desperate! Alternative Medicine

I would love to hear about your personal health story. Click on the link below to share your story and I will publish it on my websiteYour Health Story


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"I recommend this e-book highly as a must read for any person considering applying for Social Security Disability Benefits." Bill Wallmuller Managing-My-Fibromyalgia.com

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