Translation and Blessings

Beautiful spring sky and the blooms on my miniature crab apple tree

I was told that I need to knock-off the "medical-jargon"....so here's the translation of my last blog post: I'm having more symptoms and my ALS is progressing. That's the long and short of it.... sorry for the big-word-eese...honest, I don't do it to confuse...just second nature!

It is a beautiful, beautiful day! I am sitting on my front porch, with praise and worship playing from a streaming station at http://www.pandora.com/. I am enveloped by God's love. God is multiplying my friends like Jesus did the loaves and fishes. Wednesday Sheryl was here with her unstoppable energy and creativity! Friday afternoon I got to hang out with Julia and that night I had fellowship at Small Group (love you guys!!) and yesterday (before I was even up!) Danny had come over and cleaned out the gutters (thank you, thank you, thank you!) and even brought "treats" for Christopher and me. Yesterday our friends the Horaks were here and went to church with us last night. Today my friend Roni surprised us with a visit and then my buddy from the ER at Methodist, Aaron, and his wife, Michelle and their friends came over and are working in my flower beds (that is an understatement...more like transforming my yard)!

I feel like a princess...and yet I am SO humbled. People who don't even know me, sacrificing their time and effort just to make my world more beautiful! WOW. Isn't God amazing? This is all HIM loving me through souls in "earth suits"!

Love,

Claudia

Medical Update

Hi all,

Up until the past few weeks, I don't feel that there has been much to report regarding my health. I've gotten progressively more fatigued, have more slurred speech, more trouble eating, yadda, yadda. The past couple of months things have taken a somewhat more dramatic (for me, at least) change. The most obvious new physical symptom I've developed is clonus. I had some jaw clonus (feels just like your 'teeth chattering' for no reason) for many months, but I now have clonus in my extremities. Unfortunately it is making my balance more unsteady. The other rather significant symptom I've developed is marked dyspnea (shortness of breath) with exertion...to the point where I can only speak in one-to-two-word sentences. I saw a pulmonologist in Indy last week and he has changed me from my BiPAP to a non-invasive ventilator at night (AVAPS) and has put me on a 6-week blitz of nebulized short-acting and long-acting bronchodilators as well as steroids. This, coupled with my immune deficiency (treating my inability to fight the bacteria that causes pneumonia) is a concerning development. Mostly, though, I just get frustrated because my phyisical activity and sleep are so negativly affected by my breathing.

So, you might see me in my wheelchair, or walking with a "rollator" walker. All this said, I don't think I "look sick" and I'm glad of that. I'm trying to get sun whenever I can to cast off the winter-pale and I laugh and joke as much as possible! Come join me on the deck or front porch! Bring your sense of humor...it is the only requirement.

Love, Claudia

Please activate prayer chains

In a nutshell... please pray that our situation with Medicaid is rectified! As it stands, I have a $927/month spend down (I have to pay that out of pocket on Medicaid eligible expenses before Medicaid will pay a DIME toward my medical bills). I have Medicare, but it is TERRIBLE insurance by itself.... so the amount I have to pay out of pocket would likely be the maximum which, incidentally, is almost 50% of our monthly income. Just as an example...IF Medicare covered 80% of my current medical expenses that could come to over $1400 per month...my IV Gammunex alone is close to $7000 a month and my AVAPS (non-invasive ventilator) is over $900 per month.

This could make us homeless or cause me to go without necessary medical care.

God is the only one who can change this. We have an appeal hearing on May 14th but were told outright that we will loose and owe Medicaid for everything they've paid for up to that $927 per month for each month since the change was made (5 months ago???).

Thanks for praying.

Claudia

Coming to you live....

Well, it has been a while since I actually blogged about current goings-on and I thought it was time! I owe a couple of you emails (Cory!) but honestly I haven't been on the computer very much in the past 6 weeks or so. I have really seen a decline in my stamina and my arms are getting weaker so sitting at my computer has been a real drain. I'm working on some solutions to that, with the help of my friends Kent and Vicki. I'll keep you posted.

My breathing has become more of an issue of late, as well. I have found that minimal exertion leaves me short of breath and unable to speak in sentences longer than 1-2 words. I saw my neurologist a couple of weeks back and he referred me to a pulmonologist (lung doctor) who I saw on Friday. I was very impressed with him and am happy to say that we've at least got a "plan". My RT (respiratory therapist) came and traded out my BiPAP for an AVAPS, which is essentially a ventilator that is non-invasive. For those of you "medically inclined", the AVAPS has a tidal volume, rate, max/min IPAP (inspiratory pressure) and EPAP (expiratory pressure...sort of like PEEP). The pulmonologist ordered a gazillion labs to make sure that some other medical problem (besides my ALS, asthma or obstructive apnea) isn't contributing to my breathing problems. He thinks that it is likely a combination of my ALS and my asthma. So, I get to start on nebulized steroids and long-and short-acting bronchodilators.

My balance sucks at times and my legs just feel weak after I walk. I am using my wheelchair more when transportation allows me to take it 'with'. Unfortunately, our wheelchair van spent a month in New Whiteland with my buddy Kent in charge of getting it fixed (which he did....God love him!). We got it back last Monday and yesterday we drove it for the first time and the brake light is on and the brakes are NOT working right. SO.....here we go again.

The good news is that we are all healthy and Phillip is even here visiting this weekend. It is so great to have him around. He has become such a wonderful young man. He is eager to help and is always very polite. He calls Amy and me "darling" and "my dear" (and Christopher is "buddy", "bud" or "bro"). I can't believe that he will turn 21 in less than 2 months!

Catherine is finishing up her first year of her master's degree at ISU. She taught freshman English this semester and has gotten a real dose of "what is different between an 18 year old and a 22 year old"! Light years! And (as those of you old geezers like me know) there is more revelation to come! Look at the chasm between 22 and 30!

Christopher is eagerly awaiting the arrival of the "baby mantis[es?]" (plural...we have 5 mantis egg sacs in our yard). I'm just ready for us to have the last freeze solidly behind us so that the beautification of the yard can begin. I am so excited because Michelle and Aaron Hoard are bringing some of their church friends up on May 4th and will help get some of the weeds pulled, and some other yard "sprucing" done! (Thank you guys!)

It has been a beautiful week here in central Indiana, but alas, the second of two cold fronts in as many days will move through tomorrow and next week is supposed to be quite a bit cooler....but we'll warm up again soon after that! I'm ready for get-some-sun-on-the-deck weather!!! I am SO sick of being couped up indoors! I have some small flower plants started from seeds (too early) and a couple of geraniums to put out as soon as the frost danger is passed.

Well, that's about it for now. No philosophy, religion or general sappy sentiment...just love from 'me to thee'.

~Claudia

Subject: Magnolias

I spent the week before my daughter's June wedding running last-minute trips to the caterer, florist, tuxedo shop, and the church about forty miles away. As happy as I was that Patsy was marrying a good Christian young man, I felt laden with responsibilities as I watched my budget dwindle . . . So many details, so many bills, and so little time.

My son Jack was away at college, but he said he would be there to walk his younger sister down the aisle, taking the place of his dad who had died a few years before. He teased Patsy, saying he'd wanted to give her away since she was about three years old!

To save money, I gathered blossoms from several friends who had large magnolia trees. Their luscious, creamy-white blooms and slick green leaves would make beautiful arrangements against the rich dark wood inside the church.

After the rehearsal dinner the night before the wedding, we banked the podium area and choir loft with magnolias As we left just before midnight, I felt tired but satisfied this would be the best wedding any bride had ever had! The music, the ceremony, the reception - and especially the flowers - would be remembered for years.

The big day arrived - the busiest day of my life - and while her bridesmaids helped Patsy to dress, her fiancé Tim walked with me to the sanctuary to do a final check. When we opened the door and felt a rush of hot air, I almost fainted; and then I saw them - all the beautiful white flowers were black. Funeral black. An electrical storm during the night had knocked out the air conditioning system, and on that hot summer day, the flowers had wilted and died.

I panicked, knowing I didn't have time to drive back to our hometown, gather more flowers, and return in time for the wedding. Tim turned to me. "Edna, can you get more flowers? I'll throw away these dead ones and put fresh flowers in these arrangements." I mumbled, "Sure," as he be-bopped down the hall to put on his cuff links.

Alone in the large sanctuary, I looked up at the dark wooden beams in the arched ceiling. "Lord," I prayed, "please help me. I don't know anyone in this town. Help me find someone willing to give me flowers - in a hurry!" I scurried out praying for four things: the blessing of white magnolias, courage to find them in an unfamiliar yard, safety from any dog that may bite my leg, and a nice person who would not get out a shotgun when I asked to cut his tree to shreds.

As I left the church, I saw magnolia trees in the distance. I approached a house... No dog in sight. I knocked on the door and an older man answered. So far so good . . . No shotgun. When I stated my plea the man beamed, "I'd be happy to!" He climbed a stepladder and cut large boughs and handed them down to me.

Minutes later, as I lifted the last armload into my car trunk, I said, "Sir, you've made the mother of a bride happy today."

"No, Ma'am," he said. "You don't understand what's happening here."

"What?" I asked.

"You see, my wife of sixty-seven years died on Monday. On Tuesday I received friends at the funeral home, and on Wednesday . . . He paused. I saw tears welling up in his eyes. "On Wednesday I buried her." He looked away. "On Thursday most of my out-of-town relatives went back home, and on Friday - yesterday - my children left." I nodded."This morning," he continued, "I was sitting in my den crying out loud. I miss her so much. For the last sixteen years, as her health got worse, she needed me. But now nobody needs me. This morning I cried, 'Who needs an eighty-six-year-old wore-outman? Nobody!' I began to cry louder. 'Nobody needs me!' About that time, you knocked, and said, "Sir,I need you."

I stood with my mouth open.

He asked, "Are you an angel? The way the light shone around your head into my dark living room..."

I assured him I was no angel.

He smiled. "Do you know what I was thinking when I handed you those magnolias?"

"No."

"I decided I'm needed. My flowers are needed. Why, I might have a flower ministry! I could give them to everyone! Some caskets at the funeral home have no flowers. People need flowers at times like that and I have lots of them. They're all over the backyard! I can give them to hospitals, churches - all sorts of places. You know what I'm going to do? I'm going to serve the Lord until the day He calls me home!"

I drove back to the church, filled with wonder. On Patsy's wedding day, if anyone had asked me to encourage someone who was hurting, I would have said, "Forget it! It's my only daughter's wedding, for goodness' sake! There is no way I can minister to anyone today."But God found a way. Through dead flowers.

"Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

If you have missed knowing me, you have missed nothing.
If you have missed some of my emails, you may have missed a laugh.
But, if you have missed knowing my LORD and SAVIOR, JESUS CHRIST, you have missed everything in the world.
May God's blessings be upon you.

THIS IS SO TRUE, BEING NEEDED IS SO UPLIFTING TO EACH OF US.

Thank you for blessing me by needing me and thank you for being patient with me as I learn to let you bless me. Love, Claudia