Mood:
don't askNow Playing: Day 818-The Final Road To Survival
Stress.
What most don't understand about the ramifications of stress is the consequences it can leave on a fragile body. Ask my insides just what stress can do after getting only four hours of sleep from family causing more unnecessary stress then having sugar levels spike within a short time. We let things go until my sugar readings kept getting higher into the 170's along with feeling dizzy and the sweats. My doctors have already warned me on numerous occasions to stay away from any stress because it can unravel the hard work they are doing to keep me out of trouble. I guess it takes having just one organ act up to actual heed the warnings. Eric also got a first hand look today at what stress can do to a body that is already fighting enough battles.
After a sleepless-night, long afternoon getting checked out and finally having doctors sit down not "asking" but telling me "The stress will have to stop and those causing stress will need to stay out of your life before the stress ends up becoming your demise," we came home a heck of a lot smarter and wiser. Eric of course had a few other family battles to attend while I layed down on the couch to finally rest. Needless to say I am B E A T! I slept until 11:45pm and here I am right back up again. Instead of only checking my blood sugar once a day I will now need to check it three times a day. My doctors are always concerned when my body throws out of no where a new symptom. Prior medical records show a minimum warning when one of my organs stop working. I need my pancreas in order to survive so I take this "NO stress" warning EXTREMELY seriously. Eric has grown tired of the relentless stress and rightfully so which has him also taking the necessary means to make it stop once and for all.
Maybe change in my life is inevitable and in order to change my outlook I need to change my scenery. Nevada might be coming sooner than later because a person's body can only handle so much stress and so far things in this city have yet to change nor the people who live here. 
not sure
Here comes the HOT HOT HOT weekend! Bring on the snow I say! Even the kitty gang must be thinking the same thing after waking up to find their holiday snowman cat nip toy next to my sandals. Hahahahaha! Littleblue and Bear kitty have been doing some bonding time during the day since its far too hot outdoors to play in the backyard. Eric gave Littleblue her bath this afternoon but instead maybe Littleblue was giving him a bath. She doesn't mind the bath however she likes drinking the water from the nozzle when you are trying to rinse her off. It typically takes until the next day for her undercoat to be completely dry. With this heat maybe we just need to let her run-dry outside.
chillin'
This is the first time since the monsoon rains in May that I was happy to have the sound of rain wake me up. We not only need rain desperately but it also helps cool things off a bit outside. They are calling for 100+ degree days until Sunday. UGGGG! Its going to be a very long upcoming weekend and hopefully the heat and humidity won't put a halt to the gutter and drain work being done around the house. We really need to get things finished and finally wrapped up soon. VERY SOON!
I had an appointment with my doctor this afternoon in hopes of finding some sort of relief from the lung pressure due to my darn intestines. Depending on what type of symptoms need to be managed depends on which specialist I have to see in order to be treated. At least my doctor's office today is only around the corner from my house so we could also run some errands. My doctor was running an hour behind but he is worth the wait! He is very thorough and understanding to what I go through on a daily basis. Of course its difficult to treat my symptoms and sadly my doctors have to get very creative! They have a lot of responsibility on their shoulders handling my care but they always do their best with what medical technology has to offer. With Gastroparesis and my connected problems sadly it isn't much but at least they "try" and give 110%. We went over my surgeon appointment or what I like to call, "Dis-appointment." After my specialists have dug deeper into my past as an infant they are all getting a better understanding and clearer picture of a GI lifetime of problems. My doctor said, "Sometimes the best surgeons in the world are those who know when not to perform surgery. You have now seen four surgeons and clinics who have went over your unique medical situation. Sadly surgery will not help you. I am not sure if it ever did but things continued to progress. At this point you are dealing with a huge problem, Gastroparesis & a toxic/mega colon. The colon is stretching and applying pressure so right now we need to focus on what we possibly can do to help but its not a promise." Reality is hard to face and so are the facts. For now my doctor has me taking a few new medications, inhalers and an emergency inhaler. He isn't sure how long I will have to continue taking them because with my body only time will tell. He was delighted to hear I got married and found someone who truly accepts me for "Me." He said, "Support is very important when you are battling an illness for the rest of your life. You only need one strong person to be by your side." We went over a few other tests then he got my prescriptions and other sample medication together for me to try in case the other drugs don't work.
Yesterday was BearKittys 14th birthday. Since we had company over and I was limited on energy we decided to instead celebrate this evening. Eric laughs at the gang seeing he said, "They sure do know when its their birthday. They act just like kids, even playing with their toys after the celebrating is done." Cuddles also got to enjoy Bear's new toys while Precious and Pumpkin helped finish off some can cat food. Oreo is the last to celebrate a birthday this year. He will turn 14 in December. Hopefully there will be many, many more birthday celebrations for all the fur gang to come!
on fire
This one heck of a HOT 4th of July! 98 degrees>no way! More like 108. You don't need to light any fireworks. All you need to do is stand outside and the heat will light them for you. GEES!
Well...it sounded good anyways.
The heat has not only zapped my limited energy but also Oreo's. He has been doing his fair share lately of lounging around the house. Littleblue only lasts around 5 minutes outside. This is going to be one crazy hot summer! The only time they got to wear their Independence day bandannas was indoors today. Littleblue has so much fur that it makes her way too hot. Oreo doesn't mind though, he likes to be dressed up. Hee,hee,hee,hee...
Since I only have two more treatment-free days left before I have to do it allllllllllllllllllll flippin over again I was determined as ever this evening to get out of the house! Tomorrow I see my doctor so they can start me on some strong meds to possibly help ease my intestines being so inflamed and putting pressure on my lungs. I can only handle so many times waking up not being able to breathe and same with during the day. We did make it up to the park this evening around 9pm however it was still super humid outside. Its tough being stuck in the house during the time of year when you are suppose to be enjoying outdoor activities. Its no wonder I love fall & winter because I finally get to be outdoors after being stuck inside half of the year. AMEN.
I do receive occasional letters and emails from those who "assume" I am hiding a secret bout of depression. Even more fascinating are those who "assume" my demise won't be Drano aka Hell-In-A-Jug, blood vessel rupture or bowel perforation but instead by the hands of this "assumed" depression. To quickly answer those letters and emails:
Toss. Turn. Toss. Turn. That is how my night of sleep sound goes and so does when you try to get back to sleep only to have the electricity turn off. 
Eric has been doing more than his fair share around the house including all the yard work. Its been way too hot for this gal so now Eric has taken over. The spring flowers that bloomed late this year finally need cut back so the wildflower seeds can start taking off. I assume due to the excessive heat some of the new flowerbeds aren't doing so great. Hopefully the rest of summer won't stay like this but I have a hunch we have only just begun. With the high humidity the mosquitoes have been quite a treat! Just ask Eric who was only outside for 2 hours and got over 11 mosquito bites. We use Deep Wood Off products however these must be SUPER mosquitoes this year! YIKES!!
Things are slowly getting worse and its not fun waking up in the middle of the night feeling like you are being choked. Worse is when it hits me out of no where through out the day. Today was one of them. For now they have me using a nebulizer to see if it might help until I see my Specialist Thursday to get put on stronger meds. I like to call them, "The GOOD STUFF!" 
With it being so hot and humid outdoors its been a challenge walking. I don't mind walking indoors but I prefer walking outside at the local park. Lately we have realized after 8:45pm is a good time to head to the park. This evening it was a bit cooler outside while making our way around the lake. Also since we now walk later in the evening the other wildlife are more active. We first saw a huge Raccoon then quickly followed by a family of Malard ducks with her 9 babies. They were too CUTE! They were also hungry which made feeding them tricky with other Malard ducks standing nearby. The parents stood close guard over their babies but boy! did they mean business if any other ducks took the bread that the babies were eating. One little baby even went after an adult who came too close to the others. Talking about a little feather spit-fire! Hee,hee,hee,hee.... It was a sight to see indeed!
The sweats and fever have continued on and off through out the day which leads me to believe either the treatment is playing with my immune system or visa versa. Regardless after contacting my Oncologist/Hematologist's assistant this afternoon it was strongly advised I keep my appointment for next week. My doctor needs to rescan and check my lymph nodes every three months and I am due so I guess there is no way getting out of this one. 
Part of not throwing in the towel just yet includes building onto my GP oasis here at home. Since the tidings of bad news last week its important to make my home as safe as possible. This also includes the air quality. We are on our way of wrapping up months of house repairs due to the May monsoon rains and floods so the next step this week is to make sure the mold is also finally under control. Since we added new dehumidifiers on all three levels we have also noticed less water in the machines which means drier air in the house and hopefully no mold. We had James and Josh from Advanced Air Technologies come to our home today to clean out all the main lines in our furnace, air ducts and vents. They also checked on any mold issues that might be hiding inside the air ducts that can't be seen with a naked eye. It took them almost three hours and after wards they showed us what was picked up through out the house using a high quality filtration machine and vacuum system. Let's just say having a home 102 years old means lots of dirt the machine picked up but luckily for them no ghosts! Hahahahaha... Well we didn't see any but that doesn't mean they didn't take any home with them. Hee,hee,hee... James and Josh did a great job and I am happy to say between the latest air quality tests, mold interventions and today's air duct, vent and furnace system cleaning we are finally free of any scary mold! WOOHOA!! Now that IS reason to celebrate!
Its been more than a few days since I was able to walk at our local park and feed the ducks and geese. Being stuck indoors most of the time is enough to drive anyone nuts so we decided to take the wheelchair and head there this evening. 8:45pm is a great time to walk at the park seeing the sun is starting to go down which means less sunlight and heat. There is also a nice breeze around the lake and less people to stare at the masked gal-me. I am still getting used to it and wheelchairs strangely draw less attention than masks. Not quite sure why that is? Usually children are mostly the ones who stare and do the double takes but this evening I found myself doing my own double take. I haven't bounced back completely from this last treatment so I didn't make it that far around the lake but once we started to head back to the parking lot I locked eyes with a young girl who was around 9 years old. She was in a large bike stroller which wasn't what caught my attention. It was what was in the back of the stroller that did. Her Mom was using the large bike stroller so she had enough room for her daughter and the oxygen tank. It was obvious she too suffered from a medical condition and disability. We both had something in common. We shared masks. As we passed one another we locked eyes. She smiled and I smiled back. It almost made me cry. Not because it was sad but because for once I felt excepted by a child who did understand. Her Angelic smile made my day and one I will never forget.
Since this treatment decided to play a harder internal game on my organs than last weeks I have been home sleeping most of the day away. This isn't normal for me because I usually have enough energy to at least keep busy the next day after treatment however this time it didn't happen. At least Eric set an alarm for every two hours to wake me up so I can take in fluids and not get dehydrated. Let's just say after 8.5 years my poor body is starting to get tired and that energy is wearing thin. I don't blame my Idiopathic Gastroparesis on anyone, in fact over the years my heart has grown 100x the size it used to be when it comes to helping others who also suffer from GP and other disabilities. I assume as my friend said this evening via text, "Its because you walk in the same shoes. You actually "GET IT" and what it feels like to suffer." Still on days like today its hard not to just throw in the towel. I struggle sometimes and it isn't easy when your body is down right tired but your mind is still fighting. 
sharp
There are quite a few specialists who have recently been able to pull prior records from decades ago. Even when I was a baby. Which came first? The chicken or the egg? No one is certain although I guess anyone can try to be Einstein in the confusing world of Gastroparesis. Tanya always said, "She has been given a bad deck of cards in life." It now seems they might had been handed to me at birth. The questions remain in the minds of more than 10 specialists now who have treated me over the past 8.5 years whether I suffered from lack of nerve development before I was even born?. Some questions will never be answered but many prior records are showing a sick infant with intestinal problems that then turned into a sick pre-adolescent with stomach problems. Could the Gastroparesis journey started way prior to 8.5 years ago? The bigger questions concerning my surgeons are the ones during visits to Children's hospital when I was a young child. Was there a surgeon back then who could had heeded the signs? The early warning of things that were to come? The inevitable? No one is certain but one thing they are almost certain of now is that this didn't just suddenly "happen." There were years of GI problems prior to my Idiopathic Gastroparesis diagnosis. 
I now dread this stuff because I REFUSE to allow it to be my final demise. We now make it a day full of Drano fun by decorating the jug. Anything for a good laugh because during treatment I will take all the laughs I can get! Eric decided to take another one for the clean-out team. WOOHOA FOR ERIC!! Who else would do this? UMMM....NO ONE I KNOW. Hahahahaha! Willingly anyways.... He did tell me later this evening, "NEVER AGAIN!" I guess the ole jug of salt water and chlorine was even a bit too much for him. If he can't handle a small glass he would never make it through what I do on a weekly basis. It sure made a believer out of him. Maybe it needs to make a believer out of a few other individuals I know too. Hmmmm?....
While the surgeon and doctor both took turns coming into the room I watched from the window dark eery clouds slowly creeping into the area. The appointment wasn't going any better. There isn't much you can tell me that is shocking. Sadly I have become a pro at taking bad news which might be a blessing because while taking one small step forward preparing for 3-step surgery today I took 10 steps back then it was a complete BUST! 
Well...it was. Between them running a few unexpected tests an hour visit turned into 2.5 hours. Not only that but after they took a month looking into my prior medical reports, surgical op reports, photos, specialists letters, etc I was told, "As colon surgeons we only do one extensive surgery like this in a year. Even the best colon surgeons in the world only do one extensive surgery a year. Sadly we can not perform any surgical procedure. We can not remove your colon due to extensive damage and progression of your Gastroparesis and connected problems." It might be a good thing I already expected the worst of the worst today. They went into full detail of the complications I am experiencing due to progression of my condition. Surgery wouldn't help me in fact they said, "Your electricity in your body is causing a host of problems. Your low blood pressure should be controlled by an increase of fluids and electrolytes however your intestines no longer work. Same with your low blood sugar, kidney dysfunction, seizures, etc." Of course they can run two tests that so far after 8.5 years I have "YET" to have done but it will not help the situation. It "MIGHT" provide more answers but it won't provide a cure nor any relief. The damage is done and now there is no turning back.
If there is any good to come out of this FREAKY FRIDAY it was finding an old coin laying right in the middle of the new flowerbed on the side of the house. It wasn't there yesterday so the winds must had blown it in however after research this evening I found out my coin literally did have wings! It was an old 1920 liberty dime in which liberty has wings. They call it Greek wings since it represents being a messenger of news. 
I need to do lots of walking and with the summer heat and humidity now in full swing its leaving me scrambling for indoor places to walk through out the day into the evening hours. This is the time I must get creative or I run the chance of bowel obstructions by not keeping gravity on my side. Sure, the Drano aka Hell-In-A-Jug works but it doesn't work all the time since my condition continues to progress. This evening we had to start finding indoor complexes where I could walk down the pain and inflammation. Crazy the things Gastroparesis patients have to do in order to stay out of trouble. I tend to think the summer months are the worst for all of us.
My friend John sent me an update on the beautiful weather they are having out in Napa, California. A cool, dry 80 degrees with variable light winds. Gees! Like I really needed to see that and now it only makes me yearn to move out west even faster. I would take the weather out there any day compared to this nasty heat. Better yet, maybe Alaska or even better the North Pole. 
"LOOK OUT SANTA! HERE WE COME!" Hee,hee,hee,hee... By the time it was 8pm the temperature was up to 104 degrees. I haven't seen any tumbleweed just yet but if this heat continues it won't be too much longer.
