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The Road Before & After Surgery
July 9, 2012
Change.
Mood:  bright
Now Playing: Day 820-The Final Road To Survival

Why thank you Mr. Deer and wildlife gang. I am sure the peaches were just TASTY as can be! Hee,hee,hee... The peach tree is now officially peach-less. The only ones who will be getting any homemade peach pie are the wildlife who either ate them or saved them for baking. Hahahaha! Eric was shocked because as of yesterday we at least had half of the peaches still left on the tree. This evening it was an official peach BUST. Oh well... Glad at least someone got to enjoy them and it gives me reason to "not" blow my liquid diet.

 This was "suppose" to be treatment day and by all means I had planned on starting it even earlier than usually however it wasn't high sugar that put things to a quick halt. It was once again relentless family stress. Send in the GP Island plane so this gal can start treatment! AMEN. A day that would had been filled with Hell-In-A-Jug instead was spent on a list of five to call in order to start the process of putting peace back into my life and walking away from those who continue to cause me harm. Eric has been doing a bit of his own behind the scenes and found a sense of relief knowing we might possibly soon enough see a light at the end of the tunnel. Funny isn't it when I should be focusing on my health but instead I must stand here holding onto walls that people have built to "try" and close me in. God sure does love a fighter and I won't be letting him down nor myself any time soon. A dear friend reminded me today that my health comes first and so does my happiness and if someone is causing me harm I need to just walk away. Great advice!

Since this was another beautiful and less hot/humid day we had additional work done on the new gutters. Hopefully the rain will hold off for a few more days so they can continue finishing things up. Its been a longgggggg time comin! The new wildflower beds have been taking off and we have all sorts of new colorful blooms. I haven't seen too many butterflies this year but maybe with the flowers starting to bloom we might start seeing more. Wildflowers also attract hummingbirds. BONUS! 

Once the sun started to set we got the car loaded up and headed to the park. The baby ducks are doing amazing and even have a few other older Malard babies who took them under their wings. The other four adult male white ducks have been hanging around them and even the injured female goose. It was nice to see they all accept one another. The female goose seems to be getting around a bit better although she still suffers from an injured leg due to people leaving fishing line around the park grounds. She must had gotten caught in it but we are hoping soon enough either the park Rangers get her help or she is able to slowly bite the rest of the line off her leg. She has to hop around but is doing the best she can while being injured. There has been quite a few times we have come across young kids throwing rocks or tormenting her. Call it a "SPECIAL DISABLED BOND" because although I might not be one of the wildlife I am still human and understand first hand what its like for people to torment and try to hurt you when you are already down. People should raise their children and start them off young on how to respect the wildlife, not try to hurt them. Eric says they need "Kid-Cops" because I would be a great one! I told him if they ever came up with such a thing I would be the FIRST in LINE! AMEN! I have policed more kids at the park than what I would like to say who are left unattended trying to harm wildlife while their parents who clearly don't know how to watch their kids nor maybe should had thought first about having any sit back and don't do a darn thing. Once I speak up I have yet to see anyone take over. Maybe I am a "Kid-Cop" already and just don't know it but all it takes is one time for the menacing kids to understand me and I get my point across. I don't take people tormenting people and I sure won't take people tormenting animals. You can't feel sorry for anyone young or old who gets bit due to their actions and sheer ignorance. People have a right to defend themselves when sick or injured and so do the animals. I sure won't be the first to offer assistance when we finally see someone get bit but I will be the first in line by saying, "I told you so."

Its been a very long and stressful day but glad to end it on a positive note. Eric said, "If this was the Planters company he would be a shell walking among all the nuts. Hahahahaha! OK. Now that was funny and sometimes the best medicine in life will always be laughter. AMEN.

 

Its finally time for me to close the doors of stress and walk away. I need to do everything in my power so I can refocus on my health and my life again...


Posted by GastroparesisAwarenessCampaignOrg. at 11:11 PM EDT
Updated: July 10, 2012 3:30 AM EDT
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July 8, 2012
Being "HONEST" With Yourself.
Mood:  sharp
Now Playing: Day 819-The Final Road To Survival

Here we are once again waiting to see how many fur babies Littleblue will be having this time around.... After her last heat she had 10 hedgehog puppies. So far she has 11 various stuffed animal fur babies and its only been two days! Hee,hee,hee,hee... No. We aren't talking real puppies but don't tell Littleblue that because if you ask her she will tell you otherwise. She is too cute and such a good Mommy to her stuffed animal fur babies. Very protective too!

Since my insides are still coming back down from the relentless stress brought on by family we decided to have a low-key day at home then take a walk later at the local park. Eric bought a few new Wii games to add to our collection. We finally got to play the game "Operation." Who would had thought I could actually do surgery? PRETEND surgery but regardless I was surprised I did so good and even won the game. WOOHOA! Now maybe if I play long enough I can be Wii surgeon certified and do my own operation. Hahahahaha! I can't "DENY" myself as my own surgeon can I? The game was one word: FUN!

I am now on a completely different diet until early next week so my doctors can make sure my pancreas isn't going against me. They are hoping yesterdays problems and rapid high sugar levels were due to stress. No one can blame any of my specialists for getting very frustrated with family who don't respect not only them as my treating doctors but also me-their patient. Its bizarre how family has been continuing to act even after being advised to refrain from causing me stress because it is deadly to my internal organs. I see it as one word:

DISRESPECTFUL.

Eric not only had to deal with family yesterday but after contacting family in regards to once again causing me stress he was met by a local officer who was called by family. What the family member didn't tell them was the entire story. Only one side. When the officer finally heard the other side and was given information by my specialist and that Eric is my spouse the officer instead shook his head in disbelief. He was shocked family would do such a thing. Honestly Eric wasn't but I am beyond embarrassed! Eric has tried over and over and over and over again to have family understand actions that lead to stress that they should not be partaking in but instead should be stepping up to the plate offering nothing but 110% support. Not stress. Seems they are too busy. I have heard the excuses so many times I lost track. Eric had even spoken to a family member on the phone giving them examples of the situations but instead with them receiving the stress that I am going through. The family member replied, "I wouldn't like it if it was me receiving the stress." The problem is family is now becoming a medical liability to my fragile health. I agree with my doctors that this will and must now stop. If I have to remove myself from the family who have zero respect for me nor could care less about their family member then it will be done. It has started today. I have enough on my plate to manage being sick and doing weekly treatments. My doctors have their hands full keeping my head above water without family trying to push me back down. Sorry for venting but that is what this blog is for and its fact. I am sure many can relate to family causing family harmful stress to those who are sick. Hopefully if anyone who is reading this and are one of those causing stress to a family member who is sick just remember you become a liability to their health.

We were suppose to get rain today but instead we got clouds and wind. The good part was the wind helped cool things down. We finally were also able to walk at the park later this evening to check up on the baby Malard and white duck. Once Eric pulled the car up to park I looked down by the lake and saw both of the baby ducks laying near the other ducks and geese. Isn't wildlife amazing that when babies are abandoned by their family others will take over and protect them? We were both beyond RELIEVED to see them being accepted and even better was when we went to feed them. They must had learned to eat bread from watching the adult ducks. Thank goodness they are doing really good and I can't wait to visit them again.

I am so glad they are calling for much cooler temperatures next week. This gal is ready for fall, winter & SNOW! We have been looking through so many house listings in Nevada that all the houses are starting to look the same. Hahahaha! One thing that has been missing is grass and allergies. Instead there is plenty of sand and I am OK with that seeing my immune system won't have to fight as hard. Same with stress. Hopefully that won't be following us out west when we move either. AMEN!

There is nothing more powerful when going through any chronic or terminally condition than a strong support system. Family should be there to lean on, not to bring you down. I have found out in less than 48 hours how fast stress from others can derail your health. If family can't respect my treating specialists or their family member than this family member will be bowing out. Things MUST change and it will start today with me.


Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT
Updated: July 9, 2012 3:46 AM EDT
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July 7, 2012
Changing Scenery.
Mood:  don't ask
Now 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.


Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT
Updated: July 8, 2012 2:33 AM EDT
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July 6, 2012
DOES IT EVER END?!!
Mood:  not sure
Now Playing: Day 817-The Final Road To Survival

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.

It wasn't until after 9pm this evening before we could do some walking outdoors. Its much cooler once the sun starts going down however the humidity is still terrible. First thing I saw once we got out of the car was the huge Crane that has her nest in the park. Eric thought maybe she had a baby next to her sitting near the rocks but once we got closer we both realized it wasn't a baby Crane but instead a baby Malard and white duck. A woman said they both followed her around the lake so she brought them near the other geese and ducks. The poor little guys were frightened and scared. Of course me being such a huge lover of the wildlife I was hoping maybe the Mom was around but she wasn't. It seems the two babies had become close buddies and even the baby Malard was cleaning his friend while Eric tried to hand feed them. We both felt horrible and Eric felt bad for leaving them. In my mind I was thinking if they can't eat yet and are abandoned how can we take them in and care for them until they get a bit older?.. Once we started walking they quickly following behind. I told Eric to walk towards the other adult Malard ducks to see if maybe one of them would go near the babies. Thankful after we walked away and the other ducks got curious they slowly embraced the babies. Once we came back from walking to check up on them it was getting late so did one last look making sure they were ok and hoped by tomorrow a female adult duck would take them both in as her own.

I can't help being such a huge fan of the wildlife and fur gang. I know first hand what its like feeling abandoned. I also know what its like feeling different. This evening after once again dealing with another round of family stress I also realized the unconditional love that comes from my own fur kids. People can be so heartless, cruel, mean and vindictive. The worse can come from your own blood. Sad but true. I had hoped some of my family members would finally come around and change their tune. My own specialists also had hoped for the best. I don't believe in words. I believe in actions over time that show when people want to change to make amends. Sadly late this evening I finally came to terms and realized there won't be another family vacation down south. There won't be any family reconciliations. Things haven't changed with some family members and it looks like it never will. I don't like putting some personal topics out in the open but its a way for me to vent. I also hope its a lesson learned for others to understand how family should not treat other family members. Life is short and when one soldier is down the others should be there to help lift them back up not push them back down. This blog is a way to defend myself from inappropriate behavior from others. Sadly the "others" only now seem to be family and has been for quite sometime. I will be the first to admit when I am in the wrong and I have been in the past. However, I will defend myself against hurtful actions and bad behavior. Just because someone is sick it doesn't make them weak.

Me and Eric are hoping to visit the baby ducks tomorrow and see them with a new family. I know how it feels to be kicked out of the group. It isn't fun but sometimes in life family doesn't always consist of blood. Family should be made up of those who truly love you.

“Keep in mind, hurting people often hurt other people as a result of their own pain. If somebody is rude and inconsiderate, you can almost be certain that they have some unresolved issues inside. They have some major problems, anger, resentment, or some heartache they are trying to cope with or overcome."   -Joel


Posted by GastroparesisAwarenessCampaignOrg. at 11:11 PM EDT
Updated: July 7, 2012 4:13 AM EDT
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July 5, 2012
Trying To Control Symptoms...
Mood:  chillin'
Now Playing: Day 816-The Final Road To Survival

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.

After my doctors appointment we ran a few errands then went home to give Oreo a bath. He wasn't too happy about it but behaved extremely well! Littleblue's turn will be tomorrow because with her hair it will take a lot longer than it did with Oreo. 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!

"Pets are not our whole life, but they make our lives whole."


Posted by GastroparesisAwarenessCampaignOrg. at 11:50 PM EDT
Updated: July 6, 2012 2:20 AM EDT
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July 4, 2012
HAPPY GP 4TH OF JULY!
Mood:  on fire
Now Playing: Day 815-The Final Road To Survival

WOWEEE~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!

Outdoor events for today? Ummm...NOT. Indoor low-key festivities done my way? Yes. This includes a game of 'Life' in which I might had gotten the defective game when I was born. Hahahahaha! At least our company who came over did great with the game. Even we didn't get high scores like they did last time we played. That is whats so great with Wii games. You can PRETEND! Next game we are going to try during treatment day this week will be the game of 'Operation.' This way I might be able to learn to perform my own surgery. Heck, I won't need to get denied time and time again getting my hopes up only to be let down. I can just learn to do my own Wii surgery! Hahahahaha! 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:

I have a team of over 18 specialists including those who know first hand that I don't have the genetic make up for depression. These same doctors have been treating me for over 8.5 years and we talk about everything. We have gotten so close they have become like family. Using the term, "Throwing in the towel" means I am rightfully so getting tired of the treatments and false hopes so I have to come up with my own game plan and to me "Throwing in the towel" means I am also tired of the non-stop medical frustrations. This doesn't mean I am depressed. If I was depressed I would had been for yearsssssssss....Also diagnosed over and over again for years.......I am thankful and blessed to have the genetics of a person who instead gets mad, frustrated and down right angry. This also puts me into the group of folks called, "Fighters." This is how I have over come the odds because I don't give up, give in, but instead I get angry and fight. Depression isn't something to take lightly, in fact I do know many people who fight depression on a daily basis. Its important to get tested and see a doctor if you start displaying the signs of depression.

So maybe I just went WAY off the topic of today which is about my GP 4th of July however I had to come clean by saying, "If you are looking for some sort of "Secret depression" you won't find it here." Instead you will find a "Firecracker & Fighter" this 4th of July called, "ME."


Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT
Updated: July 5, 2012 4:07 AM EDT
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July 3, 2012
The Drano Standoff!
Mood:  chillin'
Now Playing: Day 814-The Final Road To Survival

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.

DANG IT!

Actually it was 3 hours of no electric and seems the power outage affected a huge part of the city. Not a good day when its 97 degrees outside. The bad part was I wasn't able to get back to sleep. The good part is I got some non-electric chores finally finished around the house. My fingers and toes were also due for some love so they got a pedi & mani by window sunlight. Hahahaha! Since I am still doing the ole Drano standoff trying to get this last treatment down my paralyzed insides I don't have too much energy right now and sadly some things still have to be placed on hold. Hopefully by tomorrow I will start to feel a bit more bounced back.

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!!

Since they pulled the plug-literally on surgery removing this mega/toxic colon out of my body they now must move forward with a game plan to keep the swelling, irritation and pressure from my angry intestines off my lungs. 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!

This 4th of July will be the first year staying home. I won't be attending any outdoor functions because my tired body can't handle the heat. If anyone wants to visit they will have to come to me because this body won't be moving anywhere but inside my own home. It might be nice to have a relaxing Independence Day for a change. The fur gang won't mind a bit and at least Oreo will be less nervous this year when the evening fireworks begin as he rests in comfort with his Mom.

CHEERS TO A GP-FREE AND HAPPY 4TH OF JULY!


Posted by GastroparesisAwarenessCampaignOrg. at 11:39 PM EDT
Updated: July 4, 2012 3:05 AM EDT
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July 2, 2012
Building My GP Oasis...
Mood:  chillin'
Now Playing: Day 813-The Final Road To Survival

Instead of throwing in the towel I am starting to find ways to keep it. I won't say depression isn't trying to take over the reins in my life because its normal to go through emotions after last weeks news regarding my medical situation. I would love to just sleep the next week away however today I only got as far as sleeping an extra hour before the pain took over my brain. 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!

With any chronic or terminal medical condition its important when you are receiving any type of home treatments that the air in which you breathe in is safe. To me my home is now my GP oasis since I spend most of my time here and do weekly medical treatments. Its very important to be proactive by keeping my home a safe haven. I highly suggest other patients to also be proactive by having their homes inspected for possible hidden hazards once a year. (Did I just do another plug? I guess I did! Hahahahaha!)

After the house got a through cleaning we ran a few errands so I could take a breather. I was told by my doctor to step it up and try increasing my fluids and introduce at least a cup of yogurt into my diet once a day. I started the small cup of Dannon low fat yogurt once I got up and finally finished it this evening. 10 hours later. If you think that sounds bad it took me 3 days to finish a 12oz Bolthouse veggie drink because my intestines are so inflamed and narrowed. Since my insides are paralyzed I don't get the hunger pains like most people nor do I get thirsty so its important to set reminders through out the day. Even being watered down things lately are still getting stuck. I "tried" the watered down spinach dip and boy! did that NOT WORK! Instead Eric ate the rest for dinner. "A" for effort on my part. Maybe I will try it again later this week.

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.


Posted by GastroparesisAwarenessCampaignOrg. at 11:24 PM EDT
Updated: July 3, 2012 5:01 AM EDT
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July 1, 2012
Trying Not To Throw In The Towel...
Mood:  on fire
Now Playing: Day 812-The Final Road To Survival

Ahhhh.....The ocean. The sand. The sun...While my friend John is continuing to get acquainted with his new home out on the west coast in California I am still trying to let reality sink into my brain here in Ohio.

This weekend it seems there are a few of us doing the wicked intestinal treatments. Poor Jennifer is up to over 100 bottles of magnesium-citrate and I still have yet to keep track or remember what jug of liquid Drano aka Hell-In-A-Jug I am now on. Since each week it knocks me out for the count one of these days I pray someone out there comes up with a better solution like "IV Drano" so I can finally knock these jugs out of my life for good. AMEN!

We finally have been getting some rain although it does make the heat and humidity a lot worse. The grass and trees sure needed it since its been so dry. Instead of Eric having to take over watering the flower beds the past few days Mother Nature has done it for him. Unfortunately he won't get out of cutting the grass this coming week. We are hoping the drains finally get done this month. Then there will only be one project left for the house repairs. It seems like it is taking forever...

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.

We tried to catch up on some other shows Eric taped this evening but my GP won along with a high fever that soon followed. After a Tylenol, Smartwater and an icepack I am hoping to call it an early night. Wishful thinking...


Posted by GastroparesisAwarenessCampaignOrg. at 11:23 PM EDT
Updated: July 2, 2012 2:54 AM EDT
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June 30, 2012
Being REAL-istic...
Mood:  sharp
Now Playing: Day 811-The Final Road To Survival

Sometimes when you least expect it history makes a strange full circle.

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.

YIKES!

Now it seems that bad deck of cards could had most likely happened before I was even born. It sure has my surgeons who did my prior surgeries racking their brains because its rare to see Idiopathic Colonic Inertia-meaning the nerves in my colon and intestines stopped working not to mention my Idiopathic Gastroparesis which did the same to my stomach. Are they all connected? Yes. Now they are wondering just how much nerve function I ever had to start with?. Not to ponder on the past or drive one crazy to find answers that are not available because the sad part is things that could had been run as an infant are a little too late. Technology back then wasn't as advanced as it is now. This is why the medical testing equipment we now have is able to detect paralyzed organs-dsymotility. We could be here all day, evening and into the following day, weeks and months trying to piece the missing puzzle pieces of my unique medical mystery however it is what it is. "Que Sera Sera."

The sad part makes me wonder of other young children who start off a life of GI problems that will progress through out their lifetime unless things are caught early and intervention is made by a specialist. I would never want to see any child go through what I have nor would I wish it on my worst enemy and trust me, I have had some crappy things happen by some rude and inconsiderate people through out my lifetime. AMEN.

Today was of course Drano aka Hell-In-A-Jug day. 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?....

After careful "Hair-debate" this evening I decided July will be the month I will say farewell to the last of my locks. The bald spots on the side and back of my head is getting worse each week and I refuse to look like Count Dracula from Sesame Street. At least let me have a bit of dignity to choose my hair-less time. Hahahahaha! OK. So, maybe Count Dracula has less than I do but you get the point. If Charlize Theron can do it for a movie role then surely I can do it for the role called, "Life."

As I face the inevitable and end of life I don't consider it being pessimistic. Its called being a REAL-istic person when your insides are progressively going against you. We all make plans each day on how we live our lives but in the game of life there will come a time when we all need to make plans ending it. I am fortunate to have a fair-warning. I call it the past 4.5 years, "Defying the odds."

Que Sera Sera

Que Sera, Sera,
Whatever will be, will be
The future's not ours, to see
Que Sera, Sera
What will be, will be.


Posted by GastroparesisAwarenessCampaignOrg. at 11:43 PM EDT
Updated: July 2, 2012 1:52 AM EDT
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