Scents in the City

As I walked through the streets that beautiful late winter day in Portland’s Belmont District, I had a strange sense of sadness come over me. Why I wondered? Why would I feel melancholy in an area that always had made me feel at home? There are many nice areas in Portland, but this one and Hawthorne are amongst my favorites. I can visit those areas mentally and literally almost re-experience certain days I spent there and how I felt during many different times over the years. It is hard to explain, but it is a strong feeling, and although mental, produces physical sensations I can’t describe. I feel like I am there physically to some degree. With the fond memories, I tried to figure out why this was happening.

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I was out of the house and walking, which for me, is a huge thing. Physically, I wasn’t that tired or in excessive pain. My kids and husband, Barry, were with me. I made a mental note of those things, taking time to appreciate all of the good things that were happening. The absence of many symptoms I have experienced, even if it is one day, is not something to overlook.

I looked through the window of a restaurant. I don’t remember the restaurant, but two people were inside having some sort of pastries or bread. I had gone to many places in the different districts of Portland and enjoyed lunches and dinners with Barry over the years mostly before I had kids. Intoxicating aromas filled the air. I smelled pizza and saw places I had dreamed of taking our children. That would not be happening. The scent of the air was an invitation to all to come in and have a slice of pizza and any number of other things. It wasn’t a single scent or restaurant either. It was the combination of scents and sights that collectively took their toll on me. I was hungry, but more than hunger, very sad that I could not take the kids today nor on any day to eat in my favorite spots in the city.

To watch others come and go, eat, and converse for their enjoyable, unrestricted outing was very difficult. I have to admit that part of me felt angry that not much notice is taken of those who cannot eat foods due to allergies. Even in Portland, there isn’t much selection for those that have to avoid cross-contamination in food. There are three gluten free bakeries and one expensive family-style restaurant. It is socially isolating and exclusive.

Those that have dietary limitations or hidden illnesses usually understand the feelings brought on by not being able to interact with society, but not everyone else does. I wish I could say that people very close to me understood the challenges we are facing. Many don’t even take it seriously, and some have actually been openly disrespectful or talked behind closed doors. This has compounded the sadness exponentially.

Writing this doesn’t change what my family and I are experiencing, but I hope it helps show those that might not relate some of the limitations and pain. In addition to the added expenses of my illnesses, there is insult added to injury when a mom and dad realize they did not get to share certain things with their children not just for one day but ever.

To help our family, please donate a buck or two here or share this blog or story with social media. You can also help by donating for a piece of pottery. Proceeds will go to treatment. With pieces relating to Civil Rights, my plan is a small donation per purchase on those items. The close to the suggested donation, the more love to spread around.

Here is the link to a more in depth writing about my illness and the place to donate directly: https://www.youcaring.com/medical-fundraiser/cheryl-s-medical-fund/40186

An Alternative for the Underinsured and Insured

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The word gluten intolerance is something I have heard thrown about mostly by the public and certain health care professionals, namely chiropractors and naturopaths. It was usually the first thing out of their mouths once they saw me and couldn’t give me any answers. The problem with their suggestion was that they never really gave me any ideas on how to put this diet into effect or reasons wheat gluten might be causing issues in the human body or my body in particular. In fact, in most cases, I think it was just something they threw out there without giving it or my condition much thought. I would have used any avenue necessary to explain why gluten and other foods can and are presenting major issues in today’s world. In fact, I try to explain to people about what appears to be happening all of the time with regard to certain foods in the diet.

The word Celiac disease was something I also heard uttered here and there. I do remember exactly where I was when I heard the first story about someone suffering from it. I was talking with my realtor about her nephew, who had a strict diet, out by the hot tub that is no longer there in the backyard of my current home. I remember the story, because the mom was preparing two meals every time she cooked. My realtor told her sister that maybe she should just switch to her son’s diet for ease. My mind strayed as I listened to the multi-faceted story, one I won’t fully explain here. I thought about how difficult it would be to switch to a diet without wheat. As a child, I suppose it wouldn’t be as hard if that were always your diet. Even then, a special diet means you can’t just go to the store and get many of the things one is accustomed to purchasing. And going out to eat is virtually impossible with real fears of cross contamination. Even if cooking from scratch, many things are out that consumers don’t even think about on a daily basis. As I considered this, it seemed it would be easier for a meat eater and milk consumer to pull this off. I was fully vegan, didn’t have cheese in my diet, didn’t drink milk, and I ate no animal flesh. Such a diet change had been brought up at some point, and I thought I tried, but it is funny to me now when I think of that attempt at dietary modification.

I researched about it on the Internet before making changes, so I thought. I don’t know exactly when this was but it was between 2005 and 2007. The years have blended together while my illness went through a strange metamorphosis. After this confusing attempt to get information online, I decided to try spelt. I had read it was an ancient grain that gave people less problems then wheat. The thing is that it contains gluten and is related to wheat. It isn’t appropriate for Celiac patients or those with wheat gluten intolerance. It is almost embarrassing to write down, but it shows the intricate nature of locating consistent and clear information and making sensible decisions based on it. In addition to choosing something that made no sense, I never really outed all of the rest of the problematic products that contained traditional wheat gluten. While bread wasn’t big on my list, processed foods were. Most processed foods contain wheat, but that is not the only thing that is problematic in processed foods. There are cheap oils passed off as healthy, bad sugars like sucrose and high fructose corn syrup, genetically modified organisms, and many others. To get back on point, I really didn’t find out until much later, that I had never even reduced gluten by this attempt.

It was 2007 when I went to see an “holistic M.D.” I had to put it in quotes, because she represents a typical doctor except her treatments were random, expensive supplements. There was not much science behind the way she practiced medicine. Plus, while she took my Medicare, everything she sold at each visit cost hundreds and she asked me right away how I planned to get treatment from her without money. She was right, because effectively, I couldn’t get help from her because I was poor. I stayed anyway, because I had strange symptoms and I thought maybe she was different at first. Perhaps she would be the genius doctor I had been on a quest for over the years, like the one from the television show, House, M.D. Not! At least with Dr. Gregory House from television, I would be able sit and watch his interesting relationships with people like Dr. Wilson while he attempted to use his fascinating fictional mind to try to fix me. Then, the abuse might seem worth it. Plus, for anyone that has watched this show, he always figured out the mystery the third time around. Well, for the most part. This way, I would know how it was going to end, greatly reducing the upset that might be caused by his unusual techniques as a real TV physician. My doctor, and I will call her “Dr. Teal,” was the opposite of my favorite doctor on TV, except for her bedside manner. She ran all sorts of blood tests, which came back normal except vitamin D. Then, she did some basic tests. Based on those two things, she told me I needed large doses of vitamin B-12 injected and a whole lot of other supplements. She said even if the tests were normal, supplementation often helped individuals with symptoms of B-12 deficiency. I had some evidence of carpal tunnel with a basic test where the patient holds up the arms in a certain position for a short time (seems long) to check for a nerve sensations. I didn’t have much, but she saw what she wanted. Not being able to afford either injections or the supplements, I thought I could use something at home or use foods. She said there was no way. I bought some things she recommended, like Vitamin D3, because I was very deficient and a few other supplements. Nothing really helped and some made me feel worse right away. I had gone in because of years of pain, daily sweating with no explanation (often with chills), and continuing issues since I lost my thyroid and uterus. She brought up a gluten free diet. Knowing I was vegan in part for spiritual reasons, she seemed oblivious to what those things meant. I asked her what I would eat. She said I could have all of the fruits, veggies, dairy, eggs, and meat I wanted. Here was the problem. I didn’t eat meat or eggs. This left a large protein problem. Beans weren’t something I ate very well. In fact, my diet simply lacked for some unknown reason my whole life. I knew I wasn’t going to be able to go gluten free and I felt desperate. I reminded her of my lack of meat in the diet. She told me I could have all the soy I wanted. That is really something else, coming from someone that puts herself out there as a natural health care provider. Soy, in my view and from my investigation, is an endocrine disrupter and one I no longer will consume. It isn’t just that information, but I think of the evil corporation Montsanto when I see or hear about most soy products. I feel it contributed to my problem and could be one reason my thyroid completely went out of whack.

I must say that Dr. House would have agreed with me, and while Dr. Teal ordered tests, Dr. House would have concurred with me if he were a real doctor. He likely would have run tests I had pushed for over the years before I even mentioned them. I have no shame in admitting this freely: many of my thoughts about my illness were supported by this show and his ideas on some of his fake patients. I quit watching the show due to this, thinking I was getting too upset with the subject matter. I had hoped that it wouldn’t be autoimmune but I ended up being right. Apparently, my favorite show had come closer to a diagnosis than any doctor I had seen over the years. Dr. House had been on the right track without ever meeting me, but I wouldn’t find out he particulars of my autoimmune illnesses for about a year after I stopped watching the show.

It was only after my visit to the Hai Shan Clinic that I understood the situation more clearly. Two other doctors helped shed light on my issues as well. The gluten diet I had tried and failed with before was a success with the guidance of my alternative doctors. It is and has been a rough road, but it is a lot rougher when you are trying figure out what’s wrong and how to treat it with no assistance.

A Prelude to a Post

I went to the Anne Frank exhibit years ago in Portland, Oregon, where I first saw this poem.  I put it on my refrigerator at the time.  Over the years, it keeps entering my mind.  This is a very important message and one most don’t understand until it is their turn.
 
Martin Niemöller spent the last seven years of Nazi rule in concentration camps.  According to to the Martin-Niemöller-Foundation the text of his poem is as follows:

According to the Martin-Niemöller-Foundation the text is as follows.

“First they came for the communists,
and I didn’t speak out because I wasn’t a communist.

Then they came for the socialists,
and I didn’t speak out because I wasn’t a socialist.

Then they came for the trade unionists,
and I didn’t speak out because I wasn’t a trade unionist.

Then they came for me,
and there was no one left to speak for me.”

 

Hai Shan Clinic, the letters M and W, and Fundraising…

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I have a small set of metal letters I purchased for use in pottery. Using the W, an M can be made by turning the metal letter 180 degrees. In this sense, these letters are truly opposite. Okay, not all Ms are opposites of Ws. Still…close enough right? By this point, you are likely wondering, “What do these letters have to do with an appointment at the Hai Shan Clinic or fundraising?” You’ll see!

I have to be honest that I did not want to go to my last appointment at the Hai Shan Clinic. I had some nausea and difficulty eating the night before. Plus, I am taking a new medication called low dose naltrexone and was afraid that it might be contraindicated with some of the Chinese herbs. I worried that it might be seen as a bandaid, one that would obscure whether or not I was actually responding to treatment I have been receiving.

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The long drive to this clinic on winding roads to upper elevations in my current state was not appealing. It is a beautiful, scenic ride with a lot of twists and turns, and a scary descent at the end as we reach the destination. In my state of mind, that did not sound appealing. It feels a little like being on a carnival ride at the end that probably would be an adrenaline rush to many people. We arrived early that day, walked around a little, and then went into the comfortable office to wait for Dr. M. Dr. M is a licensed acupuncturist, a naturopathic physician, has bachelor’s degree in chemical engineering and a Masters of Science in Oriental Medicine. More importantly, Dr. M is a kind, competent, patient physician that is constantly seeking information. His knowledge is evolving, rather than static. This is the best kind of doctor.

He came out shortly and called me in. He is a good listener, and I am talkative, so that is a good thing. He asked how I was. Mumbling a little, I said, “I have had better days.” Initially, he thought I said things had been better. I clarified that I have had better days than I was having at the moment mixed with some good days. Reassuring me, he said, “Let’s see what we can do to make things better.” He seemed attuned to my issues, asking if I was having palpitations and congestion. He asked about my pain and noticed my lower energy level, examined my tongue, and used “pulse” diagnosis.

This inquiry caused me to look back to when I first came to the clinic in the fall of 2011. I recalled that I had worried about making it from my car into the clinic. It is not even ground, there are steps made of landscape rocks, and my body and feet were in agonizing pain. Walking on this surface was challenging for me on my first visit. I did not have a wheelchair yet, and it would not have gotten me over the modest steps. A clinic where most take off their shoes at the front entrance, I had reluctantly asked if I could leave mine on due to pain. On the drive to the clinic that first time, I couldn’t even appreciate the beauty of the area, because I was “caged in pain” and consequently, not mindful of the scenery.

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I explained to Dr. M that I was aware of how much improvement had occurred since I first came there, mentioning that I had gone off pain medication fully. He was pleasantly surprised and he let me know that I had achieved a lot outing that medicine. As time passes, we tend to forget improvements, but it is hard to forget the misery I have experienced over the years. However, since my treatment begin, a lowered pain level became the “norm.” It is this benchmark that I use to measure how I feel on a daily basis. Since my last visit, my pain level was higher when looking at this new baseline.

There is a diagnostic machine used in this practice to check for allergies, how remedies work with the body, and to test medications, foods (amongst other things) to see if they are beneficial or not. It is used along with clinical skills in treating a patient. I had brought my low dose naltrexone and asked him to test it. I added that I was not going to say what it was and wouldn’t discontinue it regardless of the outcome. He seemed to like this challenge, asking me not to tell him. He concluded that it was not harmful. I was relieved to hear this news, because I didn’t want to hear anything negative. Then, I told him it was low dose naltrexone. Contrary to what I thought, he was pleased that I was trying it, seemed excited to watch as I continued, and he was familiar with it. We freely exchanged what we knew about it, something I can rarely do with “regular doctors,” and he concluded it was a good idea to use it.

Eating has always been a challenge for me, and I have been experiencing some issues recently particularly as I continue my journey with dietary restrictions and learn about eating to ease the symptoms of autoimmune disease. At this point, my diet is free from wheat gluten, corn, soy, dairy, and refined sugars. Artificial sugars and cheap oils are also excluded. I have heard about a lot of diets, but the words “Paleo diet” and grain free diet are the two things I have heard about the most lately. When hearing about these diets, I usually am told that our “ancestors” ate in this fashion, particularly with the Paleo diet. The conclusion is that if we follow suit with this diet, our health will improve. Since embarking on big dietary changes, I will not dismiss information that could make me well even if it is uncomfortable to hear. As I talked to Dr. M, I wanted to find out what he thought about grain free diets and gliadin, a protein found in all grains.

I explained that I had tested positive for one genetic marker of Celiac disease, DQ8, and Dr. M asked when I found out. He was not aware of that information, because I had seen his colleague when I gave the results. Dr. M found it in the chart. I also explained that another issue had been found in my blood, IgA deficiency, which had complicated reading the typical antibody tests for Celiac. At this point, I told him about the grain free diet. I voiced my frustration with those that suggest we follow the diet of our ancestors, because I have to wonder a few things. Which ancestors shall we choose to emulate? More importantly, how do we know their lives were so healthy anyway? I noticed a smile on Dr. M’s face during this discussion.

Then, I inquired as to whether or not other grains could be an issue for me. Usually content, he looked concerned that I might eliminate other grains, noting my weight and commenting that this would lower caloric intake. We discussed gliadin, and he listened as I explained that my research had revealed that the gliadin in rice and corn, were not the same as in wheat, barley, and rye. Again, most doctors wouldn’t even care about my thoughts, and I know this from experience. He treated me as a partner in healthcare, valued my thoughts, and considered the information. It was refreshing to converse openly with a doctor that was willing to look at things objectively and not act like he “knew it all.” After careful consideration, the conclusion was that outing other grains not specifically containing wheat gluten was not a good idea.

With careful attention to detail and clinical assessment, he methodically chose the next herbs and supplements I would use next. He took the time to explain to me about treatment with herbs, noting that while still medication, it was simply closer to the original plant source than traditional pharmaceuticals.  Dr. M and I talked about many other topics, and unlike Dr. W, he was familiar with everything I asked about.  We discussed a complex genetic mutation, the MTHFR mutation, the benefits of magnesium glycinate to the nervous system, and magnesium stearate.  Not surprisingly, he knew this was a lubricant used during encapsulation of supplements to prevent ingredients from sticking to the equipment.  This allows for rapid and easier manufacturing, but not without potentially harmful effects.

Our dialogue opened the door to examining my strange folic acid and vitamin b12 lab results, something that has been dismissed by many doctors, including Dr. W.  He provided information to help me choose and take b vitamins properly, explaining that anemia can occur if methyl b12 and folate aren’t taken together.  As much as I have written, I could write more about the informative nature of this appointment. This had been a pleasant visit, and Dr. M left me with encouraging words. We talked about my fundraising and blogging. He even supported my fundraiser, showing an interest. Then, he said something very kind and encouraging. He said, “You should have a blog. You’re an artist.” I responded, “I do.” Then he said, “I know you do and I want to reinforce that.” A potter himself, I took this as a high compliment, even with my low self-esteem. This provided a sense of hope, especially because much of my life has been filled with criticism.

Late 2011 and early 2012 had brought new diagnoses to my life. My eye doctor, a good Dr. W, discovered Sjogren’s syndrome, giving me some recognition of the obvious misery and illness others had looked away from. Shortly thereafter, another provider, who shares my first name, diagnosed secondary adrenal insufficiency and later talked with me about the bloodwork revealing I tested positive for Celiac genetically. She had not believed the genetic test would come back positive.

I have had many medical doctors, but I want to discuss one doctor in particular, Dr. W (the negative and dismissive one). Rather than discussing any particular appointment with her, I think it is best to expose her modus operandi, or method of operation. I will do this by talking about my experiences with her at different appointments.

It is hard to distinguish one visit from the next when I go here, because the appointments have a rigid structure. Patients can count on Dr. W’s tardiness. On one occasion, I waited one and a half hours with two or three other patients behind me while the secretary slept. Then, the doctor acted shocked and unethically confided in me, placing blame on the ill secretary while revealing her employee’s personal issues. I felt Dr. W was responsible and thought a clock or hourglass would suffice to solve the issue. Despite being this behind, even if a patient contracted the plague, this doctor would fully expect him or her to show up or be charged. This is from a doctor that is minimally 15 minutes behind at all visits. She can be heard joking and talking while your time and life are disregarded.

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Once called back into the dungeon of an office, she sits down looking less than interested in seeing me. Paradoxically, she sees herself as instrumental to the care of patients, having an inflated sense of self. At each visit, Dr. W takes notes on a sheet of paper with two holes punched allowing it to be added into the chart. She asks me to tell her what medications I am on, even though the list is practically a carbon copy of the medications noted on the identical form from the former visit. I have told her that nothing has changed more times than I care to mention. Like an ant that is following a trail to nowhere, she goes though the motions. It would be more efficient to go through what you have written down from the previous visit, take a photocopy, and note any changes. Plus, it would keep her more on schedule. Some of this behavior is done in an attempt to spend the mandatory time for insurance billing. Once, when I could barely sit up in a chair, she kept me there an extra half hour, and I believe, this was because her other patient did not show. This permitted her to make a little more money.

A stark contrast to Dr. M’s approach, Dr. W has a condescending, inattentive demeanor. She makes downright rude statements often accompanied by inappropriate facial expressions and gesturing. I have witnessed her mistreatment of other patients firsthand, and she has gossiped about patients to me, which is totally unethical. Her office is a “sterile” one, and most patients would go running from it if it weren’t for their bad insurance. I fall into this category and obtaining quality treatment is a challenge.

I detest going to the insensitive confines of her office, but I still go, like a lamb off to the slaughter. I saw her about 3 months after my diagnoses, and despite the news of autoimmune issues, I had a more hopeful outlook. I wanted to return to school at some point and told her this. I thought I needed her to sign paperwork, because I had been declared “totally and permanently disabled” in 1995 and a small student loan was written off due to my fibromyalgia. I filled her in on my diagnoses since she asked how things had been. Near the end of my special time with her, I opted to ask about returning to school in the future. Her response was shocking, demoralizing, and sucked the hope right out of me. She told me there was no point in returning to school, adding that with my illnesses, the diagnoses would keep coming in, and things would get worse and worse. The basic message was, “It is all down hill from here.” After conveying that message, she handed me a prescription for a large amount of medication without a thought. I was despondent, and what she did not know, is that I had considered “end of life” decisions just months prior to this. I had crawled out of a deep hole of despair, and she instantly crushed my newly found hope. In this state, I momentarily considered that perhaps she was giving me this prescription to end the misery. Luckily, I had Dr. M, and three other providers to offset this negative and horrific treatment. Without that, I am not certain what might have happened.

When I have discussed severe sleep, weight, and pain issues, she showed no signs of concern. At my last meeting with her, I brought up low dose naltrexone and that I was no longer on opiates. Voluntarily coming off of opiates after over 10 years and when one is struggling was a tough journey, and I feel a good doctor would take special notice of that accomplishment. She said nothing in response to my news and just wrote it down on auto pilot. With regard to low dose naltrexone, she asked me why they would put me on that after I came off opiates. She was not familiar with it as a medication and seemed to put it in the same category as an opiate. I would think she might know the medicine, because naltrexone has been around a long time and she is an M.D. after all.

I have discussed the fact that my vitamin b 12 and folate were high, hoping that she might shed light on this in the past. She never so much as took an educated guess, and that is what the scientific method is based on. If a doctor doesn’t know something, he or she should be inquisitive and refrain from making conclusions without research. It is okay to not know something even for a doctor. This makes me think of the work of Socrates. He had an awareness that he did not possess certain knowledge, and he did not pretend to know more than he did. He concluded that this is why the oracle had said he was the wisest. That was his wisdom…that awareness.

LETTERS

Now, I have to discuss letters again. Society has the utmost respect for the letters M.D. Other letters along with these two help to heighten a provider’s societal status, but the letters M and D side by side bring with them one of the highest levels of prestige. Only Ph and D bring more to the mix in my opinion. Sure, society is evolving and in certain circles, the disciplines of naturopathy, Classical Chinese medicine, acupuncture, and even knowledge attained at “lower levels” of schooling are highly regarded and gaining respect.

As I wrote about my experiences with these two doctors, I could see that Dr. M has way more knowledge than Dr. W, and Dr. M conducts himself in a professional, polite, compassionate, and dedicated manner. For many, the multitude of letters after his name do not begin to compare to Dr. W’s, M and D. I have heard and seen the skepticism toward my treatment. One person in my family, who taught medical students and nurses, has mocked my treatment.

As pointed out above, Dr. W is able to work the system of our insurance industry without question. My insurance does not pay for any alternative services even if they work. Gobs of money can be and has been poured down the drain on useless treatments wasting countless years stalling diagnosis. This is what brought me to the public to raise funds for treatment. In order to get well, I need to see doctors that “think outside the box.” Even the M.D.s that lean this way propose treatments that are not covered by my insurance or they usually don’t take my insurance. Effectively, I have no other choice than to ask for help in order to save myself and my family.

It is important to note that there are many people with high degrees that are not like Dr. W. Dr. M certainly has a high level of education as I described above. There is nothing shabby about having BS, ND, MSOM, and LAc after a provider’s name. The clinic founder and director holds a PhD and is highly trained and educated. I want to emphasize, however, that I do not believe degrees make a provider what he or she is. It is what a person does with the information they are taught in whatever discipline that helps him or her to provide help to patient. Interdisciplinary teams benefit by having members from all walks of life, degree or not.

Here is my thought though, I had not gotten anywhere in years with traditional medicine. In a few short months after seeing Dr. M at the clinic, I was getting out of my house, more functional at home, and riding a bike by the following spring. That speaks volumes about Dr. M compared to Dr. W. Like the metal letter, these doctors are polar opposites in their approaches and knowledge. Not only is  M not less than W, but M > W for sure. Unlike a math or logic problem, where I would have to write out all my steps in order to come to show the end result, it was pure observation and analysis that led me to my conclusion this time.

When a person has been ill as long as I have and has many recalcitrant autoimmune diseases, the importance of having a good doctor cannot be overstated.  While asking for help with fundraising is hard to do, it is a crucial step attaining care that should be available to any patient enduring a tough battle.  Please donate if you can, using the donate button on this site or the Youcaring link here:  http://www.youcaring.com/medical-fundraiser/cheryl-s-medical-fund/40186

M>W

Down and Out by the Portland Art Museum

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PAMentrance

Most parents look forward to outings with their kids as often as they can get it. Long before I had my kids, I dreamed of walking in many neat areas to expose them to the world and the places I enjoyed. In the case of our family, we have not been able to interact with society in the same way that others do for years on end. My chronic, debilitating illness has been the major reason for this social isolation.

It was February 16, 2013, and a friend of mine was coming to Portland to celebrate his wedding anniversary. Exciting for me, but also coupled with some socialized anxiety from being caged over the years, I looked forward to a visit. I longed to enjoy time with fellow artists, to work on a pottery project, and to see some of the outside world with my new friends, Greg and Kathryn. I thought this would be awesome for Barry and the kids also. Unfortunately, I became ill with something in addition to my autoimmune issues in the week prior to their arrival. This threw a wrench into things for me, because my physical state prevented me from focusing as well during the part of the visit relating to pottery. I felt like I was going in slow motion, while the everything around me was moving at an accelerated speed. It is sort of like one might feel if they were moving slowly in a movie being fast forwarded for effect. This led me to conclude, whether right or not, that I was perhaps not capable of doing pottery like many, and it really affected that Saturday especially as the end of the day approached. Greg wrote me from where they were staying and said he and Kathryn wanted to take us out to the Portland Art Museum on Sunday. I thought about it, and decided I would see how the night went and decide in the morning if I could sleep and wake up early enough.

As night approached, I became very scared. With all of the diagnoses, and the inability to fully grasp them, fear infiltrates my mind easily. Fibromyalgia was enough. Then came Sjogren’s syndrome. . . secondary adrenal insufficiency. . . a positive genetic test for Celiac disease. . . the strange IgA deficiency, and then some.

Frantic, I finally fell to pieces talking to my husband, Barry, about my feelings. I explained that I was afraid I was going to die from starvation.  I talked about how all of the food had to be prepared and how I felt chained to the house. I discussed natural disasters and even storms, mentioning that I would not be able to eat the foods other people could. I recounted the 2008-9 winter storm that left us stranded. That was bad, but I could eat the crap up at the local store. I did not know any better about the effect certain foods were having on my health. This scenario would not be an option today, as it would lead to massively debilitating circumstances. I also could not help but think about my medications. If anything should prevent me from getting them, I would become very ill. The fact is a couple of my medications can result in seizures or severe side effects if abruptly stopped—a life threatening situation is realistic. With the car having had a few issues, I was uneasy about driving even with others in the car. The risks of being stranded without food, enough medications, and struggling with potential symptoms from my illnesses seemed like real risks to me. I do not feel many others can understand this. I was so upset that I was literally sobbing. I felt I would not likely make it on the planned outing the next day. It was past 4 am. I was already fighting a bug, and it seemed like between the concerns and my overall state, it wasn’t going to happen.

We woke up around 10:00 to 10:30 in the morning. I got ready and sent Greg a text message to say we were coming. We had something to eat. I figured, “To heck with this worry!” I decided I needed to quit worrying about things that might happen. I felt okay despite the night before. I was happy to have a surprise for the kids and felt good I had not had to let them or myself down. This would be a simple two-hour adventure and did not require a lot of preparation, because we would be home in a few hours. There was no need to pack a lot of food or take emergency medications along. All that was necessary was having “faith” that things would be okay.

As we made our way across the Morrison Bridge toward our destination, I thought about the car. We had been hit with transmission and severe tire issues that had caused financial distress in the previous two years. Things seemed to keep happening. While driving, I contemplated the intricate nature of our highway and road system, how complex its infrastructure is, and how everyone just takes it for granted that it is safe and will work. Even I had a sense of trust, other than a small burst of anxiety which was a result of being overwhelmed at the complexity of life and the lack of connectivity the nuclear family has created.

We were even ahead of schedule, and I thought we would make it early. That did not happen but we were on time. I parked and realized I had to back up a little. I was not properly parked. I turned the key. Nothing at all but clicking. I shut the ignition off and was instantly concerned. I verbalized this in a somewhat anxious manner. Then, I tried to start the car again. Nothing. And again. Nothing. By this point, I was freaked out. Barry looked discontented too, which was not a good sign. If he is not too worried, his facial expression does not look the way it did.

Shortly thereafter, a man parked in front of us. In an obligatory manner, he asked us what was wrong and informed us that his battery was under his seat, which would make it difficult to help us. I was confused by this comment, but had no time to assess it, as he nonchalantly walked away bidding us good luck. Frantically, I called Greg and told him our car was not starting. We agreed, I thought, to meet in the front of the museum and decide what to do. I wanted to try to jump start the car right away. I knew we might get stuck at a later time if we waited. A large “cloud” was looming above us as we approached the museum.

Upon arriving at the main entrance, I scanned the area to see if I could spot Greg. I looked up and saw a man standing fairly close to us. He was an attractive man, and he smiled as he looked our way. I smiled back just as I do to most people, when I realized that he was not well. He looked at me and my daughter, began laughing, and I instinctively felt protective and vulnerable. I knew he was likely harmless. He walked away, and as he did, I wondered where he would go, where he slept at night, and whether any one noticed his deplorable circumstances. This affected me, instantly leading to sadness mixed with fear.

Statue-museum

Then, I decided to call Greg to find out where he and his wife were waiting. He told me that he was at the museum coffee shop. Normally, I enjoy looking around in Portland, but my world felt small, disconnected, and the observation of many things going on around me was obscured by the happenings of the day. I just wanted to deal with the car to relieve the anxiety I was feeling. I was hoping that the battery just needed a jump-start. Then, I could go on with the rest of the day, knowing we would only be out the cost of a battery. Greg and Kathryn came out of the coffee shop. I was glad we had a connection to them. It brought me some comfort. I looked into the coffee shop, knowing there was nothing I could eat there. I wished I could take my kids in and let them have hot chocolate. Due to autoimmune illness in the family, we cannot have dairy, wheat, or refined sugar, outing most of what is in the coffee shop. Coffee shops, which had been a joy to me prior to my illness and economic struggles, are something I now view as a toxic waste dump and poison to my body. I also could not help but think of the man at the main entrance. He would not be welcome here, because he likely could not afford to purchase anything and appeared to be mentally ill and homeless. Most private businesses seem to have a policy that excludes any one except patrons, especially downtown. I doubt that entrance would be allowed to those in the lower part of America’s “caste system.” A homeless or struggling person likely would not even be allowed to come in from the cold, to get a drink of water, or be permitted to use the restroom. As I examined the coffee shop and people coming and going, it seemed that most of the people inside likely “looked away” from the issues right in front of them. Perhaps this is a type of “bystander apathy” or protective mechanism that is necessary to function in an unjust world. I felt cynical and saddened by this fact.

A decision was made to go into the museum. In my fog, I ignored intuition and physical discomfort. I thought maybe I could sidetrack myself and then deal with the car afterward. It cost $53 for admission. It seemed so expensive. We never spend money on much of anything. I felt Greg and Kathryn had already given so much to us already, and it was touching that they wanted to do this. That said, I was shocked at the cost, and in our financial state, could not imagine spending that. I wished I had gotten the pass from the library.

We ventured into the museum, and I was so distressed about the car, I really was not able to enjoy the museum the way one would if his or her mind was clear of worries. Barry emitted distress signals to me, and like me, the “gears in his mind” were turning in an attempt to assess what was wrong with our car. My stomach felt really sick, and I made my way through the museum much in the way a mouse might makes its way through a maze or scientific experiment. My brain was “foggy” and unable to take in information normally. I tried to make the best of it though, because my family does not get out that much. This was a special occasion that I had looked forward to for over a month. We walked through different areas on different floors, and most of it is a blur. Finally, we decided to leave the museum, and I reluctantly approached our car. Our car was parked a couple blocks away from the museum and parallel to the streetcar line. We showed Greg and Kathryn where the car was and made plans to attempt to get the car going. I had a nagging feeling that it was not going to start.

Greg and Kathryn went to get their car, which was parked in a parking garage. Streetcars arrive about every ten minutes. This made our situation problematic, because you cannot block the streetcar. The only place to park to do a jump-start was beside us. There was a car in front and behind our car. We saw the streetcar approaching and knew Greg was on his way. I called to let him know what was going on. He arrived just as the streetcar was approaching. It was parked at the light a block from where we were. We told him to park across the street where there was angled parking. The streetcar passed soon after this.

LRtracks

He pulled his car forward alongside our vehicle, and we realized that his battery was on the opposite side from our battery. The only option at that point was for Greg to turn his car toward oncoming traffic. Greg has a calm demeanor, and this part is still funny to all of us. He got into the car and whipped across the street into the angled parking, which points in the general direction of oncoming traffic. Then, he threw it into reverse, got half way across the road before having to suddenly stop due to an oncoming car. Seemingly unfazed, he backed the car up in a “j” shape and abruptly pulled forward and parked. He was facing traffic on the streetcar tracks on the one way street.. People went around out of necessity. I said to Greg something like, “You really do not get upset over things, do you?” I think he replied, “That’s Prozac.” Barry thought he was joking, but I knew he was not. We got the cheap, emergency kit, jumper cables ready, which I had purchased years before at G.I. Joes. After setting things up, I got into the car to turned the key. There was no noise, not even clicking. I tried a couple of times. We decided to give it a few minutes thinking that perhaps it needed to charge first. I thought that was wishful thinking…and it was! It did not start. We concluded it was the starter after opening up the hood and acting like we knew what might be wrong.

For me, the immediate consequences of being stuck where I was without medications, food, and not in the best physical shape due to my autoimmune illnesses. Two other issues were immediate worry about our kids and money. We could not afford this right now. It is funny. I always feel responsible even when money is spent on things most consider a necessity. Any attempts to improve our financial situation appear to be an exercise in futility. The general feeling is one step forward, two steps back. I estimated this would cost $500.

With our car effectively dead, it was obvious that I was going to need to get it together and call roadside assistance. We gathered the information, and I went to make a call when I realized that I had low cell minutes. I asked if I could borrow Greg’s phone. I am not accustomed to newer phones and think he had to dial for me. Due to a bad connection, it was a frustrating conversation with me doing a lot of repeating with no success. The man on the line asked if he could call back due to a bad connection and said he would do so promptly. He did return the call, and after a nerve-wracking conversation, apparently I had conveyed the necessary information. The person on the line told me he could not say how long it would be but would call back shortly. I had asked if Greg and Kathryn could stay until I heard back about when the tow truck would come. This wait felt like an eternity to me. I finally received a call and was told that it would be roughly one and a half hours before the tow truck would arrive. I provided my cell phone number, making it clear that it was the number to call. The company had promised to call this number when the tow truck was ready.

Just prior to Greg and Kathryn’s departure, there was a incident happening at Plaid Pantry that was in plain view from our car. I heard the disturbance, was alarmed, and yelled for Joseph and Sarah to get into the car. I was in panic mode at this point, and I wanted to start the car and take off to safety. My body doesn’t produce the stress hormone, cortisol, properly. Effectively, even when I feel okay, it has been explained that the lack of proper production of this hormone causes the body to be in a state of “fight or flight” constantly. This day had been filled with stress. We watched to see what was happening. A man had approached a group of people, and it looked like it had the potential to escalate into a dangerous situation. Typical of this situation, their voices were loud and attracted our attention. What was strange is it looked like more of a awkward “dance” or faux boxing. While the aggravated man was trying to fight, and he had his fists up, the person he was trying to engage did not want to partake in the battle. I hoped the display, which was ignored like much is in the city, would end soon. I wanted to get away from where we were parked as soon as there was a clearing. Soon, the disturbed man went into the convenience store. Greg and Kathryn were there still, but I knew our visitors would be leaving soon. They had a long trip ahead of them. I felt internally unsettled, much as an infant might as his or her mother goes out of view, creating separation anxiety. We said good bye to them, leaving me with a feeling that we were on our own now in an unsafe environment, with our two children, and had no way of escaping if we needed to do so. In fact, my fears were warranted to some degree. With my sickness, having to prepare our own food, and no medications, there really had been some valid concerns about leaving the house. Even if I had brought everything with me, my health issues and our financial situation make obstacles much harder to overcome for me than for the average person.

PlaidPantry

After seeing that things had appeared to be “stable” at the Plaid Pantry, we decided to go to the Safeway, which was not too far away. It was cold, I needed water, and we were seeking any sort of refuge. Just outside the Safeway, there were two people that looked very cold huddled together. It was in the 40s, and I was freezing. I thought how terrible it was that it would be much colder as they day wore on. It was at this point I regretted not bringing these old blankets we have in the garage. I felt that would help these people a little at least. My expression on my face must have be obvious to observers as distraught, and I could feel that my eyes were downcast showing my vulnerability and unhappiness. This downcast nature of my eyes was not an attempt to avoid looking at those suffering around me. In fact, I could see them more clearly in the cold, unwelcoming, barely habitable area in which we were walking.

We went inside the store, went to look for a water faucet, and finally decided to ask for water at the Starbuck’s in the store. I was able to get water and we took a seat in the hard chairs. I cannot sit on that type of chair comfortably, and I had a wheelchair pad that we had left behind in the trunk of the car. Barry said he would go back and get it for me. I was so nervous and concerned for his well-being due to the incident we had escaped from minutes before. Assuring me the best he could, Barry went to get my wheelchair cushion. As we sat there, I noticed that the people across from us were not in good shape. One man seated to the left of where we were was talking to himself, indicating a “psychotic” state to me. The man directly across from us was having a noodle soup and had with him what appeared to be all of his possessions. I felt like we had joined the ranks of those that were on the sidelines of society. I knew we were in better shape than the people around us and felt guilty about that fact. Earlier I had found some money in one of my pockets and had hid it. I felt I should get change and distribute the money to those around me. Our situation did not permit for me to do this, and that led to more guilt. As bad as I felt, the store made me increasingly uneasy. After Barry returned, he told us that police had come to the convenience store. We saw the man that had been trying to fight walk by through the window. I thought we should go back to the car and wait there.

We made our way out of the store and started to approach the car. At some point, I realized that I had left my wheelchair pad in the store. Hurriedly, we rushed back to get it. As we neared the store, I could sense someone walking behind us. Barry and I heard talking and exchanged glances discreetly. With all of these devices and bluetooth technology, I assumed he might be on a call at first. It became obvious that this was not the case, because he became increasingly agitated, was walking very close to us, and the things he was uttering were odd though I cannot recall anything except profanity. I told the kids to go ahead and get into the store, and Barry and I walked as briskly as possible to get away from what we perceived as danger. With a sigh of relief, the door was like an entrance to heaven at that moment. The people were still huddled on the ground reminding me that this was no Utopia.

Sidewalk

My wheelchair pad is a nice one that was provided to me by my insurance. I would not be able to get another one any time soon, but I thought someone probably took it. It is a comfortable pad, and I totally understood that someone without money, a pillow, or blankets might see it as a treasure. It would certainly bring comfort to a person on the streets. Sure, I needed it to sit on hard surfaces, but these people experienced mostly discomfort in what has to be a painful reality. To my amazement, it was still there, but had been moved to another seat by a woman now occupying the chair I had been sitting in. We retrieved the pad, placed it safely into the trunk, and got into the car. We were not there long, and not wanting to be there, I decided it would be worth it to try to get back into the museum. I felt like it offered some warmth, security, and a way to pass time. I was not thrilled about asking if we could get back into the museum but did so with apprehension. We did not have our tickets. I was relieved when I saw the person at the front desk, because he had waited on us as Greg purchased the tickets. I hoped he would remember and let us back in. In an awkward display, I explained briefly our circumstances and that we had been there earlier. I asked him if we could go in. He asked if I had tickets, which we did not and told him so. He mulled it over a little, and ultimately, he kindly decided to let us go in explaining that we had 30 minutes until closing. He was nice to us. I thought about the other people outside that would not be afforded this luxury of a 30 minute break in a warm arena. I knew they would be turned away, and this caused a feeling of immense empathy and guilt once again. This did not seem just at all.

Not sure of what to do, Barry wanted to go to the lower floor, where he thought a scene from the movie, “Reds,” had been shot and in search of photography. There really was not much photography in this area, so we headed for the elevator and went back to the main floor to see where the photography exhibit was located. A museum guide explained it to us, and it was the beginning of a surreal experience. He got onto the elevator with us, which had a set of doors on either side. He pushed the button to the side opposite of where we entered. This other door opened, and he indicated to us to exit through this other door. The elevator had not moved from the main floor at all. He walked out one side as we departed in the opposite direction. It was as though we were being transported into another world and we sort of were. An enlarged, deliberately out-of-focus picture was the first thing I noticed on entering. Two videos were playing simultaneously and were part of the exhibit. Eerie music sounds mixed together with voices created an unpleasant sense of what “hallucinations” might be like. I felt like I was in the movie, “The Doors.” This band’s music alone is enough to create a disorienting state. But along with the scenes of psychedelic drug use in the movie, it was not hard to imagine the state that psychedelic drugs might produce. I felt nearly the same in this exhibit as I had watching this movie. We just had to leave the exhibit to get away from the pseudo-hallucinatory state.

Finally, to pass a few more minutes, we returned to one area on the second floor. I wished the tow truck would call, and then we overheard someone saying the museum would be closing soon and it was dark in there anyway. My cell phone rang, and it was Kathryn! Thank goodness she received the call and let us know! A tow truck driver would not have been able to park indefinitely in the area waiting for us.

I really wanted to get out of there at this point, because the museum was so quiet that it appeared we possibly could get left behind. We approached the elevator, and I started checking out the hard floors of the museum. I looked around to see where I could sleep or rest if it became necessary. I saw what looked like a wooden boat near the elevator, but concluded the hard, uneven surface would destroy me. With my pain, no cushion, food, or medicine, I concluded it would be very uncomfortable and unpleasant. Feeling this discomfort inside of a warm building, my mind strayed to how a person with no home would view the building. I had to believe it would be a sight for sore, tired eyes—a refuge to the homeless.

As we waited for the elevator door to open, an elderly woman, who looked confused as well, expressed concern that she could get stuck in there. We all got into the elevator. I remember this well. The woman said to us, “Well, there is safety in numbers.” Her presence both calmed and disturbed me as I felt her anticipatory anxiety. The main lobby door opened and she said good bye and went about her way into the world alone. Strangely, when she left, I felt more insecure and was concerned about her. In addition, we had lost the one connection to the world that felt genuine.

Exiting the museum, we rushed to the car fearing we might miss the person waiting to help us. Working in unison with the tow truck driver, I backed the car up to make room for the giant tow truck to park in front of us. Next, he quickly but cautiously secured our car to the tow truck. To add one last insult to injury, the inpatient driver of the streetcar honked at the man helping us even though there was plenty of room to get by the tow truck. It was as if he was saying, “Get out of my dang way!” The world was giving out signals that anything “in the way” should move on as quickly as possible. Being in the tow truck, I experienced some of the first relief since we had arrived. I did have a feeling that I was leaving a family behind. It felt like I was abandoning the people I saw that day, but I did not want to.

That day provided to me a view of this world that I had seen many times but through a different set of “lenses.” The layout of the streets in Portland is not something I know well, and getting lost is easy for me. In a way, this added to the experience, because I could sense the type of chaos and “lost” feeling this type of environment would create for someone in a “lonely” place in life. At one point, I noticed a doorway at the entrance of a building, picturing that as being an area that someone would go to escape the harsh, cold, and often hostile circumstances of life on the streets.

DoorWay

In my mind, I recounted the many times I had seen such horrific human conditions both in the United States and while in Indonesia as a 16-year-old girl. Prior to this journey, I read a story by a blogger, Tara Golden. She wrote a descriptive, personal narrative about her experience as a trans-gendered, homeless person in Portland. I imagined her in this very place I found myself, perhaps lying in a doorway or hidden corner much like the one above, feeling tossed away. Her writing had pointed out feeling a sense of not belonging, of not fitting in to the larger society due to being trans-gendered and homeless . http://www.oregonmarriageequality.com/2013/01/17/view-from-a-doorway/

Seeing the older kids at the Plaid Pantry, the people crouched down on the street trying to keep warm, and the many faces that were forgotten led my mind to recall articles pointing out how many of those people that were on the streets were part of the LGBT community, specifically youth that had been rejected after “coming out.” http://oblogdeeoblogda.me/2013/01/01/the-ongoing-plight-of-homeless-queer-youth/

Most of the time when I hear a comments about people on the streets, I hear things like, “Those people are lazy!” or “They didn’t try hard enough in school!” Sometimes, people say, “They just need to get a job!” There is often a conclusion that “they” want to live this life style. Here is my question. Why would any one want to live like this instead of feeling like a part of the world? It is necessary to examine the possible reasons that someone ends up on the street or compassion will not be present. Apathy, disassociation, blame, and inaccurate presumptions can and do lead to an absence of addressing issues affecting our world. It does absolutely no good for society but causes great harm to those being left behind. It really is ironic. There is so much talk about “connectivity” in the world, but this connectivity is an illusion. I would say comfortably that our family and many people feel fully on their own in what might be a paradise for others.

homelessInPark

All images are copyrighted and have been provided by Barry Savage.  To view his blog, see www.floatingframe.wordpress.com If you would like to make a donation toward my medical fundraiser, either donate using the button at the top right hand side of this page.  You may also go directly to the Youcaring fundraising site at http://www.youcaring.com/medical-fundraiser/cheryl-s-medical-fund/40186

Storms and Earthquakes

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Part 1–Storms and Involuntary Confinement

The year had been a rough one in 2009 for many reasons. The winter of 2008 brought harsh winter conditions, probably 20 inches of snowfall, and that is out of the norm for the Portland area. This carried into 2010 and led to my family being stuck in the house for about 3 weeks straight with the exception of one break, where we went out to a store and to get a prescription. Barry walked to a store with crappy food about half mile away once or twice. One reason we had to keep the temperature in the house set to 62 degrees was because the furnace was malfunctioning. Throughout the years, the air rushing into the house through the heater vents had caused continuous sweating and chills for me. With the furnace going on and off constantly though, it was very uncomfortable, and I had sweats and chills during most of our incarceration in the house. The chilled, uneven atmosphere, partly necessitated by lack of money, took a toll on everyone in the family. During this time, I noticed my feet developed purple blotches, swelling, and itching. This went on for months, and it was inappropriately treated with topical antibiotics for several months until I put a stop to it. Even my kids had some symptoms in their feet, especially my daughter. They were also treated with antibiotics. I was worried, because the kids’ pediatrician mentioned my history of the autoimmune disorder, Graves’ disease, which causes the body to attack the thyroid gland. This results in an overactive thyroid and an array of horrid symptoms.

Then, on the kids’ birthday in March, and one day after my anniversary, I took a fall on our steps leading to massive pain for months. By the beginning of May, I was beginning to recover from the fall. H1N1 was big news, and fear and hype were in high gear. One day, my daughter came home from school, and nothing seemed out of the ordinary. I was downstairs writing an email when I heard moaning from her room in the middle of the night. I ran upstairs. She was not really very conscious, had vomited in her sleep, and it was everywhere. I cleaned up, gave her anti-nausea medicine, and reassured her the best I could. She looked frightened as there had been reports of death from H1N1. I did not think it was that, but I do not know to the day what it was.

Not long after, I developed an upper-respiratory illness. I was out of commission from May until the end of the school year in the beginning of June. I remember walking in a weakened state from my car into the school to say goodbye to my daughter’s second grade teacher and to give her one of my pieces of pottery, a soap dish. Even after school ended, I was still exhausted. The illness caused severe lung and chest pain, and it also caused difficulty breathing due to the fluid in my lungs. Nothing was done to treat this except Reiki, a technique where practitioners use different hand positions over certain regions of the body. Reiki practitioners, like my “holistic” M.D., believe that they transfer “universal energy” through the palms allowing for the individual to heal and for a state of “balance” to be restored in the body. While I had some interesting experiences with Reiki, it did not work in this case. I finally asked for antibiotics, which appeared to help some. I remember this part well, because it was strange. This same doctor wanted me to help choose the antibiotic.

Preparing for a garden, we enthusiastically went to the store to get tomato plants. I remember I was walking and suddenly extreme pain started going through my arches. I could not stand it and felt I had to get home quickly to take my shoes off, which I thought might be the problem. After rushing home, I took my shoes off immediately, and my arches looked like they had knots in them. Alarmed, I tried using a machine I had to treat this, which delivers low level current to tissues in the body. This was an exercise in futility and marked the beginning of very rough times for me. From June to late December or early January, I could not walk without blood curdling pain. It hurt to wear shoes, walk for any length of time, and I saw two podiatrists that offered little hope. Concurrently, I developed debilitating pain all over my body, especially in the hands, arms, shoulders,hips, and knees. In the fall of 2009, I started going to physical therapy and a chiropractor. I also had painful injections into my feet and into the lower part of my spine a few times. The symptoms begin to die down starting in December, and I was more functional by January. Other than physical therapy and chiropractic, I had been largely housebound, confined to a recliner, or bedridden. Well, I did get to go to a host of other providers that had no idea what was going on and said it was “just fibromyalgia.” There was also one enjoyable 10 hours spent in two appointments at the local dental school, and a few other appointments not worthy of mentioning.

While 2010 was not perfect, by late February, I was able to make a much-needed trip to Vancouver, Washington to see my dermatologist. It had been years since I had seen this doctor, and this necessitated filling out another bunch of annoying paperwork. I am certain this paperwork never gets looked at, because I am always asked the same questions in the room when I see the doctor. That was the the case with this appointment. It was because of the length of the paperwork that I had arrived at the doctor’s office early that day, likely one hour in advance. I must have been doing slightly better, because I never would have ventured out on my own if I had not been. What caused me to make this appointment is that I was having a strange pain on the cartilage of my left ear. This is the area people often get piercings in, and I feel so glad that I never chose to do this. I had noticed this pain over the years, and I had mentioned it to a doctor. Her response was, “Your ear looks red. It is probably from sleeping on it.” I hate to say that I thought to myself that it was not necessary to go to medical school to tell me that information.

With this ear pain, I would wake up in the morning unable to turn over. I know it must sound foolish, but it was and is incredibly painful as a condition. Usually, it was accompanied by incredible pain in my shoulder. Often, my partner, Barry, would have to help me turn over as I was paralyzed from pain. Other times, it was a slow process on my own, filled with pain. This agony coupled with inadequate treatment led me to have to make a trip up to Vancouver, WA. It was a trip to remember for sure, and a terrifying one as well!

Part 2–Earthquake

I never like to go to Vancouver, and this was no exception. I made my way through the familiar landscape from my house to my doctor’s office, arriving one hour early. The drive is not a particularly interesting one. Most of it is freeway, and it makes the drive feel even longer. While Vancouver and the Evergreen State attempt to welcome me in with a sign I cannot even picture in my mind, going there reminds me of where I grew up in Twin Lakes, WA. Like Twin Lakes, this was another lonely suburbia, but this area is particularly inhospitable. Much like a customer resisting handing over a check or cash to a salesperson, my foot reluctantly pressed into the accelerator pedal, with me being sucked into the abyss of this area. Vancouver has a saying, “Keep Vancouver normal.” This saying appears to be a response to Portland’s “Keep Portland weird,” This might not seem like much of anything on observation, but that slogan of Vancouver’s means to me, keep anyone deviating from the norm out. Moreover, keep the evil threat that the nearby city elements present out of Vancouver. I know there are many decent people in Vancouver, because my own family lives there. This represents my impression of the area, however.

Regardless of my feelings about Vancouver, this is where my adventure took place. I do not like seeing doctors, as usually they have a history of doing nothing for me, often adding insult to injury. I was happy that I could drive by myself, however. After parking, I entered the building I had been in too many times over the years. The image of the inside of this building on the first floor is burned into my memory. Upon entry through the double doors at the building’s entrance, if you look off to the right slightly and then straight ahead, there is a Shamrock Medical Supply Store. Just prior to that store and to the right is an elevator leading to a multitude of medical provider’s offices. To the left of the medical supply store is the stairway that leads to the upper stories as well. I have never liked elevators, and the elevator in this building, I specifically did not like. The building is relatively new, but it seems like a rundown yet sterile building. I had grown to hate it over the years of going there to see two different doctors, one of them being this physician.

I decided to take the stairs. I opened the door to make my way up. Immediately, I heard a loud sound and the walls fell like they were vibrating. I looked up at the lighting, and what appeared to be an electrical source to it. I thought, “Why do they need such powerful lights and electricity in the stairwell?” The feeling was so intense that I made my way as quickly up the stairs as possible. Anyone that has watched movies likely can recall scenes when stadium lights are turned on. It makes a loud, powerful, electrical sound, but usually after that, just humming that is often tuned out by listeners. This reminds me of the intensity of sound I heard, except it was a sustained, highly amplified “buzzing” sound. Think of a the sound that florescent lights make in a department store, except perhaps dozens of times stronger. While it is true that I hate elevators, this was too much as an alternative. Finally getting to my floor, I quickly opened the door to exit to what I thought would be relief, making my way to the doctors office. The thing is, the vibration did not stop. By this point, I thought it must be an earthquake. I had not heard anything on the first floor so this was plausible to me. I continued to the office, opening the door. I checked in at reception, looked around, and everyone seemed to take no notice of the shaking of the walls. The floor felt unsteady underneath my feet. It is hard to describe this, but I guess it felt like shttps://twitter.com/omeone was using a jackhammer very close to, if not inside the building perhaps on a lower floor.

I asked for my paperwork, and proceeded to sit down to fill it out. I kept looking up though, because it just kept going. No one seemed fazed by this. I have always been sensitive to noise and vibration, so I thought maybe only I had detected the earthquake. I have read and watched fascinating accounts of animals detecting things with some sort of internal mechanism humans do not seem to possess as a rule anyway. I remember reading that elephants had gone to higher elevations to escape an eventual Tsunami as humans watched perplexed wondering why the elephants were doing this. They would come https://twitter.com/to know not much later as catastrophe hit. Maybe something like that was going on with me. Furthermore, I was slightly embarrassed to ask anyone as they were all in their own worlds. I remember a child was playing games on a touch-screen phone, talking with his dad.  It had been so long since I had out of my house, I had not seen this type of phone before. I figured a kid should be scared to death with the shaking going on.

My hands still hurt from the mysterious illness that had yet to be diagnosed or paid attention to, so I tried to focus on filling out the paperwork. I figured the earthquake would stop at some point. It was distracting though, as it continued with quite an intensity for a good half an hour, likely more. I completed my paperwork and made my way to the receptionist. She told me to have a seat, and the doctor would call me soon. I have heard that before, but this doctor did not usually make me wait. I specifically scheduled an appointment right after his lunch so I would not have to wait. Unfortunately, I waited over an hour. While the intensity of the vibration of the walls and floor decreased, it by no means disappeared. It certainly did not while I was in the waiting room. Finally, a medical assistant came and called me back to a smaller room. I sat there in a pained state as the the medical assistant asked the me typical questions that I had just filled out. “What medications are you on?” she asked. I indicated that it was all in the paperwork, somewhat frustrated that I was being asked to repeat it when I had diligently filled out what was required. I was told the doctor would be right with me. This time it was true, because my doctor walked into the room minutes later. By that time, most of the vibration had stopped. In fact, while it was on my mind, it faded into the background as I discussed my symptoms with the doctor. He did not mention an earthquake and seemed to not notice it either. Weird! He told me that I had a condition, and I cannot recall the word, but it is known loosely as “cauliflower ear” or “boxer’s ear.” He explained that sleeping on one side, something I commonly do, was likely the culprit. Then he said he was going to give me an injection of cortisone into my ear. He should have said in three or more areas, but he did not. He left the room, prepped the medication, and came back. He had me lie down, and then he proceeded to inject three times into my ear. This hurt in a way it that is hard to describe, and I think he was trying to be quick about it, but that made it worse. We talked for a little bit, and he asked me to make a follow-up appointment. I stopped on my way out, scheduling an appointment. Then I left the building. I hoped that this would at least help relieve some discomfort in my ear.

I made my way out of his office, and considered options for leaving the building. I decided to take the elevator, because the experience in the stairwell had been too much for me, regardless of its cause. The elevator trip was uneventful, but I really did want to leave. I was grateful to be out of the building, and I just wanted to get home. Fortunately, the experience stopped after I plunged through the double doors. Once home, I wanted to know if there had actually been an earthquake. I got online, and I searched the Internet. There was no indication that an earthquake had taken place. I thought perhaps, being as sensitive as I am, maybe I just felt it because it was a low magnitude one. However, the intensity of the shaking reminded me of an earthquake we had in the early 1990s. I felt the news would have reported an earthquake of that magnitude. I was stumped. It made no sense to me that the vibration would have continued beyond the stairwell if it was the lighting and electrical there. I knew something was wrong, but there was really no way to verify it.

Some time later, I had to go up for another appointment in Vancouver. That appointment was located in a converted house across the street from the building where my dermatologist works. This time I took my family, and I told them I wanted to go to that building to check if the lights still made as much noise. I really wanted them to hear it and see it for themselves. After my appointment, we drove across the street and parked in the parking lot. We all went into the building. I opened the door to where the stairs were. The noise I had heard simply was not there. I could hear the humming of the fluorescent lights still, but it was not loud at all. I often heard fluorescent light noise, so that did not surprise me. This led me to conclude one thing, and it did frighten me. There was no earthquake! It was in my brain. An overactive nervous system or neurological event must have been responsible. While this was concerning to me, most of what I told doctors had got me nowhere. I cannot even remember if I brought this up to a doctor, but I likely did. Most of the things I bring up the doctors are met with a typical answer. I usually get one of two responses. It is either, “I don’t know,” or “It is your fibromyalgia.” For the most part, I get the latter answer.

Traditional medicine revolves around covering symptoms with medications, which usually causes other issues. In addition, chronic conditions like the ones I have experienced in my life are not dealt with well in medicine. Even acute issues can be problematic for physicians. Emergency rooms are set up to handle that type of medical problem. Chronic issues are not really looked at the same, with doctors often missing, dismissing, or judging their patients. Moreover, I believe this is because they do not know what to do, but that is another topic.

This is one of the myriad of experiences I had and amongst the most disturbing, and I could not help but think again, “Is there something wrong with me?” More aptly put, I always knew something was wrong with me but had no idea what it was. It would be some time before I had any answers. Little did I know that it would not be until November of 2011 before I got any answers about my autoimmune disease. These symptoms, I believe, were evidence of the autoimmune diseases with which I was contending. My body was at war against itself!

When I think of that building, and the physiological “earthquake” I experienced, it reminds me of how my body feels. Just as I wanted to escape the building to a safer environment , I have often wanted to escape my body as well throughout the years. I often say to my husband, “I want to get away from myself…,my body.” I also have a second type of prison though. I have felt and feel very alone with much of my illness over the years. The fact is, people cannot feel what I am experiencing at the time it is going on. Because of this, they cannot see the war that is going on in my body. *

*Below is a link to the the fundraising site to help me get treatment.  It gives details on my health struggles, which have gone on for years.  If you can, please donate to help me win the “war” in my body. Small donations add up and can get a great cause.  $1-$5 donations are great.

You can also donate through Paypal directly at donationsforcare@gmail.com. Donations are being taken by my sister, Maria.  Thank you for reading and for any support! *

*Below is a link to the the fundraising site to help me get treatment.  It gives details on my health struggles, which have gone on for years.  If you can, please donate to help me win the “war” in my body. Small donations add up and can get a great cause.  $1-$5 donations are great.

You can also donate through Paypal directly at donationsforcare@gmail.com. Donations are being taken by my sister, Maria.  Thank you for reading and for any support!

http://www.youcaring.com/medical-fundraiser/Cheryl-s-Medical-Fund/40186