Mood:
cheekyNow Playing: Day 716-The Final Road To Survival
Wow! We are going on the fourth month of the year 2012 and honestly I can't even keep my days straight anymore. Hahahahaha! I thought today was Monday and asked my friend-Caregiver once we got up mid afternoon if he got the mail yet. Ummm...Its Sunday not Monday. OOPS! My days just blend together anymore same with it being April 1st when I was just getting used to it being March.
Since the weather has been nice the past few months we have seen an over abundance of what I like to call the "unpredictable, relentless folks." Neighbors have been sharing their own stories of various escape routes while another neighbor actually put up a very long blind for their front door so the religious teams don't literally keep looking into their window to see if they are home. Hahahahaha! Others go into hiding then peek to see if the Bible team players have left their porch. Yes! this is crazy but starting to get annoying for everyone. This morning around 11am we had our own knock at the door. For crying out loud, not again! We just had two Mormon's this week, two Jehovah Witnesses last week and now they have come back again? I told my friend-Caregiver, "Don't open the door, this is nuts!" Of course once we got up around 3pm I opened the front door instead to find a proposal for houses on our street to be bought by a church around the corner.
ARE YOU SERIOUS?!!
Since when have you heard instead of churches helping those to stay or keep their homes are now trying to purchase or push them out? WOW! Just a shame how churches are becoming nothing more but outlandish businesses not caring for their members but instead about the almighty $$$$. Didn't I just blog about "Good VS Evil" the other day? Now we are all being put on high alert again hoping the not so warm and friendly church doesn't try to take property from those who have lived on the street for years. It was just three years ago the same church tried their darnedest to buy portions of residences backyards in order to put in more parking spots. They must had forgotten they already had enough spare land of their own to extend their parking lot. Once things had resolved and the church backed down it had already angered those who live the American dream by owning their home. Now three years later its all starting again but since the first attempted effort went way, way wrong they are now just "offering" to purchase homes.
WOW!
Instead of the old kids song, "This is the church, this is the steeple, open the doors see all of the people" we now literally will see all of the people if a parking lot gets placed in every ones backyard. YIKES! Takes the words, "Sunbathing in the nude" to an entirely different level. Hahahaha!
So in between preaching visitors when least expected popping up on a weekly basis around the neighborhood we now have another church wanting to build parking lots outside our backyards. Some neighbors have told us the best way to counteract the behavior of religion gone bad is:
#1-HIDE! Don't come out until the coast is clear!
#2-Large blinds. If you get enough advanced warning pull the string and walk away!
#3-Come to your door naked. Hahahahha! I also had to laugh on that one!
#4-Ask for their address. This way you can let them know you will also be visiting them all days and hours of the week with your own Bible and religious beliefs.
#5-The Best! Speak in your own language. Just make it up as you go but make no sense. Laugh out loud!!!!!!! Could you imagine the facial expressions? I can only imagine! LOVE IT!
I have cleaned up letters, note cards, pamphlets, etc over the past few months that now I might just get some Gastroparesis Awareness Campaign gear together and educate them on true suffering. Amen.
I got a few funny church signs from fellow friends that are actually taken from various churches around the great USA. Maybe those who do what you aren't suppose to do which clearly says in the Bible need to read these as an example.
I belong to two churches. One after today I will no longer be attending seeing I don't agree with trying to buy or oust families from their homes. The other church I belong to is the same one I was baptized at although sadly it is a bit too far from my home. I believe those who want to pray in groups its wonderful to be part of a church family (minus trying to monopolize your parking lot) and you can always pray at home. God doesn't judge whether you worship inside or outside a building.
This Easter me and my friend-Caregiver wanted to attend Sunday church service but between my unique sleep schedule due to my illness and his work schedule it will be touch and go. I am hoping to find a local church that instead offers Saturday afternoon services. The rest of Easter will include me, Drano and the comforts of home. Hey, it happens and life happens. Change is sometimes inevitable but you have to take it one GP day at a time!
This concludes my Sunday online blog service. We don't take offertory but do welcome candy donations on your way out. APRIL FOOLS!
Hee,hee,hee,hee,hee... 
d'oh
It's amazing that even I quickly forget in a blink of an eye that ummmm...MY GI TRACT DOESN'T WORK! DUH! Tell that to Uncle Ben who happens to be the most wicked Uncle I have ever come across! Three spoonfuls and that's all she wrote folks and if this box of rice looks huge next to this kid imagine how HUGE it feels right now in my stomach. UGGGG....
I won the "GAME OF LIFE!" WOOHOA! Its about the only game of life I am winning, hahahahahaha! If only our lives were as easy as the game huh? 
Oreo and Littleblue sure have been loving this weather and playing outside however things are about to once again change with more rain. GEES! Just when the ground was finally dry so looks like they will be taking a break from outdoor fun and instead have to be happy with short walks to the park across the street. Oreo is doing much, much better with his seizures. He still gets them from time to time so its important to keep stress at the house to a minimum. I think we both could really benefit from it! Amen.
A dear fellow GP friend of mine named Jennifer sent me a really, really funny and cute card about doctors today as well a beautiful bouquet of my favorite flower-sunflowers in various colors! Thank you so much Jennifer it was a huge surprise and you certainly had the right flower, love them! Its so nice to have my GP family and all their inspiration that helps to keep me motivated. Now I can wake up next to my couchbed and look at the colorful sunflowers and the best part is they smell great too!
sharp
I woke up around 2:30pm today feeling extremely dizzy and cold. This could only to me mean one thing. Either my blood pressure was once again running a bit too low or it is my blood sugar. I carefully got my leg up and moved it off the couch then stumbled into the kitchen to test my blood sugar level. Sure enough! way, way too low and no wonder I am feeling horrible. The sugar rush begins once again so between candy, glucose tablets and gel I was finally able to get my sugar level back up to a safer range.
We both came upon the most sweetest thing in the world walking around the park when an elderly couple was sitting on the park bench as the husband was reading a book to his wife. We both couldn't help but smile from ear to ear. Its rare moments like this in life when one realizes the small things that matter the most. In a world where you meet and see thousands of people it only takes one instant to truly touch your heart.
This one was perfect and is called, "Expect Miracles" along with a beautiful stone plaque to place near my Bible in the living room. Thank you so much Arline, you made my day!
Amen.
rushed
My doctor totally understood the concern with my kidneys not functioning properly although the key is I don't have any infections going on with my kidneys. The problem I have is once again with nerve damage which allows my organs much like my kidneys to function properly. After speaking to a few other specialists of mine the past few days I agreed with my doctor that there isn't anything they can do and I am fortunate everything that was found by accident on the catscan is in the "beginning stages." WHEW! They can't nor will anyone do any type of surgery. My friend-Caregiver said, "If they found a bullet inside you right now they still won't do surgery." Very, very true because my chances of coming out of the surgery room are very slim and recovering from surgery even worse. My doctors decided that right now I need to understand they can't repair damaged nerves that are causing my organs to not work properly so honestly whats the sense of adding another specialist? If I develop a kidney infection or infections that is a different story but even a Nephrologist can't restart damaged and dying nerves. 
In between leaving one doctors appointment and heading straight to another we stopped by the pharmacy to drop off my prescriptions. I also called my GYN-Surgeon and they scheduled a ultrasound for next week to look at my problem ovary. This is the same ovary they had horrible problems with during my last nightmare surgery. Will they do anything with the ovary even after more testing? 95%-No. It is important to my other specialists to get the scan done in order to keep them updated so they can all work together with my care and managing the pain? Yes. My Oncologist-Hematologist will be gathering all the information he needs and I will be seeing him also next week. I am glad to divide up all these doctor visits over a two week period seeing I am already mentally and physically tired! My other doctors appointment today went as expected. My friend-Caregiver even said on our way out of my doctors office that sometimes you just feel better confirming what you already know to be true. Story of my life! Hahahaha!
Today I found my silver lining once again among the clouds. Amen.
hug me
Its been a week since my spine decided to shift and POOF! things forever changed. This also means things have forever changed with what my life used to be like including normal daily activities. Forget that new bike to ride this spring and fall. Forget wearing all the cute spring and summer sandals with any sort of heel. Forget having a 'me' day playing my own manicurist. Forget putting on my own shoes without finding a creative way to put them on myself. Now taking a shower and shaving my legs is a huge feat! I was told by my Neurosurgeon/Neurologist that the damage to my spine is done. They can not help nor fix the problem. The numbness that started at the top of my left leg has extended to my knee. There are times I am finding myself having to pick my leg up from the nerves dying but guess what? Deal with it! I only say this because things are not going to change and either I cry and act like a big baby or suck it up and act like a big girl! I chose the latter of the two. Hahahahaha! My friend-Caregiver is even getting a bit creative in order to help me sleep on the couchbed and recliner. Since the spinal damage is now predominately worse on the left side I must hang my hip and left leg over the couch or chair in order to ease the sharp nerve pain. This involves using a step stool with two chairs for elevating my hip/leg or using a chair and tube socks tied to create a sling to rest my leg. Maybe we are onto our own self home medical equipment store! Hahahaha!
My Oncologist/Hematologist has the job of taking over my troubled lymph nodes-two different sets that are working against me which are connected and related to those who have Lymphoma/Leukemia. My other specialists will not touch this new problem area and rightfully so until my Oncologist/Hematologist passes my care back to them. Not that I don't blame them. Its called, "Liability." Most feel over 14 specialists is a lot or too many but after many years it is proof that Gastroparesis invades various organs as it continues its path of destruction. Each specialist has an organ that he/she manages and treats when symptoms arise. They all work as a team and today they worked once again very quickly as they exchange notes and stay on top of things. My Psychologist will also be helping to continue keeping my attitude in check and spirits high in order to not allow this new list of problems to suck me down a never ending hole. Amen.
New problems mean new challenges. The new diet has been tough and I was never one for yogurt so my friend-Caregiver picked up some new frozen yogurt flavors today. The masks are hard to get used to and I sometimes forget to put one on before I walk outside but keeping my immune system safe is a must! Same with the darn cane that is already hurting the palm of my hand. If I could have a house that is one level with an open floor plan and the washer/dryer upstairs things would also be a million times easier. Little things you realize are important but only after life changes and you are faced with a new set of medical rules.
blue
I am so so so so so so so so tired of the stress! 
sad
This surely seemed like a full moon night because luck was not on my side. They took me back within five minutes into a room and started an IV line and fluids. The nurse went over my medical history and prior surgeries. They said, "Boy, do you have some bad luck!" Hahahaha! No lie there! Once they took my vitals and six vials of blood the doctor came into the room. The pain is now on day five and he was very glad I came up to the hospital. The next part of the examination started to turn for the worst. I literally was shaking and trembling in the hospital bed. My friend-Caregiver now became WIDE AWAKE when I was told I will most likely end up in surgery today. It seems I have something really bad going wrong. Not only that but once the tests came back and my catscan all the years of family comparing my Idiopathic Gastroparesis to those with cancer literally got rammed down my throat. I always couldn't understand why people compared my condition to cancer. Not only is it a disgrace to me but the person I am being compared to because every medical condition is totally different. A midnight trip to the ER ended up going into the morning hours. I like to say it was the second worst experience since being diagnosed over the last seven years. The worst experience was after my last surgery when everything that could possibly go wrong went wrong. 
To some this isn't the place to do an apology but since there are so many people involved right now I wanted to personally apologize for everyones actions. Over the past four days I have been flagged regarding some disturbing behavior. I do understand those who are contacting me are very concerned that the stress will jeopardize my current condition as they are looking out for my best interest. Some feel it is their responsibility to watch my back as they continue showing their concern regarding actions by my family. I personally do not condone this behavior and completely understand every ones concerns. It is also concerning my specialists who work extremely hard keeping me out of trouble and alive. 
down
This is my kind of weather in the low to mid 60's! Now if I can just get my body to heal and the pain to ease up long enough to enjoy it. My friend-Caregiver finally put the last touches on the new gym equipment. Since he takes care of me its easier for him to work out at the house in case of any emergency or if I need help with something. 
Now the GP room is also a fitness room! WOOHOA! I sure do miss working out. I worked out for years up until I got sick. You either find a joy and passion in it or you will end up giving up and slacking off. For him its a great way to relieve stress and let me tell you he has been put through some relentless stress lately not by my condition but by the actions of others. 
Speaking of NOT GOOD...After talking to a few fellow GP'ers and friends of mine I told one, "If this pain doesn't start easing up soon since its now shifting to the front I am going to end up back at the hospital." I can take a very high tolerance of pain but for some reason my gut is screaming something again isn't quite right because the same pain is still lingering but now it hurts to even breathe in or stand up. With my friend-Caregiver at work right now this might become a very, very interesting evening. Only time will tell...
I didn't get much sleep last night and tonight will be no exception. I once again couldn't get comfortable. I can't do treatment because of the pressure placed on my lower spine due to all the damage. Try sitting down whether alone on a toilet seat and making 24 hour bathroom trips after treatment-NOT. As per my specialists instructions today, "We will have to watch, wait and see on how your body responses over the next 48 hours." If things get worse its right back to the local ER.
This isn't going to be a fun next four weeks dealing with spinal trauma on top of my normal GP problems but where there is a will there is a way. I consider the last few days of stress a minor set back. Hey, it happens because life does involve both good and bad days. Per my doctors suggestions, "You must fill your life with a good support system not those who only want to bring you down." My friend Kevin said it and said it best, "If a sibling refuses to treat you like a normal human being and can't offer support then you need to quit trying. Why would anyone take any sibling constantly bullying and belittling another sibling especially when they are fully aware they are sick is just ridiculous." He always told me to never allow my condition to make me weak because I have always been a strong person. Kevin remembers my days working and traveling while hiding my illness. He has seen my determination with the situation because I kept trying but as he said, "You wouldn't put up with foul behavior from friends or strangers so why put up with it from a sibling? Because they are family and we always give family more than a few chances but their chances are up. Its time to move on." 