Category: healthcare

Remembering… 24 years ago…

Deb
October 1995 The NAMES Project displayed on the National Mall in its entirety. Photo from https://www.aidsquilt.org/

24 years ago…

24 years ago I walked the mall with my 3 month old daughter in my sling. I had heard that The NAMES Project Quilt, a memorial of people who died from AIDS, would not be shown in its entirety again. I wanted to see it, so I packed a diaper bag and the baby, and headed down via Metro to the National Mall.

I remember that it was a pleasant fall day, not too hot, with bright sunshine and a brilliant blue sky. As I exited the Metro in front of the Smithsonian Castle I was enveloped in the crowds of people, and the recitation of all of the names. Family members and friends signed up to read a portion of the list. The names… on and on… read by voices cracked with grief.

I walked some (not all) of the quilt. At one point I stopped to feed my daughter, watching people go by. I changed her diaper and started walking again. She was a little fussy, so I rocked her in the sling, slowly gazing at the quilt, each 3×6 foot panel representing a life, a friend, a family member, a lover. They stretched on endlessly. I found the index of panels and located a panel from a friend from college. I heard stories from strangers. I cried with them.

At one point, a young man rushed up to me, tearful and angry, “WHY would you bring a baby to this? To THIS? She won’t remember!” I felt his anger, his sadness, and possibly a little bit of fear. We started talking, and he shared his story, and his partner’s story. He showed me his lover’s panel (I had just walked by it.) I looked at him and said, “She won’t remember. But I will tell her she was here. And then she will know…”

That baby, now 24, is a teacher. Statistically, that young man is probably dead. I find that sobering… And if we went to see the AIDS Quilt today it would be over 50 miles long. According to the CDC, (which estimates these statistics):

  • in the US – 38,739 people were diagnosed as HIV+ and there were 15,807 deaths
  • in the world – 36.9 million people with HIV+ and there were 940,00 deaths

While the incidence of HIV+ is decreasing, the prejudice against individuals who are diagnosed continues. As it was in the 1980s, access to adequate healthcare, including early diagnosis and treatment, is dependent on where you live, your socioeconomic status, your race, and your sexual identity. Antiretroviral medications can be expensive and have debilitating side effects. And finding a physician and care team who will support a patient who is HIV+ and their loved ones is a challenge in some parts of the country.

Even more difficult is finding a church… sadly. If you live in just about any city in America, or attended a PRIDE parade, you’ve heard a street preacher condemn people with AIDS/HIV and speak words that are cruel and homophobic. (I won’t quote them here. They get enough airtime.) The God of mercy and grace who Called me to ministry is not a punitive, angry God.

So on this anniversary of The NAMES Project display on the National Mall, I hope you’ll reflect for a moment on what we could still do as individuals, as churches, and as a nation. We have a long, long way to go.

Three steps forward, 2 steps… SPLAT!

Deb

Kneepain
The stylish but practical ice pack

Go tell my knee,
My achy-breaky-knee,
I really don’t like landing on the floor.
So if you tell my knee,
My achy-breaky-knee,
It might straighten up and walk some more…

(apologies to Billy Ray Cyrus) 

This has been a frustrating week. Frustrating in that aggressive rehab is “on hold” for several more weeks. Yes, the meniscus still has a tear. (No magical healing happening!) The effusion is back. The stiffness is back. The pain (thank the LORD for cortisone shots) is nonexistent, unless I try and do something stupid, like squat or kneel.

But the swelling isn’t “normal.” Not even an older knee that “hit the pavement.” I’m following a new regimen, and using what the orthopedist called “good old common sense.” Conservative, careful, and step by step. Home exercises, rest, ice, compression and elevation. Also regular anti-inflammatory meds, and a delicious mug of Turmeric-Ginger tea!

I’m not particularly happy with my knee at the moment, but trying not to let it color my world. There’s lots worse going on to other people in my life. I’ll be thankful for the healing process, however slow it seems, and for a doctor that listened  to me. I’m hopeful we can push the bionic knee option way way way down the road.

For my own frustration level, well… I’m human. I’m learning what to crank about and what to let flow on and away. And that’s a slow, up and down process, too.

A note to all of you health care folks out there… if you want “buy in” by your patient to a new health care routine, you have to communicate! It’s something that we do in hospice all the time, and we find it makes all the difference. Teaching and re-teaching. Taking the time to answer questions and teach new skills. It’s hard to find the time because of the way that physicians are reimbursed by our current healthcare model (and I know that). But for this doctor, today… I am very thankful.

 

Reflections on Rehab

Deb

bannister
Photo Credit: Kate Ter Haar, via Wylio

I blogged recently about my feat of great UNcoordination, and tearing my medial meniscus. How I learned to stop trying to “walk it off” and actually get medical attention.

I know. Radical.

Well, the lesson has been a slow (and yes, painful) process of learning to listen.

Listen to my body.
Listen to my pain threshold.
Listen to the instructions on when to take my medications.
Listen to the Spirit as I make decisions about when and where I will spend my energy and my time.

I’ve had to keep my sense of humor. Me and my #achybreakyknee are making progress as I follow through on my home exercises. (And a HUGE shout out to Sport and Spine Rehab of Rockville for caring about my rehab and treatment as much as their care of pro athletes and fitness buffs!)

But there’s something else I’ve realized in a personal way, a reality that anyone with a chronic health condition already knows. (And I’ve been slow on the uptake!) It’s simply this: Being healthy is a lot cheaper than being sick. Doctor’s appointments, co-pays, medical equipment, prescriptions, procedures… it all adds up!

I am grateful for good health insurance that covers a lot of the cost of my care. But it is expensive. It eats into the little bits of extra cash that we might spend on “fun” things. An office visit co-pay is the cost of going out for dinner (a cheap dinner, mind you.) The cost of a prescription would fill my car with gasoline. And so it goes.

People with chronic illnesses have to count the cost, in every way: in time, money, physical activity and emotional energy. We lose patience with people who offer platitudes. (Seriously. “I’m praying for you” means nothing unless your prayers are sincere and tuned in to my current state.) It bears repeating that chronic illnesses are not  usually the fault of the person who has them. Genes, environmental factors, access to care, and sometimes, dumb luck may mean that one person has a chronic condition, and one person does not. A simple tumble on my patio resulted in my injury. Imagine what I might be going through if the incident had been a car accident or on-the-job injury!

In the midst of all of my personal challenges, which are minimal compared to the issues that many of my patients and their families face, I know God is present. I know the love of the Divine. I know the gifts of humor, of self-care, of compassionate Presence, of close friends and advisors who ‘get me’. I feel God’s mercy every day.

And I also know that there are many who struggle alone. And if I were Empress of the Universe, I’d fix that.

For now, I’ll settle for electing officials who want every citizen to receive high quality and affordable health care. That means I’m a caring person who would not wish others to suffer when there are treatments, physicians, therapists, prescriptions, and rehab options available to them — if only they had access through affordable and comprehensive health insurance.

I’ll keep advocating for all of us. Because — you are beloved. And so am I. And we are worth it.

Holding in the brokenness

Deb

By request: Trigger warnings for sexual assault and harassment.

2013-09-09 12.46.13

It happens in an instant. The moment gets replayed, again and again. You learn to shut off the cycle, to get help to process the anger and embarrassment, to feel safe.

But the bottom line is that it never should have happened. Never. You did not deserve it. You did not cause it to happen. 

There are ways to re-glue your brokenness. There are ways to disguise the cracks, the signs of repair. But you will always know they are there. You will forget them for longer and longer periods of time. You will still have a kick in the gut when you remember.

It’s OK. It will be OK. 

You tell people you trust. Really trust. It’s hard. And you learn you can trust people to support you.

But then… You tell people you shouldn’t have trusted. And they accuse or shift blame to you. Sometimes, without your permission, they tell other people. And you feel the cracks again. And you grit your teeth and pursue healing. Again.

Sexual assault is real.

Sexual harassment is real.

Sexual microagressions are real. 

If you are reading this and have a burden of brokenness too big to carry on your own, please find support, get an ally, or look for help. You are worth it. You are loved. You are lovable always, forever, completely, as you are, as you will be.

There are many pastors, counselors and friends who will stand with you. They will listen. They will believe you. They will provide tissues (when you need them) and a strong shoulder (when you need that, too). I am one of them, or I will try to be. But there are many, many more…

It’s OK to be broken, by the way. It’s OK to have “a history” that makes others sad or uncomfortable. It’s more than OK to not have things all figured out (the “why me” moments are raw and real.) It’s also OK to have that brokenness out there, untended, wild and raw. It’s OK not to have your hurt “fixed” or “held in.” I’m not suggesting that’s your goal. And people will try to shush you. Don’t. Speak up. 

One last thing. You do not have to tell your story to everyone who asks. You can simply say #MeToo (full stop).

Please take care of you. You’re the only You we’ve got.

LINKS and HELPS

There are many, MANY links out there. Too many. Here’s four sites that I trust, and I think that you can, too.

 

Healthcare: Who will pay?

Deb

mhBLxSaOver at RevGalBlogPals I wrote a thing… you can find it here (but here’s a sample…)

Without subsidies, they will not be able to afford to keep him at home. His daughter shrugged and said that it will end up costing the government more to put him in a nursing home, because he has no financial resources. “What’s the sense in that?” she asks me. “If we keep him at home, it will cost one-third to a half of the monthly cost of a facility.”

I appreciate your taking the time to read and reflect on this with me.

It’s a Wrap.

Deb

TEETH
THE CUISINE! Clockwise from left: Nutella peanut butter banana shake; lunch quartet (applesauce, rhubarb and pudding); milk toast; scrambled eggs; mashed potatoes.

It’s a wrap. Not my first choice, but a necessity. My wisdom teeth are gone, and my mouth is beginning to forgive me. At least I can eat real food now! Carefully, mind you. And nothing too chewy.

I realized mid-week that there were some lessons in this for me. I work with critically ill and imminently dying patients every day. What could I learn as I coped with recuperation, physical discomfort, instructions and medications from my dentist, and patience with the healing process? Where did I gain some insight into my work as a chaplain?

Here’s what I learned about myself as a patient:

  • I really don’t like being sick. (I’ve had patients who seem to glory in being ill.)
  • I appreciate help, but not smothering. Two thumbs up to my family. 😉
  • I have a limit on how much soft stuff I can eat. Texture, smell, CRUNCH are important aspects of my diet. I have a much greater empathy for patients on restricted diets!!
  • Prayers and reassurance make all the difference. I am so grateful for my family, friends, and church family.
  • I’m looking forward to fresh vegetables, salads and chewing!
  • I am fortunate to have health insurance and sick days.
  • I don’t want to take my health for granted. Ever.

Here’s to learning in every situation… and being grateful.

P.S. In case you wondered: The chaplain is a chicken. I had all kinds of dread and angst. I am SOOOOO glad it’s almost over!