Mood:
d'ohNow Playing: Day 775-The Final Road To Survival
Today was the last day enjoying a trip to the local park. The heat is getting to be just way too much for this gal. My Gastroparesis also dislikes heat along with the connected seizures/migraines.
No. There is no cure for Gastroparesis so if you hear the hype word to the wise: Don't believe it.
Gastroparesis is also not just a condition isolated to the stomach. It is a progressive condition that starts with vagus nerve damage which results with stomach dysmotility. Gastroparesis does over time progress unless it is a result of a virus which "if" caught in time it can be reversed with antibiotics. I am not sure why any clinic or teaching hospital would have their staff contact any Gastroparesis organization telling others there is a cure and always was a cure but they just hide it for years from patients. That is "false" information and very misleading. Never, ever give out false hope to a Gastroparesis patient. As my specialist team of 18 which includes three clinical hospitals and two mayo facilities stated, "If there was any surgical or medication cure for Gastroparesis we would be the first to know." Now only did my doctors clarify the information I also wanted to clear the air with other patients. Just remember Gastroparesis is a condition that results from extensive and severe nerve damage. Until stem cell research makes huge advances will we then have a cure. This includes testing to isolate the damaged nerves and surgical options to take out and replace damaged nerves. If you want to donate $$$$ for a Gastroparesis cure make sure you do so towards a stem cell research facility. AMEN!
Back to the park...
Its always nice to clear my thoughts and mind with a nice walk at the park. I am a HUGE FAN of the wildlife and land that hasn't been destroyed by human hands. Nature at peace! Since this is Memorial Day weekend others also had the same idea getting out to enjoy the day before the heat and humidity arrives. 90's should be left out west-Nevada not out east. Mother Nature is sure confused isn't she? My friend John said, "Its not even that hot out here in California," as he continues his search for a new home.
Since my holiday weekend will consist of me, a few glasses, red Hawaiian punch and a large jug of liquid Dynamite (Drano) my friend suggested we go out and do something. I couldn't agree more and lately with surgery on my mind and the house mold repair problems still lingering I flippin need a break! CHEERS TO THAT!! What seemed like a great idea didn't last but a few hours. Same with driving. Once we walked outside and started driving my head games began. I took all my medication but even after arriving at our destination it didn't get any better. The air indoors was musky, stuffy and humid. I was bummed because we rarely get a chance anymore to go out and have some fun. My good days are few and far between. We had an early night but the fur kids didn't seem to mind. After a disappointing evening and trip it was nice to see happy tails greeting us when we got home. This is going to be a very, very long weekend with no relief so far between medical/house issues in sight.
Where is the help when you need it? This is getting to be way, way, way, way, way, way, way too much for two people to handle. One sick-Me. Another being pulled in a million directions-my friend/Caregiver.
happy
Where has the time gone? It feels like just yesterday when I bought Littleblue's first little pink dress. Now the only part of her that fits into the dress is her front paw. Hahahaha! Maybe "HUGEBLUE" would had been a better name!
Since this has been Littleblue's week she has been treated to plenty of walks at the local park, new chewies and lots of new toys and treats. Oreo hasn't complained one bit since Littleblue has been nice enough to share. Even her birthday shirt from last year barely fits. She has grown up to be one beautiful "BIG GIRL!" 
I wish my Gastroparesis would allow for more outdoor time but the sunlight and heat continue to easily get the best of me. We are suppose to have work started on the house repairs this weekend but we will have to wait and see. Thank goodness for no rain in the forecast but I sure won't be enjoying this crazy heat!
My dear friend John finally made his first trip out west to look for a new home since getting his new job with the government. He will be living in Napa, California and I couldn't be happier for him! We have been friends for almost nine years and had a bet for the past eight to see who would be the first to move out west. He always wanted to live in California and me-Nevada. Looks like one down and one left-Me. Hee,hee,hee,hee... So not fair the amazing photos he shared with me today. SOOOO NICE! John is hoping to finalize his move by the end of next month and if anyone deserves true happiness its him. CHEERS to John in finding his dream home!
HAPPY 4TH BIRTHDAY MY LITTLEBLUE XOXOXOXO
chillin'
Happiness to me is new emery boards and clothes that ACTUALLY fit! Its also finding a way to better darken my sleeping quarters so the spring/summer sunlight doesn't get the best of my head.
The spring and summer sunlight also got to me around this time last year and usually makes my seizures worse. Arm tremors drove me nuts today so if I need to make the front part of the house darker then welcome to my new bat cave. BOO! Talking about literally sleeping with the VAMPIRES...My friend-Caregiver said this evening, "Wow! this is going to make the room so dark that I might have a hard time now waking up." Hahahaha! The things you must do being sick. Crazy isn't it?
Who is that masked/sunglass woman anyways? Hahahaha! My joints and muscles are still sore and recovering from the last round of seizures so walking is a win-win for this gal. Hopefully I can catch a longer break and get back into some sort of routine but with Gastroparesis you don't live for tomorrow. You live for today.
celebratory
As a Idiopathic Gastroparesis patient I have found through the years that when there is bad news ten times as much good news soon follows! What has been pouring into my mailbox, email and cell phone has been an amazing amount of support from those who have decided to step forward helping to raise Gastroparesis Awareness. This blog that I started over two years ago has not only been a way for me to express myself but also a means to help others understand the many ups and downs living a life with Gastroparesis. 
You can write it out, map it out and even plan it out but sometimes life doesn't always go as planned. 
With any bad day there is always a silver lining! My doctor called later this afternoon with my lab work for my kidneys. Luckily I won't have to see another new specialist to add to the current list of 18 and instead I will just have to follow up additional testing with my Nephrologist. My friend also upon getting the mail brought in a package filled with amazing news in the fight for Gastroparesis Awareness. Indeed the Gastroparesis Awareness Campaign Team and GP family should be very proud! 
bright
I have quickly come to realize that when people alter their outer appearance it also alters their soul.
In the world of pain and suffering, true heroes can be found...providing special comfort and relief. They choose to make a difference, regardless of the cost...always willing to help others in their grief.
not sure
It took me a few days but I am starting to wrap my hands around the inevitable medical changes I am soon to face. 
The peace I have is knowing there is an amazing team of 18 specialists who all give 110% of their heart and soul in order to help me live the best life I can and truly CARE! Besides my specialists there is a lot of work and support that will need to go into the step by step process before and after surgery. Either that external support system behind the scenes are "in" or "out." I hope to be pleasantly surprised although expecting the worst but hoping for the best. I still have faith that people can change but only time will tell. As for now my friend-Caregiver has his list of duties to make this as smooth as a process it can be without any stress involved. Its amazing when my doctors told us how much internal damage stress can cause a pre existing condition so this time I am listening and staying with the no-stress program. 
They are just the cutest! His own fur kid enjoys watching the gang outside playing during the day while Mom stands close by protecting them. He said, "One day they just appeared and have been hanging out every sense." Hopefully Mom will continue taking great care of her little ones and they will find a new home soon before the summer heat arrives.
With a ton of things weighing on my mind regarding the house, moving and major life changes I added another one that trumped the rest this afternoon. My specialists appointment went as expected but with one huge twist. It seems the "temporary bandaids" for my paralyzed intestines aren't working anymore. In fact things are progressing faster than expected which is leaving me more sick than I already was to start with. My mind is still in a fog from the appointment. The only thing I can say on my blog today is I will once again have to endure another major surgery. Todays news has also trumped the decision of moving this month. In fact for my health sake I will need to hold off on things until the first of July. My Gastroenterologist also had reports and letters from my other specialists including my Oncologist/Hematologist which clearly explained the severity of things and the need to start getting my body and mind ready for surgery. Maybe once I can wrap my brain around things over the next 24 hours I can explain to others in further detail but for now its time as my doctor said to take that stress level from all the way up to all the way back down. DITTO! 
One hour me and my friend-Caregiver are up then the next minute we are down. This is NUTS! The stress is off the charts and I am not sure how much more house drama I can take nor others adding to my stress. Surely I just need to learn to hit the ignore button and walk away from additional stress brought on by others. For now there are far more important things to worry about such as where to move, if I can move and whether or not my body will allow for a move. My friend's buddy at work has family who owns a construction company that has offered their heart, time and resources in trying to fix some of the home water damage issues from all the excessive rain we have endured the past few months. What we really need isn't a few people to help. What we need is a "TEAM!" 
The strange bruising which as of two months ago has a rhyme and reason due to my lymph nodes in fight mode is once again flaring up not that anyone should be surprised. Especially me. Can I do this huge move? Will it be safe? What if we stay at the house during repairs? Will it put me at further risk due to the hidden mold? Question after question after question have been filling my days along with the physical stress of constantly having to be on the go. Where is help when you need it? Too busy to care and too busy to lend a hand. That's where. Negative attitude? Sure. Who wouldn't with the situation going on? Not everyone can be a great actress and if so I guess you won't be seeing me on any soap operas or block buster movies anytime soon. Hahahahaha! I see my Gastroenterologist tomorrow and boy! do we have a lot to talk about. Maybe he can give me some insight on the boundaries that will need to be set being sick while trying to get past this unfortunate house situation. Amen. In the meantime if "help" can find us we are only a phone call away...