Mood:
brightNow Playing: Day 828-The Final Road To Survival
"What most people don't understand is the flip-side of Gastroparesis. What goes on behind the scenes in the lives of patients."
Since starting the Gastroparesis Awareness Campaign over 7 years ago I have learned that accepting the truth can be the hardest part of living a Gastroparesis life. When I receive an email or letter regarding a loved one who has passed due to Gastroparesis complications it devastates me. No one should have to lose their life due to having an orphaned disease that lacks serious federal funding and research such as Gastroparesis. Patients should not have to suffer on a daily basis by the multitude of symptoms that occur with Gastroparesis. Patients should not have to suffer due to not having available medication made specifically for Gastroparesis.
Today I received another heart breaking email regarding someone losing a loved one due to Gastroparesis complications. This should never have to happen to anyone nor should supportive family have to sit back and watch their loved one suffer.
What most don't see is the other side of Gastroparesis. Most don't understand the severity of complications that can occur even without warning. They can also be life threatening. What most don't see is the multitude of patients who suffer from lack of support from family, friends and loved ones. This should never happen because we don't ask to be sick nor ask to be diagnosed with Gastroparesis. Why do patients have to sit back in silence suffering alone due to lack of support? This to me just doesn't make any sense. What most don't see is the amount of testing that every Gastroparesis patient must endure and face during the course of their condition. What most don't see is the financial burden and strain that is caused by Gastroparesis. What most don't see is the pain and suffering patients go through in order to keep food down and "possibly" being absorbed by paralyzed GI organs. What most don't understand is that Gastroparesis does progress over time. There are so many things on the other side of Gastroparesis that society fails to see because they fail to understand our unique condition. Over time most patients find themselves becoming a burden to not just family but also friends and loved ones. We lose our sense of being and our sense of hope. Thank God we have each other-Gastroparesis family made up of fellow Gastroparesis patients that consistently reach out and take the time to support one another.
No one should have to lose their life due to lack of research, answers and a cure. No one should have to scream for support and lose every aspect of their lives because of Gastroparesis. I hope those who read this blog and also suffer from Gastroparesis pass it on to family, friends and loved ones in hopes of providing further education on what lies on the flip-side of our condition. We shouldn't have to suffer in order to be heard.
It has been a day full of awakenings. I had two doctors appointments. Unfortunately there is nothing they can do to help control my seizures that are here to stay so the only thing I can do is take it one day at a time. I was also asked by one of my doctors today, "How are you doing since we out they can not do surgery?" My response, "I can't change the plate in front of me but when you have been battling and fighting the great fight for almost a decade you take the good with the bad." It hasn't been easy but God has a job for every one to do while here on Earth. I hope one day when I stand before him in Heaven I make him proud!
"If people have time and money to waste by getting elective cosmetic surgeries then they have the time to invest in Gastroparesis by raising Awareness and helping to save lives."
"I understand some procedures are necessary and God Bless those people but Vanity is a sin and when you reach the pearly gates and they don't recognize you, you will have some explaining to do !" -D 
down
I dealt with tremors for most of the day but thank goodness no after-seizures. I regained full use of my left side by 6pm just in time to play outside "Supervisor" while Eric planted the apple trees. He did a great job and they look sooooooooooo good! We had an empty part of the front yard that needed something and what it sure needed were some apple trees. Hopefully by next summer they will be twice the size if we don't have such a dry year. Eric was nice enough to finish all of the house chores and watering the flower beds outside. We now have over 14 different varieties of wildflowers starting to bloom. They really brighten things up! Even the new groundhog family get to enjoy them since their new home is near the wildflowers. Let's just hope they don't eat them. So far so good!
My seizure disorder started a little over four years ago. I tend to always get seizure-aura before the seizure starts but this time was different because I didn't get any warnings. My Neurologists call my seizures, "Complex seizures" same as with my Gastroparesis that also seems to be COMPLEX. My doctors have run numerous tests over the past four years and found my triggers which seem to be excessive light, flashing lights and bright lights. They have recently not only tried me on a few other new medications but adjusted the dosage but obviously they don't work due to the complexity of my seizures.The past two years they seem to occur the same time my Gastroparesis flairs up. Are they connected? Yes. This morning proved to my doctors once again there is a definite connection. 
Thankfully Eric was home and didn't leave yet for drill. Since I was in the process of standing up I didn't get the aura warning to lay down so the seizure knocked me back and locked my entire left side of my body. I suffered temporary memory loss which isn't the first time and although it can scare the crap out of anyone it sadly occurs following most seizures. Eric was very concerned because my left hand and foot were locked up and turned inward due to my joints being frozen from the seizure. Once my seizure stopped the after tremors lasted for 20 minutes and by that time I was mentally and physically EXHAUSTED! It was 7:30am before I was able to get back to sleep. Eric didn't get to sleep until 10am and also had to call his Commander to let them know what was going on. They are fully aware of my unique medical condition and felt it was important Eric stayed home to make sure I didn't have any after-seizures which can happen following a seizure and tremors. 
celebratory
I have always wanted an apple tree for the past seven years. Its hard to find apple trees and when I looked online last month it was too late in the season to order one. This afternoon I am happy to say we ironically stumbled across APPLE TREES! Not only did we buy one but instead bought two. Soon enough I will have enough wildlife animals around the property to call it my own personal little Zoo. Heeheeheehee... Mr. Groundhog is finally back with a new girlfriend living under the front porch. I have a feeling sooner or later we might see some baby Groundhogs. Eric said, "Wow! The male is HUGE! I have never been able to come this close to a Groundhog but they sure are cute." "The way things are going instead of buying a house out west we might end up with a farm. Hahahaha! I love animals because they will never leave you and always give unconditional love. DITTO TIMES 10!
Since tomorrow is Dranotini Sunday we decided to have a date-night this evening. It will do us both good to get out of the house for awhile! We tried to start the new tradition last month taking turns planning a night out each week but things got us side tracked and I was once again down for the count. Thank goodness I am spontaneous. You have to be living a Gastroparesis life. AMEN! Its been awhile since I was able to go out without hair extensions or wigs and it felt extremely liberating. I better do it now before its too late. Sometimes you just have to put what others say to the side and be YOURSELF. 
With all the house repairs going on Oreo has yet to catch up on his sleep. Littleblue doesn't help much since she is up most of the day and night rotating her stuffed animal fur babies. Hee,hee,hee,hee... Eric hasn't seen anything quite like it but does agree she sure is a great and protective Mom. Too bad most parents in the world aren't as protective of their own kids like Littleblue is with her fur babies.
We let him pick out the days activities which included dinner and games at Chuck E. Cheese. Since my last treatment is still trapped which makes me feel a bit foggy I got smart this time and brought along a magazine. Eric has a huge fear of the Teletubbies which is kinda ironic seeing the table we picked out seemed to be right next to them. The only problem was Eric didn't see them but I sure did. TOO FUNNY!
Little Erik had a great time playing all the games and watching Chuck E. Cheese perform on stage with the other characters. It was busy but not too crowded so we all got to enjoy playing a few game together until little Erik's energy was wiped out then we headed home. We all had a great time and it was nice to free my mind from all the stress that has been going on lately with family. AMEN!
Since a few close friends in the city told me I need to start calling them more often so they can share some laughs I did just that this morning. Like 2:30am. Hahahaha! OK. Now you all can't say I don't call when I am up because guess what? I was UP but the problem was one individual wasn't and instead of his phone ringer being off he accidentally left it on after falling asleep in his kids bed watching a movie. Talking about sharing a few laughs when he was completely out of it then freaked thinking he was late for work. Hahahaha! Maybe next time everyone will think twice about telling me to call them when I am up and can't sleep. At least we both got a huge kick out of it later this evening. I am hoping to be able to see my friends in the city a bit more often before making the big move out west. 
quizzical
Since the stress caused by family put a halt for two days with my treatment I now have to endure it one more time this weekend. Yesterdays treatment didn't work and its to no surprise when your insides are fighting two battles. This should be a clear example for me to finally GET IT and understand if family understood my condition they would had respected the hell I go through doing treatments and not added unnecessary stress. AMEN. Its OK though because here on out I won't have to worry about holding off on treatment and now maybe I can get back on a schedule. I did have an important appointment to have my lymph nodes rechecked by my Oncologist/Hematologist today "however" its like the domino effect. Stress=no treatment for two days=having to catch up on treatment=no sleep=doctor wants me to reschedule so I can rest. Crazy isn't it? Yes. It is.
chillin'
One of my best buddies in the city also got a bit inspired by me finally taking the bull by the horns that he too started on a new journey letting go of someone who hurt him and his Son in the past. He told me, "Like yourself it was a long time coming but when its the right time you just know." I am very proud of him and together we continue to support one another on our new life journey without the stress, without the constant harassment but instead with open eyes and a lot more wisdom! CHEERS TO THAT!! It takes time to heal when you are constantly being bullied by family and when its been going on for years it can also take years to recover. I sure hope my dear friend and his Son are in a much better place emotionally and in time they can be at peace again. 
If anything "good" came out of this Freddy Kruger nightmare is I am BLESSED to be alive because as stated by a health professional this afternoon, "The stress could had killed you." AMEN! Now for once I can go back to writing about life with Gastroparesis and my NEW LIFE flying solo with Eric, my fur kids and all my amazing, kind, compassionate, loving and supportive friends who have always been like family to me. Thank you to those who have always had my back and to God who made me who I am today, "A FIGHTER."
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.
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." 
sharp
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!
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.
