A Chronic Life...A Very Cold Chronic Life
The chronic life. For those of you that don’t know the origins of the phrase “chronic life”, it was created for a project on Twitter by longtime arthritis and rare disease advocate Brit. She used the hashtag #ChronicLife to tweet her life for 24 hours. The goal and hope were to help create a better understanding of the life of someone with arthritis and a rare autoimmune disease. To reduce stigma by fostering a greater understanding of our lives as a chronic patient. Brit’s project was a huge success and the #ChronicLife is still used today, almost 10 years later. It is in that spirit that I’m going to share the past week of my #ChronicLife, it’s been a tough week.
Early Morning December 31st – Sometime during the early morning of Sunday, December 31st my furnace quit working. Not sure exactly when I lost heat that morning, but I do know it was biting cold when I first emerged from my warm bed, like hurt cheeks cold. The most surprising part was how sharp the temperature chance from my bed to my bedroom was. If I’m going to be that cold, I better be skiing some deep powder or at least have the world’s best hot chocolate in front of me with a fresh, organic doughnut to snack on.
After talking an extra hot shower, I drove to the nearest Black Rock coffee since they have XL drinks. I needed an XL, hot Irish Coffee to help get my body temperature back to normal. In addition, I wanted to kill several hours in the hopes the sun would warm up my house some before I started troubleshooting why my house was so cold.
While drinking my Black Rock Irish Coffee, Facebook reminded me that 7 years prior I had awoken to a freezing cold house. For some reason, the pilot light in my water heater and furnace kept going out for reasons nobody could figure out. After the nice service repairman checked both appliances, he taught me how to safely ignite a pilot light on my own. I’m not sure of the reason why but for some reason lighting a pilot light scares the hell out of me even though it is statistically a safe procedure. Our brains, does anyone truly understand them.
With that in mind, I left Black Rock around 3pm that day with the hope that my house would be a few degrees warmer. My water heater is in my garage and my furnace is in my attic. Since I still have some PTSD from my rock-climbing accident, climbing into my attic did not appeal to me so I decided to check out my water heater. Much like 7 years earlier, I could not see the flame and the water heater was not making a sound, so I assumed history was repeating itself.
After rereading the instructions 12 times, I felt somewhat confident that I could restart the pilot light. Of course, the mechanism to light it is near the floor so I got down on my hands and knees to begin the process. As the instructions stated, I held down the red button on my left while simultaneously pressing the lighter switch on the right. Nothing happened. Released both and ran through the procedure again, still nothing. Not good. I turned the gas off and waited 10 minutes before trying again. Still nothing. No noise, no flame, nothing. Well crap on a damn stick, I thought this was proof that I needed a new water heater. Not good.
Here is a great example of what the chronic life means. My rheumatoid arthritis, degenerative disk disease, and severe osteoarthritis does not like dramatic temperature changes. These conditions prefer consistent temperatures. So going from a nice comfortable house to being able to see my breath while watching tv was causing my pain levels to rise quickly (pain has also caused my heart to go into AFib in the past too). I did not want to sleep through the night without heat so I decided it would be worth the expense to call for an emergency visit from a qualified repairman. As dad was fond of saying “it’s only money”, it they could get my heat back on then it would be well worth the emergency visit fee I would have to pay.
Unfortunately for me, the repair man on duty was working a job on the other side of Boise so it would be a couple of hours before he could get to my house. When he arrived at around 5:30pm, I was outside trying to find interesting birds to photograph because it felt warmer outside than it did in my house at that point. First, the good news. He was able to get the pilot light going in my water heater quickly. Turns out I was not holding down the switch long enough to generate a spark to ignite the gas. Embarrassing but reassuring, I didn’t need a new water heater like I had thought.
The bad news. After running a few checks on my furnace, he told me my lower blower motor was fried. I was going to have to get use to the cold because since it was a holiday weekend, he couldn’t even order a new motor until Tuesday, Jan. 2nd. Not good. I was going to have to monitor my water heater because if it went out again my pipes could potentially crack open due to being frozen and my pain levels would be rising with each passing cold hour. Oh, I forgot to mention that the modem for my internet broke and I couldn’t get a new one delivered until Jan. 3rd. No heat, rising pain, and no internet…at least Black Rock still had my favorite pumpkin bread in stock.
UGH, the chronic life!
Tuesday, January 2nd – Tuesday was supposed to be about 2 things. First, I would hear back from the heating company on when they might be able to get a new motor for my furnace and how much it would cost. Second, at 2:30pm I was scheduled to have a cervical spine injection. If the day ended well, I would know when I might be warm again and have less pain in my neck. As I’m sure you have already guessed by my tone, Tuesday did not go well.
Tuesday began for me at 2:20 am. Why 2:20am you ask, well that is when my body could not take the cold anymore and woke me up. When I say could not take the cold, I mean that my cheeks physically hurt, and my neck felt like it was frozen together. Despite sleeping in fleece pants and a thick hoodie, I could not stop shivering either. I was up and there was little to no hope of going back to sleep for even a few minutes.
At 8:59am that morning, I received a text from the heating company I was working with stating that the new blower motor was “approximately 3 business days out” and would cost $710.00. Obviously, being unemployed a $700 unexpected expenditure hurts but I had access to means to make it a reality, so I responded with “Please get the new Blower Motor as soon as possible”. They responded with “Ok Thx you – will order today”. I mention this because it is now January 7th and I have not heard anything about my new blower motor. FYI – The forecasted low for Monday the 8th is 18 degrees. If I build a campfire in my living room do you think that will increase or decrease the net value of my house?
By 9:01am on that Tuesday, it looked like there was heat at the end of my furnace problem…or so I thought at that moment.
Since I was having a cervical spine injection, I needed a driver. So shortly before 2pm I arrived at Mom’s house to pick her up so we could go to my pain management clinic for the 2:30pm injection. Traffic was surprisingly light, so we got to the clinic at around 2:18. While at the front desk doing the necessary paperwork before any healthcare can happen, I was asked if I had stopped my blood thinner. Wait, WHAT?! No one had told me I needed to stop my blood thinner before the injection.
I’m on a blood thinner because in 2019, I was unexpectantly diagnosed with Atrial Fibrillation (AFib). To get my heart to beat normally again, I required 2 cardio inversion procedures and 2 cardio ablation surgeries in a span of like 90 days. Since dad had multiple serious strokes, so did his brother uncle Clark, I was put on a blood thinner as a precaution. Ironically, I guess you could call it, there is a good chance that my AFib was partially caused by the chronic pain from my neck for which the cervical injection was supposed to help with. New research is showing that living a life of chronic pain can cause a multitude of health issues, pain hurts in more ways than we realize. Often the chronic life is about managing many conditions, both today and potentially in the future.
After conferring with the procedure nurse, my cervical spine injection could not happen and would have to be rescheduled. I was not a happy camper, not only was I not told to stop my blood thinner, I had left multiple voicemails the week before to schedule this procedure, but no one had called me back. To get the procedure on the books, I physically went to the clinic to schedule it so I couldn’t be ignored. Also, in anticipation of having this injection, I had taken 2 Xanax to help with the pain. The chronic life in all its glory.
Wednesday, January 3rd – During this furnaceless time, I’ve discovered that if I fry up some chicken, hamburger, or a steak at around 6pm or so that will heat my downstairs enough to be comfortable until bedtime which is around 9pm (bedtime meaning I need all the covers on me to remain non frozen). To help facilitate this, I’ve been going to the gym between 4 – 4:30pm. On this day I was running late, which isn’t unusual for me, which meant I didn’t get to the YMCA until 5pm.
Wednesday was a bad day pain wise. I always take an OxyContin before heading to the gym, on this day that meant my 3rd one by the time I was going to work out. If you are not familiar with Opioids, they are not really pain relievers so much as they are time managers. By taking an Oxy before I work out, my hope is to be able to get through my entire workout (which is roughly 50 minutes) before my pain spikes or gets so bad I need to quit and head home.
My workout begins with 30 minutes on the stationary bike. I’m never going to be weightlifter strong, but I can earn a good cardio fitness with regular gym visits. About 12 minutes in, my neck pain started to spike. Worrisome yes, but there are some stretches I can do while riding that usually help when I start to spike. That day, my stretching seemed to only piss off my neck. By 20 minutes the struggle was real as the kids say. Looking back, I probably should have quit at the 25-minute mark because that is when I started to lose range of motion. At 30 minutes I maybe could turn my head 5 degrees without severe pain. Severe pain is manageable, a lack of range of motion means I can’t drive without putting everyone at risk.
Bad news, I’m a bad combination of stubborn, determined, and arrogant. I wanted to at least try the hip machine (my left hip is resurfaced and my right hip is replaced) before determining if I could continue or not. Through pure stubbornness and being an experienced long term chronic pain patient, I made it through 2 sets. However, I knew a third set was out of the question. I had pushed it too far. Not only did I have tears in my eyes from the pain, but my right hand had also gone numb. Before even thinking about driving home, I needed an ice pack and some time to work on some breathing exercises that help control pain (mindfulness and Cognitive Behavioral Therapy are great pain management tools people). Luckily, the front desk at my Y knows I’m a walking disaster so they were more than willing to get me an ice pack and time.
After about 10 minutes of ice, I had feeling in my right hand again. In addition, I had probably 20 to 25 degrees of movement in my neck before I experienced pain. The ice had done its job, I was now able to drive home with only minimal risk to myself and other drivers. The chronic life…
Chronic Conclusion – The chronic life obviously never ends, that’s what chronic means. However, according to Word, I’m nearing 5 pages and am already over 2100 words so I’m going to end this post now, so it doesn’t become a chronic post. HEHEHE I just made a chronic joke, ok maybe I don’t have a future in comedy.
As I mentioned earlier, I’m still without a working furnace. Monday’s low is forecasted to be 18 degrees, the bad news is by Friday that 18 degrees is forecasted to be the high. If I don’t have heat by then I’ll probably have to find a different place to sleep at least. In addition, I’ve also discovered that my health insurance company, Blue Cross of Idaho, has no record of my December payment, there is a good chance my January payment will be lost in their system, and I no longer have access to their portal due to “upgrading” system issues. Not a great time to be having issues with my health insurance, especially considering my pain levels.
Despite all of this, living a life in pain is easy to accept. Life has given me illnesses and accidents that don’t have an easy treatment or management plan. This doesn’t mean I don’t have a right to live a life I can enjoy. If I can get my neck pain under control, I would love to try shoe shoeing for the first time. If I can get to a point of regular workouts without needing to stop before I’m finished, I’m going skiing at some point this winter. If I can convince one interviewer that I’m a quality hire, I’m still hoping to land a dream type job so I can have a career to be proud of. Here is the thing, if life tells me none of these things are possible then so be it. All that means is I need to redefine my chronic life to match the circumstance of that moment. Hopefully I’ll have a working furnace at that point, so I don’t have to go to a coffee house every day in order not to freeze.
