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The Road Before & After Surgery
June 12, 2012
Drano Day Round #2!
Mood:  don't ask
Now Playing: Day 793-The Final Road To Survival

If you first don't succeed then try, try again. OK. So the first round of treatment didn't work yesterday. It didn't work at all! Make today Drano round #2 and if this doesn't work then forget it!

One day of Drano is bad enough but for the first time I got ZERO, ZIP, NADA relief so today I was stuck with a back to back dose of wicked treatment. UGGG! This might be a reason why my specialists are urging the importance of getting these darn intestines out and if for some scary reason the new surgical team isn't comfortable and they run like hell at least they will perform surgery on an emergency basis. That is "if" I could or would make it into the surgery room. Sudden bowel rupture is deadly and you only have a certain amount of time to make it to the hospital. When you have a very high tolerance of pain like myself it can be tricky to know "when" its time to head to the emergency room but I try not to think too far ahead. I just hope I will never have to go through such a scary scenario but I am a realistic when it comes to my unique and progressive medical condition. "It is what it is."

So....I finished up another Hell-In-A-Jug treatment by early this evening then decided to play landscaping Supervisor while my Hubby got the flowerbeds de-weeded and ready to plant more wildflower seeds. The sunflower seeds we planted last week became a quick snack for the squirrels so I decided to just plant some additional wildflower seeds that way I know at least they won't become an appetizer for the wildlife gang. Hahahaha! Wildflower seeds are great because you get such a wide variety of flowers that come in a rainbow of colors. They are also low maintenance and love the sun and summer heat. The tiger lillie's and roses are doing really good and so are the butterflies bushes however we have only seen a few butterflies so far this year. Hopefully once the first round of wildflowers start blooming that were planted last month we will start seeing more butterflies and hummingbirds since they attract both.

After a long Drano day for me and a productive day outside for Eric we decided to get the lounge chairs out to relax. Seems Oreo and Littleblue had the same idea so we each shared part of our chairs. Looks like the next thing on our list to buy for this summer and fall will be a few more chairs!

Now all I need is the beach, sand and seashells. Doesn't that sound nice?! We can always still pretend can't we?...


Posted by GastroparesisAwarenessCampaignOrg. at 11:30 PM EDT
Updated: June 13, 2012 2:43 AM EDT
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June 11, 2012
Living In A Drano World...
Mood:  hungry
Now Playing: Day 792-The Final Road To Survival

I'm just living in a Drano world as one of the unlucky victims...EEK!!

Yep. Its that time again. It's Hell-In-A-Jug day. This circle of liquid dynamite just never ends and I don't think it will ever end in this lifetime. I need to come up with some fun ways to make treatment days go by a bit easier. Maybe something to help bide the time and keep my mind off of whether or not it will work too quickly, not fast enough or come back up. If you think reading about Drano gets old then you need to drink this stuff on a weekly basis. Even the prescription refills have now become their own story with each trip becoming more interesting than the other. It isn't the Drano that makes it interesting but instead the continued reactions of others. I am so glad Eric had to go pick it up today seeing I was too busy chugging my own jug at home. Yes, another interesting audience at the store for him full of strange looks and even stranger questions. Maybe not strange to us because we are used to it. Not that drinking this foul stuff is bad enough but staring down another six jugs was the last thing I wanted to see today. UGG!!!!

With it being less than two weeks away from seeing my new surgical team I needed to finish up the rest of the paperwork. Its like signing your life away. Actually your intestines away. Hahahaha! Maybe my intestines need their own social security number because clearly they are starting to have their own identity. Everything lately has literally been evolving around my GI organs. NO LIE. Between the every other day feeling of not being able to breath due to the intestinal inflammation pushing on my lower lungs and daily energy that quickly gets zapped its been a one thing GI event after another. For those who have asked, "Is that a new hair style in your wedding photo?" and other questions I have honest answers for you but for those who are fellow GP friends you already knew the answers.

*No. I lost most of my hair over the past few years which got even worse after each weekly treatments. It has been a slow process thankfully after having too much hair to start with. Hee,hee,hee,hee...I have my own wig collection at home and although I would love to have my full head of hair back it is what it is. I have learned to accept it and there's no use crying over spilled milk.

*My nails have done the same game as my hair. Here today, gone tomorrow. Not being able to eat normally and staying on a mostly liquid diet is only part of the problem. When you have Gastroparesis your body can not break down nor absorb important vitamins and nutrients properly so your nails get brittle. I do occasionally get nails put on or do them myself for important events however with risk of infection that is caused by nail glue I only keep them on for a week-max.

*Yes. I still have to use a cane and wheelchair if walking for a long period of time. I will always have my good and bad days. In our wedding photo I was able to lean onto Eric to keep my balance and same with a few others taken out of town. After awhile you learn not to pay attention to the reactions of others because at the end of the day does peoples opinions who have no idea of my condition really matter? Same with using masks outdoors. At first it drove me nuts with people looking oddly at me but now I don't think twice about the reactions or children staring. Hey, maybe I should take a few extra masks along with me seeing the smog and humidity in this city surely can't be healthy for anyone outdoors.

I guess my point is, life is clearly what you make of it. Good or bad. While people might spend their time and money buying into vanity and what others believe they should look like I am too busy putting my time and money into saving vital organs in order to just survive. Kinda strange how being sick puts life into perspective isn't it? Wisdom isn't gained by age. Wisdom is gained by survival and learning life sustaining lessons along the way.


Posted by GastroparesisAwarenessCampaignOrg. at 11:11 PM EDT
Updated: June 12, 2012 4:30 AM EDT
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June 10, 2012
Rounding Out Another GP Weekend...
Mood:  hungry
Now Playing: Day 791-The Final Road To Survival

I am so mentally hungry its not even funny! Now if my GI organs would just allow for some food...sigh...Sorry, but even the best liquefied food doesn't cut it. Maybe I found a few new fruit and protein drinks lately that do fairly well staying down but trust me even I have my days when all this Gastroparesis nonsense gets old. Very old! Now I know how Pumpkin kitty feels eating the same ole food day after day so its no wonder now I have to change it up a bit and mix a different variety with his normal food. It has also been keeping him from meowing all hours of the night due to being bored with his food. Yes! The fur gang are one word, "spoiled" but they are well behaved fur kids and worth it!!

Since I am just 24 hours away from another Hell-In-A-Jug treatment its been a day full of running errands while I still have the energy. Forget hitting the treadmill later because I would rather be outdoors walking at the park. At least Cuddles kitty is getting some use out of it today. Hahahaha! She looks too funny! Poor Oreo has been having one heck of a time with his hearing. Its scaring him so much that I am now literally tripping over him as he stays close near my feet. We have to take him back to the Veterinarian next week to see how much hearing he has left or if maybe one ear is better than the other. Its tough on poor Oreo but I am so glad someone is always home with him.

One of my dear fellow GP friends Darlene recently got the Gastroparesis Awareness Campaign motto I started eight years ago tattooed around her ankle. It looks so neat and its such an honor to have others sharing the saying, "KEEP ON! KEEPING ON!" With Gastroparesis it is indeed a struggle with the wide range of symptoms we all suffer on a daily basis. Support is very important and such a critical key to our over all care! Its been truly amazing watching our GP family grow through out the years and no matter how hard the journey may become we will never walk alone because we will always have each other. AMEN!


Posted by GastroparesisAwarenessCampaignOrg. at 11:42 PM EDT
Updated: June 12, 2012 3:15 AM EDT
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June 9, 2012
Is This A FULL MOON Day?
Mood:  don't ask
Now Playing: Day 790-The Final Road To Survival

OK. There must be a full moon tonight or something because WOW! people acting mighty odd and strange today!

Actually it must be a combination between the heat, humidity and the half-moon tonight. Hahahahaha! Honestly I had to step back this evening and say outloud, "OK. This definitely isn't me. This isn't us. Today's odd and testing day is from the actions of others." Just like my little chipmunk outside who has now made a huge tree stump condo tis best to go back in hiding until people go back to being normal and not werewolves. YIKES!

Remember I went into hiding to keep stress at bay three weeks ago and obviously I reemerged a bit too quickly. Looks like I need to get back to my peaceful retreat for quite awhile longer. This also helps my Gastroparesis and connected problems to stay in check since stress is fuel to GP fire. One would think I should had learned but lets just keep saying, "I am a work in progress."

We all got some solid sleep last night which was well needed. Oreo has still been glued to us and can't seem to get comfortable until the evening after he gets his medication. Its still hard to get used to him not being able to hear as well so we have to sometimes walk up to him so he understands us. At least it hasn't been too hard getting Littleblue back inside the house compared to the cooler weather when she would prefer to be outside all day. With late spring and summer upon us so are all the new wildlife babies. By accident watering the front landscaping we came across a nest of baby rabbits.  Add to the rabbits a groundhog den near the backyard fence line and a few skunks. Now its a huge feat just keeping a close eye on Littleblue and Oreo when taking them outside. All the new wildlife babies usually start emerging this time of the year so its typical to start seeing them around the front and backyard.

Speaking of backyard...

"Just" when the honeysuckle trees and bushes were finally full and providing plenty of shade near the back patio area POOF! they disappeared!! Remember, we built a small sandbox on the patio last fall so this spring and summer once the honeysuckle trees and bushes grew back I could enjoy sitting out there since they provide lots of shade. What I didn't know was while I was sleeping the shade was slowly starting to disappear. Mind you, if I do any yard work that might go into either neighbors side of their yard I always made sure to ask them before cutting. I would assume everyone has some common courtesy to do the same but I was wrong. Instead now having a quiet shaded place to rest and put my feet in the cool sand after treatment days I might as well instead head down south to the ocean because its gone. Yes. That started my day waking up to realize my new neighbors butchered all the beautiful honeysuckle trees and bushes so they could plant grass seed?!! Say what? Another thing was I just planted grass seed for shaded areas where the bushes were and the grass was growing nice and thick. Now it just defeated the whole purpose. So did having somewhere in the backyard I could rest and enjoy after enduring Drano. I guess its that half-moon day or something because I would had thought like the prior neighbors who lived there they would had said, "Hey, since the bushes and trees are hanging over a bit I am going to just trim them back but we wanted you to see it first so we don't cut too much or everything back." Instead there is no shade anymore and if it ever grows back it will take years. Needless to say I was shocked once I walked outside to see the shade had disappeared.After the fact I was then told by one of the neighbors they decided to cut everything back this morning however shouldn't they had said something prior?.

So I might be rambling on a bit but I don't expect anyone to understand the little things those who are sick with a terminal condition enjoy because they don't walk in our shoes. They only walk in their own.

After that huge disappointing start to my day it only got more odd after some ragging lunatic woman on her cell phone texting came down the wrong way of the street going around 40mph and almost hit me head on. It was one of those situations where you see the inevitiable happening but all you can do is stop and wait. Thank goodness my Guardian Angels must had been watching over me because half an inch was all that was standing between myself and her car.

Yes. Its been a Friday the 13th, full moon kinda day. So you know what this gal has learned and will be doing from now on in this city right? Going back into hiding keeping to myself in this crazy city that way the only responsible person for any crazy or inconsiderate behavior will be myself. I haven't felt a wild hair coming on yet so I guess I am safe. Hahahahaha! Oh what a day and what an evening but as they say, "There is always tomorrow." 

WinkThank goodness for a new day! AMEN.


Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT
Updated: June 10, 2012 4:52 PM EDT
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June 8, 2012
Life Is A Lesson To Be Learned.
Mood:  chillin'
Now Playing: Day 789-The Final Road To Survival

If life is a lesson to be learned then maybe after going on 4 years of the spring and summer sunlight nightmare I would had learned to rotate my sleep schedule with the sun. Instead I ended up with a day of migraines, tremors and a few pop up seizures. NOT FUN. This also put a huge kink into the days schedule crossing off things to do like changing lots of information since we are now a married couple. At least the major stuff got changed yesterday. I call the rest "minor details" so it was up to my friend/Caregiver/Husband to finish the rest. Let's just call him Hubby now for short. Hahahahaha! I am sure to one individual, OK, maybe a few that term is burning a hole in their brains by now but you can't please everyone in life and for once I have learned to please myself. AMEN!

With starting the day having electrical shocks going through my head, spine, arms and legs I finally raised my red flag and called my Neuro doctor so they could try me on some new medication. The other seizure and tremor medications they tried me on didn't work. In fact the last three years worth of trying various types of medication didn't work and the only sure way to calm down the lightening was good ole fashioned Valium. Yes, it does work however since it has such a short life span in the body I only get around 4 hours of relief. What I need now is something that will keep me from getting into trouble when my Hubby isn't home seeing I don't have anyone else here in the city that understands nor has even been around me during a seizure. I do have a few friends that have but I can't put them into that predicament having to drive over and stay here at the house when they have family and children of their own. Hopefully my Neuro doctor and his staff can find one of the new trial medications that might work this time around so I don't have to suffer through the rest of spring and upcoming summer months.

Oreo has been hanging in there and doing a bit better each day. We both got a really cute card this week from my dear Angel friend down south. Oreo is so smart he actually read the part to him. Hee,hee,hee,hee...See, you can teach an older fur kid new tricks! So far we haven't had to increase his dosage on both medications but we still need to continue keeping a close eye on him. He still has occasional tremors and gets scared a lot which is normal they said since he is also losing his hearing. Its hard seeing him not feel well but we have been doing our best to give him lots of kisses and hugs. He continues to enjoy bonding time by my side while I catch up on my taped television shows. When he is ready to call it a night he jumps down to sleep on his huge floor bed. Littleblue has been doing a great job playing fur nurse to Oreo and even takes a few naps laying next to him.

My dear friend John contacted me today and was happy to say the big move out west is finally complete! WOOHOA!! He sent me a few photos of his new home and his fur kid Robie who clearly is enjoying the California lifestyle. It seems both of us are now experiencing the other side of the mountain. We have both been through hell and back and hell again through out the years so its been wonderful sharing all the recent great news with each other! We always joke around that somehow they must had switched cribs at birth because we are just like siblings. I sure wish we lived closer but since he is the first to make it out west it won't be too much longer when we will be following right behind. Hubby is more than ready to make the big move and continue positive changes in our lives. I couldn't agree with him more but unfortunately right now I must ride out this next medical challenge to see what the future holds.

I am continuing to embrace these winds of change and with it comes being a new Mom to little Erik who is five years old. We are taking things one step at a time but I am super excited to see what the future holds for all of us as one big happy family!

"Life comes with no guarantees, no time outs, no second chances. Don't be afraid to fall in love because every second wasted is a second of life you can never get back."


Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT
Updated: June 9, 2012 4:37 AM EDT
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June 7, 2012
Adding To The List Of Things To Do...
Mood:  d'oh
Now Playing: Day 788-The Final Road To Survival

This has been an exhausting week! So far the short list of things to do has now turned into a huge list. Thank goodness for both of us now tackling things together which hopefully means cutting the time in half!

Not that I don't have enough things to do my doctors have their own list now due to the inevitable surgeries. Today one of my specialists said, "I have to be honest with you. Either your colon comes out now or it comes out in an emergency surgery because it can't stay in forever. Your new symptoms show us the condition of your colon and parts of your small intestine are rapidly progressing and to be honest thing aren't looking good." One would think having any surgery whether major or small wouldn't be that difficult to prepare for but trust me, there is a huge difference between the two! Add onto the problem that I didn't do too great during and after my last surgery which has me once again concerned. They wanted to remove my colon three years ago just a year after my last surgery "however" the nightmare experience my two surgeons and their team experienced when they opened me up wasn't too pleasant. In fact the surgical op reports with photos and video scared the next surgeon right out of the next surgery. I fear this new surgeon and her team might react the exact same way. Honestly I just don't want to be put into any emergency surgery position without being prepared. Sadly I have learned living with a chronic condition is just that, "Living unprepared."

With the heat upon us starting this weekend its our goal to finish the big "To Do List" way ahead of time before my next treatment which is right around the corner. We haven't had much time to celebrate being newlyweds however there is plenty of time for that later on. Right now we are just enjoying some peace and quiet by tuning out the reactions of some individuals in the city who were never supportive to start with and instead surrounding ourselves with those who were always there for us and cared about my happiness and over all well being. Thank you my dear friends! Thanks to the never ending kindness and support of strangers our fairy tale wedding will continue later this summer at Indiana Downs horsetrack as we re-exchange our wedding vows in front of friends and GP family.

What did we do the rest of the evening? Our top priority was changing our Medical Power of Attorney and Living Wills. Out with the old, in with the new. I have lived a lot and learned a lot but one thing will never change is the true importance of happiness. Marrying your best friend and someone who always stood by your side when others were causing you nothing but harm is very surreal. Love sometimes is blind but eventually you wake up then realize you truly deserve unconditional love with no boundaries. A coward will stand and take the heat but the honorable will fight back and protect you.

Thank you for protecting me and loving me unconditionally!

"Happiness Is Being Married To Your Best Friend."


Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT
Updated: June 9, 2012 4:54 AM EDT
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June 6, 2012
SURPRISE EVERYONE!-JUST MARRIED!!
Mood:  celebratory
Now Playing: Day 787-The Final Road To Survival

So the story goes about two people who became best friends who ended up falling in love, got married and lived happily ever after.

YES! That's me. That's us! That's my best friend/Caregiver who is now officially my beloved and wonderful, passionate, caring, nurturing, loving, supportive Husband who always saw past my Gastroparesis and accepted me for who I always was. Me-Kimberly.

I finally turned over a new leaf and with it I also turned over a new life. I finally found true love and with it my life partner and best friend. Life doesn't feel good. It feels GREAT!!

JUST MARRIED!  :)
Deputy Eric &
Kimberly Stegman-Dieckmann
Thanks to Indiana Downs Racetrack we will be holding our vow renewals derby style in the winners circle for our family/Gastroparesis family, friends and loved ones-September 2012.
www.gastroparesisawareness.com
*For future invite and details


Posted by GastroparesisAwarenessCampaignOrg. at 11:11 PM EDT
Updated: June 9, 2012 3:22 AM EDT
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June 5, 2012
Keeping A Sense Of Reality.
Mood:  a-ok
Now Playing: Day 786-The Final Road To Survival

 What a great and productive day! It started off with some wonderful non-interrupted sleep. WOOHOA!

The house repairs are slowly coming along. Not only was our house busy with workers but so was my neighbors. In fact there wasn't any parking left and most of the visitor parking across the street at the local park was also full. Mark got the new basement storm doors put in today and Ivan finished up the foundation digging so the new drain system can be installed later this week. We also got involved by helping to clean up a bit afterward and filled the area up near the new storm doors with topsoil. Some of the wildflower and sunflower seeds didn't take so luckily they still had seeds at the store down the street. Looks like we have some additional planting to look forward to this coming weekend!

After speaking to my neighbors Daughter today its now apparent none of us escaped the horrible May storms and over abundance of rain which caused massive foundation problems for everyone. Even my neighbors house fell victim to basement flooding. They have foundation repairs of their own to catch up on later this month. That makes so far five houses in a row. YIKES! Mark told us today that since this used to be farm land with lots of surrounding water our basement was literally built on guess what? WATER. DOUBLE YIKES!! It seems the entire street used to be nothing but a lake. Now most builders will not build over water seeing it defeats the purpose and nothing good can come up of it but guess what? Foundation and water problems later on down the road. I guess we can all rest assured each of us are not alone fighting to literally keep our houses staying afloat. Hopefully all the repairs will keep the water out so its not continuing to come in.

Talking about literally feeling like your living in a castle with a moat! Let's just hope this concrete moat doesn't collapse!

My new surgeon's office called this afternoon regarding my appointment for next week. Seems the call center got some incorrect information and they are just now finishing up receiving all of my medical records. Collecting records from 17 specialists over the course of 8 years is a HUGE FEAT! So huge they asked to reschedule my appointment that way my new surgeon and her team have everything they need before sitting me down to go over the next few steps. I guess its for the best they rescheduled so they have all the necessary information on my past surgeries and tests. This might also prevent me from having to go through duplicate testing. Two weeks won't change much so no biggie. I can wait and hopefully my intestines can too!

Since it was such a busy day and my friend was stressed out we decided to hit the park and do some walking. Really he was already BEAT but I talked him into it seeing I need to walk down the rest of my last Drano treatment. Hahahahaha! Talking about being tired at work. He is going to be hurting!! It was super nice outside and there wasn't but a few people at the park. It almost felt as if we reserved it for the evening. The air reminded me of a crisp fall day. I even got to feed the ducks and flock of geese again however this time we knew better to shake the bag of bread so we didn't get attacked by all 30 of them. Hahahahaha! By the time we got near the other side of the park the sun started to set and it was picture perfect as if God ordered it up for us. One word: BEAUTIFUL!

"It's good to be...ME." 

 -Gene Simmons


Posted by GastroparesisAwarenessCampaignOrg. at 11:56 PM EDT
Updated: June 6, 2012 2:14 AM EDT
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June 4, 2012
When One Door Closes Another Shall Open! :)
Mood:  hug me
Now Playing: Day 785-The Final Road To Survival

Although I may "sometimes" read my horoscope I am never one to assume they are all the time 100% accurate HOWEVER it seems this week my birth sign has fallen right in line.

"Make use of your amazing energy on Monday! Get an a.m. jump-start and power through a potential monumental day!"

Could this week be the start of finally turning over a long awaiting new leaf?..


Posted by GastroparesisAwarenessCampaignOrg. at 11:11 PM EDT
Updated: June 5, 2012 12:32 AM EDT
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June 3, 2012
SUNDAY AFTER-DRANO FUNDAY!
Mood:  chillin'
Now Playing: Day 784-The Final Road To Survival

Its a chillin with the villain which includes Mr. Drano aftermath. This also means it was a low-key day while my friend did most of the indoor and outdoor work around the house. Not to forget running a few errands and restocking me on lots of Slimfast and other fruit/protein drinks. At least the last purchase lasted me for two weeks since most of them I still have to water down so they don't come back up or get stuck through my twisted intestines.

Since we got a pretty good rain the other day my peach tree is doing GREAT! We are going to have lots of peaches by the middle of next month. There are a few that the wildlife have gotten ahold of but those are peach seeds that didn't take to start with however Littleblue didn't find them too tasty. She picked one off a hanging branch today and after one bite into the extremely tart peach seed she quickly dropped it. Hahahaha! Same with the mulberries in the backyard falling from the branches. One tart bite and that was it for her! Hahahaha! The birds and other animals however have been quickly eating them so its been nice not having to clean them up this year.

This weather has been perfect! I sure wish it could stay in the 70's year round. Its also been great weather for outdoor sports. My friends son has been keeping busy all weekend in between his games. This was just too cute of a photo he sent me not to share with Angel kitty by Christopher's side. Hopefully the rain will stay far, far away for this upcoming week that way the rest of the outside house projects can get completed. They are calling for rain showers this evening into tomorrow however maybe it will stay farther down south. We just want dry skies so the new windows and drains can be installed. AMEN! Since there still is a slight chance of rain my friend had to fill one of the new holes back up with dirt on the side of the house this evening because the LAST thing we need is a flooded basement. Key and goal for very successful upcoming surgeries is: NO STRESS. I plan on taking every precaution to keep it that way too!

Oreo has been stress-free the past few days and a very relaxed puppy. His hearing seems to be getting a bit worse but he can still understand you because even fur kids know how to read lips. The medication has been helping him out a lot and he has been slowly catching up on his sleep. It has also been helping him with the pain and today he seemed to be moving around a bit better. I am hoping his Veterinarian won't have to increase his dosage since the medication can cause liver failure. Why can't they make medication for people and fur kids without causing other problems I will never know but I assume its a smart way for the big pharma companies to make more money. Might be why I have run into a few faulty needles with my medication. They are too busy making money instead of safe products.

It is amazing that people who think we cannot afford to pay for doctors, hospitals, and medication somehow think that we can afford to pay for doctors, hospitals, medication and a government bureaucracy to administer it.   -Thomas Sowell


Posted by GastroparesisAwarenessCampaignOrg. at 10:23 PM EDT
Updated: June 3, 2012 11:02 PM EDT
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