Friday, November 20, 2009

Healthcare Reform: Real-life experiences to illustrate why I OPPOSE it

Tomorrow the US Senate votes on cloture for the Healthcare bill. I am strongly opposed to the healthcare reform bills currently circulation because I don’t want the government any more involved in my life than it already is. The same bureaucratic rocket-scientists who brought you the IRS, Amtrak and the USPS want to ‘help’ with your healthcare. It sounds wonderful. You need a medical test or procedure? NO PROBLEM! It’s covered. But WAIT.
I have learned over the years that just because the government “offers” a benefit, it doesn’t mean you GET the benefit. How can that be? Do you have any idea how challenging it is to find a decent doctor that accepts Medicaid? Most aren’t taking any new Medicaid patients. But say you find one. Your child is disabled and needs “waiver services”… services that regular Medicaid doesn’t cover. “There’s an app for that!” You apply for the waiver and, after a barrage of paperwork and medical documentation, you are told that your child qualifies for the waiver! Great news, right? Not so fast. Your child qualifies but there are no slots available on the waiver. The government only funds x-number of slots and the only way that you get one is for someone currently on the waiver to “drop off” (move out of state – the benefits don’t follow the person – or die). So your child is place on a waiting list. You’re told they’ll “contact you when a slot comes open”. You ask how long the waiting list is and you’re told that people currently being placed on the waiver applied 10 years ago. TEN YEARS. So, those services you need are COVERED, but hopefully your kid doesn’t REALLY need them now. She’ll get them a decade from now. How’s that for service? BUT WAIT! There’s more…. Just because you finally get a slot on a waiver it doesn’t mean that there are WAIVER PROVIDERS in your area. What good is a therapist or service when the nearest provider is 2-3 hours away. But – the service is covered. A comfort, no?

Then there is the outstanding efficiency and customer service those bureaucrats are legendary for! Here’s an example from real-time, here in Delaware County. Because of our situation we are eligible for “PRIORITY” status for energy assistance. We called in September and were given an appointment in early November (“priority”, huh?). All adults permanently residing in our home were required to be present for the appointment, which was conveniently scheduled during normal business hours. The lady doing the intake was polite while taking our information. She gave us a form that we had to bring back along with the social security cards for everyone in the household. Our appointment was on Monday. She said, “You can come back any Friday at 9AM or 1PM and just tell them you have your form and SS cards.” Today Amy went to drop off the forms, arriving at 0815 and was told that she was #35 and they only take 20 applicants at 9AM. She went back at noon and was told that the people who were being seen (basically, just dropping off forms) were given the 20 slots at 1100. There was one woman there who was on her 6th (SIXTH!) try, and another on her 4th. They only take paperwork on Fridays. And the employee who told Amy that was none-too-sympathetic or apologetic. Her job evidently does NOT depend on how she treats “the customer!” Just imagine if this was something URGENT (because heat in the winter isn’t urgent, right?).

Then there’s the COST of the proposed healthcare reform. It is said that they will cut $500 million from Medicare and “reduce waste” in Medicare and Medicaid to help pay for the program. Here’s an idea: how about we SAVE first and once it has been demonstrated that we CAN save by reducing waste, THEN we can start spending the money! Oh, wait…that would be un-American (it is the AMERICAN WAY to spend first, run up a big debt – like with credit cards – and then figure out how to PAY for the stuff, right?) The bill is even purported to be “deficit neutral” (they’re financing 5 years of coverage starting in 2014 with 10 years of taxes, ‘savings’ and other revenue). Unless they’ve found a PAUSE button for the calendar, so we can repeat the 10-years-of-payments-for-5-years-of-service cycle again, it won’t be “budget neutral” for long.

I have no choice but to take what I get from the government. YOU probably have more choices. If you think they’re viable, you might want to consider fighting to KEEP them. Let your voice be heard at

Thursday, November 19, 2009

DRINK....your veggies

About a month ago, I was blessed to be able to get a Vita-Mix.  If you've never heard of one, they're a blender - on STEROIDS.  I had heard how wonderful they are for years and as food gets harder to eat I thought that it would be a wonderful way to be able to still eat fresh fruits and veggies.  Well, IT IS!  I LOVE it! One of my favorite things is the "Everything Smoothie".  The ingredients are: soy milk, red grapes, pineapple chunks, an orange, frozen peaches, carrots, broccoli, spinach, frozen strawberries, frozen banana and ice.  Blend until smooth!  It tastes DELICIOUS!



Tuesday, October 27, 2009

God’s Timing: Trusting It

Most of you don't know this, but we applied for "Extreme Makeover: Home Edition" a few months ago. We need a makeover. Our house is so cute, but it is groaning under a plethora of small not-so-small problems. As my disability progresses, the needs for home modifications will increase. The irony in this is that, today, they are bringing a family back to their new home just 60 miles from us. The feeling of "not quite" getting what we need is almost indescribable.

God is working on me, teaching me to trust Him to meet our needs and to do so in HIS time. How hard that is!!!! This morning the devotional below was in my email inbox. God does have a knack for timing. Thank you, Father, for loving me and for meeting our needs in Your way, in Your time. Amen.

His Vision, His Way, In His Timing
TGIF Today God Is First Volume 2, by Os Hillman

"Then God said, 'Take your son, your only son, Isaac, whom you love, and go to the region of Moriah. Sacrifice him there as a burnt offering on one of the mountains I will tell you about'" (Gen 22:2).

Have you ever wanted something so bad that you would do almost anything to get it? Have you ever gotten so close to fulfilling a dream only to have it disappear right before your eyes? Such was the case for Abraham.

God promised Abraham that he would be the father of many nations. He would have a son. However, Abraham panicked when Sarah aged beyond child bearing years and tried to help God by birthing Ishmael through Sarah's servant, who was not the promised son. Eventually, Isaac was born, who was the promised son.

However, God tells Abraham to sacrifice his only son on an altar to demonstrate his obedience to God. Truly, this is one of the hardest instructions given to one of God's people in all of scripture. It compares only to the Heavenly Father sacrificing His own Son. God intervenes and allows a ram to get caught in the bushes nearby, symbolizing the Lamb of God as a prophetic sign of what is to take place in the future.

God often births a vision in our lives only to allow it to die first before the purest version of the vision is manifested. This has happened several times in my own journey. Oswald Chambers observes, "God's method always seems to be vision first, and then reality, but in between the vision and the reality there is often a deep valley of humiliation. How often has a faithful soul been plunged into a like darkness when after the vision comes the test. When God gives a vision and darkness follows, waiting on God will bring you into accordance with the vision He has given if you await His timing. Otherwise, you try to do away with the supernatural in God's undertakings. Never try to help God fulfill His word."*

When God's vision is finally birthed, nothing will stop it. Our job is to allow God to birth His vision through us His way and in His timing.

Oswald chambers, Not Knowing Where, Discovery House, Grand Rapids, MI.

Saturday, October 17, 2009

Fall Foods

Pumpkin Bread Pudding

Raisins or chopped pecans can be used in place of the dried cranberries, or try another chopped dried fruit.


  • 8 ounces French bread, torn into small pieces, about 5 cups
  • 2 cups half-and-half, or half milk and half cream
  • 3 large eggs
  • 2/3 cup granulated sugar
  • 2/3 cup brown sugar
  • 1 can (15 ounces) pumpkin puree
  • 1 cup dried cranberries
  • 3 tablespoons melted butter
  • 1 teaspoon ground cinnamon
  • 1/2 teaspoon ground nutmeg
  • 1/2 teaspoon ground ginger
  • 1 teaspoon vanilla
  • cinnamon sugar, optional


Butter an 11x7-inch baking dish. Heat oven to 350°.

In a bowl, cover the torn bread with the half-and-half; set aside.

In another bowl, combine eggs, sugars, pumpkin, cranberries, melted butter, spices, and vanilla; blend well. Pour pumpkin mixture over soaked bread and stir to blend.

Pour mixture into the prepared baking dish. Sprinkle top with cinnamon-sugar, if desired. Bake for 45 to 60 minutes, or until set.

Serve with a vanilla dessert sauce or brown sugar sauce, whipped cream, or vanilla ice cream.
Serves 8.

Brown Sugar Sauce

A delicious brown sugar sauce for bread pudding, fruit desserts, pound cake, ice cream, and other goodies.

Prep Time: :

Cook Time: :


  • 1/2 cup brown sugar, packed
  • 2 tablespoons corn syrup
  • 1/4 cup butter
  • 1/2 cup heavy cream
  • 1 1/2 teaspoons vanilla


Combine all ingredients in a saucepan over medium heat. bring to a boil, stirring frequently. Reduce to medium-low and let boil for 5 minutes. Remove from heat. Sauce will thicken as it cools. This sauce is delicious with bread pudding, plain unfrosted cakes, ice cream, or other desserts.

Monday, September 14, 2009

Morally Reprobate Judges the Physically and Mentally Handicapped

Tonight I believe I got a loud and clear message from God! I'm still reeling, actually, but I just had to share. It was church "Ladies' Night Out" and we had a wonderful meal at Olive Garden combined with some fellowship. Our waiter was a handsome, dark-haired, dimpled young man from Israel. As I looked at him, it dawned on me that he was "what Phillip would look like if he didn't have Fragile X Syndrome". Now, don't get me wrong, I think Phillip is handsome, but the protein deficit caused by Fragile X has made his face long, his muscles droopy and his mouth hang just a bit "open" most of the time. In short, he "looks" disabled. My mother's heart felt sad seeing a living, charming young man who was virtually the image of what might-have-been. Then it dawned on me... that IS what Phillip is going to look like in Heaven!

Then I came home, and found a Facebook link to this article. After reading it, and being suitably appalled it hit me: PHILLIP IS EXACTLY LIKE GOD WANTS HIM TO BE! God didn't WILL him to have Fragile X, but God allowed it, so that people like you and me could learn to value people for more than what they look like, what they can "do" or how much "stuff" or power they have!

Although I haven't set eyes on Phillip since Olive Garden tonight, I know that I will look at him differently now. I will see not only the gift that he is to our world (and he IS) but the handsome young man that God created him to be. I pray that when I get to Heaven with Phillip, he's able to put his arms around me and say "Mom, thanks for loving me like I was... and seeing who I WAS"!

Thursday, July 2, 2009

Tough Times

Is this economy causing you to struggle? Wonder where the money for the bills is gonna come from? I DO!

I have a suggestion...... GIVE!

Sound insane? Maybe.

But unless we all start giving again, WE are the ones who are going to suffer! Find your favorite "worthy cause" and give a little. It doesn't have to sink the budget.... you'd probably "find" $20.00 for something you really wanted to do, right? Why don't we all REALLY WANT to help someone else???

I've taken the step myself. In my case it is another step of faith, along a pathway of faith. Don't let fear rob you of the joy of giving! The governor or Illinois put it this way:

"Service to others is the rent we pay for our place in God's earth."

Service and giving are the ONLY "rent" that pays US back more than we give!

Saturday, June 13, 2009

Listening for God’s Voice

Being Led by God
TGIF Today God Is First Volume 2, by Os Hillman

"For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts" (Isaiah 58:8,9).

How do you know what thoughts are your thoughts versus God's thoughts? One of the great paradoxes of walking with God is discerning the difference between a "natural idea" versus a "God-idea." One of my mentors challenged me one day to make sure that my ideas and the actions I take are directed by God and not from my own reasoning. But being in a marketing profession, there is a constant rub between the "natural" and the "spiritual."

There are three places from which a thought or idea originate: 1) Our natural man, 2) Satan, and 3) The Holy Spirit. There are a few ways to discern from which place a thought is coming. If a thought comes into your mind that you know you would never have thought of, and it might be something you would not normally consider doing. This is likely God speaking.

I once participated in a conference when an offering was being taken to make up for a poorly organized event that left the organizers very short on funds. It was clearly a case of poor management. Nevertheless, I prayed. I assumed I would give a token gift. However, the figure that suddenly came into my mind was $1,000. I argued with God and struggled with my attitude. I thought He must have two zeros out of place! But I obeyed - as I knew that was not my idea.

In order to be obedient, we must not make advance decisions about a particular matter. Each of our decisions must be submitted to the Lord for His counsel to us, not just based on our reasoning.

Sunday, May 3, 2009

His Eye Is On The Sparrow

His Eye Is On The Sparrow

Words by Civilla D. Martin, 1905
Music by Charles H. Gabriel, 1905

Why should I feel discouraged, why should the shadows come,
Why should my heart be lonely, and long for heaven and home,
When Jesus is my portion? My constant friend is He:
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I'm happy,
I sing because I'm free,
For His eye is on the sparrow,
And I know He watches me.

"Let not your heart be troubled," His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I'm happy,
I sing because I'm free,
For His eye is on the sparrow,
And I know He watches me.

Whenever I am tempted, whenever clouds arise,
When songs give place to sighing, when hope within me dies,
I draw the closer to Him, from care He sets me free;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I'm happy,
I sing because I'm free,
For His eye is on the sparrow,
And I know He watches me.

The picture in this entry is of a robin's nest in the miniature crabapple tree right off our front porch. Yesterday there was one small, blue egg. Today there are two. I read that robins lay one egg per day until their clutch is full. Usually they lay 3-5 eggs. Today, a second small, blue egg appeared. I can't wait to see tomorrow!

Such a small thing. Something that happens all over the place every spring. Something relatively "common" yet so remarkable. Yet for me, this "common" thing is a great gift.

Lord, help me to look for the many ways You show your love and your creative power in my life every day. Thank you for loving me and for "watch[ing] over me" ~ AMEN

Monday, April 20, 2009

Learning to Trust

  • From this time many of [Jesus'] disciples turned back and no longer followed him.  
  • "You do not want to leave too, do you?" Jesus asked the Twelve. 
  • Simon Peter answered him, "Lord, to whom shall we go? You have the words of eternal life.  John 6:66-68

God is teaching me about trust.  I've really, really been hurt.  I've been hurt by FAMILY.  There are days when I doubt that I can even trust God.  

Tonight I was given the passage above (John 6:66-68) and I can honestly say that I would answer Jesus' question likewise:  " whom shall [I] go?"  There is no where else for me to turn.  

In John 14:1 Jesus says 
  • "Do not let your hearts be troubled. Trust in God; trust also in me."

Thursday, April 16, 2009

Anyone’s Life Story: ALS

ALS Awareness Month 2009

MDA's "Anyone's Life Story"

I have been chosen to be one of the 30 people with ALS nationwide to be featured in the "Anyone's Life Story" campaign. Here is a description from MDA:

"May is ALS Awareness Month.  In anticipation of this opportunity to educate the American public about ALS, the Muscular Dystrophy Association's (MDA) ALS Division is planning a national month-long campaign entitled "ALS: Anyone's Life Story". 

Each day in May, MDA's Web sites will feature one individual with ALS, along with a photo and short story, providing a snapshot of their life. ALS is a terrible disease, and raising awareness of the disease and the people it affects is vitally important. ALS affects women, men, mothers, sons and friends. ALS, unfortunately, can become "Anyone's Life Story".

"Anyone's Life Story" will present snapshots of individuals with ALS in a month-long, Web-based awareness campaign. MDA will promote the series nationwide, and with media outlets in your local area." 

I am honored to have been chosen to help raise awareness!

Wednesday, April 15, 2009

ALS Clinic

Yesterday I had my marathon appointment at the ALS clinic in Indy. My friend, Sharyll, and Stitch went along with me and we left my house at 0615 for my 0815 appointment. The first thing I noticed is that there were MANY people (inner-city hospital clientele) who are afraid of Stitch. Frankly, I find it somewhat amusing. He IS a BIG black dog, but how can you be afraid of a dog whose tongue is hanging out and whose tail is happily wagging????? He almost looks like he's smiling! The inner-city IS a different culture…that's all I can say.

How can there be a neurology clinic facility without power door entry? Well, there is one… I'm glad Sharyll was with me! I seriously think that everyone ought to spend an entire day in a wheelchair (without "cheating") once in their lives. It would change the world.

First, I was "checked in" … with questions about my functioning (there is an ALS "Functional Rating Scale"… my score is about 27 out of a possible 40). Next I saw the speech therapist and dietician. Basically I was encouraged to eat an afternoon snack (vs. going from 11am to 5pm w/o eating) and to do "relaxation exercises" before speaking so that my voice won't be so strained.

The respiratory therapist did my lung functions and I am doing great. She said I am the "poster child for BiPAP"... meaning that my BiPAP has allowed my breathing muscles to rest well enough that my respiratory function is being preserved. That was good news.

My "usual" neurologist wasn't there so I saw one of his colleagues. I liked him and felt that my issues were "heard" and discussed thoroughly without rushing. I'm going off of 2 meds and starting 2 new ones with hopes that some of my troubling symptoms can be diminished. One thing we discussed at length is how having "slow progression" is not always the good thing that people assume. It was interesting for me to hear that he often finds that people with slow progression have a more difficult time coping than those with rapid progression. It makes sense to me. To me, "slow progression" feels akin to having 100% body surface area, third-degree burns only not all at once…you get to get burned again day after day, one part at a time.

Next I saw the "crowd": the "Physical Medicine and Rehabilitation" doctor, the physical therapist, occupational therapist, orthotist (guy who does braces) and "durable medical equipment" guy. No big surprises there. I'm weaker on my left side; I was given a soft c-collar for head support when I'm tired. I got some "dycem" (sticky rubbyer-ish stuff that keeps things from sliding around) a "rocker-T knife" to cut food with. The P.T. recommended that I get a bed rail to help with turning in bed and getting out of bed. When Amy inquired on that for me today (I have an RX), she was told that Medicare/Medicaid won't pay for a bed rail because "eventually [I'll] need a hospital bed anyway". Welcome to socialized medicine.

After clinic I had lunch in the Riley Hospital cafeteria with my friends Ben and Sarah (I worked with them at Methodist). It was awesome to see them!! Of course, Ben, Sarah and Sharyll had to all compare their iPhone applications. It was funny! Sharyll has an app that "farts", Sarah has a "shotgun" that actually "cocks" and "fires" when you move the phone, and Ben has a virtual "light saber" complete with background music!

Then it was an excruciatingly-tiring, 3-hour journey home (the trip normally takes about 1.5 hours) since the service who transported me had to pick up another patient in Carmel "on the way" back to Muncie. All in all, it was a 12-hour adventure.

Stitch did great all day and he ate up all the attention (from the people who weren't afraid of him!). He was a great distraction for Sharyll and me during the exam-room waits between visits from specialists. He didn't even fart too much! J

Last night, my wonderful stylist, Terri, came over and colored and cut my hair. I was exhausted but so grateful to her for doing it. She did a great job and it is so nice to look in the mirror and see stylish hair! She is a GIFT!!!

Today I am tired. What a shock.

More later. Love, Claudia

Saturday, April 4, 2009

Spring, Please!!

Why is it so HARD to wait?! Spring… balm for the wounds of January, February and March…sunny, mild days…flowers…GREEN. How I am ready for Spring! Well, wait, I must L

From WTHR Indianapolis today: "Bottom line to this forecast... enjoy today! Highs will reach the low 60s with mostly sunny skies. Tonight clouds will be on the increase ahead of our next storm system that moves in Sunday. Showers and storms are likely Sunday, some could be strong or severe. Then Monday, a chance of snow!"

Bah, humbug! Think spring!!

Sunday, March 29, 2009

The Black Hole

I'm there….

The Black Hole
TGIF Today God Is First Volume 2, by Os Hillman

"My grace is sufficient for you, for my power is made perfect in weakness" (2 Corinthians 12:9).

On February 20, 1962, at 9:47 A.M., the spacecraft Friendship 7 rose on a pillar of fire, piloted by lone astronaut John Glenn. Leaving the coast of Florida far behind, the space capsule orbited the earth three times, traveling 81,000 miles in less than four hours. As the craft began its descent from space, mission controllers in Houston received a warning signal. A sensor indicated that the capsule's heat shield was in danger of detaching. If the heat shield came loose during reentry, the capsule would burn like a meteor--and John Glenn would die.

Because radio waves cannot penetrate plasma, the spacecraft experienced a total communications blackout--what astronauts and mission controllers call a "black hole".

The minutes crawled by and the suspense mounted in the Houston control room. NASA engineers felt totally helpless. Finally, after five minutes of silence, mission controllers heard Glenn's voice crackling over the radio: "Friendship 7 to Houston?"

Shouts of joy shook the control room. John Glenn was coming home. Although neither Glenn nor the mission controllers knew it at the time, the heat shield was absolutely firm and reliable. The fears for John Glenn's safety during his black hole experience were unfounded.

If you've ever been through a major crisis, you probably know what a communications "black hole" feels like. While you are in the pit of adversity, you feel that your world is collapsing, that your life is out of control--and that God is silent. The silence of a black hole is deafening. You feel isolated and alone. You question God's love, His care for you, and even His existence.

But even when it seems that God is distant and silent, your "heat shield" is still there, firm and reliable. In your black hole experience, God is teaching you to go deeper into your relationship with Him. You may think that your life is out of control and burning like a meteor, but in reality God, your heat shield, still protects you from the fiery forces that surround you.

Wednesday, March 25, 2009

Mass email from "Margie's Daughter"

I just received a mass email.  Nice way to find out your mother is in a nursing home, but hey, at least she's apparently happy:

To all of Margie's "Presto" friends and family, just to let you know the latest news...
We recently disconnected the Presto service at Margie's request, and we are now unable to provide the service since Marge has moved into a skilled nursing facility in the ****** area this past Monday, March 16th.  If you would like to correspond with Margie, I'm sure she would LOVE to hear from you - so please feel free to send her cards or letters via U.S. Mail care of my address which is as follows:
Margie ****
c/o [my sister]

I will be sure to deliver Margie's mail to her ASAP at her new home since we visit daily.

Margie is doing GREAT - and she's adjusting to her new home amazingly well!!!  She's loving the specialized attention - and she's enjoying such things as being personally served three hot meals a day!  I've had lunch and dinner with Margie several times now, and we both think their food has been really good!  I personally think their dinner rolls taste like King's Hawaiian bread!  And would you believe the nurses have even asked if she would like coffee or hot cocoa when she's finished her meal! 
Perhaps as a "sign" or a positive twist of fate, when we visited on Saturday, March 14th to have Margie pick out her room, she even enjoyed three of her favorites at lunch - a hamburger, MILK, and ice cream!!!!   (For those of you who may not know...Margie sometimes calls herself "Wimpy" as seen in the old Popeye cartoons...and she loves milk so much she's been know to drink 2 1/2 gallons in one week!!!!  According to Margie, "It's the best drink in the World!")  :-)

We're getting to know Margie's sweet, new roomie, Willie - and her wonderful family members as well.  They even came into the dining room to introduce themselves to us before we'd even finished our lunch the first day Margie visited!  They heard Margie might be Willie's new roomie - and they wanted to come say "hi"!  A warm welcome, indeed!
Margie has started daily physical therapy and enjoys getting "out" and even referred to coming back to her room as coming back "home".  She's adjusting well - and was even laughing as we reminisced and talked about old times at dinner in the dining room the other evening.

Each day Margie has been happy - and as each day passes, her room is taking on her personality as we decorate it with her personal decor items, photos and belongings.

As Margie's hearing has deteriorated over the last couple of years, telephone usage has become quite difficult.  So please write to Margie - and I'm sure she'll be thrilled to hear from you.

All the best,

***** ******
Margie's Daughter


Tuesday, March 17, 2009


My gmail account has been hacked so I apologize if you got email "from me" that is spam. I've taken steps to re-secure my account and hopefully that will be then end of it.

I am stunned by the crazy people in this world. Be safe out there. Love, Claudia

Sunday, March 15, 2009

Counting Blessings

I appreciate all the words of support that I've received since my last post. I know that some things are ugly but true and I've found that some things are toxic to keep bottled up.

I am continually amazed at the grace and love that people show me. I am far from perfect and, like the rest of us sinners, deserve nothing but punishment from a just God, but He is also merciful, and for that, this sinner is grateful.

I am so blessed to see my little boy and his "bwak wab" lay their heads down next to one another each night. Stitch is truly an angel with fur on. His gifts to us are God's gifts to him: his patience, love, energy and intelligence. Thank you to those of you who actively helped bring him home and to those of you who continue to support us as we strive to give him the care he needs.

I am blessed to have friends, old and new, who will stand beside me and say "I love you" even when I am unlovable.

I am blessed to have the vision that people come into our lives for a reason, a season or a lifetime. And that whichever it is, that person's presence is a part of the bigger picture.

I am blessed to have wonderful children who love me unconditionally.

I am blessed to live in a free country, where I can speak my mind (as I often do), and worship freely.

Count your blessings… I'm still counting mine. Love, Claudia

Monday, March 9, 2009

Warning: Dirty Laundry Ahead

WARNING: Dirty laundry ahead. Continue at your own risk. Please skip this if you are wearing rose-colored glasses.

I've had a pretty significant surge in progression since the first of the year. No new symptoms, but the old ones are definitely worse. Although the "experts" say that ALS has a "linear progression" I see myself having plateaus and 'spurts'.

I have no doubt that the stress of the past few months has made my symptoms worse. I'm not sleeping well, which I know makes things worse. To top that off, my sister decided to inform me last September that she is "too stressed" (taking care of my 82-year-old mother with Alzheimer's) to hear about "[my] problems" and she doesn't have "time or energy" to update me on Mom, so communication has been severed. Both she and my mother live more than 1000 miles away, and the only news I have gotten since September has been FROM my mother via voicemail (I can't speak on the phone). Unfortunately, it is difficult to know what is really going on due to my mother's confusion and memory-lapses. Without my sister being willing to "fill in the gaps" I've been left to speculate about exactly what is going on. My mother lives in an apartment for senior citizens, but it is not "assisted living" so it is hard for me to know if she is eating adequately, getting her medicine, etc. Is she REALLY out of food or has she FORGOTTEN that it's there?...stuff like that. The last time I got any information on my mom's condition (other than from my mother who has difficulty knowing what day it is) was in SEPTEMBER.

The KICKER here is what happened recently. My mother called and said she had to move to a motel "for a while" because there was a leak in her apartment. Come to find out (and this was substantiated by a call to the apartment manager) that she was in La Quinta for one week and that, according to her, she was left there with a 4 lb. jar of peanut butter, a loaf of bread and NO MONEY. THEN she told me that on day "5" my sister left for HAWAII! At that point I had no idea how long my mother would be in a motel (nor did the apartment manager). My sister never contacted me to let me know what was going on with mom.

This week, my sister shut off my mother's "Presto" system (an email receiving/printing device) that I used to send email to Mom AND cut off Mom's long distance privileges. My sister glibly stated, "Mom's long distance has also been blocked… so to talk to her you will need to call her." AS IF my sister isn't aware that I cannot talk on the phone!

I emailed and asked my sister to reinstate mom's long distance phone service. I have been able to reach my mother once since then.

All of this is just a perpetuation of the dysfunction of my family of origin. I've repeatedly asked my mother to move to Indiana over the past 20 years (and again as recently as 2 weeks ago) but she refuses.

I have no other family…so FRIENDS, you're IT. I refuse to "play the game" and I'm outcast and frankly, it's just as well I guess. It is just hard to know that I'm on my own, without a spouse or family support, facing ALS. I pray for the grace to keep my head high and live life to the fullest of my ability.

If you've made it this far, thanks for letting me "vent". I have bottled up the ugly parts of my life and tried to be "all-happy, all-singing" for decades but I'm realizing that I am who I am, and if you love me, you'll love me. For those of you who still do……..thank you. I love you too!

Thursday, February 19, 2009

ALS Hates “Happy”

I just read a quote from a PALS (person with ALS): "ALS hates happy"….I have been trying to keep a PMA (positive mental attitude) but I think I'm losing the fight. The past month and a half I've taken a downward slope in my progression….nothing NEW, just "the same, but worse." What makes it harder is that there are some things that would make my quality of life much better but I can't afford them. Now, I'm not talking things like a vacation (although that would certainly give me something to look forward to and WOULD increase my quality of life…although I'd rather just be able to go back to WORK!). I'm on oxygen at night now in addition to my AVAPS (non-invasive ventilator). I had hoped it would help me sleep better, but no such luck. Sleeping with a mask on is hard anyway (as any FEMALE with a CPAP will attest…I think men can sleep anywhere under any circumstances, so they don't count). Having the mask tethering you to a gizmo is a pain. Having the tether be 1" corrugated tubing (that isn't comfortable to lay any body-part on) is less-than-pleasant. Now add the fact that my joints and neck hurt…and turning over or moving in bed is hard. What that all adds up to is my sleep SUCKS. Meds aren't even working anymore. I'm more tired that I should be, and I was tired enough to begin with. I try to nap every day but that just takes more "life" out of life. I need an adjustable bed that has memory foam so that I can comfortably stay on my back in one position all night.

We need a vehicle that is suitable for all of us. We have been given a cargo van converted with a wheelchair lift, but Christopher cannot safely ride in it. After checking with several dealers and body shops we've been told that there is nothing that can be done to remedy the situation. All I want to be able to do is go out with my son!

It is bad enough having ALS and being without a spouse-caregiver, but life is getting really difficult and discouraging. Other PALS (persons with ALS) complain that they "spend all their retirement" on ALS-related expenses. I'm growing less sympathetic to that complaint. I'd gladly spend any retirement I have to be able to enjoy the time I have left. I have no retirement to spend.

If I sound like I'm having a complain-a-thon, I am. I've been stoic as long as I can. I am angry about having ALS and angrier that I am STUCK staring at my walls all day long. This is NOT a LIFE.

I apologize for the negativity. I'd love nothing better than to be able to work harder to meet the needs of my family…"pick up an extra shift" as it were. What would you do if you were in my situation? ALS hates "happy"………..

Tuesday, January 27, 2009

An Obituary for a Dear Friend

Today we mourn the passing of a beloved old friend, 'Common Sense', who has been with us for many years. No one knows for sure how old he was, since his birth records were long ago lost in bureaucratic red tape. He will be remembered as having cultivated such valuable lessons as:

Knowing when to come in out of the rain; why the early bird gets the worm; Life isn't always fair; and maybe it was my fault.

Common Sense lived by simple, sound financial policies (don't spend more than you can earn) and reliable strategies (adults, not children, are in charge).

His health began to deteriorate rapidly when well-intentioned but overbearing regulations were set in place. Reports of a 6-year-old boy charged with sexual harassment for kissing a classmate; teens suspended from school for using mouth wash after lunch; and a teacher fired for reprimanding an unruly student, only worsened his condition.

Common Sense lost ground when parents attacked teachers for doing the job that they themselves had failed to do in disciplining their unruly children.

It declined even further when schools were required to get parental consent to administer sun lotion or an Aspirin to a student; but could not inform parents when a student became pregnant and wanted to have an abortion.

Common Sense lost the will to live as the churches became businesses; and criminals received better treatment than their victims.

Common Sense took a beating when you couldn't defend yourself from a burglar in your own home and the burglar could sue you for assault.

Common Sense finally gave up the will to live, after a woman failed to realize that a steaming cup of coffee was hot. She spilled a little in her lap, and was promptly awarded a huge settlement.

Common Sense was preceded in death, by his parents, Truth and Trust, his wife, Discretion, his daughter, Responsibility, his son, Reason.

He is survived by his 4 stepbrothers; I Know My Rights; I Want It Now; Someone Else Is To Blame; I'm A Victim.

Not many attended his funeral because so few realized he was gone. If you still remember him, pass this on. If not, join the majority and do nothing.