JustOnlyJudy is feeling thankful. And melancholy. Touched by breezes of cancer...friends of friends. Family of co-workers. Clients and strangers. So why thankful? Because I choose it over fearful. And I could go either way when these winds start to blow. I choose to listen to the whispers from the tops of the Douglas firs as the wind blows through them. Mostly quiet, secretive whispers. I choose to listen to the splat of the raindrops and the silence of a tear drop. I choose to be thankful for what I have today. For being alive at the age of 43. I might read my 50 by 50 list with an increased sense of urgency. I might wonder what I would choose if my list could not be so long. I might apologize faster, try to be more patient, try not to sweat the small stuff. Melancholy. Oh it dances in quietly...often starting as a happy memory..of my boys and their cousin Aaron, like a third son to me on countless trips to the coast. Always the peacemaker between my boys. The memory dances around until I am looking at Aaron and he is posing for his family pictures before he leaves for Basic Training. He left today. My little cousin, a tall young man. My peacemaker heading off on a new adventure. He is bright, strong, competent and mature. He has a world of potential waiting for him and I am very proud of him. He will grow up fast. Perhaps he already has and I missed it. It really does happen so quickly. And there's the anniversary. Next week. Ten years since my diagnosis. Thankful for what I have done, for where I am, for my support. My sons who have learned to help when I struggle, to stay calm when I 'lose my &*$#'! To quietly retreat until their real mother returns from her foray into rambling distress..fueled by my perception of chaos. But the chaos is mostly internal, despite my lengthy description of the state of our electronics and the kitchen. They have learned to know that. And I wish they had never had to learn to know that. It has occurred to me tonight, in sharing the "Take the Noodle" story with Hunter, that Andrew may have offered me a noodle by going to the grocery store for me. By not losing his cool while I lost mine. Ah.... the melancholy for what I wish had been and could be different. Life is precious. And fleeting. What will you do tomorrow that will make you smile? Our founding fathers had the sense to ensure "life, liberty and the pursuit of happiness". Too many people talk about the middle one. I want to talk about the last. Our society has taken a turn toward the workaholic, success and material driven state that leaves people forever grasping for their 'happiness' when it may be sitting right next to them, or across the table, or down the hall in their bedroom, or outside in the forest. Pursue it people! It was important enough to be in the foundation of our country's beginnings. Talk about it! Check out the "Happiness Project". Look for some happiness tomorrow. I will...I think it can win a dance-off with melancholy!
It is MS Awareness Week. I am in a foul mood. It started last Thursday when I got horribly overheated. 70-80% of people with MS experience ‘heat sensitivity’. That’s a nice way of putting it. According to www.nationalmssociety.org some people notice that their vision becomes blurred when they get overheated—a phenomenon known as Uhthoff's sign. I love these symptoms that are usually named for the genius doctor that discovered them...generally by listening to their patient. These temporary changes can result from even a very slight elevation in core body temperature (one-quarter to one-half of a degree) because an elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses.
Another fun one that I get is Lhermitte’s sign. A brief, stabbing, electric-shock-like sensation that runs from the back of the head down the spine, brought on by bending the neck forward. That’s a super fun one. But it is lessened somewhat by medication used to treat my trigeminal neuralgia and dysesthesias. I guess no one got to name those after themselves.
Last Thursday, as I slowly overheated, I noticed my vision worsening.Followed by a decrease in balance and fine motor skills.Fatigue, the ‘chronic disease knock you on your butt’ type, came to visit around lunchtime.The signals from brain to body began short-circuiting as my damaged myelin nerve coverings reacted to the temperature.All of those ‘signs and symptoms’ mentioned above just kept ramping up, until guess what?I was in a bad mood.Short tempered.Let’s call that Judy’s sign. An almost uncontrollable desire to do socially inappropriate things like smack people who are talking fast, smash holes in windows to increase ventilation, rip the thermostat off the wall and other downright unfriendly actions!
By the time I got home Thursday evening I was a mess. As my body cooled the muscle spasms began. Debilitating for at least an hour. The exhaustion was there for the rest of the evening, I felt as though I’d run a marathon. But why is my foul mood persisting four days later?Because I have not gone back.And tomorrow I must go back.To where?My fantastic new workspace, large and luxurious, giant windows, peaceful quiet…and a thermostat set at 73-77.I have been avoiding it like I would avoid Death Valley.Luring me in with its loveliness.Bloody Hotel California!!!!
While all of those signs and symptoms are awful, it’s Judy’s sign that I am most afraid of. Because that is the only one that anyone else can see!I have the good fortune of having mostly ‘invisible symptoms’.There is my MS Awareness week lesson for all of you.Just because someone with MS ‘looks good’, it does NOT mean they are feeling good. Instead of just saying “You look great!” try “You look great but how are you feeling?”
I have a large portable A/C unit at my desk but it can’t fight that temperature, it is not designed for such a use.I have a fan.I went shopping and purchased ‘climate appropriate’ office clothes and some super strong deoderant! I will wear ‘Big Blue’, my trusty cooling vest, invest in frozen foods, a bag of ice and smoothie ingredients. I will bite my tongue when someone says, “you’ll adjust”. I will pull my hair up and wear slip on shoes with no socks. I will run my wrists under the cold water and splash it on my neck every couple of hours…going back to my desk slightly damp so as to allow the evaporative process to help me cool off. Is it altruism for my co-workers, stubborn pride or simply survival? I don’t want to answer that.I’m angry that I even have to ask the question.And thus the foul mood persists. I certainly had some bright spots with friends and family this weekend, don't get me wrong. But the return to the Hotel California has been weighing on me. For the record, this is not the time to suggest that I quit work. I am not going out that easy. Speaking of going out...I'll try to leave you with a little humor...at least from my warped brain. While learning about the communicable disease process during my studies this weekend- "It is important to know all portals of exit from a reservoir". Indeed.
It is probably good timing, in the midst of my melancholy MS anniversary approach, that I find myself engrossed in studying for a national certification in order to maintain my recent promotion. While I work in a scientific field, science and mathematical reasoning do not come naturally to me. In order to help my brain comprehend the heavier scientific concepts that I am studying, I will rely on the trick of the metaphor. Luckily for me there were plenty of excellent poet/philosopher/scientists that steered me through my studies in school and taught me this clever trick. Leopold, Steingraber, Terry Tempest Williams and even Edward Abbey…thank you for turning science and environmental studies into stories and art.
My posts for the next two months, as I prepare for the exam, are likely to feature some of my lessons learned each week.Interesting facts.Disturbing realities. Latin names. And last but not least, metaphors.I will actively seek the metaphors for two reasons.They will help me remember the scientific rules and facts…but perhaps even more importantly, they allow me to see the patterns of nature in my day-to-day life. To apply the laws of science to what can seem a chaotic emotion charged situation.Despite my propensity for fiction and creativity, logic has always brought me comfort somehow. Just maybe it will bring you some comfort as well.
This week’s interesting fact: The human respiratory system has an exposed surface area as large as the surface area of a tennis court.Wrap your head, and alveoli, around that one!
This week’s ‘found’ metaphor for parents: In addition to the dangers of underprotection, overprotection (against chemical exposure) may be health threatening because of the physical and psychological strain.
Wrap your arms around your children. But not too tight and not too long.
This week’s ‘found’ metaphor for chronic illness: Emergency Management essentially consists of four areas: Prevention or mitigation, preparedness, response, and recovery.
Prevention: Eat healthy, exercise, get your rest, and take your medication.
Preparedness: Get some disability insurance if you can, have a savings, keep your health insurance. Create an ‘emergency response’ plan. What are your biggest fears? Now make a plan for what you would do if those things happened. Old environmental health saying, “If it can spill, it will”.
Response: Don’t panic! Pull out your ‘emergency response’ plan and follow it. See your doctor if something weird is going on.Do not stick your head in the sand.Be flexible. Federal law requires emergency notification in the event of a spill- go ahead and call on friends and family and let them know you need a little help.
Recovery: Be patient. This phase is often much longer than the response phase.
I will leave you with this.Beware of vectors people.Beware of vectors that are people. Technically, vectors are insects or arthropods that spread disease to humans, often by biting or sucking. Think mosquito. Now if you have any vectors in your life that can walk and talk, you will need to consider the seriousness of the problem and the degree of intervention needed. Integrated Pest Management is complicated and I suggest the assistance of a trained professional.
Hug your kids, get your rest and stay clear of mosquitoes …until next week.