Tiffany Clements
Tiffany Clements

Please sign, not only for my child, but for everyone else out there suffering! Thank you sooooo much!

Lori Rollins Hall
Lori Rollins Hall
  • Tiffany Clements

You know girl I already have signed it. Let me knowif I can do anything else from this end. Luv ya. :)

Justine Putman
Justine Putman
  • Tiffany Clements

Can u do it for me? My phone wont let me. (Its not smart) and thats the only internet i have :/

Danny Hancock
Danny Hancock
  • Tiffany Clements

Done

Serita Marlin
Serita Marlin
  • Tiffany Clements

Signed!

Kat Eickhoff
Kat Eickhoff
  • Tiffany Clements

Signed

Gail Miller-Mccarty
Gail Miller-Mccarty
  • Tiffany Clements

Signed. :)

Tiffany Clements
Tiffany Clements
  • Tiffany Clements

Thank y'all soooo much!!

Tanya Taylor
Tanya Taylor

I see where I posted in July. I still do not have a dr to get the nutrition in. I'm 96-97 lbs now. I'm having charlie horses, not just in my calves, but under my tongue and neck, my right arm from shoulder to elbow. A vein in my right lung ruptured collapsing 2 bronchi, and since I'm allergic to all narcotics, with the exception of Demerol, MD hospitals will not give me anything. They are more than happy to give me drugs that will kill me, or make me break out in a bloody peppered rash,...

I see where I posted in July. I still do not have a dr to get the nutrition in. I'm 96-97 lbs now. I'm having charlie horses, not just in my calves, but under my tongue and neck, my right arm from shoulder to elbow. A vein in my right lung ruptured collapsing 2 bronchi, and since I'm allergic to all narcotics, with the exception of Demerol, MD hospitals will not give me anything. They are more than happy to give me drugs that will kill me, or make me break out in a bloody peppered rash, or puke my guts up without breaks. Ugghh. I'm still trying to find a dr. I see a dr this Tues, Oct 23rd. I'm looking forward to this visit. This dr came recommended by someone who's family is sick with this, and the dr actually calls them back. Not the nurse or secretary, but the dr. He has helped them out so much, I am hoping for the same. I'm not feeling so well, and having problems with my breathing as well. It is imperative they pass this Bill. Are we all supposed to live off of air and Faith while this horrific illness takes over more lives?

Chad Brainstorm
Chad Brainstorm
  • Tanya Taylor

You will get better Tanya

Tiffany Allison Churchill
Tiffany Allison Churchill
  • Tanya Taylor

Hugs where do you live? I know a good doc

Tiffany Allison Churchill
Tiffany Allison Churchill
  • Tanya Taylor

Oh I see u r in Maryland. I am in Savannah. He is a good doc but like all the docs who recognize this condition he can not get it figured out. I actually worked for him as his nurse and he diagnosed me. I landed in the hospital with an ng tube (sucked bad ) soon after it bit so bad I had to quit working. Just couldnt get a normal day of work done due to the frequency of the flares. So currently I just take it one day at a time and homeschool my son. Hope u have a little break soon.

Tanya Taylor
Tanya Taylor
  • Tanya Taylor

I've had to travel to different states to find a doctor. I still continue to schedule and go on appointments in Maryland hoping to end up with at least and Internist or Family Doctor in MD to keep all of the records straight with the other specialists. That way I don't fall between the cracks again. The effects of starvation I wouldn't wish on anyone. I wouldn't wish harmful things on anyone anyway. Not nice. I see a dr in NY this Tues. I am hoping to begin to find relief from the...

I've had to travel to different states to find a doctor. I still continue to schedule and go on appointments in Maryland hoping to end up with at least and Internist or Family Doctor in MD to keep all of the records straight with the other specialists. That way I don't fall between the cracks again. The effects of starvation I wouldn't wish on anyone. I wouldn't wish harmful things on anyone anyway. Not nice. I see a dr in NY this Tues. I am hoping to begin to find relief from the isolation of those who do not understand how every day is like Russian Roulette, when you get to a certain point from lack of nutrition. I believe I will get better too Chad Baynar. So difficult but still able to get to a point where I can hide how bad I feel. Thank you Tiffany Allison Churchill for reaching out. I was in Florida a couple of weeks ago, staying with and visiting some incredible friends who have GP (plus) as well. GP seems to be accompanied by several other common health problems. It gives me such a strength to help me get through. Thank you all for your friendship!!

Annemarie Jones Spiller
Annemarie Jones Spiller
  • Tanya Taylor

My sister-in-law has a gastric pacemaker, and I wonder if you would benefit from it as well.

Tanya Taylor
Tanya Taylor
  • Tanya Taylor

I've been wondering myself, but have been told not a candidate. That's what they say about the jtube, not a candidate because of the small intestine not functioning properly. I just don't believe so much I am told. So many contradictions from drs I know I need to make sure I do the research before every trying anything again. The tpn gives me the life threatening blood infections because of my allergies. I try so hard. I see a dr in NY on Tuesday. Hoping to have some answers and more...

I've been wondering myself, but have been told not a candidate. That's what they say about the jtube, not a candidate because of the small intestine not functioning properly. I just don't believe so much I am told. So many contradictions from drs I know I need to make sure I do the research before every trying anything again. The tpn gives me the life threatening blood infections because of my allergies. I try so hard. I see a dr in NY on Tuesday. Hoping to have some answers and more info at that point. I'm taking research and ideas as well to the appointment. Thank you for suggesting the pacer. I don't understand why that won't help me either. I just think too many doctors lacking education and I just need to find the right doctors for this. Until we make this known all over, we need to keep sticking together to keep giving each other info. Is your sister-in-law doing okay now?

Tanya Taylor
Tanya Taylor
  • Tanya Taylor

Annemarie Jones Bolender has she had a viral panel run. I think we need to all have viral panels run and compare results. Perhaps one of the viruses, or a couple of viruses are most common and creating most of this to begin with. Pulled out my Microbiology Book and Anatomy and Physiology book to do research from basics. Who knows what that will lead to.

Christina Fullington
Christina Fullington

Hi everyone! I just want to tell you a little about me! I have had 10 PICC lines and 2 central lines for TPN (fed intravenously) all 12 of which caused septic blood infections MRSA, VRE, and Klepsilla, and fevers as high as 106.9 with one time my kidneys and liver shut down and heparin induced thrombocytopenia (where heparin instead of keeping blood thin and PICC line unclogged my body reacted and started thinning my blood and my platelets dropped life-threatenly extremely dangerously...

Hi everyone! I just want to tell you a little about me! I have had 10 PICC lines and 2 central lines for TPN (fed intravenously) all 12 of which caused septic blood infections MRSA, VRE, and Klepsilla, and fevers as high as 106.9 with one time my kidneys and liver shut down and heparin induced thrombocytopenia (where heparin instead of keeping blood thin and PICC line unclogged my body reacted and started thinning my blood and my platelets dropped life-threatenly extremely dangerously low to 9,000 and they did plasmapheresis (taken your blood and cleaning it through a machine). I almost died from that one time and 59 days in hospital and 2 wks in rehab to gain strength. In 1 1/2 yrs time I was in hospital 53 times at my worst. I was told it was all in my head also like many gastroparesis patients-even after tests came back abnormal. It wasn't until 2004 until I got the gastroparesis diagnosis.. Lots of tests and also had gallstones and inflamed gallbladder removed which did not help at all! I have had two locations for peg/j and currently fed by peg/j. I am still overweight, but that doesn't mean I am not sick. I had a tumor and the treatment caused me to blow up to 400 pounds! I was also in an accident and they fed me high calorie to try to get me to heal. Well, I have as of today lost 171 pounds being sick with the gastroparesis. There has been times I would actually gain weight because I have an autoimmune condition called Pemphigus Vulgarus that causes huge saucer-size blisters on me and raw areas. During flare-ups, the treatment (cause me to gain) is high dose prednisone and Cellcept (an organ transplant rejection drug-they try to keep my body from attacking itself and I am so prone to infections!). This week I have somehow managed to lose 11 pounds. Does everyone on tube feeding have diarrhea? Gastroparesis does cause severe pain that cannot be explained. Now, I do have some good unexpected news. I was getting a spinal cord stimulator for my chronic pain and guess what! IT HAS GREAT REDUCED MY GASTROPARESIS PAIN! Now, I am not recommending everyone to go get them, but it helped me so much that when I was on the operating table and they turned on I started crying hysterically because the GP pain for 13 yrs disappeared! Here at home I can use the remote and when it really gets to hurting I can make the stimulator diminish the pain! Anyways, If anyone would like to talk to me about gastroparesis, feel free I have been through a lot like most GP'ers and I am homebound due to my other conditions. NURSEGJTubee-Christina

Alberta Eaton
Alberta Eaton
  • Christina Fullington

I signed.... I think. Firefox is preventing a "pop-up" window.

Dolores Claesson
Dolores Claesson

Many with gastroparesis have underlying infections. We see many people with lyme disease and its myriad of pathogens show up with gastroparesis.

Michael Parent
Michael Parent
  • Dolores Claesson

This is very true. I suffered from this condition. I sometimes still do but as I've treated Lyme Disease, it's improved.

Tanya Taylor
Tanya Taylor
  • Dolores Claesson

GP seems to come with many other medical complications. Ehlers-Danlos, Dysautonomia, Mitochondrial, and others I cannot think of right now. The Epstein-Barr Virus is so common in people, some of us are wondering if that virus, or a known or unknown virus(es), are causing this. Too much in auto-immune category. They have taken Gastroparesis out of the Rare Diseases Directory. I do not know exactly when that was done. As those of us who live with it know, this is not rare. It is just not discussed.

Alberta Eaton
Alberta Eaton

I signed.... I think. Firefox is preventing a "pop-up" window.

Judith A. Fleeger
Judith A. Fleeger
  • Alberta Eaton

I think Firefox is preventing me from signing also

Tanya Taylor
Tanya Taylor
  • Alberta Eaton

Were you able to eventually sign?

Sonja Winters Orr
Sonja Winters Orr

My name is Aaron fish I have gp I am 35 mother of 3 and had for 5 yrs I was diagnosed

Missy Sullivan Poppenger

It took courage and great strength to post this on FB, thank you, this is something that we all need to be aware of, it is heartbreaking that there are many who aren't able to receive treatment due to the fact that the Dr.s know very little about it, so let's repost and get others involved, whether or not you have it, I do know someone precious who has it and her life as well as her Paren'ts lives are an ongoing struggle for her treatments, for support emotional and otherwise. For me I am...

It took courage and great strength to post this on FB, thank you, this is something that we all need to be aware of, it is heartbreaking that there are many who aren't able to receive treatment due to the fact that the Dr.s know very little about it, so let's repost and get others involved, whether or not you have it, I do know someone precious who has it and her life as well as her Paren'ts lives are an ongoing struggle for her treatments, for support emotional and otherwise. For me I am happy that my friend sent this to me, it has given me more information of how she suffers from this disease.

Sharon LeBlanc Boaman
Sharon LeBlanc Boaman

Please help in finding a cure.

Kristi Jewel
Kristi Jewel

Please help... It isn't a way of life, even on a j tube my weight that went up is beginning to drop dangerously low again... It's weird but when I look in the mirror, it's not the tube that affects me the most, it's seeing my bones sticking out through my skin...

Mary Smith Geise
Mary Smith Geise

Mary Smith Geise.

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