Thankful at last

It's been a long time since writing, I know. The theory that certain things are not true if I don't commit them to words others can read is, sadly, a faulty one. But difficult truths are truly gifts if we will only unwrap the package.

A little over a week ago, my younger daughter, Jess, very somberly asked me to sit with her on the couch. This usually means something I don't want to hear. True again. She said that watching my health decline was affecting her own health, and that she was leaving to live with her sister and her dad. "I'm 15, Mom. I need to be a kid." While I sobbed in the shower, she packed a few things and left. Just like that, Jim and I were empty-nesters.

Yesterday was Thanksgiving, and both girls rode down with us to Mom's for the meal. Kelsey regaled us with Tales from the Dissection Table and her new knowledge of worms, grasshoppers, and sharks. Jess said very little. The day quickly wore me out, and toward the end of our visit, Kelsey came and sat with me on the couch, and we lapsed into old habits of conversation and teasing. It was easy and comforting. Jess circled the couch and made touch-downs long enough for a hug and then was gone.

On the way home, I fought sadness. At Mom's, it was easy enough to pretend that we all lived together, but the ride home brought us closer and closer to Kelsey's car and the truth that we don't. As I got closer and closer to tears, my new spiritual training kicked in, and I was able to ask myself what the truth really was. The answer: my children were with me in the car right now, and all I could think of was them being gone. I reeled myself into the present, said some prayers until the sadness lifted, and decided to be grateful.

And that's the real topic today: intentional gratitude. It's the balm for all woundedness. The old song, Counting Your Blessings, contains a lot of wisdom. There's a magic within the act of noticing the joy, peacefulness, revelation, what-have-you, in the moment and being grateful for it.

I am not glad my children are gone, but I am grateful for so many things in their absence:

• Time with my husband. Since we married later in life, already parents, we've never had "just us" time. It's important time for any couple.
• Time for me to heal. It is an incredible gift to be able to focus on my own health and no one else's.
• The possibility of moving to a smaller home. Two-story living has been difficult most days and a great hardship on some. I crave a smaller, single level space.
• The knowledge that my kids will be OK on their own. We've done our primary job as parents, to raise independent children who can set forth into their own lives with confidence.

Painful as change can be, the sooner I looked for the gift in it, the sooner that pain changed to peace and thanksgiving.

Namaste.

Three Minutes of Zen

This little French girl is no-holds-barred the most adorable kid on the internet. Having a bad day? Watch her tell a story. She has many to choose from. She reminds me of my oldest daughter telling a story when she was a toddler.

Enjoy!



Once upon a time... from Capucha on Vimeo.

Bat Girl Leaves Her Cave for Fruit

I seem to learn some lessons in a cave, far away from anyone else. I know, it's not a good thing to isolate, but I only have so much energy, and some lessons are very hard and require all my attention. I thought that today, I'd post the end results of some of those lessons.

Apparently, the stress test in the hospital has triggered a brutal acid reflux attack. I've never really had what I would call acid reflux before, so I didn't know what it felt like until this week. It feels like a burning golf ball in my throat. I have spent the better part of this week trying to find the magic combination to make it stop. On "good" days, the burning spreads across my chest and intensifies just under the top of the sternum. On "bad" days, the nausea, dizziness, sweating, burning, and difficulty swallowing are only manageable if I sit very, very still with ice on my chest.

I asked my chiropractor if he saw any correlation between a chemical stress test and acid reflux. Hell, yes! was his response. The nuts and bolts of a chemical stress test can be found here. To paraphrase Dr. Mike's explanation (and someone please correct me if this needs editing), the chemicals used to provoke a response in the heart affect primarily the parasympathetic nervous system, which also controls includes the esophageal sphincter. The resting state of this muscle is closed, but my my case, it seems to be stuck open as a result of the chemical used in the test. That's the theory, anyway.

In my searching for options and relief, I came across EarthClinic.com. I couldn't swallow either the aloe vera gel or apple cider vinegar remedies. My husband, Jim, came across this article which contained palatable substitutes. In summary, I have been consuming banana, pineapple, honey, and lots of chamomile tea. I am not pain free today, but I can move around a bit, and that's a start.

Back to my cave...

The Phone Rings Louder Than My Ears

Today started out so well. No cane. No dizziness. Easy breath. I hoped that the Prednisone really was working, and between the new treatment and my mom's arrival yesterday, I had turned a corner. Although every day is a new one, and I generally approach it with hope, this one started especially brightly.

Mom and I took my younger daughter to her bus stop and returned home by 7:15am. Excited that I might be able to surprise her by making a meal, I asked Mom how she liked her eggs. Then the dizziness and fatigue floated into my kitchen and settled into my body. The theme for the day had been set.

As the day progressed, my body demanded more and more of my attention, until finally, by the time my husband got home, I was not willing to have extended conversations. Breathing through pain and nausea was my top priority. Not the way I wanted to spend my day.

Then my phone rang. I stared at the caller ID and tried to make sense of it. I finally determined that it wasn't a bill collector and said a tentative hello. It really was a favorite cousin that lives two time zones away, and I managed to catch up with him for just over half an hour. And then I learned some things.

• I learned that it only takes a little breath to keep a conversation going, and I have enough.

• I learned that time and distance does not always diminish love, and I was blessed to remember that tonight.

Sometimes, as my symptoms multiply, my ears begin to ring at such a volume it is difficult to hear anything else. But tonight, there are some sounds that are louder: the Scrabble game going on in my kitchen, the quiet cursing of my visiting oldest daughter as she learns to crochet, and the voice of a beloved cousin, following up on the family grapevine. Thanks, Jerry.

Hospital Doctor Rodeo: Decent doctor 1, Idiots 2

I got to learn a lot in the last few days because I spent Sunday and Monday in the local hospital. I went because I was having trouble breathing and had pressure on my chest. Classic symptoms of a heart attack.

The ER nurses were excellent (well, they all were). I had a hard time getting from the wheel chair to the table; my legs were trembling like an old woman's. One of the nurses asked me if I had seen a neurologist yet, and I started to cry, saying that there's a 6 month waiting list for all the local ones. The same nurse said more than once to me, "You're so young to be like this." She sounded frustrated. Finally, someone who seemed to get it.

The ER doc came in and verified my chronic conditions, and when he got to fibromyalgia, I turned to look at him and said, "I'll admit to that if you don't tell me this is a fibro flare and toss me out of here." His face softened and he shook his head a little, and he promised not to do that to me.

DECENT DOCTOR SCORES!

My initial tests, chest x-ray, EKG, and blood tests came back negative for a heart attack. I learned that following a heart attack, cardiac enzymes are present in the blood stream. They kept me overnight because the enzymes from more mild heart attacks don't show up for 6-8 hours.

Also scheduled for the next day was a stress test. I was wondering how they were going to accomplish a stress test when I could barely stand, and I mentioned this to the next doctor who came to visit me. He rolled his eyes (no, really) and said that it would be done "chemically". When he was done telling me that I was fine (no, really), pending the outcome of the stress test, he asked if I had any questions. I asked him what I would have to do to get an appointment with a neurologist. He said there was really nothing I could do because there are only 4 in town. He suggested traveling to Phoenix (the nearest large city). Then he told me again that I was "fine" and left.

IDIOTS SCORE!

I am compelled to give a few details about a chemical stress test. About 30 minutes before the test, a radiologist type person (I don't know her job description, so don't get your knickers in a twist if I don't have it right) came and added some radioactive ooze to my IV. I don't know what it was exactly. I remember the radioactive part though. I was then commanded to drink two glasses of water (which she pour for me, thank you very much) in the the next 10 minutes. Then she huffed out of my room. Yes, huffed. In hindsight, I learned that her department had recently been insanely busy. But I'm not sure huffing out of a patient's room is ever appropriate.

And as an aside, I'm also quite sure that wearing MaryAnn pony tails after age, let's say... 25, is appropriate either. You know, MaryAnn from Gilligan's Island. MaryAnn pony tails are just silly after a certain age, and this woman was long past the cut off. Please inform Todd Gunn.

Thirty minutes after Maid MaryAnn shot me with radioactive ooze, I was wheeled down to radiology at a nauseating speed. I had a towel draped over my head because the constant gale force wind that blew from the climate control vent had irritated my ears and set of a mild flare of trigeminal neuralgia, which had begun to compete with the migraine induced by the nitroglycerin gel held in place by with a paper patch taped onto my chest. So there I was, in my Nascar wheelchair, white towel on my head, draped in a white hospital "blanket", zooming down the hall. I was the White Flying Nun fixin' to toss my stomach acid because I had a large sign outside my door that marked me NBO: Nothing By Mouth. No water, no food.

I arrived in Maid MaryAnn's chamber to be placed on a table that slid into what I can only describe as half of a square. The apex was directly over me, and the sides were to my left and right. I had to place my hands over my head (have I talked about stretching syncope yet? If I haven't, I'll get to it.) and grab some sort of strap. And in this position, I fell asleep, so I don't know any more details about the test.

Then I was wheeled off to Part 2 of the test. The gentlemen in there (there were 2) were so compassionate, assuring me that the "uncomfortable feeling" would last "only" six minutes, plus the 30-40 seconds it would take for the last of the drug to pass through my body after the drip was turned off. They said this over and over, and they asked me if I was ready a few times too. Then these nice men tried to kill me, apologizing the whole time, telling me it was perfectly safe, how much time was left, how well I was doing, telling me stupid jokes LIKE I WANT TO HEAR STUPID JOKES RIGHT NOW, MORONS! I think they felt really bad because I clearly had no idea what I was in for.

Here's what happens during a chemical stress test. They have to get your heart rate up so that the veins and arteries are much larger than normal, and then they take images and EKGS during that process to see how your heart is functioning and check for blockages. They introduce a natural substance into your body, but in much larger quantities than your body produces itself. This makes the heart pound very hard. For me, my thoat felt closed off, I felt very hot and flushed, and the pounding of my heart was painful. I used to run and play volleyball in high school. This heart pounding was a lot like Hell Week - the first week of volleyball practice. Practice didn't end until someone threw up. That's what it felt like. And my poor heart had not worked that hard in 25 years. This lasts for 6 minutes. The first three minutes are the worst, and it's a good thing that the technicians tell you over and over again that the procedure is safe, that you are safe, because I really thought that I might die. The next 3 minutes are kind of like labor for some women. Some of us get very focused and just try to breathe the next breath. That was my experience for the last three minutes. That's when they tell stupid jokes.

My six minutes ended, and I waited for the last of the drug to pass through. As soon as it was gone, I think I fell asleep again. I was woken up by one of the Nice Men asking me if I would take some nitro because the doctor didn't like what she saw on the last EKG "I can't make you take it, but we are recommending it." Not ready to die and my heart still pounding a bit, I took the nitro, which burns under the tongue, by the way. Moments later I was declared fine again and whisked back to my room.

Thirty more minutes passed, and the Nascar Wheelchair Champion was back to take me for Part 3 of the test. Part 3??? I asked her if they were going to inject me again, and she said she didn't think so. I was pretty sure I would live through the third round, so I asked again when I got to MaryAnn's room. She said no in a very un-MaryAnn manner and put me back in the half-square object, where I fell asleep again. Thus, the stress test concluded in an uneventful fashion. Thank God.

Back in my room, now covered by five blankets and my towel whimple, yet another doctor came in. She introduced herself and asked me why I had a towel on my head [because you can't get anywhere in this universe without your towel! Duh!]. Then she told me I was fine and they were sending me home. By now, I am undrugged enough to question her definition of fine. "It's the fibromyalgia." I asked her if fibromyalgia progresses (it typically does not), and she diverted with "This is the costochondritis" and she parried with pushing on my chest. I countered with "it always hurts there, this is a new pain, a new pressure, and I am HAVING TROUBLE BREATHING." She listened to my chest in the way frustrated doctors do by going through the motions, not leaving the stethescope on the back or chest long enough to hear anything. Then she stood upright and backed away from me, whipped out her prescription pad, and offered the only thing she had left: Prednisone. I accepted it only because it was a short course, no one was obviously interested enough in finding out why I can't breathe properly, and I have grown so fond of oxygen.

IDIOTS SCORE AGAIN FOR THE WIN.

And I was summarily dismissed.

Game over? Oh, hell no.

Really? I'm the only one who cares?

I promised myself (and my loyal reader, Mom) that I'd write down what I've learned, and given that it's been several days since I've done that, time to catch up.

Tuesday, I learned that democracy still works.

Wednesday, I learned that I still have some skills worth money. I had the privilege of coaching a quartet of friends, and while I thought there might be donuts as reward, I actually got $50, which meant I could buy my husband a birthday present. God does provide.

I also learned on Wednesday that the office staff of my intended specialist, a rheumatologist, really is that bad. After shouting at me through the glass, "Are you looking for Jim?!?", a nurse came out and asked what I wanted. I handed her my records that have been faxed to them twice but they "never got it." Nurse Apathetic asked if I was a patient, and I said I was trying hard to be. Then she gave me the litany of reasons that the doctor was going to take a long time to look at my records. I don't even care anymore.

Thursday, I learned that the doctor I was hoping to use for diagnosis in the first place actually ordered a test! So I called the hospital after allowing time for the orders to be faxed and received. Oh yes, the orders are here. "I'll have to call you back after I talk to the doctor, though." Then the nurse hung up on me without taking my number. She didn't call the doctor either. I was having a hard time breathing that day, and phone conversations were difficult, so I didn't care anymore about that either.

Also on Thursday (it's been a banner week!) I learned that if you file for Social Security disability electronically, you get a call the next day to make your telephone appointment. Then you have about two weeks to send in your birth certificate, fill out another form (which you can do online), and get your medical records together and sent in.

The following day, Friday, added evidence to a growing realization: no one cares about you using a cane or other assistive devices as much as you do. My daughter had asked me to walk with her on the field for Senior Night at the football game. Senior athletes and musicians in the marching band are allowed to write a statement of their future intentions, thank yous, and farewells, which is read as they walk a designated path on the field with their families. I was concerned that I would walk too slow, walk too obviously disabled, or worse, not be able to walk at all and have to let the rest of the family go without me. As it turned out, Friday was a great day, a welcome respite from the previous two days, and I could walk at least fast enough unassisted by a cane. But it wouldn't have mattered anyway.

Yesterday was my husband's birthday, and I had some ambitious plans: get up, make breakfast for him, bake a cake, and tidy the kitchen. None of it happened except the get up part. Friday had taken its toll, and I could not walk well at all. I got my land legs at about 1pm, so we decided to try to run a few errands. 90 minutes later I was red-faced from humiliation in a wheel chair in Walmart. And again, nobody cared but me. There's a theme here. By the end of the Walmart shopping, I was in and out of full consciousness, staring off into space while my husband wheeled me around. Happy birthday, my dear. Here's a drooling wife to celebrate. He said he didn't care, but I did.

Sigh.

I think this is a lesson I've needed to learn for a long time, and I think I'm ready to learn it now. Or at least try. The general public doesn't really care if I'm disabled or not. Not really. Yes, my friends and family watch me with concern, but the sooner we all can accept what is, the easier it will be.

Well, it's been a long week and I didn't sleep this night, despite muscle relaxers and Ambien. I'm starting to get mentally sluggish. I'm sure I will learn something today too, but remembering to write it down may be another matter.

The Morning After

I started the campaign season with a mixture of apathy and cynicism. Ron Paul didn't make it through the primaries (don't get me started), and I just lost my appetite for the whole process. But after we voted, my husband for the first time in 28 years, something odd happened: we cared about the outcome.

We don't have TV, so we kept tabs on the race via the internet. Our primary source of information was the interactive map provided by Reuters.com. I compulsively refreshed the screen until it became clear that Obama had won. As a long time resident of Arizona, I never take a race for granted (anybody else remember waking up to the shocking horror of Ev Mecham's governorship?), so I waited until McCain conceded the race to fully believe that it was over.

Then another strange thing happened. I felt hope.

It sounds overly romantic and/or dramatic, but the knowledge that such an historic event had happened in my lifetime, that my family was here to witness it, filled me with a hope for our future that I hadn't really dared to dream about. I don't know a lot about our new president, but I know he's a symbol of change, and I witnessed my fellow countrymen and women affirm their desire for change.

And things must surely change dramatically. The change we've been intuitively sensing, some with fear and others with excitement, has arrived.

Already in the mini-blogs like mine, people are starting to voice their concern for our new president's safety. It has been an occasional topic of discussion in our home for months now. I have advised my children to pray for his safety. History does not have to repeat itself. We can, as a nation, hold his safety in our imagination, rather than fear. It is part of the Great Change that has come - to combat fear with love and confidence. And our collective love, imagination, and confidence can do nothing but produce many great outcomes.

Relish this time, my friends. We have a sacred work to do, and now we can be fueled with the hope that we do not do it alone, but with many, so many, at our side.

Namaste,
Cindy