Mood:  d'oh

Nothing quite like doing the holiday countdown in between trying to figure out when to do the ole Drano treatments. I feel as if I have a Drano-Chess board, hahahaha! I was going to go ahead and do my next treatment Wednesday-tomorrow but I was kindly reminded Christmas Eve isn't until Saturday.

DUH ON ME!

OH sure! How the heck am I suppose to keep up with the holidays when I can barely keep up with what day we are on. Blame it on the Hell-In-A-Jug seeing once I am feeling well enough to get out of my jail-house I am playing catch up with the game called "LIFE." So after that little Christmas Eve reminder I am back to doing my next treatment Thursday. I figure this will give me enough time in order to be couchbed & bathroom bound for the next two days then hopefully feel better to attend candlelight service at church then visit my extended family-Dad's side. This does of course all depend on Mr. Gastroparesis seeing sometimes he rules the day. Also hour by hour and minute by minute.

I woke up this afternoon with a wonderful surprise! A few packages were waiting on the kitchen counter that my friend picked up at the post office for me after work. Remember...crazy Postal delivery driver who literally went POSTAL on my friend last month has to remain within five feet away from the front porch. Once I got up and brushed my teeth I opened the first package which was a lost holiday order that finally arrived! Now I have just two more orders out there in the great USA that I hope arrive before Christmas. The second package was full of goodies from my dear fellow GP friend KimAngel. I received many nice things from her including friendship bracelets, M&M ornament, Christmas cross, 2012 planner and a very pretty silver bible verse bracelet that I wore today. Thank you so much my dear friend! You made my day! I am so glad we have each other on this GP journey as well our other amazing GP friends. Amen.

Since me and my friend didn't get up until around 3:45pm we decided to just run a few errands then finish up walking around a local antique mall. I am a huge history buff! Its one thing to watch history movies or read about it in books but entirely different to see first hand all the momentum's from years ago. We only made it halfway through the mall yesterday so today we finished up where we left off. Seems there were quite a few people with the same idea since its another rainy, dreary day with the crazy weather. No snow yet but plenty of unwanted rain. I sure hope we at least see some normal winter weather before the heat and humidity is back again, UGGGG!

So what did I buy at the antique mall? Yesterday when we were walking through the isles and mind you there only around a handful of customers we were almost half way through when we both heard what sounded like a music box playing. We just finished walking through the same area where we heard the music. We both looked at each other in disbelief seeing no one was near us or around the area. Hmmmm....So we decided to walk towards the beautiful sound and came upon an old music box which was two sleeping owls perched on a tree limb with leaves resting as the music played. It was one of those older music boxes back in the day where you had a little metal piece you moved either left or right to stop/start the music. My friend was a little freaked out but I instantly felt drawn to this one little music box. After we left last night I told him that if we went back to finish walking the rest of the mall tomorrow I was going to buy the music box. It was only less than $10.00 but regardless for some reason I felt the importance to buy it and bring it home. Luckily it was still there! Once we finished looking around we brought it up to the register. Somehow it was a misplaced item. It didn't belong with the other estate items and it didn't have a proper home in the antique mall but they still sold it to me for the price marked.

So I guess to make a long story short the pair of Owls now have a new home next to my fireplace mantel. I told my friend if it plays music tonight on its own just tell them to please hold it down at least until we wake up, hahahaha! He easily freaks out on things like that but it isn't the first time I have seen or heard a music box play on its own. My dear departed Grandmother had bought me a music box for my 20th birthday. After her passing that same music box played on its own for over two weeks. Not only did I witness this remarkable thing but as well my ex did too! I also have her favorite recliner which is the one my friend sleeps on at night next to me after treatments. He wasn't aware that it was my Grandmother's until he told me and my Mom a few times in the middle of the night it would move on its own. He said, "I would wake up and look around but no one was there. I had no idea it was your Grandmother/Mother's favorite chair but now it makes perfect sense." He now knows not to worry when the chair moves on its own seeing its just my Grandma saying, "Hello." At least he doesn't pull the blanket over his head anymore, hahaha! Don't tell him I told you that little bit of info! Hahahaha!

Posted by GastroparesisAwarenessCampaignOrg. at 11:29 PM EST

Updated: December 21, 2011 5:27 AM EST

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Mood:  sharp

I have come to realize that in life you will never know the true meaning of suffering until you have suffered yourself.

It is now less than a week before Christmas and I am already finding myself stressed out. To me a peaceful holiday would be relaxing on the beach somewhere with a huge strawberry margarita! WHOAHOA! Know anyone who has a trip planned with some extra space in their luggage? If so give me a call! I am small enough, I will find a way to fit!

Well sure enough the blood work that was done by my doctor last week showed exactly what we both thought: Lack of absorption aka meaning my organs are not absorbing important vitamins and nutrients due to my paralyzed GI organs. No wonder my sugar and everything else is all out of whack! At least now as my doctor said, "We have all the proof!" Its official folks! There is no turning back with my hair loss! Not only am I going to do like the commercial says, "I'm going to wash that gray right outta my hair," but as well literally wash my hair out of my hair, hahahaha! Not sure how I can make light of a serious topic but sometimes you just need to find humor in bad situations. I came SUPER CLOSE to taking the ole hair sheers out and getting to business finding a shorter cut or literally finding my inner LadyGaga with wigs and all...  

Gastroparesis is just NUTS!

So for now I must still continue fighting to plug as many liquid vitamins, chewy gummy bear vitamins, meal supplement drinks and fruits/vegetables via my juicer machine all to find out it STILL ISN'T ENOUGH! GEES! The new formula in Slimfast doesn't help matters either seeing its so thick in consistency that I have to mix the bottle with half water and put it into another container just so I don't vomit everything right back up. It seems even Boost and Ensure went to plastic bottles and changed their formulas a bit. Sometimes with GP you just can't win.

This weekend I made it an important point to visit loved ones at the cemeteries and place down holiday flowers for Christmas. I have done this every year for as long as I can remember, even before I got sick and was diagnosed with Idiopathic Gastroparesis. What most people who don't have GP don't realize is all the changes we must make as patients to incorporate normal daily activities that most take for granted. Oh trust me, even with a case of puke bags and a huge heating pad in hand I would still had made it to the cemeteries. You should never forget those who are suffering and sick here on earth nor forget about them once they depart to a far better place in Heaven. After my visit Sunday placing flowers down for family and loved ones I looked around to see just way, way,way too many of those departed who had empty graves. There were even some with excessive over brush growth that you couldn't even make out if there was a grave there or not. It really made me very sad and sick to realize how selfish and self centered our society has truly become that we can't even take an hour out of our own lives to respect those who have parted.

One by one me and my friend placed down a cute arrangement with a single white bird of peace tied with a white glitter ribbon. For many loved ones it appeared I was the only one who had visited them for the holidays. Not all of them but half. I also visited a dear friend of mines Mother's grave who was such a inspiration in my life for years ago. It did appear however someone was recently there and left a beautiful arrangement of poinsettias. While we were walking around placing more flowers down I couldn't help but brush off leaves on some graves to reveal those who have passed recently or years prior but were somehow sadly forgotten. How can anyone forget a loved one? How can anyone not respect those who have parted?

When it is your time and you have passed on to a much better place called Heaven would you want to be forgotten and never visited? I don't.

I told a few people that same day, "If I am brushed away that quickly and forgotten after I have passed I will come back to haunt everyone who failed to take an hour each week out of their lives to visit me." Some of course laughed but I wasn't. I take those words very seriously as well seeing so many empty graves during the holidays. To me there is just absolutely no excuse someone can't take a time out of their lives to visit with family, friends or loved ones who are sick during the holidays and those who lost their own battle with a sickness and now rest in peace.

After visiting all the cemeteries and resting assure they will never be forgotten by me because I won't let that happen I decided to finish out the evening and carry on the holiday tradition. How you may ask? Visiting the local light displays and a beautiful manger scene. Christmas just isn't Christmas if I couldn't take a day to breath in the true meaning of the holidays. Its not about getting gifts. Its about giving a bit of yourself.

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST

Updated: December 20, 2011 4:24 AM EST

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Mood:  hug me

I received a text message and email today from one of my very close fellow GP friends aka clean out buddies. We have many things in common due to our unique and altered lives from Idiopathic Gastroparesis.

My friend did an interview for a local newspaper in Florida about her experience living with a rare medical condition as well the constant changes and hardship that come along with it. After reading the article-one of two that will be published over the next week my heart sank due to the constant stress not just living with Gastroparesis but as well the strain it places upon the patient and their family. Sadly I could relate with many important facts in the article and the financial draining it leaves the patient who only wants to live.

Woman fights hospital as she battles disease
By Lauren Ritchie

December 18, 2011
First of two parts.

AnnMarie Riehm's solid food for a recent week consisted of half a pancake.

She ordered two of them from Billy's Cafe in Tavares, a place that makes some very tasty pancakes. But in tiny, meticulously chewed bites, she could force down only part of one.
Never mind the glorious, sticky-sweet maple syrup sliding across her tongue, the low, contented hum of customers chatting over breakfast, the waitresses bustling to refill steaming coffee cups.

When the Tavares woman eats, food sits in a lump in her stomach until it rots and she vomits, or else she must visit the restroom dozens of times in a single day.

That's because the systems in her body whose job is to process food have stopped working. Her throat sometimes refuses to swallow. Her stomach is paralyzed — it no longer contracts to digest dinner and move it to the small intestine, which in turn doesn't do its job of absorbing nutrients and nourishing AnnMarie.

What irony that food, necessary for life, is but an unceasing torment for the 40-year-old registered nurse who holds a master's degree in health-systems administration.

And the torture does not end there. While she struggles with the physical side of her condition, AnnMarie also must fight for access to health care and worry about how to pay for it.

Last winter, AnnMarie repeatedly suffered potentially fatal bowel blockages because her lazy large intestine didn't work, so doctors took it out in April. They hoped its removal would give her relief from the pain and misery of her condition. "That's when the nightmare started," she said matter-of-factly.

Started? It gets worse? It does.

Today, AnnMarie stands 5 feet 9 and weighs 102 pounds. When she dropped to 95 pounds, doctors began feeding her intravenously. Still, she must eat a little at least once a week to keep her organs functioning.

AnnMarie has not worked since 2009, and her future is uncertain. Her days are consumed by her disease, called gastroparesis. Suddenly, her schedule revolves around a complicated web of doctor appointments, expensive trips to the pharmacy, frightening dashes to the emergency room, tiring trips to the grocery store, naps in a recliner and more doctor visits.

And looming ever-present in AnnMarie's mind is the sickening knowledge that she is out of money. That causes the gripping fear that she won't be able to find anyone to treat her. And it provides for frequent dunning from collection agencies and for pressure from Florida Hospital Waterman in Tavares to cover co-pays for upcoming procedures they don't consider life-or-death.

Take her most recent medical adventures. Her doctors in Tampa now suspect that her condition has caused a serious communication lapse between her lungs and her heart. The result might be that her heart enlarges over time, which can be fatal. So, they ordered a test to see what's up. For her, it is just one more wearisome test and one more bill to throw onto her mounting pile. Unlike most people who are unemployed, AnnMarie has health insurance. Her father has struggled since her unemployment benefits ended in June to keep up the monthly $800 premium for her. But she is also in debt because of $6,365.39 in co-payments for dozens of procedures, most of which is on her credit cards, continuing to accumulate interest charges. Now, nearly all her credit cards are maxed out, she already is paying Waterman $25 a month for previous bills of about $600 and her dad's income can't be stretched any more.

When a representative from patient financial services at Waterman called before her recent test and asked for a $15 co-pay, AnnMarie said she didn't have any more money. The representative threatened to cancel the test, adding that it wasn't medically necessary so the hospital didn't have to provide it, AnnMarie said. It was settled when the representative finally said she'd let it go this time. AnnMarie had the test Dec. 6.

"They make you feel horrible. I legitimately can't work," she said. "I can't focus on this other stuff. "I'm fighting for my life."

Carrie Fish, Waterman's chief operating officer, said some of AnnMarie's procedures aren't considered "medically necessary," so the hospital's policy requires her to pay her portion of the cost. "Florida Hospital Waterman extends the healing ministry of Christ to all,
regardless of their ability to pay" for medically necessary procedures, said Fish, who also is the hospital's senior vice president.

So, where is that hospital tax money that supposedly pays for charity care when it's needed?
On Wednesday, we'll take a look at AnnMarie's financial situation and her prospects for survival.

AnnMarie, I thank you for one the best and most honest stories written helping to get the importance out to the public about Gastroparesis and the struggles patients have to endure on a daily basis. Stand up and be very, very PROUD of you! I too have been recently placed in financial strains and put into a very difficult situation. My dear friend brought it to my attention last week that he has decided to put his house up for foreclosure in order to help me continue living in comfort with a roof over my head. I told him he need not do such a thing and some how I would still be ok but in response he said, "I did it because I don't want to see you suffer anymore with any unnecessary stress. I want to see you stay comfortable in your own home doing treatments. You don't need to be put through anymore stressful changes because your condition has put you through far enough. I want to see you and the fur kids happy and content in the place you call home." I am still in shock with his decision putting his own house on the line to help me with mine but thankful to know that God still puts good people in this world and Angels do walk among us. I won't have to move anymore nor the fur kids. We will still have a roof over us as a result of an amazing act of kindness from one amazing friend. Thank you Eric. I could never repay what you have done for me! For US. 

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST

Updated: December 19, 2011 2:19 AM EST

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Mood:  special

I woke up at 3pm to the cutest site! Littleblue and Oreo side by side watching over Mommy sleeping. They are indeed some amazing fur nurses aren't they? Of course the Hedgehog stuffed animal babies have arrived. All twelve of them. They were born we believe at 3:45pm, this is of course the time Littleblue decided to gather all her hedgehog stuffed animal puppies in a pile then placed them neatly on the couch. She is a very protective new Mommy! Heeheeheehee! Try to take one? FORGET IT! She might take your hand with it too, hahahaha! This is her third hedgehog litter and they usually grow large enough to be on their own again as stuffed animal hedgehogs in around two weeks.

I am still recovering from the ole Drano treatment with another one just around the corner. I finally also planned out the next week full of holiday activities hoping at least to accomplish half if not everything on the list. This evening I decided to make the traditional holiday goodies to take over to my Grandmothers tomorrow as well tidy up around the house. The more I keep moving after treatments the better off I will be and the less intestinal pain I will have to endure. At least I hope so this time around!

Once everything was finally finished I got situated on my couchbed and came across a story on CNN about a woman who is considered a holiday Angel to many in Michigan. The woman wishes to remain anonymous but I consider her a learning example for everyone! She recently lost her husband and wanted to perform the generous deeds in remembrance of him. She has paid off numerous lay away accounts at various Kmart stores for families who would otherwise not see a Christmas because they could not afford paying off their entire layaway. There were lay aways filled with clothes, toys, holiday decorations, etc. This woman took it upon herself to put joy in the hearts of many in honor of the love for her beloved husband. No one asked her to do it. No one asked her for money. No one asked her to think of anyone during this time of grieving in her own life. What she did for many families is something that we should all set an example by helping others in need and giving a little of ourselves during the holiday season and through out the year.

Indeed if God is passing out his wings tonight she will be first on his list! AMEN.

 Bay Area residents join holiday effort to pay down Kmart layaway accounts

It began last week in Grand Rapids, Mich., with a single act of generosity: A woman reportedly paid off the Kmart layaway accounts of several strangers.

As word spread, the phenomenon gathered strength, flowing outward from the Midwest, fueled by news accounts and social media. And this week, the great layaway wave rolled into the Bay Area, inspiring benevolence from people trying to make the holiday season a little less burdensome for fellow citizens whose wallets are light.

"We tell them it was Santa Claus coming in to pay off their layaway," Pawlik said. The donor, who wishes to remain anonymous, said in an email Friday that he learned about the Kmart layaway campaign Thursday night. "I couldn't sleep last night thinking about it and wanted to help," said the man, who identified himself only as someone who lives and works in Silicon Valley. "I do not want publicity, only to encourage others to pay it forward."

Kmart hasn't tallied how many accounts have been paid down across the country, but the number appears to be safely in the dozens -- and perhaps much higher. A spokesman said the company can barely keep track as fresh stories of altruism pop up in states from Florida and Pennsylvania to Oregon and Arizona.

The benefactors generally ask to help families who are squirreling away items for young children. They often pay a portion of the balance, usually all but a few dollars or cents so the layaway order stays in the store's system.

The good Samaritans seem to be visiting mainly Kmart stores, though a Wal-Mart spokesman said a few of its stores in Missouri and Illinois have seen some layaway accounts paid off.

Kmart is one of the few large discount stores that offer layaway year-round. Under the program, customers can make purchases but let the store hold onto their merchandise as they pay it off slowly over several weeks.

Kmart representatives say they did nothing to instigate the secret Santa's or spread word of the generosity. "It's definitely in the season of giving," said spokesman Tom Aiello. "It's not something we're actively promoting, but we love that our customers are helping other customers."

Three people had stopped by the layaway desk at the Kmart on Delaware Street in San Mateo by 3:30 p.m. Friday to make payments for people they'd never met. One of them was a young woman named Mary, who waited in line for 20 minutes to pay an account down from roughly $270 to $20. Mary, who didn't give her last name, had already visited the store on Veterans Boulevard in Redwood City and plunked down $150, erasing two layaway accounts almost entirely.

"I'm pretty lucky, so I just want to pay it forward," said Mary, who works for a San Mateo software company.

Sam Chatfield, a supervisor at the San Mateo store, got choked up while recalling her conversation with a customer whose account had been sliced from several hundred dollars to a single penny.

"I told her that the Christmas angel had paid her layaway," Chatfield said. "She started crying. It made me start crying."

Later this evening as I finished watching one of the all time holiday classic movies I said to myself, "Indeed it is a Wonderful Life!"

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 AM EST

Updated: December 19, 2011 1:21 AM EST

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Mood:  lazy

Time to do treatment! No, I can't hold it off another day. With Christmas only being a week away now I must plan out treatments around the holidays. Once again I am planning my life around a jug of liquid dynamite...

This weekend is full of holiday activities. Drano is also on that list-EVIL LIST. I decided to do like last year and space things out. I usually make various baked goods to take to my Grandmother's house the weekend before Christmas. Its a great time to visit minus the holiday hustle and bustle. I also place flowers at the local cemeteries in honor of family and loved ones who have passed away as they celebrate Christmas in Heaven. With the cemeteries being close to a few light displays I also go see them as well a local manger scene.

Like I said, "It's a busy week before Xmas!"

So...today I decided to just get the darn dreadful Hell-In-A-Jug treatment out of the way then plot the next one before Christmas Eve. Anymore its become a game of Drano chess! One wrong move and it ruins everything including any plans I had in advance. I refuse for this to be a Drano Xmas. Hahahaha! Ok, that did sound funny! I wonder if I could turn the jug into a fun mixed drink? Maybe make DranoTini's using the tasty flavor packets! How about sugar around the rim of the glass and maybe have a pineapple DranoTini or MMMMMMM...A lemon-lime Dranotini?

NOT!

At least for those who were naughty and over ate they can easily find themselves getting rapid relief in less than an hour! Hahahaha! My friend has passed on taking a glass for the team the last few treatments. The smell of it now makes him gag. He would never survive in my GP shoes. I don't know many who honestly would besides another fellow GP'er but even they refuse to be tortured by the ole Hell-In-A-Jug treatments.

My friend has been playing the lottery. Mega Millions to be exact. Last week he didn't get any numbers but tonight he won $5.00! Heck, that's a drop of gasoline, enough to go up the street and claim his winnings, hahaha! Nah! He's just going to put it towards next weeks drawing. You just never know...maybe one day he might win something big! He more than deserves it since he has been placing so much on the line as well doing many changes in his own life to help me with mine. Amen.

As far as the postal delivery driver who literally "WENT POSTAL" a few weeks ago she can no longer come within five feet of our front door. This might had been a great and safe idea to her Supervisors however to us the victims of her crazy rage it only creates more inconvenience. Now we must literally drive to the post office to get any packages that don't fit in the mailbox, GEES! They won't remove her from the route seeing with the post office in such horrible debt its only a matter of time before we don't get mail service. I see it in the very near future! Why waste money on mailing a bill when you can pay them for free online.

I still haven't been able to see my great nephew yet. Those in the house have been spreading different colds and flu's to each other. Every time I was going to go visit him I was warned ahead of time that someone else is sick. It is that time of the year but if all else fails at least I will be able to finally see him within the next week. He sure looks like a China doll doesn't he? Just look at all that hair! I remember having all that hair. Now I remember seeing it going down the drain each time I wash it! Hahahaha!

While I finish up a night in the bathroom I am sure Littleblue will be waiting for me on my couchbed. She is such a great foot warmer! Lately she likes to lay stretched out right next to me. So far I haven't turned over and landed on the floor yet but the way shes growing it will be sooner than later. We think shes coming close to having her "hedgehog babies." The last few days she has been gathering all the stuffed hedgehog animals. This always happens a month or so after her heat. If I don't get sleep tonight from my Drano I can guarantee a night being awake with squeaking hedgehogs and a flustered Mom named Littleblue. Heeheeheeheehee!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST

Updated: December 17, 2011 3:13 AM EST

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Mood:  d'oh

Hey Santa! Send us some snow!

I was beat last night and with all this rain I made it to sleep a bit earlier too! So maybe not by 11pm, hahaha! but instead 3am. Come on...my usual time is between 5-6am. I had a follow up appointment with my specialist today so I made sure to set my cell phone alarm so I didn't sleep the day away. My friend is off work the next few days and was nice enough to agree to go with me. He also had a few errands to run after my appointment.

Its typically the same ole song and GP dance. No matter what specialist I am always promised something 'new' to add on my already full plate. 99.9% of the time I am right on target with the news. It was no different this time around either. With over eight years of battling the great GP fight I feel like maybe I missed my calling years ago working in the medical field. I never thought I would be so intrigued in learning the mysteries of the human body. The constant research I do aids my doctors with my rare condition. It also never seizes to amaze them. Sometimes they just sit back and tell me, "You are smart. I don't need to explain things. You already figured it out." Sometimes its just nice to reconfirm what I already thought was going on.

Like today.

With a paralyzed GI tract theres bound to be numerous connected problems. I have yet to run into a fellow GP patient who only has stomach dsymotility. Some have at least two other problems associated with their Gastroparesis. However most have a list. Honestly there always seems to be something new going on with my Idiopathic Gastroparesis. There isn't anything anymore that can shock me. Once I got back into a room my doctor called me into their office. We went over everything including the problems with my kidneys, sugar and lack of absorption. Its important for me to understand which monster I am facing. Today I found out what I already knew since my gut never fails me. "Hypoglycemia, malabsorption and rapid flushing with my kidneys." This explains the constant need for sugar and the flairups that leave me in the bathroom all day. My hair has already taken a cruel beating over the past three years. We can no longer just blame the ole Hell-In-A-Jug seeing I personally decided to give myself a year break before only finding out I was one step away from double bowel obstruction. It was then around five months ago I was placed back on weekly treatments and now twice a week. Even during that year off Drano I was still experiencing hair loss.

Here's the final diagnosis...

We all have yeast in our bodies. Its normal. Whats NOT normal is when the body builds colonies of yeast due to damage intestines and weakened immune systems. Put me in that catagory. I don't absorb sugar properly. If any...barely. This has my internal organs even more confused and altered. I also have rapid flushing with my kidneys. Sugar, hair loss, malabsorption and kidney problems GP related? Yes. Hair loss isn't all from the Drano treatments it is mostly caused by the lack of absorbing important nutrients in solid foods as well liquids. Yes, its inevitable I am close to losing the rest of my hair but this gal has know for quite awhile. Its just hair and my doctors have more important things to worry about like making intestines work that are paralyzed and keeping me from becoming toxic. I still needed confirmation regarding the great hair loss mystery and today I got it! When it comes the time and that will be soon "I" will be the one holding the sheers not a beautician at the local salon.

The game plan for now is a weekly treatment trying to help balance over active yeast in my body as well doubling up on medication to help boost my compromised immune system. This is the third attempt and although its a long shot at least it gives me a bit of hope. If it works GREAT! if not that's ok and I will just continue doing the best I can with the plate I have before me. Me and my doctor chuckled about my hair loss seeing I told them, "I was born with wayyyyyyy too much hair to start with so if LadyGaga can wear wigs then I can wear wigs." My doctor is thankful for my humor and kindred spirit continuing to fight, fight, fight! I am just thankful for a great team of doctors. I couldn't ask for more! AMEN.

I was adviced by my doctor today that I already had genetic testing for cancer genes done 14 years ago. Since my Grandmother had bowel cancer and my Aunt ovarian it was important to make sure I wasn't at great risk for either. The good news is I showed absolutely no genetic cancer genes only a Lupus gene. I don't have active Lupus but for now only carry the gene. WOW, I told everyone! I guess I went from one evil to another. Now if only I can magically delete the GP gene, hahahaha! Well only one great mystery solving at a time. GEES! I am not Einstein, hahahaha!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 AM EST

Updated: December 16, 2011 2:55 AM EST

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Mood:  bright

Rain, rain and more rain! Are we ever going to get a break or how about some snow? At least we didn't get the monsoon rain they were expecting but no worries seeing that is lined up for tomorrow. GEES! We were going to try and go down to the local Zoo to see their festival in lights show but that isn't going to be happening. I wanted to go the past eight years but either its been too cold or I am sick. So far this weekend isn't looking any better so maybe next week?...

My friend has rotating days off. Today was the first of two. I didn't get up until 2:30pm and tried to be as quiet as possible so he could sleep in. Once I fed the fur kids and took a shower it was already 4pm. Wow! When you can't sleep and go to bed late the days just fly by! I might just hibernate the entire winter season although once I can get my body moving and motivated I do A-OK. Only a few things to do this late afternoon. One going to the post office and second the store. At least with my friend off work he can go with me. I just don't have the energy or strength anymore to do all the grocery shopping. Its nice finally having some help and not being an 'ARMY OF ONE.' AMEN! I decided to make some homemade vegetable soup so we got our list together and headed to do some shopping. I don't know my days anymore. They just seem to all run together. At least the huge pot of soup will hold over for the next three to four days. Littleblue sure knows how to beg doesn't she? Such a silly girl! She knows the sound of food and POOF! she appears!

Once we got back I made a huge pot of homemade vegetable soup. It sure smelled delicious! I also treated my friend to a hair trim. Yes! I am 'Jack Of All Trades' and cut hair too! It sure beats sitting at a hair salon during the holiday season when they are super busy! My friend says I do a heck of a lot better job than any place hes been over the years. Its the least I can do when he helps me out on a daily basis. I also do eyebrows, hahahaha!

We decided later to work out. I got on my treadmill for a bit and my friend got on the AbTwister machine and used the work out video. I used to have a dual weight station system but with GP comes change and once my spine was being affected it was time to part ways. Now I enjoy just light walking and keeping as busy as my body allows.

I see my specialist tomorrow regarding my kidneys and sugar problems then back home to Drano...What a life! What a life! As a good friend said and said it best, "Being hermits and germophobics is the life we have to life." I can't agree with them more all in the name of survival in this GP life. Amen.

Posted by GastroparesisAwarenessCampaignOrg. at 11:41 PM EST

Updated: December 15, 2011 1:15 AM EST

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Mood:  happy

It's hard to be festive when you are sick, but where there is a will there will always be a way!

No need to tell you my bedtime. It hasn't changed. I still refuse to take tons of medication only to help one thing and make other problems ten times worse. I instead allow my brain to override the nausea, vomiting and pain. This means my bedtime is anywhere between 5-6am. I get up when my body tells me it had enough rest. This is between 2-3pm. At least my doctors don't have anymore concern with not allowing my body enough downtime after each treatment.

I created a holiday list this year in hopes of crossing off one festive activity after another. Now if only the constant rain would let up! I don't mind the snow in fact you KNOW I LOVE SNOW! I just don't need to be out in cold, rainy, damp weather and risk getting sick. At least me and my friend were able to take the fur kids up to see the drive-thru light display at a local park. Its a tradition for me and now going on 14 years. This is new to my friend but he really enjoyed it! Its nice when you are not feeling well to just drive-thru the display and not worry about having to get out of the car.

The fur kids really enjoyed the lights although I tend to think they were more focused on smelling the cold, fresh air out the windows and wanting to be one with the woods, hahahaha! They were already tired prior to taking them seeing we made sure to go for a short walk first to avoid any 'accidents' in the car. They had a few new displays this year at the Holidays In Lights and added a new SantaLand where you can visit Santa and his Elves. It was a great day to go because we didn't have to wait in any long lines to view the lights and we could take our time. The fur gang were on their best behavior. Needless to say once we got back home they were all out like a light! Hahahaha!

I found a box waiting for me at the front door filled with goodies! I also got a very nice gift in the mailbox. Thank you Joe & Janet for the movies. It was very thoughtful of you! Thank you France, Roland and the KittyGang for my new manicure set and all the beautiful polish! Let's just say I got to try a few colors out this evening. Now I have "Happy Toes!" Thank you also to all my fellow GP friends as well family, friends and loved ones for the festive cards that line the doors near my couchbed. Its very nice to wake up and see all the colorful cards!

Its the little things in life that mean the most and being remembered during the holidays.

Posted by GastroparesisAwarenessCampaignOrg. at 11:42 PM EST

Updated: December 14, 2011 4:26 AM EST

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Mood:  celebratory

I have always been known to do my own research to help my specialists with my Idiopathic GP care. Recently I was told my kidneys are causing more problems as they filter and flush fluids way too fast! This started a few years ago. We all chalked it up as part of my Idiopathic Gastroparesis. I have done all the urine output tests, blood work, urine cultures, etc. NOW after doing a bit of my own research we have finally found the culprit behind this connected GP problem. There are quite a few of us GP'ers who have problems either with sugar levels too high or too low. Mine tend to run very low even after consuming chocolate or sugar which I am limited to only one brand and two types. I am constantly finding myself craving SUGAR! Not cake or baked goods but sugar. I have also connected the constant urination around the times I am craving sugar. Some say I am a sugar junkie or sugar addict and they are very close to the truth. We have recently found my low blood sugar issues and kidney problems connected to GI problems due to my Idiopathic Gastroparesis. I am unable to gain the weight due to my body is not processing the sugar correctly or breaking it down properly. I also don't spike sugar levels even if I was to consume a handful or entire bag of sugar/candy. My specialists had me using a blood sugar monitor over the past year and sure enough my readings do not elevate. In fact after all that sugar they still run low under 80 and I am back in the bathroom urinating constantly. It takes so much sugar for me to feel better and not have the shakes or dizziness. I still crave it on a daily basis.

NOW WE KNOW WHY.

Is there a cure to this madness? No. Once again doctors must treat symptoms as they arise-if they can be treated. To put it bluntly my body needs the sugar, if not I would either constantly pass out or be in worse trouble. Darn if you do and darn if you don't because my kidneys are doing overtime. Just another organ that is forever damaged and altered due to Gastroparesis.

Here is some info on sugar and connected GI problems. Any of it sound familiar to you?

SUGAR: Without the sweet treat, one may feel tired, light-headed or confused.  There may be shaking or weakness that is relieved by eating something sweet.  More extreme symptoms include shaking or tremors, severe headaches, nausea or even vomiting. 

CAUSES OF PHYSICAL ADDICTION TO SUGAR

Sugar, in the form of a substance called glucose, is the basic fuel of the body.  Other sugars such as fruit sugar (fructose), milk sugar (maltose) and others can also be broken down in the body to glucose.

Normally, our bodies do not require sweets, however, for food.  We eat starches such as rice or bread, potatoes or carrots.  We may also eat fats such as butter, eggs, and meats, and even protein foods.  All these should be decomposed or broken down if needed into glucose in the digestive system and the liver.  The name of this process is gluc.

When a person must eat simple sugars, or even honey or fruit juices on a regular basis, it implies that one cannot breakdown complex foods into sugars.

In other words, the craving arises due to the body's inability to properly digest and utilize other, more complex carbohydrate foods, or fats in amounts sufficient to fuel the body.  Therefore, one wants to eat the end product - sugar.

This is as bit like having a clogged fuel system in a car.  The normal way that gasoline reaches the engine from the fuel tank is by passing through as series of steps to "process" the gasoline.  However, if the fuel system is clogged, gasoline must be poured directly into the engine without the usual processing, bypassing the usual fuel filter and other steps, or the car will not run. 

WHY THE BODY'S FUEL SYSTEM DOES NOT WORK

As in the automobile, sugars in the body must pass through a number of steps in order to be digested, converted, moved into the cells and utilized there for energy production.  A blockage anywhere along the fuel conversion process can and does cause sweet cravings.  Before discussing the trouble spots or places where blockages occur, here are the basic steps in the body's fuel system.

1) Complex carbohydrates or starches, fats and oils and protein foods are eaten.

2) Proper digestion actually begins in the mouth, with chewing to disintegrate the food and enzymes in the saliva that begin its chemical digestion.

3) Once in the stomach, digestion continues, as does mechanical mixing of the food with hydrochloric acid and other substances such as pepsin, a stomach enzyme that helps digest protein foods.

4) As the food passes into the small intestine, it is soon mixed with bile from the liver and pancreatic juices from the pancreas.  These further digest the food.

5) Now the food is broken down into its basic components.  Carbohydrates are broken into sugars, fats and oils into fatty acids and proteins into amino acids.  These must be properly absorbed in the lower intestine, mainly, where they flow into the liver and kidneys.

6) In the liver, in particular, these may be converted into other fatty acids, cholesterol, amino acids and other necessary nutrients.  Sugars may remain in storage in the form of glycogen, or may pass out into the bloodstream.  The kidneys filter the material, making sure that harmful chemicals are properly removed.

7) Once the nutrients leave the liver and kidneys, they move to the body cells.  Here they must pass through the cell membranes and enter the cells.  This requires the vital hormone, insulin.  Any problem in the insulin mechanism impairs movement of sugars into the cells.

8) Once inside the cells, sugars, fatty acids and amino acids enter two energy cycles, called the glycolysis and the Krebs or carboxylic acid cycles.  In these, they are finally converted to the form the body actually uses for energy, mainly a substance called adenosine triphosphate or ATP.  This completes the process of sugar utilization.  As one can see, it involves quite a complex number of steps.  Now let us see what  happens in people who have a sugar addiction.

TROUBLES IN THE FUEL SYSTEM

 There are many possible trouble spots in the body's fuel system.  Among the most common are:

Posted by GastroparesisAwarenessCampaignOrg. at 11:40 PM EST

Updated: December 13, 2011 4:14 AM EST

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Mood:  celebratory

That's another 'V' for victory! YES! I am still ALIVE! I made it through another Hell-In-A-Jug aka Drano treatment! WHOAHOA! Never again though should I attempt treatment being home alone in the evenings seeing this round wasn't very nice in fact it was extremely wicked! When things hit you a wee bit too quickly it can also hit you twice as hard when it comes to side affects of the unknown. I have also come to learn peppermint tastes the same coming back up as it goes down. YUCK! So maybe peppermint isn't such a good thing to eat hours after treatment although it seemed like a great idea at the time!

I honestly didn't get up until 4pm. If anytime I was close to just throw in the ole towel with the evil GP life I came close this afternoon. It gets harder and harder each week for me to rebound. Don't ask me how I do it or have the fight to keep on keeping on but somehow I have it within and here I am! A Drano Survivor! Hahahaha! Sounds funny doesn't it? This treatment I had the typical nausea, vomiting and low blood pressure with chest tightness. A new side affect happened this morning at 9:15am when I started having panic attacks. OH NOT GOOD! Panic attacks are scary as heck and once you have one you never forget it either. Luckily my friend had their cell phone on at the armory and talked me through it. I also had Mr. Valium here at the house so within fifteen minutes my brain lost and instead of dealing with another panic attack I went right back to sleep. Can we say THANK THE GOOD LORD!?! I DID!

Although my body and brain are still tired its important not to lay around all day. Heck, I already slept until 4pm VAMPIRE TIME...BOO! My Mom was nice enough to come pick me up this evening seeing I am far from stable on my feet. I also have the side affect from the Trilyte/Golytley that makes it hard to talk. I know what I want to say but I just can't think of the words. Its a strange reaction to treatment but its sadly the norm. My brain is in a fog I like to say over the next twenty four-forty eight hours. A Drano Fog. We didn't go too far from the house just in case I got really dizzy and sick. Just long enough for me to get some exercise and walk the treatment down my GI tract. Regardless how scary it can be enduring weekly nightmare Hell-In-A-Jug treatments I don't have the sweats anymore or intestinal pressure as if my insides are going to rupture. I don't look like I'm six months pregnant anymore either. Its a rapid way to drop three pants sizes, hahahaha!

WELCOME TO MY WORLD FOLKS!

There are five of us not so lucky GP'ers. I might want to just call us the five Survivors of the never ending intestinal nightmare of weekly clean outs. I have yet to meet my GP twin who also has to drink this toxic poison on a weekly basis. I am sure he/she is out there so its only time before we meet and can exchange scary stories. My other fellow four clean out buddies drink mixtures of magnesium-citrate along with other laxative concoctions. Maybe Santa just needs to send us all chemist sets for Xmas! Some even braved having their colon removed in hopes of putting down the last glass and bottle of dynamite. Sadly once Gastroparesis invades the intestines there is no turning back. It doesn't get any better as each nerve slowly dies and paralyzes one inch at a time. If your small intestine is paralyzed and lacks motility then sooner than later the large intestine/colon will also lose function. Same goes if its the other way around but regardless some how my poor fellow GP friends are back drinking the foul stuff. Its a never ending game of magnesium-citrate and other medications all in the name of finding some sort of relief. Some sort of normal life. I am sure they agree with me in saying, "You never have a normal life again with Gastroparesis." Amen.

We are all fortunate to have each other through the GP battle. Some have their poker groups. Some have their cheer groups. Others have their sports groups. We all have our 'Clean-out Group' here to support one another every glass of the way. CHEERS! my fellow drinkers to a better tomorrow and a less painful day!

 Off to join Littleblue on my couchbed as Oreo enjoys some birthday Milkbone treats. Glad one of us can splurge this evening! Hahahaha!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST

Updated: December 12, 2011 4:24 AM EST

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