Mood:  hug me

 In remembrance of our dear Angel Impy

Our beloved Impy, 84 young years old was called to Heaven on July 31, 2010

Impy, we know you are still keeping a close eye on the GP family from Heaven. May you rest in peace, know you are deeply loved and will forever be missed.

-The international Gastroparesis family, friends and loved ones

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: August 2, 2012 3:14 AM EDT

Share This Post

Post Comment | Permalink

Mood:  not sure

Here we go again folks....Nothing more ANNOYING than having to once again prove to others that I am SICK. The best part of proving this FACTUAL information is when the courts keep records of your SSD hearing. The down side is the continued mental anguish and overwhelming stress once again that I have to endure due to others. More like, "Lack of education and awareness." What I "should" be doing instead is focusing on my health which is #1 priority but instead I am once again having to dig up my past in which I found it literally came full circle. How so you may ask? In the pile of records from my attorney I came across some medical records in which I was told I "might" want to look at when I have some time. Time? Plenty of it seeing I don't get out much when your drinking Drano then battling the aftermath for the next five days. What I came across was not only shocking but extremely sad FACTS. Fact-I was not just a sick infant but a sick adolescent. Fact-I had GI disturbances through out my entire life. Now finally the surgeons FACTS had finally made sense! The questions that still remained unanswered are where is the biopsy reports and where are the specialist reports since I would had been referred to a GI specialist as a child?... Right? Ummm?... Could had things been prevented decades ago? Answer-possibly. Its not a mystery any further wondering how nerves in my GI organs had mysterious just stopped working. Between medical reports that dated back as a young child on top of the list of my severe GI problems per FACTUAL SSD reports have finally started to make sense for not just my doctors but most importantly ME. I have been sick all of my life and sick means the GI road/path that progressed now into my adulthood.

After reading through a third of my records all Eric could do was highlight the damning facts and hug me. Its horrible enough to once again be accused from Aliens (Since I have to wait to figure out next week what names I can say or plural content) but also once again having to defend myself with FACTS amidst just finding out I was born into this world as a sick child and there are missing puzzle pieces yet to be explained. Why didn't anyone let my specialists know the extend of constant GI problems through out the course of my life? The rest of the day left me feeling nothing but B L A N K. The saddest part is maybe I wasn't made aware of my childhood being sick?.. Trust me, I remember some but most is buried behind closed doors in my brain. I'm not sure at this point with the relentless stress that continues in this city if its a good idea to continue reading the rest of the medical records so instead others are going to read the rest through out the week. S I G H...

If anything good to come out of this nightmare is that now all 17 specialists have factual proof not just a "feeling" that my GI problems started decades ago and they always said, "There is no turning back." Its no wonder surgeries never worked and my condition continued to progress out of control which now involves numerous organs. It might be good God made a fighter when he made me because the weak would had already caved in a long time ago!

FACTS for any one who wants to challenge once again that I am not sick because I am SICK of defending myself on FACTS:

The claimant has the following severe impairments: bowel dysmotility disorder, irritable bowel syndrome, chronic abdominal pain, depressive disorder, hypotension, syncope with migraines, cervical and lumbar spine degenerative disease/changes, Idiopathic Gastroparesis, chronic pain, seizures, trouble sleeping and worsening of issues of chronic pain and gastrointestinal issues, which can be "very" distressing. 

The claimant's gastrointestinal tract does not function properly. Further, the claimant is limited to eating only certain soups and liquid foods and is down from a beginning weight of 170 pounds to 117 pounds on March 26, 2010.

FACT: Now I am down to 108 pounds after my intestines are cleared with Drano aka Hell-In-A-Jug on a two jugs per week treatment basis.

Last FACT in order to defend myself from those in the city who doubt I am sick: The undersigned finds that SANTA CLAUS (Since I have to wait a week in order to find out if I can use the word JOESMOO) is well qualified to render an opinion as to the severity of the claimant's condition. SANTA CLAUS'S opinion is strongly supported by the evidence from the treating sources, and is consistent with the objective and other evidence of record. SANTA CLAUS also referenced treating source records in the file (ARM LENGTH) dated from April 2008 which report that the claimant has had multiple medical issues for which she has undergone a series of several studies and treatments, including recent referral for a second opinion from a specialist in another state (Exhibit 47F). UPDATE-Make that three clinics.

(For those who don't know, they don't hand out SSD for free. The Social Security Act does state in one of a few FACTS that disability or a combination of impairments can be expected to result in death.)

So....After two seizures within the past five days there are now two doctors appointments for this coming week along with a new temporary (my doctors are hoping) specialist who will be desperately helping me to control the anxiety attacks I have been experiencing for the past week due to hellish stress. This of course isn't from my Idiopathic Gastroparesis or connected problems. My "Hero", "Caregiver", "Stronger-Half" and "Baton-Handler" is still standing strong and holding his ground (make that my ground too). Yes, no one knows quite how he does it but guess what? He does and for that he deserves an award of high honor! AMEN!! We have been receiving an overwhelming out reach of support this weekend from friends and GP family in and out of state. Thank you to those who have stopped by to bring homemade goodies and for this gal the amazing homemade cream soups!! YUMMMMMM! Diane, (since she gave me permission to use her name and would rather not be called Mrs. Santa Claus) let's just say I am keeping the recipe! Thank you also to my loving and supportive "Caregiver-Hero-Supporter's" friends around the city and at work who stand strong by our side offering endless support. It goes to show you there ARE STILL GOOD PEOPLE IN THIS WORLD and thank the Good Lord for that!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: July 30, 2012 6:15 AM EDT

Share This Post

Post Comment | Permalink

Mood:  quizzical

This is going to be an educational blog this evening folks so get out your pencils and pens.

Someone brought to my attention today the worldwide famous book, "The Diary Of Anne Frank."

The Diary of a Young Girl is a book of the writings from the Dutch language diary kept by Anne Frank while she was in hiding for two years with her family during the Nazi occupation of the Netherlands. The family was apprehended in 1944 and Anne Frank ultimately died of typhus in the Bergen-Belsen concentration camp. The diary was retrieved by Miep Gies, who gave it to Anne's father, Otto Frank, the only known survivor of the family. The diary has now been published in more than 60 different languages.

The interesting facts are that names of her family and friends were used but altered a bit. In the published version, names were changed: the Van Pels are known as the Van Daans and Fritz Pfeffer is known as Mr. Dussel. Some personal friends were quoted as "Friends." I assume what one is trying to say is there were never actual names mentioned. Just like life every day isn't perfect. Having an autobiography means there will always be people named unless you live in a cave. Hey! maybe even cave men back in the day had cave-blogs, heeheeheehee... Just think, if everyone in the world got mad about the facts of life there would be no amazing and heart felt autobiographies such as "The Diary Of Anne Frank" to publish nor would there be blogs, Twitter or other online social sites.

Another interesting fact is: As of February 16, 2011 there were over 156 million public blogs in existence and included in that count are personal blogs.

A dear friend brought it to my attention today that Twitter is considered one of the most popular online blogs. It is a way for others to post smaller online diary inserts without having to write a lot. Some sites, such as Twitter, allow bloggers to share thoughts and feelings instantaneously with friends and family, and are much faster than emailing or writing.

A recent proposal idea by Tim O'Rilley suggested that one of the most successful ways to have a blog is to ignore the Trolls. Another person suggested not using names which prevents one from being sued, use a plural instead (friends, family, relatives, groups, colleagues, associates, neighbors, etc).

I guess what I am saying is blogs have become extremely popular and new blogs are being created every single day. They have also become a very therapeutic way for medical patients to express their true thoughts and feelings. I have also heard from others regarding human life still living on after their loved one has passed through their personal blog. Many enjoy going back through their loved ones photos or personal every day accounts of life as it is. Please also keep in mind that being sick isn't fun nor a party. You must understand there will always be ups and downs in the life of a patient and those around them. My own personal blog has been extremely therapeutic to not just myself but thousands of others around the world. Many have reached out over the past few years to thank me personally for keeping it "real" in which ways they could relate.

As of today this blog has reached out to over 127,000 readers and the Gastroparesis Awareness Campaign website has filled over 1,911,000 server requests. If it wasn't for the out pouring of support who's to say where I would be in my GP journey, but thanks to everyone I am still here and keeping the great fight alive! Thank you to all the celebrities, government officials, religious leaders and my Angels-the GP family for always having my back and believing in ME.

God Bless you all!! Xoxoxoxo

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: July 29, 2012 4:55 AM EDT

Share This Post

Post Comment | Permalink

Mood:  celebratory

THE GASTROPARESIS AWARENESS CAMPAIGN TEAM WELCOMES
THE AMAZING AND TALENTED 
...
"JACKIE CHAN"

Posted by GastroparesisAwarenessCampaignOrg. at 11:11 PM EDT

Updated: July 28, 2012 2:58 AM EDT

Share This Post

Post Comment | Permalink

Mood:  hug me

This definitely is starting to become a Friday the 13th weekend although there is one problem...Its not Friday the 13th! AHHHHHHH!! That is even scarier! Nah, but today sure was scary as all heck!! YIKES!

Since everyone has been having fun with the faces of Drano today we welcomed ole TEX from Texas. Scared little guy isn't he? Sure delivers one heck of a punch though! Trust me, doctors and surgeons don't put you on this stuff because they think you will enjoy the taste and weekly treatments but instead you gotta have some pretty messed up insides to have to endure this toxic poison. AMEN! Ask the doctors who work endlessly for me time and time again battling another insurance company who stepped up to the Drano plate. Maybe instead of a simple medical necessity letter they need to instead just have SSD send the arm length of records they have on file. AMEN. Ole Tex sure did put some smiles of fellow GP friends today and sometimes that's what life's about. Making others happy when you can't control all the stress around you in your own life/environment.

It was a HELLISH day of stress and honestly there is no words in the dictionary to describe the level of stress that is around me in the city. When you have to call upon your specialists to warn that maybe this treatment is going to go down south all the way, same place where ole DranoTex is from then you know its not going to be a good day or HECK even evening. Sleep? I see that NOT happening. Treatment? Stress means treatment that already has a hard enough time getting through my intestines which is now once again going to take ten times longer. Stress and medical conditions don't mix. I know I keep sounding like a broken record but PLEASE PLEASE PLEASE WORLD understand stress can kill.

"There's already an established link between chronic stress and long-term illnesses like heart disease, gastrointestinal distress, and other illnesses, newer research shows that chronic stress also makes you more prone to illness, makes those illnesses worse to bear, and you'll feel sicker when you do fall ill. The moral of the story? Manage your stress, find ways to alleviate it."  -Researchers at Carnegie Mellon University

So after taking lap after lap around the house this evening a dear friend of mine decided to come over and watch some television with me. At least if things continue going farther down south I have someone here who can help because I am on my own in this city and the only one I can count on is Eric who understands the aftermath with treatment along with seizures. My friend has known me for years so they totally know what to expect and I am beyond appreciative for all their LOVE and SUPPORT! Since we don't plan on catching much sleep it looks like this might be an old school Atari or Wii night playing my favorite game, "Operation!" If I keep playing maybe by next year I will be surgical certified. WOOHOA! Wishful thinking...

At least we got a jump start to making the big move out west which we have set a goal to happen within the year. Everyone around me in and out of state have all agreed, "You both need to get out of dodge so you can live a peaceful life again." Instead of driving out of state instead I might find the most expensive pair of Nikes and RUN LIKE HELL FOR MY LIFE! AMEN!!!!

Given all the unnecessary/relentless stress I am VERY LUCKY to still be alive and God is GOOD!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: July 27, 2012 3:45 AM EDT

Share This Post

Post Comment | Permalink

Mood:  d'oh

 I weigh HOW MUCH?!!

 Yes, it was another day when all my body wanted to do was sleep, sleep, sleep but instead we had a full days schedule which included doctor appointments, door repairs and friends coming over to visit. No sleeping all day for this gal but maybe another time later this week. Littleblue once again didn't help matters jumping back and forth between the couch and her den located under a side coffee table with her stuffed animal fur babies. At least Oreo doesn't do the same thing and instead finds complete comfort on his extra large floor bed.

The tremors seem to be more coming than going and after today's visit it appears they won't be leaving anytime soon. Same goes with the constant weight loss. 108 pounds is a number I don't remember seeing since I was in the 8th grade and even then I don't think I was that small! HOLYMOLY!! If my paralyzed and stretched colon wasn't still inside me they estimate my weight to be less than 100 pounds. NUTS!! As one doctor said, "You are all stomach." Ummm...More like stomach and intestines! Its no wonder Eric complains that I need smaller pants that fit and don't droop but lets be honest in saying it took me months just to find the three new pairs I bought this spring. They are all size 2 which means the next juniors size down is 1 or 0 and they are hard to find. I guess we know what Santa will be bringing me this holiday season. Eric even lost four pounds over the past week but his is due to all the stress that he has been taking off my shoulders. Its hard keeping up with the constant walking and moving around in order to not get myself in trouble-GP wise but I also lack the calories now since having to water down the heck out of everything I consume on a daily basis. 

One GP evil -vs- another.

Oh well....All I can do is continue doing the best I can do and at least my specialists totally understand! They don't want to go the tube or IV route seeing my compromised immune system couldn't handle any line infections. That would only make things a million times worse for me and for them! Lately I am just flat out TIRED but its only to be expected. Friends were over today and even commented on the fact I didn't look so good. Maybe since I see myself in the mirror everyday I don't see the changes as much unlike others who don't see me on a daily basis. I still respect their honesty because I can't deny the fact that if my insides are changing and not for the better my outer appearance will also in time suffer. Thank goodness for hair care products, wigs and make up but sometimes you can't always hide the bags and darkness under your eyes.

Since the tremors haven't been too kind this week once again the doctors have me pushing my treatment back another 24 hours. Not like it matters to me seeing I can't stand drinking that foul, warm, ocean, chlorine-toxic nightmare anymore. The only positive out of each dreaded experience is it does help to keep me out of trouble. This evening we only did half of a walk. Eric said, "I think this is the shortest walk we have ever done." NO JOKE! The rest of the evening consisted of running a few errands and I even bought myself some new fingernail polishes. What gal doesn't enjoy a few new shades for the upcoming fall season?! My colors, "Black polish with a bottle of festive sparkle topcoat." Call it the BLAH color mood of choice. Need I say more?... 

Hopefully this evening Miss Littleblue will be less of a jumping bean laying next to Mommy. If tomorrow finally brings my next treatment then I will surely need all the sleep I can get! AMEN.

You know when you get knocked on your A%% and you just can't take anymore....
Well there are people that are always there to pick you up... dust you off...and lend you their hand to help....  -FB Friend

Posted by GastroparesisAwarenessCampaignOrg. at 11:55 PM EDT

Updated: July 26, 2012 4:12 AM EDT

Share This Post

Post Comment | Permalink

Mood:  chillin'

Wow! We are almost into the month of August! My how time flies by and soon enough my favorite seasons will be here, FALL & WINTER! WOOHOA!! I can't wait because this constant heat and humidity hasn't been too kind to my body. It seems lately I have also heard from other fellow GP'ers who are taking a brutal body beating from the wicked heat. Speaking of heat...since my intestines are starting to reject the Hell-In-A-Jug/Drano and its now taking almost a week per treatment to make its way through my paralyzed GI organs they now have me watering everything 85%+ down. This makes even "pleasant" things taste BLAH! Campbell's healthy choice low sodium cream soups now taste more like watersoup with a hint of flavor. I tried tomato the past few days which takes me 2-3 days just to consume one can seeing I have to add so much water that one can now becomes two. It honestly has about 5% tomato taste and 95% water. I was given the heads up to attempt my next treatment tomorrow seeing today I wasn't feeling well with the constant intermitten pain followed by severe fatigue and darn seizure aura. I'm not used to taking more than one nap through out the day but let's be honest by saying my body is officially B E A T! At least I was able to do some walking later this afternoon followed by a final walk with Eric and the fur kids this evening. Any little bit of help from gravity counts for us GP'ers.

My GP Angel Eliana got a late birthday gift from her ole GP Auntie Aunt today via mail. I am so glad she really loves her rainbow wall maker. TOO CUTE! I told her Mom this evening that if Eliana wakes up and finds a pot of gold in her room then this gal is getting one for herself! Hee,hee,hee...Eric thinks it would be a great idea to buy one for little Erik although I have a hunch I will be making the most use of it. Anything to soothe the soul during bad GP days and who doesn't love rainbows?!

It appears the last of the foundation work around the house is now COMPLETE! Three months later we now won't have to be walking on egg shells when it rains or wondering what type of flooding will happen in the basement. The only last few things left to do are finishing up sanding a few spots from repairing drywall and replacing the bottom door piece so we don't feel any drafts from the outside creeping in. It's a HUGE relief for both of us!! The new white stones also match the seashells I have around the landscaping from prior years vacationing down south in Florida. I can't wait for fall to enjoy our homemade sandbox in the backyard we made last year. Hopefully by then the temperatures will be much cooler and the honeysuckle bushes the neighbors butchered way too far back will be taller for some much needed shade. I also can't forget another reason why I love fall because it means plenty of relaxing evenings by the firepit. A H H H H...

One of my friends here in the city has been enjoying some down time with his Son taking in a few local Red's games. It would be great to join them but he totally understands I just can't do the heat with my Gastroparesis. The last time I did see a game was when I went with his amazing family and I remember having a blast! This of course was yearsss ago. Oh...the things I sure miss doing before I was sick...It can be down right depressing if you let it and frustrating as all heck too! I am sure many other patients can relate with the lack of energy and complete change of life. Its overwhelming at times but I still do my best to find other things in life to enjoy like watching my new wildlife kid outside. Yes, instead of Mr. Groundhog we officially named him "Mr. Happy" today because no matter how bad of a day you might be having just seeing this cute and huge ball of fur is enough to make you smile. Mr. Happy is getting so used to us and his daily feedings of Cheerios and Carrots that this afternoon he came within 8 feet without even flenching. Now that is TRUST! Since he lives in the front of the house we make sure to keep Oreo and Littleblue on a leash when letting them outside. When they play in the backyard we first do a complete walk around before letting them out just in case Mr. Happy is chomping on the grass.

Just the little things that we both find joy in when it comes to living a GP life. In the old fast paced lifestyle I used to live before GP I doubt I would had ever had the time to enjoy the many small blessings from God. Amen.

"The world is round and the place which may seem like the end may also be only the beginning."
-Ivy Baker Priest

Posted by GastroparesisAwarenessCampaignOrg. at 11:58 PM EDT

Updated: July 25, 2012 2:57 AM EDT

Share This Post

Post Comment | Permalink

Mood:  bright

I want to say "Thank you" to my dear fellow GP friend Jennifer who inspired me from her own blog regarding daily struggles living a Gastroparesis life. Over 2 years and close to 900 blogs later here I am also hoping to inspire other patients whether it be Gastroparesis or any other medical condition to never give up and continue fighting the good fight no matter what life throws your way! I also hope my blog will inspire other patients to create their own personal story regarding their journey in hopes of helping others. I always said if you never truly suffered for years then you will never truly know pain. If people don't like seeing what its like living with Gastroparesis and all the ups and downs including photos then don't read about it. I am sure others with various medical conditions have also run into people who don't understand the word "Awareness" when it comes to medical education on their own personal blogs or other social network sites. 

CASE CLOSED.

To the others who take the time to read blogs and other avenues when it comes awareness with any common or rare medical condition this gal says, "Thank you!" No one puts their time nor limited energy into sharing their life suffering from a medical condition for attention. They do it in order to help educate others on the seriousness of needing advancements in medical research. This involves a condition I personally suffer from called, "Gastroparesis" as well there are many other orphaned conditions in the world that also need any attention they can get in hopes of a future cure.

"Awareness!"

Caringbridge is a great organization for patients who suffer from various medical conditions. They also have a place for terminal patients to create their personal journeys through a blog. https://www.caringbridge.org/signin

I want to send out my thoughts and prayers to Mary Valastro and family upon her recent diagnosis of ALS. What most don't realize is ALS can cause Gastroparesis and Gastroparesis can cause ALS since they are both central nervous system disorders. I encourage any family who has a loved one suffering from ALS or any other medical condition to view the recent episode of "The Cake Boss" which aired this evening on TLC. This is a prime example of how family should unite helping a loved one in time of need. HUGE HUGS to Buddy and his entire family who are truly Angels!  http://watchseries.eu/serie/cake_boss

Posted by GastroparesisAwarenessCampaignOrg. at 11:45 PM EDT

Updated: July 24, 2012 4:27 AM EDT

Share This Post

Post Comment | Permalink

Mood:  vegas lucky

Gastroparesis should have another name called, "RUSSIAN ROULETTE." If this darn weekly Drano aka Hell-In-A-Jug treatment had a name it would be called, "RUSSIAN ROULETTE THE EXTENDED VERSION."

That's how it feels to me anymore. Treatment now lingers for so long that by the time I start to feel better I have only two FREE-DAYS days before the next treatment begins. Tell that also to my angry insides and fused intestines that once again called for emergency care since darn Drano is having a hard time even with the assistance of gravity. The amount of constant moving is enough to make anyone feel exhausted! Ask the ER doctors who don't know how I do it but do have one question, "How much longer do you think you can keep doing this?" Hmmmm....that is the exact same question all of my specialists are also asking. The answer is I don't know because my brain is still in fight mode although my body is starting to slowly win this game called, "Russian Roulette."

Maybe this was just another day that "wishful" thinking would had just told me if I didn't have to keep my body moving I should had just stayed on my couchbed with Littleblue and her stuffed animal fur kids. Yes, she is still in Mommy-Mode which now makes her stuffed animal puppies 2 weeks old as of today. Hee,hee,hee...Shes still cute as ever and also continues to help her own Mom from thinking about the constant pain of her twisted organs by staying closely to my side.

The heat and humidity have once again arrived today. The wildflowers are sure loving it but so are the weeds. Before having to make an emergency visit Eric spent the early afternoon hours helping to run through two rechargeable batteries for the weedeater then baking in the sun while cutting the grass. I always try to help. Key word "TRY." When once again your brain wants to do what your body is not capable of very seldom will you succeed. I guess the rest of the weed eating will have to wait until tomorrow once both batteries are recharged but at least he was able to finish up the rest of the other yard and outdoor projects.

Cuddles kitty who lives with heart murmur problems is doing as well as one kitty can be. Oreo's medication continues to help him have less frequent seizures. Pumpkin and Precious kitty are finishing up medication for allergies which has been causing them sneezing and watery eyes. Bear kitty has been healthy as can be and continues to play babysitter to Littleblue's stuffed animal puppies.

Me?

I am here. I am still breathing, walking and living the Gastroparesis life. Family stress? Well...you can't have it all right? Some things in life never change and hope can sometimes only be a four letter word but I am doing better by not beating myself up about things I can not change. Eric said, "Just remember you must continue to hand the baton over to me because your body doesn't need the stress. Most people would had given up after the first, second or even third try reaching out to family but you never gave up so be proud of yourself." I agree and for now I must continue being focused on my health because there is only one me.

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: July 23, 2012 4:11 AM EDT

Share This Post

Post Comment | Permalink