Thursday, March 23, 2017

Gastroparesis choices?

Though its snowy and rainy today the past few weeks have been gorgeous! And this girl has been tolerating the heat! )you guys I couldn't even walk from the car into a building without getting heatstroke the past two years due to Dysautonomia! (Praying it lasts and I can enjoy the sunshine again like I used to) here are some of my good days away week 💕 I am so appreciative MY good days! The days I never thought I'd see again in this lifetime!! I am so blessed beyond measure... 
& This silly Dog and I 
Gastroparesis is having a kitchen full of food, feeling starving, & having no appetite at all... All at the same time. I started this hungry thing last night but nothing suffices. So I keep sipping Orgain. I had breakfast but I don't think it's absorbing fast enough. It seems to just be sitting in my stomach. It's always such a strange thing when you are starving but your body doesn't really want anything. Yet it wants food because it's telling you it's hungry. And then you realize your in the middle of a bodily fight.  Either way I loose. If I eat too much and give into the hunger, I will get pretty sick. If I totally ignore it and give into the lack of appetite I loose nutrition... That I clearly need. Hey body? don't you see my efforts today? Nope? These are the days a feeding Tubie isn't so bad... I can have formula and makeup the difference. With what is going on I am going to be talking to my GI. I want to have a Gastric mic-key button on hand. April is 6months of having my current tube. (G&J) At 6months my last tube literally broke and fell out. I had to drop everything and be taken 5hours away to a hospital equipped for me. I was hospitalized because I could not take any meds or eat by mouth then... I also took the whole summer to regain feeds and I got very weak. So the time has come for decisions. I've been thinking on this for a very long time & I think I have made it. Going to see if we can go from a GJ to just a G tube since I still use formula daily into my belly. I keep pushing forwards. I will get there. I've already made major strides. You guys it is truly miracles. I credit Heavenly Father. He told me he would make me better and He sure has stuck by that! He did too say I would not be cured & I am not. But what I am is very grateful!! Just what 7 months ago... I was drinking though my heart via IV fluids/Port daily. My J feeds were so low... And now I eat food by mouth and use a can of formula to supplement (but it goes into my belly) that's so huge! The formula is full nutrition that I struggle to get like veggies and fruits. I can't digest them. So I have to supplement those nutrients. We are moving towards just Orgain as its a replacement. But I am still formula weening.  I think the best option is to move to the G tube because it gets used. The j hardly gets used and I think it's time to take the training wheels off... Plus if I have a G tube on hand I can replace it on my own. J tubes have to be done under surgery as they go into the small intestine. So if this GJ I currently have breaks (the g tube would be a great backup plan that shouldn't push me backwards at all) and the G tube leaves me with a tube and keeps my stoma open if I need to return to a GJ in the future.(stomas close within hours) I think some time with a G tube is a good solid plan. I put the calls into my GI and we will see if He agrees. That was a big deal for me to make that call today. A very big move. Moving forward in faith not fear! I have some anxieties. I also scheduled to see another hand surgeon today (fingers crossed this one is the one. Surgery is so tiny My health conditions not so tiny) I'm excited to keep moving forwards. Prayers, faith, hope, & spunk will get you through -Chelle 

Thursday, March 16, 2017

Thinking spot

I had a rough & tough week. I had big POTS flare up. (I haven't don't this in 6months) but I have been praying for guidance and I took matters into my own hands and changed things up and it worked for me last night. (That sweater is so true #bless this #mess! Especially this week!) 
I finally slept. I woke up a whole different girl. I'm alive again!! (Phew, that was scary I won't lie. But I kept praying, I kept trying) so today.... One of my favorite things to do is enjoy a nice car picnic. (If you don't know what a car picnic is, it's when you eat in your car  in a simple spot.)  My thinking spot is My old stomping grounds. We grew up there. We spent summers there being free and happy as bees! Dirty feet, water, sunshine, fun.  It makes my heart smile. It was simple times and it's a simple place that always brings happiness. You can feel your childhood calling you! So I go eat my lunch there and enjoy the pretty outside. My body can't always do the old things. Sometimes I can't physically take a walk or go outdoors but I can always go back sitting in my car. I can still enjoy the view. I can still go there. I can still sit and ponder. That I am thankful for. I'm thankful for bites of food, iced tea, fresh air, sunshine filled blessings! It's the simple things in life-Chelle                     Oh yes, I gained a good pound and a half! I had my three week weight check and I gained!! So I am not technically underweight today! That's a happy ending dears!💕 

Monday, March 13, 2017

Scuffed boots

The other day sitting in sacrament meeting a new anology hit. (As I stared at the glitter felk upon my desk. Wait why was that there? I was having a good day? Oh my angel knew ahead of time I'd be feeling sickly soon enough. I quickly understood the need for glitter as my body took over the rest of my time there. But I got an answer I needed to know in my heart. Before havoc reached me... "Scuffed boots" it was a clear answer to my prayers. Sometimes when you are chronically ill or disabled, your instinct reaction is to cover it up. No matter what, where, or how I am doing there has always been a part of me inside that wants to erase it. I just want life to be "normal" again. I too want to be like everyone else. I don't think it's abnormal to not want to be ill. I think every sick person wants to be healthy fully. That's the goal. But sometimes it simply isn't attainable for all. Some of us come a little different or complicated. You may need a medical degree to know us. And that's okay. You know why that's okay? Scoffed boots.... I have a pair of cute black boots. I got them for Christmas. I loved these boots... I picked them out. And the very first time I wore these boots... I don't know how but they easily were scuffed. I was so mad! My new boots were permanently scuffed up after a few hours of use. Are you kidding me?! But then I laughed because those boots are just boots. I remembered how much I loved those boots and then I decided to wear those boots proudly. That scuff added character. I embraced the flaw, laughed a little & walked on proudly. Every single time I put My boots on I giggle when I think of the character I wear upon my feet... Those boots are more then boots they are a memory that brings me happiness. Happiness in simplicity. They are a reminder of how a little character is life changing. Those pieces that are hard to understand of me, My medical complexity just adds character. It's not all of me but it's a part of me. Sometimes we just have to except that chronic is a part of who we are. Yes, chronic comes with some baggage of some sort or another. There's a lot to construe. I have a lot of juggling in My everyday routine that takes up time and energy. Those are my attempts to fix the chronic as much as possible. To hide it away is my instinct but Heavenly Father doesn't want me to hide it away. What good would that do? What would I learn from My battles in life if I embrace them fully? If I didn't walk around with an arsenal of medical equipment in my purse... To combat my symptoms that are constantly changing from minute to minute. If I didn't have to think or plan every little thing ahead of time to my body's possible needs. Well I would be "Normal" I would be a lot more predictable! but those things are a part of me. The quirks make me a whole me. They keep me humbled among many things. But being different, has been a gift. Heavenly Father let these struggles in not just to build me. Nope, he knew I wouldn't be satisfied with just existing. He knew me. He knew My need to not just  fight my own battles but the will in my heart to help others in the midst of it all. If I didn't have battles of health I would know very little about life.  Oh no He knew I would find others. I wouldn't be able to take this knowledge and try to lend a helping hand without my character. Whatever that means. He knew I couldn't sit on the sidelines of anyone in the midst of a struggle earthly. That I would have to get up and try to help. And I'm glad I have character. Just like those "scuffed boots" a little character never hurt anything. So embrace your character no matter what it is in your life. When you kinda want to have new shiny boots but life gave you scuffed ones... Wear those scuffed boots with joy in your heart. Smile when you look at them. Don't kick them to to curb or wear the other pair. Wear them with dignity. Walk with your chin up confidently in those scuffed  boots that Heavenly Father gifted You to let life change you for the better -Chelle 

Wednesday, March 1, 2017

It's time again

It's Endometriosis Awarness Month.
I've been through many different treatments. I have gone through 3 surgeries to remove Endometriosis. I also have had the nerve that sends the Singal from uterus to the brain cut. That did not work. My pelvis is injured from the Life with Endometriosis. I have seemed therapy for years. I will have future surgeries for Removal of Endometriosis. I've also had Botox injections twice for hopes of pain relief. (Due to my now known case of Dysautonomia that's not an option.) I see top surgeons in the country who only specialize in pelvic pain. They have been true lifesavers! I suggest finding a pelvic pain specialist! They have a lot more resources and are so much more advanced them a typical gyn. (No joke these people changed my life for the better!)  The only option to "end this" would be to do a hysterectomy. I am 24. A lot of people think getting a hysterectomy is easy. It is not easy. In any circumstance. Especially at 24. I've had Endometriosis for ten years now. I'm not totally sure I believe hysterectomies are really a fix. Sure they help but is that really the best idea of a cure? Millions of females start this painful disease in their teens. I was 14, when my symptoms were unbareable. You can not have a hysterectomy until after a certain age. It's too dangerous. Teens shouldn't live with this mess of pain and symptoms. I don't see that as a treatment. The only other option is hormones. To regulate the bleeding. Women with Endo can bleed for months at a time. These horomones do not always fix that either.                
Today I picked up more "horror mones" aka horomones. To add to the ones I'm already on in hopes of future relief. I tend to do poorly on these and have a lot of side effects. Some unbelievable. I'm always nervous to start or try new ones. I mentioned after my last surgery in July that they found my uterus is enlarged and soft a clear indication it's full of Endometrosis. It's so enlarged it appears the early stages of pregnancy in size. (But it's simply just full of disease) On one note I now understand why ultrasound techs would be so mean to me when they ask the famous pregnancy question during ultrasounds to check for ovarian cysts... I always wondered why they were so harsh and glaring at me like I was lying? I was not lying... And I had these tests in high school and they were so much more calm. (Well that situation now makes sense) However they can't do anything about it... The only way to know for sure is to do a hysterectomy and send my uterus off to the lab. (One day that will be done) it's not dangerous nor does it effect pregnancy. But it does cause me pain.  Endo is no joke. It's painful. It grows on your organs. Yes my organs. Vital organs get covered in disease. It causes debilitating pain. The only way to remove the disease or manage it is to cut it out... In some cases that even means cutting out or removing pieces of organs such as the bowel. It's not just cramps. Learn the more @ -Chelle 

Tuesday, February 28, 2017

We Can Change

I woke up to snow falling. Big beautiful feathery flakes! Me and snow, we have a thing. I literally opened the blinds and it was as if the snow had just started falling for me. The snow felt like a sign from Heaven to keep trying. (It was like a fleck glitter. I needed it.) Things do not happen on our time lines. But that doesn't mean what's meant to be won't happen for us in due time. Somedays, I truly wonder why I blog. Why I ever started this thing! Somedays I think, "I've officially lost my mind." And here I am doing it again! But it's always followed with a spirtuial confirmation that I am doing the right thing. So I continue to post about some times seemingly boring thing. Others I wish those days were seemingly boring for they were rough. My life has changed over the past few months. I've witnessed miracles really. I've come a million miles. I won't give up now. Things are really just starting. So what I had a bad week. Am I going to let a bad week defeat Me? No. I want my goals to be reached today. No, that's not true I wanted them to be reached yesterday! I get frustrated. I know these things about myself. I like to think that everything must happen on a perfect little timeline. Which is funny the past 5 years of my life have definitely not been put on a timeline of "life plans". The past 5 plus years were not in my plans. Are you kidding? I begged. I pleaded. I drug my feet. No!  But it was a part of my plan to grow and strengthen me. And when I realized that... I decided to embrace My life. Heavenly Father does in fact give us more then we can handle. Yes. Because if we could handle it... We wouldn't know how to problem solve. We would not know how to make lemonade  out of lemons. I doubt we would know true compassion for others. How lending a helping hand to another in life is life changing. How could we feel if we have not felt hardships? How would we know the good was so good? We would all be comfortable in our little comfort zones. And that my friends, that won't get us anywhere. So I'm going to keep moving out of my comfort zone. Because I have So much more to do, see, & experience. Life will constantly and consistently throw you curve balls. I prefer to dodge them. I don't like things thrown at me. Literally. My hand eye coordination is hilarious. I'm the same way with the metaphor. Satan wants us to doubt ourselves. He wants us to feel like we have failed. He wants to interrupt our Eternal plans. That's how he drives a wedge inbetween our paths to Heavenly Father... In hopes he will win and we will quit having faith in the goodness of life. If He can get us to quit  and give up on our plan eternal he has been victorious. We will quit turning to our Father in Heaven, piece by piece. He is a sneaky little devil! But sometimes you just have to be brave and keep trying, moving forwards. I know Somedays my head just spins but those are the moments we have to be the strongest. We have to put our feelings of doubt aside and just rely on plain old faith.  We don't know what's ahead but let's go forward in faith in Heavenly Father's plans for us, thinking it is a wonderful life. Because it is... Put your umbrella down and dance in the rain. Let's not block the blessings from falling upon us. Especially over worries that someone else might not think we are "good enough" or any thing else. We are! 
"Now it's time to finally spread your wings and soar to higher things you know the limit is the sky As you go if you sometimes fail when your spirit's frail remember you were meant to fly"
You can change. Don't give up ever on your goals! 
Chins up Dears-Chelle 

Sunday, February 26, 2017

Thoughts in My Brain from Yesterday

Before church my tummy was so angry. But I preserved  and church was great! I now am drinking some Gatorade to replenish. (I have seen many POTSies suggest using the Gatorade powder and add extra powder so you get more electrolytes) I tried it out and I have to say it is Wayy too much sugar! And I think I will stick to my unflavored pedialyte and juice. I personally don't recommended this Gatorade powder trick. I'm so fatigued. I do drink Gatorade and Powerade on occasion but I tend to always stick to my pedialyte. I did sleep last night (Saturday)  & when I woke up.. I was very disappointed to find an angry body. It was well rested, but the physical stress must be too much and has caught up. I'm tired but I'm happy. I feel so blessed to partake the sacrament no matter how nauseated. That was such a frustration for me, not being able literally physically to even go to an hour of church. It was hard and I felt guilty a lot of Sundays. But as I prayed Heavenly Father told me he understood My efforts. That it was okay & he knew I'd try to muster up some sort of Studies, and mostly conference talks on Sunday's. My efforts were not unnoticed. I don't think anyone ever thinks that one day Church could literally not be an option. Due to physical impairments... But it does happen. I can say General Conference gained a much bigger love during that time!  I feel blessed for the little but big simplicities in my life. Like attending Church. I had a trying week but a good week.
I restarted physical therapy, I had a VW picnic, I got some sunshine. I seem human again. My progress can be slower then I'd like at times but I just have to rely on My faith. Then that means I must work on My patience. Keep smiling, Life is good-Chelle                                                  (I would like to add a side note: sometimes I see some very disappointing posts on Social Media. Poking fun at people's weaknesses. I know memes are funny. I've spent many nights with insomnia reading them and giggling. But there is a line to be crossed. There is a difference between taking a photo off a movie or a clip, using a cat, and using a real person's real life post... as the tail end of a joke. Yesterday, there was a viral photo with a severe skinny malnourished teen. It poked fun at her anorexia. It called her "stupid". Anorexia is a disease. That's not funny nor okay. Her struggles to eat are not a joke. How do You think she is feeling after the photo she posted went viral as a joke on her illness? (Wether she is taking action of care or not. She is clearly struggling.) For all any of us know... it's not anorexia it could be a different disease. One she has no control over at all. I was called anorexic by many medical professionals. Meanwhile I was slowly and rapidly starving to death. I had a paralyzed stomach. No matter how hard I tried the docs wouldn't interviene. Thankfully Heavenly Father guided Me when I wasn't sure if I was really overreacting, or if My specialist was brushing me off. So after not eating for 3months. I went into my appointment and demanded blood work be done to put my worried mind at ease. (She claimed I was fine.) Heavenly Father warned me the night before in prayer to work fast. So I got upset and I remember begging for these labs. She refused. And I left in tears and promised I would never return. (I still have not returned) my PCP the next day started tube feeding me via IV. I was severely malnourished. I did almost die of starvation. So when I can see a physically ill sick person. Who is starving. To the point I can see death is too close for any comfort. It is not funny!! Starvation is truly miserable. It effects everything in you. I remember it felt like my brain wasn't even working. It was physically & mentally draining to put it lightly. It hurt severely in ways you couldn't understand unless you have been there too! And a lot of my Gastroparesis friends can look anorexic at times. What people don't see is under the clothes lays a feeding tube and/or an central IV line. But most importantly a very wonderful person who is struggling to not starve to death. And sometimes they do starve to death.... Many diseases cause weight loss and malnutrition. Anorexia and bulimia do too. They can result in death. So You think that young girl clearly struggling with body image is going to take this viral attack at her body well? (Assuming that's what's even wrong) Dont poke fun at illness in any form. Our laughter should not come from dragging another human being through the mud. We should not tear down to build ourselves up. That's bullying. Love one another. You don't know what you can't see on the outside. You don't know what battles people are fighting on the inside.. What if that was your Social Media post? Or your family members? Would it still be funny or hurtful? Let's just be kind to one another. I am going to work on this too. Kindness is contagious. I also believe being mean is contagious as well. Even unintentionally. Satan wants us to sin. So it's easy to laugh.  But be the light of this earth and the example to treat all with respect, love, and kindness. Online as well. It's easy to hide behind computers... If You saw this girl in real life would you go up to her and tell her she was stupid? Probably not... Treat people the same online as you would in person. I know if we all do these things our hearts will soon be filled with happiness and love. Thanks! Your Friend-Chelle 

Saturday, February 25, 2017

The end to a under slept, under kept week!

I've slept for the first time in a few days! 🙌 I really needed that nap. Dysautonomia is no joke! I do not like it when I quit sleeping. It's torture. Literally they used to make war prison camp victims stand and not sleep for torture. (Yeah, a little fact I picked up from being sick from a doctor 😂) I learn all kinds of things just being Michelle!
I did get to restart physical therapy this week and I am ready to heal! The phone saga continues... Still working on getting through to my doc. But she called me today but I was asleep! (It's Saturday. But what an awesome doc to call in Saturday!) She has not received a word of any of my messages. Her office even told me she took care of it... I was skeptical. Because nothing had been done... It clearly was not taken care of. So I got office blocked again. She will call me Monday. And I will be letting her know I did not forget and did MY part... And the things her office have told me over the past few weeks that clearly were not true at all... I've been calling for two weeks! Being chronic is relentless. I'm going to rant for a minute. If you work In a medical office. Some patients believe it or not... Know what they are talking about and doing! We exist. I know not all patients are like me. Some are foolish... But we who hold knowledge do exist.  My doctor really did tell me to find the name of a medication I previously was on, call her office, leave the message, & she would call me back to talk. She really did say She was going to call me... I did not make that up? We had a plan... But bottom line  I was blocked. Because my messages were not relayed to my doctor properly. But I was told My Doctor had taken care of everything. So therefore there was nothing I could do... Luckily my doc will be contacting me again it sounds like and we can straighten it all out. I am getting tired of phone sagas. If you live chronic don't give up. Because sadly this happens often and the doctors are not even involved but you think they are because that's what you are told in the phone.... So don't give up call them until they get so annoyed they put you through (if you have to) don't be afraid to stand up for yourself!                        On a different note, I am slowly continually loosing weight. I hit underweight this past week. It's official. However we don't know what this means. I am eating. I am eating well. So we are calorie counting. Ah! 😩 calorie counting hurts my soul. I start looking at all the foods and I start counting the calories. Before you know it you can't eat a chip without counting the calorie contents... But I am intaking more calories then we suspected so... I'm winning 💪 My doctor thinks I may be actually burning more calories then normal...  We are running out of conclusions. So this should be fun to figure out... Dysautonomia is dysaregulation of autonomic bodily functions. I have tachycardia among many other things often. If I truly am burning more calories to maintain my weight... My gut tells me it's going to be interesting to find the bottom line of where and what is the target.  Wish me eating luck, and pray for sleep! Crazy hard week is almost over -Chelle