02 April 2016

Chronic Illness: Pain, Fatigue, and other Symptoms

After living with the various symptoms and ever-changing treatments for autoimmune disorders, I have become an expert of sorts. The next several posts to this blog will be dedicated to my friends who also juggle their energies, meds, and coping skills to managing their own chronic illnesses.

Fibromyalgia, lupus, chronic fatigue, MS, Chrone's, psoriasis, and other autoimmune disorders have many symptoms in common: chronic pain and fatigue, brain fog, digestive disorders, weakness, sleep disorders, and more. We also deal with abundant medications, advice from well-meaning friends and family, difficulty maintaining healthy relationships, and the plethora of health-related articles on what we should be doing -- advice that changes with the seasons! To say the least, it's a tight rope we walk daily. So, we tend to stick together on social media and elsewhere. Each autoimmune disorder has a variety of online support groups, including Facebook pages. I encourage everyone to respond openly to these posts and let us know which support groups have provided you with the best advice.

Last week, my husband gave me a paperback book for my birthday, It's more like a magazine, entitled "Solutions for Living with Chronic Pain," (2016) from the Mayo Foundation for Medical Education and Research. I will use this as the basis of my next several blog posts. My intention is to include a few quotes from each of its eleven chapters, with quotes by people who have posted online. I hope this venture will benefit as many as those who read it and pass it along to others.

I recently joined a web site called MyLupusTeam.com, "a social network for those living with lupus." It's quite sophisticated, interactive, and very personalized. I'll be look for other such websites serving the needs of others. Feel free to offer directions to any helpful such sites.

24 March 2016

Retirement's Unexpected Pathways

When I decided to resign my adjunct teaching position four months ago, I had no plans--period. Our home sold in November 2015, so we decided that if a move was imminent, we would move the 90  closer to the kids and grandkids. That seemed to make everyone happy! Fast-forward to March 2016: we are embedded in our new neighborhood/village called Midvale in the historic Fort Union area of Salt Lake City. Our well-worm condo sits comfortably in a quiet enclave surrounded by pine trees full of owls, woodpeckers, and myriad other birds. Our cat Emer loves to sit at the windows and watch the birds, itching to be let outdoors to go a-hunting.  Mark works part-time at a DIY store nearby, and I have become the personal assistant to a woman [we'll call her LeeAnn] that I have come to count a dear friend. In the three months that I've been going to her home, I have seen her health go from "not good" to "poor." Finally, she received a reliable diagnosis this week that came as no surprise to me: celiac disease, Hashimotos, and fibromyalgia. Here came the Crone in her life: I let her know that she has to acknowledge her serious illnesses to her family, letting them know how very sick she is. Then she has to give herself permission to rest, to do nothing, to heal. It's going to be a long process, and she is going to travel a path that she had not planned on going down. But luckily for her, she has people to support her who have already traveled that path.

In 1994 I was exactly where LeeAnn is today. I had resigned my teaching job, and went home to bed. I stayed in bed for the better part of six months, thinking "I'm either crazy or I'm very ill. I need to know which." That thinking took its toll on my psyche, but I had a great therapist.  And it took more than a few doctors to diagnose my initial autoimmune disorder, lupus (SLE), in January of 1995. By the end of that year, I had obtained a divorce from my first husband, ending a marriage that had long-since run its course. A year later, I fell in love with and married my sweetheart Markie, and we'll celebrate our 20-year anniversary just eight weeks from now on June 1st.
There is life after autoimmune! But one needs a strong support system, a caregiving spouse, a good primary care physician, and the honesty to say, "I'm too sick to (fill in the blank)." It's a roller coaster life: up one day and down the next. You become very selective in how you spend your energies, because once they are used up, it may take more than a few days to build them up again. I love this woman for her courage and for the sweet smile she wears in spite of pain, fatigue, discomfort and frustration. That smile, the one we all learn to put on, will become a double-edged sword that she will use to fight the good fight while using it to mask the symptoms of her illnesses. Dear sister, I thank God for leading me to you, so that I can help to lift you up when you need it. God bless you


05 March 2016

Political Correction

        This blog is generally a place for storytelling about my experiences and those of my guests. However, this issue demands acknowledgement. It cannot be denied that there is a disconnect between my generation (Classes of 1965-1975) and those who came later. We had our own version of political correctness: no swearing on tv; no using the n-word, the b-word, and the f-word in real life; no littering; road rage didn't exist; calling our elders Mr. and Mrs.; the teacher was always right; we wrote thank you letters for gifts received; and so forth. We knew the euphemisms for Latinos, Africans, Irish, Italians, Portuguese, Asians, but we didn't use them because our friends came from these circles of people.
        So, I'm just speechless after reading this recent article about a party on a college campus. I have no words to even begin to express my bafflement over this event. Please, readers, let me know where the disconnect begins between political correctness and absurdity. I promise to read your responses deeply and considerately. Read on...

09 February 2016

Another season ends

As the 2015 football season officially ended with the 50th Super Bowl this week, I found a list of football movies to watch during the offseason.
Rudy -  starring a very young Sean Astin (whose mother, by the way, is Patti Duke)
Remember the Titans - one of Denzel's best; he plays real-life coach Herman Boone
Jerry MacGuire - Tom Cruise feeding his less-attractive side, but a lovely young  Renee Zellweger
Friday Night Lights -  never seen it, but looking forward to it
The Blind Side - the story of Michael Oher's emergence from poverty to the NFL; he played in          Superbowl 50 for the Carolina Panthers. Great feel-good movie for the whole fam!!
The Longest Yard (1964) - a great classic starring Eddie Albert and Burt Reynolds (when he was hot)
Varsity Blues - a must-see for Paul Walker fans; lots of then-unknown actors you will recognize!
Any Given Sunday -  shines an unappealing, albeit fictionalized, light on the NFL as a business.
Invincible -  my all-time favorite football movie, starring Mark Wahlburg as walk-on Vince Papale.
Knute Rockne All American - 1940 classic starring Ronald Reagan, and Pat O'Brien as Rockne.
We are Marshall - great come-back story starring Matthew McConaughey and Matthew Fox. I had the privilege of meeting two Marshall professors who lived through this era of their school's history. They gave me a copy of the DVD. I prize it.
The Replacements - an all-star cast that includes Gene Hackman and Keanu Reeves; not my fave.
The Waterboy - Adam Sandler, Kathy Bates, Henry Winkler. Very funny! (I was in a movie with Henry Winkler - great guy.)
Brian's Song (1979) - sobbed myself ugly watching James Caan and Billy Dee Williams in this classic. Must-see, and you will recognize the music!
Undefeated - a 2011 documentary on high school football
The Program - I've yet to see this 1993 classic starring James Caan.
My All American - an emotional bio-pic starring Finn Wittrock as UTEP player Freddie Steinmark.
Draft Day - here's a newer feel-good film, with Kevin Costner and Jennifer Garner. I love this!
Concussion - nominated for Academy Awards (2016), here's a stunning look into the concussion-syndrome that continues to plague the sport, especially among former NFL and college players.
Fighting Back - college player is drafted and sustains injury in Viet Nam; returns to play.
Black Sunday and Two Minute Warning - both films are about terrorists targeting NFL stadiums

There are others, but these are the most notable. You're welcome!