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The Road Before & After Surgery
February 28, 2012
6 Years Later...The GastroparesisPatientsgroup Anniversary!
Mood:  celebratory
Now Playing: Day 683-The Final Road To Survival

One idea 6 years ago completely changed my life. All for the better and I am also a better person for it!

6 years ago I created the "Gastroparesispatientsgroup" sponsored by Yahoo. It was a place I created for Gastroparesis patients, their family, friends and loved ones all around the world to gather and support each other. A place everyone could go and ask questions, exchange ideas, vent and most important to connect and find lifetime friends. I am happy to say every goal has been attained and the online GP family has truly been a huge blessing in my own life. I call them my family and I am sure everyone in the group also agrees because there have been friendships established that continue to test the hands of time. We are a tight knit family and what one goes through we all go through together.

I want to say, "Thank YOU" to all my fellow GP family members for being my rock and strength during some of the most difficult times in my life. You have all taught me so much over the years as you continue to inspire me to become a better person.

These are some photos of the GastroparesisPatientsgroup online family. Happy times not sad times because even GP patients need a break from suffering and to be able to enjoy a moment in life to smile.

Here's to 6 years and many more to come my dear friends!

"In Memory Of Shannon, Brina, Scott and Impy."


Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST
Updated: February 29, 2012 4:09 AM EST
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February 27, 2012
Thinking "aHead!"
Mood:  cheeky
Now Playing: Day 682-The Final Road To Survival

Finally! It's Drano time!

At least I got a HEAD start on the day and made sure to set my cell phone alarm seeing I don't want to start treatment too late in the day. Last time I waited until later I ran out of things to keep me moving and it didn't work. At least today I kept my HEAD on straight and also was able to avoid all stress. WOOHOO! I even got a friend to pick up some wig HEADS for me. Aren't they scary? I tend to think they even know better than to try the liquid toxic poison. Hahahaha! Needless to say we all had some fun with the styrofoam heads! Who would had known the wig and beauty supply store down the street sold them?! Since I am now starting a small wig collection I needed some type of holders to put them on. If you keep them in the original packaging they will get ruined. I told a few friends I would come over their house while they were sleeping and hide them in the closet, next to their bed and in the bathroom. Hahahaha! At least it kept my mind off the nasty taste of the ole Drano today. AMEN! Now they have a new place on the closet shelf. Some of my friends even named a few of them. I know! OH LORDIE! I already see a home video in the making! "The Headless Wig Whisperer." Hahahaha!

With Trilyte (aka surgical prep aka Colonoscopy prep or more like Hell-In-A-Jug aka Drano to this gal) you never know how it will hit you or when it will start working. Today lets just say it hit WAY TOO FAST! I didn't drink anything after 2am and once I got up I didn't drink anything either. I wanted to avoid any delays with treatment going into the next day. Trust me it worked! It just worked a tad bit too fast...Five hours after treatment I could barely keep my eyes open and I was getting ice cold. I took my blood pressure and we won't go there on the reading. In fact it scared not just my friend but me a bit and that's rare. At least I know when this happens the worse thing to do is panic and instead I started reaching for salt packets, sugar packets, Pedialyte, Gatorade and Nestle Quik. I had a buffet of liquids all night into the early morning hours next to me on my side couch cart. After a night full of bathroom trips and constantly consuming a variety of liquids I was able to get my blood pressure back up in a safer range then I fell asleep.

Someone asked me today via email, "What is Drano?" My honest response would be, "Something you should pray you never have to endure on a daily basis because it is extremely dangerous." Instead I had internet issues the past 24 hours and wasn't able to reply but if she is reading the blog today I hope I explained it a bit better. Just consider it like the plumbing product "Drano" but for your intestines. It unclogs all the pipes. Hahahaha! OK. Wasn't funny earlier today but I think she might get the point.

I have yet to meet anyone who has to endure this liquid dynamite on a daily basis. Heck! I haven't even met anyone who has to endure this stuff on a monthly basis. I guess I continue to be in a league all my own...Maybe one day and SOON they will find something better. One can only hope!


Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST
Updated: February 29, 2012 2:40 AM EST
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February 26, 2012
Stress=DraNO...
Mood:  lyrical
Now Playing: Day 681-The Final Road To Survival

This was suppose to be Hell-In-A-Jug day. I woke up with a clear head and brain until a few hours later then it all went south from there...

The problem with the toxic poison is it causes issues with your blood pressure and other not so nice things with your body. Any little, teeny, tiny bit of stress and you might as well forget it. Then I have to hold off treatment until the next day. My Gastroenterologist has faith in me to know better consuming the liquid dynamite while under any stress. It can have deadly consequences so its not worth the risk. I will just have to wait until tomorrow to start treatment. Its not the first time this has happened nor will it be the last.

Since I now have a Drano freedom day and the weather is winter nice I decided to get a head start on next weeks errands. My head wasn't giving me any grief today nor firing up so why not take the car for a spin? I also got to go visit a friend of mine I have known now for over five years. Its been a bit since I last got to visit him so it was nice to just catch up on life. He has been remodeling his son's bedroom from the ground up and so far it looks amazing! He did a really great job and I can't wait to see the final touches. Its very self gratifying to do your own home remodeling projects because once you are finished you can stand back and see all the hard work come together. Far more rewarding than hiring someone to do it for you. My friend is taking his two weeks vacation from work and doing a cross country trip with his son. He has wanted to do the trip for years now and its so nice to finally see his dream come true. They will both have a great time and also make some life time memories. They are super excited! Its sad hearing all the places they plan on visiting along the way because it makes me realize all the places I can't go nor see due to being sick. I sure wish I would had done more extensive traveling in my 20's but who would had known I would got so sick once I hit the age of 30? I did take vacations and got to go out of the country twice but if I had that crystal ball back then I would had done so much more! I still hold onto hope and that one day I will see the ocean again but for now I do good just to sit in the car for more than an hour and thirty minutes.

Once I got home I finished up some house chores then attempted to find something to mix with this new Slimfast. Why in the world they changed the formula and consistency after how many years I have no idea but they did and it doesn't agree with me. I tried watering it down but its still very hard for me to consume. I can't tolerate Boost or Ensure because it won't stay down. There is a cat named Zoey down south who will fight you over a bottle of Ensure. My friend AnnMarie said she is lucky to finish a bottle without Zoey being right by her side. Hahahaha! Too funny! I bet with Zoey drinking all the Ensure there is a few extra years added now to the nine lives! Hee,hee,hee,hee...

My dear friend Andrea sent me some wonderful news this evening and a too cute not to post picture. They welcomed this week the newest member of their family named, "Draxtin." What a cutie! After 29 hours of induced labor all natural with no pain meds or epidurals. YIKES! I stand up and applaud her because that same pain is what those of us with intestinal dysmotility due to our Gastroparesis go through and trust me folks it isn't fun. Congrats to you and the entire family! Welcome home Draxtin.

Here's to Drano Monday and may it be a stress-free one too!


Posted by GastroparesisAwarenessCampaignOrg. at 11:59 AM EST
Updated: February 27, 2012 5:09 AM EST
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February 25, 2012
Foodies!
Mood:  a-ok
Now Playing: Day 680-The Final Road To Survival

I finally caught up on some solid sleep! Ahhhhh....Sure needed it too!

The animal gang had a play date set with Jingles puppy who isn't so 'little' anymore. He is almost the same size as Oreo. At only four months old I can't imagine how big he will be once fully grown. Littleblue has had so much energy lately that its been great allowing her to have some play time with Jingles and giving him a run for his money! Hahahaha! Oreo isn't so nervous around Jingles anymore and I assume it has to do with Jingles now being a bit older. The weather has started to get much cooler again which is nice because the ground will be frozen enough for the gang to play outside in the backyard. My spring flowers are already starting to come close to blooming so something sure has to change soon because flu season is even running late and that is scary! YIKES! Everyone stay far, far away from me! Last thing I need is to catch the flu. Amen!

I decided to have a pizza night with friends. Of course I do love to cook but milk products are a huge no-no for this gal. I do fairly OK with the small Dannon yogurt drinks but assume because they are so small and come in a tiny little bottle. Cheese and me just don't mix. Neither does ice cream. Sadly my Gastroparesis has taken the ability to eat much of anything. I can count on one hand now what I can tolerate and that isn't much. Regardless I still love to cook and enjoy the smells of all the various foods as well my friends appreciate the thought that goes into cooking. It makes me happy to see them enjoy the food. The homemade pizza was another huge hit and left a few very full stomachs. Me? I got out my juicer machine and blended my fruits and veggies for the next few days. At least I am getting all the vitamins in one juicing session but now to just get my body to absorb them. I asked my specialists for a prescription to get some time released vitamins. What you can buy at the store works great if you have a normal GI tract and digestive system. For me I need something much stronger and something that has a rapid absorption. My hair and nails haven't been growing so I am in dire need. I know the ole Drano is to blame for half of the problem but the other is due to my Idiopathic Gastroparesis. Anything at this point is worth a try! If all else fails I guess at least I will keep my local wig store in business. Hahahahaha!

Pizza or liquid green juice? Dumb question but smart answer from someone who knows better. LIQUID GREEN JUICE PLEASE! Hahahaha!


Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST
Updated: February 27, 2012 3:30 AM EST
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February 24, 2012
It's The Little Things In Life...
Mood:  hug me
Now Playing: Day 679-The Final Road To Survival

They say its always the little things in life that mean the most to people. I also believe in that statement.

After a night out having fun I was once again reminded of my condition as the nausea and vomiting followed me home. I was doing really good until I got hit with both that seemed to come out of left field. Expect the unexpected and unpredictable with Gastroparesis. Its a good thing I kept the zip lock bags in my car or I would had been in huge trouble. What turned out to be a great night out turned into a very quiet drive back home. Thank goodness my friend drove but it was still a very wicked trip back to the house. I don't remember going to sleep but I do remember the sound of the doorbell around 12:30pm. The fur gang were also very tired so luckily it didn't wake them up. I figured it was just the local UPS driver and he would leave the package on the porch. Once we all got up around 2:30pm my friend found a note on the door. I opened the envelope only to read the very sad news about my dear neighbor. Jerry had passed away Wednesday evening after battling a broken hip, two surgeries, intestinal infection and colon cancer.

I moved into the house over eight years ago and Jerry was like a Grandfather to me. He was always smiling and in high spirits. He loved petting the fur kids when they were outside and enjoyed lazy summer days sitting on the front porch bench we gave him. I always enjoyed bringing over home cooked meals and baked goods. Every holiday I always made him something special. He collected the traditional Christmas photos we did every year and put them near his desk. His daughter wrote in the letter that her Dad wanted us to know that he appreciated everything we did for him over the years and all the baked goodies I made. Its hard looking out the kitchen window and not seeing Jerry and his beloved fur kid Lady getting in the car anymore. I will miss his warm smile and stories about his life. I will miss his sense of humor and the times he was just wanting friendly advice on a new shirt he bought. I am sure everyone that Jerry met in life will miss him.

It's the little things in life that mean the most to people. I have found over the years when we are sick or get older we appreciate the kindness of those around us. Its not the huge elaborate gifts its the thought and the heart behind small tokens of love that mean the most. Jerry was a very selfless man who never met a person who he would consider a stranger. Shouldn't we all be more like that in life? I think so. During his final days his daughter said he was upbeat and remained a fighter. He was always more concerned about others than he was about himself. Jerry saved more than one life. He saved many because he made the choice years ago to be an organ and tissue donor. Now Jerry's memory will live on and allow others to live life again.

I will miss Jerry and thank him for being a genuine friend. He never saw me as any less of a person and remained hopeful that one day there would be a Gastroparesis cure. Jerry always offered to take me to a huge buffet to eat to my hearts content. Although I could never take him up on that offer here on earth surely one day when we meet again I will be able to in Heaven...


Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST
Updated: February 26, 2012 4:45 AM EST
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February 23, 2012
The NOT So Fun Parts Of Being Disabled...
Mood:  don't ask
Now Playing: Day 678-The Final Road To Survival

It has been one heck of a stressful day! I can't wait to get out and escape life even if only for a few hours because of all times this is when I need it most!

I set my cell phone alarm so I didn't sleep the day away. I had to head back down to the courthouse for the second time this week trying to get things filed but seems the docket office isn't even sure on what forms I need. I 'thought' finally I had everything good to go only to be told I was missing another set of forms then one set I was told I needed yesterday I now don't need then they close at 4pm but only do filings until 3:30pm blah, blah, blah, blah....Another Charlie Brown's teacher day where everything sounds like it blends together making absolutely no sense at all. I almost cried in line when I was told once again I would have to come back. What they don't understand is my medical condition and how hard all this stress is to a pre-existing condition. What I would had liked to do was ask if everyone was on the same page because they clearly were not. Once I was told I had to come back again I was so frustrated I couldn't even look up at the docket office staff but only put my head down and turned away.

It's not easy being disabled. Its not fun nor is it a free joy ride milking the system like some may believe. I would like to take this day from hell and personally hand it over to those who feel anyone is milking the system by being disabled to take a walk in my shoes for a change. Any ones shoes who battles a chronic condition on a daily basis trying to find normal energy and deal with normal daily activities with a twist. I once again had to deal with my insurance company who insists I pay for one prescription at a time with my Hell-In-A-Jug treatments which are done on a weekly basis. Its hard enough living a unique life with a medical condition but add onto the stressful mix your insurance company breathing down your neck not wanting to cover medical necessary medication. No its not a generic statement when anyone discriminates against others who are sick regardless what condition it is and clearly I am reminded of those choice of bad words when I am faced with a day like today. Worst part is when days like today I am reminded by my limitations and those exact words. Especially knowing they came from a family member.

Once we got out of the downtown mess and dealing with a very unorganized courthouse it was time to get out and escape life-reality. I was more than ready to go out this evening and not have to wait until the weekend. We were suppose to get severe weather including hail, high winds and a chance of tornado's this evening but like Gastroparesis our weather anymore is just that. "Unpredictable." After keeping a close eye on the local radar and listening to the weather forecast I felt comfortable to still proceed with this evenings plans heading out to de-stress because we both needed it! Not only was going with my gut a smart decision but I had a great time and I was able to put the stressful day behind me. I refuse to allow stress to continue longer than it need be and its not worth wasting my energy when I can put that towards having fun enjoying life. Amen.

Did we get those strong storms? Nope. The only thing we got was a few gusts of wind and a light drizzle or two. They are saying snow in the forecast for this weekend. If so I will be one happy gal! Maybe we will have winter weather for the spring and summer since its been spring and summer weather all winter. Hahahahaha! Say that ten times really fast!

Courage is the discovery that you may not win, and trying when you know you can lose.


Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST
Updated: February 25, 2012 1:19 AM EST
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February 22, 2012
WOOHOO! I Still Have Teeth!
Mood:  celebratory
Now Playing: Day 677-The Final Road To Survival

It's been a longggg day!

I didn't sleep well last night either-blah, blah, blah! Sometimes I feel like that school teacher who talks to Charlie Brown. That's GP life for ya!

Darn if I didn't forget to set my cell phone alarm last night when I went to bed at a record time of 2am. I was beat! So beat I almost slept through my dentist appointment. At least I had my clothes set out and the coffee maker ready to go so once we got up and let the dogs out it didn't take long to head out the door. I got to the dentist's office with three minutes to spare. Some how I feel like maybe I have earned myself a frequent dentist pass or a rewards program card. Hahahaha! Something with maybe trip points based off of how much dental work you've had done. If that was possible they could have sent me around the world by now. I not only won myself more dental work today but another visit early next month. WOOHOO! NOT.

Since my dentist appointment was at 2pm and we got out at 3pm there was plenty of time left to head up to the mall and do some walking. The intestinal pain hasn't been too kind the past few nights which I assume is from the darn Drano after math. Speaking of Drano...My Gastroenterologist's office called twice while I was at the dentists to confirm they had contacted my insurance company and the drug manufacturer with a medical necessity letter explaining why I must endure the toxic poison on a weekly basis. That was great news but the down side is my insurance company will only allow now one jug per prescription which comes to $20.00 a jug. WOW! That would add up quickly and who could afford that?! So once again I had to call my doctor and have him submit a new prescription with four jugs per script. Here's hoping it gets approved tomorrow but at this point I should expect the unexpected this way if things go through easily I will be pleasantly surprised!

We did stop by a wig shop after my dentist appointment because someone suggested I look into a human hair wig. I was told they last longer than the synthetic ones. What they didn't tell me was how horribly cheap they look with an expensive price tag to boot! OUCH! Thanks but no thanks. I will stick to the ones I have now and the lady who sells them in a huge stylish shop by my home. The one I went to this afternoon looked as if the building stepped right out of the 50's. Wigs to match. Ahhhhh things us GP patients have to look forward to including hair issues but its only as easy of a transition as you make it. I do mine with a sense of humor and an easy going attitude. At least once my hair is finally gone I will wear stylish wigs that don't look like something out of the cartoon, 'The Jetsons.'

KUDDOS TO THAT!

The mall? We made it there but at this point I was already running out of energy. My friend was hungry so we first walked up to the food court where he got the oriental buffet. I only had a few small bites. Enough to back fire and for me to pay royally later this evening once we got home. What doesn't go down will always come back up. Hello Mr. Puke Pan!

Give me a "A" for effort because I still try and test things on a constant basis. I will always run into hits and misses. Oriental food=MISS. Three teeth needing work instead of 11 like last year=HIT. Cheers to still having teeth! Hee,hee,hee,hee...


Posted by GastroparesisAwarenessCampaignOrg. at 11:56 PM EST
Updated: February 23, 2012 12:53 AM EST
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February 21, 2012
More Drano Issues? G E E S...
Mood:  irritated
Now Playing: Day 676-The Final Road To Survival

This is exactly what it feels like drinking the Hell-In-A-Jug on a weekly basis! Hahahaha! OK. So its not too funny during treatment but this photo just was too HONEST not to post! I think all my clean-out buddies can agree by saying, "Just put a straw in it!"  Maybe a different flavor too! Like malted chocolate instead of toxic ocean salt water flavor.

Today felt like Monday all over again. It started on the wrong foot but at least ended much, much better and I was able to get more than a few things accomplished off my huge week "To Do List." Just when I thought I had all the court papers completed POOF! there are two more sets to complete. Seems there is a reason why lawyers exist and it isn't always to represent you but just to do the arm length of papers that need to be filed out by our court system. After that snafu experience I headed to pick up my Drano prescription refill only to be told the insurance company once again refuses to cover it. Seems they don't understand over and over and over and over again why I am drinking colonoscopy/surgical bowel prep on a weekly basis since most people who lose intestinal motility have most of their intestines removed then get a colostomy bag. I tend to firmly believe they have never met a gal like me. Hahahaha! So once again I had to go through the same ole song and Drano dance: Call my Gastroenterologist, have him fax a medical necessity letter to the insurance company then contact the pharmacy.

It just never ends sometimes does it?...

At least once we got back home things turned to a more positive note. THANK GOODNESS! I got some wonderful news online from a private owned corporation and more great news coming from us both in June. I am also hoping to meet some fellow GP friends next month if the ole Gastroparesis permits but for now I have to take things one day at a time. The fur kids were on their best behavior and got two walks this evening. They were both very happy to get some time to play outside. The house chores are caught up and so is the wash. WOOHOO! I am on a roll and here's hoping that my dentist appointment tomorrow leaves me with teeth still left in my mouth. Hahahaha! YIKES!


Posted by GastroparesisAwarenessCampaignOrg. at 11:54 PM EST
Updated: February 22, 2012 12:32 AM EST
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February 20, 2012
DranoDaze...
Mood:  d'oh
Now Playing: Day 675-The Final Road To Survival

I have a Drano hangover from hell. I also didn't get to sleep until 5:15am after two hours of stabbing pain. Seems not only did the Drano aka Hell-In-A-Jug hit me way too late but it also got stuck in my lower intestine. The sharp stabbing pain started around 2:30am. Usually taking a walk helps to move things around and if my intestine is kinked up it will 'usually' help release it but not this time. We got the fur kids on their leashes and headed to the park across the street but once I started walking the pain got worse. Once we made it half way through the park I quickly had to turn right back around because the pain was getting to be off the charts. Its times like these when you must question how much more pain you can take and if its time to head to the emergency room. What I need to get is a stethoscope this way I can hear bowel sounds and find out exactly where they are coming from. Once I got back in the house I did my best to find a comfortable position then placed my hands firmly over the area where the pain was coming from and sure enough the darn Drano was stuck where my colon is fused to other parts of my intestines. I got to a 9 on a scale of 1-10 with the pain and told myself I could handle a 12 then it was time to head up to the hospital. Luckily around 5am after two hours of pain the liquid dynamite was finally able to move through the last part of my intestines and the pain started to ease up enough for me to finally lay down. I didn't get up until 2:30pm but am happy to say I did wake up pain-free. THANK GOODNESS! This next treatment I will be starting earlier!

We are suppose to have a rainy week. Not like we need anymore record rain. What we need is a month to dry out. The fur kids finally got time to play outside in the backyard to release some energy. They also got a few walks. With all the rain they are predicting it means things will soon be a muddy mess again so no more backyard fun time. I am so tired of the rain and so are the gang!

I got a call from my dentist and have the first of three appointments set for Wednesday. Not only do I see two new cavities but he said I had another one yet to be filled since my last visit. Thanks to my hellish treatments it is ruining my teeth and becoming beyond expensive! At this point my teeth are becoming the most the expensive part of my body and that IS SCARY! Maybe I should had false teeth put in a few year ago then I could just leave my dental problems at the dentist's office and pick them up later. Hahahaha! At least the kitty gang don't have to worry about dental problems but with the spring like temperatures they too are starting to shed earlier than expected. Once I get the brush out they like to run as I try to brush them. Most cats love being brushed but I think mine believe its nothing more than playtime. Hahahahaha!

This evening after switching from the Valentine's Day decorations to St. Patrick's Day Littleblue and Oreo finally called it quits and went to bed early. I guess all the nice fresh air got to them. I am hoping for the same. An EARLY evening! Amen! 

You will find as you look back upon your life that the moments when you have really lived are the moments when you have done things in the spirit of love.


Posted by GastroparesisAwarenessCampaignOrg. at 11:11 PM EST
Updated: February 21, 2012 1:36 AM EST
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February 19, 2012
DRANOFIED!
Mood:  d'oh
Now Playing: Day 674-The Final Road To Survival

I feel DRANOFIED! (Dedicated to my friend John who loves when I create my own words-hahaha!)

Here we go! Time to start a new week with the first round of liquid dynamite. I have a few appts already this coming week so I only have a few days open to do both treatments. UGGGG! My darn teeth are once again acting up due to all this treatment and looks like I have two new cavities needing to be filled. My next cleaning was suppose to be March 1st but right now I need to focus on the two fillings first! I also have a routine scan to check on the cyst in my chest that was found last year. I am already four months overdue and I am starting to get reminder letters from the hospital. My insurance company sent a letter yesterday letting me know it is covered under routine preventative care at 100%. Thank goodness seeing thats about the only thing they are wanting to cover lately. This is going to be a very busy week!

While consuming the nasty salt water with a kick I noticed it might be time to replace the ole couchbed and loveseat. The set is only four years old but I don't want to wait until its no longer in good shape to sell it. With it being tax refund season if I am going to sell it now is the time! I have the new extra large recliner in the backroom that has only been used around five times so I was thinking of just buying a sofa to replace the one I have now and putting both recliners in the living room where the loveseat is placed. This would allow for more open space and guests could use the recliners when visiting. The new sofa will be a bit larger than the old one which also allows for more room to sit. I cleaned them both up this evening and took a few pictures and placed the online ads. Hopefully it won't be a problem selling them so I can buy the new sofa before spring.

Lot's of new and exciting changes coming soon and I can't wait! Its about time for some positive news isn't it?! CHEERS!


Posted by GastroparesisAwarenessCampaignOrg. at 11:50 PM EST
Updated: February 20, 2012 2:25 AM EST
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