Mood:
chillin'Now Playing: Day 807-The Final Road To Survival
I officially ran out of energy.
I literally was running on empty all day. "Trying" to keep a smile on my face while attempting a second day of fishing was extremely hard. My Dad decided to tag along today and must had brought the fish with him.
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.
One of my fellow clean-out buddies and dear GP friend had surgery yesterday. She has also been having a horrible time with her intestines which keep causing her obstructions. Since her main surgeon refused to listen by expressing her concerns that something wasn't quite right a second opinion provided answers and a new surgeon. I never believed in the gastric pacemaker and rightfully so after she contacted me this evening regarding surgery and what the surgeon and surgical team found going on inside her body. Another reminder is the seriousness of Gastroparesis and complications that exist over time once the condition progresses.
I am going to re-post what I sent the online Gastroparesis support group that I started over 7 years ago. I am now a firm believer against anything experimental and not FDA approved.
Group Post-I was never one who was "for" the gastric pacemaker seeing FDA refuses after over a decade to approve the device in use for Gastroparesis-nausea/vomiting. After hearing AMarie's experience and what her surgical team found out yesterday during her surgery proved that maybe they actually need to place a ban on this device.
I just hope everyone who has a gastric pacemaker demands routine check ups and if you ever have any symptoms or complications go with the gut. Don't take them lightly! AMarie is very lucky and fortunate to had a surgeon take a second look and actually find out what the gastric pacemaker was doing to her insides.
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
There are many GPer's who over the years have also had a gut their gastric pacemaker was making them feel worse. If this is the case and your surgeon will not remove the pacemaker then I highly suggest going over his/her head and getting a second opinion. Any clinic or surgeon who refuses to remove a gastric pacemaker by a patients request obviously is in my opinion using you as a guinea pig for some sort of research or perks-$$$. Gastroparesis patients are not guinea pigs. We are human beings.
It is extremely scary that AMarie had to go through hell and back to prove that these pacemakers are not FDA regulated for a good reason. They are dangerous. I am sending this post as a special notice because I know there are many in our group who have the gastric pacemaker or are in the process of getting one.
*Please remember there is no cure for Gastroparesis. There is currently no specific medication on the market for Gastroparesis. There are medications to help "possibly" ease one symptom or two however they are not Gastroparesis medications. A gastric pacemaker is an experimental device that could "possibly" ease some nausea or vomiting associated with Gastroparesis however it is not FDA approved. It is also not approved by most insurance companies because it is not an approved device. Sometimes with Gastroparesis "LESS" is truly "MORE." This means the more you place into a paralyzed GI tract via mouth or surgically implanted can actually cause further complications and problems. It is always an individual decision with each Gastroparesis patient however please make sure to carefully think things through no matter what plan of action your doctor or specialists suggest because we only have one body.
-Kimberly/Gastroparesis Awareness Campaign-Founder & Idiopathic GP patient
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! 
We have both been not only mentally but physically exhausted lately and since winding down from list after list of things to do it was the perfect time to get away for a day. "Day" meaning since I can't sleep on a mattress because it causes me severe intestinal pain there is no spending the night. I haven't been able to take a "normal" trip in over 8 years but instead have learned to compromise for day trips. I did get to sleep a bit early last night so I was more than ready around 12pm to get up, get dressed and hit the road! The mansion is only a little over an hour away so just enough time not to aggraviate my spine too much. Anything over 1.5 hours and the pain game begins. It was another hot and humid day but a good one for driving with the a/c on. We arrived a hour and 10 minutes later so plenty of time to check out our room and hit the local casino to see if Lady Luck was on our side. Let's just say, "She was!" 2 hours and almost $400.00 later we said, "Thank you Belterra resort and casino" then headed back to the mansion. Hahahaha!
The bed was huge and super comfy although instead of sitting on I wish I could had laid on it. This time we stayed in the only large suite on the main floor compared to our last stay upstairs in the three room suite. "Haunted suite" more like. I don't get too spooked or scared anymore. Gastroparesis can do that to a person over time because there is nothing scarier than a GP flair up or serious complications. AMEN. We brought our EVP recorder, video camera and a regular flash camera. 
Eric of course was a bit spooked out once we caught actual voices on the EVP recorder through out the mansion and an image of a robed person out near the gazebo behind the mansion. Since the mansion was built in the late 1800's its not too surprising to catch spirits still roaming the grounds, in fact the owners of the mansion are used to it. Seems others who have stayed through out the years agree after Eric read diary entrees from those who have stayed in the same suite.
Wow! we had been having some great weather and same with last night in the mid 70's "however" once I woke up this afternoon and let the dogs outside I just knew this was going to be a crazy day.
Once I let the fur kids in from the backyard five minutes later I heard Eric whisper, "Hey, come here real quietly!" As I came into the dining room I saw what appeared to be a large mountain lion or goat standing on top of the glass dining room table. What I quickly realized after taking a double look was Littleblue standing on top of the dining room table eating the rest of the cats can food. SAYYYYYYYYYY WHAT?!!!!!! Yes. It took me 10 second after picking up my jaw off the floor to ask her what the heck she was doing or more like thinking. WOW! This is a priceless photo and for those who ask, "Is she part Wolf?" I tend to think maybe "Yes" because its far from a small jump to get onto the table. I honestly didn't believe Eric the other day when he put the trash outside then came back into the house only to be greeted by Littleblue standing on top of the dining room table. 
Blame it on the extreme temperature changes or maybe even the upcoming full moon since she really might be part Wolf-Werewolf that is! Hahahahaha...
Let's just say the rest of our check out experience was sugar, spice and everything nice!
Eric got gifts from the fur kids and a new Cincinnati Reds #1 Dad shirt along with a few cards. He was happy as well to be able to sleep in today. The rain moved in early this morning so at least we won't have to do any outdoor watering to the flower beds. This is a day for the Dads to relax and take it easy. We had family over later this afternoon for a very nice visit then it was off for me to get some walking in before the sun started to set.
It also helps my stomach and intestinal pain due to my Idiopathic Gastroparesis. Its one crazy GP life that involves trying to do my best to keep moving and allowing gravity to help along the way. Some days I am so beat I have to literally push myself to walk but if I don't there is no sleeping. Hopefully I can make it two days in a row catching up on rest because my body can surely use it. 