Sunday, November 13, 2011

Doctor, I Trust You

"I observe the physician with the same diligence as the disease." ~ John Donne



For the most part, it is difficult for me use those two words in the same sentence, unless the prefix "mis" is used in front of trust. In some ways, my mistrust of doctors is surprising because in general, I am a very trusting person. However like any other relationship, the patient-doctor relationship is vulnerable and when that trust is broken over and over again, it is then difficult to enter into another patient-doctor relationship with the confidence and trust that is needed to build a cohesive team.

I have very good reasons not to trust doctors. To start with, I am a registered nurse. I have spent a lot of time working in a teaching hospital and have seen firsthand the potential and actual mistakes that can be made when treating a patient. I have witnessed more times than I can count, novice and experienced doctors alike make grievous mistakes that sometimes have been thwarted by nurses and other medical professionals such as pharmacists. Sometimes, those mistakes do reach the patient.

However my bigger trust issues with physicians is due to my years of experience in being a patient. My first bad experience came when I was twenty-four years old and had Stage Two Hodgkin's Lymphoma, which was misdiagnosed for over six months because two different doctors did not think it was probable for someone my age to have cancer. Then I was told several years later that heart palpitations I had been experiencing were due to anxiety; only to find out four years later that I had an actual conduction problem in my heart which was causing my heart to not function properly (AV Nodal Reentry Tachycardia). The third incident occurred over the past several years when I was battling a host of physical symptoms and was told by doctor after doctor that they could not find anything wrong with me. I was convinced I had an autoimmune disorder. Several doctors were convinced I was crazy. That myth was dispelled when a lip biopsy came back conclusive for an autoimmune disorder called Sjogren's syndrome.

It would be easy to sit back after all of this and say "to hell with them" but the reality is, I need doctors. I also need to be able to trust the people who have my life in their hands. Easier said than done. So how do we do it? How do we build a trusting relationship with our physicians?

Like any type of relationship work we do in our lives, we have to start with ourselves. We have to look at what we do on our end that acts as a barrier between us and our doctor. For me, it was a matter of checking myself at the door. Because no matter who the doctor was or what the problem was, I always thought I was right. Of course I didn't always let my doctor know this. Sometimes I would verbally disagree with a diagnosis or a treatment idea, but then other times I would go along with what they said, yet never really trusting that they had the right answer. The problem was, I was confusing thinking I was right in terms of medical knowledge with being right in terms of listening to my own body.

The attitude of not trusting what my doctor was saying was counterproductive because in order to heal, you need to believe and have faith that what you are doing to your body to heal it is making you strong and well. I fully understand that I got this attitude from incident after incident of being let down by doctors, subsequently putting my life at risk. After a while though, you have to stop judging people based on something wrong someone else did to you in the past. It doesn't mean we cannot be educated and well informed patients. It means that we are partners with our physicians and we need to hold up our part of that relationship.

There are several other steps I have taken to build a trusting relationships with my doctors (I have several). To start with, I doctor shop. I find a doctor who is going to treat me with the care and respect I deserve. Because if they do, then when differences arise, we can attempt to work them out. I don't doctor shop intentionally and I know this is frowned upon by the medical community, but if I have a doctor who either dismisses my current health concerns or cannot figure out what the problem is, I leave. Pure and simple. I may have worked on checking my cockiness at the door in terms of my medical knowledge, but I know my body. I know when there is a problem. Because of this tactic, I am on my fifth rheumatologist in three and a half years. And you know what? After all that time, I finally found one who correctly diagnosed the autoimmune disorder I have and is working with me to find the most beneficial medical treatment for my disorder.

I go to my appointments prepared and well informed so that my doctor takes me seriously. I ask questions, lots of questions. Not questions to challenge their medical knowledge, but questions that require an explanation for a diagnosis, treatment, or medications. Answers that will help me to understand what the plan is and subsequently help bolster my confidence in them. Finally, I try to remember that at the end of the day, my physicians are just human. They are not perfect. They are not God. They are people like you and I who happen to have a lot of education; which enables them to be called "doctor". Therefore, when one of my specialists forgets a detail about me and asks me again because she just returned from a weeklong conference on the other side of the country, I take a deep breath and just remind her.

Trust takes time to build. And patience. I am now starting to reap the benefits of taking these steps towards building trusting relationships with my doctors. I am more receptive to trying new approaches to managing my illness, whether it is conventional or alternative. I am less anxious. Although I still keep careful track of what is going on with my medical treatment, I am not lying awake night after night wondering if someone screwed up. I am confident in the choices I have made in my medical providers and because of that, I can give up some of the tight fisted control I have felt I have had to maintain over the past sixteen years or so.

I feel a little lighter.

A little freer.

A lot more sane.

Tuesday, November 8, 2011

Nor'easter 2011 ~ Part Two: Nine Days

You can read Part One of this blog entry here: Nor'easter 2011 ~ Part One: Survival

We had hope after seeing our precious home all in one piece, but the aftermath from the storm was just beginning. It became quickly apparent to us that it would not be feasible on that day to live in our house. Access to the house was difficult at best and since we had lost power, we had no heat or water. Although we had a fireplace, I knew staying there would be extremely difficult for me since the cold (45-50 degrees) temperature of the house would affect not only my joints, but the Raynaud's symptoms I was experiencing as well. There was also concern over the fireplace affecting my asthma. After weighing our options, Chuck and I decided to go to my brother's condo which was a few towns over. His two bedroom home was going to be cramped with both of us, my brother, and my parents (who were also displaced) being there, but at this point, it was our best option. Luckily, our dog sitter was able to obtain a generator for her home and she agreed to keep our dog Molly with her for as long as we needed.

Trying to get down this road the morning after the storm.

Although Chuck was optimistic about how long our power would be out, I was not. Just from looking at the damage to the trees, wires, and telephone poles, I knew it would be several days before services would be restored.

Several days?

It was nine.
Nine days.

Nine days of uncertainty. Nine days of living out of a duffel bag. Nine days of traveling back and forth from wherever I was staying back to Belchertown. Nine days of trying to manage my autoimmune illness without the tools I needed. Nine days of conflict, worry, and stress.

The days immediately after the storm were like nothing I had ever experienced. Although we were able to hear from all of our family members, the same could not be said for our friends, especially the friends who were at the church with us that Saturday night for the play. Cell service (except for occasional texting) was down for about 24-48 hours and landline as well as internet communication was non-existent for many people. As we drove through Belchertown and other surrounding communities those first two days after the storm, nothing appeared to exist as it previously had. Supermarkets were partially lit on generator and open for nonperishable food only. Cashiers wore winter coats over their clothes. Access to gas was a serious problem and wait times at the gas pump could be as long as an hour. Schools were closed indefinitely. Shelters were set up in many communities for people who did not have an alternative place to live. Many people could not go to work due to massive power outages throughout New England. Life as we knew it had changed.

The red circled area is the massive power outage on the east coast

When an event of this magnitude occurs, oftentimes people feel isolated and disconnected. Although I was staying with various family members throughout the week,  I still felt very disconnected from my community and the world in general. It was posted on Facebook a few days after the storm that the parish hall at my church would be open as a shelter during the day. I clearly remember the first day I went to spend some time in the warm parish hall. I had been at my house for about an hour getting some clean clothes and necessities as well as checking on the house. Then I went to the church. I was so exhausted, in pain, and frustrated with still not having power. I walked up the steps into the parish hall and there was my minister, with a smile and a hug. All of a sudden, I felt reconnected. I felt like I was home again.

There were a lot of other emotions I felt that week that I was not used to experiencing or at least not experiencing so intensely. Anger...fear...helplessness. As the days continued on, the biggest issue contributing to all these emotions was the inability to get our power restored. The storm was on a Saturday. Fallen trees were not removed from our road until Wednesday and we did not see a single utility worker until Friday. Every time I would drive down the road, I would hold my breath in the hopes of seeing a truck from National Grid (the power company for my town) working on the lines but for five days, there was nobody. There are many theories as to why this situation happened the way it did. Some people say the storm was so devastating and covered such a large area, that it was impossible to get power restored quickly. Other people were saying that National Grid was unprepared for managing a disaster. Now looking back, I personally feel that it was a combination of those two factors. The reality was that at the end of the day, it didn't matter the reasons. I was still homeless.

  I knew everyone I cared about was safe. I knew my home was intact. But as the days went by, I became more and more desperate to return to my routine. I missed my dog. I missed sleeping in the same bed as my boyfriend, who had decided to start sleeping back at the house in order to keep an eye on our house. Things were not the way they were supposed to be. I was baffled with myself because I was so fortunate in that we were not injured, our home was not destroyed, and I had a warm place to stay at night. What right did I have to feel so upset?

What I came to realize over the course of those nine days is that I had every right to be upset with the situation. My safety had been threatened. My home had been threatened. My overall wellbeing had been threatened. I was a victim of a natural disaster.


This is not a word I like to associate with myself but that did not make it any less accurate. We were all victims on that fateful day in October when Mother Nature decided to take her fury to New England. But the residents of Belchertown, Massachusetts, and all the other areas hit by this devastating storm became more than victims. We became survivors, in every sense of the word. We stood by each other as best as we knew how with what we had. We gave refuge to each other. Sometimes that came in the form of a warm place to sleep at night. Sometimes it can in the form of a hot meal after eating packaged food for days. Sometimes it came in the form of a hug or a safe place to cry. I know in the town of Belchertown, I felt, as I have in the past, a feeling of community.

Our road (Route 9) two days after the storm

It has now been twenty hours since the power to our house has been restored. Twenty hours since I returned home and got my life back. But not exactly back to the life I knew. It's a little different now. The shower feels hotter. The bed feels more comforting. The trees in our yard give me pause now.

I am a little more vulnerable than I used to be.

More humble.
More appreciative.

All because of nine days.

Sunday, November 6, 2011

Nor'easter 2011 ~ Part One: Survival

"If you have a major disaster involving hundreds of thousands, or in this case millions of people, whether it be a natural disaster or an act of terrorism, the first 72 hours are going to be totally chaotic no matter what you plan to do." ~ Warren Rudman

We went out that night, despite the weather warnings of a significant snowstorm. Snowstorms in New England are not a novelty. Seen one snowstorm, you've seen them all is my thought. I was involved in our church's production of the popular play "Our Town" that evening and as they say, the show had to go on. The cast had been rehearsing for weeks and this particular Saturday night was the last performance. I probably would have given anything to stay home that night due to a recent flare up of my autoimmune symptoms and from keeping a more hectic pace than usual over the past few weeks. But I had committed myself to the show and I was determined to see it through to the end.

It began to snow around 2pm that afternoon and as I got ready to be at the church for 6pm, I kept telling myself that soon I would be able to be at home and snuggled in my bed. I had nothing scheduled or planned over the next several days, except for Sunday church service, and I could get some rest which would hopefully help alleviate some of my symptoms. I had decided to send my dog to the dog sitter's house overnight since we would be away from home for longer than usual that day. Little did I know that I would not see her again for five days.

During that afternoon and evening, the winter storm blew through parts of New England causing widespread devastation. Snow total amounts in Western Massachusetts varied between 10 and 30 inches. Trees were still loaded with leaves; therefore the snow and wind caused damage similar to a hurricane, rather than a snowstorm.  While we were inside the church entertaining about fifty to sixty people and putting on a great performance, unbeknownst to us, our small town was being ravaged by the storm to a degree that none of us could have anticipated.

We decided to postpone our cast party after the performance that evening and got into our cars to make the slow journey home. As Chuck (my boyfriend) and I drove at a snail's pace through the center of town, I started to get the eerie feeling that this was not just a typical snowstorm. Everything was pitch black; the signs for the stores, the traffic lights, and the street lights, everything. It was difficult to even navigate ourselves through the familiar streets without our usual landmarks and traffic signals to guide us. Since we only live about seven minutes from the church though, I figured if we took our time, we would make it home eventually.

That was, until we came to our road, which is actually a main state route that traverses the length of Massachusetts (Route 9). Cars were backed up in front of us although initially, we could not determine why. Cars that were coming towards us in the opposite lane skidded this way and that way, narrowly avoiding crashing into us. Some cars were abandoned right in the middle of the road. To say the road conditions were treacherous would be an understatement. The road was pitch black and with limited visibility. Tree limbs and whole trees themselves were falling onto the road. We couldn't go forward and we couldn't go back. As we eventually moved a little further along the road, we were told by another motorist that one of the trees had fallen across the road onto a car and there was no way through. There were no police or emergency personnel. Vehicles were turning around and heading back towards town, which was delaying the traffic. Cars without four wheel drive were requiring several people to push the vehicle up the hill. At that point, we turned around in the road and began heading back towards town.

As we waited for each car to be pushed up the hill, I sat there with my heart racing. Very few times in my life have I ever been that scared. Why? Because we were sitting ducks. As we idled on the narrow road with guardrails on each side, we could hear the cracking of the trees and their limbs. I kept my right hand on the car door handle and put my legs in a position to enable me to quickly exit the car should a tree start falling down on our SUV. Chuck kept his eye on the road while I kept my eyes on the trees around us.

Luckily I had posted on Facebook via my cell phone that we were having difficulty in order to warn others who may be heading down our road. A friend of mine, who lived back in the center of town, responded that although she had no power, she had running water and a gas fireplace. More importantly, it was a safe place for us to spend the night. We precariously made our way to her house and over an hour later, thanked our lucky stars for having made it to her home safely.

Our road (Route 9) two days after the storm
 The next morning we attempted to make our way back to our home, initially with no success. We were also low on gas in my car (I know, my mother always yells at me for keeping my gas tank too low!) and then realized exactly what a tough situation we were in. Nobody had power in town; gas stations, ATMs, restaurants, convenience stores, NOBODY! We decided to try and head towards Amherst, which is the next town over, and were shocked at what we saw. Fallen trees, snapped utility poles, fallen power lines, abandoned cars. Everywhere. At some points, we actually had to do a bit of off roading with my SUV in order to get over to the next town. Luckily we did find a gas station to fill up at one hour later where it was widespread panic. People were grabbing nonperishable goods off the shelves as they didn't know when they would be able to gain access again to a store. ATM machines at the gas pumps were sporadically working. We realized that we only had $45 in cash between the two of us for god knows how long and we were trying to figure out the best way to use it. Eventually we got one of our credit cards to work at the pump and we tucked the $45 away hoping it would be enough to see us through if we had no access to banks or ATMs over the next several days.

We then decided to try and make our way to our home from the opposite end of Route 9 which was the road the gas station was on. Luckily our dog was not home alone (so glad I booked that dog sitter!), but I had none of my medications and we feared the worse had happened to our home. We live on a lot surrounded by large oak and pine trees and all I could envision was one on top of our home. Both Chuck and I had spent some time back in June doing some relief work in a nearby community that was struck by a tornado and the images of those obliterated homes was all my mind could see.

As we drove further down Route 9 towards our home, we were stopped at a road closed sign by a town police officer who instructed us that we could not continue down the road. I got out of the car and told him that I needed to get medications, especially since the stores were all closed. After giving us specific instructions about how to deal with fallen power lines, he allowed us through the blockade to go as far as our car would let us. He told us we may need to walk a part of the way. My Kia Sportage got a work out that day, but held steadfast as it swerved around downed power lines and large trees to deliver us right to the top of our driveway. It was so strange to leave our car right in a road that usually sees traffic zooming by at 50mph. Now, the usually busy road looked like a path through an area of dense woods.

As we approached our property, I could barely hold back the tears. They say that when a disaster strikes, the most important thing is that you and your loved ones are safe. While this is true, it is also traumatic to be dealing with the possibility of where you call your home no longer existing or being severely damaged. Where would we go if we couldn't live there? What if our safe haven in this world was no longer? I could see Chuck tense up as we got closer. This house was so important to him. They say that a house is just a building but it wasn't. It was our home.

Our home was still there. And in one piece. Relief flooded my body. There were more trees down than I could count, but the house was intact. There was hope.....

Photos Courtesy of Chuck Myers/Christine Molloy

Tuesday, November 1, 2011

Ravaged Massachusetts

Quick post from storm ravaged Massachusetts.

On Saturday October 29th, a major winter storm hit New England and has literally paralyzed many areas of this part of the country. The area I live in, which is Western Massachusetts, saw about a foot of snow which while not unheard of around here, the damage it has brought is unusual. Because of the storm's early arrival, leaves were still on trees and most of the western part of the state, as well as other areas of New England, have lost power due to fallen trees. After driving around this area hunting for gas and food over the past few days, I am shocked that more people were not injured or killed. There has been one death that I am aware of related to this storm.

That was three days ago. I am forty years old and have never experienced anything like this. It is difficult to find gas in this area and food is limited to non-perishables at stores with no power. Some areas are slowly having power restored thanks to the efforts of our local power companies as well as many out-of-state companies. However the damage is great due to the amount of downed trees and power lines. Communication is difficult however appears to be improving very slowly.

My boyfriend and I are fortunate because I know one person who did not lose power through the grace of God. We have been staying at my brother's house about 25 minutes away from us. Our home has no heat, electricity, or running water (we have a well) therefore we are quite grateful to be here. Our dog Molly was spending an overnight with a dog sitter Saturday night until Sunday afternoon. Thank God she was there because we were unable to get back to our home Saturday night and have not been able to stay at our house since. Our dog sitter also lost power but she got a generator and has agreed to keep Molly with them until we can bring her back home. The circumstances at my brother's home make it difficult to have her here as my parents are also camping out here during the day. I am so grateful for this dog sitter.

We were finally able to get to our home after the police gave us permission to drive down to the house to get my medications, clothes, etc. Then yesterday Chuck and I went back to make the driveway accessible and clean up some trees. The house is in one piece. The worst thing that happened was we lost a good majority of our perishable food and will probably lose the fish tank.

I plan to write more about the experience in the near future but the shoveling I did yesterday (Chuck was doing trees), sleeping on an air mattress for several nights, the change in my environment (i.e. dryness factor), and overall stress has made an already existing autoimmune flare worse. I have no access to my acupuncturist right now for obvious reasons so I caved and took some narcotics and am going to try and get some rest in my brother's bed while he is at work and Chuck is at work. I am hoping later today or more likely tomorrow to get to my dog sitter's house to spend some time with Molly. Meanwhile, we wait for the power to be restored and for life to return to a more normal state. We also sit in the great appreciation of how fortunate we are.