Mood:
sharpNow Playing: Day 811-The Final Road To Survival
Sometimes when you least expect it history makes a strange full circle.
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.
YIKES!
Now it seems that bad deck of cards could had most likely happened before I was even born. It sure has my surgeons who did my prior surgeries racking their brains because its rare to see Idiopathic Colonic Inertia-meaning the nerves in my colon and intestines stopped working not to mention my Idiopathic Gastroparesis which did the same to my stomach. Are they all connected? Yes. Now they are wondering just how much nerve function I ever had to start with?. Not to ponder on the past or drive one crazy to find answers that are not available because the sad part is things that could had been run as an infant are a little too late. Technology back then wasn't as advanced as it is now. This is why the medical testing equipment we now have is able to detect paralyzed organs-dsymotility. We could be here all day, evening and into the following day, weeks and months trying to piece the missing puzzle pieces of my unique medical mystery however it is what it is. "Que Sera Sera."
The sad part makes me wonder of other young children who start off a life of GI problems that will progress through out their lifetime unless things are caught early and intervention is made by a specialist. I would never want to see any child go through what I have nor would I wish it on my worst enemy and trust me, I have had some crappy things happen by some rude and inconsiderate people through out my lifetime. AMEN.
Today was of course Drano aka Hell-In-A-Jug day.
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?....
After careful "Hair-debate" this evening I decided July will be the month I will say farewell to the last of my locks. The bald spots on the side and back of my head is getting worse each week and I refuse to look like Count Dracula from Sesame Street. At least let me have a bit of dignity to choose my hair-less time. Hahahahaha! OK. So, maybe Count Dracula has less than I do but you get the point. If Charlize Theron can do it for a movie role then surely I can do it for the role called, "Life."
As I face the inevitable and end of life I don't consider it being pessimistic. Its called being a REAL-istic person when your insides are progressively going against you. We all make plans each day on how we live our lives but in the game of life there will come a time when we all need to make plans ending it. I am fortunate to have a fair-warning. I call it the past 4.5 years, "Defying the odds."
Que Sera Sera
Que Sera, Sera,
Whatever will be, will be
The future's not ours, to see
Que Sera, Sera
What will be, will be.
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!
chillin'
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... 
not sure
What would the wildlife gang do without me? OK. Maybe not have an endless supply of food or their new treat Cheerios. Hahahaha! Eric got the squirrelie (new word) scared out of him this afternoon when he went outside to get something from the garage and the squirrel gang greeted him on the front porch. Hahahaha! What can I say? It was past their feeding time and since darn GP kept me up with pain until 8am I didn't get up until 3pm. It was way past their feeding time so they were pretty upset. Sooner or later they might learn how to ring the doorbell. Hahahahaha!
I sure do miss a "normal" life but what can you do sometimes?.. John of course had to really round off my evening by sending me super jealous photos of the beautiful ocean that I love and truly miss. Sure...I have lakes here in the area but its not the same as the ocean and coastline. He had dinner with friends at a huge marina diner with an amazing view! SO JEALOUS! Of course he said, "Once you all get moved out west I promise to come pick you up and take you to all the big hangouts and the best beaches."
happy
*From 1969 to 1974, Davis played housekeeper Alice Nelson in The Brady Bunch television series. Since then, she has returned to take part in various Brady Bunch TV movies, including The Brady Girls Get Married (1981) and A Very Brady Christmas (1988). She also reprised her role as Alice Nelson in two Brady Bunch spin-off television series: The Brady Brides (1981) and The Bradys (1990). Davis has appeared in a number of Brady Bunch reunion projects, most recently TV Land's The Brady Bunch 35th Anniversary Reunion Special: Still Brady After All These Years. The Brady Bunch was awarded the TV Land Pop Culture Award on the 5th annual TV Land Awards. Davis and other cast members accepted the award, and she received a standing ovation. 
down
Wow! Do I have a super Drano aka Hell-In-A-Jug hangover from hell!! I think Oreo is even having a sympathy day for me but at least one of us gets to rest. Forget about sleeping all day for this gal because I need to keep moving. It was a S-L-O -W day but heck! at least I did it and even with a smile on my face. Half-smile that is. Hahahahaha! The worst part of the darn weekly treatments is now I have to follow them up with the rest of the injections. Its like getting hit in the AS* twice! OUCH.
Someone even wrote to GP Rocky last week saying, "Your diary reminds me of Anne Frank because you both are to the point and brutally honest." I certainly agree because you can't get more honest when the bathroom becomes your second best friend. 
Hee,hee,hee,hee...
I guess we will just have to wait and see... With no mold issues anymore from the monsoon rain we had in May and foundation repairs coming close to an end its enough to make us both JUMP FOR JOY! AHHHHHHHHHHHHH!! Eric said today, "'After everything is finally finished next month we might start getting bored because we are so used to having things to do." He might want to stop while he is ahead because when you live in a house there are "always" things to do. Hahahahaha!
I know my dear friend John would be super excited because that means we would only be a 2 hour drive away from where he lives in California. Life is always changing and life is also short so if you feel the winds of change its important sometimes to see where the winds might take you in the process.
quizzical
"Most" people get to clear their minds and set them free by taking trips. Then there are those people like myself who can't travel and must unravel life's great mysteries without catching a break.
I always said I would cut my own hair when it came time but maybe I should put that trust into my hairstylist since she totally understands my unique situation and the inevitable.
So with it being treatment day I can only say there wasn't much of anything else planned once the first glass was consumed. At least John has been having a blast getting used to his new life out west. He even got to meet one of his favorite legendary singers yesterday. I am so happy for him! He's planning a trip back to his old stomping grounds in September to come visit me. I can't wait!!
