Thursday, October 27, 2016

Another Update. Another.

I have been pondering my thoughts this week. I have realized that most my Doctor posts are frusterating scenarios... How about we take a minute and A. Thank all MY Doctors! I have a very hand picked few that make up my team. (And let me tell you, they are so awesome) all of them go the extra mile for me. They all have compassion and work  their butts off to keep me going. So thank you to all my doctor (insert big hearts)! I have learned a few things the past week or so... Zofran has been causing my massive migraines (what?!) I am thinking eliminating that out of my daily routine is good to offer some serious help! I also found (Tubies) that phenegran comes in a lotion! Yes, how awesome! I am working on getting my phenegran in that form. If your formula makes you sick (because we know Gastroparesis weens and wanes) water it down. Or if you drink pediasure, Orgain... or any of those drinks and are struggling to tolerate you can water them down. Who would have known? I was doing really good with eating by mouth. Well for whatever reason this week that came to a screeching hault... I also lost my appetite. Something I actually don't struggle with (you know I am actually one who struggles with feeling starving) I have learned to force feed as much as possible. And when that just doesn't cut it... Eating sugary something tends to make my body want to eat more (when it decides that food is not a necessity in life)   I also have upped my yoga practice. Especially before bed. I don't do workout yoga I do relaxation, destressing yoga. It works! I think it's important to tell the body to calm down with Dysautonomia when the body is constantly revved. Get that heart rate calmer, the head clearer. I seriously am starting to swear by relaxation techniques. (Not a cure but it makes a difference) I also have done cardio all week and I'm yeah after being sick for two weeks I did not loose it all (like normal) I have been able to crank out a mile a day of good cardio ๐Ÿ’ช. If you don't know already. In Dysautonomia/ POTS cardio and leg/core strengthening is as important as sodium to restore. Plus who doesn't want to be simply stronger? I should not have any procedures for 6 months if all goes as planned and my feeding tube behaves! (I believe if my tube behaves and I stay out of the operating room my body will have a fighting chance.) that's why I fell so hard this summer...I lost a tube and my nutrition did not bounce back... Then I have a virus. Then I had Endo surgery. Now I've had my tube replaced and we are crossing our fingers... lets do this folks! Seriously. Moving forward with life Dysautonomia can take a back seat! I am taking charge. (I have some big plans in the works and in my head) "maybe I'm just a little girl, a little girl with great big plans" -Who sings that??! One Big Leap of Faith... -Chelle 

Monday, October 24, 2016

A Positive Note

So with Dysautonomia Awareness along with any awareness comes negativity. Because being sick is not a walk in the park. There is the ugly side of chronic. But there also holds a really positve side through this journey! Like, I have been shown so many amazing things in this life. I have received many blessings and I will never take life for granted again! I have the opportunity to be a better me... I literally am getting the chance to take all my shattered pieces and I get to put them all back together again into a bigger, better, braver, stronger me. The me I did not even know existed. I couldn't have found this me without Dysautonomia. Did my life go as planned? No, but whose does? Heartache and disaster will strike at times. In those times we get to grow. We get to truly test our endurance. Just when I think I have none left, I suprise myself. Without God in this life I don't know where or what I would be and I can honestly thank Dysautonomia for the biggest, greatest blessing in my life. My testimony. My faith has exsoared what I'd ever thought possible. So, the next time you break and you can't fix it. It's going to hurt but in that time you are becoming a part of something bigger than you can see in yourself. You will be able to find comforts from Heaven. Trust Heavenly Father. He can see the whole picture. Especially when we can't. Dysautonomia was not in My plans but it was all along. I will never take a simple bite of food for granted. A drink of water, sodium, energy to complete a day, the ability to stand up, or any other simple bodily function again. Though, workouts are tough, treatments are frusterating, & Doctors don't always know. I am here. I am being molded into the Michelle I was always meant to be. I have missed a few steps along the way but for every no held a greater yes. Isn't it funny how we see Gods work in our life's when we look back? I am SO tired right now but what I accomplished today won't go unrecognized. I'm brushing myself off. I have been pushed down. Pushed to every limit. I have broke. But because of that... I get to stand up again. Even better and brighter and with so much more fullness and love in my heart for God's plan. The real importances in life. Stand upon your mountain top when you get to the top and look at what You accomplished! Be proud! Don't let your mindset be full of  the worlds opinions of what you "should be", unimportant items, or what you don't have. Earthly things don't matter. The kind of car you drive, the house you live in, or the clothes on your back do not make you who you are! Count those blessings. No matter how seemingly small. Hug your family tight. How many simple moments of memories do you have? Do you remember the lavish times or does your heart smile when you remember reading the little piggies book with grandma, baking cookies in the kitchen, eating lucky charms at the counter with Grandad, being held up to the buffalo by Grandpa, going to the moon with cousins on the tramp,  taking all the couch cushions off and stacking them up to jump on them, turning your bedroom window into a "drive through" when Mom told you not to, making pretend IDs and money to play house, going to Eds for candy, playing with homemade play-dough, Ect. the giggles, goofiness. Getting beat up by the "Olders" like when you got hit in the head with a rock or tripped on the red scooter so your bloody nose matched.  Leave your imprints on this world. The simple ones, the beauty of your heart... Those are the things people will be remember. Those are the best times. See the tears, feel the pain but you decided what it does to you. Let yourself become who God wants you to become. Don't let the destruction of this world break you. You are too beautiful not to soar. Let your heart and soul shine. Remember who you are! Love always, -Chelle (this song  is my anthem. Let your heartbreaks in life be beautiful heartbreaks,

Wednesday, October 19, 2016

Wrecker has Surgery 10/19/16

Me and Mr. Wrecker yesterday... He absolutely hates the nebulizer! I mean it really freaks him out! But I grabbed him up and snapped a priceless photo! (Look at that face, he was not having it) he ran like point one second after this was snapped.
This Dog means the world to me, he is always my little caregiving big hearted friend! Today we reverse...
Best Dog ever had sugery today (insert big frowns) We probably should have rescheduled but My Mom was off work and it was already appointed and we decided if we were going to have a hard week... We may as well get this over with too. (It needed to be done) So Wrecker had almost all his teethies pulled and is recovering. (Poor thing had an abcessed tooth a few weeks ago and lots of bone loss to most his teeth... Luckily we were able to keep the canines) So we are resting and I am gonna be his support this time! I have the best pup ever, his heart is the biggest! Let's both heal now buddy! And put this week behind us. Love you little Pup, sorry your teeth are gone (don't grow up yet, oh how I don't likenhownhe is middle aged! Does the world not know how he is like still a puppy in my mind?) Thanks to all who have reached out to me this rough past week! I truly appreciate all the prayers and support! (Think I'm having a better day today) .....I know I have some really good prayer senders out there... please keep a sweet friend of mine in your prayers. I know the power of prayer is great. God knows more then we do but he also helps us along the way! And I know he hears each and everyone of us all!  It's truly a battle to get care in our situations. Unfortunelty, no matter how serious. They are appreciated truly! XO- Chelle 

Tuesday, October 18, 2016

10/17/17 mystery weekend sickness found!

After spending two nights in the ER
Apparently with Spider-Man. 
Guys do you want some good news!?  I know I do!! I think we finally figured what's going on with this past weekend post surgery lung sickness! I have bronchial spasming... (Which is hilarious and annoying because every medical professional this whole weekend have been told from Me, "I feel like I am having bronchial spams." ) just Listen to me folks! I really do know what my body is doing ๐Ÿ˜Ž I am that cool. Don't doubt! Lol 
But to be honest it was a very hard weekend for me and my body was sick and I didn't have help despite my best tries. (Well and it was weekend so you know doctors have life's too) so that stretched it out further. I just felt horrible and it was like no one could hear me medically. It was like beating my head into a wall. And I knew something was wrong. I was getting worse by the day...I was in the ER last night again! (I really broke my running streak of not going to the ER) but we went in because on Tylenol my fevers didn't break, all weekend long... My fever last night hit 101 on Tylenol.
I was like shoot! (I did not want to go) but with having a port a cath and medical issues you have to be smart and safe (even when you don't want to!) and of course low potassium (low potassium is turning into the story of my lab work results lately...) i 
am literally now being a good girl and running an extra special potassium dose through my Jtube with a dash of formula so it looks well weird pumpkin orange. I am being a festive Tubie lol today (Tuesday) 
as I type. Gotta keep that potassium up ☝️.... Can I take a minute to say what an Truly Amazing woman my mother is! 
She is seriously the best Mom in the world!! She never leaves me alone through tough medical journeys. She never has ever doubted me when doctors did and she easily could. She still pushes me forward on my worst days. She sits and listens to to me on my weepy days. She isn't afraid to tell me to fight this beastly condition because I am worth it. She shows me how to pick up the pieces along the way. She reminds me when I forget that I can do this. She is there for my grouchy throw a fit about being sick/Tubie chaos days. She is there for all the good positive moments that no one else truly can know how something so simple in our life can make my day. (Like eating half a turkey sandwich) She is there when the odds aren't with us. She is the one who is always no matter what by my side.  
Even when she works full time and has work the next day she is there in the ED with me all night long! Mom, you are one INCREDIBLE person I'm so grateful and lucky that God made you My Mom! On of the truly most beautiful hearted ๐Ÿ’๐Ÿ˜˜Thank you Mom for all the million and ten things you do for me! I love you to the moon and back to infinity and beyond๐Ÿ’•. You are my rock in this messy life and you keep me going. Thank you doesn't cover all my Mom does! It never could begin to...there are simply not enough words for how many thank you's my heart holds for you! Mom you are my biggest blessing in this life xoxo ๐Ÿ’•                                             So I have 
bronchial spams diagnosed by PCP this morning and that means basically my lungs have been spasming. It is from the surgery I had last Thursday to get my GJ tube replaced. It just happens after surgery sometimes. I will take my breathing treatments and pray it goes away! (I think a week of treatments. But these treatments can very well mess with my POTS) My pcp also thinks fever is my body's reaction to the lung spasms... everything just is angry that I am sick. This body needs to recover and chill. But feeling so relived! Because it is truly worrysome when you are sick and you know it, but your body doesn show it! Ay yi yi! (Actually my body did show bronchial spasming the ER visits missed it my lungs wheeze through the stethoscope) okay let's try and get better now. Capiche?. Lots of Love, Chelle 

Monday, October 17, 2016

Update 10-17-16

Well... SUPRISE! I had a tube change and now I am sick. I haven't been up to posting anything. I went down to Phx for an ultrasound last Wednesday... (All results were well. Celebrate that victory!) Then the following day I had a tube Change. I woke up with a cough (which can be normal and thought,  "Okay true"... But I remember thinking to myself, "but I have never woken up like this before." (And I've gone through many. My feeds are in half. But climbing back up slowly. Replacing the tube helped for sure because I'm not tasting meds and formula! (Idk if GI really checked placement since it was being pulled anyways...) he was busy... So idk (I don't like when I get told that by medical professionals. I was just going through the motions... Idk why the need to tell me that. I was waiting patiently. I had no complaints... I have a life too. I have an appointment.  I am paying for a service.) then by the time they wheeled me down stairs I started my famous Dry Heaving. So fifteen minutes later we got to call them and of course they only gave me half a dose of anti nausea! Those ones know better than to give me a half dose. Please folks! So that calmed things down. And about 30minutes post leaving the hospy I went to take Bentyl and my tube was upside down. (Now I have a low profile tube. That's where the problem Lies... You can not have it upside down because the tubing on the out side has a twisting locking mechanism. So they twists into place and lock. Well due to the
Upside down-ness the tube would not stay connected. Which is not only going to feed everything I own formula ... it would lead to putting me in danger if I were to be asleep and small intestine bile were to start coming out of my J tube. Those are vital!) so we called and I got to go back And my GI took his hand and twisted the stupid thing the right way and it hurt pretty good (it also repeatedly returned to upside down and I'm still making it not be upside down)  so I'm positive it was actually put in upside down... And I have always been preached to never ever twist a j tube! You mess it up inside! Well idk why this time that was okay to do.? We will see. They said it needed to be broken in like a shoe from being in the box...but we moved on with life and the next morning I woke up sicker than a dog. I had a big pots flare amd this stupid coughing and pain in my ribs (lung) and despite my best efforts all day I ended up in the ED all night long. And I didn't get good care. I am still sick with my lungs. Idk what is wrong PCP was too busy today to see me so i can go to the ER or I have appointment tomorrow... Yeah... This is what happens... Oh and a lot have asked  why I had the tube changed. And I haven't ever addressed that! You have to have them changed out every so often because they will get worn out and break. Plus for two weeks prior I wasn't  even managing a can of formula a day so something was off with the old tube... But yes they have to get changed. It was not for fun (wink wink) that's my update  lots of love and well wishes for all! My fever just got higher.  Tylenol won't break it... 4 days of this fever that will not break. I could use some prayers today for sure... This situation is breaking me. I can't manage to have medical care. I don't know what I am truly suppose to do any differently... It is really hard on me... It's a rough reality.... I have to call the shots without the medical knowledge. Doctors are putting it all in my lap. It's not my place to make these choices.... That's why I have them. But I can't find any of them the past 4 days -Chelle  

Tuesday, October 11, 2016

Tube change coming soon 10/11/16

Though this week is nerves for me... I choose faith in God's plan for me. He in fact knows the whole picture when I do not. I may have a broken body. I have to seek treatments. I may need tubes. I have to have procedures. But no matter what he is there for me. He knows. So yes, nervous is me but I think it's normal and I may be nervous but I will walk in faith, with the Saviour by My side this week. 
Okay, I am having surgery for my feeding tube to be exchanged (this guy above is moving out... Look at that hot mess! Seriously this tube has been a royal pain constantly.) for a new one (low profile) on Thursday.
(This is a low profile GJ tube. The tubes them selfs on the outside actually come off when not in use.) I am excited for two reasons... 1. My new tube is a low profile button tube. I won't have to see it or tuck away a long tube that shows icky bile. Oh and a clamp! A clamp!! 2. I think the tube I have now is malplaced at the moment as I struggle with intense nausea with feedings. That sickness stops when I pause feeds. I also taste medications I flush into my j a sure sign it's backing up into my stomach somehow instead of staying in the jejunum. (Small intestine I feed into) ... Well hey there are 3 reasons! I also have a nice slab of painful scar tissue. Only with this tube have I ever had any scar tissue. (So the doctor could laser that away if it needs to be.) ... The kicker is I am nervous because since my last surgery the end of July (afterwards)  my ability to eat by mouth changed a lot. In a good way. No rhyme or reason... (Now that was a much bigger surgery and I was out for hours verses 15ish minutes.) That's neuro for you! It does not make sense but hey!! we will take it! So I have been eating a little and just enjoying my time as the doctors have told me to do.... it can change at any time. They told me to just enjoy it now... So in the next 48 hours though my diets strict I am pretty sure I will eat all I can tolerate. (just in case)I wake up to no bites or sips Gastroparesis ville. (We don't know that will happen but well I woke up from my last surgery with better GI functions.) But I am being positive and praying that it continues to do "better" and that I will feel better after (hopefully) fixing my j tube . That will allow me to better feed formula and not go around without good nutrition. (I actually hope my tube is malplaced because otherwise we have a hurdle to jump and figure out what's making me so sick.) My nutrition has been bad for a good two weeks. I can't eat veggies and I can't eat fruit and I can't eat meat. Literally. They are too hard to digest... So though I try... I really can't... In the first place eat enough by mouth to stay alive and the nutrients aren't even well rounded at all (though I try to round my best nutrients out)... Another thing bugging me is the worst... Not the last time but the time before (so 2 tube changes ago) my anesthetist (who I know now I am only to have a doctor of anesthesia over me with my POTS) but he was a fruit cake and I never cared for him. He had the attention span of the dog off of the movie Up ..."squirrel"... (Literally in pre op he walked away as I was talking to him. Me and my Mom were lookin at each other and though we both were concerned we whispered, "squirrel") He took me to the lab and put me out before my doctor came in the room... And while putting me out he started hitting my arm and yelling at me that something was wrong. My arm was splotchy and red (probably POTS blood weirdness as My arm was fine later) he told me as he was hitting my arm,"to not fall asleep. He needed to know if I was okay." (That was frightening and apparently traumatic) because uh he pushed anesthesia through me and I fell asleep. (Despite my scared to death efforts) I learned a very valuable  lesson that day. I will never ever go forward with a procedure if I feel uncomfortable in my care ever again. Then I found out later he gave me an anesthesia  that should never be used on me with my condition. (So that has me nervous as all could be.)  I woke up to my doctor yelling at that anesthesia nurse... It's what woke me up actually. Then my doctor kicked him off his services... But no worries I won't ever let another do that to me again. I will wait for someone else to take me... I will speak out. So that's my update. Understandably. Nerves. -Chelle (P.S. My sweet friend is having a procedure on her heart today so please send those prayers to her today!! Thx) 

Sunday, October 9, 2016


I have been re-listening to General Conference this morning. I know sometimes that some people that are not members of the LDS Chirch can become irritated or annoyed by our Wonderful Loving Missionaries. I think sometimes they think we are trying to tally up member count in our world wide church. As members we know how important missionary work is. I know what a blessing it is. What an opportunity it is in our world... But I love this quote by President Russel M. Nelson ... This is why we have Mormon Missionaries! It really is! (Mormon Missionaries A.K.A Elders of the Church of Jesus Christ of Latter Day Saints. Are members of the Church of Jesus Christ of Latter Day Saints who selflessly dedicate (typically) two years away from all their family and friends, in a whole different part of the world or country ... to serve a Church mission. Missionaries give every minute of that time to the church to do God's work. They put their lives on hold to do the Lord's errands. They do many selfless works and also give their whole time to help spread and teach the word of God and his Son Jesus Christ and our Church. They teach of the Book of Mormon And if desired with permission, they baptize new members.) Happy Sabbath, may you feel the Savior love for you, peace on your souls, and happiness in your hearts!-Chelle                                           President Russel M. Nelson's talk Quote: "That is why our missionaries leave their homes to preach His gospel. Their goal is not to increase the number of Church members. Rather, our missionaries teach and baptize10to bring joy to the people of the world!11"     
(If you want to listen to that talk by , here is the link.)

Wednesday, October 5, 2016

Faithfully God's Timings, hope for healing

Every time I see these autoimmune posts my heart gets so happy! (I did not always believe in autoimmunity as the possible cause... Until recently, when I sat down and listened to a doctor who had been studying This very thing... He made all my "questions" disappear because he had legit answers to them during the hour Lon presentation. It changed my thoughts that day. I felt strongly confident. Like why when I was on immune suppressants for two years did I not have improvements for POTS... (Well they explained there in that study., has to be a specific dose to work at all and they have other things in the works as well for autoimmunity, and I am seeing these links below weekly or more.)... Another thing I used to not love was that my rarely known disease did not have a lot of research... The past year holy cow have amazing people worked together to help us patients! Not just in our country but we have a world wide data base where our researchers work together from country to country. This gives me hope in today and hope in the rest of my days here on this earth!  This is why knowledge by doctors, and others is so important! If thy know they can better diagnose and know how to help... People can learn and get more funding for research... The more research the more they learn. The more they learn about a little known disease the better they can treat... The better they treat the better my life. This may sound weird but I have a really strong faith that I won't be cured but the next 5-10years they will in fact find better treatments to improve my quality of life with this condition! (An many others) Every time I've been praying about this disease and healing the past just few short months. That is the answer I receive. I also had a moment during conference that I truly felt this was reinforced into my heart... I will walk in strong faith of that and wait for "my day" to come! #hope #faith #beleive #GodCan when we can't provide -Chelle

Tuesday, October 4, 2016

I am NOT done fighting Dysautonomia

I am so tired and it's still morning... I am sick of having Dysautonomia. I am sick of having tubes. (That Dysautonomia gave me) I am sick of fighting with doctors and their staff.  I always end up having to fight and worry over the littlest things. They typically get turned into big things for reasons I truly can't understand. All I can assume is they don't understand... So they over complicate the simple, and get confused along the way. Fighting for care typically gets easier after a diagnosis. That is not the case for Dysautonomia patients. Because A. We (our condition) is not known about by doctors... We pay the price. We aren't know of... That makes our doctors typically afraid, confused, or they don't believe us. They also simply do not know what to do. Our "treatments" or I should say our best attempts of treatments... A.K.A a shot in the dark...We do have available are weird, to say the least. They make doctors look at us like we have lost our minds. (Sadly that's the first judgement and they typically stick to it.) I am so tired of fighting for care! Even something as simple as a little virus for me turns into mad chaos. (Physically  Viruses can tend to make Dysautonomia worsen temporarily or even permanently.) when I walk into a hospital with an infection or virus, I don't get the typical treatments like the others around me. Despite the regular illness making my Dysautonomia fly off the handle...(very high heart rates, low blood pressure, purple feet, (my blood pools into my limbs and doesn't go to my brain, pre syncope), low blood volume, throwing up (despite my feeding tubes because I now have Gastroparesis due to my Dysautonomia), dehydration, low potassium (despite my regular Iv fluids), migraines, crazy dilated eyes, spinal pain so severe, brain fog, and so much more... I get shoved out the door. (no matter what shape I am in... Flared up  POTS/Dysautonomia, and virus or bacterial filled.) Even in a typical POTS flare I am shoved out the doors... All they see is a big case or they see nothing but a crazy-stressed person. Because they themselves simply don't have all the puzzle pieces to understand it. (I do my best to explain but there is not enough time to explain in the detail needed.)  Dysautonomia must not be true. (They have never heard of it before we tell them.)  And only crazy people would go to those extreme (just weird) treatment options. (Like taking 10grams or more of sodium daily.) Those treatments don't make logical sense, without a good knowledge of what we know of Dysautonomia. (No, those weird  options you could call "treatments" are the only options we have. I mean I could not have dreamed up POTS on my best day... Let alone it's treatments! I mean no one with POTS could ever have imagined it. It's so complex the brain would have never imaginarily have thought of these symptoms. You would need a good medical degree that is for sure! The patients take a lot of time to learn how Dysautonomia intertwines physically in their own bodies!!) Today I am dealing with a stupid complication on yet another magical journey of something so simple being messed up by a medical professional due to my "must have it different situations"... I am just tired of fighting. All I feel like I do is fight for the regular things in terms of medical care. Things everyone else gets but I just can't because I have Dysautonomia. For some reason that makes what an average Joe would get turn impossible for me... You know I am complicated. I agree. But because it's not normal or simple... I typically always get brushed off to fight on my own. I do a lot of my medical care and I do it on my own. Unforunelty now, I have been pushed far too many times to do the task of my own medical care...and will be in the future pushed to become my own doctor again. No, I can't just change doctors. That's not an option. It is not that simple to even find a doctor who is knowledgeable on this condition. Dysautonomia is a lonely fight in the medical world for many. Dysautonomia matters! It matters a lot if your doctor knows. It matters a lot if the ER doctors, hospital doctors, and specialists know. (It effects about everything in the body we need lots of specialists with understanding.) It shouldn't take an average of 6 years (for me 7 1/2) to be diagnosed...(all while getting worse by the day.) Should I add a simple thirty-ish minutes tilt table test is how we diagnose POTS?! It's not even hard! (You put a patient on a tilt table, strap them down, put a blood pressure cuff on their arm, heart monitor, tilt them, and log the heart rate and blood pressures...) an average of 6 years for that? We shouldn't be deemed crazy before diagnosis. (As most are misdiagnosed with a form of an anxiety disorder and seek treatments before getting properly diagnosed with Dysautonomia.) We shouldn't continue on that rath for the rest of our lives! I shouldn't have to argue my case in front of the "grand court" of medical doctors in Emergency Departments, in my hospital bed, or in a doctor's office...on my worst sick days to deem if I get care or not! (Then if I do it's typically not the right care, they do not know, they won't call someone who does... My Dysautonomia specialist, they won't listen to me... They won't listen to my family with me... Even when they come to ask me what they should be doing...)  I shouldn't spend hours on the phone to get the simplest of things taken care of. I shouldn't have to push so hard for any medical attention! It is not my fault I know more about my Dysautonomia than majority of medical professionals! Can't you see? I just want help? That I have to. I have to know to survive. Because if you don't know what to do... Shouldn't someone? #Educate this is the life of #LivingWithDysautonomia it is a daily #battle for necessary #medicalcare. I don't want to have to be a my own doctor anymore. Dysautonomia severely impacts the quality of life in it's patients. 70million world wide have Dysautonomia why is it being ignored? -Chelle 
Want to help? Go to this link: print out a packet at the bottom and take to your doctors. (Even your local Emergency Department doctors, and hospitals... Nurses and/or EMTS!) They can learn and get resources for education on Dysautonomia. They can help recognize the symptoms in a suffering patient with no answers. They can help a agonizing patient find a diagnosis. They can be aware. They can better treat. They can learn. They can join the fight and turn 6 years into 30minutes. They can tell their doctor friends. They can reduce sufferings. You giving them this information ... Can be the first step to changing many lives.  (I do fight for medical care at a rediculous rate. I do believe it is from lack of education. Dysautonomia patients are constantly going through this. This post is suppose to show the impacts of the lack of knowledge of Dysautonomia and how it effects Dysautonomia patients... But I would like to add I have a group of lovely, talented doctors! One who treats Dysautonomia (very well) and some who have learned of Dysautonomia just for me. I am thankful for my good doctors. But even with their good care, I constantly am finding myself in the battlefield against doctors when I need care.)