WONDER WOMAN!

I don't know if it's the regular excercise I've accomplished playing Wii tennis, sleeping unbelievably well (with a little help from a prescription...and the exercise), or being in the sunshine, but today I felt like a new person. I slept in and slept HARD until 9:30 this morning, something I don't recall doing since Katie was born. Maybe that's a slight exaggeration. When I awoke I felt refreshed rather than my usual slept-on-a-corncob-mattress-after-being-heavily-sedated morning feeling.

As a result of this unexpected energy, I bought groceries. When I arrived home I cleaned the strawberries, peeled and chopped the cucumber, prepared the canteloupe, then cleaned out the refrigerator to make room for the groceries, which I unloaded and put away. I know most women do that much every day, but that amount of work usually takes me two days and help from my family.

And that's not all. After I ate lunch, I cleaned up the kitchen and still had energy. Again, nothing for the average woman, but I felt like WONDER WOMAN!

Maybe Wonder Woman with a Komperdell cane and a Hoveround, but still WONDER WOMAN.

And that is still not all. Next I washed the Tahoe, Armoralled the running boards, scrubbed the raised-white-lettering on the tires with Comet, cleaned the insides of the Tahoe doors and wiped the entire vehicle dry. I even washed the windows.

Finally, I came inside to kick Carl's butt at Wii tennis. Actually, we're well-matched, so we both won a few matches. Afterwards I took a hot, soaking bath and crawled into bed with my computer to write, after which I hope for another deep sleep.

Today I glimpsed a bit of the girl who has been taken by RA. I miss her. I love her. I hope she comes around more often.

Tuesday Tranquility Teamed with Gratitude

My Tranquil Tuesdays™ conclude just after my Tuesday babysitter, C, graduates from high school on May 17. She has agreed to babysit for two more Tuesdays, after which she goes on a 3-week tour of the U.S. with the singing group Highest Praise. She has other obligations after touring, then she begins her college career. Has it really been more than twenty years since since I viewed life from that perspective?

C began babysitting when Sheri and I decided to take a Creative Writing course together at the local community college. The class met Tuesday nights and jump-started my friendship with Sheri. After the college class ended, I kept C so that I could also keep my sanity. I home schooled at the time and desperately needed a slice of time to call my own. Now that the girls are in public school, the desperation has receded. I may or may not try to replace C. We'll see how the summer goes.

Tonight I'm spending one of my final Tranquil Tuesdays™ at the library with Van Morrison's Moondance playing through my Bose headphones on my laptop.

We were born before the wind
Also younger than the sun
Ere the bonnie boat was won as we sailed into the mystic
Hark, now hear the sailors cry
Smell the sea and feel the sky
Let your soul and spirit fly into the mystic.

I'm experiencing extreme nostalgia at the moment, feeling very lucky, very blessed. I spent so much self-pity this past winter that, hopefully, the account is dry and replaced by a Gratitude Fund. Moondance takes me back to my dating days with Carl. As a partner in a car stereo company, he had a rockin' sound system (very important in my early twenties). We would crank Van Morrison, smoke a little and head to the lake for a weekend of water skiing, sun and crazy fun with friends. Or maybe to Tahlequah, Oklahoma with our dog, Colonel, to canoe down the Illinois river and camp in a tent alone.






Evenings like this help me to regain perspective, to refresh my point of view. I'm not the first to look in the mirror and realize that the person in the reflection does not resemble the spirit behind the face. My body has aged faster than most, but in my mind's eye I am still the same.

My soul becomes younger every time I appreciate my blessings, so I am spending this moment enumerating my blessings:

1. My dad and his new wife spent a week in southeast Kansas so that they could help me repaint my sad, sad kitchen cupboards and walls. This was prior to my blog, so it didn't live here in infamy. (Maybe I will dig out photos and post them for posterity.)


2. My mom has contributed more to the beauty of my home through her painting and sewing skills than I have with my skills. (Why didn't you pass on that gene, Mom???)


3. I didn't marry R. (OK, this is WAY out of chronological order, but I'm going with chain of thought here.)


4. I DID marry Carl. He pushes all my buttons, but sometimes that's a good thing.


5. Dave and Matt helped with the Building Project just when we needed it.


6. My sister married someone who earned an engineering degree and is a partner in a major Heating and Air company (just when we needed heat and air...thanks Ash & Ed).


7. Just so you know, my sister has a degree of her own and chose to spend her education on her family.


8. Liz began cleaning my house years ago and has become one of my best friends and my counsellor. I joke that I should really be paying her $120 per hour when she's here to clean.


9. C has been a splendid babysitter.


10. Sheri asked me to take that Creative Writing class with her, and later invited me to visit her sister in Pompano Beach, Florida with her...and all the fun in between and since.


11. I have new landscaping that is as beautiful as some I've seen in magazines for small yards...in my humble opinion.


12. I moved to this small town as a complete stranger just over ten years ago and now I would struggle mightily with a decision to move "back home."

I could--most definitely--add to this list, but you get the idea. I'm ever so slowly recognizing that my life is what I look at. I could (and have) looked at my body, that is crippled by rheumatoid arthritis; at my daughter who has a congenital brain defect; at every little--and big--negative element of my life. In fact, my daughter-with-a-congenital-brain-defect is this moment screaming in her sleep, distracting me as I type. Nevertheless, much of my life is determined by what I look at. Yes, I know my sentence is grammatically incorrect, but my intention is spot-on.

I'm hoping I can continue Tranquil Tuesdays™ partially by focusing on gratitude. It sounds lofty, even a little out of my reach. But as summer awaits, I'll keep that as my intention.

I just hope my summer intentions prove more fruitful than those at Christmas.

My Road to Health

Friday's appointment with my doctor in Tulsa went very well. Although I didn't see him until one hour after my scheduled appointment time, he took me seriously and spent quality time with me. He agreed to the Antibiotic Protocol (AP) and even ordered Minocin at my request, even though he recommended doxycycline. When I told him I had "broken up with my rheumatologist," he wrote a replacement prescription for my prednisone and didn't criticize me for the difficulty I have had in lowering it's dose. He recommended some vitamins and herbs, which lifts him up a notch in my esteem; our bodies need more than man-made chemicals whirling through them. When I requested another blood test that he thought was unnecessary, he still agreed to it. Finally, I'm on a path that will lead to the road I think I should be traveling.

Bottom line: Dr. B. considers himself the "coach" in my health care, while I'm the "team captain." That's exactly what I want. Some people want their doctor to tell them exactly what to do so that they can follow a series of suggested steps with minimal (if any) study or research. The doctor knows best. Not me. I spend hours, days, weeks reading books and scanning the Internet. I make my well-known lists and answer my own questions. By the time I finally see a doctor, I know the route I want to take. I want the doctor to consider that route and give me insight, not dismiss my extensive research.

The rheumatologists I've seen dismiss AP. They only want to prescribe strong medications that knock out my immune system while they gloss over the fact that those same drugs greatly increase my chance of cancer and death. I'm glad to find a doctor who will consider a different route, even if I have to travel two hours to see him.

In all this posturing about my medical decision-making prowess, I recognize that my decisions have not, to this point, led to health. My mobility is severely limited and my stamina is stuck at an all-time low. Somehow over the next year I hope to find a crossroad between idealism and realism. I'm hoping and praying that this new road will be the road back: back to vitality, movement and spark; to living instead of merely surviving.

I Was There

When Carl and I met, I had already been diagnosed with rheumatoid arthritis. However, I had very little deformity and still retained mobility and independence. In fact, we snow skied together in the Colorado Rockies, canoed down the Tallequah River in Oklahoma, camped in many locations and often water skied in the summertime. We shared long conversations about arthritis and it's crippling effects and he witnessed personally how it drained me of energy. He often said things like, "I'll push you in a wheelchair until I can't push you any more if I need to." But he's never needed to.

Until yesterday. While in Wichita the girls suggested a trip to the zoo with Carl's super-healthy sister and her children. Not anticipating this request, I left my power wheelchair at home. Lately walking to do my normal activities has become difficult. Walking through the zoo for hours would be impossible, especially at the pace I knew my children and sister-in-law would require. Because the zoo did not have power wheelchairs for rent, I had two choices. 1. Skip the zoo, or 2. Allow Carl to push me in a rented wheelchair.

Though my decision needed to be made hastily, I knew it would set the standard for future outings. If I sacrificed my involvement that day, others would be more likely to expect me to sacrifice at a later date and I would more easily excuse myself from participation. Knowing this, I joined my family at the zoo.

We had a great time. Hannah commented about the eh-na-nas (rhymed with bananas, but meant "elephants"), the ze-buhs (zebras), and especially the tuh-tuhs (turtles), complete with sign language. We saw an iridescent blue peacock, trekked through a humid rainforest smelling of moisture and earth, and walked by tulips, daffodils and redbud trees in full bloom. At one point we stopped to buy snow cones for the kids and to pour ourselves a beer that we snuck in in the cooler.

I learned that there is no "cool" way to sit in a wheelchair. I tried resting my head on my hand, crossing my legs, sitting with my legs pointed out, leaning back. Nothing. Kids stared at me, people held doors open for me and at one point Carl rammed me into a lady's baby stroller.

But I was there. I was there when Hailey said, "Mom, that zebra was riding the other zebra." I was there when Hannah said, "Oh my DOSH! (Oh my gosh!)" over and over. I was there to observe all of my girls' laughing and running free, sunburn-cheeked with hair flying behind them. I was not sitting at home waiting for pictures and a synopsis of the day. I was not waiting behind and depriving my girls of a day with the only mom they'll ever have, disability or no.

And I was there when Carl leaned over the back of the wheelchair to kiss my neck as we stopped near a lilac bush. How many women are loved so unconditionally?

Spring Cleaning My Yard...And My Attitude

Yesterday the sun shone, for the last time this week according to the weatherman, so I charged my electric chair (OK-"battery-powered wheelchair"...but "electric chair" sounds less old fogey); gathered the troops (Katie and Hailey); accumulated rakes, giant black plastic trash bags and clippers; and zipped out to the front yard for some spring cleaning.

The view from my front window is one of the ugliest in town: combines, tractors, rusted machinery and trees choked by sumac vines in the lot across the street. But I love my east-facing front yard. Especially in spring. I enjoy cutting back the fountain grasses to make room for fresh growth. I get pleasure from raking the dead leaves out of my flower beds, smelling the moist dirt beneath, finding daisies sprouting in unexpected places. Every year two lone tulips and a purple hyacinth bloom, though I didn't plant them. Last fall I salvaged one stick from a neighbor's overlooked lilac bush and transplanted it in one of my raised "holding beds" just around the southeast corner of the house, unsure if it would survive my inexperience. It not only developed green leaves, but one bunch of lilac buds promises to bloom under my bedroom window in the next month.

The holding beds contain an odd assortment of plants waiting for the day I officially landscape my yard, something I've been intending to do for years now. I don't recall everything I've placed in the beds and anticipate the surprise I'll feel when I find the first green of the forgotten plants.

As I write this, I realize that my yard reflects my life. I had great plans for it, but those plans have yet to be realized...if ever. I expected to plant fescue and spread a weed-killing fertilizer every year for the manicured effect. But if I had done that, I would have lost the opportunity to enjoy the wild grape hyacinths and the white clover flowers that bloom in scattered patches. I mapped out flower beds with grand arches and a specific arrangement of annuals, perennials and grasses. In the same way I planned a life based around a healthy body and children, never even considering rheumatoid arthritis, blissfully unaware of "Dandy-Walker." Reality rerouted all of those plans. I used to resent that. Some days I still do.

But yesterday I understood that different plans had been made for me and I glimpsed their beauty. For a moment I felt thankful for an imperfect lawn, for my unrealized dreams. Because I felt less attachment to a certain outcome, I appreciated Katie's and Hailey's sometimes silly contributions. Since flowers bloomed wildly in my yard instead of fescue, I've received at least a dozen bouquets already, delivered by grubby Hannah hands as well as by young ladies simultaneously desiring their mother's approval and detachment. In the same way arthritis and Dandy-Walker have given me a different perspective, a strangely pretty one.

This isn't the yard I've planned. This isn't the life I've planned. But if I look closely and cultivate gratitude, I find an unanticipated magnificence in it's plainness.

My New Blog

I have started a second blog, The Rheumatoid Factor (http://therheumatoidfactor.blogspot.com), which is devoted to life with chronic illness. I will primarily dedicate this blog, Never A Dull Moment, to parenting and family life...especially as it pertains to living with Hannah Savannah, my Dandy-Walker girl.

I've included a link to The Rheumatoid Factor in my list of links to the right. Today I have posted at The Rheumatoid Factor, and am notifying you of that post here. I won't make a habit of creating "notification posts," but wanted to do it this one time as a sort of kick-off.

Have a great weekend! Spring is almost here!!! Be sure to scroll down and read yesterday's post...if you haven't already.

Improvements in Wienerdom

I posted my Blues Busters intentions earlier this week, suspicious of my own accountability. After all, I'd come up with some good ideas, right? I'd shown that I knew the right thing to do. Right?

I've recently had a revelation about myself, about which I've already posted, but will repeat: I feel a sense of accomplishment and completion from learning and knowing, from my ability to find information and to share it with others. Therein I have helped someone. Call me Mother Teresa. Disseminating ideas doesn't heal my hip or alleviate insomnia, though. Therein lies the rub. (Does anyone know where that quote originated?)

This time, though, I've pushed past propagation and through to performance. For three whole days! For three days I have arm cycled for thirty minutes! I've taken my Omega-3s two days (forgot yesterday), and purchased spring bulbs to enjoy since Tuesday. Oops--I forgot my happy light, though I took in some real rays before this nasty weather hit.

Results? Even after only three days, I feel improvement! I'm sincerely surprised. Because I couldn't arm cycle rapidly enough yet to raise my heart rate without causing pain to my elbow joints, I didn't expect much. I expected wrong. My mood is slightly elevated. Nothing drastic, but considering this is the "time" when I'm typically ripping off heads and struggling not to behave maniacally, I'll take it.

Added bonus: SLEEP! I've slept seven straight hours, then even fallen back to sleep for two more at one point. Hallelujah! I almost feel (gasp) refreshed in the morning. Almost. Let's not get carried away, here.

Compared to other BlogHer Health blogs in which women are training for triathlons or expressing their desire to be on American Gladiator, I'm a wiener...but I'm an improving wiener!

And today is FEBRUARY! (jig dancing here)

The Rheumatoid Factor: Hands

I've cheated by posting this on Monday, then changing the post day for my poem to Tuesday because, while I'm striving towards the acceptance I mention in this blog, I still haven't achieved enough of it to be comfortable having these pictures at the top of the page.

These are my hands, my thirty-nine year old hands. They are the part of my body about which I am the most self-conscious, the most uncomfortable. I think I'm even more uncomfortable about my hands than I am my cellulite-covered thighs. I've earned the thighs. I didn't earn this.

I need to make peace with my body, a body that has betrayed me, a body that has let me down. You would think that after 20+ years I would have "accepted" the fact that I have arthritis, but that's not the case. Now I need to apply a lesson I've learned in other aspects of my life: acceptance does not equal approval. Posting these pictures, treating myself to acrylic nails (did you notice those gorgeous nails, by the way???) are small steps towards accepting that this is my life, this is part of me. Yet, while I accept it, I can still say it unequivocally sucks.

I imagine that women feel the way I'm feeling right now when they take "before" diet photos: exposed and ugly. And these are my "after" photos!

So...here are my hands. Aesthetically, they flop. Yet, these hands have held my crying babies, have tied thousands of shoes and have wrapped their share of presents. These hands have planted flowers in the spring, chopped vegetables for countless meals and have, yes, spanked a few bottoms. They once played the piano, now they tap the computer keys for creative outlet. You don't want to know how many butts they've wiped (notice how I separated that sentence from the vegetable-preparation sentence).

I anticipate that my struggle to accept will continue for the rest of my life. Most of us have that part of ourselves that isn't wrong, it's just not, well, pretty. Maybe it was physically damaged in an accident or maybe it's more of a difficult personality trait. Whatever it is, sometimes it helps to take a big photograph of it, look closely and finally decide...OK.

For today, it really is OK.

The Rheumatoid Factor: Pros & Cons of Chronic Illness

First, a little point of information: Most people with rheumatoid arthritis are given a blood test, one of MANY, to see if they test positive for a "rheumatoid factor." Hence, the name of my supposedly-on-Mondays posts...and here it is Thursday.


THE PROS:

1. Handicap parking...especially during the holidays

2. People's expectations of me are lower

3. I have a legitimate excuse for just about anything



THE CONS:

1. Pain, fatigue, brain fog...and did I mention pain?

2. I feel particularly vulnerable in icy weather

3. People's expectations of me are lower


That's it for today...soooo much to do (I'm sure I'm the only one): 5th grade Christmas party, rewrite everything on my calendar that has been rescheduled due to ice storm (preferably before brain fog erases it from brain), plan supper (read: plan pizza order), buy last-minute Christmas gifts, reinstall ALL my software onto my now-blank hard drive, Thursday piano lessons, deposit birthday checks from September,...

FIRST, though: ensure all ingredients are available for killer margaritas.

Monday: The Rheumatoid Factor

I'm going to try something new. Every Monday I will post about some aspect of having rheumatoid arthritis. Today I'd like to share with you how it all began.

Oddly, I don't recall the year or even the season when I experienced my first symptoms. Did I have my first attack in the spring as the semester ended? Or did my flare while driving the combine during wheat harvest occur first? Maybe it started during the fall semester. One would think that something so life changing would have it's own birthday on my life calendar, but that isn't the case.

In 1988, while attending Fort Hays State University, I lived off-campus in the tiny one-bedroom house I rented. The idyllic location surrounded me with brick, tree-lined streets that lead to ivy-covered campus buildings. I made a group of good friends and together we played co-ed intramural water polo (well, I tried to play, but I had no idea what I was doing) and co-ed intramural softball, went out on weekends and generally enjoyed a freedom we didn't understand we had. I jogged regularly, ate lots of starches because that was the healthy way to eat at the time, and drank my share of beer on the weekends. I worked part-time and took classes full-time. Majoring in music and accounting, I was an above-average pianist who loved the absolute-right-or-wrong aspect of accounting. Until the arthritis.

At first I felt exhausted and ran a low-grade fever, like a mild case of the flu that never went away. I developed an odd plaque-like rash on the underside of my left arm so that the first doctor I sought was a dermatologist. He performed three separate biopsies that resulted in no specific diagnosis. Next, the top of each of my wrists puffed up as if a small finger of liquid rested just below the skin. They ached. I ached.

Did I mention exhaustion? Do you know the weak, fatigued feeling you get when you have the flu or a major infection? Suddenly, for no reason, I felt like that all the time. I slept hours and hours. I looked normal so my friends didn't understand why I suddenly became a sleeping hermit. I continued my normal working schedule at Wal-Mart, but by the end of a shift my feet and ankles were so swollen that I called them "Flinstone feet" after Fred Flinstone.

Originally an almost-straight-A student, I began sleeping through and failing my classes. Too tired to even fix myself simple meals, my weight dropped. My lowest point occurred when I stepped on the bathroom scales and discovered I weighed under 100 pounds. Realizing I couldn't take care of myself, I called my mom. She came the next day to move me back home. I quit my job without notice and flunked the entire semester of classes.

Reading back over this post, I realize it's a real downer. I've considered leaving it unpublished. I've considered making it lighter and injecting a little humor. Ultimately I've decided to do neither of those. Those dark days gave birth to compassion, patience, empathy, humility and a host of other traits I otherwise would not have. Don't misunderstand. I do not claim to have those traits in every area of my life. Ha! I can be screamingly impatient. I battle pride and a surplus of other character defects. Just ask my family.

I also know that my situation is far from the most difficult situation out there. Some women are losing the battle with cancer and living their last days with their loved ones; barring anything unforeseen I'll be around a while. Some women are facing chronic illnesses that have left them bedridden and unable to care for themselves or their families; I've been reading a woman's blog that tells her story of living with sarcoidosis. She spent the Thanksgiving holiday in the hospital and is now home, but in tremendous pain.

This point in the story marks the end of the beginning of my current life. Like all births is was painful and no matter how much a woman loves her resulting newborn, the truth is...it's ugly. Sometimes the baby is born with a defect that, at first glance, is unattractive. Hideous even. But a beauty emerges.

I hope to make my life beautiful.

Pacing Myself

Now that it's officially December, my thoughts and activities turn to Christmas. My mantra: Pace yourself, Angela...Pace yourself, Angela...Pace yourself, Angela.

Pacing myself has been my most difficult concept to grasp since the arthritis hit. My brain gets an idea and, other than brain fog, my brain is untouched by the arthritis. However, as my brain zooms forward with it's latest grand plan, my body hobbles along behind yelling with arms waving, "Hey! Wait for me! Slow down!" If my brain doesn't heed my body's demands, the outcome is predictable: CRASH! After a short time period of hyper-productivity, a fatigue-driven flare will settle into my joints and relegate me to the couch where I will helplessly watch my house and plans slowly deteriorate before my eyes. My family shoulders the brunt of this mistake: grouchy mom/wife (that's an understatement), fast food (if any food), no clean clothes, late bill payments...the works.

OK, maybe that's a little dramatic...but closer to the truth than I care to admit.

I have nineteen days to be prepared to leave town for the holidays (more holiday traveling). I issued my first edict to Katie and Hailey yesterday; one borne from eleven years of holiday lessons.

Before I tell you the edict, I want to lay the groundwork. Katie and Hailey are so close in age (16½ months apart--that was not planned) that they enjoy the same toys and the like. Couple that with the fact that they have seven aunts and two sets of generous grandparents and we have a "problem." It's a nice problem on the problem scale, but still a problem. TOO MUCH STUFF!!! And because they are so close in age, it's like a doublemint commercial: twice the fun.

Now for the edict, one I issued for the first time before Christmas of 2006: When we arrive back home from the Christmas holiday, they may not play with or use a single gift until they have given away or put away every single toy/item they own. This means broken items need to be tossed, unused or unloved items need to be donated and everything else must have a home...and be in that home.

Did you hear an unusual groaning sound yesterday afternoon at around 4:00 p.m. central time? It was the moaning, complaining and groaning of two Solomon adolescents. "Mo-om! That's not fair! We don't know where everything goes!"

"That's the point," I explained. I turned from them and could actually feel the eye-rolling vibe in the room. "You have twenty days before we leave for the holidays. If you do a little each day, you'll be able to finish easily." Do you see the "pace-yourself" theme here? They may not have been convinced, but they were forewarned.

I hope to help them with this endeavor, but did not offer that help verbally. At eleven and almost-ten years old, they are old enough to take care of their things...though they haven't been given the greatest role models. Nevertheless, I adhered to the edict last year and fully intend to do the same this year.

Escapist blogging does not equal pacing, so I'll hit "publish post" and get a few things done around here. I have plenty to do...but that's another topic.

Happy Holidays!

A Google Surprise

I had grand ideas when I started this blog. I primarily intended to compile stories from my life and the lives of my children, mainly for my children. However, I also secretly hoped in the back of my consciousness that maybe someone, somewhere who was struggling with rheumatoid arthritis or who was dealing with the daily ins and outs of a child with Dandy-Walker would stumble upon my blog and be encouraged. I had visions that someone would google "rheumatoid arthritis," find my blog, and feel less alienated. Or someone else might type in "Dandy-Walker" and see him- or herself on my page.

What is her point? You're probably asking. First of all, I'm not sure what it takes to be "Google-worthy" when it comes to a common entry like "rheumatoid arthritis." Whatever it is, I don't have it, and shouldn't given my blog is in it's infancy. Though, "Dandy-Walker Alliance" is new enough that this blog shows up on the second or third page.

My second and main point is this: Sitemeter has a nifty feature that allows me to see the words, if any, that people have Googled to get to my site. Gone are any delusions of grandeur that I even THOUGHT of having. Only a handful of people have googled their way onto my blog, and here is what they have entered:


podunk kansas


keaton tumor (I googled that myself...I'm not sure what they were looking for)



doctors are human beings



humira more:for_patients injection (do people really enter that many words?)



AND BY FAR THE MOST ENTERTAINING...



butt clap (I don't even want to know)


For now, I'll continue blogging because I truly take pleasure in it, because I enjoy accumulating anecdotes from my otherwise mundane days, and because it is something I can do regardless of how my body has decided to operate...or not operate, depending on the day.

Running Girl

Three days ago I spouted off about how I was going to implement some new habits. Well...I've eaten more fruits and vegetables, though still not five per day and I've been drinking my vitamin shakes.

However, thoughts of exercise have transformed me into a little lump of inertia. I still find it mentally challenging, if not downright impossible, to consider this exercising...





sit straight up, lift one knee up three or four inches off of chair, hold 3 seconds...

raise one or both arms as high as possible (one arm may help the other if needed)...

touch fingers to shoulders, palms towards you; turn palms down as you straighten elbows out to side

...when in my mind I still see myself as this:

I really did run a 5K at the Wichita River Festival...in 1988.

I'm reaching the year where I have had arthritis for the same length of life as not. I sincerely cannot recall how it felt to be healthy, except for a magical week after Hannah was born and the hormones...or something...gave me a respite. I keenly recall bouncing out of bed one morning and thinking, "Is this how people feel all the time???" My joints felt like they'd been given a healthy shot of WD-40, my energy level encouraged me to do something and crisp clarity replaced the brain fog that was and still is otherwise my persistent parasitical companion.

Denial is a poor substitute for self-care, but it's become my tendency nevertheless. At some irrational level I have convinced myself that if I pretend like I'm healthy and act like I have a normal life, I don't have to face "it." I can still picture myself as the running girl you see here as long as I don't look in a mirror. However, if I sit down to do the range-of-motion exercises pictured above, suddenly I am face-to-face with what I have become and the truth that I will never again be running girl.

So, I've kept running in my mind, as if the mental running could jog me away from this body.

Please don't mistake this for self-pity. I used to be good friends with self-pity, got to know her pretty well, and this isn't she. I called it denial above. Whatever it is, it's about as useful as self-pity, but a little more dangerous. At least with self-pity I was looking directly at life--the negative side of life for sure--but still real life. This running denial is the opposite.

Hmmm. I've got it now. It is, in reality, laziness coupled with a lot of mental mumbo jumbo. All I REALLY need to do is get up...then sit down...and lift one knee up three or four inches off of chair, hold 3 seconds...

New Hair Style

I have a hair appointment today at 5:30. Because I'm tired of my current style, I have looked through literally hundreds of styles on the internet in an attempt to find a fresh look for myself. Who knew there were so many choices? I've narrowed it down to the following. Does anyone have a favorite?


Is this picture small enough for you?



I have no idea how to make these larger...grab your bifocals!





This might be cute if you could see it. Though my hair used to be straight, it is now naturally curly. Straightening iron anyone???






Again with the straight hair. At least this woman looks more my age!





What is she, a fourteen year old giraffe? Cute hair, though. That would make me a 39-year-old trying to look like a 14-year-old giraffe, I guess.






Kinda flipped out...just like me on a typical day.








I did say that my hair is naturally curly. Whaddya think?




The perfect hair style for the morning after my Humira injection!







All these choices make me want to do this!




Those are the general ideas. I'd like something a little longer than what I've had. Mary, the gal who styles my hair, often has her own ideas. Oddly, I like that. I'm not that particular about my appearance & sometimes it's fun and easy to let Mary do her thing. I'll let you all know tomorrow...until then, leave a comment to tell me which style you like...if any.

No Hannah? No Way!

What if Hannah were never born?

I've joined a yahoogroup consisting of other people struggling with Dandy-Walker malformations of the brain. Some members are high-functioning adults with Dandy-Walker. They give me hope for Hannah. Others are parents of infants/toddlers/adolescents/every-conceivable-age-child with varying degrees of Dandy-Walker. The members who move me most, though, are those who have just been told their unborn child has a Dandy-Walker defect. Often their doctors recommend abortion.

I am fundamentally opposed to abortion and never would have considered it had I been told Hannah had Dandy-Walker in utero. However, I'm enough of a realist to believe that abortion will exist until the end of time, whether legal or not. According to several posts in my yahoogroup, these same doctors who have recommended aborting Dandy-Walker children have also had to admit that their diagnosis was wrong or greatly exaggerated. Yikes.

Doctors are human beings, just like you and I. Highly educated human beings to be sure, but still fallable human beings. They may have statistical information, years of practice and experience with ungodly amounts of book knowledge, but they do not have a crystal ball. They do not know the future and they cannot predict a miracle.

Most of all, they cannot measure the human spirit.

When I found out I was pregnant with Hannah--and this was WITHOUT knowing she would have Dandy-Walker--I bawled my eyes out. I don't cry easily. I could not imagine handling another child with the limitations I already had. But, as moms do, I grew into the idea and actually looked forward to Hannah's birth. She turned out to be an easy infant and a complete joy.

About two months into her life we discovered the Dandy-Walker. Upon receiving the information from her pediatrician, my first instinct was to call my husband and my mother. However, I waited. I knew that my reaction, whether calm, frightened or frenzied, would influence everyone else's reaction. I called people only after I had calmed down and decided I could and would handle this...hopefully "with the grace of a woman, and not the grief of a child" as an old poem goes.

I've learned that the human spirit is given the strength needed to handle any given situation...right when it is needed and rarely before. If I decide I can or can't handle something difficult based on the strength I have today, I probably can't handle it. But if I plow forward and trust (assuming this is something I am called to do), an unanticipated Strength materializes.

Back to my original question: What if Hannah were never born? What if someone had convinced me prior to her birth that she would be too much trouble, that she wouldn't have a "normal" quality of life and therefore should have no life? I'm at a loss for words. Prior to her birth, I would have never chosen this life. Now I would have it no other way...well...maybe a few less meltdowns...and frankly I wish she was potty trained. But no Hannah? No way!

Selfish Prayer Request for ME

The needle weenie has returned. It's that time again: time for my Humira injection. Tonight. In the next couple of hours. For those who are religiously offended, I apologize in advance for telling you that I have had a little Sake (pronounced sah-kee. Japanese heated rice wine. Yum...to me. Yuck to the majority of Americans).

For those who subscribe to the Labette Avenue, turn to page 14 of the latest edition. Are you there yet? Do you see the large ad for the "Community Flu Shot Clinics"? I can only ask...WHAT WERE THEY THINKING!!!???

For those who do not have access to this publication, allow me to describe it. The title reads Community Flu Shot Clinics and pictures a pair of hands holding a syringe with a 2-inch needle. TWO INCHES! Any courageous thoughts I imagined of getting a flu shot have now vanished. I'm barely white-knuckling it through this evening.

So, please pray for me as you read this blog. If you read it after November 3, pray anyways. God does not exist in time, and I believe that prayers are therefore unlimited by time. How's that for deep thought...with a little Sake.

Plan B

As I went to bed last night, I had big plans for today. I planned to go to Joplin and take care of the many little things that have accumulated over a month or so: return some curtains to JCPenney, purchase building project stuff from Lowe's, drop off at Goodwill, do my "big" shopping at Wal-Mart (yuck), etc. etc. Because the girls don't have school today and Carl has the day off, I planned to get an early start and make a day of it. I even thought I might catch a chick flick at the $1.50 movie theatre.

I awoke achy, tired and unrefreshed with an almost imperceptible tickle in my throat. After a couple of cups of coffee, I got dressed and organized for my trip, hoping that movement would produce momentum. No such luck. I'm getting old enough that I no longer know if my fatigue is caused by the RA or aging. Either way, I know my body well enough to know that if I push now, I pay later. The overcast sky, the drizzly day and the fifty-ish temperatures all conspired with my physical condition to keep me at home.

Plan B. Yesterday I made a crock pot full of beef-vegetable soup. Today I poured some of it into a thermos, cut up two green apples, and took it all to my bedroom along with caramel apple dip and a pitcher of water. I already had my book club book (I Know Why the Caged Bird Sings by Maya Angelou) waiting there for me along with my laptop. I changed from my town clothes into a pair of five-year-old sweat-pants-capris, a long-sleeved t-shirt and cozy, dorky-looking socks. Because I do FLYlady (see flylady.net) and her focus was the master bedroom zone this past week, my night stand was clean, the bedroom floor was uncluttered and the room was orderly and peaceful.

I only had one problem. Did I mention that all three girls AND Carl were home today? Any mom knows that it doesn't matter how peaceful a room is if she is interrupted every fifteen minutes with a question, a problem or even funny information. I just wanted to be left alone. I have to give Carl credit for suggesting I do this:

This is my bedroom door (ignore the fingerprints and whatever-else-that-is). Too bad Hannah can't read.

Today Carl has built a fire in our fire pit for the girls to roast stuff in and has set up a movie for them to watch in the Tahoe (yes, the Tahoe...anywhere but in the house is OK with me). I plan to spend the day curled up cozily in bed practicing the three R's: reading, writing and resting.

You've Come a Long Way, Big Girl

As Katie, Hailey and two neighbor girls ran giggling out my front door, Hannah ran up to me and said, "Pay ahsyee. Me too!" (Translation: Play outside. Me too!)

"Alright, Hannah, but you have to put on shoes and socks," I told her, assuming she would lose interest while dressing.

"OK!" Hannah said excitedly and hurried into her bedroom. I continued cleaning the kitchen until I heard, "Mom! Mee-ooh. Hep me peese. Buhts" (translation again: Mom! Come here. Help me please. Boots.")

When I found Hannah in her bedroom she had changed from her weather-appropriate sweat pants and long sleeves into the stylish ensemble you see here.



I'm including this second picture because it more clearly shows the entire "look," except it's blurry.

" 'Mon mom! (come on, mom!)" Hannah pleaded, so I disregarded my kitchen work (she really had to twist my arm), grabbed my camera and cane and headed outside. Hannah and I matched each other perfectly playing hide and seek. She could count to twelve, which took just long enough for me to hobble behind a bush, trying not to use my cane because it's sound would give me away, and yell, "Ready or not, here Hannah comes!" She called for me, I answered, and she SQUEALED with delight, moving ever closer to me. Once she "found" me, she belly laughed and ran away, then turned and said, "One more"...at least seven more times.

My heart overflowed for so many reasons. The obvious: I laughed out loud at her outfit. It's the look that makes mothers smile while strangers wonder. But a deeper story of gratitude begins with those boots. Grandma Janis bought those boots for Hannah last Christmas. I picked them out, thinking they would be perfect. However, once Hannah put them on, she couldn't walk. Because of the Dandy-Walker, she wasn't a very dandy walker and couldn't keep her balance with those clunky things on her feet. So, winter 2006-07 came and went without wearing the boots.

But today began a new chapter in the boot story. Hannah didn't just walk in those boots, she RAN. She jumped off of four-inch curbs with a single bound! Those boots helped me remember how far we've come, how long it took Hannah to crawl, then to walk. Now she runs and climbs. Just a few months ago Hannah barely spoke individual words. Now she attempts complete sentences. I marvel at her persistence and wish I could somehow intravenously inject her patience...as well as a little of that energy.

Today, in the midst of difficulties, diagnoses and meltdowns, laughter reigned. Hannah, you've come a long way, big girl. I'm so proud to be your mom.

Feeling Philosophical: Compassion & Understanding

I met Lou Ann Duffy while I was a nineteen-year-old college sophomore. Like some kind of freaky foreshadowing, Lou Ann had recently been diagnosed with rheumatoid arthritis (RA) while I was at the prime of my health. We attended the same Catholic university, lived in the same dorm and both of our boyfriends were in rock ‘n roll bands out of town, which meant we both left town each weekend. We became friends as a result of all we had in common, but our similarities ceased at gym class. While I did high-kicking aerobics with the rest of the class, she marched in place. While we ran, she did small range-of-motion exercises. We KICKED-two-three-four! She streeeeetched.

I remember talking with her late into the night, a conversation during which she tried to describe RA to me. I thought, “What a whiner. You look fine. Suck it up.” Early RA is cruel. It gives you invisible, debilitating symptoms while leaving you looking outwardly as healthy as ever. I transferred to a different college before I developed RA myself and lost touch with Lou Ann. She never knew I became sick.

Everyone who goes through chronic, difficult circumstances asks the same question at some low point: Why me?... I don’t have the answer to that question. But I do have twenty years of hindsight that have taught me to view life more as “cause and effect” than as “why or why not?” I don’t know why your child became ill or why her husband died. I don’t know why I have RA. But I can see the effect those circumstances have had on people. I have seen people become bitter. I have watched others blossom with faith. Still others ride a rollercoaster down to despair and back up to faith over and over again. Personally, I’ve experienced all those effects...and more. Today, my mind has wandered a crooked line straight to compassion and understanding.

In hindsight, my early twenties were the perfect years for my personal life lesson of compassion and understanding. I was old enough to have done lots of playing: playing the piano, playing tennis, playing college intramural sports. But I was also old enough to have developed opinions and judgments. The homeless needed to work harder. People with messy yards were apathetic. Untidy homes equaled laziness. If you were sick, you hadn’t taken satisfactory care of yourself. Overweight people just needed to push away from the table sooner. I had your basic bootstrap mentality: everyone needed to pull themselves up by their bootstraps.

Those memories of the twenty-something Angela clarify the evolution of my compassion and understanding. Now when I hear that someone has been diagnosed with fibromyalgia or any other invisible, but painful disease, I give them the benefit of the doubt. Twenty-something Angela would have been skeptical, just as I was with Lou Ann. When another friend, who also has RA, arrives at church with greasy hair and a wrinkled skirt, I realize she must be having a particularly painful morning (try scrubbing through hair with knuckles that feel like fire). Twenty-something Angela would have judgmentally been aghast. When I haven’t heard from a friend in an unusually long time, I now wonder if they are experiencing difficulties. Twenty-something Angela would have taken it personally.

Recently I spent time with an acquaintance who is especially concerned about appearances. In the last decade she has commented that my moustache has gotten too dark, that my brows need waxed, that I needed to hold my stomach in, that my bed needed made...you get the idea. This particular acquaintance definitely does not know how it feels to make the decision of whether or not to shower for the day based on how exhausted one feels after showering.

After spending WAY too much time feeling hurt (boo hoo) by her latest remarks, I finally asked myself, “Why do I care so much? Why am I expending so much mental energy on such trivial issues?” Especially when I know this person is not spiteful or mean-spirited and probably sincerely believes she is doing me a favor.

Compassion and understanding. My acquaintance is extremely healthy, her children are healthy, she is financially successful, she always looks terrific—on purpose. Her biggest complaint is that her family is too busy, a complaint that she prefaces with, “I really don’t have room to complain, but...” She knows her life is good. I would have it no other way. However, compassion and understanding are muscles that are built on the weight benches of trials and hardship, unless one builds them through intentional practice. She and I haven’t been using the same weights, so her statements seem to stem from judgment.

I sound like I’m tooting my own horn. I hope not. I see the speck in my eye as I look at what I perceive as the timber in hers. My argument against her is inherently flawed: I claim compassion while not really knowing and having compassion for the difficulties she probably is silently experiencing in a world completely outside of my own...her own “weights.”

So, for everyone going through something difficult...and that would be just about everyone...allow your difficulties to create compassion and understanding. You will probably never know "why"--the cause for your challenging circumstances--but you can decide the effect. My acquaintance is beautiful on the outside. But I am so much more thankful for--so much more aware of--the beauty of friends and family that reaches out from the inside.

Needle Weenie

It's that time again: time to give myself a Humira injection. Actually I should clarify: it's time for Carl to give me a Humira injection.

Since I developed arthritis at age 20, I have sampled the gamut of treatments: malaria drugs that made my palms itch, cancer drugs that did nothing, antibiotic treatments that I didn't give enough of a chance and some really terrific pain meds. I've tried herbs, "alternative medicine," faith healers, visualization...you name it, I've tried it. I even took a trip to Lourdes, France hoping to find healing in the waters. You may think I'm nuts, but you try chasing three kids with a whacked-out hip--you become willing to try just about anything.

Hee hee. I just read my last sentence and I see myself madly screaming while flailing some prosthetic hip at my kids. I need to work on my grammar.

So, now I've reached the realm of last resorts, what I call the "big guns." Some fantastic disease-modifying drugs exist now that, if they don't totally destroy my immune system and give me cancer, will slow or stop the arthritis and give me a better quality of life.

The problem Other than the cancer bit)? The big guns require needles and I am a huge needle weenie. I bow to all you diabetics who shoot up daily. I only have to inject myself once every other week and I get weak just thinking about it. Carl and I have succeeded once at giving me an injection...after three margaritas and a wonderful little anti-anxiety pill. I told that to my rheumatologist and he gave me a funny look...so I told him I was only joking.

The second time we prepared for the injection (prepared means I again drank several margaritas and blew an entire evening by being freaked out), my sister and her husband were visiting. The injection itself is pretty simple. The medicine comes prepackaged in an injection pen with red caps labeled "1" or "2" on each end. Carl pulls off the caps, pinches a blob of fat on the top of my thigh (real hard to find these days--ha!), puts the "1" against the blob, then presses the "2." The pen does the rest as long as I hold still. Well, Carl never has been one to read instructions. As I clinched my eyes closed and held my breath, Carl placed the pen on the blob while Ashley and Ed (my sister and her husband) watched. I heard the "click" of the pen and thought, "Wow, that's not as bad as I remember it." At the same time I heard Carl and Ashley both yell something indistinct. I opened my eyes to discover that Carl had the pen upside down and had injected his thumb, then sprayed Ashley with the medicine that remained after he jerked said thumb away. Frankly, I was relieved.

So, this time we'll be reading the instructions. Maybe I'll even keep it down to one margarita.
...Nah.

Disclaimer: yes, I know all about the effects of drinking on the liver, especially since these wonderful medications are pretty hard on the liver.