Monday, August 8, 2016

Gastroparesis Awareness Month Folks! 8/8/16

Hi everyone I am feeling much better today (obviously no make up and stuff states I am not great but I am good in comparison.)
So, with all my healing from surgery and chaos I totally forgot we were into August... which means two things A my Sissy's Birthday!! (I hope you had a great one) and B that it is Gastroparesis Awareness Month!! (A link if you want to learn more or help Gastroparesis @ https://www.g-pact.org/gastroparesis ) What??! Where has the time gone?! I think that clears up how sick I have been feeling.Because if you follow me you know how glued to this internet thing I am! If you haven't seen my latest update, I am doing well with surgical healing. I have been off pain meds since, last Wednesday! Phew! Just Tylenol and ibuprofen for this little woman, I was on such a high dose of pain meds post surgery... when my pcp told me I seriously couldn't believe the dose!! It was many time stronger than morphine. What!!??? I don't think I honestly would have let them send me home on that if I knew about it. (They did nothing wrong) I just don't like to take that strong of medicine. Ya ya if you have seen my posts I have a million medications I take but let's be rest assured 98% are for POTS, thyroid, kidneys, autoimmune diseases, ( regular stuff that's not McCrazy drugs) now sometimes I do take some pain meds at a very low dose and some meds I take for my POTS are in fact anxiety medications or brain altering meds... (Like anti seizure/nerve pain) But my brain is sick... (Not physchologically, neurologically... My  autonomic nervous system is malfunctioning) and they put me on them for POTS issues like for instance my heart rate was always 160bpm resting and up to 260bpm just standing up... Obviously they had to do something about that or my poor heart would get worn out. I do wish I could just throw my medications in the trash some days but it would not be wise or helpful. I need the treatments I can get. Every choice I make isn't easy. Sometimes there is no real option you just do what you have to do.(like putting forgien objects into your body like a feeding tube and a port a cath)  But I have had many days full of wonder and thoughts of if I made the right decision long term. Or if I don't do a treatment how would that effect me long term? It's a catch 22... And now we will talk about Gastroparesis awareness. I have Gastroparesis (GP) due to my (POTS or Dysautonomia. Whatever you want to call it) I had both for many years and I could eat but at one point, I basically lived off cheez-it crackers and a few bites of a meal a day. No Gastroenterologist knew but majority called me crazy, depressed, young, anorexic, hormonal,  attention seeking, wasting money, that I should never step foot in a doctor's office of any kind again, one diagnosed me with panic disorder even (that one really tried and cared. I think he knew I had POTS as he was a neuro too. Looking back he warned me that I would be full of tubes of all sorts of I didn't get help. Yet, what he did was not the proper help for my condition) I lost him about a month into treatments due to him having a medical (stroke or big heart attack I am not exactly sure which one and he retired immediately) then I was reffered to a psychiatrist and to a counselor. (For the wrong diagnosis of an anxiety disorder. A little fact here... almost all POTS patients are wrongfully diagnosed with an Anxiety disorder before finding a correct diagnosis of the neurological condition POTS as it seems like anxiety to an untrained eye. Plus anxiety meds will typically serve some type of improvement in symptoms due to our autonomic nervous systems not working right. Not because we are anxious or "crazy" but because it helps calm the nervous system a bit. However it's not going to cure or help us we have a lot of retraining the body things that have to be done.) So of course if a doctor writes you a script for an anxiety medication and you see the slightest bit of improvements viola! They think that's what is wrong. (Studies have even shown the past few years that physciatrist's offices are turning into a dumping ground for a lot of patients with neurological disorders due to misdiagnosis. Luckily in my case after months of counseling and treatment with no typical improvements along with in time knowing me and not quite meeting the criteria, they told me to pursue a diagnosis that I was differently sick. I did stay and learned coping skills and stuck with it (as most patients with POTS do. In my humble opinion we deal with a lot of disabilities and that's hard so we get  help to deal with all this monster condition that no one knows about. Most doctors have no clue what it is. I am constantly explaining what I have. They don't even know the name. And it's legit complicated. I know you are thinking that It's new or rare. Actually it's just rarely known about. It's been around since the civil war (they think civil war syndrome was actually POTS) they assumed back then younge men would go to war and from the trauma they'd get this condition. However with time and back home in a calmer environment some improved and some did not...Teens and pre menopausal women are the highest risked patients upon when they "get" their pots or it shows itself. They don't know a whole lot. They do know if more doctors knew and diagnosed it sooner than 6 plus years on average a lot more POTS patients could go into remission with treatment and live better qualities of life (now that's not every single case) but they are linking that together. Wow this turned into a POTS awareness post. Okay back on track! Due to all this POTS I have Gastroparesis. From  what I have learned you can have idiopathic Gastropareis (meaning they have no clue why it happened, it just did.), neurological (my case), and diabetic Gastroparesis (a secondary from diabetes, again they don't really know why this happens in those cases sometimes.) a lot of Gastroenterologists won't even treat it. A lot don't know how to test for it. Which the test for Gastroparesis is called a gastric emptying study...(I had a MRI showing my whole GI tract spasming years before I knew I had GP a clear indication I could have a motility issue. That doctor told me to go somewhere else and call him when I got it figured out and gave me Bentyl (which I still use and helps) p.s. I did call him back. Post my gastric emptying study that clearly stated I tested for slow motility and did in fact have Gastroparesis. My specialist (who specializes in this very thing was like, "oh you are okay.") I would have believed her if my nutritionist had not hours before accidentally reveiled to me I had Gastroparesis (she didn't know I hadn't gotten the results yet) this was after not eating for three months even a sip of water came back up. All I did was throw up. I did get three ivs of normal saliene per week. And that top notch specialist ignored me even when she knew I was dropping weight, not eating, had slow motility (GP), I even begged for blood work to really check if I was truly nutritionally stable as she said I was. She wouldn't do anything for me. I cried for hours after that appointment (you get crabby and more emotional when you starve) I came home (severely googled Gastroparesis and the guidelines for diagnosis and the board of the gastric emptying test clearly indicates I have Gastroparesis) and saw my new pcp who I explained all this too... she looked it up too and  immediately put me onTPN nutrition via Iv form. Basically I was feeding my organs and I didn't use my GI system at all!  We did it to save me and to give me a few weeks or so to find a new GI to treat me. To our surprise that want so easy...(And put in a gastric jejunal tube so I could feed into my small intestine and get nutrition by bypassing the stomach and still using the rest of the GI tract. I called at least over 30 GI offices in the state and repeatedly was told "we don't treat that here." When I would ask why every time I was told, "that the doctor or doctors in that office just didn't want to." I couldn't believe it. I had no one to give me a tube and most importantly no one was willing to treat a serious condition. (well I found one crack and he was so jacked up, he was not touching me) There isn't adequate treatment for GP you can take nausea meds, meds that are suppose to speed up the speed of the gastric emptying which are mostly not FDA approved and you have to get them out of the country, (they for some reason worsened my case. I assume it's because I'm neurological), you could get a gastric stimulator,  then some have (they are starting to not do this now and it's more of a thing of the past but they remove the stomach), you can go on the GP diet and if you fail that diet (there are two GO diets low fiber/low fat/small portions or all liquid) if you fail you get a feeding tube. (Basically)  A lot of people die because of Gastroparesis (even with tubes of all sorts) sometimes they never even get diagnosed. That is so not okay! (Luckily due to a friend of a friend I got in with her GI as she asked if he would give me a gj feeding tube (he agreed) he is brilliant (he took my case and treats me as he actually doesn't normally do these cases with his very special speciality... He is 1 of 2 GI doctors in the country who can preform a special procedure for pancreatitis) and I still see him to this day and we get along great. I love his out look and he isn't super dry and he gets I am young. Plus he jokes around which I love when doctors aren't super serious. But they do have to be serious enough too. (However if they are blunt and OCD I really like those types too.) I guess bottom line they just have to have legit compassion and be real with me. Gastropareis is scary and I am sick and tired of seeing people I know pass away. Seeing them get so sick and literally starve to death. STARVE! I know Heavenly Father has a plan for us all. We all go through trials for reasons. I know we are here to be trialed and tested for the next life... I believe when it is our time to pass it's God's timing... He takes us home. But I can't keep watching person after person have so many complications, have no quality of life, live in beds, have others raise their kids, live in hospitals, look like skeletons despite all their efforts, enter hospice before they are thirty. Then pass. We always say in the GP community when someone passes that "another angel earns their wings"-that's true they do and it is typically a few per week. Most are very young...but I feel with the world we live in we can work on better treatments and give people quality of life. Let us eat real foods not live off formula and ivs... Not be told how crazy, dramatic, anorexic, Ect we are due to a lot of pure ignorance in the medical world. I know the world isn't perfect and can't be. I understand doctors are human too and simply can not know everything but there are many Gastroenterologists in this world turning their heads to Gastroparesis because it's not  easy  to treat and has not a "cure". We live in a society of brilliant people. More can be done if people even are aware but a lot aren't. I don't write this to feel sorry for me. I wrote this to give knowledge and hopefully save lives, help others get a correct diagnosis, and hopefully let others endure less sufferings. Gastroparesis is mean and rotten. Let's help people not starve anymore. Sincerely, -Chelle  here is the link to my YouTube video I made last year for Gastroparesis Awarness month...of my experience of year one with Gastroparesis diagnosis... view here if you haven't already or want a refresher  @ https://youtu.be/sM27ewIDtnI