Mood:
surprisedNow Playing: Day 748-The Final Road To Survival
My 7am bedtime this morning might had just beaten my old record! YIKES! I had horrible insomnia due to that wonderful feeling of intestinal inflammation which makes GP patients feel like they can't breathe. Usually a diet carbonated drink helps but not this time. I even had to take a few short early morning walks to see if that would help but nada...The Drano aka Hell-In-A-Jug treatment side effects are starting to become a routine. The third day is when my insides become angry and flair up and since this is officially day 3 since my last treatment it now all makes perfect sense. Just when I start to feel better and get some relief I am once again back down for the count although anymore I just suck it up and deal the best I can with it. At least the tremors have finally calmed back down so its a start!
My friend-Caregiver has also been dragging today after working 24 hours straight. Once he got home the fur gang were so happy to see him that once he laid down on the recliner they quickly became his protectors. Hee,hee,hee,hee, it was too cute!
My other dear friend Kevin had a busy day of his own visiting the newest members of his family. He is now officially an Uncle times 2! Both of his Sister's had their babies within weeks apart. The family has welcomed a boy and a girl in which they couldn't be more delighted! It sure makes for a crowded house at his Mom's during the holidays since now there is a total of 6 Grandchildren. Thank you for sharing the cute photos of the newest members of your family and allowing me to be part of the celebration.
I must extend another huge "Thank YOU!" to Gary for making such a wonderful device and bringing a huge smile to my face this weekend! Although I am still learning all the features to the EVP recorder I have already made some fascinating contact with those I would had least expected. EVP stands for "Electronic Voice Phenomenon" intelligible voices found in recording media that have no known physical explanation. I started using mine two nights ago and let's just say one thing, "It works!" Its certainly not meant for folks who get spooked easily but for those like myself who have been blessed to know there is truly life after death they can finally connect with loved ones and put their voices to tape. My friend-Caregiver used to be one of the "skeptics" until he moved into my home. The old prohibition era bar and friendly ghosts have changed his mind on top of things that were caught on tape over the past few days. 
I was finally able to look into the history of the wall safe this evening only to find the company has been long gone for quite awhile and stopped making the safes right before World War II. Thank goodness for those who originally had the home 102 years ago and made sure to write down the safe combination while making a few extra copies in which one was left inside the safe. I have only used the safe once to make sure the combination worked but always found the entire basement bar area quite intriguing as well the old historical light fixtures and wallpaper. There is always a fun-party type of feeling in the basement. Maybe those who have passed on still come back to drink and gamble?..
This evening I decided to try using the EVP device in a few different locations through out the house. Later this evening I made a last second decision to use it outside while my friend was walking the fur kids. Since my dear neighbor who recently passed onto a better place still has his hand held radio towers up I didn't realize the extra energy it provided. That was until I played back the 1 minute 38 second recording that had us both dropping our jaws! In fact so far we have listened to the recording well over 10 times. When using a EVP device you must ask specific questions in hopes of allowing those who have passed on to communicate with you. I asked 6 random questions and got three specific intelligent responses with my neighbors voice. Luckily the device allows you to save the files to your computer in which I am hoping to learn this coming week. Maybe by sharing some of my recordings it will reassure others to know their loved ones are safe and sound in a wonderful place called "Heaven."
EVP Session:
Question#2-Do you still drive your car?
Response: Yes.
Question#4-Are you still using your hand held radio?
Response: No, which was then followed with a faint sigh...
Question#5-Are you in Heaven?
Response which was broken over four different frequencies: H-E-A-V-E-N
Me and my friend are using software to figure out if the last response is my neighbor or someone else responding to the question for him. The other two responses are distinctively my neighbors voice coming through the frequencies onto the recorder. Now that is INCREDIBLE!
happy
Since we both had energy after waking up to so much excitement we decided to start cleaning the house. This is day #2 since we were able to get a start on things yesterday evening. Keeping my mind busy and body moving always helps me with any stress. If there was any stress left over from yesterday it was quickly gone! I can't bend or stoop over anymore so things that were within eye view were assigned to me and my friend-Caregiver took care of everything else. It was a successful house cleaning day with only two rooms left for tomorrow. WOOHOA! We both agreed to never again let so much time go by from the last thorough house cleaning. Sure, I am very neat and tidy keeping the house in tip top shape when energy allows but its a totally different story cleaning from floor to ceiling and every little knickknack in the house. Thankfully after last years garage sale most of the knickknack's sold and what I kept isn't overwhelming. Less is truly more! 
Since getting a rude and alarming reality check yesterday regarding a family member contacting my physicians I decided to now arm myself. Literally! With an arm length stack of every single medical record through out the past eight years from every single one of my specialists. Mental evaluations? CHECK! Yep, got those too so next time whether its a sibling/family member or anyone else trying to throw the, "Its in your head" card or questioning my doctors care they will be hit with the "facts" and nope, its not in my head. Sorry to disappoint but if anyone believes those who tell others false information regarding the health of someone clearly hasn't seen the facts. My GES test which is a nuclear study that measures how fast food empties from the stomach stated in bold print, "Less than 2% of food emptied from the stomach. Severe Gastric Retention AKA (for those who don't understand medical terms) Severe Idiopathic Gastroparesis." That is just for starters! I also have reports showing anterior/posterior intestinal problems, liver problems, etc, etc, etc. I agree with my friend that making light of mental health conditions isn't funny seeing they have personally suffered from severe anxiety for years and guess what? Their digestive organs haven't shut down nor have they endured surgeries showing an interal mess with organs fused and stuck together. They also haven't lost nerve function with their organs due to anxiety. "Those who say digestive problems are caused from psychological conditions literally can not only scare but cause more mental stress on those who do suffer from psychological conditions." Amen.
bright
When it rains it pours! It literally rained so much last night the gutters on the left side of the house couldn't keep up. What I thought was the sound of water in the basement was actually water creeping into the window since the outside well was flooding. Nothing quite like putting on your rain gear at midnight in order to keep things from getting worse. Add: Fix the basement window to the list of repairs to be done early next week.
The #1 complaint I have heard most over the past eight years from many, many Gastroparesis patients and those who also suffer from nerve related or invisible chronic conditions is when family, friends or loved ones comment that they "believe" their condition is just in their head and they have a mental problem. The next worse thing is patients knowing they have factual medical proof that it isn't in their head and they do suffer from a real condition with real symptoms but regardless if they have a library of facts those same individuals who believe its just in your head don't care because they don't listen to you nor your physicians. So here I am once again after eight years having to defend myself from blood related family making accusations that I have a mental problem AKA "It's all in my head." This not only struck a cord with myself but quite a few people today. Now once again I am utterly ashamed and embarrassed having to apologize for a blood related individual making such horrible accusations. When people say things like this to others its terrible but when you say things like that to treating physicians it not only is disrespectful for the patient but makes the doctors wonder why you are questioning their care. Most doctors won't put up with it and they don't have to. I am just fortunate for having a strong team of specialists who are very upfront and honest with me. Rightfully so because anyone would want to know if their own blood related family member(s) believe they are not sick. An example of this also came from a dear friend of mine the other week who had to endure this same treatment from not one but two siblings. Her new motto: "If you don't believe I sick then you are not welcome in our home." Sadly when you expect family to be your soul source of support you then find out from others just the opposite.
Since my own specialists are willing to put a final lid to it they are more than happy to provide copies of any records I don't already have myself. This evening I began scanning the "facts" and sent those "facts" out to those who believe I just have constipation or mental issues AKA "It's all in my head." What I was told by some who are just looking out for my best interest and don't want to see me go through any more stress was, "That won't do any good....For whatever reason, they want to believe there's nothing physically wrong with you. Nothing is going to change that." These are people who work in the medical and legal field who have seen their fair share of "Its in your head" comments directed to patients and those who are sick." A few local friends challenged the mental issue and "Its in your head" comments by saying, "Then why do they think you drink that stuff twice a week? Your hair is falling out, your back and teeth are dissolving and its in your head? Oh that's right. *#@&@ knows EVERYTHING!!!!" "I guess since my Brother has Crohns we better run to his doctors and tell them behold we have a cure! Its just in his head!" This is of course after their own sibling had to endure numerous surgeries to untangle intestines with dead nerves and he also now has to do weekly cleanouts. A few other FYI's, "For some reason, they want to believe it's in your head. I do think I would distance myself because its not healthy even if you weren't sick. Specialists sure don't like people questioning them when they are the doctors who are treating the patient. Let the doctors be the doctors and keep your opinions to yourself." "You're not going to convince them of something they don't want to believe. I wouldn't even make any more efforts in their direction." My friend-Caregiver made it short and sweet since they have been witness to now three different occasions of such outlandish accusations, "They are not compassionate, and have no sense of reality and no respect for you or anyone that is sick. The mental part is only the real mental stress they cause you. You do better being sick then dealing with the constant stress and so far its proved it will never end until you finally take the steps to walk away. If they want to make things right they owe you more than a few apologies then need to seek counseling to know how to treat someone, anyone who is sick." 
Needless to say after having to resort getting copies of reports which are clear and precise "facts" I can't believe after eight years I am once again defending myself and my doctors. This has not only gotten out of hand but its becoming emotionally draining. As some said, "You have made more than your fair share of attempts trying to clear the air. Its time to move on because sick or healthy this is clearly not good to be around nor is it right to make light of mental health issues when people are suffering. You have been tested on a few occasions as copies of reports clearly show, "The patient does not display any psychological problems but does show signs of internal health issues-she is sick." I literally went to have an evaluation four years ago and realized back then I was also fighting to defend myself only to be told by a Psychiatrist that I clearly had no signs of any mental conditions but had something serious going on internally. Three months later I ended up having surgery and the truth was told. In order for others to never, ever question again if what I go through is in my head my own surgeons literally gave me live sheets of surgical photos showing the internal damage. As they both stated, "This is one of our top three worst surgeries and you were an internal walking time-bomb." I was lucky. Very lucky! How I survived even my surgeons don't know but God loves a fighter! Haven't I said that before? Why sure I have and those who want to dismiss the facts and blame real medical conditions including Gastroparesis and severe connected nerve damage problems to "Its just in your head" or some sort of mental condition will be served the real medical facts. I don't take someone saying I am not sick and just have a mental issue very lightly. I am highly embarrassed to know a blood related family member has been making such outlandish assumptions to my own specialists and jeopardizing my care but also has been announcing to the entire city that I am some kind of nut job. Obviously as many friends told me today, "I don't blame you now one bit for wanting to move the heck out of this state because all the constant bashing is enough for anyone to lose their identity because those who have caused you stress have made their new identity for you. Because of them people now view you as someone you definitely are not. Its not fair and it really gets to all of us. You have been through enough and maybe by moving out of state you can be YOU again."
cool
I slept HARD! Wow! Drano sure does knock every last bit of wind out of you! I don't even remember falling asleep but only faintly hearing my friend asking me a question. The next time I woke up it was 2pm as Littleblue was staring at me wanting to go outside. 
We decided to maybe start the new idea this weekend but as those with Gastroparesis also clearly understand, "One must plan for the day." This means the same day, not a week in advance because Gastroparesis is extremely unpredictable striking at any time, any day and any way possible. Thank goodness we are used to being spontaneous! Hey, maybe Sam our friendly downstairs bar ghost could watch the house and fur kid for us? Hee,hee,hee,hee...Why not see if Sam and his crew could possibly help do some cleaning after hours once the bar is shut down for the evening? At least now we have some faces for our friendly ghosts. As far as going downstairs at night to do some wash? FORGET IT! My friend refuses to go in the basement at night in fear of seeing Sam or other happy spirits at the bar. The friendly spirit encounters started the first day I moved into the house, over eight years ago to be exact. I walked downstairs to put something away and half way down the steps I saw a tall gentleman with a curled mustache, black and white stripped shirt on, vest and wiping his hands on what appeared to be a bar towel. He looked just as surprised to see me as I did seeing him. Once I said, "AHHH!" the gentleman's jaw dropped then POOF! he disappeared. Other things have happened upstairs and downstairs through out the years. I tend to firmly believe that during the prohibition period while this bar was being used for secret gambling and drinking that now on occasions the spirits still come back to reunite for one last drink and game of cards. All I know is every person who has ever went downstairs in the basement has either felt like someone was standing behind them or experienced the feeling of not being alone admist a group of people. I have recently captured quite a few photos of faces in the old bar mirror looking back at me. Its very fascinating!
d'oh
Nothing quite like waking up to the sounds of industrial lawnmowers at 9:15am. This of course was after not getting to sleep until 5:30am. Yes, once again its that wonderful time of the year. UGGGG! By the time I laid back down the darn phone started ringing. GEES! I thought I had the answering machine turned off but nope, it was still on and no, John doesn't live here. Hahahahaha! After broken sleep and two early morning wake up calls I didn't end up waking up until 3pm. My friend-Caregiver was already on his way back home from the dentist. I am so glad to see someone else actually having to get work done on their teeth for a change! Hahahaha! No cavities of course so he must had got off easy today because I have yet to walk out of my dentists office without a list of repairs that need to be done. 
I start off the day with a tall decaf cup of dynamite filled with motility medication then attempt half of a yogurt and sugar but now I need to find another type of sugar to reach for! The GP diet game never ends. After eight years I still have to continue changing things up but at least one thing always does well for me: Slimfast. 
chillin'
Once again life comes calling but this time in the form of a leak! We had quite a bit of rain the other day. It more like a fast monsoon rain while at the same time the back bedroom ceiling started to leak. Much like last week when my car wouldn't start I once again decided not to panic seeing its just water and a ceiling although thank goodness for having an older home and old plaster walls that can handle the weight of water! Honestly the worse case scenario ran through my mind as I expected the cracks in the ceiling to finally break free and come down with the water. Back in the day I would had used all of my energy freaking out but this time once again I took a step back and resorted to solving the problem not creating new ones. I had my friend-Caregiver turn the water off in the downstairs bathroom but the water still kept leaking through the cracks in the ceiling. After realizing just because the upstairs toilet might not match up to where the downstairs was leaking doesn't mean with an old house there couldn't be an old copper pipe. I next decided to give it a try and had my friend go upstairs and turn the water off to the other toilet and PRESTO! the water stopped leaking. WHEW! 
So its already been an interesting start to the week and this is just Monday! EEK! I finally was able to make the call regarding the new drug my Gastroenterologist has me trying. What it doesn't do for me is actually "work." So far what I have learned from the manufacturer is their new medication isn't really meant for severe bowel dysmotility where nerves aren't just damaged but are dead. Much like many other drugs on the market it takes some sort of nerve fire, function and motility to allow the medication to work. I don't have either so instead of getting relief as the new drug clearly states on the directions I get nothing more than annoying tremors, headaches, head fog and achy pain. Even Walgreen's pharmacy help line headquarters wasn't sure what to advise for me to do regarding continuing the medication. So...You know what tomorrow will be don't you? 
The reactions from others would have many thinking they just saw Michael Jackson walking on the trails! Nah, it doesn't bother me what others think or say. I live for me not for what others might perceive in their mind. Every one has a right to his or her own opinions even if they are clueless in regards to your own personal medical battles.
I got some wonderful photos through out the day from fellow GP friends sharing with me life's moments. Its great to be part of the GP family and also thank you for allowing me to be part of yours!
chatty
If you ask the fur gang all this cool weather sure makes for great sleeping! Pumpkin has even been buddying up with Oreo lately but only because Oreo has been so tired that he hasn't noticed Pumpkin sneaking a spot on his huge bed. Hahaha!
If you think that looks odd just imagine the looks on our faces when we saw a huge Crane standing near the lake looking for fish. The last time I saw a Crane was in Florida so clearly this is one confused bird however seagulls have been making their way up north the past few years as well since Mother Nature is even confused when it comes to seasons.
Its the little things that you far more appreciate when life hands you changes on a constant basis. Two hours to have fun might not seem like a lot of time or worth venturing out to some but to me I cherish any time I can get a break and change of scenery stepping away if only for a moment from my GP life. Round two of self injecting went a little easier although I almost got the needle stuck and the burn that followed shows me it might take a few more tries to get a routine down. If this next dose doesn't work my Pharmacist needs for me to call the advanced pharmaceutical help desk so the drug manufacturer can let me know if its worth me continuing the medication. I am coming close to my next Hell-In-A-Jug treatment in a few days so something will have to give whether it be trying this new drug again or accepting the hard facts that for now the only thing to help keep me from getting into trouble/toxic is the ole Drano.
spacey
You know the story...All good things must come to an end which is why I enjoy my good days because they are slowly becoming few and far between. I have also been humbled more than just a few times over the past two weeks so might as well add another onto the list when I went head to head with my first round of Relistor. 
This new drug is called, "Relistor" or more like "RealistSCAREtor!" Hahahahahaha! Not funny while taking it or trying to give yourself an injection in the stomach. I am fortunate to be a very quick learner and although I made sure to read everything thoroughly I am still a hands on person. Give me the tools and I will learn. There are two boxes which are enough for two weeks worth of injections. Just think about it...$779.99 every two weeks to use this new drug. NUTS!! 
Round 1 of Relistor which honestly is made for those addicted to opiates or those who have taken opiates long term for other medical problems and have become severely constipated in which laxatives are not enough-FAILED. Was this new drug made for the rare, elite Gastroparesis patients who lost all nerve function with their intestines? So far my gut says, "NO."
happy
After another ER visit last month my Gastroenterologist suggested I try self-injections using a new drug that just came out on the market. Since my intestines don't work due to nerve damage any new medication that comes out on the market is worth a shot! (No pun intended) Of course my GI doctor had to type up the typical medical necessity and drug manufacturer letters so it took a bit longer than expected but my new medication arrived today. I am used to taking medication orally not via self-injection so its time once again to learn something new. Life is a lesson to be learned and pretty soon my wisdom will out number my age. My friend-Caregiver went to pick everything up and my doctor's assistant mailed me a book/manual on how to use the new medication and sent me a card good for one month free minus my insurance deductible. Honestly trying any new drug that just came out on the market is just as scary as buying a new car just released to the public because there will always be unforeseen problems. This holds very true for new medication since most drugs are now used for not just their original purpose but other health problems. Once he got home with the huge bag of medication I didn't want to read anything because I wanted to enjoy the nice day and not fill my brain with unnecessary stress. 
The only shocker was the price of this injectable drug $779.99!!! Thank goodness for insurance since my out of pocket part was only $20.00. WHEW! Its outrageous the price of prescription drugs and honestly unless you have insurance who could ever afford taking this medication? 
I am also hoping to get Oreo and Littleblue out a bit more this spring and early summer. They love going to the park but it can sometimes be a learning experience with all the other fur kids being around. With it being such a nice day outside as expected the park was filled with walkers while others were biking, kayaking and fishing. There were four beautiful white ducks all swimming together and very friendly since I am sure they get fed plenty of food from people visiting the park. From a nice scenic view of the lake came a group of young teenagers throwing rocks near the ducks. Since the ducks were so used to people I had a gut they were aiming not at the water but the feathered creatures. My friend-Caregiver thought the same until one of the teens came a few inches from hitting one of the ducks in the head with a large rock. Of course my Motherly instincts kicked in and I am not one to just stand back and not say anything so I quickly yelled, "What are you doing?" The four teenage boys looked shocked to see someone actually saying anything since there were lots of people fishing with their children just sitting there not saying a word as they were trying to hit the ducks with rocks. "Don't throw rocks at the ducks. Do you realize you can't do that in a park?" They quickly turned around as one pointed at the other placing the blame although I was one step ahead and saw them all. Let's just say I fear nothing and no one in life. Gastroparesis can do that to you and if you were weak before getting sick Gastroparesis will quickly turn you into one strong human being. AMEN! Regardless if I have children or not adults should be adults and take action and responsibility to correct children who are misbehaving. If we weren't walking past them I am sure they would had seriously injured one of the ducks who weren't doing a thing but enjoying being fed by the public. Since the Park Rangers were nearby the teenagers would had gotten more than just a verbal scolding, more like a trip some where and not around the park. Hahahaha! Since my friend-Caregiver works at the jail and is a county Sheriff he is used to dealing with those who start off as out of control teenagers who quickly become troubled adults. Not me. I would rather stop it before the behavior escalates. Sadly it took saying something for other adults who were just sitting there to respond. Some even had young children by their side who were watching these teenagers try to harm the ducks. Just imagine what they do away from the park! Sad to see as my friend-Caregiver said, "I will see them down at the jail in a few years due to not being properly brought up by their parents." Sadly I had to agree but if anything by not being silent and once again speaking up it might change the way those around the lake react next time when witnessing inappropriate behavior. 
The ducks at least swam away safe and sound while the teenagers walked away as expected mumbling under their breath. Hee,hee,hee,hee...If you don't think it feels good to make a positive impact on others and the world then maybe you need to try it yourself one day. 