Wednesday, December 28, 2016
I have started many posts over the past few weeks. They haven't been finished. They have not been published. Partly because I'm busy rebuilding my life again. Partly because I'm living, soaking up the good. Partly because I'm nervous. Pary because I don't know what to exactly say, I start writing and end up on a totally unrelated topic... Partly because I don't want to jinx it, Partly because of guilt that I am feeling so much better while many of my friends endure these hardships. But I know God has a plan for me. I've been taking "Michelle time" but My friends are not forgotten. I carry you all with me in my heart. I think of you often during the days. I talk to many of you still. I love my friends who know what chronic and disabled feel like. I'm not going anywhere. I am still here, just not so many posts. Please, never hesitate to message me or contact me! If you are a complete stranger I don't care if you think I can help, offer advice or be a friend to leans a listening ear... I am here! Please do! I talk to people all the time... Mostly strangers through this blog. That's what I want is to help people. I'm any way I can offer it. So please don't be shy. I've had strangers offer me help years ago... Messages are still checked regularly and will be!! Today One of My few favorite doctors turned a rough time into a bittersweet time. I am going through treatments. Sometimes treatments make you worse before they help. With that comes tunnel vision of pain. But with that I have been able to cling to reading scriptures. I have been even closer to My Heavenly Father. I've been listening more openly. But I am stubborn. I am not patient. I want to fix things on my time. And I always have been that way. It's been a blessing for me truly. I've done so many things other patients never do. I've taken initiative of my care & have a sassy attitude of get on board or I'm going to find someone else to help me. (And I did) But life has been oh so good to me these past few months! I know it's Gods healing. Not one single treatment has changed. Something literally clicked for me. My doctors are thrilled yet scratching their heads. (Well I am pretty complex so that confusion is nothing new... But good confusion is a nice change. of venue!) this blog will remain up. I started this blog with a strong prompting years ago. I didn't even know what to blog about in the beginning. I just write what's in my heart or on my mind. I feel prompted, I post. I try to educate. I have tried to share my story to help the thousands of others find help. To know they are not crazy just because a doctor thinks so. My crazy condition does exist. And that there is hope. We all have a plan eternal. Tonight my heart feels like sharing a moment...
Tuesday, November 29, 2016
Sunday, November 20, 2016
"I'm gonna walk 100 miles, I'm gonna whistle all the while if that's what it takes to make me smile. I'm gonna walk 100 miles. I'm gonna run right up this hill summer skies or winter chills. If I gotta take a break I will. But I'm gonna run right up this hill. I wanna hold the whole wide world right here in my open hands. Maybe I'm just a little girl. A little girl wth great big plans!" -Mindy Gledhill (I have a goal of 100 miles in 100 days. I run most of them but I get them in daily! It's POTS treatment protocol to do cardio) Today was a chronic day. The weather makes me tired and achy. I did not want to do my mile. (Even walking one just was not my cup of tea today.) when I woke up this morning, I woke up a bit early. So I took to Facebook to find out yet another Gastroparesis warrior had been taken today. It always hurts to loose another fighter. It makes me reflect on my life. Though, I am so thoroughly blessed and have had major life changing healing... It makes me realize even more how many really do not get this chance. They loose the battle. My battle. So though I felt tired I did my mile because I am ABLE to! Today, I am able to eat by mouth and workout. I was able to take the sacrament and attend church. Tonight, I did my mile for all of those who can't. This one is for you guys!! Fly High 💚 I am SO very blessed and My life is full of love and cheerleaders. Thanks to all my cheer leaders because it's so touching to see how loved I truly am. Thank you all and lots of love always- Chelle
Wednesday, November 9, 2016
So many emotions in one little world... I haven't said anything. But I feel compelled to. Yesterday (Election Day), one of our amazing, brave, & sweethearted officers was shot in the line of duty. I did not have the honor of knowing from the only things I hear... One spectacular person. A true big heart. Thank You for protecting Me officer Reed! 💙 So I ask that you keep his sweet family in your prayers & of course our SLPD. (as well as all effected) It's heartbreaking to me. All this election stuff matters, it does. But in my hometown what mattered yesterday was what happened. Another innocent life lost. Another police life lost. Our protectors. And a long 24 hours on edge for a community. The person of guilt had to be put down. There was no choice. They tried. Thank you to our protectors. Pray for the family of the killer too. Because I am sure they are struggling too! But I am proud of my little town we put aside all our differences yesterday and today. We stopped to think of our own families. We all focused on what was really mattering. In Show Low AZ you won't find us arguing, or crying over the president. You will find us lifting one another up. Like Americans. I am proud of our community. I am proud of our police officers. Thank you for all that you do! Please keep this family in your prayers during the next while. Hug your kids, your husbands, wifes, parents, Ect. Hug them extra hard! Sending my condolences and Love, -Chelle
Sunday, November 6, 2016
I am SO blessed. I have been having some seriously fun amazing times! (This is my post shooting "look"... (I had so much fun with my Brother and Sister shooting today after church.) another moment of gratitude hits my full heart!
Thursday, October 27, 2016
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 💪. 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
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, http://youtu.be/xyX-I-um5Kk)
Wednesday, October 19, 2016
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
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...
Tuesday, October 18, 2016
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.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) 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. 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
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
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.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)
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.
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 baptizeto bring joy to the people of the world!https://www.lds.org/general-conference/2016/10/joy-and-spiritual-survival?lang=eng
(If you want to listen to that talk by , here is the link.)
Wednesday, October 5, 2016
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.,
..it 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 http://m.europace.oxfordjournals.org/content/early/2016/10/04/europace.euw154.full?ijkey=yNgpIRCkIFYHg6X&keytype=ref
Tuesday, October 4, 2016
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: http://www.dysautonomiainternational.org/page.php?ID=95 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.)
Thursday, September 29, 2016
Tuesday, September 27, 2016
I think I will write about the hot topic of this very fall day...I have something to say. I have never in my life seen so many thoughtless, childish tactics (specifically on social media, coming from adults) over a presidential debate. It shocks me to see so many nasty posts over and over again. Now I realize we all have our own opinions. I'm not trying to change anyone's opinion. (This is my first and only post over the presidential race.) I simply am pointing out our actions. Why be nasty over social media? Why tear down one another? Does it really solve anything? Does is really change anyone else's opinions? Besides probably what they think of You... Or is it simply just sinking too low? What kind of world are we living in where our actions, even bad don't have any consequences? Have we lost all morale visibility as a country? Our country is diverse. We all are going to have differences of opinions. But since when does everyone HAVE to agree on everything? And if they don't agree, they are either offending someone or stupid? We are all entitled to our own opinions. You might remember the phrase, "common curtesy." One phrase I knew while growing up. It meant being kind to everyone. No matter what, holding respect for another wether we agreed or not. Now days that word keeps coming up in my life as a question, instead. Simply phrased as, "where is the common curtesy to one person to another these days?" In day to day life... I know our presidential election coming up is very important to our country for various reasons. But the second we loose respect for another individual and choose to make fun, ridicule, and attempt to tarnish. We in fact are not sending the message of Christ like love. What are our actions saying? Are they showing a trend we would want our kids, our future kids, or the youth now to see in us? Would Heavenly Father approve of these actions? Are we even thinking in the moment? Are we setting an example? Or did we too fall into the vortexes of the evils of our world? Did we fall to where we don't recognize that right is still a right and wrong is still a wrong. Everyone can have their own opinions on things. That's perfectly fine. We can express our opinions openly. (And we should) But what is not fine is disrespecting others. Or choosing a wrong action while striving to make another agree with you. I think Sister Bonnie L. Oscarson said it right this weekend during General Women's Meeting. Quote, " Certainly Sisters we need to use sensitivity but let's also use our common sense, and our understanding of the plan of Salvation to be bold and straight forward when it comes to teaching our children and youth thee essential gospel principals they must have to navigate the world in which they live. If we don't teach our children and youth the true doctrine and teach it clearly, the world will teach them Satan's lies." I think we all need to take a moment to think of our actions. Especially during a political race. I think we all tend to forget that actions speak louder than words. Another thing I think we the adults are forgetting is that copying others simply because your friends are doing it too... Does not make it a righteous action. I think what our country needs the most is more love. Less hatred. Keeping of respect for not only ourselves but for others. (Even when we don't agree. It is okay to disagree, respectfully.) I think we can all post or voice our personal opinions with keeping love in our hearts. And the old phrase, "If you don't have something nice to say about someone don't say it at all." Let's not forget who and what We are. Because I know each and everyone of us are too precious to loose who we are supposed to become. Just a thought for the day. Love always-Chelle The quote I was referring to above. This link is down below.. If you want to view it... https://www.lds.org/general-conference?cid=HP_SA_24-9-2016_dPFD_fLHNA_xLIDyL1-C_&lang=eng
Monday, September 26, 2016
Sleep is pretty crucial with Dysautonomia. It gives our nervous systems a chance to "reset" while sleeping!! I am also not tolerating my feeds today. Which is not helping my sleepless, worn out body. I did just get some juice in. My blood sugar must have been a bit low because I perked right up about 30 minutes later. (I used to struggle with fluids worse than solids... It's so strange how my body just flipped into letting me have some fluids by mouth. That is such a huge deal!! ) And I have some speciality foods by mouth. But my Gastroparesis is still very present. I do need formula and I have been struggling to get formula in. (Hoping my tube change next month will help that oddness.) You can tell. I've lost a tiny bit of weight. And I dip but I am trying!! Eating by mouth is fun and hard at times. I can not eat foods That I ate before tubes. So there are moments of getting used to new foods. Moments of trying to find nutrient enriched foods. Moments of craving crazy foods that previously I used to eat, like enchiladas? Um no! I would kill over for a week if I did that. Yet I have been craving those for two weeks now. Foods I haven't eaten in years!. And a lot of trial and error with food experiments going on right now. But I still have to take my nausea meds several times a day. And I made the mistake of eating an regular yogurt. I should have eaten a non fat yogurt. Well I definetly paid the price... See Gastroparesis, where fats and fibers technically are your enemy. They don't make us sick like an allergy. They slowly digest. When your tummy is broke and can't process foods... If you put something in there that takes a lot of mushing (p.s. Tummy is paralyzed it's not gonna mush. However it will spasm like a maniac.) and slows things even more. You will in fact be in pain and vomit. It's the law of Gastroparesis. (Wink). I have blood work to be done today. Blood work seems to always come on an already difficult day. In POTS we have low blood volume. So taking blood out of this body is not the funest of tasks. I got a little extra sodium and water in me to help the process! But every two weeks because of POTS I go and get my electrolytes checked. I am on electrolyte replacements. So we have to keep an eye out for low potassium and Magnesium. We watch sodium, another electrolyte but it doesn't test low when low by blood. But since I replace such an abundace of sodium (24Grams) per day we want to keep an eye on it to make sure it is not too high. The first thing I did today was pray. I'm positive it's how I am functioning at all. Some days are entirely battles like today. A broken body is a broken body. I am simply thankful for my blessing in this life and the comfort of understanding the bigger picture of eternity. I might not understand it all in today's time but I truly believe all things happen for a reason. We are here to learn and grow. That's the task is to learn and grow while keeping hope for a better future. And to just keep trying. No matter how blind you feel to your future! Had to share my positives. No matter how little they may seem my little strides are big strides! 😊 -Chelle
Wednesday, September 21, 2016
Well I survived another down and back trip to the pheonix and back, all in a day's work. I am so fully fatigued. Today was a long day of pain and travels. My doctor prescribed some pain meds for my pelvis and we will continue to wait on physical therapy. (Will start in November) Then we can start working on recovery. Until then it's keeping my pain at bay while my pain is out of control... There is not time frame for how long this. Journey will take its literally one day at a time. Now if I could just find a pharmacy who has my meds in liquid form. Being a Tubie is thoroughly complicated! Next month we will be replacing my GJ (feeding) Tubie to a button. Yay! I have some nice granulation (scar) tissue from my terrible tube I have in me now... The bumper is horrid and is not staying in place. But my buttons do not even need a bumper. I am really excited to get my button back! I am so tired but thought I'd give an update. We are simply practicing our patience and praying for the best healing-Chelle
Friday, September 16, 2016
My Gastroparesis and POTS flared up! I did get some sleep last night. (Yay!) Heart rate is high and Tummy is so very angry at me! Whoops. Tummy is bloated. We are currently on a formula and all liquid diet. We are letting GI tract rest a bit. I feel lucky I can still sip my ginerale!! But on the bright side, my eyes are so much brighter today!! We will take any and all victories!! I had a rough night with my symptoms and in return am a bit dehydrated and hungry today. Hanging with my bestie -Chelle
Thursday, September 15, 2016
Monday, September 12, 2016
Wrapped up and ready to go...https://m.youtube.com/watch?feature=share&v=gPHnadJ-0hE Xo-Chelle
Tuesday, September 6, 2016
No...Which means another thing.... My brain is like "um? Hello? Don't you know you are not okay!?" And I am okay! Yes I am in a lot of pain and stuck in bed or on the couch. I am so incredibly fatigued. But my body really thinks it's not okay (a normal body reaction... It's in pain, it's sick, so therefore it's going to signal to me that I am not okay.) and though I know I am okay...basically at this point all I can do is let my body do its thing. Basically I'm sitting here and letting my body fight itself. (It's like waiting out a toddler's temper tantrum... You can hear it. You know it's there. But you know it will be okay. So you sit there and let it pass) I'm just sitting here watching my body go through its own tempure tantrum... It's upsetting to be this way. I've been stressed out that I have been down. But as I have been trying to do everything I can to "make it better"... I came to the conclusion that all I can do is simply the best I can do. I am taking my meds. And laying around the house. Do I want to be? No? It feels like a waste of so many things!! But it's truly the best I can do for my body and if it wants to throw a fit I have to choose to just let it. I have to just wait it out and hope for a better time. Let it pass... I can think of a million things I "should be doing" off the top of my head. I've been letting that eat at me all week. But is that really going to make my body stop and feel better? No. There is a lot of things I "should" be doing but I simply can't right now and that has to be good enough for today. Nothing makes me more mad and frustrated then, being chronically ill. But I don't have a choice! So, I can get upset and emotional or I can take a deep breath and let it go. You can only do the best you can! Beating yourself up for things you can't control because they aren't the way they "should" be. Will get you no where! -Chelle
Monday, September 5, 2016
I was really excited when I woke up feeling well and with energy. (Not totally drained) I know I have been posting about my wonderful positivities lately (and they are amazing huge blessings!! I am eternally grateful) but I am still sick. I am really dealing with pelvic dysfunction and it's not easy... Especially post surgery. I won't be able to start physical therapy until November. It's backed up that far... And keep in mind I will have to travel once a week three hours away from home and back three hours... That's not easy on a POTSie body and I don't have a choice. But today my pain hit hard again. It's just like flash backs and panic... I know I will be okay, it's going to take time. My specialist said surgery would make it worse. She wasn't surprised at all. It's just I'm sick of getting worse to get better. I think a little panic sets in as I am remembering how much I did go through and how I have to re walk that path. (Hopefully I heal faster and netter now.) that's been rough. I've had chronic migraines. I have been POTSie for the last two weeks. And when the weather started shifting from summer to more fall like... My body decided to freak out over it...( I do this every year)... I am reaching feed goals. Which is exciting but it's a full fight daily. But I keep reminding myself I will get through and we can do hard things! But it's rough with the nausea. The the nausea meds seem to just add to the fatigue. So yes I have made improvements with my feeds and no IVS ... I am so so happy but I'm still sick and fighting for quality of life and to be able to get up out of bed. I hope when I am cleared to have more excercise that in itself will help my POTS. And when the weather finally makes the full change my body will calm too. I just have to keep having hope and faith that things won't be perfect but they can improve. Studies are being conducted and hopefully better treatments will come because Dysautonomia is truly awful. It takes perfectly high functioning people who are young and throws them into a whirlwind of sick, being stuck in bed, it's stealing and wrecking our life's...also if I don't have my hair and makeup done, I am not having a good day. Despite my smiles and positivity. I am physically not well...a lot get confused but I promise no makeup is equal to not a good day for me... I do believe God has a plan. I do believe we are rewarded for our hard times in the next life and in this life as we grow, learn, and gain eternal perspectives! Keep fighting just keep going!! Okay? I will be along side you xo-Chelle P.S. Wrecker was so much better and I was so relieved!! But then two nights ago he got his eye scratched and bleeding... Poor little guy we have him on antibiotics and some sort of spray! He is improving!! ( all we can assume is something stuck/ stung him in the eye, poor puppy... Because since he Yelped in the yard, outside that one night a few nights ago...he has been afraid of the yard since. We are working with him and he is loosing that fear. So taking care of my pup. I hate this so much!! But he is looking better and acting better today for sure) poor bestie 💙 lots of puppy love for the Wrecker dog!! No he is not sick, just something with his eye. He eats, drinks, and barks and plays. The animals in this family the past little bit🚫more of these shenanigans!! All our animals in our immediate family have gotten sick (none related, it's truly strange) #dogupdates
Thursday, September 1, 2016
Working on getting my sodium lined out today. (Will be glad to have that situated) well, I hope it gets lined out today I am about out of my sodium... That's not going to go over well.... Pray I don't run out! I am still fighting feeds but getting there! But my poor pup is not feeling well! Oh Wrecker Dog 😕 I don't know what is up with him... I can tell his face hurts because I can't pet that one side and he shakes if I do. I decided to monitor him and see. He has been eating and drinking. He is also alert. But he is so sleepy and just you can tell he hurts. I have him the right dose of baby aspirin. Poor little thing!! I am not liking my pup being in pain! (I honestly don't think he is sick I think something is hurting him.) we are both laying on the couch this rain has got me supine.
Wednesday, August 31, 2016
Today is one week no IVS... NO NEEDLE IN MY CHEST 🙏 !!!
"It's not about your scars, it's all about your heart"-Mindy Gledhill. Only using my feeding tube for both hydration and feeding!! Whoop whoop! Seriously though it's surreal and very convient! I don't know how to feel besides extremely grateful. I feel so blessed. I also feel nervous. I at some point obviously had a switch of some sort, neurologically. This led to better GI motility to allow my j feeds to become higher. I'm not sure I've ever really moved "forward" with Dysautonomia. It's really just been a battle of one foot forward ten backwards. This day also is the end of the month I became ill 9 years ago. In a year I will have conquered a full decade of living chronically ill. Due to my chronic illnesses life has definetly not gone MY way. MY plans did not get "made" things changed in the blink of an eye, yet slowly overtime. I thought I would always be better next year. Then I fell on my face so hard I could never fully get back up. I fought daily to survive life. But I tell you I am blessed!! I have a lot of knowledge about my life. I feel I know the true importances to seek. I know I have witnessed special blessings to myself on some of my worst horrid days! I have felt so sick I have had many days I thought death would be taking me. I have crumbled to the core. I have lost full control of my life such as work, socializing, living. It soon became replaced with doctors, treatments, and struggling to get by day to day. I will always keep trying and hoping for better quality of life. I know because of mine afflictions, that I have become stronger. I have recieved so many blessings i would have never of been able to have been obtained on any other path. Being so Chronically ill, has changed everything in my life but I can honestly say... though times have been hard, lots of hard, it will always be replaced with something bigger and better! (Maybe not in this life, but the next.) and sometimes blessings the size of an elephant are with us in the moment but our afflictions are too much to bear. We are in the midst of fighting and clinging to our faith. We are wondering why God would let this happen to us? We are in pain. (I know I saw many blessing during the aftermath of a hard time) Well, he is molding you. He is changing your life forever. Even if a miracle happens you forever are changed. What? Maybe, you don't want to hear that... But maybe, just maybe it's one of life's greatest gifts. A view upon a mountain top is one of the most beautiful views. Go climb it! Find your perspective that fits your diversity in your life ! I've shared this song, beautiful Heartbreak by, Hilary Weeks....many of times, I've listened to it more times than you could count. This song has always resonated with me. Always spoke to my soul...this song was in my head during hospital stays, procedures, beating my head into the wall needing help and not receiving it, tests, doctors office visits, travels, what felt like wasted time... Sure. I've been crushed, mangled, pushed to all my limits!
(I hope LDS women go check them out!! They are amazing!! Link:https://www.facebook.com/LDSWomen/ do not mind me borrowing this picture to share, I just simply love it!! it's why I blog. If I have nothing to offer the world what's the point in having all this knowledge? Guess I better share it!. I must be a tool in the bigger picture. That is why I blog!)
Monday, August 29, 2016
Friday, August 26, 2016
https://www.dignityhealth.org/stjosephs/services/womens-health/pelvic-pain-and-gynecologic-surgery ) I am picky when it comes to doctors.... These doctors helped me. They are specialists of a specialty. The only thing they do is Pelvic pain! (And obviously the conditions that come with that) And they have so much to offer with compassion!! Your pain and care matters. Something I was not finding anywhere else. If you suffer from Endometriosis, living in pain is not necessary. I highly suggest them on any day! Be willing to fight for yourself!-Chelle