March 10, 2007 - Spring is trying to come to Indiana. Right now, at 5:30 PM it is 53 degrees with a light wind. Earlier, while breezy, the sun was shining and it was rather pleasant outside. Phillip is here today and earlier, Amy, the boys and I had a "picnic" lunch out on the back patio. Nothing fancy, but we breathed some fresh air and saw a little sun. After we finished our PB&J's, the soccer ball came out and (with significant grumbling from Phillip) we "kicked" it around. I was pretty proud of myself...actually got up and walked around in the yard a little and even kicked the ball once or twice...then I got ambitious and Christopher and I went around to the front of the house...the flower bed in front was full of dead foliage from last fall, and I began to pull up some of the easier-to-pursuade detritus. It wasn't long though, before I was feeling like I just couldn't keep standing up without leaning on something. At first I tried the rake that I had grabbed to help clear the flower bed of the 'junk', but I immediately realized that rakes aren't much help when you want to "lean".
On Thursday (the 8th) I went to see my friends Judy and Tim at Riley for my wheelchair fitting. As always it was a pleasure to see them (Judy is an OT who specializes in wheelchair fitting and Tim, well, he's the "tool man" ... or as I like to call him.. the MIRACLE worker when it comes to wheelchair adjustments and modifications!). Anyhow, while I was there Tim gifted me with a walker that had been "longing for a home" for quite some time. TODAY, I gave the walker it's first "test"...there in the front yard, I was leaning on the walker and trying to "particpate" in the yard work. Now, suffice it to say that it isn't easy to get much done with Phillip and Christopher "helping" on a GOOD day...and I quickly realized that I had bitten off more than I could chew. Amy was great to jump in and "pursuade" Phillip to help with gathering the dead foliage. Christopher was content (for about 3 mintues) to just walk with me (and my walker) down the sidewalk. Eventually, even this was too tiring for me (we made it past the distant property-line of the house next door!) and I "sat" while Christopher chopped on and dug at the only remaining pile of "snow" (more like dirty ice pellets) obscuring the sidewalk. While we were enjoying our outdoor activities, several of our neighbors were coming and going.
Mind you, we live in a nice, suburban neighborhood, full of young families with the 1.3 children and the 2.4 cars they're supposed to have. Last evening (yesterday was warmer than today) there were probably 15 children (ages 1-10) and 8 adults in the street, gathered together just enjoying being outside for the first time in months. By that time of day (6 PM) though, our day is "over"....Christopher is in near-to-full meltdown mode from fatigue (and so are we!) so all I could do was watch the social gathering from my window with envy.
Today, as the neighbors passed by our home...with my "family" all outside, all I saw was averted gazes. We were "invisible"...in this "friendly" neighborhood where everyone waves at everyone else when they drive by...there were no waves, no greetings, not even any curious stares. I'm not sure why we were "invisible" today, although I have my suspicions. And, yes, it was obviously an intentional act on our neighbors' part to ignore us.
My suspicion is that we were "invisible" because we are "different". Maybe they think Amy and I (two adult women living in the same house) are gay (although I doubt they think that about the two young-adult men who rent the house next to us on the south)...maybe it was "all those disabilities" (two obviously mentally "challenged" boys and a woman who "looks fine" but talks like a drunk and uses a walker).
Regardless of the "why" I can tell you that it bugged me. Next time you see someone "different" I hope that YOU just take a second to share a quick but sincere smile. It is amazing what that simple act means. Love, Claudia
Thursday, March 15, 2007
Porches
March 2, 2007 - The wind is howling outside....Indiana spring is around the corner. I am SO ready for warmer, sunny weather. I am excited that this year I might be able to spend some "leisure" time outside enjoying the sun and the breeze. My dream house has a big 'ole porch that is about 10 feet deep...plenty of room for a few rocking chairs, a wicker loveseat set and maybe a porch swing. I love to sit on a porch...something that is missing on almost every house built after 1930 it seems. I love our subdivision, but everyone works all day and when they get home they're too busy working at home to just "set a spell". Now, I realize I sound like a grandma Moses here, but I've longed for the front porch moments for as long as I've lived away from my parent's home. Especially with hyperactive autistic kids, the serenity of a porch just sounds that much more appealing.
Years ago, when Christopher was 2 and I was a full-time student at Ball State, we lived on a house on West 5th Street in Anderson. Now, those of you who know Anderson know that this is by far not the WORST part of town, but it is far from the best. But the wonderful thing there (besides having the world's greatest landlord, Tim Basey) was that the house had character. The house was built in the 30's or 40's and had a front porch...not the porch of my "dream house" but a nice-sized deep porch. We put a gate up at the top of the stairs to the porch and Christopher (who didn't walk until after he was 2) could crawl around in relative safety while we sat, had a glass of tea or just watched the world go by. It was nice....relaxing and some of the best memories I have of that house were of that porch. Unfortunately, the area surrounding the house wasn't the greatest, and within less than a year there had been several serious crimes committed within a few blocks. The final straw was when Amy stepped out the front door with Christopher to find the police, guns drawn, making a felony arrest right in front of the house....instructing her to "go back inside...NOW!". Time to move and, well, let's just say that the move (to Muncie, so I'd be closer to school and have more time with the kids) wasn't a move "up" in terms of housing. But I remember the porch on 5th Street. And when I think of spring, I think of sitting on a porch with the birds chirping and the breeze blowing... only this time in my imagination I am in a motorized wheelchair. I can't sit in the porch swing or rocker. But I can still take in the sights, sounds and scents of spring. I hope that by the time I'm in that wheelchair full-time, I have a porch like that to retreat to.
I am so grateful that I now have time to stop and look forward to spending time doing those things I didn't have time for when I was working 2 or 3 jobs just to make ends meet. I have so much to be thankful for!! Much love, Claudia
Years ago, when Christopher was 2 and I was a full-time student at Ball State, we lived on a house on West 5th Street in Anderson. Now, those of you who know Anderson know that this is by far not the WORST part of town, but it is far from the best. But the wonderful thing there (besides having the world's greatest landlord, Tim Basey) was that the house had character. The house was built in the 30's or 40's and had a front porch...not the porch of my "dream house" but a nice-sized deep porch. We put a gate up at the top of the stairs to the porch and Christopher (who didn't walk until after he was 2) could crawl around in relative safety while we sat, had a glass of tea or just watched the world go by. It was nice....relaxing and some of the best memories I have of that house were of that porch. Unfortunately, the area surrounding the house wasn't the greatest, and within less than a year there had been several serious crimes committed within a few blocks. The final straw was when Amy stepped out the front door with Christopher to find the police, guns drawn, making a felony arrest right in front of the house....instructing her to "go back inside...NOW!". Time to move and, well, let's just say that the move (to Muncie, so I'd be closer to school and have more time with the kids) wasn't a move "up" in terms of housing. But I remember the porch on 5th Street. And when I think of spring, I think of sitting on a porch with the birds chirping and the breeze blowing... only this time in my imagination I am in a motorized wheelchair. I can't sit in the porch swing or rocker. But I can still take in the sights, sounds and scents of spring. I hope that by the time I'm in that wheelchair full-time, I have a porch like that to retreat to.
I am so grateful that I now have time to stop and look forward to spending time doing those things I didn't have time for when I was working 2 or 3 jobs just to make ends meet. I have so much to be thankful for!! Much love, Claudia
The Spoon Theory
February 16, 207 - Life is different now...of course, my life was different than 'most' before ALS....raising children with special needs changes even the most basic day-to-day tasks. Not that life is WORSE, but it is different. Today I stumbled upon a story that helps explain how my life was different even before ALS and especially how it is different now. The story is called "The Spoon Theory" and it was written by a young woman with Lupus. I encourage you to read the story by clicking here (this is a .pdf document and you will need the free Adobe Reader to access it). And the next time you face a choice about what to do...think about the number of "spoons" you have in your life. What the story doesn't discuss is how those around us can share their "spoons" with us. This is a perfect time for me to thank those of you who have taken the time and effort to "lend a spoon"...in so many different ways. There are so many things that you may take for granted that we no longer have the luxury to.... Now, make NO MISTAKE (!) I DO NOT WANT PITY from ANYONE. I have a wonderful, rich life full of blessings! But, sometimes, I do need help...and that need will only increase as my ability to function declines. I am grateful to those of you who choose to help....the co-worker and neighbor who just stops by with jugs of distilled water for my BiPAP because she knows I need it every night...the co-worker who mowed my yard (before the deep freeze hit!)....the friend who stopped by just to say "hi" and took time to play with Christopher....the friend and co-worker who cleaned my bathrooms and of course the friends and strangers who have donated as well!!! There is no gift too small. You bless me with an email or an IM and I need that friendship as much as we need material and tangible help. THANK YOU!
I hope you'll take the time to read "The Spoon Theory" and that it reminds you of all the blessings you have in your life! Don't take your "spoons" for granted! As the author of "The Spoon Theory" says: “I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.” Love, Claudia
I hope you'll take the time to read "The Spoon Theory" and that it reminds you of all the blessings you have in your life! Don't take your "spoons" for granted! As the author of "The Spoon Theory" says: “I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.” Love, Claudia
News Update
February 13, 2007 - For those of you not in central Indiana or the upper midwest...yes, the weather here today is the PITS...at my house we're getting snow and sleet with gusty winds and near-white-out conditions at times. Good day to stay HOME! ;)
Speaking of home...my mom is home from the hospital. Everything that could be emergent checked out "OK". She's had a rough month....and I'm sure the stress would be getting the best of any of us under the circumstances!
I'm feeling pretty well today...just tired, but it is a great "nap" kind of day (lucky me!).
I'll post more later. Love, Claudia
Speaking of home...my mom is home from the hospital. Everything that could be emergent checked out "OK". She's had a rough month....and I'm sure the stress would be getting the best of any of us under the circumstances!
I'm feeling pretty well today...just tired, but it is a great "nap" kind of day (lucky me!).
I'll post more later. Love, Claudia
The "Champions"
"The Champions"
February 12, 2007 - Well, all the build-up and POOF...my wheelchair fitting appointment today was cancelled because the OT that was doing the assessment broke her leg (what a LAME excuse!)...and tomorrow's ALS clinic was cancelled because of the freakin' blizzard we are supposed to get. SO. Back to square one. I'm glad there is no urgency in getting things, because the "system" knows no sense of urgency!
My speech has been really bad today. On really bad days, along with the slurring, I feel like the back of my throat has just "collapsed"...and I talk really nasal and can't articulate and it is very annoying (I think I sound like people used to with cleft lip...back in the old days before they did good repair...YES, I'm old, I admit it!)
Speaking of old...I had a fun experience in WalMart the other day. I was walking along in the health and beauty (LOL) section and a lady was handing out samples...she stops me and asks if I'd like a sample of the new Dove product...I say "sure" and she proceeds to explain that this new product is Dove Pro-Age and it is the new line for WOMEN OVER 40! Now, I AM over 40, but not THAT much (OK..I'm 45) and I didn't think I look THAT OLD!!! WAHHHHHHH! You know my favorite saying is "It's not the years, it's the miles"!
My mom is still in the hospital, and I have no real idea what is going on since I can't talk on the phone and I'm getting all the medical info 4th hand (doctor---->my sister-->Amy--->me). It is so frustrating not to be there. Last night there was talk of a "TIS" according to Amy...and I'm thinking, "do they mean TIA or is this something else???". Amy and my sister are both really trying to keep me informed...but medical jargon is not their 'native tongue' like it is mine and I, of all people, understand how hard the jargon can be to understand!
Christopher has had a whiny, grumpy day. I can't tell what is wrong with him....he has big black circles under his eyes, but no other real symptoms. If he could only tell me!
I'm SO proud of Phillip and his basketball team!
My speech has been really bad today. On really bad days, along with the slurring, I feel like the back of my throat has just "collapsed"...and I talk really nasal and can't articulate and it is very annoying (I think I sound like people used to with cleft lip...back in the old days before they did good repair...YES, I'm old, I admit it!)
Speaking of old...I had a fun experience in WalMart the other day. I was walking along in the health and beauty (LOL) section and a lady was handing out samples...she stops me and asks if I'd like a sample of the new Dove product...I say "sure" and she proceeds to explain that this new product is Dove Pro-Age and it is the new line for WOMEN OVER 40! Now, I AM over 40, but not THAT much (OK..I'm 45) and I didn't think I look THAT OLD!!! WAHHHHHHH! You know my favorite saying is "It's not the years, it's the miles"!
My mom is still in the hospital, and I have no real idea what is going on since I can't talk on the phone and I'm getting all the medical info 4th hand (doctor---->my sister-->Amy--->me). It is so frustrating not to be there. Last night there was talk of a "TIS" according to Amy...and I'm thinking, "do they mean TIA or is this something else???". Amy and my sister are both really trying to keep me informed...but medical jargon is not their 'native tongue' like it is mine and I, of all people, understand how hard the jargon can be to understand!
Christopher has had a whiny, grumpy day. I can't tell what is wrong with him....he has big black circles under his eyes, but no other real symptoms. If he could only tell me!
I'm SO proud of Phillip and his basketball team!
Well, I'm off to indulge my once-a-week, can't-live-without-it moment of TV and watch "24"! Love, Claudia
What's Happening in My World Today
February 11, 2007 - News from my world...I've spent the weekend putting a dent (barely) in my emails that need to be replied to, so IF YOU HAVEN'T gotten a reply to an email that you sent last month (!) please be patient...I'll get to a personal reply soon.
My mother was admitted to the hospital last night in San Diego (Poway) California (where she is living with my sister). Evidently, after returning home from dinner with friends my mother complained of chest and back pain. My sister did ABSOLUTELY the right thing by calling 9-1-1 and having mom taken to the ER. So far, her heart is checking out fine, although this admission has moved up her previously scheduled echocardiogram (in addition to Atrial Fibrillation, 2 bypass surgeries - the first in 1982 and the second a year ago this month - and an implanted pacemaker, mom also has a problem with her aortic valve..). I'm sure that all the stress she is under is not helping anything. I wish I could be there to help, and to give her a big hug.
Phillip had a Special Olympics Basketball Tournament yesterday and his team won!!!!!!!!!!!!! I am SO excited for him! He is loving being a part of the team and the coaches and "peer buddies" that play with the kids are awesome!
Christopher has been super clingy this weekend. I can't figure out if he is getting sick or if he's just tired. It is also hard to know what he understands about my ALS. He said he had a dream last night that I was sick and that he didn't want to go to sleep tonight...then he promptly had an asthma attack....he is finally asleep now!
I'm doing well. I have my "wheelchair fitting" appointment tomorrow afternoon. I was supposed to go to the ALS Clinic on Tuesday but the weather service is predicting significant snowfall overnight tomorrow night (up to 12") with blowing and drifting, so I opted to cancel and reschedule rather than be in the morning rush-hour traffic with that weather!
I hope that you'll email me and say "hi" when you get the chance. Love, Claudia
My mother was admitted to the hospital last night in San Diego (Poway) California (where she is living with my sister). Evidently, after returning home from dinner with friends my mother complained of chest and back pain. My sister did ABSOLUTELY the right thing by calling 9-1-1 and having mom taken to the ER. So far, her heart is checking out fine, although this admission has moved up her previously scheduled echocardiogram (in addition to Atrial Fibrillation, 2 bypass surgeries - the first in 1982 and the second a year ago this month - and an implanted pacemaker, mom also has a problem with her aortic valve..). I'm sure that all the stress she is under is not helping anything. I wish I could be there to help, and to give her a big hug.
Phillip had a Special Olympics Basketball Tournament yesterday and his team won!!!!!!!!!!!!! I am SO excited for him! He is loving being a part of the team and the coaches and "peer buddies" that play with the kids are awesome!
Christopher has been super clingy this weekend. I can't figure out if he is getting sick or if he's just tired. It is also hard to know what he understands about my ALS. He said he had a dream last night that I was sick and that he didn't want to go to sleep tonight...then he promptly had an asthma attack....he is finally asleep now!
I'm doing well. I have my "wheelchair fitting" appointment tomorrow afternoon. I was supposed to go to the ALS Clinic on Tuesday but the weather service is predicting significant snowfall overnight tomorrow night (up to 12") with blowing and drifting, so I opted to cancel and reschedule rather than be in the morning rush-hour traffic with that weather!
I hope that you'll email me and say "hi" when you get the chance. Love, Claudia
Update
February 9, 2007 - Well, first things first: THE COLTS WON THE SUPERBOWL!!! To say the city of Indianapolis was excited was an understatement! Check out my "photos" page for a picture showing how excited CHRISTOPHER was! ;)
I'm doing great physically...no major changes....just the slurred speech, shortness of breath, choking episodes and fatigue (probably the worst thing). I have chosen an augmentative communication device and the process of getting the necessary paperwork/determination of benefits/prior authorization from insurance has begun. After much research and trying several devices I chose a Quick Glance Eye Gaze System model 3SH. At a cost of more than $11,000 I'm counting on it to meet my communication needs for a LONG time! The tablet system I chose can be used without the eye tracking system as a touch-screen system until the eye-gaze feature is needed, so the system can adapt as my functioning level changes. I can also "voice bank" on the device, recording words and phrases in my own voice for playback later. This will be especially important, since I am unsure how Christopher and Phillip will respond (if at all) to a "voice" that is not really "mine".
Next order of business is finalizing my decision on a power chair. I have an appointment on Monday the 12th with an OT who specializes in wheelchair fitting - Judy Atkins. I've known Judy for a very long time...initially meeting her when I was a basic EMT who would transport nursing home patients (mostly children) to her clinic at Riley for wheelchair fittings and adjustments. Since that time she has been the OT that fitted both Phillip and Christopher for chairs (Phillip no longer needs his...it was mostly for situations where he might become non-compliant...basically having a "sit down strike"...when he was too big to carry!). Christopher still uses his stroller-style push chair for any outing that entails walking long distances because he fatigues (and he's too big to carry too!!!). So, suffice it to say I have had years of trust in Judy's expertise and I am anxious to hear her recommendations/suggestions, since I can only marginally conceive of the needs I might have when I can no longer move voluntarily.
Finances are a bit stretched this month. I had been getting SSI checks for both Christopher and myself around the first of the month but this month my LTD through PHI kicks in....HOWEVER...LTD doesn't pay until the END of the month (so I won't get a check until the 28th of Feb) BUT, since the money will be received in February, Social Security counts it as FEBRUARY income and thus discontinued our SSI benefits...leaving us without any payments between January's SSI (Jan. 1st) and February's LTD (Feb. 28th). Crazy system!
Aside from a few bills that I am just holding off on until after Feb. 28th, we really are doing OK, though. We have plenty of food in the pantry, and this frigid weather has assured that we don't venture out unless absolutely necessary (saving on gas money!!). And there is plenty to do here at home!
I'm trying to get caught up on answering emails....I think I'm up to emails I received on January 9th or so...SO if you emailed and haven't heard back, it isn't that I don't love ya...I'm just running behind!
I've dropped more than a few balls in this juggling act of mine lately! Please forgive...and know that I need your love and support more than ever. Love and hugs, Claudia
I'm doing great physically...no major changes....just the slurred speech, shortness of breath, choking episodes and fatigue (probably the worst thing). I have chosen an augmentative communication device and the process of getting the necessary paperwork/determination of benefits/prior authorization from insurance has begun. After much research and trying several devices I chose a Quick Glance Eye Gaze System model 3SH. At a cost of more than $11,000 I'm counting on it to meet my communication needs for a LONG time! The tablet system I chose can be used without the eye tracking system as a touch-screen system until the eye-gaze feature is needed, so the system can adapt as my functioning level changes. I can also "voice bank" on the device, recording words and phrases in my own voice for playback later. This will be especially important, since I am unsure how Christopher and Phillip will respond (if at all) to a "voice" that is not really "mine".
Next order of business is finalizing my decision on a power chair. I have an appointment on Monday the 12th with an OT who specializes in wheelchair fitting - Judy Atkins. I've known Judy for a very long time...initially meeting her when I was a basic EMT who would transport nursing home patients (mostly children) to her clinic at Riley for wheelchair fittings and adjustments. Since that time she has been the OT that fitted both Phillip and Christopher for chairs (Phillip no longer needs his...it was mostly for situations where he might become non-compliant...basically having a "sit down strike"...when he was too big to carry!). Christopher still uses his stroller-style push chair for any outing that entails walking long distances because he fatigues (and he's too big to carry too!!!). So, suffice it to say I have had years of trust in Judy's expertise and I am anxious to hear her recommendations/suggestions, since I can only marginally conceive of the needs I might have when I can no longer move voluntarily.
Finances are a bit stretched this month. I had been getting SSI checks for both Christopher and myself around the first of the month but this month my LTD through PHI kicks in....HOWEVER...LTD doesn't pay until the END of the month (so I won't get a check until the 28th of Feb) BUT, since the money will be received in February, Social Security counts it as FEBRUARY income and thus discontinued our SSI benefits...leaving us without any payments between January's SSI (Jan. 1st) and February's LTD (Feb. 28th). Crazy system!
Aside from a few bills that I am just holding off on until after Feb. 28th, we really are doing OK, though. We have plenty of food in the pantry, and this frigid weather has assured that we don't venture out unless absolutely necessary (saving on gas money!!). And there is plenty to do here at home!
I'm trying to get caught up on answering emails....I think I'm up to emails I received on January 9th or so...SO if you emailed and haven't heard back, it isn't that I don't love ya...I'm just running behind!
I've dropped more than a few balls in this juggling act of mine lately! Please forgive...and know that I need your love and support more than ever. Love and hugs, Claudia
Me, Equipment and life
January 29, 2007 - So sorry for the long lapse in posts. I don't know how I manage to be so busy and accomplish so little! A few updates:
My mom flew to California and is staying with my sister. My sister is very fortunate to have a large, beautiful home and a room that has been converted to "Mom's place" (complete with a small fridge, microwave and coffeemaker). They have been looking at senior-citizen housing but the costs are, well, California prices and the waiting lists for vacancies are long (12+ months for most). It is so nice having Mom with my sister. I was always worring about Mom being down in Texas by herself and at least now she is near family. I wish I could be the one doing all the things for her....
I had a follow-up at Crossroads today to evaluate an augmentative communication device called the "Quick Glance" program. It is a device and software very similar to the ERICA used on the ER episode which featured an ALS patient (if you happened to see that). Basically, the program uses a device that is calibrated to track your pupils and you use your gaze as a "mouse" to move the cursor around the computer screen. Now we begin the tedious and time-consuming process of getting predetermination of benefits from my insurance (BC/BS of LA), and a "prior authorization" from Medicaid (assuming I still have it by the time the paperwork is finished!). The total cost of the Quick Glance system is more than $11,000...and that does not include the mounting devices for adding the system to a wheelchair, nor does it include any peripeherals. For those of you who are the "praying kind"....pray that insurance (BC/BS, Medicaid or Medicare...after Medicare kicks in on April 1) approves the device and pays the bulk...
I've had a few VERY "down" days recently. I'm not sure if it is just part of the "process" that I will work through, or just the (for me anyway) inevitable blues that hit in January/February and March when it is still cold and grey and there are no festivities to look forward to....I miss work tremendously, and grapple every day with the fact that I'm not involved in EMS any more. But I tell myself that life goes on, and we don't get to choose many of the twists and turns...all we get to choose is how we deal with them.
Yesterday I stopped at Starbucks with Catherine while Phillip was at Special Olympics Basketball Practice (too cool, by the way!!! I am SO proud of him!) and my cup had this quote on it:
“I was ahead in the slalom. But in the second run, everyone fell on a dangerous spot. I was beaten by a woman who got up faster than I did. I learned that people fall down, winners get up, and gold medal winners just get up faster.” ~Bonnie St. John (the second-fastest amputee skier in the world in 1984, and the first black Olympic ski medalist)
Hope that inspires YOU a little bit too...... Love, Claudia
My mom flew to California and is staying with my sister. My sister is very fortunate to have a large, beautiful home and a room that has been converted to "Mom's place" (complete with a small fridge, microwave and coffeemaker). They have been looking at senior-citizen housing but the costs are, well, California prices and the waiting lists for vacancies are long (12+ months for most). It is so nice having Mom with my sister. I was always worring about Mom being down in Texas by herself and at least now she is near family. I wish I could be the one doing all the things for her....
I had a follow-up at Crossroads today to evaluate an augmentative communication device called the "Quick Glance" program. It is a device and software very similar to the ERICA used on the ER episode which featured an ALS patient (if you happened to see that). Basically, the program uses a device that is calibrated to track your pupils and you use your gaze as a "mouse" to move the cursor around the computer screen. Now we begin the tedious and time-consuming process of getting predetermination of benefits from my insurance (BC/BS of LA), and a "prior authorization" from Medicaid (assuming I still have it by the time the paperwork is finished!). The total cost of the Quick Glance system is more than $11,000...and that does not include the mounting devices for adding the system to a wheelchair, nor does it include any peripeherals. For those of you who are the "praying kind"....pray that insurance (BC/BS, Medicaid or Medicare...after Medicare kicks in on April 1) approves the device and pays the bulk...
I've had a few VERY "down" days recently. I'm not sure if it is just part of the "process" that I will work through, or just the (for me anyway) inevitable blues that hit in January/February and March when it is still cold and grey and there are no festivities to look forward to....I miss work tremendously, and grapple every day with the fact that I'm not involved in EMS any more. But I tell myself that life goes on, and we don't get to choose many of the twists and turns...all we get to choose is how we deal with them.
Yesterday I stopped at Starbucks with Catherine while Phillip was at Special Olympics Basketball Practice (too cool, by the way!!! I am SO proud of him!) and my cup had this quote on it:
“I was ahead in the slalom. But in the second run, everyone fell on a dangerous spot. I was beaten by a woman who got up faster than I did. I learned that people fall down, winners get up, and gold medal winners just get up faster.” ~Bonnie St. John (the second-fastest amputee skier in the world in 1984, and the first black Olympic ski medalist)
Hope that inspires YOU a little bit too...... Love, Claudia
Wheelchairs, Speech Devices, News and Meltdowns
January 16, 2007 - It has been an eventful week. On the 10th I went to Crossroads for an Augmentative Communication evaluation. Basically, the appointment was intended to look at the various options I have for when I can no longer communicate verbally. The hardest part is trying to think far enough ahead to what I might need. They have amazing technology now with everything from a "switch" you can use by moving one muscle (in your foot, leg or face) to a "mouse" you activate by blinking your eyes...and even technology that actually scans what you are looking at and uses your "eye gaze" as a tracker. Of course, that all comes with the reality that at some point I will be "locked in" and unable to do anything but move my eyes...
Then on the 12th I went for a "wheelchair fitting" appointment. Again, the hardest part was even beginning to fathom what life will be like at the point when I cannot move at all..and what features I will need in a power chair (electric elevator for the legs? electric seat elevator so I can look at people at eye level? electric recline and tilt? what size motor? what size joystick? what kind of seat? what kind of headrest? footplate?)...you get the idea. A bit overwhelming.
Then this morning I found out that my mother's apartment caught fire. She is fine but she lost everything and now has no place to live. She is staying with a friend for now. I actually started for Texas today (driving) but turned around at about Franklin when Sharyll told me that the roads really are getting bad in Texas (Sharyll is there visiting her daugher and son-in-law).
On a funny note: Christopher was having a meltdown yesterday because Phillip left (he was here visiting and the departure is always a crisis for Christopher). Now, how did we calm him down?? Flipping on the TV, tuning in to the Discovery Health Channel and letting him watch "Critical Hour"....they had just gotten a sick trauma into the ER and were 'cracking his chest'. Christopher was mesmerized...like Mother, like son...LOL! Love, Claudia
Then on the 12th I went for a "wheelchair fitting" appointment. Again, the hardest part was even beginning to fathom what life will be like at the point when I cannot move at all..and what features I will need in a power chair (electric elevator for the legs? electric seat elevator so I can look at people at eye level? electric recline and tilt? what size motor? what size joystick? what kind of seat? what kind of headrest? footplate?)...you get the idea. A bit overwhelming.
Then this morning I found out that my mother's apartment caught fire. She is fine but she lost everything and now has no place to live. She is staying with a friend for now. I actually started for Texas today (driving) but turned around at about Franklin when Sharyll told me that the roads really are getting bad in Texas (Sharyll is there visiting her daugher and son-in-law).
On a funny note: Christopher was having a meltdown yesterday because Phillip left (he was here visiting and the departure is always a crisis for Christopher). Now, how did we calm him down?? Flipping on the TV, tuning in to the Discovery Health Channel and letting him watch "Critical Hour"....they had just gotten a sick trauma into the ER and were 'cracking his chest'. Christopher was mesmerized...like Mother, like son...LOL! Love, Claudia
January 9, 2007
Both my landline and my cell phone are now disconnected. Amy has a cell phone so you can call her if you have the number or you can email me via this site or via my home email.
I have a neuro appointment tomorrow at I.U. Updates later. Love, Claudia
I have a neuro appointment tomorrow at I.U. Updates later. Love, Claudia
January 7, 2007
I just read that Stephen Hawking, a famous scientist who also happens to have ALS (and has had ALS for more than 30 years) is planning to go into SPACE! http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2007/01/08/nhawking08.xml.. This is amazing to me and inspiring....the physical demands of flight are incredible, let alone the demands of space flight - on a healthy person without disabilities - the logistical challenges alone are mind-numbing! WOW.
I can't imagine preparing for a space flight....just flying to and from Texas kicked my butt....I caught the "bug" from Christopher as soon as I got home on Sunday (I was sick by Tuesday) and then on Thursday Catherine and Phillip came for a slightly extended visit. Still, I had a wonderful 4 days with all three kids here.
Phillip is so handsome, smart and funny! For Christmas he gave me a photo album of pictures of him at school. I LOVE it! Next visit he needs to sit down and tell me who the people are in the pictures with him (besides his teachers!). I tried to scan a couple of the pictures of him so that I could put them in the web page Photo Album , but my scanner is misbehaving...or rather my COMPUTER is misbehaving...LONG story but suffice it to say I NEED THE GEEK SQUAD! :)
Catherine spent much of her time here playing with Christopher. She is awesome with him. He loves imaginative play (very unusual for a child with autism) and Catherine, with her "creative writer's" mind-set is a fantastic playmate for him. He loves his "Sissy" and she loves her "baby" brother!
I enjoyed time with each of the kids, even though this stinkin' virus was ravaging Amy, Christopher and me. This bug has been a nasty one and I feel very blessed to have fought it off and to have had Christopher fight it off with no pneumonias! Of course, the nebulizer was running a LOT during the past week! I'm just glad to have that here at home to use! And I am so grateful that Amy is here to be "mom" for the kids when I need to go rest. She is amazing!!!!
Sharyll came down to visit while we were sick, as well....nut that she is! We warned her that we sounded like a TB ward, but she came anyway and stayed the night Thursday night and most of the day on Friday. It was great to have some time to just "hang out". She has been so busy! I cherish every sacrificial moment she gives! So great to have friends! Love, Claudia
I can't imagine preparing for a space flight....just flying to and from Texas kicked my butt....I caught the "bug" from Christopher as soon as I got home on Sunday (I was sick by Tuesday) and then on Thursday Catherine and Phillip came for a slightly extended visit. Still, I had a wonderful 4 days with all three kids here.
Phillip is so handsome, smart and funny! For Christmas he gave me a photo album of pictures of him at school. I LOVE it! Next visit he needs to sit down and tell me who the people are in the pictures with him (besides his teachers!). I tried to scan a couple of the pictures of him so that I could put them in the web page Photo Album , but my scanner is misbehaving...or rather my COMPUTER is misbehaving...LONG story but suffice it to say I NEED THE GEEK SQUAD! :)
Catherine spent much of her time here playing with Christopher. She is awesome with him. He loves imaginative play (very unusual for a child with autism) and Catherine, with her "creative writer's" mind-set is a fantastic playmate for him. He loves his "Sissy" and she loves her "baby" brother!
I enjoyed time with each of the kids, even though this stinkin' virus was ravaging Amy, Christopher and me. This bug has been a nasty one and I feel very blessed to have fought it off and to have had Christopher fight it off with no pneumonias! Of course, the nebulizer was running a LOT during the past week! I'm just glad to have that here at home to use! And I am so grateful that Amy is here to be "mom" for the kids when I need to go rest. She is amazing!!!!
Sharyll came down to visit while we were sick, as well....nut that she is! We warned her that we sounded like a TB ward, but she came anyway and stayed the night Thursday night and most of the day on Friday. It was great to have some time to just "hang out". She has been so busy! I cherish every sacrificial moment she gives! So great to have friends! Love, Claudia
January 4, 2007
What would the New Year be without a nasty cold! Right now the stinkin' virus is multiplying in the respiratory passages of our entire household. Now, THAT'S fun, (as Larry the Cable Guy says) "I don't care who ya are!". We are keeping the Kleenex corporation in business single-handedly. So, don't ya' want to come over for a nice visit !? (HaHaHaHaHa).
Besides the current ailment, things are going fine here. We had a wonderful Christmas. So many of you remembered us generously...so Christopher was able to awaken Christmas morning to gifts left from SANTA! He was mesmerized. Thank you, Santa(s)! I had all three kids here midday on Christmas and it was awesome! We shared an early evening feast with a friend who also has very little family nearby and we all felt extremely blessed to have such bounty, a warm place to live and such loving friends!
On December 28th, I flew to Dallas to meet my sister (who had flown in from the west coast). We left Dallas on the 29th and drove 4 hours to see my mother, whom I hadn't seen since she had bypass surgery last February in Houston. Mom looks great, and although she struggles with severe hearing loss and having to wear oxygen, she still gets around very well for an octogenarian. My sister and I drove back to Dallas the evening of the 30th and we all flew home on the 31st. It was a very quick trip, but it was awesome to see my mom and sister, and I think they needed to see me and understand exactly where I'm "at" in the progression of my ALS.
I am possibly enrolling in an ALS clinical trial of the antibiotic ceftriaxone (Rocephin). The study is very involved, requiring a Hickman and very, very high-dose daily infusions of the drug, but the animal model looks promising. I was scheduled to go for an intake appointment today, but because I am sick, I've had to re-schedule.
I'm still constantly amazed at the inefficiency and lack of communication in our government. Social Security has already started sending Christopher SSI checks, yet the Disability Determination Bureau (of the SSA) is "evaluating" him for a "possible disablilty" and knew nothing of the fact that he is already receiving checks. Then there is the fact that the SSA has insisted on yet another "interview" regarding Christopher "to determine his eligibility for benefits" since I am now "disabled". It seems clear to me that the mice in the maze have no idea where any of the other mice are...and have no clue about the way out!
In my dreams, I still fly and take care of patients, and when I awake I find the sense of loss hard to shake. My goal now is to find a GOAL....to replace the CFRN and my other flight-related goals. Any ideas are welcome!
May your New Year be blessed! Love, Claudia
Besides the current ailment, things are going fine here. We had a wonderful Christmas. So many of you remembered us generously...so Christopher was able to awaken Christmas morning to gifts left from SANTA! He was mesmerized. Thank you, Santa(s)! I had all three kids here midday on Christmas and it was awesome! We shared an early evening feast with a friend who also has very little family nearby and we all felt extremely blessed to have such bounty, a warm place to live and such loving friends!
On December 28th, I flew to Dallas to meet my sister (who had flown in from the west coast). We left Dallas on the 29th and drove 4 hours to see my mother, whom I hadn't seen since she had bypass surgery last February in Houston. Mom looks great, and although she struggles with severe hearing loss and having to wear oxygen, she still gets around very well for an octogenarian. My sister and I drove back to Dallas the evening of the 30th and we all flew home on the 31st. It was a very quick trip, but it was awesome to see my mom and sister, and I think they needed to see me and understand exactly where I'm "at" in the progression of my ALS.
I am possibly enrolling in an ALS clinical trial of the antibiotic ceftriaxone (Rocephin). The study is very involved, requiring a Hickman and very, very high-dose daily infusions of the drug, but the animal model looks promising. I was scheduled to go for an intake appointment today, but because I am sick, I've had to re-schedule.
I'm still constantly amazed at the inefficiency and lack of communication in our government. Social Security has already started sending Christopher SSI checks, yet the Disability Determination Bureau (of the SSA) is "evaluating" him for a "possible disablilty" and knew nothing of the fact that he is already receiving checks. Then there is the fact that the SSA has insisted on yet another "interview" regarding Christopher "to determine his eligibility for benefits" since I am now "disabled". It seems clear to me that the mice in the maze have no idea where any of the other mice are...and have no clue about the way out!
In my dreams, I still fly and take care of patients, and when I awake I find the sense of loss hard to shake. My goal now is to find a GOAL....to replace the CFRN and my other flight-related goals. Any ideas are welcome!
May your New Year be blessed! Love, Claudia
January 15, 2007
WARNING: THIS ENTRY CONTAINS GRAPHIC DETAILS RELATED TO SNOT....DISCRETION ADVISED! :-)
OK, funny story: We've all got these nasty colds...and Christopher, being the wonder that he is (and being a BOY) has discovered that there are consequences to sneezing....ONE is that you get your nose wiped (or, if you know how...which he hasn't figured out...you BLOW it) OR you find some other way to keep the snot from spewing all over your face. Up until now, Christopher had devised what seemed to be a pretty ingenious (albeit disgusting) way to avoid either the nose-wiping OR the snot spew....he would just stick two of his fingers in his nose when he sneezed. Voila! Of course, then Mom makes him go wash his hands, but that's SOP after any sneeze, right? Well, here's the kicker: ya know when you have a cold you have a LOT more mucus to deal with than your average day...and what happens when you employ the afformentioned method and there's REALLY a lot of snot? Let's just say he ran to Amy and told her to TAKE IT OUT of his MOUTH!
Hope I didn't gross you out too much, but we thought it was funny (those of you in EMS or medicine will appreciate the sick humor!). And you can't say I didn't warn you! Love, Claudia
OK, funny story: We've all got these nasty colds...and Christopher, being the wonder that he is (and being a BOY) has discovered that there are consequences to sneezing....ONE is that you get your nose wiped (or, if you know how...which he hasn't figured out...you BLOW it) OR you find some other way to keep the snot from spewing all over your face. Up until now, Christopher had devised what seemed to be a pretty ingenious (albeit disgusting) way to avoid either the nose-wiping OR the snot spew....he would just stick two of his fingers in his nose when he sneezed. Voila! Of course, then Mom makes him go wash his hands, but that's SOP after any sneeze, right? Well, here's the kicker: ya know when you have a cold you have a LOT more mucus to deal with than your average day...and what happens when you employ the afformentioned method and there's REALLY a lot of snot? Let's just say he ran to Amy and told her to TAKE IT OUT of his MOUTH!
Hope I didn't gross you out too much, but we thought it was funny (those of you in EMS or medicine will appreciate the sick humor!). And you can't say I didn't warn you! Love, Claudia
December 16, 2006
Entries TWO DAYS IN A ROW! Wow. I'm on a roll!
Today Phillip and I went shopping so he could buy Catherine and Christopher Christmas gifts. Remind me NOT to do that again! I was tired to start with..there were 9 million people at WalMart (WHAT was I thinking this close to Christmas on a SATURDAY!?) and they were all in the "Christmas Spirit" if you know what I mean ("Merry F&%ing Christmas! Now get the H#%L out of my way so I can buy my presents!" was their theme song!) And Phillip just jabbering the entire way, plus hitting me up for all sorts of things for himself (how many times can YOU say "no" "no" "no"). It really wasn't as bad as it sounds...it was good "quality time" with my son! Still, I'm glad we didn't have more to shop for!! Love, Claudia
Today Phillip and I went shopping so he could buy Catherine and Christopher Christmas gifts. Remind me NOT to do that again! I was tired to start with..there were 9 million people at WalMart (WHAT was I thinking this close to Christmas on a SATURDAY!?) and they were all in the "Christmas Spirit" if you know what I mean ("Merry F&%ing Christmas! Now get the H#%L out of my way so I can buy my presents!" was their theme song!) And Phillip just jabbering the entire way, plus hitting me up for all sorts of things for himself (how many times can YOU say "no" "no" "no"). It really wasn't as bad as it sounds...it was good "quality time" with my son! Still, I'm glad we didn't have more to shop for!! Love, Claudia
December 15, 2006
I can't believe how long it's been since I posted on here....the time just seems to get away from me and now I find that a scary thing. My life is flying by. Just today I spent an hour (an HOUR) on the phone (relay) with the Social Security Administration. They called me yesterday and left a message for me to call them. I called today and spent an entire WASTED hour giving them social security numbers, dates and places of birth, addresses, maiden names, mother's maiden names...only to have the SSA representative tell me that I needed to make an APPOINTMENT to come in to the local office because she "wasn't sure why [the SSA] had called me" yesterday! When I spoke with a supervisor (over the delightful and competent first SSA representative's objections), even the supervisor had no idea why I had been called! And it took me an HOUR to find out NOTHING! Now, you can bet that if I HADN'T called them back, they would have had found a reason to lower my (or Christopher's) benefits! That's our tax dollars at work, folks!
My irritation by the wasted time on the phone was exacerbated by the fact that Amy, Christopher and Sharyll were downstairs waiting for me to finish so we could go to the Children's Museum. We finally managed to get on the road, did a quick drive-thru at the Golden Arches and arrived at the museum just in time to see busloads of school children LEAVING! That was the best part of the delay!!! (In case you've never had the pleasure of being in a crowded place with an autistic child and 1500 screaming 2nd graders, let me just sum it up this way: BAD THING). I'm sure we looked kind of funny with Christopher in his "stroller" and me in a wheelchair. While I am still able to walk, I get so tired when I walk long distances, so the wheelchair came in handy. The only problem is that at certain points in the museum Christopher (understandably) wanted to get out of his "stroller" and play...no problem, except now Amy was chasing Christopher and Sharyll was either helping Amy and/or having to push Christopher's empty stroller...and I'm trying to wheel myself around to where I can see (good luck keeping up with an autistic kid with an attention span of -- oh -- about 0.01 second...especially in a wheelchair!). Tonight my arms are so tired and cramping from the little time that I was wheeling myself around! But it was worth it all because Christopher had a BLAST! The Children's Museum is an amazing place and we are blessed to have been given a membership by my sister last Christmas. The memories we've made there have been priceless!
Phillip is here again this weekend. Tomorrow he is going to do some work around the house to earn money to go Christmas shopping. He is so generous and giving....and SO very concerned that he buy gifts for the people he loves. I am so proud of him. School is going well in Anderson and he seems so happy. I hope to get some pictures taken with him over Christmas break! Love, Claudia
My irritation by the wasted time on the phone was exacerbated by the fact that Amy, Christopher and Sharyll were downstairs waiting for me to finish so we could go to the Children's Museum. We finally managed to get on the road, did a quick drive-thru at the Golden Arches and arrived at the museum just in time to see busloads of school children LEAVING! That was the best part of the delay!!! (In case you've never had the pleasure of being in a crowded place with an autistic child and 1500 screaming 2nd graders, let me just sum it up this way: BAD THING). I'm sure we looked kind of funny with Christopher in his "stroller" and me in a wheelchair. While I am still able to walk, I get so tired when I walk long distances, so the wheelchair came in handy. The only problem is that at certain points in the museum Christopher (understandably) wanted to get out of his "stroller" and play...no problem, except now Amy was chasing Christopher and Sharyll was either helping Amy and/or having to push Christopher's empty stroller...and I'm trying to wheel myself around to where I can see (good luck keeping up with an autistic kid with an attention span of -- oh -- about 0.01 second...especially in a wheelchair!). Tonight my arms are so tired and cramping from the little time that I was wheeling myself around! But it was worth it all because Christopher had a BLAST! The Children's Museum is an amazing place and we are blessed to have been given a membership by my sister last Christmas. The memories we've made there have been priceless!
Phillip is here again this weekend. Tomorrow he is going to do some work around the house to earn money to go Christmas shopping. He is so generous and giving....and SO very concerned that he buy gifts for the people he loves. I am so proud of him. School is going well in Anderson and he seems so happy. I hope to get some pictures taken with him over Christmas break! Love, Claudia
December 3, 2006
Phillip was here this weekend! It was so awesome to see him. It had been 3 weeks since he was here last...his father and I alternate weekends but "my" last weekend, they had arranged to go see King Tut in Chicago, so I gave up my weekend so he could go with his Dad and family. They had a great time and I was so glad that Phillip got to go, but it was great to see him this weekend!!!
Knowing how to explain my ALS to Phillip is a challenge. He is very literal...for instance, when we have a guest over and they say "Well, I've gotta go" he has been known to get up and open the front door (as if to say...OK...now go). This ISN'T because he wants them to leave necessarily, but simply because in his world words are taken literally and at face value. SO when he heard that I would die from ALS he made the logical jump and assumed it would be NOW. Trying to explain that it kills slowly, over time and that death really isn't from ALS but from complications....well, that's just too difficult to explain. I'm left reassuring him after every time I leave his sight that I'm "not dead yet". I did write him a letter trying to explain and hopefully, by reading it over and over, he can grasp the fact that my demise is not imminent.
Tonight Christopher suddenly developed a migraine, or at least I think that's what it is. He complains that his "hair hurts" and starts crying. We sat on the floor in his room, with him wrapped in my sweatshirt, and just rocked while I rubbed his back. Now, there's nothing newsworthy in this....I'm just being a "mom" and he's had headaches like this before so I'm not worried...but it suddenly occurred to me that sometime TOO SOON I won't be able to hold him and soothe him anymore. Rubbing his back won't be an option. I am SUCH a tactile person....it is going to be so hard not being able to reach out and touch him. I hope that others will still touch me....take my hand, embrace me, etc. I know that someone in a wheelchair who is a quadriplegic isn't a warm and welcoming sight...plus most people in that circumstance have no sensation.....but I will.
When that time comes I know that it will be vitally important to me to be able to sit and just watch Christopher playing. To see him in "his element" and to be a familiar part of his world, even if I'm not the "old me" anymore. I want somehow for him to know that I'm still "Mommy" and that I still hug him in my heart.
But enough of THAT! I am enjoying all the hugs and love that he'll give me NOW! I am so blessed that, because of his disabililties, he isn't the "typical 9 year old" who flinches at Mom's touch and screams "EEEEEEW" at the mere THOUGHT of mom kissing them! :) Something to be grateful for!
I actually have SO much to be grateful for. I am continuing to be amazed at the love and support of my friends. There have been some surprises....some who I was sure would be extremely supportive have been absent and/or silent, while others, who I never thought of as "close friends" have been among the first to jump up and say "how can I help?". I have a few regrets that I live with, but giving my heart to the people I care about is not one of them. Love, Claudia
Knowing how to explain my ALS to Phillip is a challenge. He is very literal...for instance, when we have a guest over and they say "Well, I've gotta go" he has been known to get up and open the front door (as if to say...OK...now go). This ISN'T because he wants them to leave necessarily, but simply because in his world words are taken literally and at face value. SO when he heard that I would die from ALS he made the logical jump and assumed it would be NOW. Trying to explain that it kills slowly, over time and that death really isn't from ALS but from complications....well, that's just too difficult to explain. I'm left reassuring him after every time I leave his sight that I'm "not dead yet". I did write him a letter trying to explain and hopefully, by reading it over and over, he can grasp the fact that my demise is not imminent.
Tonight Christopher suddenly developed a migraine, or at least I think that's what it is. He complains that his "hair hurts" and starts crying. We sat on the floor in his room, with him wrapped in my sweatshirt, and just rocked while I rubbed his back. Now, there's nothing newsworthy in this....I'm just being a "mom" and he's had headaches like this before so I'm not worried...but it suddenly occurred to me that sometime TOO SOON I won't be able to hold him and soothe him anymore. Rubbing his back won't be an option. I am SUCH a tactile person....it is going to be so hard not being able to reach out and touch him. I hope that others will still touch me....take my hand, embrace me, etc. I know that someone in a wheelchair who is a quadriplegic isn't a warm and welcoming sight...plus most people in that circumstance have no sensation.....but I will.
When that time comes I know that it will be vitally important to me to be able to sit and just watch Christopher playing. To see him in "his element" and to be a familiar part of his world, even if I'm not the "old me" anymore. I want somehow for him to know that I'm still "Mommy" and that I still hug him in my heart.
But enough of THAT! I am enjoying all the hugs and love that he'll give me NOW! I am so blessed that, because of his disabililties, he isn't the "typical 9 year old" who flinches at Mom's touch and screams "EEEEEEW" at the mere THOUGHT of mom kissing them! :) Something to be grateful for!
I actually have SO much to be grateful for. I am continuing to be amazed at the love and support of my friends. There have been some surprises....some who I was sure would be extremely supportive have been absent and/or silent, while others, who I never thought of as "close friends" have been among the first to jump up and say "how can I help?". I have a few regrets that I live with, but giving my heart to the people I care about is not one of them. Love, Claudia
November 30, 2006
I've finally had a week where the majority of my days were "unscheduled" and actually my time has been "my own". It's kind of a strange feeling after working so much for so long. Now, though, I have time to think...and that isn't always good. I MISS work...I miss the feeling of excitement mixed with fear that I got every time we lauched for a flight. I always said that if you're ever NOT a little afraid when you're going to take care of that super-sick/injured person...you are NUTS! I miss the feeling of knowing that a challenge, a puzzle, a life-or-death race lay ahead of me...and wondering how things would play out. Would I sail through...would I face unforseen challenges....could I anticipate the challenges....would I learn a new lesson that would benefit someone else??? I miss being TESTED. It's nuts. I know.
This week I've had the joy of watching Christopher anticipate Christmas. While the decorations were all up by Thanksgiving, his enthusiasm has only increased. The magical side of life is very real to him...while we've always told him that Santa was just "pretend"...and stressed the REAL meaning of Christmas...he is just a huge Santa fan (much to Phillip's shagrin)! Christopher is "practicing" for Christmas by putting some of his small toys in his stocking, and "wrapping" and unwrapping many of his other belongings. He ceremoniously puts them under the tree and begs for a "bowl" to put on top for decoration (OK so it's "bow" not "bowl"!). He is just FUN!
I've started working on a book for my kids. I found it at Hallmark and it's called "Did I Ever Tell You...Your Life's Lessons In Your Own Words". Inside there are just "story starters" like "Maintaining lasting friendships requires......" with lined pages to finish the "lesson". It is very interesting and thought-provoking. I hope that the kids (especially Catherine) can go to this book for the "wisdom" (or lack thereof) that "Mom" would have given them....after I'm gone.
I'm seriously considering enrolling in Phase I of the I.U. Ceftriaxone ALS study. It is a very demanding protocol, with rather invasive components (a Hickman Catheter for IV Ceftriaxone, and spinal taps to name a few things) but I just can't sit back and do nothing and watch myself loose all my ability to move, speak and ultimately breathe. It is a hard decision, because the study has it's risks, but I've always been a "calculated risk" taker...
I've seen a few of my friends from Hancock and Methodist in the past week and I want you to know that it is AWESOME to have company! I hope to see more of you over the coming weeks. While I tire out easily, I can still talk and I still love to laugh! So bring your funny-selves over! Love, Claudia
This week I've had the joy of watching Christopher anticipate Christmas. While the decorations were all up by Thanksgiving, his enthusiasm has only increased. The magical side of life is very real to him...while we've always told him that Santa was just "pretend"...and stressed the REAL meaning of Christmas...he is just a huge Santa fan (much to Phillip's shagrin)! Christopher is "practicing" for Christmas by putting some of his small toys in his stocking, and "wrapping" and unwrapping many of his other belongings. He ceremoniously puts them under the tree and begs for a "bowl" to put on top for decoration (OK so it's "bow" not "bowl"!). He is just FUN!
I've started working on a book for my kids. I found it at Hallmark and it's called "Did I Ever Tell You...Your Life's Lessons In Your Own Words". Inside there are just "story starters" like "Maintaining lasting friendships requires......" with lined pages to finish the "lesson". It is very interesting and thought-provoking. I hope that the kids (especially Catherine) can go to this book for the "wisdom" (or lack thereof) that "Mom" would have given them....after I'm gone.
I'm seriously considering enrolling in Phase I of the I.U. Ceftriaxone ALS study. It is a very demanding protocol, with rather invasive components (a Hickman Catheter for IV Ceftriaxone, and spinal taps to name a few things) but I just can't sit back and do nothing and watch myself loose all my ability to move, speak and ultimately breathe. It is a hard decision, because the study has it's risks, but I've always been a "calculated risk" taker...
I've seen a few of my friends from Hancock and Methodist in the past week and I want you to know that it is AWESOME to have company! I hope to see more of you over the coming weeks. While I tire out easily, I can still talk and I still love to laugh! So bring your funny-selves over! Love, Claudia
November 23, 2006 Thanksgiving Day
Roni's a Turkey!
I have so much to be thankful for! It was a beautiful day today....clear cool (but not cold) and sunny. While Catherine and Phillip are with their Dad in Baltimore this holiday, Christopher and Amy were here and we had a wonderful day.We knew a few days ago that my friends at Methodist had arranged to get Thanksgiving Dinner for us, so we knew to expect "company" around 11:00 this morning. Well, soon after 11:00, the phone rang and it was my friend, Roni Waitman (who works at Methodist). She said, "Go to your front door and look outside!" We all three walked to the front door, opened it and there stood Roni, wearing a "pilgrim turkey" apron -- complete with the "turkey's" stuffed legs danging down to Roni's feet -- and there she stood "gobbling" at the top of her lungs! :) It was awesome! What a smile it brought to all of our faces to see this "turkey" (and Roni, you ARE a turkey! ;-P) gobbling on the front lawn!
We had a wonderful, delicious, awesome, yummy dinner complete with turkey, stuffing, yam casserole, carrots, green beans, cranberry sauce, biscuits and PIE...served hot and with love! It was such a gift of love and I am so grateful to my friends at Methodist (I love you guys) who contributed to make this possible. And, Roni also brought all the "trimmings" including a boquet of fresh flowers in fall colors, a fall candle, fall paper plates, napkins and cups and a DVD for Christopher....Cars (Disney/Pixar). He was elated!
Although our "families" were far away today, we felt surrounded by the love and concern of the "family" of friends that God has blessed us with here. I do have MUCH to be thankful for!!!
I hope that your Thanksgiving was as enjoyable and blessed as ours was. My prayer is that we all have time today and in the coming days to reflect on the gifts that God has given us and be THANKFUL... thankful that we live in the most prosperous nation on the earth, thankful that our men and women in uniform are willin
November 22, 2006
WOO HOO! Yahoo fixed my email and I'm "connected" again at living_with_ALS@yahoo.com! Wow, I didn't realize 72 hours was so long! :)
So, please email me and say "hi" and let me know all about your Thanksgiving. Thanks to Aaron and Michelle Hoard, we've already got our CHRISTMAS LIGHTS UP! Christopher is beside himself with joy! Thanks Aaron and Michelle!
Have a blessed (and THANKFUL) day tomorrow! Love, Claudia
So, please email me and say "hi" and let me know all about your Thanksgiving. Thanks to Aaron and Michelle Hoard, we've already got our CHRISTMAS LIGHTS UP! Christopher is beside himself with joy! Thanks Aaron and Michelle!
Have a blessed (and THANKFUL) day tomorrow! Love, Claudia
November 20, 2006
Well, if you've tried to email me today and gotten a "failure notice", you're not alone. For some reason, Yahoo has deactivated my living_with_ALS@yahoo.com email account. Of course, there is no phone support for free Yahoo email accounts, so I'm left emailing tech support and waiting (and waiting and waiting). I have to say, it is probably more frustrating for me, since email is my sole source of communication!!! Hopefully I'll be back "online" with email SOON at living_with_ALS@yahoo.com!
My speech is still "viable" at times, and not so much at others. I am grateful anytime I speak and something intelligible comes out! It is hard to imagine that soon those times will be gone. Still, I'm grateful (sooooooo grateful) for my SLOW progression. I have muscle twitches in pretty much every part of my body now....from time to time anyway....not constantly. They don't hurt, so it is not a big deal, other than a reminder of the fact that my muscles are dying.
I'm still fighting with my BiPAP at night. The problem isn't the pressure of the air....that is fine. The problem is that I can't seem to find a mask set-up that works well for me. The "nasal pillows" set-up, which is the most comfortable everywhere else, rubs my nostrils raw in one night. The nasal mask is either too small (and pushes up against my nostrils causing me to awaken because I can't breathe at all....that's not fun!) or too big (either has an air leak or is so tight that it feels like it is going to pop my eyes out). And then there is "hose-head hair". Gotta love THAT! And to think we thought "helmet hair" was bad (Heather!)....well, with a couple of these mask-strap set-ups I have the helmet-hair beat on it's WORST DAY!
And just in case you don't have a visual yet, I just want you to know that the masks either make me look like some mutant space-alien from Star Trek, like someone who is snorkeling, or like I'm wearing a gas mask. Too SEXY! I guess this is where it is a blessing to be SINGLE! ;-)
I am totally enjoying being home with Christopher. He is such fun (most of the time, anyway)! He is doing great in his school work. He hates fine motor skills (writing, cutting, etc.) but does better when we combine the skill with his interests. Today we did dot-to-dot drawings of helicopters and his beloved imaginary friend (and "beautiful" flight nurse), Kathy.
Today we also worked on a few pages of a memory book of our Disney trip. He enjoyed that. We managed to get 4 pages done before he had had enough of that and was off on another tangent.
Phillip went with Dan (his father), Kimberly (his step-mother), Catherine (my oldest child), Monique (Phillip's step-sister) and Daniel (Phillip's step-brother) to Chicago this past weekend. By all accounts he had a BLAST. They went to the King Tut exhibit. Phillip has always had an interest in ancient history and this had to be a huge "spark" to further his interest.
Phillip is working in the Anderson Public Library as part of his job-training through the schools --- and LOVES it! He is getting great feedback on his work. One comment I found humorous was about how "fast" he is! Yep. That's Phillip. He has always been on the move! I miss him a lot, but I am so glad that he is happy and doing well with his Dad and step-family.
Catherine is going to graduate from COLLEGE in May! I AM old! She will graduate at 21 years old with a bachelors in English. She says she wants to go to grad school....and does NOT want to teach....(I keep hearing the song: "What Do You Do With a BA in English?")
Well, hopefully my email will be back up soon. Please don't give up on emailing. I need to hear from you!!!
Lots of love, Claudia
My speech is still "viable" at times, and not so much at others. I am grateful anytime I speak and something intelligible comes out! It is hard to imagine that soon those times will be gone. Still, I'm grateful (sooooooo grateful) for my SLOW progression. I have muscle twitches in pretty much every part of my body now....from time to time anyway....not constantly. They don't hurt, so it is not a big deal, other than a reminder of the fact that my muscles are dying.
I'm still fighting with my BiPAP at night. The problem isn't the pressure of the air....that is fine. The problem is that I can't seem to find a mask set-up that works well for me. The "nasal pillows" set-up, which is the most comfortable everywhere else, rubs my nostrils raw in one night. The nasal mask is either too small (and pushes up against my nostrils causing me to awaken because I can't breathe at all....that's not fun!) or too big (either has an air leak or is so tight that it feels like it is going to pop my eyes out). And then there is "hose-head hair". Gotta love THAT! And to think we thought "helmet hair" was bad (Heather!)....well, with a couple of these mask-strap set-ups I have the helmet-hair beat on it's WORST DAY!
And just in case you don't have a visual yet, I just want you to know that the masks either make me look like some mutant space-alien from Star Trek, like someone who is snorkeling, or like I'm wearing a gas mask. Too SEXY! I guess this is where it is a blessing to be SINGLE! ;-)
I am totally enjoying being home with Christopher. He is such fun (most of the time, anyway)! He is doing great in his school work. He hates fine motor skills (writing, cutting, etc.) but does better when we combine the skill with his interests. Today we did dot-to-dot drawings of helicopters and his beloved imaginary friend (and "beautiful" flight nurse), Kathy.
Today we also worked on a few pages of a memory book of our Disney trip. He enjoyed that. We managed to get 4 pages done before he had had enough of that and was off on another tangent.
Phillip went with Dan (his father), Kimberly (his step-mother), Catherine (my oldest child), Monique (Phillip's step-sister) and Daniel (Phillip's step-brother) to Chicago this past weekend. By all accounts he had a BLAST. They went to the King Tut exhibit. Phillip has always had an interest in ancient history and this had to be a huge "spark" to further his interest.
Phillip is working in the Anderson Public Library as part of his job-training through the schools --- and LOVES it! He is getting great feedback on his work. One comment I found humorous was about how "fast" he is! Yep. That's Phillip. He has always been on the move! I miss him a lot, but I am so glad that he is happy and doing well with his Dad and step-family.
Catherine is going to graduate from COLLEGE in May! I AM old! She will graduate at 21 years old with a bachelors in English. She says she wants to go to grad school....and does NOT want to teach....(I keep hearing the song: "What Do You Do With a BA in English?")
Well, hopefully my email will be back up soon. Please don't give up on emailing. I need to hear from you!!!
Lots of love, Claudia
November 9, 2006
Today is actually the first day that I have not HAD to go somewhere or do something since I flew my last flight shift on October 17th. My room is a wreck from basically just dumping stuff in it and running to the next task. Once I finish this update, straightening up is my next job! Sometimes my mind feels as cluttered as my desk. There are so many uncertainties ahead...sometimes it is positively overwhelming! I'm trying to take things one day at a time but sometimes that is not so easy!
This week I finished the application process for Social Security (SSI and SSDI) for myself (I still have to finish Christopher's application next week) and the application for Medicaid for us. I never cease to be amazed at how cumbersome the "system" is and how slowly the "machine" moves. I have heard that in some states there are provisions for "emergencies" that expedite application approval...and in some states benefits really do start quickly. Not so much in Indiana....here my "expeditied" claim MIGHT be approved WITHIN 90 DAYS....or it might take as long as 120 days. The real frustration for me is knowing that the system is back-logged, at least in part, because of all the people who are geting government services who DON'T NEED THEM...like the lady who left the Medicaid office when I was there and got into a late-model LEXUS!
I visited a website last night about a young lady who has ALS. She is only 28 years old. On that site is a link to an interview with her (her name is Kimberly) and I encourage you to click here to see the video (please be patient while it loads and then plays the obligatory commercial!). This young lady is inspiring! She has a smile on her face and refuses to give up....
This disease is hateful, ugly and unforgiving...but I am seeing a pattern among the persons diagnosed with ALS. They are TOUGH and optimistic...and they are intelligent....ALS is teaching me things every day, about my own inner strength, about what makes a person a human, what priorities in life SHOULD be! This is going to be an incredible journey. I know that there will be tears and anger and fear, but I also am beginning to see that there will times when I connect with others in a way that never would have been possible before.
The Share the Care group met for the first time on Tuesday night and I was humbled and awed by the love and compassion in that room. I am so blessed to have such wonderful, loving people who are willing to walk this road with me. Relationships have always meant more to me than things, and I am seeing now that, in spite of the challenges I face, I am RICH. I am learning how much God loves me and how much He wants to meet our needs when we depend on Him. One thing I hope is, that through this journey, people will see God's compassion and love demonstrated through me and those who choose to walk with me. There is more to this life than what meets the eye...more than the material world...more than our physical state...
This week I finished the application process for Social Security (SSI and SSDI) for myself (I still have to finish Christopher's application next week) and the application for Medicaid for us. I never cease to be amazed at how cumbersome the "system" is and how slowly the "machine" moves. I have heard that in some states there are provisions for "emergencies" that expedite application approval...and in some states benefits really do start quickly. Not so much in Indiana....here my "expeditied" claim MIGHT be approved WITHIN 90 DAYS....or it might take as long as 120 days. The real frustration for me is knowing that the system is back-logged, at least in part, because of all the people who are geting government services who DON'T NEED THEM...like the lady who left the Medicaid office when I was there and got into a late-model LEXUS!
I visited a website last night about a young lady who has ALS. She is only 28 years old. On that site is a link to an interview with her (her name is Kimberly) and I encourage you to click here to see the video (please be patient while it loads and then plays the obligatory commercial!). This young lady is inspiring! She has a smile on her face and refuses to give up....
This disease is hateful, ugly and unforgiving...but I am seeing a pattern among the persons diagnosed with ALS. They are TOUGH and optimistic...and they are intelligent....ALS is teaching me things every day, about my own inner strength, about what makes a person a human, what priorities in life SHOULD be! This is going to be an incredible journey. I know that there will be tears and anger and fear, but I also am beginning to see that there will times when I connect with others in a way that never would have been possible before.
The Share the Care group met for the first time on Tuesday night and I was humbled and awed by the love and compassion in that room. I am so blessed to have such wonderful, loving people who are willing to walk this road with me. Relationships have always meant more to me than things, and I am seeing now that, in spite of the challenges I face, I am RICH. I am learning how much God loves me and how much He wants to meet our needs when we depend on Him. One thing I hope is, that through this journey, people will see God's compassion and love demonstrated through me and those who choose to walk with me. There is more to this life than what meets the eye...more than the material world...more than our physical state...
November 1, 2006
Well, so far I can't see that being "retired" is any less busy than working my 1.5 jobs! I have spent more time this week doing paperwork than you can believe! My application online for SSDI/SSI only took a few hours, but Christopher's (with so many doctors, tests and procedures) is going to be a real novel! Of course, then there is the 1.5 hours I spent on the PHONE with the Social Security Administration....
Now, when I say "on the PHONE" I really mean using Sprint Relay or TTY. Mostly, I use Sprint Relay, which is a great service. I TYPE what I want to say and an operator "says" it for me and then types in (for me to read) the response of the person I am "talking" to. I knew that my typing skills would come in handy someday!
Of course, I won't always have use of my fingers to type, that's why when I go for my evaluation for an Augmentative Communication Device, I will be likely getting a device that has speech output AND the ability for me to "type" using the movements of my eyes instead of my fingers. SO, there will be NO shutting ME up (wink, wink)!
Today my muscles feel like the blood in them is lead instead. So heavy. Every movement is hard and I am SO tired. I'm reading Morrie: In His Own Words by Morrie Schwartz, the man of Tuesdays With Morrie fame. Morrie had ALS. In In His Own Words, Morrie says, "Expect that it's going to be harder and take longer to do things. Be prepared to do things in ways that are very different from the ways you did them before." I have only begun to live that experience. I am fortunate that the changes I am experiencing are gradual, and so I have time to learn to adjust to them. My co-workers, critically injured in the helicopter crash last February weren't so lucky. They went from being the "rescuers" to needing rescue....from being able-bodied to having to fight through some horrific injuries....all in an INSTANT. They have been an inspiration to me. I have watched them fight back and make the very best of the circumstances dealt them, and I plan to do the same.
Now, when I say "on the PHONE" I really mean using Sprint Relay or TTY. Mostly, I use Sprint Relay, which is a great service. I TYPE what I want to say and an operator "says" it for me and then types in (for me to read) the response of the person I am "talking" to. I knew that my typing skills would come in handy someday!
Of course, I won't always have use of my fingers to type, that's why when I go for my evaluation for an Augmentative Communication Device, I will be likely getting a device that has speech output AND the ability for me to "type" using the movements of my eyes instead of my fingers. SO, there will be NO shutting ME up (wink, wink)!
Today my muscles feel like the blood in them is lead instead. So heavy. Every movement is hard and I am SO tired. I'm reading Morrie: In His Own Words by Morrie Schwartz, the man of Tuesdays With Morrie fame. Morrie had ALS. In In His Own Words, Morrie says, "Expect that it's going to be harder and take longer to do things. Be prepared to do things in ways that are very different from the ways you did them before." I have only begun to live that experience. I am fortunate that the changes I am experiencing are gradual, and so I have time to learn to adjust to them. My co-workers, critically injured in the helicopter crash last February weren't so lucky. They went from being the "rescuers" to needing rescue....from being able-bodied to having to fight through some horrific injuries....all in an INSTANT. They have been an inspiration to me. I have watched them fight back and make the very best of the circumstances dealt them, and I plan to do the same.
October 27, 2006
It has been a busy week!
First, a note about the website. The "Guestbook" and "Mailbag" features have been removed. I appreciate all the warm, caring notes of support! If you will send your notes to Sharyll (sharyllem@claudiasfamily.com) she will see that I get them. I am compiling a scrapbook of memories and some of the emails and comments I've received will be included. Your love and support mean so much to me!
Second, about our DISNEY trip! Christopher is still glowing over TOUCHING Mickey Mouse! It was truly a dream-come-true trip for him. We didn't go on too many attractions...Christopher mostly wanted to see all the cool things around and to MEET THE CHARACTERS! As you can see in the pictures we got to meet quite a few and he had a great time! The best part of the trip by far, was seeing the joy and delight in Christopher's face! Yes, there is "magic" to be found at Disney! We saw a huge improvement in Christopher's language while we were there.
I rented a scooter for myself (Christopher was in his wheelchair) while we were in the parks and I am SO glad that I did. The scooter allowed me to enjoy the time to the fullest extent of my ability. Without it, I would not have been able to see and do all that I did. Just being in the heat (110+ degree heat index) was draining enough.
Christopher's favorite thing besides the characters was "Its a Small World". We actually went through that attraction twice. He was enchanted by the dolls and music.
We also rode Aladdin's Magic Carpet, Tomorrowland Transit Authority, Peter Pan's Flight and the Walt Disney World Railroad. We went through the Haunted Mansion with disasterous results (Christopher was terrified and it took 3 hours of riding the monorail to bring him 'down off the ledge').
We went through World Showcase at EPCOT and Christopher loved the Japanese Drummers! We saw a fife and drum corp at the American Pavilion and Christopher loved it and even helped when they said the Pledge of Allegiance. We were grateful for the jumping fountains in EPCOT because it was SO hot! Christopher ran through them fully clothed and was able to cool off! We saw an awesome Fire Safety exhibit in Innoventions East. Liberty Mutual sponsors the exhibit and it was awesome! They have a full-size firetruck complete with equipment, a fire safety house (where they use a red spotlight to be a "fire" in different parts of the house and teach the kids how to get out alternate exits). We compteted in an interactive house where you use special "flashlights" to find fire hazards and acrue points for all that you find. Of course, our team won! ;0
We took a chance (risking serious overstimulation at the end of a rough day -- the same day we crashed and burned at the Haunted Mansion) and were able to get a last minute seating at Chef Mickey's Character Dinner in the Contemporary Resort. It was AWESOME! Christopher LOVED it. That said, he didn't eat ONE BITE of food, but he had FUN.Eating was a challenge for Christopher at Disney. Between his very limited repertoire of food and all the excitement and the heat....well, lets just say I am SO glad that we took Pediasure with us! We fed the Pediasure to him out of a 20cc syringe and he took it like "medicine" but at least it kept him from his "hypo" meltdowns!
We are so blessed to have been able to go to Disney. While not everything was streamlined, pleasant and easy on the trip, the joy Christopher experienced was worth it ALL! He is still OVER THE TOP with excitement (Mickey, Mickey, Mickey, Mickey, Mickey!!!!).
First, a note about the website. The "Guestbook" and "Mailbag" features have been removed. I appreciate all the warm, caring notes of support! If you will send your notes to Sharyll (sharyllem@claudiasfamily.com) she will see that I get them. I am compiling a scrapbook of memories and some of the emails and comments I've received will be included. Your love and support mean so much to me!
Second, about our DISNEY trip! Christopher is still glowing over TOUCHING Mickey Mouse! It was truly a dream-come-true trip for him. We didn't go on too many attractions...Christopher mostly wanted to see all the cool things around and to MEET THE CHARACTERS! As you can see in the pictures we got to meet quite a few and he had a great time! The best part of the trip by far, was seeing the joy and delight in Christopher's face! Yes, there is "magic" to be found at Disney! We saw a huge improvement in Christopher's language while we were there.
I rented a scooter for myself (Christopher was in his wheelchair) while we were in the parks and I am SO glad that I did. The scooter allowed me to enjoy the time to the fullest extent of my ability. Without it, I would not have been able to see and do all that I did. Just being in the heat (110+ degree heat index) was draining enough.
Christopher's favorite thing besides the characters was "Its a Small World". We actually went through that attraction twice. He was enchanted by the dolls and music.
We also rode Aladdin's Magic Carpet, Tomorrowland Transit Authority, Peter Pan's Flight and the Walt Disney World Railroad. We went through the Haunted Mansion with disasterous results (Christopher was terrified and it took 3 hours of riding the monorail to bring him 'down off the ledge').
We went through World Showcase at EPCOT and Christopher loved the Japanese Drummers! We saw a fife and drum corp at the American Pavilion and Christopher loved it and even helped when they said the Pledge of Allegiance. We were grateful for the jumping fountains in EPCOT because it was SO hot! Christopher ran through them fully clothed and was able to cool off! We saw an awesome Fire Safety exhibit in Innoventions East. Liberty Mutual sponsors the exhibit and it was awesome! They have a full-size firetruck complete with equipment, a fire safety house (where they use a red spotlight to be a "fire" in different parts of the house and teach the kids how to get out alternate exits). We compteted in an interactive house where you use special "flashlights" to find fire hazards and acrue points for all that you find. Of course, our team won! ;0
We took a chance (risking serious overstimulation at the end of a rough day -- the same day we crashed and burned at the Haunted Mansion) and were able to get a last minute seating at Chef Mickey's Character Dinner in the Contemporary Resort. It was AWESOME! Christopher LOVED it. That said, he didn't eat ONE BITE of food, but he had FUN.Eating was a challenge for Christopher at Disney. Between his very limited repertoire of food and all the excitement and the heat....well, lets just say I am SO glad that we took Pediasure with us! We fed the Pediasure to him out of a 20cc syringe and he took it like "medicine" but at least it kept him from his "hypo" meltdowns!
We are so blessed to have been able to go to Disney. While not everything was streamlined, pleasant and easy on the trip, the joy Christopher experienced was worth it ALL! He is still OVER THE TOP with excitement (Mickey, Mickey, Mickey, Mickey, Mickey!!!!).
October 26, 2006
I have had my BiPAP for a little over a week now. It is taking some getting used to. I keep waking up at night because I have the hose wrapped around my neck! OOPS! The mask I have is a "Mirage Swift" nasal pillow and it is small and doesn't look like a BVM but it is making my nose SO sore! I hear that gets better after a while. I defnintely can't use the BiPAP without humidification, and that presents its own set of challenges. I like my room cold when I sleep, but that causes the moisture in the tubing to condense inside the tubing and I wake up with water running into my nose! Not fun! So I've "insulated" the tubing to prevent the cold air from hitting the tubing and causing the moisture to condense -- Voila! Problem solved!
Just the first of many adjustments I have ahead.
I have noticed that I am getting cramps in my jaw now. Crying is definitely OUT...cramps BIG TIME when I cry! OUCH. Something tells me I'll have to live with the cramps once in a while, because I don't think I'm done crying yet!
All things said, I am doing pretty well. I'm working on applying for Social Security Disabilty (a simple 786-step process!). The application sates that "It takes about 120 days to process applicaions for disability benefits" (and you can't file until you are no longer working) and "We may take more or less time on your claim". I can only hope that they take LESS time, since I am now without a job!
Stay tuned for updates........
Just the first of many adjustments I have ahead.
I have noticed that I am getting cramps in my jaw now. Crying is definitely OUT...cramps BIG TIME when I cry! OUCH. Something tells me I'll have to live with the cramps once in a while, because I don't think I'm done crying yet!
All things said, I am doing pretty well. I'm working on applying for Social Security Disabilty (a simple 786-step process!). The application sates that "It takes about 120 days to process applicaions for disability benefits" (and you can't file until you are no longer working) and "We may take more or less time on your claim". I can only hope that they take LESS time, since I am now without a job!
Stay tuned for updates........
October 15, 2006
My last shift at PHI is on Tuesday...it is coming up fast. I will miss work so much...(well, I won't miss the paperwork!!! ;)
Yesterday, I decided to take Amy and Christopher out with me to the store. Christopher hadn't been away from the house in several days and I thought he would enjoy a change of scenery. He was a little antsy and irritable, so Amy and I decided that they would stay in the car while I ran in to the grocery store (I only needed a few things). On the way home, Christopher's irritability mushroomed into a full-blown meltdown. Now, for those of you who don't know, I no longer have my Honda CRV...I now drive a (no-loan-attached) 1992 Geo Prizm. Christopher sits in the center of the Geo's back seat in his "special needs car seat" (it takes up almost all of the back seat). On a good day, Christopher is cramped in the car and his feet rest on the console between the two front seats. NOW picture him in full melt-down mode....kicking, flailing his arms, picking up things around him (his sippy cup, the hard plastic lid to a "catch all box" that sits next to his seat, the contents of his diaper bag) and THROWING THEM. And the windows are OPEN. Amy has her arm on my seat-back and is trying to keep Christopher from kicking me in the head (and as a consequence her arm is getting beat up). I pull over as soon as I can and stop the car. Just doing that seemed to help calm Christopher down...and I said to him, calmly, "When you are happy, we'll go [home]". He looked at me, serious as can be and shouted "I AM NOT HAPPY!" (DUH -- like the kicking, screaming and throwing things didn't clue me in). I actually had to hide my face because I was laughing! We sat there a couple of minutes (in an exclusive neighborhood...the residents there must have been concerned to see us stopped...we clearly didn't live there!), Christopher composed himself and we resumed our trip home. (Big sigh of relief!). Probably 1/4 mile down the road (146th) toward home suddenly a car turned left in front of me (he was focused on getting home and I'm sure he never saw us) and I narrowly missed T-boning him by slamming on my brakes. Well, we were safe (thank the Lord, since the car has no airbags...but it DOES have those crazy, loose, built-into-the-door shoulder belts), but the sudden deceleration scared Christopher (Amy and me too) and the subsequent adrenalin rush RE-STARTED the meltdown! It was all I could do not to try to track that driver down and pummel him to death! Another simple task, made "interesting" by autism! GRRRRR.
This morning we found out what the basis of Christopher's irritability probably was...his asthma is acting up. Irritability is the first symptom...this morning he woke with an O2 sat of 92%!
Life is nothing if it isn't interesting! ;0
Yesterday, I decided to take Amy and Christopher out with me to the store. Christopher hadn't been away from the house in several days and I thought he would enjoy a change of scenery. He was a little antsy and irritable, so Amy and I decided that they would stay in the car while I ran in to the grocery store (I only needed a few things). On the way home, Christopher's irritability mushroomed into a full-blown meltdown. Now, for those of you who don't know, I no longer have my Honda CRV...I now drive a (no-loan-attached) 1992 Geo Prizm. Christopher sits in the center of the Geo's back seat in his "special needs car seat" (it takes up almost all of the back seat). On a good day, Christopher is cramped in the car and his feet rest on the console between the two front seats. NOW picture him in full melt-down mode....kicking, flailing his arms, picking up things around him (his sippy cup, the hard plastic lid to a "catch all box" that sits next to his seat, the contents of his diaper bag) and THROWING THEM. And the windows are OPEN. Amy has her arm on my seat-back and is trying to keep Christopher from kicking me in the head (and as a consequence her arm is getting beat up). I pull over as soon as I can and stop the car. Just doing that seemed to help calm Christopher down...and I said to him, calmly, "When you are happy, we'll go [home]". He looked at me, serious as can be and shouted "I AM NOT HAPPY!" (DUH -- like the kicking, screaming and throwing things didn't clue me in). I actually had to hide my face because I was laughing! We sat there a couple of minutes (in an exclusive neighborhood...the residents there must have been concerned to see us stopped...we clearly didn't live there!), Christopher composed himself and we resumed our trip home. (Big sigh of relief!). Probably 1/4 mile down the road (146th) toward home suddenly a car turned left in front of me (he was focused on getting home and I'm sure he never saw us) and I narrowly missed T-boning him by slamming on my brakes. Well, we were safe (thank the Lord, since the car has no airbags...but it DOES have those crazy, loose, built-into-the-door shoulder belts), but the sudden deceleration scared Christopher (Amy and me too) and the subsequent adrenalin rush RE-STARTED the meltdown! It was all I could do not to try to track that driver down and pummel him to death! Another simple task, made "interesting" by autism! GRRRRR.
This morning we found out what the basis of Christopher's irritability probably was...his asthma is acting up. Irritability is the first symptom...this morning he woke with an O2 sat of 92%!
Life is nothing if it isn't interesting! ;0
October 12, 2006
We have gone from summer (hot yesterday) to winter (high in the upper 40's today) in 24 hours. As quickly as the weather changes, so can our lives. In EMS you learn that life can turn on a dime...one minute your whole life is before you....the next your life is shattered amidst crumpled metal or by a clot cutting off the supply of blood to your heart. There are no guarantees. I am fortunate. I have had the opportunity to think about what I want to do and say in the last few years of my life, and I have taken a big step towards that end:
This morning I turned in my resignation from PHI Dove Flight. I am leaving the career I love. This is my chance to demonstrate that I am more than "what I do"....we all should be more than what we do, but it is so easy to go through life defining yourself by your job, or other external influences. This is my chance to eek out the joy in life's simple things that I have missed by working so much. Maybe I'll find time to scrapbook some of my 1000's of photographs. At the very least, maybe I will LOOK at every one of them again. I have some wonderful memories, and the happiest of those memories are times I spent with my children...not times I was working. Oh, sure, I've had fun at work and I've cared deeply for some of the people I work with, but when I look back and wish for "time slowed down" it isn't for more time at work, but more time hugging my kids, playing with them, being a mom.
If I could slow down time it would be to enjoy -- no fully cherish -- the people in my life. From now on I resolve to do my best to do just that. I'm now out of excuses!
I will miss my career more than I can say, as I will miss many of the wonderful, talented and intelligent people I have worked with these past two-and-a-half years. I have learned so much, and still had so much to learn. Now I get to figure out new ways to keep my brain sharp, and my mind clear. Drip calculations for fun????
Today truly is the first day of the rest of my life.....how I spend it is up to me.
This morning I turned in my resignation from PHI Dove Flight. I am leaving the career I love. This is my chance to demonstrate that I am more than "what I do"....we all should be more than what we do, but it is so easy to go through life defining yourself by your job, or other external influences. This is my chance to eek out the joy in life's simple things that I have missed by working so much. Maybe I'll find time to scrapbook some of my 1000's of photographs. At the very least, maybe I will LOOK at every one of them again. I have some wonderful memories, and the happiest of those memories are times I spent with my children...not times I was working. Oh, sure, I've had fun at work and I've cared deeply for some of the people I work with, but when I look back and wish for "time slowed down" it isn't for more time at work, but more time hugging my kids, playing with them, being a mom.
If I could slow down time it would be to enjoy -- no fully cherish -- the people in my life. From now on I resolve to do my best to do just that. I'm now out of excuses!
I will miss my career more than I can say, as I will miss many of the wonderful, talented and intelligent people I have worked with these past two-and-a-half years. I have learned so much, and still had so much to learn. Now I get to figure out new ways to keep my brain sharp, and my mind clear. Drip calculations for fun????
Today truly is the first day of the rest of my life.....how I spend it is up to me.
October 09, 2006
What a wonderful time we had in our 24 hours in Brown County! On Thursday it was overcast, drizzly and cool, so we didn’t spend much time outside. Instead, after we checked in at the Abe Martin Lodge, we explored the rustic sights inside! Abe Martin Lodge features a huge fireplace in the main room, complete with an open atrium to the lobby below. The dining room overlooks the deck and woods surrounding the lodge and Thursday night is BBQ night, complete with “live entertainment” (an old guy with a big beard singing 60’s songs and playing the guitar…all a little too loudly!). Christopher was really freaked out by the entertainment (I must admit, I found the old guy to be a cross between pathetic and sinister….he would have looked more at home on a street corner with his guitar case open for ‘tips’) so we ate in a back room alone….or should I say AMY AND I ate. Christopher did not eat a BITE of his “buffet” meal. It took him nearly 3 hours to “come in off the ledge” when we got back to the room. Thank goodness for his portable DVD player and PEDIASURE! On Friday we awoke at 5:45 and were in the dining room for breakfast at 7:05 (they started serving at 7:00). I originally had planned on breakfast in the room (cold cereal and muffins) but we had to kill time until it was warm enough to go outside (it was pretty cool and we had only brought very light jackets….not good planning on our part). “Besides,” I thought, “this is one meal that I KNOW Christopher will EAT!” since his love for scrambled eggs and sausage patties is legendary! Well, that’s what I get for thinking! Evidently the aura of the old ballad-singer from the night before still lingered in the dining room….Christopher was like a cat on a hot tin roof and didn’t eat a bite! THIS TIME, though, we asked for a box and took his food back to the room, and once he was happily ensconced in front of his DVD player, he relaxed enough to eat! The woods in Brown County State Park are beautiful any time of year, but more so in the fall. The leaves are all shades of reds, golds, browns and yellows and they form great drifts on the ground, perfect for launching oneself into! Christopher loved all of it. He is a true “outdoor kid” and I’ve never once (ever) heard him ask to go INSIDE. We played on the playground near the lodge and he enjoyed swinging and going down the slide. WE climbed into the North Lookout Tower and enjoyed a beautiful view of the fall foliage all around us. We drove into Bloomington and had lunch in a secluded park on the edge of Monroe Lake. It was all we could do to keep Christopher out of the (chilly) water! We explored the giant tree that had fallen, exposing what was left of its withered roots. We threw rocks into the lake, and just enjoyed the breeze and sun! It was delightful! We had a wonderful time and we got some pictures too (check the photo gallery). There is a lot of life to be lived out there, and I plan on living it to my fullest capacity for as long as possible! I heard someone say “I’m not dying of ALS, I am LIVING WITH ALS”. I’m not done living yet! Sometimes I think I’m just getting started….
October 04, 2006
I had my first visit yesterday at the ALS Multi-disciplinary Clinic at IU. It was a LONG appointment, starting at 8 AM and lasting until 1:30 PM. My friend, Sharyll, went with me and we decided that, next time, we'll either pack a picnic to take along or bring refreshments for all the staff we get to "visit" with! The respiratory therapist (RT) was out sick, so the clinic nurse-coordinator did my forced vital capacity (FVC). It was 120% which is great! That said, I started out with an FVC of 132% last October and it was 121% just last month, so I am seeing a decline. Still, things are looking good with my diaphragm strength. Dr. Pascuzzi (the ALS clinic director and my neurologist) saw me next. He felt like the exam was pretty good, as well. We discussed the symptoms that I am seeing...mostly increased fatigue, slight weakness on my left side with very slight left foot-drop. We discussed my sleep study (done last month at IU) and my diagnosis of Obstructive Sleep Apnea. He was equivocal about whether I would need a CPAP or BiPAP to treat the apnea. I hope to hear from someone about the decision later this week. I am eager to get some sort of "PAP" to help me get better rest. Dr. P's "take" on things was "ALS causes fatigue, sleep apnea causes fatigue. BiPAP (or CPAP) should help with both" We discussed the current clinical trials that are going on at IU. Two studies are finishing up (and are not enrolling new patients). They are studying minocycline (an antibiotic) and myotrophin. The new study starting is going to look at the effects of HIGH (2-4 GRAMS DAILY) dose ceftriaxone (Rocephin). This particular study sounds intense, requiring central venous access via a Hickman for the duration of the year, numerous clinic visits, several spinal taps and the twice-daily infusions of the ceftriaxone. Deciding whether or not to enroll in research studies is a difficult thing for me. I've never been faced with a fatal medical problem for which there were virtually no treatments...and ALS is such a disease. I can do the "cost-benefit" routine until I am blue in the face, but the bottom line is, with a "trial".....THERE IS NO CERTAINTY of ANY BENEFIT. It kind of makes the risks inherent in the trial that much more frightening. I met with the speech therapist(ST) and she feels that my speech is very weak with some laryngospasm and the obvious articulation difficulties (dysarthria). I shared with her that I basically do not use the phone anymore, but use an internet relay service to make business calls (I go to the web link, type in the number I want to call, an operator dials the number and explains the relay, and then the operator "talks for me" and types in [for me to read] what the person I have called is saying). The cool thing about the relay service (as opposed to using the basic TTY relay service and a TTY phone .. which I now have) is that you can add emoticons to your text to help the operator add emotion to what you are 'saying'. The ST (a super nice lady named Dawn….I always “hit it off” with STs!) feels that a voice amplifier would be of great benefit for me. She has recommended a device called “CHATTERVOX”. Basically it is a boom microphone/headset that attaches to a speaker that I would wear around my waist like a “fanny pack”. I’m not sure I’m emotionally ready to use something like that full-time, but I do know that my speech has begun to significantly affect my life….any speaking that isn’t face-to-face in a quiet environment is very difficult and exhausting.
The nutritionist was also there and we discussed my swallowing (along with Dawn, the ST). I am having choking (coughing) almost every time I eat or drink. I can no longer chew gum (just can’t keep the gum and my saliva all in my mouth!). I am definitely modifying my diet to accommodate my swallowing. Smaller bites and moist (no dry crackers!) food is a “must”. Drinking from bottles or cans where I have to extend my head back causes the liquid to try to “go down the wrong pipe”…They recommended a “Nosey Cup” (a cup with the side cut out so that you don’t have to tilt your head back to empty the cup). I have some trouble swallowing pills and I joked that gummy bears go down great, so all meds should come coated in gummy bears (a trick I am using to get pills into Christopher with GREAT success!). And here is every woman’s dream: hearing from the nutritionist/dietician that I SHOULD NOT attempt to loose ANY weight AT ALL! She said, ALS is a disease of muscle-wasting and the first thing that you loose when you loose weight is muscle…so NO DIETING! LOL. If only I hadn’t given away ALL of my “fat clothes”!!!! I met with a physical medicine physician, the occupational therapist (OT), the physical therapist (PT) and the durable medical equipment (DME) specialist. The great news there is I don’t need much from any of them right now. The general consensus was that I should avoid wearing “flip flops” or sandals that don’t have a heel just for the fall hazard, but I don’t need any orthotics/braces for the mild foot-drop/left leg weakness! I met with the social worker (Abbie) and we talked about all the REALLY hard issues that seem to come with this: work, finances, SSI/SSDI, end of life decisions, hospice…. I have resigned from my RN job at Hancock. I could no longer continue to work that many hours (combined with PHI it was sometimes 50-60 hours a week). It is only a matter of time before I cannot fly anymore. THAT makes me sad. I LOVE my job and I LOVE flying. It is my dream…. But I want to be able to spend “quality” time with Christopher before I am too incapacitated to do so and I want to be SAFE in the performance of my job, and I realize that the time is fast approaching when I will have to make that decision. The implications are financially enormous. I am checking into/applying for all the government programs (SSA, Medicaid, Section 8 housing) that I can….while I am still working there is little available. Once I quit work there are more services available to me and Christopher, but obviously, the paychecks will STOP and with lag-time in applying for services, I am apprehensive about what the interim will hold. ON THE BRIGHT SIDE: tomorrow we are driving down to Brown County, Nashville, Indiana. We will take in the fall sights at Brown County State park and even spend the night in a state park cabin at Abe Martin Lodge. We have talked about making a fall trip to Brown County for many years, and finally decided that the time had COME. This time next year I may not be able to hike the trails! So NOW is the time!!! I’ll post pictures soon! Love, Claudia
The nutritionist was also there and we discussed my swallowing (along with Dawn, the ST). I am having choking (coughing) almost every time I eat or drink. I can no longer chew gum (just can’t keep the gum and my saliva all in my mouth!). I am definitely modifying my diet to accommodate my swallowing. Smaller bites and moist (no dry crackers!) food is a “must”. Drinking from bottles or cans where I have to extend my head back causes the liquid to try to “go down the wrong pipe”…They recommended a “Nosey Cup” (a cup with the side cut out so that you don’t have to tilt your head back to empty the cup). I have some trouble swallowing pills and I joked that gummy bears go down great, so all meds should come coated in gummy bears (a trick I am using to get pills into Christopher with GREAT success!). And here is every woman’s dream: hearing from the nutritionist/dietician that I SHOULD NOT attempt to loose ANY weight AT ALL! She said, ALS is a disease of muscle-wasting and the first thing that you loose when you loose weight is muscle…so NO DIETING! LOL. If only I hadn’t given away ALL of my “fat clothes”!!!! I met with a physical medicine physician, the occupational therapist (OT), the physical therapist (PT) and the durable medical equipment (DME) specialist. The great news there is I don’t need much from any of them right now. The general consensus was that I should avoid wearing “flip flops” or sandals that don’t have a heel just for the fall hazard, but I don’t need any orthotics/braces for the mild foot-drop/left leg weakness! I met with the social worker (Abbie) and we talked about all the REALLY hard issues that seem to come with this: work, finances, SSI/SSDI, end of life decisions, hospice…. I have resigned from my RN job at Hancock. I could no longer continue to work that many hours (combined with PHI it was sometimes 50-60 hours a week). It is only a matter of time before I cannot fly anymore. THAT makes me sad. I LOVE my job and I LOVE flying. It is my dream…. But I want to be able to spend “quality” time with Christopher before I am too incapacitated to do so and I want to be SAFE in the performance of my job, and I realize that the time is fast approaching when I will have to make that decision. The implications are financially enormous. I am checking into/applying for all the government programs (SSA, Medicaid, Section 8 housing) that I can….while I am still working there is little available. Once I quit work there are more services available to me and Christopher, but obviously, the paychecks will STOP and with lag-time in applying for services, I am apprehensive about what the interim will hold. ON THE BRIGHT SIDE: tomorrow we are driving down to Brown County, Nashville, Indiana. We will take in the fall sights at Brown County State park and even spend the night in a state park cabin at Abe Martin Lodge. We have talked about making a fall trip to Brown County for many years, and finally decided that the time had COME. This time next year I may not be able to hike the trails! So NOW is the time!!! I’ll post pictures soon! Love, Claudia
May 22, 2006
What a beautiful day here in central Indiana....high near 70 with low humidity and a gentle breeze. Just like California, without the "sunshine tax"! Still getting ready to move. Yesterday Amy and Christopher and I spent the day at the "new house". I spent much of my time trying to descale faucets, etc., since the previous residents must not have understood (or cared) that the water softener needed to be refilled with SALT! It had obviously been empty for a LLLLOOOOOOONGGGG time. Upstairs, in the master bath, I had taken the faucet aerators off and put them in the (stopped up) sink to soak in Lime-Away. I was cleaning the shower and Christopher walked in to the bathroom and before I could blink he had stuck his hand into the acid in the sink! I immediately grabbed his arm and started flushing it under the faucet in the tub. I called for Amy, since it was all I could do to keep his hand under the water (autistic kids and 'need to do something' don't mix). I realized that we were going to have to put him in the tub full of water and let him SOAK the chemical off, rather than continue to risk dislocating his shoulder by holding his arm under the running water. The problem was, we didn't have a towel in the house - anywhere. So I jumped in the car (leaving Amy with Christopher now soaking in the garden tub) and ran the 2 blocks to WalMart to buy a bath towel. He was still in the tub when I got back and it appears to have been an effective decontamination because he has no residual pain or other signs of chemical burns! NEVER A DULL MOMENT! More running around today....I had a doctor appointment to get my non-ALS meds (inhaler for my asthma, etc.) refilled. I hadn't seen my doctor since a year ago and it turns out that my neurologist hasn't sent him any reports, so my primary care physician (PMD) had no idea that I have been diagnosed with "probable" ALS. He kinda looked shocked, then just went on as if nothing had happened (or as if I had just told him I had been diagnosed with dermatitis). All he had to say was "Good Luck". Kinda sad to think that, even knowing that I'm a single mom with 2 disabled kids at home, the best he could offer was "good luck". Anyhow, I am SO grateful for our friend Sharyll, who has been down here visiting several times to help us get ready for the move. It is an hour drive from her home to ours and she comes down and sleeps on a mattress on the living room floor, and then has just been a BIG help with getting stuff ready around the house. Well, speaking of getting stuff ready, I need to go get back to packing up the kitchen! Three more days (and one of them I work a 24-hour shift on the helicopter).....
May 15, 2006
It has been a super busy spring! I am moving in just over a week to a more desirable part of the Indianapolis suburbs, Fishers (Hamilton County). The house is bigger and will be much more comfortable for all of us. So far I am only having speech, swallowing and shortness of breath for symptoms of my ALS. That is good news since the new house is a two story with the master bedroom upstairs! I'm still flying full-time on the helicopter as a flight paramedic and working in the ER as an RN. There are times when I am concerned that my speech is so bad that it will have a negative effect on my employment, but so far, no one has raised any questions about it. My bosses at Dove Flight know about my diagnosis. I haven't told the folks at the hospital yet. How do you do that?? I still worry about what will happen when I can't work anymore. I'm just trying to trust God with the future; ultimately, we have no control anyway. I just get the full reality a little more than most folks!
March 18, 2006 at 01:00 AM EST
Hi! I decided to start this care page for my friends and loved ones to be able to check and see what is going on with my journey with "probable ALS". ALS (amyotrophic lateral sclerosis) A chronic, progressive disease marked by gradual degeneration of the nerve cells in the central nervous system that control voluntary muscle movement. The disorder causes muscle weakness and atrophy; symptoms commonly appear in middle to late adulthood, with death in two to five years. The cause is unknown, and there is no known cure. Also called Lou Gehrig's Disease, or Motor Neuron Disease. Literally, amyotrophic lateral sclerosis means without muscle nourishment, side (of spinal cord) hardening. My first symptom was intermittent slurred speech. This began in October 2004. I first saught medical treatment for this in February 2005 with Robert Alonso, MD at Methodist Hospital in Indy. He felt that my symptoms were in line with those commonly seen with Myasthenia gravis. I had titers for the knon causes of MG (AcH antibody, MuSK antibody), thyroid studies, heavy metal studies, an MRI, and EMG and an RNS. Everything was normal. He suggested I wait unitl February 2006 and repeat the MRI. Instead I sought out a second opinion from Robert Pascuzzi, MD at IU (since he is an expert in MG and ALS). On my first visit to Dr. Pascuzzi he said that I did not have Myasthenia Gravis (he is an expert on MG) but, rather, have Motor Neuron Disease, or more specifically Amyotrophic Lateral Sclerosis (ALS)/Lou Gehrig's Disease. I was in SHOCK as he went on to tell me that most people with ALS only live 2-5 years after diagnosis, with only 10% living 10 years or more. Since that time I've had more tests and seen Dr. Pascuzzi twice. He still is sticking by the "probable" ALS diagnosis. He prescribed the only medication used to treat ALS, Rilutek, but I have opted to wait to start taking it for fear that taking it will cement a still slightly uncertain diagnosis in my medical records. More to come....
Subscribe to:
Posts (Atom)