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The Road Before & After Surgery
November 10, 2017
A Special Kind Of Birth~Day :)
Mood:  special
Now Playing: Day 2866-Next GP Chapter... Turning Lemons Into Lemonade :)

 

What a difference a year can make in ones life.

Today is a very special day. A very special birth~day kind of day!

Who I miss the most...my Littleblue.

I honestly miss all of my beloved fur children that got called back home to heaven far too soon. I miss celebrating a very special day with my very special beloved fur angels. All the tail waggins, meows and howls of excitement while opening my gifts and cutting a slice of birthday cake. The little kisses on my cheek.

This year feels different trying to celebrate my actual birth date. Not having my beloved fur children surrounding me feels...empty.

I always told Eric, that maybe they wanted to reach the beautiful golden gate and such peace that heaven will bring, before me. I can only hope and pray, that when my time comes being called back home to heaven. That all of my beloved fur angels will be standing in front of that big golden gate. Waiting for their mommy.

What a beautiful day that will be!

This evening, Eric lit a few candles on a slice of my favorite, Tiramisu cake. As we listened to some favorite holiday music classics, reflecting on far happier memories. Far happier days. 

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EST
Updated: November 11, 2017 10:14 AM EST
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November 9, 2017
Cleveland Clinic...Here We Come! Or...Not.
Mood:  d'oh
Now Playing: Day 2865-Next GP Chapter... Turning Lemons Into Lemonade :)

 

This was totally me this  morning!

Hahahahaha!

Actually...both of us.

Nothing like ringing in a new year, birth year, with a little bit of shocking news from my doctor this morning. For crying out loud! Here we go again and again and again and again.

I can't remember what it's like to actually work for a living. If being sick was a job. I clearly would be holding a top CEO title! No joke. I miss working. I never would had imagined having to be on permanent disability for most likely, the remainder of my lifetime. Knowing that it took me a little over 3 years to win a temporary work permit. Then to once again, deal with more complications, escalating issues with my health. In which, I still have yet to complete the first of two possible online business ventures with my temporary work permit. Well...it's down right frustrating. I could use other choice words on my mind, but we will keep this blog 'G' rated. BAH!

Not only has it been one hell of a morning. An even worse afternoon into the evening hours dealing with nagging pain from sitting in the car traveling across state. Far too many hours for this gals liking when not taking her pain medication. Yep, I also forgot to bring that with us this morning. Pfffff!

Today...just wasn't my day. Our day.

I will quote the words from one of my many specialists whom have all wrote their own special notes within my online medical chart. Another few specialist notes that were read to us today.

"Please refer patient to Cleveland Clinic for further advanced care."

"Patient needs to be referred to specialty cancer care."

We have been down this road a few times over the years. My specialists have come to their own crossroads where even my complications are becoming far too much for them to manage. What used to work, is no longer working. Another possible option for some sort of experimental treatment. I assume...if one wants to wander back down that experimental road. Really, in my mind, while being read one specialist letter after another. I have already given up this long, windy road of going no where.

Really, it's not all about giving up. For me, it's about the quality of my good days. Not the quantity of how many days I am able to enjoy through out the week. Driving back and forth up north to the Cleveland Clinic already sounds exhausting. Yet, my team of specialists are very adamant about sending me up north as my long, lengthy online medical chart makes it way to the Cleveland Clinic now as we speak. Sometimes, it's best to just bite your tongue before you speak. I don't want to let my amazing team of specialists down, however, I am a realistic gal. Realistic is when you come to a point within your battle, realizing that things are not going to get any better. So why not enjoy the good days, to the fullest, while they last. AMEN.

Yea, it wasn't a very good appointment. Not like they ever are lately. But I guess even today brings with it, another silver lining. I always have Cleveland Clinic to fall back on. Maybe not in this lifetime. But it's nice to know that my specialists still have hope and remain dedicated in my care to the very best of their ability.

 

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EST
Updated: November 10, 2017 12:36 PM EST
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November 8, 2017
One Word...TIRED.
Mood:  lazy
Now Playing: Day 2864-Next GP Chapter... Turning Lemons Into Lemonade :)

 

One BEST enjoy this beautiful fall weather before Mother Nature literally throws us an early taste of winter over this upcoming weekend!

BRRRRR~

Thanks to Dr. T and his most marvelous hidden talent!

This totally describes how I view the fall season...LOVE  IT!

However, today was all about good ole sleep. Much needed rest for my body! We plan on still having our garage sale over this upcoming weekend. Even with the brisk winter-like weather forecasted...our sale must go on...indoors! Hehehehehe! This means moving everything from the upstairs garage to the basement. Looks like not only will Eric need coffee, but as well an extra protein shake! HA!

It's been an official year, October 24th, since moving into our home here in the country. More like...on the wooded country hillside. We have accumulated an awful lot over the years. More so on my end, over the past decade and then some! Less to me...is truly more in order to enjoy life to the fullest! Amen.

Tomorrow marks another appointment with my specialist. Then next week it's off to see a new specialist here in Indiana. Sometimes, it's all about location-location-location. Not having to be in the car, driving over bumps that only make the tumor pain worse. I will still remain part of my team of specialists care back in Ohio. However, having another doctor to share their expertise with my unique medical case can never hurt matters. Possibly, even helping matters.

Only time will tell. It's a watch, wait and see.

Until tomorrowzzzzz


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EST
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November 7, 2017
A Little List Of Life Reminders :)
Mood:  bright
Now Playing: Day 2863-Next GP Chapter... Turning Lemons Into Lemonade :)

 

We all could use a little pick-me-up from time to time!

A little list of reminders on why you should laugh, smile and of course...BE  HAPPY!

#10. Even when you felt your absolute worst over the past week. You did your best.

#9. Being a little weird is just a natural side effect of being totally awesome!

#8. People around you right now, at this very second, might have on pants and underwear. However, that doesn't mean they are better than you.

#7. If it doesn't open. It's not your door.

#6. Standing in your truth...is like having a super festive birthday party! It doesn't matter if nobody shows up because you'll enjoy that festive glitter for weeks! If not years from now!

#5. Be you, just the way you are, in the beautiful way only you know how.

#4. If you spent 3 seconds today truly appreciating an image, smell or song. You're already ahead!

#3. It's more than okay to take the time to slow down, reflect, and appreciate what you have. Sometimes it's okay if the only thing you're doing is breathing.

#2. What you do today is important because you are exchanging a day of your life for it.

#1. This moment is sacred.

I kid you not. Right now is the only moment you have. You are not guaranteed a tomorrow. Your past is just memories now. You are alive. You are a part of this universe.

There is not one moment more sacred than this very moment.  The here, now.

Life IS a present...a remarkable gift!


Posted by GastroparesisAwarenessCampaignOrg. at 11:14 PM EST
Updated: November 9, 2017 10:04 PM EST
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November 6, 2017
Accepting That Sometimes...Things Are What They Are.
Mood:  chillin'
Now Playing: Day 2862-Next GP Chapter... Turning Lemons Into Lemonade :)

 

It's going to be a very long week.

Another early Monday morning start to our very long week.

When I take the time to look a bit back on my life over the years. In which, I try not to do very often. It's very disturbing to come to the reality of just how much my body has endured. Medically speaking. It's even far more disturbing to come to grips with another surgery, another reality that has no chance of being postponed. Not in the very sense when it comes to another infection deep within the bone.

Sigh...or really do I sigh this time? Surely, I have somehow gotten used to this normalcy. My way of living. I guess.

I had predicted this mornings turn of events. More like...another series of the same ole, same ole, events. Medically speaking of course, because so far I have yet to even finish both online businesses. Building two separate websites that once again, have to be postponed, delayed due to medical reasons. Of course, why it certainly always seems to go that way. Am I feeling a bit annoyed, yet sarcastic?.

You bet!

As with anyone who has endured a round or two of chemotherapy or radiation. Ones immune system will always be compromised. Infections are never taken lightly. Infections and the source of infections must be handled careful and urgently. Seems I might not have successfully found myself with a surgical implanted device to help regulate lack of hormones. I may not even found myself at least receiving a surgically implanted port to help minimize lack of absorption with medication, pill form, that is now a substitute for what could not be implanted surgically. But it seems today was just another day when another infection trumped everything.

I may have anticipated, literally expecting this mornings news. However, Eric was the least to expect seeing me go under the knife, one more time, dealing with another infection deep within the bone. It isn't about having a choice in the matter. Surgically, it must be done. As for now, we are looking at another Thanksgiving recovering at home. What a great way to ring in the upcoming holidays! Said...no one...ever. But such as life, you just learn to roll with the punches. What one can no longer control. After all, "It really is, what it is."

So...after two appointments and running far too many errands in order to catch up with life. We made a pit-stop in order for me to stock up on the good stuff! Another round of preparing my body for a long road to recovery. Another round or two of antibiotics until the nurse calls me with my scheduled day of surgery. Doing whatever it takes to prepare myself physically, but also emotionally. It's stressful. Lately, things are getting to be a bit depressing. As most 'normal' human beings. Although...what is really 'normal' anyways. I do the best I can, with what I got.

Tis not a good day today, but there is always...tomorrow.

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EST
Updated: November 7, 2017 10:11 PM EST
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November 5, 2017
What Really Is 'Normal' Anyways.?
Mood:  d'oh
Now Playing: Day 2861-Next GP Chapter... Turning Lemons Into Lemonade :)

 

This unseasonably warm, humid weather is enough to literally zap the energy out of a gal!

Okay, maybe even a kitty named, Beary. Hehehehehehe! Nah...she's just used to her lazy Sundays...

It was a warm, breezy day here in the country. No winter attired needed. Just throw on a t-shirt, shorts, flip-flops and your ready to go! Crazy isn't it?! I believe our temperature actually was warmer here in the country than down south in Florida. Almost 80 degrees and still in the upper 70's by late this afternoon.

What happened to the predicted 'normal' fall and winter weather for this year? I mean really...what is 'normal' anyways?. There isn't a normal. However, it was pretty nice being able to enjoy a few walks through out the day along the river. No coat needed. Just us and our fur children enjoying the warm weather and lots of sun! Ahhhh...relaxing!

With the holidays quickly upon us. What we have yet to do is have a garage sale of sorts. We were suppose to have our garage sale last month, but life got in the way. Instead of an actual garage sale. It appears that it will end up being an indoor basement sale. HA! We have a lot of storage totes filled with excess clutter that need to be moved in order to get the rest of our stuff out of storage and into our basement. Literally, from one basement to another before our final move come early spring, 2018. We aren't so sure where all this extra physical energy will be coming from...but the sale must go on within the next few weeks.

Move over ice tea! It's time to bring on the coffee for Eric, and lots of it! Hehehehehehehe!

With such a beautiful, warm, last sneak peek of summer day here in the country. We decided to end our evening with a short drive farther up on the hillside. A picture perfect view of the country! With an even more beautiful sunset!

A perfect ending to a very busy week. A most perfect kind of Sunday heavenly treat~


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
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November 4, 2017
Fall Fun & Football Rivalry!
Mood:  cheeky
Now Playing: Day 2860-Next GP Chapter... Turning Lemons Into Lemonade :)

 

Look at these amazing fall colors!

All sorts of vibrant red, orange and yellow leaves on the trees! The fall season makes this gal SUPER HAPPY!

Love~Love~LOVE

Thankful, is knowing that I have one heck of an amazing team of doctors who quickly found the source of my infection. The latest infection that once again, put surgical procedures on hold so my compromised immune system could receive a bit of assistance. Not only did my doctors quickly find out the source of my infection. But were as well able to quickly work me into their Monday morning schedule for next week.

Anymore with my health. I tend to just roll with the punches. Going where my doctors need me for the time being. Sure, I would like to just call it quits. However, realistically it just isn't possible when I don't even have a second to blink before getting hit again with another complication. Defying the odds... is an understatement.

What I refuse to give up on are days like today. A good day that includes a few good moments. Lots of smiles, fun and plenty of laughter among husband and wife. Even a little football rivalry of sorts!

Eric... still stuck across state lines, mentally believing that the Bungals...Bengals might take home a Super Bowl ring this year. You know, I respect that positive thinking or something like that... ha!

Then of course... You have little ole MUAH! A huge STEELERS fan that isn't shy about poking a little fun at his Cincinnati Bungals along the way. Hehehehehehe! Why, lookie here...guess what I found in one of the storage totes that we brought home yesterday...

STEELERS all the WAY!

Notice Eric's facial expression in the background. A mere disgust of me wearing my infamous Steeler's sweatshirt that I found. Hahahahaha! PRICELESS!

Today, we not only caught up on a few house-flipping projects. But most importantly, we got to spend some time outdoors taking in all the beautiful sights and sounds of fall. Regardless of what life may throw at us. We still always make sure to find time for plenty of smiles and lots of laughter along the way!

Eric's Cincinnati Bungals. I mean, Bengals.

Hehehehehehe!

 Muah's...STEELERS all day!

YAYYYYYYY!

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: November 5, 2017 5:47 AM EDT
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November 3, 2017
Boobear Birthday Ninja STRIKES!
Mood:  cheeky
Now Playing: Day 2859-Next GP Chapter... Turning Lemons Into Lemonade :)

 

You know the ole saying... Life is far too short.

So why not have a little bit of fun!

Today it seems that the Boobear  Birthday Ninja decided to strike when least expected!

BOO! Hehehehehehe!

Sure...I know what most of you are thinking. This is about to get f-u-n-n-y! You know what? You are absolutely, 100 million percent, spot-on, RIGHT!

After last month's ridiculous shenanigans, family claiming that Eric and his coworker, Deputy Sheriff's for the county, plotted a Boobear birthday Ninja move by literally ruining a family members birthday. Of all reasons, in order to move storage totes out of a grandparents basement, given prior permission by the grandparent. Ridiculousness filed in Butler County, Ohio court. Now, public record. Denied and dismissed by the judge. Because of course, it's not a life threatening event by any means when one is attempting to pick up moving totes out of a grandparents basement with a reserved U-Haul.

BAH! Hehehehehehe!  Downright silly, I tell ya!

Honestly, I believe everyone will be laughing about this for a very long time. We are just not-so-sure which part of the story/claim will be chuckled over time and time again?. A family member claiming that the Ninja tote movers were ruining their birthday by picking up moving totes, in which, they didn't even ring the doorbell due to not being able to locate the grandparents home after a new fence was installed. Or...claiming that their birthday was also ruined by a reserved U-Haul?. HA! Literally, either way you look at it...downright silly! To file a court document claiming partly your life was in immediate danger from moving totes, two folks, Deputy Sheriff's, trying to get the moving totes and one reserved U-Haul. It still has many shaking their heads. It has me still shaking my head and remembering my Grandmothers quote about fools. Foolish folks. "You both are better off without them."

The dismissed, denied by the judge, court filings by family. Is clearly the reason why this evening, I made sure that this gal went along to retrieve the first batch of moving totes from the grandparents basement. Of course...making sure it was done so with no one present to cause another dramatic uproar over absolutely...nothing.

I like to call this evening's tote moving adventure:

Boobear Birthday Ninja STRIKES!

While everyone is out, about or at Bingo.

Hehehehehehehe! Literally, the depths I have to go through in order to keep the peace back across the state line, Ohio. Keeping peace in the city.

<Literally smiling and shaking my head as I continue typing

The Boobear Birthday Ninja was so smooth...that literally nothing went noticed as far as 11 totes, 1 large Xmas tree, 3 small Xmas trees and one huge green screen. All successfully moved from the basement to both parked vehicles waiting to make a Ninja escape without notice. All this...in order to be the bigger adults and keep the peace among family members. AMEN.

I was on the phone the other day with Eric's father. A long conversation about all of the dysfunction that has been going on among both large families. Really...as I told him...it's a sad shame. But I also told his father, that one day, there will be something that happens. An event in ones life. That literally puts life into a far bigger perspective. Silly things such as the Boobear and the gang story and other family members overdramatizing such pettiness, will no longer bother you anymore. You will actually be able to finally find humor in such a highly dynamic, dysfunction of sorts. Issues among both families that really is a crying shame. But with life changing events, such as what myself and Eric have went through over the past few weeks. You learn that even with highly dysfunctional family issues, those that have continued on for years. Some, even for almost a decade. You learn not to let things with family bother you anymore. You come to a point where you can finally laugh, shake your head, and let it roll off your shoulder. Doing so, with a smile. You learn that life is far too short, to ever let anything or anyone make you unhappy.

Life is far too short to waste another minute, another moment, another second. Even if that time means being wasted by long-winded issues among family.

It was the second of long conversations with Eric's father. In which, a light was shed upon such a very unfortunate situation. Families torn apart, two, over such pettiness. Egos far too large to just sit down, work issues out and offer a sincere apology. Too many Chiefs...not enough Indians. That's how I look at the entire situation.

But you know what I have learned the most?

Life goes on. Happiness is solely yours for the taking! Literally, absolutely, 100 million percent. It IS yours for the taking!

As for this evening's Boobear Birthday Ninja attempt at the first round of moving totes? A most HUGE success!

Isn't it sad. When those who should be there for you through thick and thin. End up being the ones who will let you down and hurt you the most. Yet...preach about not having the time to be there for each other, as family members. Yet, have all the time in the world abusing the court system. See...there are many lessons learned among both families. The greatest lesson of all is that when people claim they don't have the time for you. In turn...don't give back your valuable time for the taking. People, even family, that love you unconditionally. Will go great lengths in order to spent time with you, quality time, not petty time. Petty time is time wasted. I respect and deeply value my time. I refuse to have my valuable time wasted.

These Boobear Birthday Ninja's have no further time to waste. Life is far too short.

Be HAPPY! Do YOU!

Never look back at closed doors. God keeps them closed for good reason! This, I know.

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: November 5, 2017 4:36 AM EDT
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November 2, 2017
Humbled.
Mood:  bright
Now Playing: Day 2858-Next GP Chapter... Turning Lemons Into Lemonade :)

 

Ahhhh...the very first signs of fall here in the country...

Bahhhh...the very first signs of a far too early wake up call here in the country...

Talking about one mix-up of a day!

We arrived 10 minutes early at the hospital, signed in with registration and was taken back to the same-day surgical area. What we weren't ready for was a HUGE mix-up, more so, a phone call and voicemail message that I never received yesterday. A message from my oncologist's assistance in order to let us know that my blood work came back with a few concerns that need to be addressed first before proceeding with my port. I honestly never received the phone call nor voicemail. That is because they left the voicemail on Eric's phone number. His prior phone number before having it changed after moving to Indiana. Oh yes...someone got the message...it just wasn't me.

I am still dealing with immunity issues, a compromised immune system. What my doctors will not do is any type of surgical procedure when signs of infection surface. It took my specialists almost a month to finally be able to proceed ahead with the last surgical procedure due to my inability to regulate a safe body temperature. That was also due to problems with my immune system, in which, a pump that was going to be able to deliver important hormones that my body can no longer make on it's own, was permanently canceled. Instead, we find out four months later, after my last rescan why I am having one complication after another. Internally, things rapidly progressing is not only concerning, but if I allow it...could be beyond depressing. Days like today, most certainly put life into perspective.

The gift of life, should be respected.

So...instead of being mentally prepared for my port procedure. We were whisked away to the infusion center for another treatment to help boost my immune system. This isn't the first nor do I expect it to be the last. For anyone who has endured infusion treatments. You can completely respect the time involved which starts with first getting your vitals taken, then off to find your assigned infusion chair. Time is truly of the essence with having any type of infusion due to time sensitive, delivered medication from the hospital pharmacist. The person responsible for making sure that the medication is sent up to the infusion staff after the patient has been registered and waiting in their assigned infusion chair. The infusion center that we typically go to inside the hospital reminds me of what one would see up in heaven. Bright white walls, crystal clear and very bright overhead lighting, soft white infusion chair sheets and big fluffy white blankets and pillows to keep you warm and comfy during your infusion treatment. All of the infusion center staff wear white hospital uniforms with white medical clogs. Everything...is literally the whitest shade of white humanly possible!

I believe that those who decide upon a career, taking care of patients with serious medical, end of life conditions, have some of the biggest hearts in the medical profession. We have yet to ever see a staff member inside the infusion treatment center walk around with a frown on their face. Even right down to the volunteer staff who come around making sure you are comfortable during your infusion, along with loved ones that sit along side the patient. Offering anything from magazines, beverages, snacks and even a mini size version of chess to help bide time while waiting for the infusion treatment to end. Every single infusion center staff member is beyond amazing! Angelic...that's a good word to describe their level of compassion and care to each and every patient.

Of course, there are the stories that are pretty hard not to overhear since all infusion patients chairs are out in the open. This as we were told makes it possible in order to help patients who might encounter a reaction to their treatment medication. Within the very first minute of my nurse helping me to get comfortable in my chair. A young woman in her mid 20's started having one of those serious reactions. Her mom gently held her hand while the nurse helped talk her through the reaction she was having from her treatment. Watching her face go from a normal skin tone color, to a very pale bluish-gray color, was quite scary. Of course, since she could see me. I instantly put on my warrior face! I had to set an example, more so, a calmness for her. Before the nurse began my treatment. I asked Eric to step out to the hallway. He doesn't do well with needles and the young ladies response to her treatment already had him frightfully nervous. Every single patient with an assigned chair has a story. The gentleman who sat next to us enduring his weekly infusion who sits patiently waiting for his medication to be delivered by the hospital pharmacy. One brave soul who endures weekly treatments to help boost his compromised immune system due to a kidney transplant, number two, that his body sadly rejected last year during Christmas. Another couple, an elderly gentleman who is battling stage 4 lung cancer. A supportive hand from his wife who patiently sat by his side. Yet, tells his assigned infusion center nurse that he feels a bit better and would rather not continue his final treatments due to time spent away from his family. Infusions that take between 3-4 hours which to him, equals time away from his adult children and grandchildren. Then there are the strongest of souls who are bravely enduring one final treatment option in hopes of biding just a bit more time. Experimental chemotherapy drugs that literally cost $15,000+ per infusion. This is actually around the normal cost of most treatment drugs. This is also why the drug manufacturers must have your verbal consent on the phone before they will ship the drug to the hospital pharmacy. I was told that same information last week, by the pharmaceutical company who needed my permission before proceeding with my own last option experimental chemotherapy drug treatment. Yet...my decision to not proceed ahead with one final option was not as brave as those souls who were seated in other infusion chairs. For those patients and those who sit in a chair next to the patient. Those who are there to support their family member, loved one and friend. My heart and deepest respect go out to each and every one of you. It takes a very brave and courageous human being to hold the hand of those who fight to live to see another day. Those same patients who go through the unimaginable, literally, the unthinkable while still being able to hold a smile on their face.

There really are no words to describe what it is like to sit among those who are the most bravest souls around...looking for hope inside a place where angels really do exist.

 I am forever humbled to be around those who are forever blessed.

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: November 3, 2017 3:39 AM EDT
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November 1, 2017
United GP Walk 2017~SUCCESS! :)
Mood:  special
Now Playing: Day 2857-Next GP Chapter... Turning Lemons Into Lemonade :)

 

THANK YOU FOR MAKING THIS YEAR ANOTHER HUGE SUCCESS RAISING INTERNATIONAL GASTROPARESIS AWARENESS!

 

In Loving Memory~Elia Borreo

 Our dear fellow GP friend and Angel was called to Heaven on September 5th, 2013 after a long and courageous battle. Elia was truly an inspiration to millions around the world and her legacy will live on. You will forever be loved and dearly missed.
 
*Don't forget to send your "WALK-RUN-RIDE" event photos to: gpawarenessfund@yahoo.com
  
RAISING GASTROPARESIS AWARENESS ONE PERSON AT A TIME
 


 
 
 

Posted by GastroparesisAwarenessCampaignOrg. at 3:52 AM EDT
Updated: November 1, 2017 3:57 AM EDT
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