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The Road Before & After Surgery
April 5, 2018
Feeling... Comfy!
Mood:  cheeky
Now Playing: Day 3011-Chapter 3... Happiness~My Silver Lining

 

1. comfy - providing or experiencing physical well-being or relief (`comfy' is informal); "comfortable clothes."

The above describes me perfectly... especially today! 

OldcomfyshortsHA2.jpgThe attached is totally what a bit too much of that comfy feeling looks like over a decade later... HA! My favorite pair of comfy shorts that need a bit of stitching TLC this weekend. Oh come on now... we all have that one article of clothing that still stands the test of time. Even with now built-in waist air holes to boot! HAHAHAHA!

Eric absolutely hates these super comfy shorts of mine that I refuse to part ways with in this lifetime. It's no wonder he earned today's Podcast~Blogcast video! Hehehehehe!!

These are my ultimate go-to comfy shorts! My single one comfy clothes item that means my a*s ain't going nowhere today... literally! Hahahahaha! Unless... I plan on sharing the color of my drawers! BAH! Eric said one of these days they're going to magically disappear... POOF! But I say, "No way!" These shorts are here to stay!

There's nothing wrong with keeping a favorite article of comfy clothes that hopefully will last for a lifetime if you take good enough care of it.

For me... it's my SUPER comfy shorts! Just in time to add my big fluffy sweater and plug in my electric blanket to watch the first episode of Jersey Shore Family Vacation... YAYYYYY!

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#MyHappyPlace

www.gastroparesisawareness.com 



Posted by GastroparesisAwarenessCampaignOrg. at 10:41 PM EDT
Updated: July 5, 2018 4:52 AM EDT
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April 4, 2018
How To REALLY Annoy Your Spouse! HAHAHAHAHA!!!
Mood:  chillin'
Now Playing: Day 3010-Chapter 3... Happiness~My Silver Lining

 

You know what today's blog is all about?

It's totally all about how to really annoy the bejesus out of your husband when your not feeling well... COOKIE MONSTER! HAHAHAHAHA!

I am finally starting to feel the pain with both of my lungs and the lower left lobe obstruction. This really made for a not-so-great night of sleep. My Critical Care specialists were finally able to control the inflammation a bit with an addition of another medication which somewhat helps. All of the latest medical findings really still has me baffled and quite concerned with how the end of my journey is going to unfold as far as suffering. Just when we believe I am done with another organ failing me... I am met with the next great challenge.

My life has not been an easy one as far as medical struggles which started not long after my birth. With recently having my care  now being taken over by an advanced team of Critical Care specialists means finally receiving those long overdue answers with regards to my health continuing to decline. What we now know is unfortunately the majority of what I have gone through in this lifetime is due to autoimmune issues which have now greatly advanced as my body continues to attack itself... my organs.

With far more understanding means having the ability to figure out how I will live the remainder of my life. One which I have decided it to be lived out peacefully and very happily.

I have grown... and I have learned through out my journey. I no longer feel the need to subject myself to snarky comments by those who will never, nor would they ever... understand.

Hopefully by continuing to write about my journey, it will also be of great help to others whom may also be struggling in their own personal Journey.

Myself and Eric were hopeful that they would be able to place me on the lung transplant list. However now that we know everything is coming down to a major autoimmune issue... they can not place me on any type of transplant list due to the realization that my body would also go after any type of transplanted organ. This leaves my Critical Care specialists in a position where there is not much else they can do for me. Some days are good and of course... some days are going to be bad. 

I have been down the same road through out my journey since the beginning of birth and it hasn't been an easy one. But at the end of the day... I keep going. God could have not given the greatest battles to a far stronger person... me.

If there is any silver lining out of learning that my condition continues to advance with no end in sight... is the realization that each and every day there is still a reason to smile and OH MOST DEFINATELY a reason to laugh!

 And of course... when you're not feeling well and really in the mood to just annoy the bejesus out of your spouse... just remember the COOKIE MONSTER

HeheheTongue outhehehe!!



Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: July 5, 2018 4:56 AM EDT
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April 3, 2018
Cookin' With Little Ole Me~VEGAN STYLE SOUTHERN GREENS DE'LISH!
Mood:  on fire
Now Playing: Day 3009-Chapter 3... Happiness~My Silver Lining

 

You know what I'm going to do with all the recent bad news? 

Why of course girl!

I'm going to get myself to COOKIN'... and I'm going to do so with a huge smile and plenty of laughter! So I've been asked more than a few times or two... will I be posting recipes to share with everyone? You bet I will! Wink

Behold... this evenings first of many upcoming cooking blog episodes with Little Ole Me~

The first cooking episode is all about the little ole crockpot... or the BIG OLE CROCKPOT.... depending on which size you may be in possession of in your kitchen. 

Cookin'with Little Ole MeKiss~

VEGAN STYLE SOUTHERN GREENS DE'LISH

VeganStyleSouthernGreensDELISHbyLilOLEme_800x465_.jpg

One package of Gardein classic meatless vegan meatballs

2 cups of white rice-Minute Rice

2 cups of water

1 can-27 oz of seasoned southern style mixed greens-Glory brand

You can season to your liking with a little mild or go a little WILD with the following...

Kikkoman Stir Fry & Sweet and Sour Sauce

Black Pepper

Sriracha HOT Chili Sauce

If you're using the Crock-Pot we all know everything eventually cooks together in a slow... simmering... manner. Cook meatless meatballs on high in Crock-Pot and crumble with fork while stirring in 2 cups of white rice and two cups of water.

You can then add your can of mixed southern-style greens, pepper and Kikkoman sauces.

Cook on high for 20 minutes. 

Turn down to a warm simmer while adding your Sriracha HOT Chili Sauce to your liking. Remember if you're going for mild... a little goes a long way. If you're going for WILD... a lot goes a heck of a long way! Hahahaha!

Once everything has been stirred then set your Crockpot on warm to simmer for 10 additional minutes.

Now turn off the Crock-Pot and get yourself a little taste of the good ole HEALTHY stuff! This dish is high in protein, low in calories and packed full of flavor!

VeganStyleSouthernGreensDELISH1_800x492_.jpg

VEGAN STYLE SOUTHERN GREEN DE'LISH

Recipe by... Little Ole MeKiss~


 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: July 5, 2018 4:57 AM EDT
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April 2, 2018
When All Else Fails...
Mood:  chillin'
Now Playing: Day 3008-Chapter 3... Happiness~My Silver Lining

 

When all else fails...

We always have our epic Easter photos and videos to fall back on with plenty of laughter and a whole lotta smiles! Hahahahaha!

Today's meeting to go over last weeks test results with my Critical Care specialists... no laughter, zero smiles.

We always walk into each appointment with zero expectations. I guess what we also need to go into each appointment with is expecting more bad news.

I am in the right hands of two amazing specialists... yet they still can not offer me much more hope as far as treatment drugs that will keep me stable. Today's meeting brought with it more test results and more bad news.

I am in the right hands of two amazing specialists... yet the next hands seem to be nothing of this world.

At the end of the day... there are always far better, happier moments of memorable~bliss to fall back on.



Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: July 5, 2018 4:27 AM EDT
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April 1, 2018
HAPPY~HOPPY~EASTER
Mood:  happy
Now Playing: Day 3007-Chapter 3... Happiness~My Silver Lining

 

I must admit... this Easter is most definitely one to remember!

20180401_222931_resized.jpg

What we didn't remember is that we do not have our dining room set because it is back across state lines in storage. I asked Eric to bring one chair back home the other day when he went to retrieve storage totes filled with Easter decorations and other personal belongings. Since a few of his friends that offered to help move a few large items were out of town for the Easter holiday he could not pick up our dining room set. We have been so scatterbrained lately that we didn't even realize the absent table and chairs for Easter. Ironically.... it didn't dawn on us until early this morning. Hahahahaha!

20180401_202452_resized_1.jpgThey say it isn't what you got... but what you do with what you got that really counts!

With no table and only one chair... I was still determined as ever to make this an Easter to remember! The ultimate Easter to chalk up for the books!

And of course... a once-in-a-lifetime moment... a once-in-a-lifetime Easter... a once-in-a-lifetime holiday recreation of my own version of what I would like to call Five Star VIP Easter brunch lunch seating for two! Hehehehehehe! 

20180401_222914_resized.jpgThere is no need to get into too much further detail.

Another moment... another day... another reason to smile and share more than a few chuckles while creating memories that will last for a lifetime.

We had the best Easter that we can ever remember and yet we never laughed so loud making do with what we got and what we got is more than enough to get us by... and quite a few laughs to boot! 

HAPPY~HOPPY~EASTER

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Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: July 5, 2018 4:28 AM EDT
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March 31, 2018
Glorious~
Mood:  hug me
Now Playing: Day 3006-Chapter 3... Happiness~My Silver Lining

 

There are times in our life when we find ourselves struggling to find the right words... trying to make sense out of something that seems so senseless... yet so unfair.

My Critical Care specialists received another report from one of many tests that were performed this week. We are fortunate to have the Head of Radiology be the one reading each and every single test very carefully over this holiday weekend so my specialists can quickly figure out why home treatments are not working for me. The treatments will work for a few days... then I am once again left struggling to catch my breath on some of the most simplest tasks. I have been a super neat freak my entire life. Some may even call my excessive way of making sure everything stays super clean and spotless as an OCD clean freak... hehehehehehe! I am known to leave no dirt behind and even enjoy vacuuming on a daily basis. I like my home neat, clean and very tidy! That pretty much goes for all of my belongings as well making sure that our fur children are beyond taken care of and always well groomed.

Lately... even doing the most simplest of tasks has left me feeling winded.

We still have a few other reports to come back from the Head of Radiology... but were advised that everything will be available to my specialists no later than tomorrow evening... Easter. I am scheduled to sit down in person with my Critical Care specialists next week, Monday morning. This morning one of the long awaited nuclear scan reports of my lungs came back with further news that isn't what anyone could had anticipated. Sometimes... finding out new news on an ever declining body that is failing me seems as if this is someone else's body... not mine.

Believing that the largest ovarian tumor would surely one day be my ultimate demise... only to then come to the realization of something far more aggressive and far more scarier has me scrambling to attempt some sort of control with the end of my journey. I fear the worst come early Monday morning with my specialists... yet... I am not alone. Eric is growing beyond fearful as one report after another is slowly coming back with more bad news than one person can handle in a lifetime.

When I sit here while Eric is at work and really let reality hit me square in the face. The fear... the fear is real... yet somehow through this medical journey I lost the control of stopping what is far greater than I could ever battle.

Tomorrow is Easter and to most folks that means large family gatherings, big elaborate dinners and even bigger Easter egg hunts and bright colorful candy filled baskets. But for us... this year will be our last Easter to celebrate as a family. That sentence is the hardest sentence to type whether alone to accept. Somehow through such a dark time in our lives, we still find the strength and will to carry on because sometimes finding a way to carry on is the best one can do with a grim reality.

As we shake our heads in disbelief. We are now questioning everything. What is really the point in one final test that is scheduled for later next week? Will there be any further treatment options or will I have to greatly suffer through the rest of my journey? What about current medical expenses and future medical costs... and then sitting down Monday morning with my specialists to find out the prognosis due to my lungs now being greatly affected. Through it all and then some... we must still find a way to carry on with as much laughter that life will allow us and everyday reasons to still smile.

You know... this song pretty much sums up the last few years of my journey as I sit here and wipe away my tears... telling myself... you fought one hell of a battle! Don't cry... be proud!

VERY PROUD!

Glorious (Macklemore)

You know I'm back like I never left (I never left)
Another sprint, another step (another step)
Another day, another breath (another breath)
Been chasing dreams, but I never slept (I never slept)

I got a new attitude and a lease on life
And some peace of mind
Seek and I find I can sleep when I die
Wanna piece of the pie, grab the keys to the ride
And sht I'm straight
I'm on my wave, I'm on my wave
Get out my wake, I'm running late, what can I say?
I heard you die twice, once when they bury you in the grave
And the second time is the last time that somebody mentions your name
So when I leave here on this earth, did I take more than I gave?
Did I look out for the people or did I do it all for fame?
Legend, it's exodus searching for euphoria
Trudging through the mud to find the present, no ignoring us
Got 20,000 deep off in the street like we some warriors
My mama told me never bow your head, woo!

I feel glorious, glorious
Got a chance to start again
I was born for this, born for this
It's who I am, how could I forget?
I made it through the darkest part of the night
And now I see the sunrise
Now I feel glorious, glorious
I feel glorious, glorious


Posted by GastroparesisAwarenessCampaignOrg. at 11:45 PM EDT
Updated: July 5, 2018 4:29 AM EDT
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March 29, 2018
A Great Day To Just...
Mood:  d'oh
Now Playing: Day 3004-Chapter 3... Happiness~My Silver Lining

 

Today is the perfect day to just sleep it all away....

 20180307_132733_resized.jpg

Today is also the third day in a row of non-stop rain here in our little Lazy River Town. It feels like just yesterday that the final massive cleanup due to all the flooding was finally complete. Yet here we are once again dealing with far too much rain. On the flip side... at least all of this rain will help wash away any pollutants from the river flooding. What's that old saying again?

"April showers bring May flowers."

 There's just a few days left for the month of March before we truly get into the rainy season of spring. Uggggg!

20180329_203652.jpgThis afternoon at least I was able to turn in my testing equipment at the hospital for my heart and lungs. The first report of many tests that have been performed this week didn't serve me so well. In fact... one could have never predicted such a fatal blow... another blow with regards to my health. Myself and Eric are still trying to wrap our brains around another huge slap in my face when it comes to my declining health. I was supposed to see my Critical Care specialists later this afternoon. However there are still nuclear test reports pending on my lungs that have yet to come back from radiology. I have a really bad gut feeling that I will be expecting more not-so-pleasant news within the next 24 to 48 hours. 

Somehow we still have to keep going... still keep living... still keep smiling and finding a reason for laughter each and every day. No one said life would be easy. If you ask me... that no one had not a clue about life.


 


Posted by GastroparesisAwarenessCampaignOrg. at 9:26 PM EDT
Updated: July 5, 2018 4:31 AM EDT
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March 28, 2018
NEW PERSPECTIVES!
Mood:  lucky
Now Playing: Day 3003-Chapter 3... Happiness~My Silver Lining

 

One year ago today... I had once again signed on that dotted line... on the path of ongoing experimental treatments. Bravely making the decision to continue on each day as it came. 

One year later... I'm so grateful. Not just for my life, but for NEW PERSPECTIVES.

My best advice for those of you who are now going through cancer or any other painful medical nightmare... start building and creating a "happy place." Whatever and wherever it may be... but don't do it later. Do it now.

You know the reason for this simple... but ever-so-grateful advice that was once given to me?

Because one day when the dust finally begins to settle... that little peaceful place that makes you so very happy, that you created when you were going through hard times will manifest itself. That happy place doesn't have to be perfect by any means. But it will be YOUR place.

We all owe it to ourselves to be happy, even when the road before you appears to never end and you feel as if you will never see the light at the end of the tunnel. You will still prevail. You will one day arrive basking in that ever beaming bright light. You will make it through and be able to truly appreciate that place that you created on your very own!

Your "happy place."

YOU my dear friends are STRONGER than you know.

20180327_021248_resized.jpg 


Posted by GastroparesisAwarenessCampaignOrg. at 11:27 PM EDT
Updated: July 5, 2018 4:31 AM EDT
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March 27, 2018
Here We Go~
Mood:  chillin'
Now Playing: Day 3002-Chapter 3... Happiness~My Silver Lining

 

It's taken more than a few days... waiting for the largest ovarian tumor to reposition itself off of my spine in order to finish off a long series of further testing for my Critical Care specialists. 

These tests should have happened last week after having to reschedule 3 days in a row because I could not lay down on the testing table equipment long enough to even begin the tests whether alone finishing the tests.... one after another. My case is very unique due to the fact that the largest tumor is like a mere ping pong ball glued together and constantly being moved around by surrounding organs which makes a lot of testing very tricky and sometimes almost impossible. 

But this morning...  we were finally able to finish a long series of extensive tests minus one that I wasn't able to complete. But four out of five tests that were finally able to be performed this morning sure beats nothing at all. We'll take it!  



Posted by GastroparesisAwarenessCampaignOrg. at 11:34 PM EDT
Updated: July 5, 2018 4:33 AM EDT
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March 26, 2018
The Legend Of The White Squirrel'
Mood:  special
Now Playing: Day 3001-Chapter 3... Happiness~My Silver Lining

 

Here we are folks!

The start of another mystical, magical and quite wonderful week! 

Spring... Spring is definitely now in the air as all of the beautiful white snow has quickly melted away. Sure going to miss all of that snow and the peacefulness that the winter season brings. Now it's on to the hustle and bustle of the spring and summer seasons when the world is wide awake and so are the sounds of chainsaws, lawn mowers, leaf blowers and other various loud equipment... sigh. Eric will be one of those who will soon enough be firing up the chainsaw as we make our way towards the remaining smaller projects... Outdoors. 

As I begin evolving with the sun... evolving with the moon and evolving with this new season. I am still doing my best to work with the most recent changes with my health. I'm not a hundred percent... but I'm better than I was before being rushed to the hospital almost 4 weeks ago. Unfortunately... I will have to remain in the care of my Critical Care Specialists as they continue doing their very best to keep me stable. That also includes another round of tests at the hospital tomorrow morning. I may not have the energy like I used to just a year ago to this very day. But I remain thankful and beyond blessed for the chance to continue enjoying all the little things in life that bring me so much happiness... the unconditional love from my little family.

For me... their love... is enough. It keeps me going. It gets me through my darkest hours.   

The MYSTICAL, MAGICAL WHITE SQUIRREL`

Hehehehehehe! 



Posted by GastroparesisAwarenessCampaignOrg. at 10:30 PM EDT
Updated: July 5, 2018 4:34 AM EDT
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