Mood:
downNow Playing: Day 750-The Final Road To Survival
Yep, here comes the nasty heat, rain and humidity! What a way to start off the week. I better get out early today if I want to do anything outdoors before the rain moves in...
Once again I woke up with the shakes, chills and feeling dizzy. After taking my blood sugar its no wonder seeing I just can't get my blood out of the 60's range. There seems to be no end in site and it even has my doctors scratching their heads although we both know my Idiopathic Gastroparesis is to blame. When the fire mechanism is gone organs can't work at 100%. Chocolate used to be a favorite sweet of mine but lately even I have grown tired of it. Glucose tablets and gel? Same. They only provide me temporary relief. Its a struggle keeping on top of everything. A great example is I was suppose to run up so my doctor can check red cells and blood in my urine today but guess what? I forgot. AGAIN! It gets tiring so I totally understand how other GP'ers feel. Looks like its "Post It Note Time!" At least this way I won't be forgetting things. Important things.
Tomorrow is Drano day. This evening was round four of injections. I refuse to give up so quickly however if I don't see any results after this last box that will be it for this gal. "A" for effort.
Just because I am still trying the new medication it doesn't mean I can skip the Hell-In-A-Jug treatments. My doctors were hoping I wouldn't have to keep doing the treatments on a weekly basis however it doesn't look very promising for this new drug and me. Such as life. GP life.
Me and my friend-Caregiver have been having a very interesting time with the new EVP recorder. Last night we did three sessions in various parts of the house and in the backyard. During each session we had at least one clear response. Inside the house we see a pattern with questions being answered by the same female voice. I tend to think someone possibly could had passed away in the house years ago. When asked if they knew who I was their reply, "E RIC." Let's just say my friend was so startled by the response on the recorder that he sure didn't sleep very good last night. Hee,hee,hee,hee...At least they know who he is so its a good start! The bar area still remains the most active part of the house. I was never very good in school when it came to Science but I have been intrigued learning about this new technology and how it works with radio frequencies/earths natural energies.
This evening a few friends agreed to go back with us next month to the mansion in Indiana and challenge ourselves this time to make it through the night. Its going to be quite interesting to see what the EVP picks up but our minds are open and we are ready! The main suite downstairs which is the only room on that floor and the two double suites upstairs were open so you can only imagine who got stuck with the one by itself. Hahahahaha... We all can't wait to go back! It was a great time last year and I am sure it will be just as fun if not better the second time too!
lyrical
Today was the last day my friend-Caregiver had to work double duty and is looking forward to catching up on his sleep tonight. The rain finally moved out but it looks like summer-like temperatures with humidity will be back next week. I sure am not looking forward to more frequent Gastroparesis flare-ups and seizures due to the heat and sunlight. Looks like my tremors will be back sooner than later so I better catch up on the rest of the chores today! I have been doing my best to finish up the rest of the house cleaning but boy! do I lack the energy. Thank goodness once my friend got home from work later this afternoon he was nice enough to help me finish the last bedroom upstairs taking care of the wood walls and baseboards. Cleaning is soooooooo much easier doing it as a team!
In my unique situation I can take in glucose products as well candy but still find myself an hour later back down to low sugar levels with my blood. Seems I am far from alone. Surely one day soon someone can start piecing together the GP-low blood sugar connection. I know how frustrating it is for me so I can only imagine how it must be for other fellow GP'ers!
I got some wonderful news this evening from my dear friend John. He recently sent in his resume for a government job in Napa, California and got a response letter back over the weekend. He is super excited since it was always a dream of his to live out west. I am so happy for him and keeping my fingers crossed that he lands the position! Maybe sooner than later me and my friend can meet him a few states over in Nevada and he can visit us at our new home. You just never know what the future holds. Dreams can only come true when you make them your reality. Amen!
surprised
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 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 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?..
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.