The Eternal Winter: Living It, by Bridget Reynolds




Having sickle cell anemia can be very limiting if your type is very temperature sensitive. Being in the wrong place for too long can make you stiff, achy or land you in the  emergency room. Unfortunately, because the environment is under heated or over cooled, more and more places are becoming the wrong places. I am very sensitive to cool temperatures. I call it iguana syndrome. 

I have been known and ribbed for wearing sweaters in the summer. I am known to disappear momentarily to warm in the sun. I have to. I like to feel the hot sun beaming upon me (when the humidity is low). It warms my shoulders, my back. Its as good as a heating pad. If the humidity and the heat index are not too high, it feels like a warm bath and recharges me. I am like an iguana. Some think its cute. I hate this fact.

My dander was raised high but soon quelled very recently on a trip to the grocery store. I was no stranger to the fact that grocery stores are colder than most places. I always brought along a sweater and was sure to wear long sleeves.  

Trying to make my way around the produce department in my small neighborhood grocery was difficult. I was determined that I would work fast and get the heck out of there. I already knew what I wanted to purchase. The produce was cold and wet. My fingers began to freeze and there was a damp chill that went straight through my 'warm' clothing'. I could not seem to open those clingy produce bags fast enough.

II raced my cart toward the checkout picking up one or two items on the route.  Thinking I would just leave it there and go out in the sun to warm up, I informed the cashier I was not abandoning my cart. I had to get something from my car. I would be right back. I walked out and stood in the sun, like an iguana.

Once thoroughly warmed, I was ready to try it again. I should be warm enough to stand in the line and check out. This time around I was hit by a cold front went the automatic doors opened. My first instinct was to just buck up, grin and bear it. I knew it wasn't that simple. It's not simply about comfort. Its about cells. Round red blood cells that change shape when over cooled. My cells will sickle and die even more prematurely.

They will get stuck in my capillaries and attach me. I turned and walked out. I walked to my vehicle and sat there. I wondered, how can I get my groceries? Maybe I can call someone and have them check out for me. Maybe I will leave them and come back another day. No. I needed the fruit, and the few items I was able to pick up on my way to the register. Finally I began to back out of my space when a young man and a elderly lady passed along. I stopped in my tracks. 

I got out, this was my chance. I will put my pride aside and get someone to help me with my groceries. I explained my situation to the young man from the grocery store who was assisting a lady with her groceries. He was happy to help.

He went so far as to check out my groceries for me. I gave him the means of payment and had to trust him with my card and my password. I later found out he was the sun of neighbors whom I had grown up with. He was such a nice young man, I told his supervisor of his kindness.

 

Applying for Medical Assistance Can Make You Sick

Experiences like these are not rare. They are not only an inconvenience but a threat to health. A threat to independence and access to what others have access to and perhaps take for granted. It can lead to isolation. My most recent experience was trying to apply for medical benefits at a local government office. Once again at my appointment, I was armed with longs sleeves and a sweater. I even had a throw in my car.

I was surprised when I entered and saw so many people and a line that wrapped and curved, that it would be that cold. So much for body heat. I knew what I was in for. I have learned from the past, from ignoring the cold and braving it what it could cost my health, how it affected my finances and credit. Who wants to be sick and in pain? Who needs another hospital bill. 

I knew I could not wait  in there. I approached a desk and immediately a security guard approached me and inquired as to what I was inquiring about. (They have to keep order after all.) Where is your appointment letter? I searched for it in my bag of hospital papers, bills, and the things I had organized before I left. I could not find it. It must be at home. re-filed in that accordian file I had dropped and my papers scattered all over--just as I was leaving.

I must have left it home, I informed the guard. "You are not ready," the guard retorted. I could get in the express lane otherwise. I told her I must have re-filed it after I dropped my file folder. She let me in the express lane. In the express lane I told the receptionist of my needs. I would be outside the door. I could not possibly wait in this cold.  He said he understood (but not really), and told me there were 19 ahead of me. 

I waited outside and darted in and out like some cigarette smoker with an urge. I could do like one does in county hospital waiting rooms. Leave for a hour or so, and return. What if he had flagged my name and I was to be called sooner? I couldn't leave. I would sit out and be patient. After waiting an hour or two I decided maybe I wasn't being flagged, maybe my name may be called and I would not hear them.

I approached the information desk. The female guard tried to stop me and I was intercepted by a short stocky guard. I told him my situation. Suddenly the female chimed in to the people behind the desk. "She keeps coming up to the desk " (it was only my second time), the guard complained. I resisted. "I need reasonable accommodations under the law. Its too cold in here. I will get sick." She snickered. I was being 'Katrina-ed'. I told her I would call Springfield, and that she could not legally interfere with me while seeking reasonable accommodations. She shut up. The lady behind the desk referred me to the supervisor.

The supervisor said she would give my case to a particular caseworker and would tell him I would be waiting outside. I would be seen immediately, after his current customer. I went outside. I waited, and waited. I moved from one spot to another avoiding cigarette smokers. I had just recovered from pneumonia. Everywhere I moved it seemed there was yet another person smoking. My sinuses were draining and I began clearing my throat constantly. It hopeless. 

I approached the desk once more. The supervisor checked to see why I had not been called. The caseworker misunderstood. He thought she meant I would be outside of his door. He called my name and listed me as a no-show. He would see me next. I went back outside and finally a very pleasant man appeared and called my name.

I weathered the interview and just barely made it out without much pain. I had just celebrated two completely pain free days in a row. Applying for healthcare was about to ruin it, and put me in danger of another crisis. My most recent hospital bill was $126,000, not counting doctors fees.

Even emergency rooms are a threat to well being. My last wait in the emergency room was almost unbearable. ERs are so cold. My penultimate visit the the ER was so unbearable, I got up and went home because I would be more comfortable there. When I am in pain, I  go to the  when the pain gets unbearable. Cold temperatures can make a sickle cell crisis worse. Where can I find a place that is safe? So, now here is my question and my quest.

Temperature Settings In Public Places

 

Are retail stores and public places 'over' air conditioned?
If you are feeling the chill, click the video.
 
In the never ending quest to stay warm, I searched for other opinions and
literature on temperature settings in public places. Most of what I found was
concerning the workplace environment. Despite this, all manner of professionals
(from lawyers planning mediation meeting places, to event planners and designers)
must consider thermal comfort when planning their projects.
 

Literature suggests cool settings are necessary to prevent the escape of

volatile organic compounds in the environment. At higher temperatures

textiles, painted surfaces, treated wood can emit odors and compounds that
may affect our health. Maybe we should not be using them.
 
Some even consider that other organic compounds (body odors) be part of the decision
making process, when considering where to set the thermostat.
 
Some authors do not agree that excessive cooling is necessary
for computers and electronics.
 
Most workplace guidance suggest that the real deciding factor is whether people post complaints about temperature. Which means the majority rule. I rather like the formula
 
Majority + energy factors (within reasonable limits) + risks and benefits to individual health and well being.