Mood:  d'oh

Boy! Do we have a LOT to do before May 1st! What we don't have time for? Set-backs.  Delays.

Crazy enough, I am starting to get used to all of these early morning wake-up calls. That IS crazy! Especially, coming from someone who used to be such a night owl, but not anymore. There is so much on our already full plate and not a whole lot of time left. I don't need any set-backs nor do we need any huge delays. Time to get things straight with my health!

This current chapter.

After far too much IV medication. I was scheduled for another outpatient round again this morning due to lack of still being able to get the vomiting under control. My blood work didn't help matters. Especially when my immune system should be making even a teeny, tiny sort of some type of change in the right direction. Instead... It took another nose-dive. In the wrong direction. Another early morning assisted walk through the hospital halls in hopes of finding answers instead of continuing to spin the ole wheels. This morning my specialists made their decision against any type of temporary tube due to obvious factors with lack of an immune system and the far too high risk of developing an infection that my body would not be able to fight off. Not with the way my blood levels are right now. It's just far too risky. Time to slowly decompress my small intestine a far different way than with the aid of a tube.

It's times like these, that I am beyond GLAD for pushing myself to continue getting out to enjoy life! JOURNEY~

It's other times, when the universe seemed to line up perfectly for us and we were able to once again be one with the ocean or even feeling a whole lot LUCKY out west in Nevada. I don't regret one single moment. I wouldn't dare change one single thing when going against the grain.

Like... Today.

Thanks be to those behind the scenes. Those who continue lending their medical expertise during the times when I have come to a crossroads. After careful review of my labs and other medical reports. Myself and my specialists have come to a decision to discontinue immunotherapy treatments. The reason should be quite obvious for anyone in my unique situation. When your labs come back far worse than just a mere month ago. When your counts have taken another dip in the wrong direction. Much like radiation treatments, although that decision wasn't made by me, it was made for me by my radiologist and oncologists after a maximum fast-track course of treatment failed. There are going to be times when even the best in medical advancements aren't going to work the way they were intended. Sometimes you must take a step back and question if you are helping the situation or hurting the situation. Your health.

When your immune system becomes depleted from oncology treatments and countless infections due to lack of a normal immune system. Even sometimes experimental means of alternate therapy might not be the answer. It could also backfire on you. My goal, same as always, was to seek means of alternative ways to bide myself a better quality of life. Not take away from my good days, but to gain a few more good days. I have come to realize, that same with oncology treatments. I am only hurting my health. Not helping my health. For those very same reasons. Same as with trying other treatments that didn't work for me. I have opted to now stop existing treatments due to changes going the opposite direction with my health.

Maybe, I will always be the 'less' is 'MORE' kind of gal. At this point. I tend to believe so.

With everyone on the same page. The slow decline of treatment medication now begins. I don't expect it to be easy and who knows what this will mean for my overall health. However, I am once again, beyond proud of myself for sticking things out! Even though it didn't work out for me. I do believe that some experimental treatments and means of hopefully biding patients more good days than bad days, still do exist. For some patients they work. For others like myself... All you can do sometimes is give it your best Girl Scout try.

Life goes on... Another page... Turned.

Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT

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Mood:  chillin'

Is it spring or summer in the country?

SUMMER !

Yep, it seems that once again, we won't be having much of a spring. Not as far as when it comes to temperatures that hit past the 80 degree mark today in the country. We have never seen so many bees either! YIKES! Today would had been a perfect day to just take it easy, but instead we had to head back up to the hospital as outpatient so they could load me up with another round of IV medication. At least it was a great opportunity for Eric to catch up on some sleep, sitting up. HA! I am still having a hard time keeping fluids down, but still determined to get past this hurdle. Much sooner than later!

We have only a few weeks left before needing to start our RVing way of life. We also have quite a few pieces of furniture that still needs to be placed for sale online. Even with set-backs, we still must keep UP with the fast pace of life! While I was taking it easy, catching a few zzzzz's and giving my body some rest. Eric was keeping up with text messages and phone calls with regards to items we have listed for sale online. We won't be able to take everything with us this time. That unfortunately even includes storing belongings until we figure out the next step with a new home. Our RV can only hold so much and it already came nicely equipped with everything that we need minus a few odds and ends. There are a few pieces of furniture that I will be keeping, mainly for sentimental reasons. It definitely frustrates me that we have to change our lifestyle once again, but this time due to negligence on the prior owners who sold us such an uninhabitable home by hiding some seriously dangerous foundation issues. I know that anger can only make matters worse, not just with your health, but with your soul. We both refuse to allow the stress and emotions from our newly 5-month old home, that will sit in litigation for up to 2 years, get the best of us. Life is far too short to allow others to get the best of you. I believe in karma and karma can serve up a mighty bad recourse. It might take awhile, but life will soon enough get back to a bit of normalcy.

Until then... We must push full steam ahead!

I am scheduled to see my specialist tomorrow morning in order to find out his decision with the NJ tube. I am still dealing with the pressure pain and doing my best to not sit around for too long of periods of time. Gravity has to be my best friend right now, even though all I want to do is sleep. At least watching Eric in selling action has been entertaining this afternoon into the early evening hours! Heeheeheehee! The biggest highlight so far when it comes to our online buyers just happens to be a part of a far bigger team. A professional fishing team that was actually just on television earlier this morning. How crazy is that! Not too crazy, not for us anyways. Hahahaha! One can only imagine the slow down looks and stares from those who were born and raised in our little, lazy, river town. Those who knew exactly what the colorful vehicle meant with the zombie-like fish and many corporate sponsored logos of the fishing pros. Eric sure learned a few things or two about pro fishing while the gentleman stopped by to pick up an item we had for sale online. I may not know much about professional fishing, but by the looks of things. It looks mighty profitable! Fun too!

Posted by GastroparesisAwarenessCampaignOrg. at 11:10 PM EDT

Updated: April 10, 2017 2:45 AM EDT

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Mood:  chillin'

We had everything planned accordingly for this weekend. With very limited time, we still have a lot left to do before moving onto our next adventure.

Our new way of life... RVing~

Such as with life, things can happen. Things can also happen as they tend to always do, unexpectedly.

I have been doing fairly well with my new treatments in hopes of rebuilding an immune system that unfortunately became quickly depleted after radiation and ongoing infections. Allergy shots are suppose to help counteract the many side effects with treatment, but as I learned today. Nothing is a guarantee.

When I think of allergic reactions. I assume that one would experience a rash, hives or something along that nature. That is how I generally respond to an allergic reaction, but this evening into the early morning hours things were quite different. I am not used to having upper pain, vomiting, seizures, shortness of breathe and overall, feeling out of it happen in such a short amount of time. I also began feeling very toxic. My goal this year was to stay as far away from emergency care as possible. Sure, I still go for treatments, but they are provided as well allergy shots via outpatient. With Littleblue not feeling well and her surgery right around the corner on top of needing to finish everything with our move. The last thing I need is any type of set-back. Then again, one should already be used to expecting the unexpected.

A little set-back...

Thanks to those who once again, picked up their phones. What I needed was someone to just listen and help direct me in what they felt I should do since I was anything, but wanting to seek emergency care. This is the second time I have been handed a set-back with serious complications, yet I still remain determined to fight without seeking medical help. Let's just say that vomiting every 10 minutes got the best of me. I also started to quickly become dehydrated and my seizures were not getting any better. Either I continue to fight or I officially give up. I once again, chose the latter. Eric becoming an emotional, nervous wreck also played a part in deciding it was time to head up to the hospital. Littleblue also needs her human mommy to be with her during and after surgery. There are reasons to fight and continue fighting the great fight.

Anyone who has undergone radiation near or below the abdominal area can understand how quickly scar tissue can form. We were told by my oncologists that post-radiation scar tissue can actually be worse than post-surgical scar tissue. I expected it only to be an allergic reaction to one of the treatment drugs I have been taking, but instead there are a few issues going on that has thrown me for another set-back. I refuse to take pain medication, due to not wanting to be someone that gets addicted. The thought alone scares the heck out of me enough that I refuse to take pain medication. I have even backed off a bit from the little magic pill, Marinol, but mainly due it not providing much relief. As things have progressed, even getting relief from Marinol has been limited. Not taking pain medication can cause seizures as my pain tolerance has now become extremely high! The brain is very much in tune when the body is experiencing pain. There is a connection with pain and seizures as we learned a great deal in the hospital today.

I had my first major scan in almost a year due to the emergency room physicians not sure if something else was going on after a second visit since the vomiting only had gotten worse. It seemed we treated one problem, but clearly there was something else they were missing. This tends to be the norm, which is why I dread hospitals. Especially, the emergency room. Sure enough, I am once again dealing with blockage issues. This time with my small intestine. This is first time however, that they wanted to do a NJ tube, but my specialist wants to make that decision and give my body time to see if we will need to still go that route to help decompress things. It took a lot of medication through an IV, but I remain determined to pull another odds in my favor. To me, this is just another small set-back. I will prevail, but it will take a little bit longer this time. I didn't ask about the procedure for the NJ tube. I figure that I will cross that bridge when the time comes. I tend to not allow myself to think too far ahead anymore, because anything is possible. Even when tests might show otherwise.

Life goes on... Tomorrow is another chance. Another beautiful day here in the country...  

Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT

Updated: April 10, 2017 2:46 AM EDT

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Mood:  sad

Lately, Littleblue just hasn't been acting like her happy, chipper and energetic self. A mammary tumor was found 3 months ago after we noticed a very small growth. Our amazing groomer also noticed the same small growth. Unfortunately, the growth quickly began growing larger as Littleblue's fatigue quickly began getting worse. After another round of tests, we were then given the news that our Littleblue has mammary cancer. 

Today we had only anticipated to have an appointment with our prior veterinarian surgeon who performed dental surgery to remove a broken tooth a few years ago. After receiving three different veterinarian opinions, we were then told over the past month that Littleblue's mammary tumor was inoperable due to the size and serious surgical complications. Littleblue has connected respiratory issues which began around the same time that the cancerous growth was found. We were only looking for a better pain medication for Littleblue during today's veterinarian appointment, but sadly were given unfortunate news.

Littleblue's tumor not only continues growing rapidly and is now the size of a golf ball, but the tumor has now placed us in a no-win dilemma due to the blood vessels quickly becoming enlarged. We thought that we had at least some time on our hands, but now we don't have much time, if very little time before the tumor ruptures and becomes instantly fatal. This is a time when we believe that our appointment with our veterinarian surgeon was just meant to be. Of course, surgery scares the bejeepers out of both of us! The risks involved are 50/50 and that doesn't include if and how fast cancer cells can spread after surgery. We also have the sad risk of respiratory complications that can happen during surgery to our beloved Littleblue, but we now have no choice. There is no time left nor any other options. We are fortunate to have a great veterinarian surgeon and a wonderful surgical staff with state of the art medical equipment at their finger tips. This makes us feel a little better in case Littleblue does suffer from a surgical complication, but still the risks are scarily high!

There are times in life, no matter how much you think otherwise, when time is of the essence. We thought we had many months of happiness to share with our beloved Littleblue, but instead we were given the sad news of a very serious prognosis. The tumor rupturing would not only be fatal, but we were told it would be excruciating for Littleblue as the pain would be just as horrible. Surgery is no means a cure, but only hopeful that it will help save Littleblue and give her many more months with her family.

At the same time we were given the news, as we now nervously await for Littleblue's surgery which is set to happen in a little over a week. We read the news about Mishka The Talking Husky who sadly lost her own brave battle with cancer. Miskha was 14 years young and brought so much joy to so many around the world. That includes myself and Eric.

I lost track of how many absolutely adorable videos that I have enjoyed over the years. Times when a little bit of laughter was much needed. A reason to smile. I don't know why, but for some reason the good Lord's need to call us, even our beloved fur children, back home seems far too soon. Mishka and her entire family remain in our thoughts and prayers. What an incredible blessing. To be loved unconditionally by God's angelic animals. Our fur children.

Nobody knows unconditional love better than a dog. They love you at your worst and make your best better. That's why when they leave, they leave an irreplaceable void in your heart. Knowing that Mishka, the husky that made internet the happy escape was no more, was terribly sad.

She was diagnosed with Cancer earlier this year and passed Wednesday.

I can't even count how many hours I've spent watching her videos on YouTube and yearning to meet her someday. But I definitely remember how happy her videos made me, how excitedly I'd spam my friends with links to her videos. To know that her life ended on such a heartbreaking note is just terribly sad.

Hello Everyone,

I'm sad to say that Mishka has passed on. She stayed strong until the end and went peacefully. We will miss her terribly but know in our hearts that it was her time to go. Mishka lived the most wonderful and fabulous life. She was a true celebrity in every sense; appearing on multiple TV Talk Shows, partnered with a movie studio, was featured in Hollywood movies, and even starred in commercials. Our very special girl brought joy and love to people worldwide. We have been truly blessed to have her as part of our family for the last 14 years, she will never be forgotten. Rest in peace sweet girl, enjoy chasing those seagulls up in heaven with Moki. We love you.

https://www.youtube.com/user/gardea23

Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT

Updated: April 10, 2017 2:46 AM EDT

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Mood:  happy

Ahhhhh... The sights and sounds of spring...

Sure, I will most definitely miss the beautiful and quite magical pure white snowflakes of winter, but spring is still A-OK to me! Spring also signifies a season of change. We are certainly heading into a new phase of our life. Lots of change!

There are so many cute ducklings and baby chickens at our local farm retailer! This is the first year in quite a long time that it actually feels like Easter is upon us! Eric even agreed with me, that if we had lots of land, there would be a few of these cuties coming home with us today. I love animals! First we must ride the legal course with litigation on our home. After all is said and done. I seriously doubt we will ever purchase another home, but instead are looking into buying land. If RV life pans out to be everything that we were told it will be, and we actually really do enjoy it... Then land it will be!

One step at a time.

Irish luck must still be in the air, even though its no longer March. Miss. Beautiful Albino squirrel paid us another visit this afternoon while enjoying some fruit seed and a new wildlife feeding block. We weren't expecting to see her again, but it appears that she might be nesting nearby. I sure will miss all the new wildlife animals that we have been feeding over the past five months, but do know that they will be more than OK and quite fattened up for the spring! Heeheeheehee!

#CountryPeace  #SlowWayOfLife

Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT

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Mood:  sharp

This blog post has been a long time coming!

This blog post might hit-home with possibly a few others or many other permalink readers who as well have defied a few odds of their own. Through out their own medical journey.

I don't know what in the world is wrong with some folks? Maybe it is just this day-and-age? I have not the faintest nor wildest clue why anyone would find being sick as some sort of competition among others who are sick? Even by those who aren't even sick, but healthy. For the life of me.

I am not sure if most folks expect those who endure cancer treatments to look a particular way? Hmmmmm? Maybe folks who have not endured any type of oncology or immunotherapy just 'assume' that patients are suppose to always look sickly? Then again, maybe society has this sick, twisted premonition of how people are suppose to act and look like when struggling to stay afloat. Doing ones best to defy the odds and continue on living life. EVEN... With a smile on their face.

Since when was being sick suppose to be some sort of demonic competition? I don't know if some folks had some sort of twisted assumption on what I am suppose to look like after radiation, immunotherapy and other experimental treatments, among a slue of other experimental drugs?. I am sorry, if wanting to continue looking my best, which allows me to feel my best, during my best days, bothers some folks. I am sorry, that I would much rather wear hair extensions, wigs or other state-of-the-art beauty accessories, than to show off what toxic treatments can do to your hair. Whether alone, what you are left with, as-far-as-hair, when there is no pigmentation growing back through every single strand of hair. Albino. White. That is what color you are left with and when or IF, I decide to share... This blog will be the first place when I let you know or even let you see. That is within my power. No one else, but me.

Sorry, if this blog may come across a bit harsh or brash. It should.

For those who continue saying that I don't look sick. For anyone who wants to line up and take my treatments for me. Stand in line for continued scans, countless lab work, umpteen dental surgeries, endless injections, lost count rounds of antibiotics, hospital visits, medical complications, among the ridiculous financial costs-medical bills.... Please! Step up! I would gladly take your place if you assume being sick is some sort of fun or twisted form of competition. I have held my tongue and typing blog fingers far too long. As of this week and overhearing some really demented comments regarding an assumption of what I am suppose to look like being sick OR... Better yet! How I should not continue realizing lifetime dreams or goals of mine. If you want to switch places with me. Please! Do! I would gladly switch places with those who live a normal life, work a normal job, have a normal family life, take yearly vacations, celebrate holidays without restrictions and overall live life without medical obstacles constantly in your way.

I am so sorry for those who are jealous. Although, I am not quite sure what the reasons are when there is clearly nothing about being sick that should equate any type of jealously or need for competition. It is not only disturbing, but down-right stupid. I earned my trip to see Journey. I paid my dues under the big radiation machines. I assume if you want to be jealous... Please take your jealousy to any cancer treatment center or your local hospice. Only then, will you find out and see first hand what it takes to be a brave patient during a brave journey.

For those who wake up, get up, dress up and smile for the world, when there aren't many reasons to smile in the first place. I applaud you! PFFFF... On other folks opinions!

Posted by GastroparesisAwarenessCampaignOrg. at 9:08 PM EDT

Updated: July 5, 2018 9:21 AM EDT

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Mood:  chillin'

Ahhhhh... The first signs of spring... Especially when you are about to take a giant leap of country faith!

It might be a good thing that I got plenty of sleep over the past 24 hours. A whopping 12 hours of consecutive sleep! Adding another round of antibiotics does nothing, but make me more tired and fatigued. At least I was able to take the drive up north with Eric to our RV site this morning. Sometimes a little fresh air does the body good! It's also a super-relaxing drive which makes this gal even more tired...

We still have lingering issues going on with our RV sale. More so due to Camping World initially pulling a fast one on us and selling us the wrong RV. That meant having to redo all of the paperwork and needing to recheck everything. Some may call it the ole, "Bait & Switch." I call it, just poor professionalism by the General Manager. Not the sales person, since most of what happened was clearly out of his hands. Literally. The rest? We are leaving it in corporates hands since we have enough to worry about with finishing up vacating our 5-month old new home which continues to sink. The second litigation will begin soon enough! The quicker things can get settled. The faster everything can be overturned and Eric's VA benefits will be reinstated. Everything else, legally, could take 1-2 years before settling out or... going to trial which would be a bad thing on those involved in the fraudulent sale of a very unstable, uninhabitable and unsafe home. There will be aspects with the legal process, in which, I can not be an active party since the mortgage loan is solely in Eric's name using VA benefits. The first time he used his veteran benefits which turned out to be the worst experience possible for him. The entire situation is not only sad, but has been extremely stressful. I can only hope and pray that justice will be served accordingly to all parties involved. It might be a year or possibly even two years, but all good things to those who wait. Patience is a virtue!

At least we have a new roof over our head. It might be in the form of an RV roof, but tis a roof! The peace and quiet alone in the country is enough to make me excited for the change of pace. I won't miss the constant walking on egg shells with a home ready to collapse at any given second. I won't miss the non-stop maintenance and wasted money on a home that defies all repairs. I certainly won't miss all the constant cleaning due to the foundation now literally crumbling inward. There is actually a lot I won't miss, but what I do miss, is having a permanent place to call, "Home."

At least we still have Mother Nature on our side and all of God's creatures both big and small. However, with this new site surrounded by hundreds of acres of wooded land, there will just be a whole lot more to enjoy!

Good ole country! God's country!

As the banjo plays on...

Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT

Updated: April 5, 2017 11:16 PM EDT

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Mood:  chillin'

Another week... Another round of treatments...

At least we woke up on a funny note! A BEARY funny note as Beary kitty did her very best to appear as if she was literally inside Miss DaisyMae & SnugglyDoo's cage. Heeheeheehee! It wasn't just me who was fooled into thinking she somehow got into the cage. Eric freaked out! All I heard was, "OMG!" Hahahahaha! Sometimes, a picture really does say it all! Hahahahaha!

On a not-so-funny note...

Unfortunately, I am once again, dealing with another round of recurrent e-coli. My oncologists have lost track of how many rounds of antibiotics I have endured since contracting this nasty infection in the hospital bathroom, outside of the cancer treatment center, during one of my radiation treatments. I still regret using the bathroom that day, which wasn't the cleanest, but either I was puking in the hallway or in the bathroom. Mistakenly, I chose the bathroom. It has taken my doctors months upon months, trying to rid this darn infection! As soon as we 'think' we have it under control... POOF! It comes back again a few weeks or as of today... A month later. If we can blame anything for not helping the situation. We can clearly blame a depleted immune system, since any normal functioning immune system would had responded to the first round of antibiotics. It's a good thing that I stay in close touch with my doctors! It's also good to catch things early on! Yep, another round of treatments and another round of antibiotics to end the day.

In the meantime... Time for lots of rest and plenty of zzz's...

Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT

Updated: April 5, 2017 10:13 PM EDT

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Mood:  celebratory

I can't believe it! Physically, not only did I make the 3+ hour drive, but I finally got to see one of my all-time favorite bands in concert! JOURNEY! We even got a parking spot right in the front of the Ford Event Center! If everything could possibly go right for us this evening. It most certainly did!

I once again defied the odds... I realized my Journey!

JOURNEY!!  YAYYYYY!!!

Talking about so many reasons to celebrate! So many reasons to celebrate life and all of the ups and downs that we both have endured... Together. There is no other human being on this planet that I would had enjoyed this journey with more, than my one and only best friend, comedic side kick, confidant, spontaneous jokester, up for anything... Hubby We just... Click! We not only sang our way to the concert, but as well laughed at quite a few happy and quite memorable moments that we have shared over the years. I was determined as ever to make it to the concert! If it wasn't for Eric continuing to cheer me on and always letting me know, "You got this!" I doubt that I would had pushed myself so hard. I can't begin to describe the feeling of truly having someone there for you. Having a soul mate and best friend there to lift you up when you feel at your most absolute worst. In such a short amount of time, we have endured a lifetime of struggles and an abundance of pain. Guess what? Here we are!

We made it through the JOURNEY! The next chapter can only get better from here! AMEN!

Thank you to those who helped make one hell of a Bucket List dream come true! The entire trip could had not gone any smoother nor could the drive had been anymore comfortable. The concert was everything that I could had ever imaged and then some! A picture perfect, once in a lifetime opportunity to cross off another item from my Bucket List.

Would I do it all over again? I most definitely would do it allllll over again!

Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT

Updated: April 5, 2017 8:04 PM EDT

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Mood:  celebratory

Talking about EXCITED!

Nah... More like... SUPER  EXCITED! A bit nervous too!

A time to celebrate life with another new journey. This time it was the once-in-a-lifetime musical kind of journey!

A same-day road trip to finally see Journey in concert with the best seats in the house! One of THEE best Christmas gifts that a gal could ever wish for and which I vowed to not go to waste! I didn't care how I was going to get there, but hell or high water, I WAS GOING! Heeheeheehee!

Thanks to Ben and Kyle for providing the first of many important must-haves in order to make our journey as comfortable as can be out on the open road. This Yukon was not only spacious and quite roomy, but it also had really nice heated seats and every kind of optional feature one could ever want or find in an SUV. I thought the expedition that our insurance company reserved for us to use while our car was getting repaired was nice, but this Yukon is actually a lot nicer! I can't begin to explain how much more comfortable the ride was while sitting for a little over 3-hours up and 3-hours back since we had to do a same-day trip for medical reasons. I also have to make sure not to push things beyond my physical limit since I am still going through immunotherapy treatments.

Where there is a will! By golly! I will find a way through my JOURNEY!

The 3-hour drive didn't seem too terribly bad, although we had to make quite a few pit stops so I could get out to stretch and be kind to my kidneys along the way. With lots of healthy beverages for me, snacks for Eric and Journey's greatest hits to listen to while driving out on the open road. A little over 3-hours later and realizing they were actually an hour behind us... Decades later... Not only a dream come true, but a Bucket List in the making was finally realized! 

I MADE IT!

With nothing, but sheer determination and a bunch of photos to follow! We finally arrived to our destination! Thank YOU to my dear friend, Cheryl in LA for such an amazing shirt that she personally made with beautiful tiny Swarovski Crystals (letter 'T' accidently hidden in photo) which also made it to my...

Tomorrow's blog.. Part 2

Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT

Updated: April 4, 2017 1:40 AM EDT

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