@iamokaynow Twitter (Deb)
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Gastroparesis:Fighting For Change firstname.lastname@example.org
My Gastroparesis/MotilityDisorder/ POTS CIPO Colon Inertia Migraine- Mitochondrial-Malabsorption Journey While keeping an #IamOkayNow Attitude with Advocacy
My walk began, with full blown, “it can no longer be ignored” around1989 with the first migraine, but I didn’t realize it. The first migraine I had was a reaction to Indocin. I thought, at the time! And it may very well have been! What you also need to know? Is that I was an avid exerciser, biker, jogger, and really worked at being healthy. I Always had sinus, tiny little silver darts around my eyes upon standing, and constipation issues but did my best to get around those without slowing down. You would not see me near a doctors office~~ until it interfered with my life! I did not know my life was slowly changing. Which one winter it did with pleurisy… My Dr just shook his head, when I said, ” I can’t run… Because it hurts to breathe,!” And he says, ” well yeah!”
One thing which might help to understand my personal tenacity? Is to know, I was hit straight in the driver’s side door in 1990. I was leaving an observation of elementary school to then drive two hours for exams towards the end of a semester, to finish a degree in early childhood education! My car was totaled, my tooth knocked out, lower front jar broken, muscles pulled from the back of my neck. All I could think of,? Was “this is not! Happening right now! I am finishing this degree!” I would get my mouth wired, go home, return to the hospital with concussion symptoms and AGGRAVATED! But would return to my classes in a neck brace.
Okay, so fast forward to many years later and I begin to have non- stomach viruses. They were also linked to a period of time with massive migraines, sinus polyps, walking pneumonia, two sinus surgeries, allergies, and then the hunt began.
1996 I had a hysterectomy and appendectomy because of repetitive ovarian cysts bursting along with endometriosis combined with ongoing -unrelenting GI issues. Things would calm for a period of time. Then I would go into a fight to keep my job to only lose it again with nausea, vomiting, diarrhea, abdominal pain recurring again with bouts of constipation. The dehydration and migraines with a merry- go- round of symptoms hiding themselves from the normal tests made diagnosis difficult back in
1996 – 1998. I would be fired from my teaching job… Get another job .. Then be fired from it while in a hospital bed. Then while in the gastroenterologist Merry-go-round … a precious Doctor told me … “I am referring you to a motility specialist.” I immediately asked him, ” do you think I am crazy? What kind of doctor is that?” Because to be honest, this was getting a little crazy and at this point, I had never heard of a motility specialist!
1999 He reassured me and this phase of my journey would lead me to Dr T A. .. Thank God! Who removed the question marks and got everything stabilized enough to do testing and begin the diagnostic phase. The answers weren’t easy.. But the point of this whole story is … I would not have found out, I had gastroparesis, a paralyzed colon ( pseudo-obstruction) , received help for these migraines ( abdominal based) and went on to peel back the layers of a mitochondrial malabsorption disorder…. Neuropathy. ( I probably left something out … I live in a semi- state of denial) The first set of doctors were the “best” but clueless! The second tried, but referred me, and that led me to the “third time is blessed! ” The third attempt I was blessed enough to meet a Doctor who had trained under Dr T.A.
2000 He would go on to send me to South Carolina to Dr CL and have a colectomy – which changed life measurably. Did not change the facts, but made it less miserable! So, from a diagnosis in 1999 to today trying to stay alive~~~ the theme is persevere one moment at a time. Doing what is necessary is not easy, nor do we always have the strength to do so, but it is better to go forward .. No matter how tedious or difficult! So, on this synopsis of a journey which did not accept the gastric electrical stimulator, I have gone through a PICC line placement from 1999 – 2005, port-a-cath placements from 2005 – present. ( on fifth port) I celebrate today, but pray for a better tomorrow and research with diagnosis codes which allows for treatment without hearing ” we know you need this, but because others have messed up – we have limits which have been put on us” Then you ration your meds.., and the insurance company decides not to pay for an item which meets the criteria for which they are basing their denial! We are survivors of this journey- have perseverance ~~ even in those moments when we feel our well is empty!
Update: I had a small bowel obstruction in July 2015. It was in the upper section of the small intestine and was twisted with so many adhesions the surgeon could not count nor remove them all. She removed a small section of my small intestine and as many of the adhesions as she could. I was in the hospital from 7/4/2015 – 7/24/2015 I then had another partial obstruction in August. I was in the hospital (ICU fist night) 8/14/2015 – 8/25/2015
Then again in Nov 27 – Dec 9, 2015
I have intestines too twisted with adhesions to have tubes for feeding leaving me with TPN as my only fall back and its innate risks of infection so I currently do hydration IV fluids D5 with potassium 3 times a week and my antiemetics. This protocol keeps me alive and for the most part out of ER’s.
#GastroparesisAwareness #CureGP www.curegp.com We really need everyone’s HELP! We need #GPReporters to tell their stories. My story is not unique. There are many of us & we need your help!
http://www.petition2congress.com/17439/ proclamation-to-establish-august-as-gastroparesis-awareness-month/ We did this y’all with the help of www.iffgd.org Dept of Health & Human Services Rep Gwen Moore & all of the current #Advocates & past #Advocates we stand on the shoulders of we have a National Health Observance Month in August on the Calendar http://healthfinder.gov/NHO/nhoyear.aspx?year=2016
A Petition to Designate Gastroparesis a Disability
Buildaquorum link to request Congressional Representatives Cosponsor HR2311 addressing the needs of the #MotilityDisorder #GastroparesisCommunity #IBS #FGIMD with research prayerfully/hopefully leading to #CureGP while giving a better quality of life during the period of much needed research with centers of excellence
www.dha.org have both been great resources/supports to us during our journey as patient/advocates along with www.agmd-gimotility.org
Note: I have an autonomic dysfunction #POTS without an official documented but Doctor criteria based diagnosed. Treated with Midodrine because what is dx’d my blood pressure dropping after standing.
Also a ? Of cyclical vomiting syndrome.
The layers and complexity of motility disorders are the precise reason we have to have more specialists, treatments, research, education leading, pursuing a cure!
In Victory We Advocate,
We as a #GPCommunity are doing everything we can on every social media platform available to us, along with local media, & branches of affiliates connected to national media — We are all #GPReporters the world has changed & it is possible now to promote, present, educate, & inform #GPReporting . We are about the movement, change, knowledge, empowerment, creativity of of Patient Empowerment to achieve goals like the passage of #HR2311. Doing & actions truly has taken Gastroparesis:Fighting for Change leaps & bounds towards #CureGP through the persistence of the official & unofficial #GPReporters Thank you💚💛 #GPNation