Mood:
on fireNow Playing: Day 815-The Final Road To Survival
WOWEEE~
This one heck of a HOT 4th of July! 98 degrees>no way! More like 108. You don't need to light any fireworks. All you need to do is stand outside and the heat will light them for you. GEES!
Outdoor events for today? Ummm...NOT. Indoor low-key festivities done my way? Yes. This includes a game of 'Life' in which I might had gotten the defective game when I was born. Hahahahaha! At least our company who came over did great with the game. Even we didn't get high scores like they did last time we played. That is whats so great with Wii games. You can PRETEND! Next game we are going to try during treatment day this week will be the game of 'Operation.' This way I might be able to learn to perform my own surgery. Heck, I won't need to get denied time and time again getting my hopes up only to be let down. I can just learn to do my own Wii surgery! Hahahahaha!
Well...it sounded good anyways.
The heat has not only zapped my limited energy but also Oreo's. He has been doing his fair share lately of lounging around the house. Littleblue only lasts around 5 minutes outside. This is going to be one crazy hot summer! The only time they got to wear their Independence day bandannas was indoors today. Littleblue has so much fur that it makes her way too hot. Oreo doesn't mind though, he likes to be dressed up. Hee,hee,hee,hee...
Since I only have two more treatment-free days left before I have to do it allllllllllllllllllll flippin over again I was determined as ever this evening to get out of the house! Tomorrow I see my doctor so they can start me on some strong meds to possibly help ease my intestines being so inflamed and putting pressure on my lungs. I can only handle so many times waking up not being able to breathe and same with during the day. We did make it up to the park this evening around 9pm however it was still super humid outside. Its tough being stuck in the house during the time of year when you are suppose to be enjoying outdoor activities. Its no wonder I love fall & winter because I finally get to be outdoors after being stuck inside half of the year. AMEN.
I do receive occasional letters and emails from those who "assume" I am hiding a secret bout of depression. Even more fascinating are those who "assume" my demise won't be Drano aka Hell-In-A-Jug, blood vessel rupture or bowel perforation but instead by the hands of this "assumed" depression. To quickly answer those letters and emails:
I have a team of over 18 specialists including those who know first hand that I don't have the genetic make up for depression. These same doctors have been treating me for over 8.5 years and we talk about everything. We have gotten so close they have become like family. Using the term, "Throwing in the towel" means I am rightfully so getting tired of the treatments and false hopes so I have to come up with my own game plan and to me "Throwing in the towel" means I am also tired of the non-stop medical frustrations. This doesn't mean I am depressed. If I was depressed I would had been for yearsssssssss....Also diagnosed over and over again for years.......I am thankful and blessed to have the genetics of a person who instead gets mad, frustrated and down right angry. This also puts me into the group of folks called, "Fighters." This is how I have over come the odds because I don't give up, give in, but instead I get angry and fight. Depression isn't something to take lightly, in fact I do know many people who fight depression on a daily basis. Its important to get tested and see a doctor if you start displaying the signs of depression.
So maybe I just went WAY off the topic of today which is about my GP 4th of July however I had to come clean by saying, "If you are looking for some sort of "Secret depression" you won't find it here." Instead you will find a "Firecracker & Fighter" this 4th of July called, "ME." 
chillin'
Toss. Turn. Toss. Turn. That is how my night of sleep sound goes and so does when you try to get back to sleep only to have the electricity turn off. 
Eric has been doing more than his fair share around the house including all the yard work. Its been way too hot for this gal so now Eric has taken over. The spring flowers that bloomed late this year finally need cut back so the wildflower seeds can start taking off. I assume due to the excessive heat some of the new flowerbeds aren't doing so great. Hopefully the rest of summer won't stay like this but I have a hunch we have only just begun. With the high humidity the mosquitoes have been quite a treat! Just ask Eric who was only outside for 2 hours and got over 11 mosquito bites. We use Deep Wood Off products however these must be SUPER mosquitoes this year! YIKES!!
Things are slowly getting worse and its not fun waking up in the middle of the night feeling like you are being choked. Worse is when it hits me out of no where through out the day. Today was one of them. For now they have me using a nebulizer to see if it might help until I see my Specialist Thursday to get put on stronger meds. I like to call them, "The GOOD STUFF!" 
With it being so hot and humid outdoors its been a challenge walking. I don't mind walking indoors but I prefer walking outside at the local park. Lately we have realized after 8:45pm is a good time to head to the park. This evening it was a bit cooler outside while making our way around the lake. Also since we now walk later in the evening the other wildlife are more active. We first saw a huge Raccoon then quickly followed by a family of Malard ducks with her 9 babies. They were too CUTE! They were also hungry which made feeding them tricky with other Malard ducks standing nearby. The parents stood close guard over their babies but boy! did they mean business if any other ducks took the bread that the babies were eating. One little baby even went after an adult who came too close to the others. Talking about a little feather spit-fire! Hee,hee,hee,hee.... It was a sight to see indeed!
The sweats and fever have continued on and off through out the day which leads me to believe either the treatment is playing with my immune system or visa versa. Regardless after contacting my Oncologist/Hematologist's assistant this afternoon it was strongly advised I keep my appointment for next week. My doctor needs to rescan and check my lymph nodes every three months and I am due so I guess there is no way getting out of this one. 
Part of not throwing in the towel just yet includes building onto my GP oasis here at home. Since the tidings of bad news last week its important to make my home as safe as possible. This also includes the air quality. We are on our way of wrapping up months of house repairs due to the May monsoon rains and floods so the next step this week is to make sure the mold is also finally under control. Since we added new dehumidifiers on all three levels we have also noticed less water in the machines which means drier air in the house and hopefully no mold. We had James and Josh from Advanced Air Technologies come to our home today to clean out all the main lines in our furnace, air ducts and vents. They also checked on any mold issues that might be hiding inside the air ducts that can't be seen with a naked eye. It took them almost three hours and after wards they showed us what was picked up through out the house using a high quality filtration machine and vacuum system. Let's just say having a home 102 years old means lots of dirt the machine picked up but luckily for them no ghosts! Hahahahaha... Well we didn't see any but that doesn't mean they didn't take any home with them. Hee,hee,hee... James and Josh did a great job and I am happy to say between the latest air quality tests, mold interventions and today's air duct, vent and furnace system cleaning we are finally free of any scary mold! WOOHOA!! Now that IS reason to celebrate!
Its been more than a few days since I was able to walk at our local park and feed the ducks and geese. Being stuck indoors most of the time is enough to drive anyone nuts so we decided to take the wheelchair and head there this evening. 8:45pm is a great time to walk at the park seeing the sun is starting to go down which means less sunlight and heat. There is also a nice breeze around the lake and less people to stare at the masked gal-me. I am still getting used to it and wheelchairs strangely draw less attention than masks. Not quite sure why that is? Usually children are mostly the ones who stare and do the double takes but this evening I found myself doing my own double take. I haven't bounced back completely from this last treatment so I didn't make it that far around the lake but once we started to head back to the parking lot I locked eyes with a young girl who was around 9 years old. She was in a large bike stroller which wasn't what caught my attention. It was what was in the back of the stroller that did. Her Mom was using the large bike stroller so she had enough room for her daughter and the oxygen tank. It was obvious she too suffered from a medical condition and disability. We both had something in common. We shared masks. As we passed one another we locked eyes. She smiled and I smiled back. It almost made me cry. Not because it was sad but because for once I felt excepted by a child who did understand. Her Angelic smile made my day and one I will never forget.
Since this treatment decided to play a harder internal game on my organs than last weeks I have been home sleeping most of the day away. This isn't normal for me because I usually have enough energy to at least keep busy the next day after treatment however this time it didn't happen. At least Eric set an alarm for every two hours to wake me up so I can take in fluids and not get dehydrated. Let's just say after 8.5 years my poor body is starting to get tired and that energy is wearing thin. I don't blame my Idiopathic Gastroparesis on anyone, in fact over the years my heart has grown 100x the size it used to be when it comes to helping others who also suffer from GP and other disabilities. I assume as my friend said this evening via text, "Its because you walk in the same shoes. You actually "GET IT" and what it feels like to suffer." Still on days like today its hard not to just throw in the towel. I struggle sometimes and it isn't easy when your body is down right tired but your mind is still fighting. 
sharp
There are quite a few specialists who have recently been able to pull prior records from decades ago. Even when I was a baby. Which came first? The chicken or the egg? No one is certain although I guess anyone can try to be Einstein in the confusing world of Gastroparesis. Tanya always said, "She has been given a bad deck of cards in life." It now seems they might had been handed to me at birth. The questions remain in the minds of more than 10 specialists now who have treated me over the past 8.5 years whether I suffered from lack of nerve development before I was even born?. Some questions will never be answered but many prior records are showing a sick infant with intestinal problems that then turned into a sick pre-adolescent with stomach problems. Could the Gastroparesis journey started way prior to 8.5 years ago? The bigger questions concerning my surgeons are the ones during visits to Children's hospital when I was a young child. Was there a surgeon back then who could had heeded the signs? The early warning of things that were to come? The inevitable? No one is certain but one thing they are almost certain of now is that this didn't just suddenly "happen." There were years of GI problems prior to my Idiopathic Gastroparesis diagnosis. 
I now dread this stuff because I REFUSE to allow it to be my final demise. We now make it a day full of Drano fun by decorating the jug. Anything for a good laugh because during treatment I will take all the laughs I can get! Eric decided to take another one for the clean-out team. WOOHOA FOR ERIC!! Who else would do this? UMMM....NO ONE I KNOW. Hahahahaha! Willingly anyways.... He did tell me later this evening, "NEVER AGAIN!" I guess the ole jug of salt water and chlorine was even a bit too much for him. If he can't handle a small glass he would never make it through what I do on a weekly basis. It sure made a believer out of him. Maybe it needs to make a believer out of a few other individuals I know too. Hmmmm?....
don't ask
While the surgeon and doctor both took turns coming into the room I watched from the window dark eery clouds slowly creeping into the area. The appointment wasn't going any better. There isn't much you can tell me that is shocking. Sadly I have become a pro at taking bad news which might be a blessing because while taking one small step forward preparing for 3-step surgery today I took 10 steps back then it was a complete BUST! 
Well...it was. Between them running a few unexpected tests an hour visit turned into 2.5 hours. Not only that but after they took a month looking into my prior medical reports, surgical op reports, photos, specialists letters, etc I was told, "As colon surgeons we only do one extensive surgery like this in a year. Even the best colon surgeons in the world only do one extensive surgery a year. Sadly we can not perform any surgical procedure. We can not remove your colon due to extensive damage and progression of your Gastroparesis and connected problems." It might be a good thing I already expected the worst of the worst today. They went into full detail of the complications I am experiencing due to progression of my condition. Surgery wouldn't help me in fact they said, "Your electricity in your body is causing a host of problems. Your low blood pressure should be controlled by an increase of fluids and electrolytes however your intestines no longer work. Same with your low blood sugar, kidney dysfunction, seizures, etc." Of course they can run two tests that so far after 8.5 years I have "YET" to have done but it will not help the situation. It "MIGHT" provide more answers but it won't provide a cure nor any relief. The damage is done and now there is no turning back.
If there is any good to come out of this FREAKY FRIDAY it was finding an old coin laying right in the middle of the new flowerbed on the side of the house. It wasn't there yesterday so the winds must had blown it in however after research this evening I found out my coin literally did have wings! It was an old 1920 liberty dime in which liberty has wings. They call it Greek wings since it represents being a messenger of news. 
I need to do lots of walking and with the summer heat and humidity now in full swing its leaving me scrambling for indoor places to walk through out the day into the evening hours. This is the time I must get creative or I run the chance of bowel obstructions by not keeping gravity on my side. Sure, the Drano aka Hell-In-A-Jug works but it doesn't work all the time since my condition continues to progress. This evening we had to start finding indoor complexes where I could walk down the pain and inflammation. Crazy the things Gastroparesis patients have to do in order to stay out of trouble. I tend to think the summer months are the worst for all of us.
My friend John sent me an update on the beautiful weather they are having out in Napa, California. A cool, dry 80 degrees with variable light winds. Gees! Like I really needed to see that and now it only makes me yearn to move out west even faster. I would take the weather out there any day compared to this nasty heat. Better yet, maybe Alaska or even better the North Pole. 
"LOOK OUT SANTA! HERE WE COME!" Hee,hee,hee,hee... By the time it was 8pm the temperature was up to 104 degrees. I haven't seen any tumbleweed just yet but if this heat continues it won't be too much longer.
cool
It wasn't bad outside this afternoon however my allergies are starting to get worse. We haven't had any rain in quite sometime so the grass is starting to turn a few shades of brown and resembling a bit like tumbleweed. Eric might not have to cut the grass after today for another few weeks. Hey! we might not need to head out west after all and instead the desert might come to us. Ohioada-Ohio & Nevada. Hahahahaha! Since we have no plans right now to move due to a pending three step surgery I want to add a few nut trees around the property. The squirrel gang gave the idea a HIGH-FIVE from the current trees in the front yard upon the news. Hee,hee,hee,hee... Eric said, "Great! now we will have every squirrel in the city living around the house since they would now have an endless supply of food. They might instead think we are NUTS." Hahahahaha! Come on now. They already have an endless supply of food but now it would just make it more convenient for them. Call it a, "Self-Service Buffet." Hahahahaha!
We have just a few last minute things left to do on the project list. Today I got two of them done. I didn't realize how long I had some of my financial accounts and although all in good standing it was still time to part ways. One was opened over 14 years ago. WOW! Talking about time flying by! It felt good to continue making positive changes and at the same time closing a few old chapters of my life. Bear kitty even let me go through his huge basket of toys in order to clear out the old ones. OK. So it wasn't a lot because once he heard me in the basket of toys he quickly reclaimed them. Fur kids sure are smart!
He was the only one to not only get a few bites but catch anything. It must had been the secret bait weapon-a can of Spam. Yes, Spam! and the fish sure loved it! Hahahahaha!
Eric got a few snagged lines in the rocks but luckily he didn't have any problems with his reel today. It seemed warmer this afternoon because we didn't have the breeze like yesterday but I continued doing my best to have fun although I didn't last that long. We left earlier than expected but only because I honestly had zero energy left and my insides were screaming with pain. You can only imagine how the rest of my day went right? Right! A heating pad while lounging on my huge comfy recliner.
Fwd: 3 open incisions and a drain. Much worse than surgeon anticipated. It was the pacemaker. It was entangled around small intestines causing obstructions. It eroded into the bowel and bowel was extremely inflamed. They had to take a section out of my stomach as it was causing problems there and they did take the pacer out. They think they might be able to save the bowel but it is a wait and see. They said I am lucky I didn't wait any longer. This is the worst surgical pain ever for me. I would never get another pacer. -AMarie
lucky
Call me, "SUPER SPONTANEOUS" now because if there is anything I want to do I am willing to run a risk to do so and if that means going way-WAY outside my comfort zone then so be it. AMEN! Eric knows how much I miss being near the water and since right now we must wait to find out the next step towards surgery we can't head down south right now. I wouldn't be able to drive with my deteriorating spine however I would risk it all and fly if it meant seeing the ocean one last time. You ever have that feeling that things aren't looking so good with your health? I have had a rude reality check lately with my specialists and of course today after my first fishing trip in years I found myself taking more frequent breaks in order to catch my breath. 
Do they know I will feed them or what?! Eric said, "Ok, Wildlife Mom I guess they know you have a stash of bread with you. How they know though I have no idea?.." Hahahaha! They just "know." Since it was only 82 degrees today with lots of wind and little humidity we stayed for a little over two hours with lots of breaks in between so my back didn't lock up. Thank goodness for the walking trails. Eric spent more time messing with his fishing pole and changing out the floater and weights.
Hahahaha! Let's just say the last time these fishing poles were used was in Florida on a pontoon boat out in the middle of the ocean. The reel was full of sand so his pole kept locking up on him so it was smart to bring two extra fishing poles. I used the one I bought on my last trip down south so it was smooth sailing for me although the only thing that was biting at the lake was the ducks and geese who were eating the loaf of bread I brought with us. Who cares though because I had a great time! I forgot what fun it was fishing and how relaxing too! 
We had plenty of shaded places at the lake to fish so I didn't get overheated or burnt. The sun was behind us so my head didn't suffer and we brought plenty of fluids and "what if" medication. All in all it was a perfect day and it sure brought back some fond memories. It was an emotional evening when even this gal started to finally fully understand the seriousness of my fragile health. Maybe I can visit Florida again one day soon. Maybe together as family we can visit the coast again for one last time by putting our differences aside before its too late. I still hold onto hope because in my life that's all I have left... 