There seems to be an inverse relationship between my Hemoglobin level and Anxiety level. Hemoglobin is a protein in the red blood cell that carries oxygen through the body. As the hemoglobin decreases, I become more easily annoyed -- with myself and everyone around me. I get the anemia double-whammy from the alpha thalassemia trait (red cells are smaller and oddly shaped) AND low hemoglobin count.
The difference between me with hemoglobin at 12.0 and 9.5 is 'Marina the Upbeat, Can-do Gal' and 'Marina the Grouch.' 12.0 is fun to be around; 9.5 and below is best to avoid.
The filter between my thoughts and my voice has thinned over the course of prolonged illness. I used to be a pretty tactful person, able to smooth ruffled feathers and still get a point across. Active listening, patience, body language and good humor are reliable communication techniques. I've studied non-violent communication and practiced appreciative inquiry as a part of my spiritual growth and leadership development.
Yet when the hemoglobin dips below 9.5, all bets are off.
Active listening morphs into "what the heck were you thinking??"
Patience evaporates in the midst of household procrastination (isn't it a good idea to save big clean-up projects for the hour before company is to arrive?).
Humor is replaced with sarcasm: "of COURSE I know where your [insert any random item] is. Let me turn on my magical internal GPS device that tracks items I've never seen or used and find it for you."
While I'm not quite ready to appear on the Jerry Springer show, it seems like I'm trying out the role. My gripes, rants, and sarcasm are not how I'd like to be remembered, especially by those who get the brunt of my mis-placed frustration ~ my loved ones.
If life is my Advanced Placement exam, I'm clearly not ready for graduation.
I offered several "reasons" for my crankiness:
* teenagers are self-aborbed * it's the anemia talking
* 'no one' shares my sense of urgency * not enough oxygen to the brain
* we don't live in a barn * fatigue causes frustration
The correct answer may be "all of the above PLUS fear"
When my blood levels are closer to normal, I feel good enough to keep busy with the kids, help with the marrow registry drives, and spend time with friends. I don't make time to contemplate the upcoming stem cell transplant.
When the need for a blood transfusion approaches, I am so fatigued (this is different from feeling 'tired') that I physically cannot do as much. Climbing the stairs sets my heart pounding and I rely on the handrail to rest. I spend time in bed or on the sofa with hopes of 'recharging' enough to complete a basic household task.
When I'm forced to be still, questions and thoughts about what lies ahead bubble up in my head. Will I get a matched unrelated donor? Will it come through in time?
What happens if the myelofibrosis progresses too fast to acute leukemia before a donor is found?
What kinds of complications could happen during transplant process?
My organs have endured a lot of stress the last 6 years with the blood clots and medications. Will I be strong enough to over come the challenges?
How will my marriage change? What about Alex's senior year in high school ~ how will I keep track of him? What about Katrina's first year in college? I've seen enough movies on the Hallmark channel to know that mom's illness can reek havoc on kids' academic performance.
These thoughts remind me that control is truly an illusion, albeit one of my favorites. The feelings of vulnerability and powerlessness over my future stir an inner rage. It is not my happy place. I've read enough pop-psychology books to know that anger is a mask for fear. No amount of scenario planning can sooth the ever-present frustration that lies beneath a seemingly smooth, confident veneer.
It seems that I can accept the uncertainties when I'm busy. I comfort myself by doing what I can to help others, be present with my family and friends. I embrace my positive outlook and an inexplicable but real sense of peace that everything will work out for the best.
2 comments:
I, too, have Polycythemia Vera. I also suffer from Migraines. I started reading your blogs a couple of months ago. I think you are an amazing, strong woman to deal with your health issues (to put it mildly), raise a family, and still have the mindset to blog! I'm so glad I found this. You can really put things in perspective for me....and you use the medical terms that I hear at my doctor visits! I pray for you daily. And I pray that everything goes well with the transplant. Thank you for being an inspiration to me...
Very informative blogging, keep it up!
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