Mood:
don't askNow Playing: Day 810-The Final Road To Survival
I don't know why but I had a strong gut feeling this was going to be one of those days. It was going to be, "FREAKY FRIDAY!"
Thank goodness my body and brain got a solid night of sleep because who would had known after today's set of strange events I would need it?.. Once we woke up Eric took care of everything while I got ready for the eventful day. Since the drains have yet to be finished on the side of the house I turned on the weather channel. Although they weren't calling for any rain soon I had a odd feeling we might find the storm up north heading down our way. We only have a 5x5 section near the back door that isn't covered so surely that can wait until we get back home from my surgeon appointment. Right? Well...WRONG.
I hadn't been to this new surgical center yet which is located only 15 minutes from our house. We were right on time and once we got checked in they took me back right away. I told Eric to wait in the lobby and if I needed him I would have the nurse send him back. Needless to say I didn't need him and its a good thing I decided to brave this new chapter solo. Not only did I meet the new surgeon but also another doctor on staff who found my unique medical condition, "QUITE FASCINATING!" This of course isn't a good thing because that tends to always mean bad news ahead. The first part of the visit started on a bad note when they were concerned about my low blood pressure. I am used to it but the surgeons were not and it had them very concerned and same with my low blood sugar problems followed by uncontrolled seizures that don't respond to normal therapy-medications. Of course this is all caused from my unique medical condition-Gastroparesis & connected problems.
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!
FOR CRYING OUT LOUD! YES. IT DID HAPPEN.
Me-So far this is a bust and my blood pressure is low as heck which already had them scared running for the hills. :-0
Eric-Are you serious? What do you mean running for the hills? They are scared?
Eric-Gees. How low is it?
Me-78/53
Eric-Wow. That is low.
Me-First doctor so far is showing various signs of concern. The more they go over my prior medical history and surgical reports the worse it gets.
Eric-So they might now change their mind?
Me-Yep.
Me-It's like a song, Low blood pressure, low blood sugar, seizures and GP, OH MY!
Eric-This doctor makes 19 on the list of specialists who are treating you but I wonder if the disbelief might be a sign of bad news?
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.
The last 40 minutes of the appointment we went over prior tests, surgeries and also support from family or from some-lack of. We also went over the amazing care my current 17 specialists have provided for me over the years. The surgeon commended all my doctors for doing an outstanding job including my Gastroenterologist who has continued to go above and beyond for me.
I couldn't agree with her more!
At this point my Gastroenterologist was hoping the colon could still be removed and had started my first steps towards preparing for surgery however it is out of the question. I am now given a life sentence living on surgical/colonoscopy bowel prep weekly and the inevitable of my demise. Who knows in the end which will get me first whether it be my heart stopping due to the low blood pressure or a sudden internal blood vessel busting or as expected by most a bowel perforation. Not a good thing to look forward to but its the real deal for me and now I must get my brain around this new chapter at the end of my life. I am lucky to have so far beat the odds but the weekly Drano or as some call it, "acid" might help me to stay out of trouble and becoming toxic however at the same time it isn't doing the job like it used to because my intestines are getting much worse. The bandaid is running out of strength. The doctors were shocked I wasn't tired all the time or constantly napping during the day due to what my body is going through right now on a daily basis. Honestly as I told them, "I don't know how I do it. but I do." They told me of numerous complaints they get on a daily basis from patients having to do the bowel prep for a colonoscopy. "They are complaining of a once in a life time discomfort when you are doing it on a weekly basis and living it for the rest of your life. Maybe now when I tell them the story about you they will think twice about complaining." After 2.5 hours came to an end I met with another team member who went over the other two tests yet to be run but they know the drill...Why bother? Why not take that money and do something I enjoy. AMEN!
Not that it wasn't already a bad start to a very FREAKY FRIDAY but once we left the building we were finally greeted by the eery clouds that quickly turned into 70 mph winds. Yes, it was a no-end day of bad news. I didn't see Dorothy or Toto but we did see on the way back home the nearest Lowe's to buy a tarp and boards for the exposed side of the house where the drains have yet to be finished. Instead what we found once we got home was a heck of a mess where the winds blew the existing boards all over the place, tarps thrown everywhere and tree limbs scattered through out the yard. Hey, at least it helped to take our mind off of everything.
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.
WOW-NEAT!
Eric was surprised I found it heads up in the new flowerbed. I always believed in signs from above. Maybe the Angels are telling me they still have my back and they will help me during this last chapter of my life. Maybe I won't have to suffer the rest of the way but instead find some peace within. After doing some additional cleaning on the old coin I now call it my peace of "Luck" and closely keep it by my side.
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!!
d'oh
After getting home around 4:15am we were greeted by Littleblue and Oreo followed by some very bad kitties. Rule #1-NEVER fill both food bowls all the way to the top no matter how long you are going to be gone. Pumpkin the "Alpha" kitty decided to gorge himself so the other kitties couldn't get any food then ended up with a MASSIVE angry stomach and intestines. There was trails of puke and poo through out the house greeting us which turned into an hour clean up. GEES! Once we both sat down it was almost 5:30am and I was getting delirious from being so exhausted. We both literally laughed ourselves to sleep. Hahahaha!
Forget treatment this afternoon and forget treatment this evening. I don't want to end up back at the hospital so this time I listened to my gut and put the Hell-In-A-Jug to the side for the next 24 hours. Hopefully I will be able to do it tomorrow but only time will tell. More like my body will tell me when its OK. This is typical of the hellish treatment because you never know when it is or isn't safe.
After taking our day trip Eric now wants to save up for a bigger trip. WHO IS HE FOOLING?! I said, "Where? a larger mansion?" Hahahaha! I can't drive more than 1.5 hours. I can't sleep in a normal bad. I can't eat. I can't be in the heat for too long. Call me a "Gremlin" since we both have similar qualities and can only come out at night. Hahahaha! Eric said, "It was a good idea although I don't know how we would get there so even I have my GP denial moments." DITTO! Sadly he isn't alone because I know of some people who have known me for decades and they still sometimes don't "get it." Hahahahaha! Instead of heading to the beach we decided to once again bring the beach to us. Now not only do I have an adult sandbox on the back porch (darn neighbors recently cut all my shade but lets not go there again...) full of sand but we put all the seashells I have collected over the years from various parts of the coast around the flower beds and landscaping. 
PRICELESS! 
