Mood:
rushedNow Playing: Day 754-The Final Road To Survival
Looks like more rain is on the horizon so its going to be a very humid and wet weekend. Ugggg...This weather sure reminds me of being in Panama and visiting the rain forests. One trip in my 20's I will never forget along with many others happy memories. At least the roses and wildflowers in the front yard and around the landscaping are enjoying all this rain. This is the first year in quite awhile that the blooms on the rose bush are huge! My peach tree in the backyard is also doing quite well and looks like there could possibly be peaches to pick come mid June. Hope my new neighbors are ready! Homemade peach pie for all! YUMMY! Well, at least for those who can eat.
Today is Cuddles kitties 14th birthday. Littleblue's 4th birthday is next week. The fur gang are not only well taking care of but spoiled rotten! Hee,hee,hee,hee..
Its hard to believe they will all be 14 years old this year. Where did the time go? They are quite energetic and Bear kitty still has his "Crazy-Cat hour" which starts around midnight and continues till 2am. Thank goodness I am on VAMPIREEEE time due to my medical condition because if I was still able to work Mr. Bear kitty would have to find a different play time.
With the rain heading in for the weekend me and my friend-Caregiver made some quick decisions on how to temporarily hold off having flood problems once again in the basement. The last clean up was enough of a pain and with the weather channel showing quite a bit of rain it might be a great idea to temp fix the failing outside drain and basement wall. After going to Lowes then running a few other errands we came back home so my friend could begin doing some quick patch work. So far. So good! If all else fails at least we now have more than enough buckets and mops. Hahahaha! My neighbors are also getting ready for the rain by stocking up on old towels just in case the dirt that was put down around the house foundation doesn't work. Looks like both of us will be seeing lots of repairs starting early next week. THANK GOODNESS! Its been a real challenge on my patience but I must remember there are far greater things in my life to be worried about. Amen.
Since this is day 4-after treatment my insides are sending me warnings of a few bad days to come. It feels like I have huge 50 pound bags of sand around my stomach due to severe intestinal inflammation from the Hell-In-A-Jug treatment. Regardless of the pain I still did my best to keep going today because its far easier to sit around and complain then to get up and try to do something about it. My spine was kind enough to give me a small break this evening so I could use my treadmill. So maybe it didn't help but at least I tried. My fellow GP friend who is also playing guinea pig to the new injectable drug Relistor is starting to have a few "new" problems. At least she is getting some relief but when she isn't using the medication its right back to the same ole song and dance. I think her Gastroenterologist also meant well by trying her on the new drug but its clearly not meant for Gastroparesis/paralyzed intestines but more for those who have been taking opiates for a long period of time. Like years. Its also for those who are recovering drug addicts or patients who have other chronic medical problems and use pain medication. For Gastroparesis patients? Forget it! I still have yet to find any relief but continue to deal with far more frequent tremors that dance on the seizure border. Not that I don't already have them nor is this weather helping but thankfully I only have a month/trial left to try the medication. Looks like Drano & Slimfast now have something in common with me. Its a permanent way of life!
"I hate people who complain, “I need a nap”, “I need some caffeine, I have a headache”, “I have pms cramps”, or even better… “I have a cold… I am Ddddddyyyiing!”. These expressions need to be banned, because they do not adequately describe how you are feeling and they belittle what pain and sickness I may be feeling.
I hate that I know my doctors better than I know my friends and some of my family.
I hate walking around in public with a limp, or worse, a set of crutches, a cane or a wheelchair. I hate not being able to wear tall sexy shoes, because I can not walk in them. I hate trying to quickly think of the much cooler reason for having a cane, or wheelchair. I hate that I don’t know a cooler reason.
I hate never feeling good enough, quick enough, pretty enough, or just “enough”. I hate living up to other people’s expectations of what being sick is."
"This is who I am. Good days and bad. Sometimes, there will be days where I am the funny, cute girl that you just can’t believe is sick. Then another day or week later- I may be that really sick girl who used to be funny." -Christine Miserandino
happy
My dear friend John also had some GREAT news to share with me today! He not only got a letter back this past weekend from a government job he applied for two weeks ago but today was told he got the position. WOOHOA! John will now be living his dream in Napa, California and also starting a new chapter in his life. Add his beloved fur kid to sharing a new life out west too! He will be looking for a new home in the next few weeks then officially moving by the end of June. I am so, so, so happy for him! If anyone deserved some true happiness and positive changes in their life it is my dear friend John! That now makes it official as one of us starts heading out west this year so I better start looking a bit more seriously into Nevada because life waits for no one!
Health wise things remain the same. My kidneys are still filtering blood and red cells but only as expected. Everything else as a result from my Idiopathic Gastroparesis progressing remains the same. Not any better but not any worse. I have yet to get over this last Drano treatment so once again this evening it was back to trying the rest of the new injectable medication. My spine will always remain a problem when it comes to sitting and standing but with the travel season almost here I sure do wish I could take a longgggg vacation. Since I do better by keeping myself mobile and moving around maybe I could just walk to my next vacation destination. Hahahahaha!
One can still dream can't she?...
celebratory
Talking about some rain!! 4 inches of rain in less than 12 makes for one heck of a flood! History may have built this house but obviously they needed to add outside the walls a moat!!
THANKS TO MIKE, FRANK & DANIELLE FOR SUPPORTING THOSE IN NEED
down
Here we go...It's another treatment day! It was also another failed attempted trying the new injectable medication. Any good news since using it late last night? Nope. 
Since I didn't get up until later in the afternoon I got a late start with the ole Hell-In-A-Jug treatment. My friend-Caregiver had an appointment to drop off his car to get the oil changed and I had to pick up a few prescriptions before heading back home to take a shower before chugging Drano. This wasn't a particularly good treatment nor has it been anymore successful as the injectable medication so looks like this will be a very longggg night...Add to the mix none stop storms with hail and high winds that have just started moving into the area.
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.
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. 
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!