Mood:  don't ask

Gastroparesis is scary. Its uncontrollable, unpredictable and for the most part unheard of. Its bad enough trying to juggle the constant symptoms and flair-ups that happen on a daily basis. Now add a few other problems on top of an already full plate. Needless to say most GP patients couldn't begin to list all their symptoms and connected problems because there are just far too many! I am not even sure if I could do so without going through over eight years of medical records. To me, that is the only way I would know for certain I am not leaving anything out. With each new problem I have been wise to hit it head on then find a way to live around the new issue brought on by my Idiopathic Gastroparesis.

When your digestive tract is damaged and nerves slowly die off it can trigger a host of various complex/complicated problems. Most specialists don't have the actual time in their busy schedules to fully explain GP complications to their patients. If one is wise they research on their own then bring their findings to their doctors. My team of amazing specialists learn just as much from me as I do from them. This helps all their future Gastroparesis patients. Call me the "Guinea pig." It all makes sense when you sit down, take a deep breath and connect the dots. It does to me. I do better "KNOWING" than "NOT KNOWING."

With trying to keep up on every little medical thing going on inside my body I clearly forgot about the large cyst I have on my chest. My hospital didn't forget. Friday they sent me a letter reminding me since I had a large cyst that was picked up last year on a mammogram-same time I had the breast cancer scare I now need for them to do a yearly check. GEES! I can't even hardly keep up with treatments and the constant pills I am taking to help boost my damaged immune system. Now I must pencil in another scare into my crazy GP life. So instead I added it to the kitchen cabinet "To Do" list, this way I don't forget. Seems anymore I have numerous "To Do" lists. Hahahahaha!

Second issue is the nausea, vomiting and fiery pain inside my stomach. I am taking Tums and now a prescription medication to help possibly turn off the fire. My GI doctor has a hunch all the juicing, Drano and severe GP might have caused an ulcer or stomach lining inflammation. We are hoping things will calm down within the week so I don't have to endure another endoscopy however it is what is it and if we need to go down that route then so be it. Won't be the first nor the last but treatment is a must with my intestines. I can only let so many days slide by holding off on the ole Hell-In-A-Jug however if there is stomach lining issues going on then that needs to put in front of the line. I started the medication this evening taking half of the pill first in fear the full dose might put me on the ground. So far the only side affect I am feeling is TIRED. That might be a good thing though because I can always use additional sleep.

I am not sure this week on the New Years Eve plans that were made in advance. It really just all depends on what my body decides. My mind says, "WHOAHOA! LET'S GO!" but my body makes the final decision and that won't be happening until the morning of New Years Eve.

So after four hours of house chores and playing holiday clean up I decided to have a Jersey Shore series marathon. Just one of many great gifts I got for Christmas. I already played my old school Atari system last night. WOW! Can we say it sure brought back many fond memories being young again and not having a care in the world! Ahhhh....Those were the days! When I saw the games Asteroids and Centipede I literally LAUGHED OUT LOUD! Hahahahaha!

If I could had looked into a magical crystal ball and foreseen my future living with Gastroparesis I would had surely thought it was a joke! I could have never imagined my life would take such a drastic turn and never be the same again...

Well enough with crying over spilled milk. Its time to get some hairspray out and fist pump! It's JERSEY SHORE MARATHON TIME!

Posted by GastroparesisAwarenessCampaignOrg. at 11:01 PM EST

Updated: December 27, 2011 12:04 AM EST

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Mood:  celebratory

FROM MY HOUSE TO YOURS, "MERRY CHRISTMAS!"

LET THERE BE PEACE ON EARTH

Let there be peace on earth
And let it begin with me.
Let there be peace on earth
The peace that was meant to be.
With God as our father
Brothers all are we.
Let me walk with my brother
In perfect harmony.

Let peace begin with me
Let this be the moment now.
With every step I take
Let this be my solemn vow.
To take each moment
And live each moment
With peace eternally.
Let there be peace on earth,
And let it begin with me.

"If there is no joyous way to give a festive gift, give love away."

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST

Updated: December 26, 2011 2:45 AM EST

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Mood:  d'oh

Another sleepless night. Chalk it up as the second night in a row of getting less than five hours of sleep. Try also bouncing back from treatment on limited sleep. NOT! Sure...I got to bed on time but was woken up with not just GP problems but loud noise. Need not go there...Once I woke up after the third time at 9:30am it felt as if my heart was beating outside my chest. This time I made sure to check my blood pressure seeing I was having horrible sweats on top it! Seems when your body can't recuperate and is being woken up for various reasons you can get some pretty scary readings. I was wide awake but with a pulse running 59.

No wonder I felt dizzy!

My friend was awake too seeing they couldn't sleep. They were also concerned with my blood pressure. That made two of us. We both decided something sure has to give and soon because I have yet to rebound and get much strength back since my last treatment. Its also important to get rest and lots of it! I don't see that happening for quite awhile but regardless if I have to check myself into a hospital for exhaustion and get some "FORCED SLEEP" it will be happening. Happening soon folks!

Forget any Christmas Eve plans. They went out the door at 10am along with getting any additional sleep. So much for seeing my extended family whom I only get to see once a year. Its sad but even more sad when things in life are out of your control. There was no need for getting upset or angry because all that does is make my condition a million times worse. Thanks but no thanks I have enough stomach pain, burning and intestinal pain with nausea/vomiting. I made a few phone calls once I finally could get my tired body up, that was at 2:30pm. I was able to get a shower at least so that was a good start but sadly I couldn't attend church where I go every year for candlelight service. Instead I had to settle for another church which is located right behind my home. Their service wasn't until 5pm. This at least gave me time to take a shower and throw on some clothes.

Can anyone have a QUIET Christmas Eve church service this evening? One that is filled with relaxing holiday music, not much talking and where everyone can leave me alone? Horrible when your body is that exhausted that you need to ask for peace and quiet isn't it? Luckily both me and my friend's wishes were granted. This church service was quiet, peaceful and had lots of relaxing music. It was the only thing I was able to gather enough energy to do today. Once we got back to the house which we could had walked back seeing its that close the fur kids were waiting to be walked outside and fed. They were also waiting next to their stockings for SantaPaws. The fur gang were EXTRA good this year so I just know SantaPaws will be EXTRA NICE to them! Littleblue likes to take charge and guard all the stockings while BearKitty just enjoys laying on the stockings and teasing everyone. Hahahahaha! Hey! animals are just like kids. They are far from dumb! My gang are super smart kids and each Christmas they get lots of toys, treats and gifts.

So what did I ask for this year from Santa? Nothing really because Santa still has yet to find a cure for Gastroparesis. Until then I can only ask for peace and rest for my tired body that way I can enjoy the beginnings of a better New Year. Amen.

Here's wishing you and yours a very blessed Christmas. May all your wishes and dreams come true!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST

Updated: December 25, 2011 1:18 AM EST

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Mood:  irritated

WHEW! Another horrible treatment aftermath! Does this stuff ever get any easier? Will I ever become a pro? I think NOT!

I was smart enough to start my treatment yesterday around 5pm but not smart enough to remember each Hell-In-A-Jug can hit you totally differently! Although this time around it was rather quicker than most it still gave me some horrible cardiac side affects which made it impossible to get any sleep! GRRRR! Around 6am it felt as if my heart was literally beating outside my own body. SCARY! Smart is knowing when not to hit the panic button and freak out...Kinda like this time. Forget taking my blood pressure, I would rather not know. Instead I stumbled my way back into the bathroom and sat there for around 15 minutes. By 10:30am I was back up again. This time vomiting. Not good! Most people would had woken someone up but my friend was sleeping so soundly and since its his day off I figured if things get worse within the next hour I would then wake him up. Luckily the vomiting subsided and I fell back asleep due to exhaustion. Around 11:30am I was right back up again. This time with horrific intestinal pressure and pain. If ever a time to hit the emergency room I was darn close to it but instead I took as much as my tired body could handle. By now my friend was up and a bit worried but we worked though the hellish Drano aftermath and here I am, ALIVE!

With Christmas Eve less than twenty-four hours away I am already exhausted thinking about all the running around. It used to be something I looked forward to but this was before becoming sick. Each year it gets harder and harder because my body just can't take all the traveling and stress. I don't do stress anymore. In fact I am finding myself quickly running away from it. AMEN. At this point a nice QUIET church service would be perfectly fine to me. QUIET is the key word because when your body is at the point of rebounding from weekly trauma it can't handle any excess loud noise or stress. I respect my treatments and take them very seriously so its a strategic game over the next four days when my body is at its worse. So far I figure I will just take things one day and one hour at a time.

Even during the holidays.

I do have plans but I always make sure not to make any promises I can't keep. Heck! I can't even think hour to hour anymore whether alone what time I will be at church or so and so's house. Seems I am not alone in the pre-stress moment of Christmas. Many other fellow GP'ers are feeling the exact same way. Its exhausting living with a condition that takes away one important part of living which is food but worse when you are juggling a million other things at the same time. Like trying to fit in with the rest of society and just being normal when you honestly just feel like pitching a tent and sleeping.

So this evening after a very long and tiring past 24 hours I decided to sit back on my couchbed, plug in my heating blanket, heating pad, grab my Pedialyte, Gatorade, SmartWater and Dannon yogurt shot and enjoy the holidays the most relaxing and best way I can! Watching Frosty, Rudolph and other fellow friends at the Land of Misfit Toys. Hahahaha! OK, so that did sound funny didn't it?

Here's to a better day and peaceful Christmas!

Posted by GastroparesisAwarenessCampaignOrg. at 11:30 PM EST

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Mood:  don't ask

Nothing quite like knocking three inches off your waist and the rest of important fluids out of your body a few days before Xmas! At least my holiday "To Do" list is slowly being crossed off one activity and chore at a time. Even though I have treatment today I still have things that need to be done. Of course things that can be accomplished while being stuck in the house. Same goes for tomorrow because anymore after doing treatments it takes me a full 48 hours to start rebounding. Some say I might be crossing a fine line since Xmas Eve is Saturday and today is Thursday. Although that might be true you still can't predict Gastroparesis. I could be feeling fine one hour then get knocked back down again the next.

I am still re-thinking strategy when it comes to my never ending hair loss. When I took a shower today I had to once again clean the shower out, shower drain and then vacuum the floor. Once I used some leave in condition I found myself vacuuming again. Sigh...Needless to say I might be literally ringing in the New Year minus my hair.

Thank goodness my friend has the next two days off of work. At least I don't have to worry about the dizzy spells I get after doing treatment nor the endless bathroom trips using my cane because I am too unstable without it. I don't care what anyone says but being an independent gal is nice but being sick and alone just doesn't work. There is nothing more reassuring than knowing you have help. Amen.

The only thing left on my holiday list to do is making a second batch of Buckeyes that I finished up this evening and going to our local Zoo festival of lights display. Maybe after this weekend the weather will finally cooperate enough to go but until then at least I have some rolled Buckeyes to finish up occupying my time being home-bound again.

CHEERS! TO ACCOMPLISHMENTS!

Posted by GastroparesisAwarenessCampaignOrg. at 11:31 PM EST

Updated: December 22, 2011 11:54 PM EST

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Mood:  irritated

So here I sit...Upper right pain that just likes to keep on coming back wave after wave after wave after wave after wave...This same darn pain usually is a clear sign of bad things to come. It also means my fused intestines are becoming blocked. Luckily I only have less than twenty-four hours left before getting a bit of relief from the almighty Drano. AHHHHH!

I think I broke an all time staying up record! I literally couldn't get to sleep until 6:40am this morning. Between back pressure, pain down my legs, nausea, vomiting and the darn upper right pressure pain I was just glad I stayed out of the ER! AMEN! Looks like a few days of clear fluids with a yummy diet consisting of chicken broth, popsicles, Gatorade and SmartWater. Speaking of SmartWater....Since my water level was low this afternoon after stepping on the scale I better take in more fluids before I get 'STUPID.' Hahahaha! Get it? "SMARTWATER" not drinking enough equals becoming 'STUPID.' Hahahaha! OK, nevermind.

Speaking of stupid...Sadly my friend got a wake up called "stress" this afternoon. Nothing quite like starting your day with four hours of senseless stress. You can never win any arguments with a concrete wall. Sadly I used to be like that but now I hit the ole turn off switch and conserve that fire cracker energy for better things such as days when I have rebounded from Drano. I also use that energy for taking a walk on my treadmill or washing the gray and my hair literally out of my hair, hahahaha! There isn't anything worth stressing about and if you have to go into hours at a time with the same topic over and over again then maybe you just need to end the topic. I felt horrible for him seeing he always goes out of his way to help so many people including myself. Honestly he deserves nothing but happiness in life not sadness.

My friend John down south has a little motto that goes something like this, "When you surround yourself with nothing but stupid people you in turn start to become stupid so don't fill your life with stupidity."

John has seen his fair share over the years of some very heartless people. His beloved Mother lost her battle with breast cancer and his Dad was diagnosed with Alzheimer's disease and now spends his days in a nursing home. John has no siblings nor any other extended family. I always tell John, "You have me and if you ever need me don't hesitate to call." He recently moved down south to pursue a better contractor job for the Army and has been doing great! Holidays for John are the worst kind because he says, "No one cares when you are alone. People are so focused on their own needs that they become oblivious to others around them." I sent John and his fur kid-Mr. OrangeKitty a Christmas card last week with a note thanking him for being such a dear friend. I got a reply back the other day saying, "Just wanted to say thanks for being you. You're kinder and show me more appreciation than people I have know for years. And everyone wonders why I don't like people. Hmmmm?...

After doing my best this evening to walk down the pressure pain from my intestines I got home and read the second part of my GP friend AnnMarie's story in the Florida newspaper. I guess we can also chalk up that so called, "Christian Hospital" as part of the stupid people. Shame on them! Here's praying AnnMarie has an Angel out there that can help her and her dear Father. Its tough being sick but worse when you want to live and you have to jump through a million hoops at the same time. AMEN!

Tavares woman's case underscores issues with Florida Hospital Waterman's
'charity care'

December 21, 2011
Second of two parts.

Hounded by collection agencies and getting increasingly sicker from a strange incurable disease, a 40-year-old registered nurse from Tavares turned to Florida Hospital Waterman for help paying her medical bills. AnnMarie Riehm hasn't worked for two years, so the hospital approved her to receive "charity care," which is paid by taxes collected from Lake County property owners. But it's not that simple. It never is.

Sunday's column pointed out the weird kicker in AnnMarie's situation: She has good insurance — at least for now — that pays for 100 percent of her treatment after co-payments that range from $15 to $250, depending on the procedure. So, this is all about co-pays. The hospital has been vigorously pursuing AnnMarie, who holds a master's degree in health-systems administration, through a collection agency, for the portion of her treatment that her insurance company doesn't cover.

Never mind that the amount Waterman collects from her insurance is far more than it would be if she were a Medicaid patient, for example, which she may be soon. Never mind that the insurance payment almost certainly covers the cost of the
procedures — and more.
So, how does "charity care" work? Prepare for a stroll down a twisting path.

Most folks think their taxes are going to pay for the care of desperately ill Lake County residents who have no insurance and are too poor to pay anything themselves. While that's often the case, Waterman also counts in its annual reckoning of "charity care" the co-payments that folks like AnnMarie couldn't make, even though she has insurance. That unjustly inflates the amount of
"charity" care the hospital provides the community.

What is 'medically necessary'?

The hospital says that it uses 100 percent of the tax money for charity care, so theoretically, tax money goes to make up for AnnMarie's co-pays. Of course, as hospital officials quickly pointed out, none of the hospital tax money paid by
Lake property owners is applied to any individual account. The hospital without question takes care of everyone who must have "nonelective" treatment that would "cause harm" if it were put off, Chief Operating Officer Carrie Fish said.

Its policy is to charge a co-payment of $50 for outpatient procedures or $200 for inpatient stays if the treatment isn't "medically necessary" for life. All that would change if a bill being filed by state Rep. Larry Metz, R-Yalaha, passes in this year's legislative session, which starts in early January. His measure would prevent both Waterman and Leesburg Regional Medical Center from supplementing payments from insurance, Medicare or Medicaid with tax dollars. It also would require them to apply for tax money in each individual case so that the money is accounted for and not just dumped into hospital coffers.

How would this affect AnnMarie? Probably not much. Already, the hospital considers her multitude of procedures as "not medically necessary" and charges her the amount the hospital established as a co-pay, which are similar to her own insurance's co-pays. What the hospital sees as nonelective also differs from what her doctors think she needs. The hospital view is far shorter. It thinks: Will this person die
this afternoon or perhaps tomorrow or early next week if we don't administer this test? Is it "medically necessary" to keep living? Her docs think like this: AnnMarie's condition is deteriorating. Her heart might be enlarging. We need to find out because that might kill her.

Unemployment has run out

That's how AnnMarie got into a little spat with a financial representative of Waterman over $15 for a test she ultimately had on Dec. 6. Sick and weary, she told a Waterman representative that her credit cards are maxed out, and her father, who shells out $800 a month to keep up her insurance, cannot pay more. The representative threatened not to schedule the test.

Frustrated and sick at heart, AnnMarie blurted, "When someone tells you might be dying, and you need this test, then it's 'medically necessary.' My doctors are trying to figure out what is going on with my body. I'm not coming in to have my cholesterol checked." Indeed, AnnMarie's financial situation is dire and she isn't being tested for fun. Already, she is sending $25 a month (from her dad) to whittle down a bill of roughly $600 from last winter's trips to the Waterman emergency room. Even though she is paying, the hospital turned the account over to a collection agency, which ceaselessly calls her home.

AnnMarie lost her job with the county's health department in 2009 and spent about 18 months collecting unemployment and trying to improve her health enough to go back to work. She moved in with her father. As soon as she cashed her unemployment check, she turned around and wrote one for her health insurance, but her unemployment benefits ended in June.

AnnMarie has a condition called gastroparesis, which causes her throat, stomach, small intestine and large intestine to work sporadically or not at all. Her condition worsened last winter, and she began suffering almost continual
bowel blockages, which can be fatal. Doctors thought removing her large intestine would ease the pain and allow food to move more easily through her system. She hoped to be back to work within months of the surgery. It didn't
work. They tried putting a pacemaker in her stomach that electrically stimulates nerves to open a valve between her stomach and small intestine. It is designed to be a kickstart to the digestive process. That didn't do much either.

Milestone birthday
At 5 feet 9, she dropped to 95 pounds and doctors began feeding her through a vein in her upper right arm. She is up to 102 pounds today.
Still, she has to eat a little solid food once a week to prevent liver and gallbladder damage. Usually, liquids just slosh around in her stomach while solids sit there and rot. She'll either vomit or begin what seems like endless trips to the bathroom for several days. Since her April surgery, it has become clear that AnnMarie will not work again, and she has started the paperwork to apply for a disability income from Social Security. If she were to receive disability benefits from Social Security, she could also receive Medicaid, which pays for medical care of people who are deemed disabled. If that happens, Waterman will be reimbursed for only 40 to 60 percent of the cost of her care.

The woman who played sports her whole life and ran marathons now spends her days in a recliner in her father's house, where she naps on and off and worries continually about how she'll pay for the solution that nourishes her. She is focused on beating her condition but is realistic about the enemy. Her trips out of the house are mostly once-a-week excursions to the grocery store or doctor visits. AnnMarie was always a happy person, and she reminds herself of that. Like most of us, she dreaded turning 40, an event that occurred Nov. 22.

"I always said, 'I'm going to hate turning 40,' " AnnMarie said. "When it happened, I said, 'Yea! I made it to 40!'

Posted by GastroparesisAwarenessCampaignOrg. at 11:40 PM EST

Updated: December 22, 2011 3:09 AM EST

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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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