Forgive me, Father, for I Have Sinned (or something…I’m not sure what exactly)

Before I confess, let me share with you why I need to do so:

  • 117 million debilitating illness bed ecardpeople (or 1/2 of all adults) in the US have a chronic disease.
  • Seven of the top ten causes of death are due to chronic disease.
  • Two of these top ten causes are heart disease and cancer.
  • Arthritis is the most common cause of disability.
Source: CDC

According to one politician’s statement, it appears that those of us with chronic illnesses are getting what we deserve and we will have to pay the price. The insurance price, that is.

According to Congressman Mo Brooks,  “…an amendment to the GOP’s American Health Care Act would require sicker people to pay more in insurance costs than people “who lead good lives.” He goes on to say, “My understanding is that it will allow insurance companies to require people who have higher health care costs to contribute more to the insurance pool that helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, you know, they are doing the things to keep their bodies healthy,” the Alabama Republican argued. “And right now, those are the people who have done things the right way that are seeing their costs skyrocketing.”

House Continues To Work On Spending Bill As Gov't Shutdown Looms

It’s important to note that in the same CNN interview, Brooks went on to say some Americans have pre-existing conditions “through no fault of their own.” It’s a welcome concession, to be sure. But the Republican congressman added that it’s a “challenge” to determine how the system should try to help those people, and that’ll be something policymakers may have to work on “over the years … as we go forward.” – Steve Benen, MSNBC.com

So there you have it. US Representative Mo Brooks thinks that the chronically ill have

GOT repent

“Repent!” saith G.R.R.Martin

brought it on ourselves. If we extrapolate, does that mean 1/2 of all US adults live “badly”? What does it say about our society if nearly a majority of us are health sinners?  Does he not identify with anyone who is chronically ill? I mean, does he think that just because he eats healthy, gets plenty of rest and exercise, that he will never get sick? I have one very impolite word for him, then: Sucker! We all thought the same way until the universe taught us a lesson. Or three. While I have a smidgen of compassion for his arrogance (and hope for his eventual enlightenment), I will not forgive him if he keeps blaming the chronically ill for being sick.

 

 

Sure, we could all live a little healthier and, yes, some health issues are made worse by poor lifestyle choices. But for every one sufferer I know who makes bad choices, I know at least 20 who are fighting the good fight. This includes children diagnosed with diabetes or pediatric rheumatoid arthritis, athletes who have asthma, elders with COPD and pacemakers, kidney recipients, epileptics and survivors/fighters of cerebral palsy, dementia, polio, AIDS and cancer.

Do we take Rep. Brooks at face value?  If he’s right, then we should confess, repent (!) and ask for forgiveness in the hope of getting well, or at least getting reasonably priced healthcare. So, here I go:

Forgive me, Father, for I have sinned. My last confession was too long ago. I’m a married woman now, with grown children and a long career behind me. I’ve earned three college degrees and have still found myself subject to human frailties. Since I became chronically ill, I’ve learned to get up every morning and make the most of each day, but I’m still sinning.

  1. I talked back to my parents (and probably every other authority figure I met; my apologies to my parents, all of my teachers and all of my bosses, especially Stankey).
  2. I was, and still am, too stubborn for my own good. (Those listed above will act as my reference, especially JTS.)
  3. I didn’t listen when the love of my life wanted to talk about the most recent Manchester United match, again. (Seriously. US football widows got nuthin’ on EPL widows…. the EPL season starts in August and ends in May, and that doesn’t count the Euro and Championship Cups or the World Cup or the Olympics, it’s world football all year round. Is it no wonder I have hobbies?)
  4. I made my kids eat their vegetables. Oh, wait, that’s a lie. Their father made them eat their vegetables while I skipped right to dessert. Sinner!
  5. I fib (see item 4), but only occasionally, and not very well. See? I couldn’t even lie long enough to write #4…..
  6. I walked every where I could, until I couldn’t. This included when coworkers wanted to cab over to a meeting at the FCC or at least take the Metro. I didn’t listen when they complained of the walk, the humidity and their suffering.
  7. I danced too often and enjoyed far too much physical activity (weightlifting, dancing, kickboxing, dancing, cycling, dancing, running, dancing, ice skating, dancing, paddle boarding, and, finally, uhhhh, more dancing….)
  8. I played golf badly, I wasn’t even good enough to list it as a physical activity.
  9. I bought too much yarn. Repeatedly. (I’m not really sorry about this, though, so send me to perdition if you need to. I’ll be fine, I have my knitting. )
  10. I was a vegetarian in a land of cattle ranchers, and am too stubborn to change my eating habits despite the jokes and the “crunchy” nicknames, see item #2.
  11. I gambled that one time in college when Vic talked me into spending a whole roll of nickels on a slot machine. Although, we did manage to feed everyone with our winnings. Redemption?
  12. I brushed my teeth twice a day but may have only flossed in the mornings.
  13. I enjoyed alcohol but maybe not enough? (If you spent a week with me at CES you know I’m guilty for drinking one whole drink over the space of a week. Maybe I should ask forgiveness for wasting most of every pour? Waste not, want not.)
  14. When I first got sick, I listened to too many doctors as they tried to figure out why my body started hating itself (autoimmune sufferers all know that haters gonna hate). I only tried to leave the hospital once against medical advice and I returned to my room when they chased me down in the parking lot. I’m stubborn but I do eventually listen, so maybe there’s hope.
  15. I rarely took any medication and then I got sick; then I took every medication prescribed and only as prescribed. Every pill taker learns to be obsessively organized about medication. It’s a gift, really. Crud! Pride goeth before a fall…that leads me to my final confession.
  16. I’m probably too proud. Too proud of my kids, my hubby, my friends, my family and my community. I think we rock. If I met you, I’d probably think you rock, too. But I’ll only think you rock if you don’t condemn the rest of us for being human, if you don’t practice compassion, and if you don’t think before you assume the worst of us. Because you know what happens when you assume, right? I might be ill but I’m not an ass.  You’ll have to wear that title by yourself.

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If you feel strongly about health care and ensuring coverage for all, call or write (or both!) your elected representatives. Let them know what matters to you so they can make informed decisions.

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Opening Doors

          If you want to welcome someone in, you open the door, don’t you? If you manage or own a business, you want to make it easy for them to enter, right? “Accessible doors welcome everyone.”

Push to Open

 

            Like many folks with mobility challenges, I struggle with doors. Why? I rely on physically stable things (like walls, tables and chairs) to hold onto when I’m walking. I’m mostly stable but appreciate a little assistance because I’d rather not fall over J. Doors are a challenge because they are in motion and I can’t rely on them for stability while I navigate my way through them. Heavy doors? I almost always need help. Not only do I have to focus a little harder on my own stability, I have to do it while pushing or pulling harder, which often puts additional pressure on my knees, hips, shoulders and sometimes causes a muscle spasm. Imagine having a door shut on you while you’re dealing with a spasm…Painful and inelegant, humbling in private and kind of embarrassing in public.

            There’s a reason the ADA (Americans with Disabilities Act) includes requirements for doors: they provide access to a business. “Businesses or buildings that are open or offer services to the general public are called  “places of public accommodation” by the ADA. Places of public accommodation and buildings constructed by state or local governments must be fully accessible to people with disabilities if built after January 26, 1992.”

Heavy Door Sign

            Force is one of the many characteristics that are included in the door requirements, limiting door force to 5 lb, which is about the maximum that some of us can handle. Unfortunately, some doors require as much as 10 lbs of force. That’s why you see the “Push to Open” buttons with a wheelchair figure on them. These buttons are there to make sure the mobility challenged are welcomed into the business.

 

            Personally, I struggle with heavy doors. You know the type I’m talking about, where just getting the door to move is an accomplishment. I always appreciate being able to get in these doors since I often get stuck in them. If you’re that nearby stranger who steps into help, you have no idea how much I appreciate you, even if all we exchange is a “Let me get that for you”, and, “Thanks”.

 

After You

          Here’s why I’m writing: I use two sets of heavy doors twice a week to get to my Pilates sessions, which, ironically, are part of my physical therapy. For the second time in a year, the handicap buttons do not work, making it harder for me to get into class (and out, since I have to go through them again to get to the car).

image

I’ve asked regularly (more than four times over more than a month) to have them fixed, with no results. I have no idea if my requests have even made it to the general manager’s desk. It’s very likely he has a lot on his plate and has to prioritize repairs but I wish he could walk in my shoes.

I wish he could experience what it’s like to have to struggle with a door, including it closing on you.

I wish he understood that I don’t like repeatedly complaining to the front desk – nor do I think the front desk appreciates listening to me, especially since all they can do is tell me they’ll pass on my request.

I wish he had his physically able staff test the doors regularly so they know before I ask that the doors aren’t working.

I wish he either fixed the doors or at least called me to say they aren’t a priority so I know I matter even if he can’t get fix the doors.

I wish he would contact me so I could better understand his perspective.

On this 20th anniversary of the American with Disabilities Act, I’m thankful for the access it enables and I’m hopeful that those doors work properly the next time I try to enter.

Own It Sistah!

Happy Friday!

Does it feel like the week took forever? I’ve been struggling with fatigue and it seems like the days just don’t end. And yet, we all get up again the next morning and tackle whatever’s next (or what was left unfinished), right?

energy

I’m always in search of energy and passion because it’s contagious. Being around YOU helps me stay up (that pic above symbolizes the gift of energy y’all share….). But, after a week like this one, I can use a big dose of octane. For today’s fun, then, I picked a favorite song, Something’s Gotta Hold on Me. Originally by Etta James, it was covered by Christina Aguilera in the movie Burlesque and then Kimberly Nichole on this season of the Voice.

What I like about them?

Uhhh, first off…Etta James, hello? She’s the Queen Bee.

Then, Christina adds to it by showing how you should dance as if no one is watching.

Finally, Kimberly is a fireball of a performer. If you watch the show, you’ll know that she has a vibrant energy but gets nervous and tense. Here, she lets that go, and boy she looks like she owns the stage, especially when she grins.

These are all ways I want to live – I want to be original (Etta), dance like no one is watching (Christina) and really, really own my world (Kimberly).

Doesn’t that sound like way more fun than dragging yourself through your week?

Honey, I’m never gonna be a ballroom dancer, am I?

Do you have a dream? Do you fantasize about doing something? I hope so. I think dreaming keeps you young, it keeps you motivated and active. Dreaming enables you to do things that others may think are impossible. My dream right now is to get my dance on. On good days, I can’t not move, it’s almost impossible for me to sit still when music is going and I have zero inhibitions about bopping around where people can see me.

I grew up dancing. In college, I was infamous for going out with my gang and dancing all night long. I’d stay on the dance floor so long that my dance partners would rotate out, with the fresh legs bringing me a glass of water. I’ve danced tap, salsa, swing, jazz, contemporary, broadway, hula, belly, ballet and even a little hip hop. I’ve done formal performances and flash mobs. I used to teach and have choreographed high school and college musicals.

Along the way, though, I grew up and have had a corporate job for 25+ years so my dance has been limited to nights & weekends. For several years, I’ve been dreaming of taking up latin dance. I want to salsa, samba, tango and cha cha. But there are obstacles. My work schedule is challenging (I spend about 50% of my time on the road) and then there’s my strength. I have a complicated set of health problems, the kind that (in theory) won’t kill you but they suck the life out of you some days. Good days are somewhat unpredictable. I sometimes use up all my energy at work and physically crash when I get home.

I looked at my husband this morning (who does NOT dance, the one smudge on his sainthood) and said, “Honey, I’m not gonna be a ballroom dancer, am I?” He laughed and kept doing what he was doing. He’s used to me setting unrealistic goals and knows enough to get out of my way and let it play out. He’s watched as I’ve earned two graduate degrees, taken kickboxing, managed a Little League team, helmed the PTA, ridden a motorcycle and kept him company on the infamous Hotter than Hell cycling event. He’s my biggest fan even if he thinks I’m a nut. This time though, I think he’s known for awhile that my dance fantasy is up against the formidable unpredictability of my illnesses.

So now what? Do you just walk away from a dream? I’m not sure I know how to do that. Physical therapists and recreational dance teachers will tell you to keep going but modify. I remember taking a salsa-hiphop fusion class (think Pitbull music) and one of the other students was this little old lady. I kid you not, she had to have been 80 and she looked like someone who you’d see after church talking to the minister. But there she was, moving to her own groove, to Pitbull, no less. She couldn’t do many of the moves but she was full of joy. We all loved having her in class, especially us middle aged folks. It was clear the younguns didn’t understand the need to modify – their bodies could still do whatever they asked of them – but those of us who have seen the Coming Attractions of aging knew that this woman was dancing her heart out.

So here’s my modification – I’m still dreaming of latin dance. I’ll at least get up off the couch and move. I may never be anything worth watching but I’ll do what I can until I can’t.  I hope to be that little old lady in your class who’s getting her groove on.

Invisible illnesses

It’s been just over 11 years since I’ve started this journey. 

June 25, 2002 was the last day I felt normal. At first, I thought my headache was due to a long day at work. I had skipped lunch due to our schedule, plus I’d been really cold all day due to the air-conditioning in the building where I was working. I came home with a nasty headache that never went away. After visits to two dentists, a doctor and a fab-you-las oral surgeon, I was diagnosed with TMJ disorder. They couldn’t tell me why, but my jaw suddenly stopped working. They also couldn’t fix it. Best case, it might resolve itself and it might (or might not) do so in 5-7 years. Eleven years, four procedures and numerous prescriptions later, we’ve got it managed but only just. 

To look at me, you could hardly tell I was ill. About the only obvious sign was that I was thin.  Really, really thin. I went from a normal-ish size 8 to a honey-you-need-to-eat-sumthin size 4. For the average American woman, a drop from an 8 to a 4 is pretty dramatic. At my height (5’10”) and low weight (128 lbs), it was scary-skinny. Those people who say you can never be too thin don’t know what they’re talking about. One look at my arms and you could tell I didn’t have any meat left on me. As long as I was dressed in the right style, though, most people thought I was just, uhh, really, really fitness-oriented. The joke was on me though – I was skinny, definitely not fit.

Me and our boys, 2004.

Me and our boys, 2004. Lots of ice cream helped keep some weight on me. 

Oh, so where was I? Yeah, you mostly didn’t notice I was sick. I dressed well for work, which added to the illusion. So, what’s my point?  TMJ disorder is something called an invisible illness, where you can’t tell by looking at the person that they’re ill. This term is used a lot by folks who have Fibromyalgia, CFIDS (aka Chronic Fatigue), Gastroparesis and TMJ Disorder. How do I know this? Cause I’m one of them. These days, it’s more than my jaw that is messed up. Among other things, I have trouble walking long distances.

Does it matter that the person doesn’t look ill? Not always. Frankly, it’s nice to pass for normal so there’s something to be said for being invisible. However, let’s say I’m in the airport, my flight has been delayed and the gate keeps changing. Say you’re by yourself and your one hour layover at DFW is now 8 hours and the airline kept changing the gates. C36. C10. C22, C16. C35. To be fair, it wasn’t all on the airline; weather was causing problems. However, by hour 6, I was done. Every step I took was excruciating; it felt like the cartilage was gone in my ankles (fibro problems). Imagine me, dressed for work, leaning hard on the gate agent’s desk and asking for a wheel chair. I had to ask several times because she didn’t believe me even when I explained. I’m pretty sure she looked at me, corporate type, and saw what lots of folks see – middle aged woman, apparently in good shape, maybe tired. What she didn’t see? Invalid. Again, did it matter? In the moment, yeah. I already felt miserable and now, when I asked for help, I got nowhere. Fortunately, after  insisting on a wheelchair, she eventually got me one. Even better, the plane finally showed up and I made it to my own bed before sunrise. 

The moral of the story? Maybe there isn’t one. Or maybe the moral is that you never know who’s carrying an invisible burden, so pay attention. 

Never give up. Except when you need to.

Winston Churchill said “Never, never, never give up.” Nearly every athlete knows to keep going, even if you’re hurting. We’re told that we only have to want it bad enough. Soldiers call it “completing the mission” and it’s a wonderful thing, to be able to count on someone to get the job done. This translates to the non-military life, too – raise your hand if you work in an office and you’ve NOT heard “thanks for working late” or “we really need you on this” or “can you squeeze one more client in?” Yeah, that’s what I thought. No hands in the air. Me, too. I grew up in business thinking it was normal to work 12 hour days, travel on the weekends, sacrifice your sleep so the business kept going. I thought it was worth it. I had no idea, really.

But what happens when your body gives out on you? I’ll tell you. It’s humbling.

You learn more about yourself in that one moment than you care to. You learn that it’s not an excuse when your body refuses to cooperate.

You learn you’ve been judgmental about those who couldn’t keep up, thinking they were just making excuses.

You learn you’ve been ungrateful for not appreciating the good health you used to have.

You learn you’re not immortal, that your body is basically telling you the end might not be near but the preview trailer of coming attractions certainly is.

For me the silver lining is that I’ve found a a new sense of gratitude. I’m happier, although paying for it with a truckload of pain. I wouldn’t trade though, this place is usually more peaceful. I’m much more centered on what is important. My pride? Not important.

On my good days, I appreciate my family and friends more than I used to.

On my bad days, I really appreciate my family and friends. They’re the ones who help me over the hump until I can handle things myself and they put up with my crankiness. It doesn’t get any better than that. Love you, every one.

Do ya feel me?

When was the last time you did something you didn’t want to? Probably recently, right? Us grown ups have to do things we don’t like all the time. I don’t feel so happy right now and I’m having to remind myself that it doesn’t matter if I don’t want to get back on a plane. I can even hear a voice in my head (yeah, just one today…hush) saying, “I doan wanna go! I doan wanna go!”. You can even hear the whine in my voice if you listen closely.

Here’s the deal. I’ve had a coupla weeks at home (no travel) but yesterday I could barely walk (stiffness), I’ve not been able to eat properly the last week and my nerves are literally shot. One of my most annoying symptoms is something called allodynia, which basically means I feel pain on my skin when I shouldn’t. Understanding what it feels like is easy – I burn, I tingle, I hurt. For you to get it, though, you have to have lived through it. Not even my sainted husband can really get it. And he loves me. You, nice stranger that you are, can only take it on faith that I’m not just whining.

So, today’s sermon is about taking it on faith that what I feel is. What. I. Feel. Something about our culture makes us all so skeptical, that it can’t be real unless we individually or an expert has deemed it so, right? I’m not pointing fingers; I’m just as quick to want to evaluate things before I accept them. But on this one thing – accepting what people describe about their wellbeing – I need y’all to just believe. There is nothing so isolating as when you don’t accept me. (This is a universal truth, BTW, not just something that affects chronically ill folks.) There is nothing so loving as simply accepting  what I tell you.

Think about it.

1. I share what’s going on with me, cause I’m just real that way. Mind you, I don’t over-share (that’s what this blog is for ;).

2. You either make a comment or give me a “uh-huh, yeah, right” kind of look that says you don’t believe me or think I’m whining or slacking or…or.. or.. or.. (you fill in the blanks)

3. I get that you don’t get it and, worse, you don’t get me, and I stop sharing with you.

What kind of relationship is that? What does it say about us if you don’t accept me and, worse, think I might be making it up? I recently had a very nice man ask me if I thought fibro was real. He implied (with a hand motion) that it might be all in my head. Like I said, he’s a very nice man, not the kind of guy who would think you’ve lost your marbles if you said, for example, that you were hungry. He might, in fact ask if you needed something to eat. Can you imagine how he’d feel if I stopped sharing. We wouldn’t be friends anymore cause that’s not how friends act.

And I think that would be a shame.

Next time your loved one or friend share that they are feeling a certain way, take it on faith. Ask them how you can help. Give them a hug, help them with their load. Make them laugh. Tell them you love them. Just don’t judge.

Alrighty – I’m off my high horse. Back to your regular programming. 🙂