Did You Think I Was Done? I Had Only Just Begun ...

Grrrr More Power Naps ...

Where do I begin?    We (family) were at a dear friend - no, a family member's funeral and during the eulogy I apparently needed to read something on my eyelids.  I felt a hand pat my shoulder and I jumped (like anyone would if startled).  My nephew (the hand) whispered he was sorry and he did not mean to startle me ... I turned to see if anyone noticed and saw my niece grinning and Darren (her fiance) was doing that quiet laugh (that laugh you do in church because you should not be laughing anyway) and whispered, "That's awesome?"  The entertainment I provide ... free of charge and certainly unscripted.

Enough ... I can do power naps and not tell every one, if they are normal naps; however ... I was eating potato chips and the next thing I remember was being on the floor with my face mashed on the carpet and somebody banging on the front door.  I figured out where I was, got back on my chair and answered the door.  The UPS delivery guy proceeded to tell me he saw me fall out of my chair and he was concerned  and wanted to make sure I did not hurt myself.  I told him I was fine, received my package and thanked him.  I only hope he did not have his phone on video mode ... I feel sure he told his UPS buddies he had the story of the day.  So, if anybody sees me on UTube ... oh yeah, laugh!  If only earlier in the day mom had not come in and found me with my head on the desk (I was waiting on the computer to catch up with me and my thoughts!)

If that was not enough, Wednesday and Thursday the week of Christmas I found myself fighting to stay focused (my speak for not zoning out) and found out that Marcia would be talking to me ... struggle as I may to keep my eyes open, I was not engaged in her conversation.  Since it did not appear it would get any better she said it was time to go to bed ... she changed and came out to the living room ... to find me in racing mode to get where I was supposed to be because I took a nap getting there!

I guess it is scary when I have scissors in my hand to open packages!  Will I open the packages or ... Zzz?  These naps are going to get me in trouble yet! 

It was like Christmas everyday!

Because Marcia and I shopped on-line for Christmas presents this year (on-line ... my specialty!) it has been like Christmas at least twice weekly.  Poor delivery guys ... they have to be quick thinkers!  If our dog, Maddy, is in the house when they drive up (she hears them at the corner) she barks and attacks the window as if she would tear their limbs off.  Delivery guy asks ... do I drop and run?  On the other hand, if it is quiet when they approach the door ... they ask themselves ... do I ring the bell and keep my phone ready in case I can get a funny video of the lady falling out of her chair! 

More Favorite Things ... Years ago Marcia and I vacationed in St. Thomas and learned about tax-free ports and Louis Vitton.  We purchased our first LVs on that trip and that has remained our purse of choice since.  We rationalized then that this was a good buy because we did not, and never had, bought or changed purses to match our shoes or the season.  We did not buy several purses a year ... we could justify spending more on the LV bag of our choice and it would last longer.

That is our story ... and we continue to stick to it!

More Sussies ... While it is quite possible to cast me as an impulse buyer, Marcia and I do not always just see something and buy it!  When the price of gold rose, we went through our jewelry and pulled out the pieces we no longer wore and the pieces that were broken or were missing a match ... not once, but twice.  We took our "lode" to our friendly, favorite jeweler and received an in-store credit (oh, darn) and, well you know the happy ending to that story!

Insights I Am Grateful For

There are times when I am home alone and I think too hard and wonder, why me ... and I cry because nobody can see me ... I need my eyes to leak.  I want so badly to walk in my really hot shoes that rock or wash the dishes or file papers without dropping some of the paper.  I get so frustrated, it wears me out.  Then I remember the things that I have and the things I am grateful for.

• I cannot stand or walk and require a motorized chair to get around.  My hands have atrophied so I have no use of my fingers ... I cannot blow dry or brush my hair or write without using both hands (for guidance).  I require others to do most everything or get me to a point so I can do some of the task.  While it was humbling at the onset, I still have my dignity.  No one can take that away.  I am grateful that I understand I am not my body or my thoughts ... I am the space, the shell, from which all is created.
• I sit all day and some of my physical form looks squaty and odd.  I am grateful for my circumstance that counteracts my vanity.  (Well, somewhat.)
• Because of the kinship I share with the friends that choose to help me, I cultivate a calm compassion for circumstances that I have no control over.  I am grateful for the empathy I experience.
• I am nearly always present in the moment (I said 'nearly').  I have become a better listener ... this keeps me from dwelling on the past or thinking too much about the future.  To really live life we have to be in the present - without coloring it with thoughts of the past or future ( stay inside the lines).  I am grateful for the happiness I feel in living in the NOW.
• I am most grateful for my loving family.  I am so very blessed to have both of my parents and all of my siblings, my nephews and my niece and their families here with me ... to be my towers of strength - my rocks - as we walk this path of uncertainty and the unknown.

I have also learned something about myself.  I love to make people laugh ... the sound of laughter and the smiles it evokes.  I am grateful for my sense of humor. 

I am not out there in the public, speaking about my affliction and how I cope, nor do I want to be ... I never did like that arena.  I am not saying these are the cards I was dealt, do you want to see them, let me show you how to play them.  I just hope that maybe even one person might begin to realize that suffering is caused by our thoughts, not the circumstances in which we find ourselves.

My Blog Quote

Have a very happy and safe New Year my friends! 

Everything Remains the Same

Okay, since my last writing I have been to my MDA clinic for follow-up with my neurologist for my ALS, I rolled in the annual Walk to Defeat ALS sponsored by the South Texas ALS Association and have been shopping for Chrismas (my favorite kind of shopping trips ... on-line).  Oh, I have changed the background for this blog, as you can see.  I have also been tweeking it to have other points of interest.  I hope you all like what I have done!  You can make comments to let me know what you think. 

All-in-all my clinic appointment at the end of October was uneventful.  By that I mean my ALS (sounds almost endearing) has not progressed.  Please, do not get me wrong, that is very good news.  Better news yet, it appears my upper body strength is better than my prior visit in June.  I will be challenging friends to arm wrestling matches soon (ha!).  So, I continue with my medication, B-12 shots and miscellaneous vitamins ... continue stretching and exercising my hands and legs to fight off worsened contractures ... continue to work at maintaining, if not bettering, my upper body strength ... and my next clinic appointment is in six months.

Cindy (my sister and in charge of my MDA clinic appointments) and I decided to go to Hobby Lobby on the way home from my appointment.  Looked around, did not see anything we  wanted so we left.  For some reason we could not get me transferred into the car (we were in my niece's SUV - one of Chevy's smaller SUVs - and we seamlessly transfer in and out of it regularly) ... on the fourth try I sat on the floor board and told Cindy to leave me there and just drive home.  So, this is mentioned because this is a first for me ... and for some reason we get tickled when we tell this story.  

Oui Walk - Oui Roll Walks to Defeat ALS

On October 23 the South Texas ALS Association hosted their annual Walk to Defeat ALS. The ALS Association is the only non-profit organization fighting Lou Gehrig’s disease on every front. Through a nationwide Chapter network, the ALS Association leads the way in global research, coordinates multidisciplinary certified clinical care centers, supports the people and families of those affected by ALS and fosters government partnerships. The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.  The South Texas ALS Association’s 2010 goal is $225,000.  Oui Walk - Oui Roll apparently wrote the book on fundraising for a cause ... my team raised $5,100, which put us in the top 10 teams for fundraising for the cause.  How fortunate am I to have such a wonderful extended family?  

Oui Walk - Oui Roll

Left to right - Back row: Bob Norris, Jeff Marcum, Carla Sanders, Darren Peters

3rd Row:  Veronica Getty, Margaret Neel, Bill Neel, Martha Holmgreen, Marcia Hidalgo.

Lisa Arizpe, Sam Arizpe

4th Row: Gina Garcia, Caroline Clopton, Anna Holmgreen, Cindy Holmgreen, Nadine

Hidalgo

Front Row:  Veronica Perez, Levi Perez, Deb Hidalgo, Adreann Holmgreen

What Have I Been Up To?

Me, work?  I signed up with a company to answer questions that are sent into the company, you know ... those people who are too lazy to search for themselves, but can sit there and text into their phones (go figure).  It is a mobile answers text service where people utilize both the text AND mobile answers voice service - asking the company millions and millions of questions every month.  I still have to go through their "Search University" to see if I have enough knowledge to search for other people.  I know I can search sites to shop from!  I will let you know how that goes once I test.

Have I Mentioned My Cookbook?

Last year my sister, Marcia,  and I wrote a cookbook, Oui Deux 2 Cook, inspired by all those little bits of paper that fly out of cookbooks when opened.  I mention this because we are currently collecting favorite recipes from the family for the next cookbook.  This is no easy feat, considering there are family members that still write their recipes.  I asked them to submit a story with their recipe ... right, they should all know by now if they do not tell me a story about their recipe I can make one up!  It is also turning out that we are going to have to prepare the recipes so we can take pictures.  My challenge ... coming up with the graphics for the cover ... the name of the cookbook ... Oui Deux2 Cook II.  I will let everyone know how that process goes.

I have got to get this posted ... I have started a new post and will get it done quicker!

I Know I Say This All The Time ... I Will Get Better At This!

I am a huge fan of dictionary.com and enjoy receiving Word of the Day and other grammar and word tidbits published.  When I worked ... well, when I left the house and had co-workers - not dogs and cats ... a few of my co-workers and I  "played" Word of the Day.  We would use the word in correspondence among the three of us and during our weekly meeting, if possible.  Bosses out there would benefit from use of this site (not sure whether to use "there", "their" or "they're") ... please tell me you did not just high-five me because I used a "good" word! 

Anyway, one of the "extras" was information on punctuation and the mark that got my attention ... the INTERROBANG.  It was created to fill a gap in our punctuation system where writers often used typographically cumbersome and unattractive combinations of the question mark and exclamation mark to punctuate rhetorical statements ... where neither the question nor an exclamation alone exactly served the writer. (HOW ABOUT THAT?!)  The creator, M. Speckter, called his mark INTERROBANG from the Latin for query and the proofreader's term for exclamation.   The INTERROBANG can convey in print an attitude, curiosity, and wonder. 

Because interrobang just does not roll off my tongue easily ... I think I will go with QUESCLAMATION ... that just sounds fun.  Okay, not everyone gets as excited over words, grammar and usage as I do ... note to self - I have to get a life.
 

When a question mark (?) alone just is not adequate and, quite honestly, a response is definitely not desired ... use the quesclamation (‽).  After reading an email already sent out you reply to the sender, "You used spell check, right‽"  Interested?

• Go To: Insert Special Character
• Font: Arial
• Subset: General Punctuation
• Choose:   ‽
• Press:   OK

I have used the quesclamation again in this post ... wonder if you will spot it.

Living with ALS ...

I wonder, some times, if I am taking my diagnosis of ALS too lightly.  From About ALS: Symptoms - ... "As the weakening and paralysis continue to spread to the muscles of the trunk of the body the disease, eventually affects speech, swallowing, chewing and breathing ..."   The weakness remains in my legs and hands, but when I am not feeling well I catch myself taking in deep breaths and expelling it very slowly being sure to use my diaphragm muscles or reading out loud, enunciating all my words, listening carefully to make sure I am not slurring. 

While I can not walk, I can knalk (walking on my knees), so I have good muscle strength from ooching up on toilets, bath chairs, transfer boards and motorized scooter.  I also have good upper body strength from transferring and pulling myself up in the bath tub and onto my scooter.  I will say that I have more tone in my arms now than I ever did prior to my ALS diagnosis.  It could be my form of ALS - considering the contradictions with the neuropathy - stays where it is.  Maybe I just feel that for my family, for now, I hope that I am an ALS patient that has slow progression ... or better yet where progression stops - for reasons yet to be defined.

Yes, my glass is still half full.  Oh, the rose colored glasses came off along time  ago.  I much prefer the reference of a glass half full ... sounds much more positive and somewhat refined to me!

Grrr ... More Power Naps

Back on September 11 the Hidalgo clan here in San Antonio - all 4 of us - were invited to Alice for a special induction ceremony.  Mrs. Holmgreen, my brother-in-law's mother, was inducted into the 3rd Coast Squadron Commemorative Museum Hall of Fame.  She was an army nurse in WWII and served in England and France.  The ceremony was held in a hangar at the Alice Airport and was a 1:30 p.m. event ... really cool old planes and memorabilia throughout the hangar.  It was truly a very nice ceremony.  I was hot, but so were the inductees some of  them 90 years old.  All of a sudden I felt Marcia smoothing out my hair ... she was actually popping me on the top of my head because I dozed off and I guess people were looking.  Right at the end of the ceremony I could feel my eyelids slamming closed, but I thought I put toothpicks in them.  I swear it was just a few minute doze, though.

After the ceremony we all headed to Mrs. Holmgreen's for a feast of German pot roast (prepared by my brother-in-law, Jim and my Cajun daddy) and all the yummy fixings.  Dinner was scheduled for 6:00ish so we were all hanging out munching on snacks and sipping on Fast Eddie's Sweet Tea Vodka (distilled, or whatever they do to make vodka in Austin).  Yummy!  I moved from my wheelchair to a recliner so I could elevate my feet.  Well, I apparently slept through all the hanging out munching ... etc.  Adreann or Darren would take turns waking me up every now and then, laughing of course, and give me a snack.  I would talk for a few minutes and ... well you know the end to that story.  Grrrr, those darn power naps!

More of My Favs

I just bet you are wondering what other "favorites" I have.  Fresh Produce ... well in south Texas we can shop H-E-B, oh okay WalMart and Super Target.  Being an H-E-B shopper I reference them when talking about grocery shopping in general.  Oh yes and Central Market (and I love Central Market), but I am going to speak to "normal" shopping.  I just did not feel  like tomatoes tasted like tomatoes or that yellow squash had any taste at all.  I will not even go into selection, or lack thereof, at the store closest to us for shopping.  Mom and I were actually looking into the different Farmer's Markets scheduled in the area.  Then we  walk into  Straight from the Crate  in Universal City. 

I can actually do all my produce grocery shopping at Straight from the Crate. I bought beef steak tomatoes that, when sliced, one slice covered the entire slice of bread.  Yes, those bacon, tomato and avocado sandwiches were the best!  While mine was cut up because I can not lift a sandwich ... I had visions of it running down my arm ... the sign of a truly great tomato sandwich!

The owner, Lee Stofa, actually took the time to demonstrate how to cut up a mango ... and the mangos were so sweet and good.  Lee emphasizes that if I know what I want ahead of time to call in my order and it would be ready ... Lee just does not know how I shop ... can you say impulse shopper‽

Potatoes - baking, new, russet, sweet; onions - red, white, yellow; tomatoes - vine ripe, cherry;  okra, celery, squash, zucchini, green beans (already snapped or not), corn, carrots, hulled peas, watermelon, cantaloupe, strawberries, blueberries, pineapple, lemons, limes, oranges, bananas -- this is just a small list of what Straight from the Crate offers and why I say it is a complete produce shopping trip for me.  Lee carries as much Texas produce as he can, but obviously bananas are not grown in Texas!  Love, love, love this produce market!  You can find Straight from the Crate on Facebook or at 904-A Pat Booker Road, Universal City.

Chocolate ...

Have I ever mentioned how much I love chocolate?  Oh, and raspberries?  No, hmm ... missed that, but picture this or imagine the taste of this:

+



I will leave you with that virtual taste.  A small spoonful of chocolate chased with a shot of Razzamataz ... truly heaven!  I promise it is legal!

Wishing everyone chocolate and raspberry dreams ... yummmm!  Deb

Every Other What? What Happened ... Oh and Power Naps

Yikes, I said I would be blogging from New Orleans and regularly ... obviously I set myself up ... so, here I go!

New Orleans was great, as always ... once again, I did not want to come home!  I could live there in a heart beat.  Well, they would have to fix those sidewalks!  Those broken slates nearly threw me out of my wheelchair - oh, a couple of times.  People walking would just stare because we (me, Marcia, Adreann and Cindy) were laughing so hard!   Just get me to Harry's so I can have a Bloody Mary!  Humidity caused Marcia's hands to slip on the handles of the wheelchair and I was headed directly into a car (Adreann ... it was a scream for help).   Yes, there was lots of laughing and somebody saw us - we probably looked like the Keystone Cops.  Please, get me to Harry's!  We walked into Harry's ... the guy who saw us greeted us with, "Hey I just saw you almost crash".  (Laughs and snickers.) 

On the trip back to SA ... we flew Southwest ... have you ever seen the Captain leave the cockpit to help the handicapped on to the plane??  Well, that is who came to wheel me on board.  Plus, he asked how best to transfer me into my seat ... we already had that under control.  I was so impressed.  First time for everything.

No news on my ALS right now, my appointments are at the end of September and October.  I have a team ... Oui Walk - Oui Roll ... walking - I will be rolling - October 23 in the Walk to Defeat ALS (raising awareness and funding for research) here in San Antonio.  Please let me know if you are interested in walking with me.

I am going to borrow from a blog I follow ... and let everyone in on some of my favorite things.  It will be fun!

Fleur de lis

FLEUR DE LIS - While this has always been seen throughout Louisiana relative to the French settlements in the southern most parishes ... many of us see the fleur de lis and think ... WHO 'DAT - GEAUX SAINTS - WE BELIEVE! 

After Katrina, the fleur de lis came to symbolize the rebuilding and rebirth of New Orleans and the belief that the city would come back from the disastrous storm.  Many retailers carried small coins with the fleur de lis on one side and BELIEVE on the reverse side ... a portion of the sale going to the rebuilding of the city.

Marcia and I have always used the fleur de lis in our decorating, inside and outside ... now we seem to  have more choices to pick from!

Ok, have we not read that power naps are really good for us ... our brains wake up, we are energized and we actually get some really good work done.  Well, "may cause drowsiness" (on one of my meds) is probably an understatement and dosing off because of these pills may not really be a power nap, but that is what I call it. 

One day I went over to a trash basket behind the couch (kind of in a little corner) to toss some trash.  Well, next thing I was startled and woke up ... all the lights were on and the TV was a blue screen with  AT&T - PRESS OK.  I freaked thinking Marcia and Adreann were going to be late for work and why were all the lights on.  I could not quite shake myself awake and get moving to wake the girls up.  About that time ... I heard a key in front door and in walked Marcia. 

I explained everything and Marcia asked how long I napped - in my motorized chair.  I told her I thought it must have been maybe between 2:30 and 3:00 when I went to the trash basket - so that would be 3 hours (it was around 5:00ish when Marcia came home).  By then we were both laughing ... WOW!  Long power nap and I put myself in a time out by the trash basket.

For about a week or so I could blink, be in the middle of a conversation and be asleep - and jump to hands clapped directly in my face.  Another favorite tactic was when somebody said very loudly, "Debbie, are you asleep" ... I would jump, shake my head and respond with a very convincing no.

Oh, and if the computer took just a second too long to think ... Bingo ... I napped.  Yes, a funny thing happened before I woke up ... I slipped right out of my chair.  I woke up (with that weird where am I feeling) and wondered what happened.  I then realized I was on the floor - in a tight spot, on my back, between the wall and chair.  I had to ooch my way out to get to a place where I could roll over, get on my knees and get back on the chair ... taking a 30 minute nap in the meantime!

I knew I could not keep that to myself.  Good laughs on that one!  Needless to say, there was a period of about 2 weeks I could sense Marcia, Adreann and Darren (Adreann's fiancee') looking at me:  was I awake or were my eyes closed.  Sure am glad "may cause drowsiness" just lasted a short period!  Dreading when that may rear its ugly head again.

Sussies - Because We Are Worth It!

Okay,  I have to blame Marcia on this treat ... well, duh, they are located in the same building as Presidio Title Company (where Marcia works) in the Texas Capital Bank Building.  I may be in a wheel chair and my wrists may be 5" around, if that, but I still love bracelets and necklaces, oh and diamonds.  I also have to mention that when Michelle and Kelly (the owners) went to Las Vegas ... the jewelry show to end all jewelry shows ... they saw a bracelet that they said had Marcia's name all over it (and mine by default).  The bracelet came in ... a bangle type with 2 fluer de lis and diamonds on the band of each fluer de lis ... it was too small for Marcia (can we say, aah).  It was put back until another bracelet came in for Marcia.  A little situation happened and I said I needed my bracelet now.  Marcia's bracelet still has not come in ... but I have mine!  I will just say we always have a reason (or not) and Shetler & Wade are always accommodating!

Until next time, paint vivid color pictures of my power naps and have a good laugh on me!  Oh, you can paint a colored picture of me and my new bracelet, too!

Deb

A Funny Thing Happened On My First Jogging Adventure ...

Marcia's boss has graciously given me the use of two motorized chairs.  I was finally ready to go jogging with Marcia and Adreann on the "outdoor, all-terrain, helmet required chair" ... we left the house and got to the stop sign before leaving the subdivision, when I  felt I was not going as fast as they were.  I then screamed - over my tunes on my iPod - I was turning around because I thought maybe I was "running out of gas," so I would see them at the house.

I turned around to head home and that was as far as I got.  I managed to get mostly out of the street and onto the sidewalk ... a little catywompus, but out of the way.  I decided if my back was to the street drivers approaching the stop sign would stop and drive on.  My tunes playing loud I am sure I was a lovely vision ... head bopping, body dancing, singing louder than my iPod ... but I did not think people would bother with me.

Well, every car that stopped either yelled louder than my music or tapped their horn to offer their help.  This chair weighs about 170 pounds, but each truck that stopped asked if they could help me home - they could load the chair on their truck.  Those kindly people did not look like Hercules.  The people in cars that wanted to help me home ... what was that process going to be, me holding on to the door handle while they "towed" me in?  Very loudly (over my music) I politely responded "thanks, my tow truck is on the way" or "thanks, I am OK ... I beat my fellow joggers and they will be rounding the corner in just a few."  

This went on for what felt an hour, but what was maybe 15 minutes.  Singing with George Michael & Aretha Franklin, "I knew you were waiting ..." Marcia and Adreann rounded the corner to see me.  Laughing, they were somewhat surprised to see me, but more surprised at the task of pushing me back to the house.  In shifts Marcia, then Adreann and together on the final uphill push to the garage.  More tired than their jog, I was fine and apparently told them I wanted on my "indoor chair."  I was told I could wait until they got their breath and cooled down ... I acquiesced and sat still until they were ready to help transfer.

I have not jogged lately.  To end this, the only car that did not stop and ask if I needed help ... two police cars that I saw paused and "chatting" ... and it was during one short period when no other trucks or cars stopped and got my attention.  At the time I only thought, "gee, I hope they don't stop and ticket me for improper parking."  I guess they were hungry, it was around 6:30ish.  Hhmm.

I will start posting my adventures with ALS every other week.  You will get special posting next weekend from the French Quarter and my adventures with my sisters and niece, Cindy, Marcia and Adreann.  Until then ...

For as long as I can remember I loved shoes ... really hot shoes ... shoes that rocked ... and I wore them well!  Then I guess about 2 years ago there was an occasional stumble and maybe a fall ... and we all laughed that I touched a voodoo doll or the bottom of my shoe stuck and tripped me!  Who could have imagined then what the road ahead had in store for me! 

Because none of my doctors could figure out what was wrong with me they decided I needed an MRI.  When I reported for the MRI it was actually 4 MRI's ... 2 hours I was asked not to move ... no small task for me!  Thank goodness, I was told I did have a brain.  Then the doctors wanted an EMG/NRV study ... shooting electric shocks through me and sticking needles into my nerves ... I asked the doctor to please never do that to me again!  So that more tests could be done I was admitted to the hospital and in September 2009 I became a human pin cushion.  I was poked and prodded ... every day for 15 days. All the tests said I was negative and unremarkable.  Hmm!  Unhappy that they were still unable to diagnosis my problem a nerve & muscle biopsy was ordered.  Finally, in February 2010 my doctor gave me the diagnosis of ALS.  With that said, I am still reading about this disease because I have so many things that contradict ALS. 

The road to discovery has not been grim!  I can not walk, so transfers from wheel chair to car and vice versa are all too often "where was the video/camera" situations!   Questions to me about if I have fallen ... get turned to have I been dropped!  Laughing is all we can do ... and trust me we laugh hard.  When a normal transfer is out of the question (riding in a SUV) I get thrown head first and shoved in or hoisted and thrown in.  To those that take me places it is always a learning, growing and laughing situation.  Marcia & I always have to laugh when people see us get into her car ... a Lexus 2 door coupe ... they do a double take.

It was last week when I finally went through all my shoes and gave them away for a garage sale I realized it would not get better and I would not be wearing those shoes again.   I can; however; shop, buy and wear sandals that rock!