This is my profile badge from patientslikeme.com...
You can tell from the badge that my arms are the most affected by ALS, with the rest of my body...speech, swallowing, neck weakness, down my trunk, my breathing, and then right down my legs...all in a race for a close second. Click the badge to see a more detailed look at how I'm doing with ALS.
This is my ALS Functional Rating Scale(FRS) history since my diagnosis.
This scale is utilized for tracking disease progression.
It seems like just yesterday I was saying "OMG, they've got the Christmas stuff out already?"... Before too long, they'll just make the Christmas decorations etc. a permanent display in the stores...
I've had a pretty good day...up around 8:00, enjoyed touching-base with some very dear friends. Before I knew it, 12:30 had arrived, and my energy had departed...went down for a count, about an hour and a half. One thing's for sure with ALS, if you've lived the non-stop, always on-the-go, multi-tasking, caffeinated lifestyle, that will come to an end, possibly quite abruptly, with ALS... the fatigue is just one of those things that demands respect, whether we like it or not. Just finished Christmas dinner...it was very good, but just not the same when the turkey is ground up, but I'm still extremely greatful!
If you're a dog lover/owner, you really should check out Chai's story, about a dog struggling for it's life after playing with a seemingly innocent toy; turned into a nightmare for Chai and his owner alike. Then, if you've never heard of a cute little animal called a "sugar glider", you should check out Rocky's video on youtube. Very cute, and apparently almost as prevelant as a hamster or gerbil, but who knew? I'll even save you the work, here it is...
If you've received an email from me titled "Steve has sent you something", from the website "dotblu.com", I apologize, but I fell hook, line and sinker for this new social networking site when I received the same email from a friend. Before I knew it, it had emailed that same message to all my yahoo contacts, even though I checked the "No, do not send" box". However, I did find something pretty useful recenly; "Meebo" is a cross-platform instant messaging software. It allows access to your Yahoo, AIM, ICQ, even facebook and myspace instant messging accounts with a single password. If interested, just google "meebo". Anyone remember Trillian?
The 12 Days of Christmas
December 23rd 2008
On the 1st day of Christmas Lou Gehrig’s gave to me
an upgrade for Skeleton Key.
On the 2nd day of Christmas Lou Gehrig’s gave to me...
Two fingerless gloves,
and an upgrade for Skeleton Key.
On the 3rd day of Christmas Lou Gehrig’s gave to me…
Three extra chins,
two fingerless gloves,
and an upgrade for Skeleton Key.
On the 4th day of Christmas Lou Gehrig’s gave to me…
Four complex words,
three extra chins,
two fingerless gloves,
and an upgrade for Skeleton Key.
On the 5th day of Christmas Lou Gehrig’s gave to me…
Fiiiive Hoyer sliiiings…
four complex words,
three extra chins,
two fingerless gloves,
and an upgrade for Skeleton Key.
On the 6th day of Christmas Lou Gehrig’s gave to me…
Six bills for paying,
Fiiiive Hoyer sliiiings…
four complex words,
three extra chins,
two fingerless gloves,
and an upgrade for Skeleton Key.
On the 7th day of Christmas Lou Gehrig’s gave to me…
Seven bipaps beeping,
Six bills for paying,
Fiiiive Hoyer sliiiings…
four complex words,
three extra chins,
two fingerless gloves,
and an upgrade for Skeleton Key.
On the 8th day of Christmas Lou Gehrig’s gave to me…
Eight pills for popping,
Seven bipaps beeping,
Six bills for paying,
Fiiiive Hoyer sliiiings…
four complex words,
three extra chins,
two fingerless gloves,
and an upgrade for Skeleton Key.
On the 9th day of Christmas Lou Gehrig’s gave to me…
Nine nurses dancing,
Eight pills for popping,
Seven bipaps beeping,
Six bills for paying,
Fiiiive Hoyer sliiiings…
four complex words,
three extra chins,
two fingerless gloves,
and an upgrade for Skeleton Key.
On the 10th day of Christmas Lou Gehrig’s gave to me…
Ten muscles leaping,
Nine nurses dancing,
Eight pills for popping,
Seven bipaps beeping,
Six bills for paying,
Fiiiive Hoyer sliiiings…
four complex words,
three extra chins,
two fingerless gloves,
and an upgrade for Skeleton Key.
On the 11th day of Christmas,
Lou Gehrig’s gave to me
Eleven dictations typing,
Ten muscles leaping,
Nine nurses dancing,
Eight pills for popping,
Seven bipaps beeping,
Six bills for paying,
Fiiiive Hoyer sliiiings…
four complex words,
three extra chins,
two fingerless gloves,
and an upgrade for Skeleton Key.
On the12th day of Christmas Lou Gehrig’s gave to me...
Twelve friends a’coming,
Eleven dictations typing,
Ten muscles leaping,
Nine nurses dancing,
Eight pills for popping,
Seven bipaps beeping,
Six bills for paying…
Fiiiive Hoyer sliiiings…
four complex words,
three extra chins,
two fingerless gloves,
and an upgrade for Skeleton Key.
A new beginning
December 21st 2008
Two weeks since my last entry....and it feels like two months. With the Christmas season upon us, we're reminded to "Put Christ back into Christmas", that Jesus is the "reason for the season", and despite that, I still cringe when I receive emails with touching stories of selflessness and kindness that hit you with instructions to forward it to your friends, but if you don't, there's that verse, Matthew 10:33, - 33but whoever denies me before men, I also will deny before my Father who is in heaven. What an incredible guilt trip to put on someone for not forwarding an email! That reminds me of a joke that the monotonous Steven Wright used to tell, something like "I remember seeing on the tv, "Only you can prevent forest fires!"...so I found myself climbing out my bedroom window with a bucket every night!"
With the passing of our Lord and Savior's birthday celebration comes the ringing in of the new year, a season of "Auld Lang Syne", resolutions to be broken and a chance for a new beginning. But I've learned living with ALS that every single day not lived as a new beginning is a day wasted. Every day truly is a gift to be thankful for...another chance to do and say the right things, to stop those hurtful words to those closest to us and really change. What would you change if you were given a diagnosis of ALS, knowing you have, statistically 2-5 years to live, maybe more, maybe less? The point I want to make is I hope it won't take a diagnosis like ALS to make real change in yourself!
I've had an interesting day today, albeit routine...but nothing seems routine lately. Because my power chair quit working Friday morning, when I reclined, crushing the mouse driver box and severing a wire of some sort, I've had to come up with a means to stay mobile, so my world is now reduced to the bed, bath and my computer table. I sit on the seat of my rollator, a walker with wheels and hand brakes, and my caregivers push me from one end of my world to the other. Oh, and I put my feet on a rolling, cast-iron plant base. So goes my mornings, being rolled out, sleepily (grumpy), out to my true companion, my laptop, and my window to the world, the internet. One big hiccup this morning though...when I stood up in the shower for the "caboose-washing", my caregiver placed a hand on my back to steady me, but inadvertantly threw me off-balance, close call, scared us both, but nothing new. The real hiccup came though, when I began laughing uncontrollably while walking to the bed from the shower with my walker in front, caregiver on the caboose. Not many know much about ALS, and even fewer are aware of the pseudo-bulbar affect, also called "emotional incontinence", which is when your emotions, laughing or crying, are triggered much easier than the normal, healthy person, when ALS begins to effect the bulb of the brain. I don't know why it is that we tend to bend over as we laugh when standing, but for me it's like I go into auto-pilot, bending over, and this is made worse by my ever-weakening neck. So my caregiver was making me laugh really hard, because my dachshund, Diva, kept licking her ankles..."She keeps hittin the right spots", and by the time I got to the bed, I was all doubled-over, and I think she sort of over-corrected, and all I can remember from then is the both of us crashing into the lamp, the nightstand, and she miraculously kept enough of me on the bed that I didn't crash to the floor. I never stopped laughing the whole time, but she had worked up a sweat...and she'll be back for more punishment tomorrow...
All that being said, I'm doing okay. I know my neck is getting weakened to the point eating becomes very tiresome, and my voice is bad enough that I'm having to repeat myself almost every time I speak, but tomorrow's a new day...another start, a new beginning. I also want to point out that it's such a shame that some people are not who their words and actions lead us to believe they are...life is much too short to get hung-up on misrepresentations. Well, I should close, I have to go find my bucket.
And to all, a good night!...
Reconnections and Recollections
December 7th 2008
There are few things in life like finding childhood friends and classmates, which I seem to be doing alot of lately. There was always the select few I always kept up with over the years, but there's a certain comfort in just knowing the rest are still around..well, most of them. I'd stated before how I'd grown tired of social networking sites, especially myspace, so much trash! I joined in an attempt to keep track of my boys, and then it became a source for many PALS (People with ALS) to connect, and I got sucked right in. I'd soon learn myspace was such a perfect representation of the MTV "Jackass-generation", with it's pimped spaces and glitter-graphics. Facebook appeared more presentable, but it was initially restricted to the "student" generations. Anyway, now that Facebook is open to everyone, I find it a comfortable old friend, who's still around....
I was reading a fellow PALS' blog earlier tonight, and I was surprised to find it was more revealing than I'd expected...they had written about some things I haven't been able to approach in my blog; some of the uglier things ALS can do...to you as a person...what it can do to your marriage, your family. I guess I've been afraid to reveal something that was painful enough going through once, and I didn't care to relive it in words. I'm praying for the strength to share it here if that's where I'm led.
The pool is closed, most of the leaves have fallen, and "turkey day" is exactly two weeks away...good lord, where's the time gone? So much has happened lately, I can't possibly cover it all here; had another fall in the shower a couple weeks ago, on a Sunday, no harm done, but my caregiver was new and unfamiliar with me, so we had to get the local fire dept. guys to come over and get me off the floor. They're only a few minutes away, but the ten minutes it took for them to get here seemed like alot longer from my floor perspective. Anyway, no harm done, definitely somebody up there looking out for me!
I feel I've made alot of good changes to the site, some simple cosmetic, but others more noticeable. I've revamped the fundraising page, to include the "Catfish Chapter" store and my new Zazzle gallery. You'll also find there a banner ad for Wolfgang's Vault, a site with free classic rock concerts for your listening pleasure, as well as lots of rock memorabilia, posters, vintage t-shirts etc, and my Amazon banner widget. I'll earn funds from your purchases from Zazzle and Amazon, to be sent to the chapter, of course. Thanks for stopping by!
Another walk has come and gone. I wasn't even sure I'd be doing the Triangle walk this year; My first walk was a Triangle walk, back in September 2006. The '06 and '07 walks were held on part of the NC State campus. I guess I lost interest once I began attending meetings as a member of the first Fayetteville NC Walk to Defeat ALS, scheduled for May 9th 09. All my creativity was being funnelled to the Fayetteville walk, no more road trips, this is something to be very excited about for a pals. Long story short, some of my former team members began asking me if I was doing the Triangle walk this year; I even had a complete stranger contact me about participating. So I got the old team back together, and this past Saturday morning, October 25th, my weekend caregiver, Heather, and husband Aaron were at my door at 7:00 a.m. and we hit the road.
The weather was bleak, living up to the forecast for cool, rainy weather. This year it was held in a new location on the Credit Suisse corporate campus in Morrisville NC, opposite Cary NC from Raleigh. I was surprised at the determination of so many people showing up on such a dreary day for the cause, oblivious of the weather. Thank the Lord for Brandt, my Air Force buddy, and his wife Michaela; I would've been much soggier without his Harley jacket and her umbrella!
Without further adieu, here's a slideshow from the walk...thanks to Brandt's camera. Also, a link to someone else's (many) pictures from the walk. ..stay tuned!
Those of you that know me most likely already know I've been a regular in the Spring and fall walks held in Raleigh and Wilmington these past few years, but you may not know about the Fayetteville walk. It can really be a hassle to make the road trips for the out-of-town walks, with all the added preparations necessary for a PALS, like meds, water, Ensure, and all the other accouterments that go with being a PALS. So getting the first walk here, in my hometown, has me pretty excited. So much, in fact, that I'm working to bring an idea for a fundraiser to fruition by walk day, which is set for May 9th 2009. The idea is to have my good friend Tyna to make a quilt designed by myself, with her expert advice, to be auctioned- or raffled-off on walk day. The quilt design has the national ALSA walk logo and will include pictures of area PALS in the design. I'll post the design here once it's finalized, but we'll need to reach outside of Fayetteville to get enough PALS pictures to fill the squares...thankfully there's not enough just here in town. Until I can post the design here, here is a quilt made from walk team t-shirt designs that was on display at this year's Wilmington walk.
The weather here in the NC "Sandhills" is absolutely perfect this time of the year...why can't the summers and winters be more transitional, and spring and fall longer? I hope you have similar weather, wherever you are!!
Beat ALS, Lori's House, and a special thanks
16 Sep 2008
Found a story from a google alert a couple days ago. Bryan Osburn is a PALS in Kentucky who has a rather courageous outlook on ALS, and coping. I'll post it at the end of this blog entry. Another one caught my heart-strings, story about a PALS named Lori, who is on the edge of that financial abyss living with ALS can put us in, and she's about to lose her home for the medical bills. Click on the house to help, and make note of the request for facebook members and how you can help. I'm very happy the guestbook is up to 42 entries, thank you all! I just wish all the visitors from the live traffic feed on the bottom of the main page would sign too...that would be awesome! I love to see where my visitors are! Lastly, I want to send a BIG shout out to Drew for the referrals, so THANKS DREW!
"How I deal with ALS? I can't start to tell others how to live their lives but I will tell (you) how I plan to deal with this disease.
'Number one: I turned my entire future over to someone with a lot more power than I have. I figure that God made me and God can fix me if I'm broken. I have total trust in my Lord Jesus.
"If we read the (Bible) we find that the power of prayer is greater than anything else in this world. I pray not just for healing but for God to use me as he sees fit. I also realize that his plans for me might not be the same as what I want.
"Number two: I remind myself every day how lucky I am. When my voice isn't clear enough for others to understand, I remember all of the times I have been able to speak clearly. I give thanks for that blessing.
"When my hand doesn't want to pick up a glass of water, I remember a friend of mine who didn't have an arm for most of his life. I give thanks that I have been whole for most of my life.
"Several times in the last few days I have stumbled. I know the ALS is working on my legs but I give thanks to God for the thousands of miles that my legs have carried me in the past.
"I could go on and on but I think I have said enough to let you know how I am dealing with ALS. I refuse to lay down and give up. I refuse to let this disease ruin my life. I will go on in spite of the hurdles and (obstacles).
"I have been blessed more in my life than most. I have a wonderful wife, fantastic children, and family who are willing to do whatever it takes to help, and my trust in God.
"If you have ALS and feel like you've run into a wall, join the crowd. Those of us with the disease know how you feel. We are used to modern medicine and miracle drugs fixing most problems. Well, this is a problem that doesn't have a man-made solution yet.
"When you feel like you can't go on, have a talk with the man above. I don't have an exclusive contract with him. He is willing to help us all if we will let him."
— Bryan Osburn, October 2006
Good morning! ;-) It's my favorite part of the day...my name wasn't in the obituaries, and the sun will surely come out today, so what more could I ask for?
I want to mention Forward Focus again, I wrote about it two entries back. Anyway, Sheri told me they're up to five photographers now, that's great news for PALS!! You can check out the web site by clicking here.
Next in the line-up is Aimee's Living Story, A Legacy Kit. This is one of thousands of ideas submitted to change the world with $2.5 Million in prize money. Aimee has ALS, and hopes to leave her legacy through a system where terminally ill people can leave their memories in an online scrapbook, which eventually gets turned into a bound book with an accompanying cd or dvd...We only have until midnight September 1st to vote, so what're you doing still here?!?;-)
Guestbook, OCC, Status Update
Aug 21st 2008
Almost September? Are you kidding me?? Wow, well I hope you've all had a good summer, because it'll be the holiday season before we know it! Don't believe me? Been to Wal-Mart lately? Well, I haven't, but I can almost guarantee they're stocking the shelves with cold-weather clothing and halloween decor! Maybe my summer has gone mostly unnoticed because of my need to avoid the sun...and the sunscreen. I used to be the warm-weather type, loving the fun in the sun, but one melanoma was enough. Also very uncomfortable when all you can do to keep your bottom and back from sweating in the chair is squirm. Am I trying to justify my lack of getting out this summer? Maybe, but I'm more of a spring and fall guy these days, so I guess I'm just playing the cards I've been dealt.
In the patientslikeme.com forum yesterday, I read a thread in which the writer's idea to raise funds for ALS research was to bombard the guys from OCC, Orange County Choppers, from the Discovery channel's popular show with emails, pleading with them to build a bike to be auctioned off, the proceeds going to research for the cure for ALS. Not a bad idea, but after several PALS wrote in with their stories, pleading for them to build such a bike, their reply was that all the bikes they build are paid for up front by the individuals or corporations ordering them, so maybe the emailers should contact the "ALS Corporation". In other words, "Oh, you're not a millionaire/fortune 500/celebrity?... Go piss up a rope"! I know they've heard of a tax write-off before, so what's the problem?!? I hope they read this, especially that whiney-ass Paul Jr.! You've got nothing on Vince my man, or maybe you should just step up and prove me wrong!!
I really appreciate all you plm'ers who have signed the guestbook, especially those of you who posted pictures and comments, keep em coming!! I have another idea (always something) that could replace my "ALS/MND Links" page, maybe eventually. Anyway, if you're a user of "del.icio.us" bookmark/tag site, and you're a pals or cals, we should set up a pals network of links there. I'm "swhite.geo" on there, so let's share bookmarks! Well, I've rambled-on, and running out of gas quickly, so hasta lasagna! ;-)
Making progress
Aug 17th 2008
I've been such a procrastinator, keep putting off the broadcast email to announce this site to my address book, friends, and fellow PALS, or people with ALS. Even though the page counter is in the 800's, most of those hits are from my own edit and review process, baby steps. Now, however, I think it's safe to say I'll never be completely satisfied with this site, as there's so much to keep learning, so if I don't go ahead with an announcement, it may never get done. I am a little proud of this site though, created from scratch using Windows Notepad and html, with the help of a few embedded scripts and style sheets. If you're reading this as a result of receiving said announcement, I appreciate your valuable time, and wish I had the energy to pour out my soul to each and every one of you on a personal level.
Yesterday, I ran across the site Forward Focus, and I thought it's such a great idea it's worthy of mention here. Forward Focus, started by Sheri Allison, a photographer from Statesville, NC, is a fledgling network of professional photographers who have/will donate their time and resources to PALS and their families to document their memories through free portraits! Right now, this is only for NC PALS, but I can see this really taking off and growing rapidly. If you know of a PALS in NC who may be interested, drop her an email here. If you know of a professional portrait photographer that may be interested in volunteering for Forward Focus, please direct them to the site. And thanks Sheri, for putting my links on your site!
Can anyone verify this video?!?
Aug 8th 2008
So, I'm a big fan of Kim Komando. She calls herself America's "Digital Goddess". I don't know what year her radio show on "all things digital" got started, but I remember looking forward to Sundays in Germany, listening to...what else, American Forces Network, mostly because that was the day I'd take the cars to a nice, shady location for detailing, weather permitting, and I'd tune-in for "Car Talk", and then Kim's show. Now I'm subscribed to Kim's tips, downloads and videos "of the day", and catch the show whenever I can. I particularly enjoy the videos of the day, and today was compelled to submit a recommendation for this video for her to air. So before this thing goes viral, especially if she chooses to air it, here's your chance to see it...and judge for yourself...will it change the way you use your cell phone?
There's no time like the present to broadcast the word about this site. What began as good intention to make the "mother-of-all" ALS links pages has blossomed into, well, something similar, but hopefully heading in that direction. I've used Evrsoft's free 1st Page web design software, but I always end up falling back on good old, bare-bones html editing from scratch using notepad...less surprises that way. I'm attempting to learn css to get better organized for making updates, but implementation seems a long way off right now...I've been using the W3C's web authoring tools to learn it. Anyone that knows of any good (free) online css tutorials, please drop me a line at the contact link in the toolbar at the top of the page. Meanwhile, check out the new mp3 widget, on the home page for your mp3 downloads; proceeds going to the ALS Association, Catfish Hunter Chapter, as well as my Amazon Associates store on the fundraising page.
July Showers bring...?
July 10th 2008
Feeling like I have no more of a spine than a slug today, a result of getting my first massage in about five months, even though I got it two days ago. My massage therapist, close friend Tyna, was in an accident back in Feb(?), and both bones in her left forearm were broken. She's finally recovered, thankfully, and is now back to the massage business. Anyway, I'm so bad about not making blog entries, and don't know where the time's going, but I fully intend to make regular entries. It's been too hot to do much outside, and we've had so much rain, a blessing because we were close to 10" below the average annual rainfall, and now we're at a 5" surplus. Therefore, if it isn't too hot, it's too humid, or raining, which doesn't go well with my powerchair. I was able to get out to see the fireworks at Ft. Bragg's annual show, thanks to Perihan and Alan. We did see Wynona(the one and only) standing out by her tour-bus after her performance, which we didn't get to see. Now I've seen both her and her mother here in town. The fireworks were nice, though they started 30 minutes late from a threatening storm and short drizzle, but they were over before we knew it, about 30 minutes. I always enjoy seeing the 105mm howitzers accompanying the 18th Airborne Corps band's rendition of the 1812 overture. Not many Americans can say they can see that every year on the 4th. Early nap today...til next time, keep smiling!!;-)
I'd like to utilize this space by giving credit where it's due. I learned of the Wayne County Cruisers car club in 2006, when they so generously donated the kitty from one of their car shows to my Walk to D'feat ALS walk team, Steve's Striders. That donation didn't just happen by coincidence, or from solicitation, which brings me to my good friend from my USAF days, Dolly Witt. Dolly is the type of friend we all should have, and makes the world a better place through pretty much everything she does! There are those who are successful, and then there are those who are successful and make a real difference, and I feel the difference is as clear as black and white! Anyway, I was more than humbled by the club's more than generous donation in 2006, and now they've outdone themselves with their donation for the up-and-coming 2009 Fayetteville NC Walk to D'feat ALS, the first for my hometown! So Dolly, I hope you and your fellow car-club members know just how much your donations have meant to me and the rest of the estimated 300 North Carolinians stricken by this disease! BTW, thanks for the club shirt too!! Here's the picture I promised,taken 24 Jun 08.
Good Times, Bad Times...
06/12/08
I've been going through quite the roller-coaster ride of emotions lately, for reasons I'd rather not revisit right now, but instead, I want to tell the world about one of my amazing friends! I know her from Mom and Dad's church, having met her there before Mom brought her over to visit me one day. I thought she was very nice, but you know how some people can appear so nice when you meet, only later you learn their niceties were nothing more than a put-on, like offers of a helping hand from a leper? Well my friend Judy is so far-removed from the usual, well-intended, albeit empty offers of help! Over the months I've been fortunate enough to get to know her, she has become one of my most valuable friends. She introduced me to "Oral History" by NC author Lee Smith. Judy's ability to project visualizations into my consciousness has enabled me to escape ALS to another world, taking on the true life of each character with her eloquent reading style! She is a spiritual, Christian mentor, my master gardener, and sounding board for when I've just needed to sound-off about my frustration-du-jour.
Today, Judy was here reading from an inspirational book, a short story about the power of prayer, while the RN was here doing her weekly visit, vitals, and refilling my pill boxes. Well, while she was reading today, she took pause to say she'd just had a vision of me speaking before a large group! She's always commenting about how good my voice is sounding, but wow! That was unexpected! At the same time, something she had read in the story somehow inspired me to start a prayer chain for PALS, people with ALS. I'm envisioning something similar to a family tree, starting with me praying for all my fellow PALS in NC, and watching it grow from there. I humbly welcome any input on the subject. Please send it to im@stevewhitenc.com. Thanks!
Life with Uncle Lou
Another entry in the continuing series on “You asked me how I’m doing"…only nobody knows how long this series will run, but I think the critics must be too kind, it’s been six years!
It’s very difficult to put into words what it’s like to wake each day with the challenge of living with ALS. Hopefully my stories and anecdotes here will shed a little light on the darkness of this dreadful disease.
Yesterday, as part of my medication regimen, I was taking a docusate sodium, a standard stool softener, by mouth with water. This isn’t the largest pill I’m taking, but for whatever reason, this gel-cap type of pill immediately stuck to the inside wall of my throat. For anyone with
swallowing difficulty they’ll understand this right away: there’s a kind of pocket right around where the high and low roads meet, and it’s often difficult to tell if there’s something stuck in there until you either eat or drink something else, or it begins to dissolve, when you begin to taste the reason why these things are strong>not supposed to do this anywhere near our taste buds!
I’d experienced this before, but with Riluzole, the one FDA-approved, over-priced,ineffective medication for ALS. Extremely uncomfortable, as it burns the throat, the more it dissolves, the more it burns. Been there, done that, but now I get that one in my feeding tube, crushed and mixed into a chemical cocktail I can thankfully bypass the taste buds with. But this was different; the more this one dissolved, the more I felt the lump in my throat grow. OMG, my throat is swelling together!! Thankfully, my airway remained open through the night, but this one had a delayed burn-in affect. Boy, talk about your side effects! By the time I went to bed, I was afraid to wear my bipap, I was having enough problems as it was without that! And the burning was so bad, it was extremely uncomfortable to swallow. Needless to say, I didn’t sleep too well. Today’s been a recovery process, hot liquids, don’t push it, early nap, etc. Tomorrow will be day two of my recovery from this medication faux-pas, one I fully intend to never repeat again!!
My initial foray into the blog world began as an afterthought, but out of necessity. Somewhere along the road, I realized how many times I’d written the same thing in different emails…replies to my friends’ good-natured queries about the state of my health. So I began blogging my replies… Windows Live Spaces, myspace, facebook…yuck!! Not for me! So I ventured out and purchased this little fixer-upper, my abode for all who care enough to come in.
Two days ago, Thursday, I found myself craving a good old pb&j, peanut butter and apple jelly sandwich. I don’t care who you are, I think it ranks right up there with baseball and apple pie! So I had Perihan prepare it, extra jelly so it wouldn’t be so difficult to swallow. I hadn’t had a god sandwich in.. I don’t know when. After the second bite, I realized my tongue was too weak to pry it from the roof of my mouth. In fact, I’d become so distracted by this that I hardly noticed the jelly sliding down my wind-pipe! Aspirating apple jelly does not make for a pleasant lunch, trust me! Matter of fact, it was over on that second bite…I coughed for thirty minutes straight!!
Now Saturday, two days later, and I don’t ever remember my gut being so sore from the coughing. And to top that off, I have one of those days-long headaches, that seems to start in your shoulders and radiate right up up your neck.
Interviewed a caregiver for weekends today, we’ll see how she works out next Saturday.
- 
