Thursday, December 31, 2015

The end of a year

Mom is healing and recovering nicely. I was incredibly sick yesterday but a magnesium infused iv and some compazine made me better for today. Sitting with my best friend, angel, and mom now. Happy new year may you find strength in your trials and triumphs and pure peace with your blessings love, Chelle 

Tuesday, December 29, 2015

Mama

I haven't posted in a very long time. I went on a vacation and virtually quit because Apparently I never came back. (Aw man wish it was a real vacation not an anology) My faith and love for God however did not leave my side. I just simply felt like a copy machine making copies over and over of the same stuff I'd already written. But mostly I didn't feel inspired by the lord as I did in the begging. I have felt I needed to take time and ponder life and find inspiration. I guess I haven't been on vacation. I signed up for a treasure hunt!  I found that inspiration today. My Mother. She has a big surgery today to remove part of her colon.  It's been an awful day
After being  hospitalized for the week of thanksgiving (a new family tradition we are not fond of and are stopping) My mom is doing the normal things but it breaks my heart because those normal things hurt so bad she is so sick. My heart dropped to the floor seeing my rock be so bad off. All day Martina McBride "I'm gonna love you through it" has been playing in my head. I will love my momma through her pain as age always does mine so gracefully and God will love is both as always through it. Please pray for my mama, I love her so much and we need all the reinforcement we can get. So whatever it you are going through please know God loves you very much and he will "love ya through it!" God gives us trials to strengthen is this I know. Love, Chelle 

Monday, November 2, 2015

My Rock

Gods love for us is divine and individual. He knows when we need his comfort. All we have to do is ask and pay attention. Tonight I asked for him to give me a sign that he is there and I am okay. (Which I am) but you know when you are a kid and you need the monsters on the closet checked out before going to sleep... Well I just needed my loving Heavenly Father to comfort me and chase my monsters out of my closet before bed tonight. I just needed that trusting care and love that makes you know you are okay at the end of the day...this song http://youtu.be/oJVv5kjOJhU as playing and I suddenly felt the need to listen to the lyrics. I think the message is clear. Heavenly Father is my rock. The one thing I can count on no matter what. What a comfort that is. I love him so much!!-Chelle 

Monday, October 19, 2015

cold intolerance

It is finally cold where I live now. I am dealing with once again not being able to regulate my tempature. Now it's shivering to death for hours at a time. I have been sick today. But I am learning wearing a beanie when shivering and it just isn't getting better tends to really help me! Well wishes!-Chelle 

Saturday, October 17, 2015

fill in


Yes I had a good day this week! Go me!! I drove my beloved Herbie, left the house, put makeup on, did my hair, and went to the store (gasp) it's such a pain being so weak and I'll. the tasks that seem so simple are far from to my body.... But I am learning to have a much higher appreciation for simplicity! 
On anther update concerning the past week, I am having a problem. I can't quit eating by mouth I am starving. I can throw up and literally just think about eating. I vent out what I eat by mouth mostly through my g tube in my tummy that's the big tube connected to the ziplock (yes it's gross) then I feed through the other tube my formula ... That's called the j tube. I am sick of feeling like I am starving and no matter how sick, the price I pay for eating, my fake but very real starvation is out of control. That's what is going on much love to you! xo-Chelle

Saturday, October 10, 2015

Back at it

I am happily back home currently feeding through my working j tube. Yay! The endoscopy went good. I had scary low blood sugar levels when I arrived to the hospy. Luckily I have my glucose meter to test my blood sugar levels. I ended up on the hospy floor ew gross! This geemaphobe did not even care. They ended up pushing glucose through my Iv we didn't use my port.                             I am feeling better slowly but oh so worn out! My brain as weird as this sounds feels stronger today. I plan on more resting today. Oh and looking through the internet staring at pediatric wheel chairs. I can walk and all. But when I am out for a long time I get sick from my postural Orthostatic tachy syndrome a.k.a POTS. So instead of locking myself up in my bed I am looking at this as a tool to help me get out and about like I used to do. Now will I use this daily or everytime I leave my house? No way, I have two good legs that u will use I just need help when they get floppy lol ... It's stressful trying to find a wheel chair and what you want I. One. Wish me luck because I am back at it again! Not giving up on this #dysautonomia fight! This photo was right after surgery a little puffy swollen.-Chelle

Tuesday, October 6, 2015

September

September has just been survival mode for me. My j feeding tube recoiled back into my stomach within days of fixing and it's been a fight to say the least to get help. I will be getting a new feeding tube Thursday. I have lost 15lbs this past month and I feel like crap. I am a fighter. This my Heavenly Father had made clear to me this month. Sometimes I wonder if I got myself in over my head in the pre existing... Oh but what glorious blessings lay ahead one day. Conference was a joy as usual and a great comfort to me. October is Dysautonomia awareness month. Go turquoise!!! For all the fighters who fight alongside me, we got this to learn more about Dysautonomia and how you can help: http://www.fundcourage.org/

Thursday, September 17, 2015

Times Get Tough


I have been pretty ill. My feeding tube, the j one... was coiled inside my stomach and my feeds were backing up into the stomach. Leaving me very ill and it got to where I was getting no nutrition. I was hospitalized this past weekend for my gastroparesis flare (to try managing the beast) I also had an endoscopy to check my tummy out and fix the tube. I will have another x Ray in a few days. If any signs of movement, I will be getting a new tube. My blood sugar dangerous dropped the first morning I was in the hospital. (I was so blessed to be there in good care, with an on top of it all nurse... so we caught the scary low blood sugar. I can't imagine what could have happened if I was at home) It is clear to me how our life's at times seem well unsatisfactory. Like those "hello God can you hear me?". He can. He picks up the pieces along each broken road.I am still recovering at home. My feeds are pretty low and it's going to take time to get back on my feet. I can honestly say I know what it feels like to starve. Something I never thought could happen to someone like me. I have cried many tears over it this past year. It's not for the faint of heart. The hard part is all the foods right in front of my fingertips. So I know all the different ways we see to donate food. Put a can of food here, donate food there ... especially around the holidays. But please do. Somebody,somewhere really is hungry and needs that food. If you are that somebody somewhere, I am praying for you! I know I will be doing my part from now on. I have been through so much this past month and I can say quitting is mostly what I have wanted to do...But I am not done writing my story yet. It's turning fall here, my favorite time of year! Yours truly-Chelle.

Wednesday, September 9, 2015

Not doing well

Not doing well I could use as many prayers as possible. My gastroparesis I think is what's wrong but I have been sick two weeks today and getting worse and no nutrition.-Chelle

Friday, August 28, 2015

gastroparesis

Yesterday I woke up in a gastroparesis flare. It was a long painful sick day...  Lots of yucky yellow bile (bags full I vented our my gastric tube) I ended my night on the kitchen floor wrenching to no end trying to get my medicine crushed and in my intestine.
No eating and what I eat has to be vented out my g tube (so no nutritional value by mouth) plus I only tolerated 20ml of pedialyte only through my j...minimal calories) I ate a donut tonight though and it stayed yay! Now I am sure you're thinking, "a donut really?" Hey it was yummy and some calories. I typically eat nothing in these situations but random junk foods my body craves. I didn't always. It used to be soup and crackers.(crackers I still eat. Soups I have thrown up too much... I hate soup right now and jello) taking it I strides. I still decided that I could go on my walk, and I almost didn't make it back without passing out. I kept telling myself "you will not stop. you will not pass out. Oh please don't pass out!" My mom dragged me home and straight to the chair. I felt awful so we ran salt and pedialyte through j tube until I mustered the strength to access my port for Iv fluids. Now I am freezing snuggled up in my blanket so tired (Iv makes me so cold)-Chelle 

Wednesday, August 26, 2015

Happy National Dog Day

Happy National Dog Day Mr. wrecker! I love you more than words explain. You take care of me when I'll (in all your doggie ways, you are always with me in any mood...boring, sad, frustrated,or mad. You, my dog are my best friend and an amazing comforter when I am sick. May you find joy in your little doggie life your pal-Chelle.    
Today is rest day for me nutrition and fluids. I am coming down off a medicine that was for anxiety (I was misdiagnosed with Panic Disorder (as many do) before they found out what was really wrong, Dysautonomia.) we kept the medicine to help with insomnia. However I am starting to have a rough time falling asleep again. Rest today,no worries, no stress aloud here just me, my loving dog and my slanty  bed. Oh and my fancy lights and calming music... And the Iv pole of course! Om om 

Tuesday, August 25, 2015

things are not What they seem

Tonight I am overwhelmed with the tender mercies in my life. They are so clear to me right now and I don't think I have ever really stopped to pay attention to them. I was too focused on getting better or figuring out my next step, or trying to get through the day. I always think, "wow life was so not supposed to turn out this way!" Or "I did not choose this disease." But I know I did in the pre existing. I took this battle, I was given this battle. Tonight I realized how extremely lucky I am for being in this place that I never could have imagined. Sure, I never planned Dysautonomia but good things have came to me through this awful disease. My heart at the end of the day is bigger. I have a better understanding of this life. The importance of life. I never dreamed these awful things Would happen to me but I also never imagined all these good, positive, blessings in my life. Like my loving support group of strangers who battle the same battles as I do yet take the time to help me or pull me up when I need it. I have never met a stronger group of people and I never would have without my Dysautonomia. God loves me and he loves you I promise that! I have have so many heaven's  blessings. such an out pouring of love from family and friends (and strangers) The simple little things matter. The heart matters. I now could never imagine a life without the tender mercies that Dysautonomia brings me-Chelle  

Monday, August 24, 2015

cards

My Grandmother has been hospitalized for the last few weeks with a lot of blood clots. She seems to be very weak and just overall not doing well. I guess I talk to mostly I'll people but I realized I should be sending her a card and I am going to start writing letters. Who says pen pals are out dated with the Internet? No email or text can send the thought and love a hand written note or card can. So that's my new thing!  I will also be sending to my chronically ill friends in hard times.  That's what I accomplished today. I am now worn and tired -Chelle 

Friday, August 21, 2015

Stepping Stones


Today I did something so amazing!! I with all my physical challenges accomplished a goal I have wanted to conquer for YEARS!!! My body has been to broken and weak. Now I am not declaring cures in any way but I had the best day today!! I walked my old stomping grounds, Fools Hollow Lake. As a kid we spent our summers here since we live so close. And we would walk around the path countless times. I have shed tears over the thought of not being able to probably do this again. I have had countless physical therapy (rehabilitation) and several illnesses take me down. I still did it. I am feeling so tired and sore but so alive inside. I know my savior stood beside me and has helped me in so many ways this week. Feeling oh so blessed, my heart is beaming!! Keep going you don't know what lies ahead just around the corners of life-Chelle
We ended with a tired and sore Chelle who needed electrolytes replaced and salt via j tube ...but happy!

Thursday, August 20, 2015

Forgiveness

the gospel according to Mathew chapter 18 verse 22, "Jesus saith unto him, I say not unto thee, until seven times: but until seventy times seven."  This was Jesus's response to Peter after Peter asked how many times he should forgive  his brother (Peter asked seven times?) May we all hold love and forgiveness in our hearts for others and for ourselves as our savior's example continually shows us -Chelle 

Wednesday, August 19, 2015

Donate to G-pact

Donate to my fundraiser http://www.firstgiving.com/fundraiser/michelle-woolford/focus-on-developing-a-cure
 I am supporting (G-PACT) https://www.g-pact.org/G-PACT is a wonderful non-profit that supports, helps, and offers resources for patients with Gastroparesis, Chronic  Intestinal Pseudo Obstruction, and Colonic Interia. Can you believe they help 35 countries and 50 states!!! G-PACT also is an advocate for awareness, fundraising, research, and so much more!! They need your support so let's offer it!! After all it is gastroparesis awareness month! -Chelle

All in my stressed head

Yesterday was a very long day. I was I. The e.r. Getting my port "checked " . Sadly even with all my serious diagnosises, several tubes sticking out of me, I still get the all in my head treatment plan. The doctors refuse to do proper testing because it's not necessary (it was so necessary) what happened was I had port pain. When you have a port you always take pain and all symptoms  seriously. My pcp sent me to the e.r for a port work up. Now my worry was a blood clot around the port not in the catheter itself outside of it. My pcp was concerned too because of my history of clots with my picc line. So I was sent to the e.r. For  a work up.  But because I have a dysautonomia I get the shaft. They don't even use that information. Instead they push it aside and simply choose to ignore I even have the disease. The x Ray came about an hour and a half if being there and then The doc decided she wanted me to go home.  X rays show the port placement. I forced them to do lab cultures (so they did those) to chador infection.  I wanted to talk to my doctor just ask some questions but unfortunately the doctor wouldn't even take a moment to talk to me. She sent messengers in. Finally they were sending me home no matter what. My problem was I came to get checked for clots and they wouldn't do the test. Instead they thought it made more since to expose me to radiation rather than to do a test called an ultrasound (simple test)to rule out placement and if I had a clot around my line.  To me the scary part was I  asked, "so I have no blood clot ?" "The x Ray shows that.?" Their reply, "yes your port flushes you have no clot or the port wouldn't be flushing" (the port can get blood clots inside of the device in which they typically can dissolve and continue use) I replied "no I have been saying on the outside of the cathader in the vein.  That's where I previously had them" their reply "you don't have anything blocking your port so you are good" (it didn't make sense)  oh and they tested me for stress because I am "crazy" because they are careless.                                                     So I went back to my pcp she did a stat ultrasound. thank goodness had some prayers answered and no clots were found!!! My pain is a mystery still but I am not worried anymore. It will take time for labs to come back. As I was sitting in the e.r. With my newest scary symptoms I realized I had been just thrown in a room the p.a. Would have left when he entered my room if he could have. I was more  understanding of that type treatment and being treated like I am crazy in the head, before diagnosises but I have some big diagnosises and I can have serious issues. Yet I get treated like I am less than human. No respect. Never a kind word. And it builds on a person. The doctors don't have to like me. But they should treat me and treat me responsibily Not put my health in jeopardy. Because they don't want to deal with the complex girl. I am sick and my biggest fear now is not getting the help I need, when I need it due to someone's judgements of me and my illnesses. I always say don't judge a book by its cover because every book has an awesome story to tell. I wish more physicians would look through the disease ridden body and focus on the person that is right in front of them and remember the oath that they took.  No matter what the situation-Chelle 

Tuesday, August 18, 2015

POTS Has Me Down

For a few days and two weeks I have been down with POTS. My kidneys overacting causing miserable peeing and kicking out my electrolytes... Which of course dehydrates me. Causes low blood volume and then I have, pain, weakness, dizziness, and extreme fatigue. I have slept many hours and most of the others have been laying around watching Netflix hours. Then Sunday morning I was up that whole night with a stomach bug and that pulled me down. Now waiting to hear from primary cre doctor because my port hurts and that's not a good sign. That's this battle though. Up and down and you have two options quit or fight. It's scary. This is hard. But WE can do it and I know this! God never gives us more than we can handle-Chelle

Friday, August 14, 2015

One More Time

I have said it a million times and I will say it again! "What if trials of this life the rain, the storms, the hardest nights are your mercies in disguise" (sung by Mercy River)-Chelle

Wednesday, August 12, 2015

Scars & Hearts

Today I noticed the dinkyest little scar that is above my collar bone. From my port placement. I mean I is like a millimeter... BUT for the first time I actually saw it in the mirror. I normally never notice it (I mean like I said it is so extremely small) I did not like it though. I felt very uncomfortable. Then I started thinking of the scaring that is starting from poking needles through my port. I know it's just a matter of time before that gets noticeable. More prominent. I have small scars on my abdomen from prior laparoscopy surgery, two for Endometriosis a few from getting my appendix and gallbladder removed. More dinky scars. Then I have the tube sticking out of my stomach. That tube that sustains life for me. That tube is literally the reason I am alive. Yes, I do sometimes realize or obsess over dinky scars and a tube. I am human after all. I do realize I could have bigger and more obvious apparent disabilities or disfigurements. I know more scars are bound to come after all I am chronically fabulous you know?! I always remember this one of my favorite songs by MIndy Gledhil "it's not about your scars, it's all about your heart" this is so true! the true beauty is inside us in our hearts! Our spirits are where our beauty resides and what is in our hearts is most important! God loves us and knows our hearts. So today when you dab on the makeup, fix your hair, dress yourself wear your heart as your greatest acceasory! It's the best you have got in this life. Yours truly-Chelle

Tuesday, August 11, 2015

where to find good Feeding tube pads!

I recently have bought some g tube pads. I bought them from Maddys Tubies on etsy and she has been more than kind  to me! I recommend them! Check it out here https://www.etsy.com/shop/MaddysTubies?ref=s2-header-shopname.   (no one is paying nor endorsing this!! I simply want to pass on good Tubie info.) they rock!!-Chelle 

Saturday, August 8, 2015

How to crush pills (for feeding tube administration) on the cheap!

Here is a tip or trick I have found that works to crush all my pills! I have to put my medication crushed through my j tube (feeding tube) due to gastroparesis. This trick is cheap and effective! READY!? I use a coffee grinder!-Chelle

GP Awareness

As I have mentioned I have GP A.K.A gastroparesis. August is gastroparesis awareness month. So here is a tid bit fact of how I take my medication without being sick! I first have to crush all pills (which I until the other day had to do by hand) ouch! However here is a tip GPers! Use a coffee grinder to crush pills. This works like a charm and it is on the cheap! Then I use a 69ml syringe after mixing in salt water (salt for my POTS) and I flush through my j tube. Now a j tube is a jejunal tube. The j tube goes into the jejunal which is the small intestine and that is where my meds and formula go so I do not get sick. The good part it bypasses my stomach so no pukies and less pain but the bad part is less in tummy and I tend to get hungry. Now you know-Chelle
   
 

falling forward

I haven't been posting as often as before. The truth is I have been in a rut. Life is full of ruts but this rut had me second guessing this blog. But tonight it has been made clear as crystal that I need to continue. This blog isn't about me. This blog isn't for me. This blog is to tell my story, my struggles, my misfits, my triumphs, and to share my faith. Because I am chronically ill. I have ups and downs, good and bad. But I know in my heart I want to help others in any way I can. I want my heart and the goodness in it to spread. I realized tonight that though I may fall it does not mean i am falling backwards in life. Most the time I am falling forward and though it still hurts and is hard I am making progress. You see, the blog is not about me it is about something so much bigger. And if you are ill (diagnosises do not matter I don't compare diseases) I am here for you! I support you as a friend and I know no matter how bad it may seem God loves you so much and has a plan for all of us! Keep trying and pushing forward! Say a prayer because I know he hears you. Always feel free to comment or message me your fighting friend-Chelle

Thursday, August 6, 2015

Ugh

Have an appointment today and I am in so much pain, feeling dehydrated, and oh so tired! I am glad I have the knowledge of the plan of salvation. Makes all this so much easier -Chelle 

Wednesday, August 5, 2015

Doctor Loophole

Finding doctors. Not hard. Finding doctors who will stick it out. Hard. Am I a broken record? I wish I was a priority in the medical world but the truth is I am not. Why doctor after doctor, guru after guru decide to just ambush me and push me aside because I have a complex condition is truly beyond me. Doctors have you stopped to think about your actions? Maybe just regroup a little. Go over a checklist?? maybe your patients need you and need to know you are reliable. Your staff matters too. Staff doesn't need to be let off the hook either.  Lying and covering helps nobody. That's the point of this message. Be honest in everything you do. There are wonderful caring and compassionate doctors and staff in this world. To them I am very grateful but unfortunately patients are falling through the cracks of selfishness and lack of following through with the oath doctors have taken. Even the super sick people that you would think, "no way could a doctor ignore that" sadly yes they can. If you are in this battle of the doctor loophole keep going. Do not give up because you deserve care! You deserve the right care. The best care you can find. If a specialist is not willing to hold their end sometimes you have to let the wrecklessness go. Your care definetley  doesn't involve anyone's wrecklessness. Be strong in all you do. Don't let anyone make you settle for less than your worth. You are worthy and so is your care from your docs! Xoxo rant over -Chelle

Today is simple

Today is a simple rest day for me.
(And Mr. Wrecker) Extra sleeping and laying around I overdid and now my POTS is flared up. Hoping it will settle down with some good quality down time! Pumping some extra formula through my j tube today to a.k.a extra nutrition. My feeds have been low wine my new tube was placed on June but I am slowly making progress with it. Working on scaling off one of my possibly no longer needed medications for anxiety. I originally was misdiagnosed with panic disorder as probably at the least 80% of dysautonomia patients do before a correct diagnosis of our neurotic condition. I am proof to always listen to your gut and don't let a doctor make you feel crazy because you know when you are not. That's such a hard place to be in but keep pushing forward you can do it! God never gives us more than we can handle. I do take anxiety medication in hopes to lessen my ANS triggers or stimuli. I do not have panic disorder to be clear it was a misdiagnosis. They left me on meds to help but we don't know that they are. So now,I get to try to scale down yay! -Chelle 

Sunday, August 2, 2015

Happy birthday Sister Sue

Happy birthday sister Sue we love you, yes we do!!! My sister was out of town until tonight so we snook into her house to decorate!! Then I went for a drive with my mom and grandma from out of town! I became very POTSie and I wish I could have enjoyed it but my iv fluids are helping me now-Chelle


Saturday, August 1, 2015

August Gastroparesis Awarness

Today is August first which marks that it is officially Gastroparesis Awarness Month! It also marks the month that makes my Gastroparesis Chronic for an official year now! I have struggled with starvation and fighting for my life (along with vomiting and nausea that should not be possible) Please watch the video below to learn more about Gastroparesis and what it is! Too many suffer from this debilitating condition including, me. So I will make myself heard. I know God has a plan for me and for the things I go through. Lessons to be learned and blessings to be received!- chelle

Thursday, July 30, 2015

love Life, Love yourself

I have had a lovely past week! I feel pretty well considering! I am simply enjoying my time of freeness and happiness! Thankful for my hard times but feeling so blessed to be able to enjoy the simple good times to the extent I get too! Being sick is a blessing in its own little ways! Live life, love life, even when it is imperfectly perfect and remember to love yourself xo-chelle 

Wednesday, July 22, 2015

Herbie

A little over a week ago I did something very exciting!!! I bought my first car (well I have had two vehicles thy were mine but I was in high school) this was my first all grown up car lol my herbie is so much fun!! Love my vw! -Chellle

Sunday, July 19, 2015

Gastroparesis & feeling Very Hungry

I have gastroparesis. Unfortunately all I have been able to find online when searching, starving and gastroparesis or hungry with gastroparesis...and many more similar searches. I AM STARVING ALL DAY EVERYDAY! Hungry! Hungry! Hungry! It's consuming me, it's all I think about and I get nutrition through my feeding tube so I am not literally in trouble starving... It's still miserable! I have also found others with gastroparesis go through this, and we end up eating and making ourselves sick because of it. I don't know what to do about this! I would appreciate any advice and I will share it! -Hungry Chelle.                           I am grateful for Iv food but it's getting old!

Thursday, July 16, 2015

Don't be Afraid to Leave your heart on your sleeve

Most the time in the chronically ill community we put our game faces on, brush it off the best we can, and say ,"I am okay!" With big smiles but what I think I should say some times is, " I am NOT okay." "I am struggling to live with my illnesses" " I get sad too." I don't mean to say we should run around airing all of our dirty laundy to everyone we know... but to wear our hearts on our sleeves to let others in. Especially those with a deeper understanding of chronic pain. Like our spoonie friends! Opening up can open doors for a fellow ill friend to feel not so alone in the war and it will bounce right back to you and you will see you aren't alone with your illness struggles, as well. We all go through dark times. Where I feel alone the most is in my pain, the mental pain but I have come to find most my sickly friends grieve and go through similar things I do. Sometimes letting others see our open hearts (I believe) will bring good things to come. Pray earnestly in dark times for you are never alone. God is there our savior Jesus Christ is there!! If you ever are feeling alone or hopeless please feel free to message me anytime! We can break down barriers of not understanding and hopefully reach a new level of compassion towards others and ourselves. A song by lady A called never alone goes "may you win but stay humble Smile more than grumble and know when you stumble you're never alone "Your friend-Chelle

Wednesday, July 15, 2015

Something Good

I am currently on my porch being eaten alive by bugs! But it's a wonderful evening out! Mr.Wrecker and I are taking advantage of it!! Today I submitted my first few images to the Dysautonomia Project. I am volunteering to make awareness photos about Dysautonomia. I can honestly say it not only feels good inside to be helping a great and personal cause, but something inside me feels whole again. Like I have a use again. My heart is happy.When you don't have something to do every day...or somewhere to go you loose something. But hopefully I am on the path to patch that up! Be you in whatever you do!-Chelle
To learn more about the Dysautonomia Project: https://thedysautonomiaproject.org/

Tuesday, July 14, 2015

Blanket Hoarder

I bought another blanket! I have a problem. It is official!! Some women buy shoes not me I collect blankets! Hope your having a good healthy day and if not stay strong, You got this!!!-Chelle 

Monday, July 13, 2015

Double Tubie Shot

I know I haven't posted a double Tubie photo yet. showing both my g j tube and port accessed. I don't post these pictures for immodestly because modesty is important but to raise awareness about what I deal with on a daily basis. (And others who are tube reliant) My struggles with my conditions! I think it needs to be an open road for patients not to be judged by our tubes. These tubes in me, keep me alive! I wouldn't be here with out them! They make me safe and give my body the fuel it needs. I am proud of these tubes they are a badge of courage. Sure sometimes I miss the old non tube version of me when I ate regular and people didn't stare or act funny around me or turn their heads in discust simply from not having a true understanding of a feeding tube. But humans are humans and it's ok if you don't understand. You probably have not dealt with a tube. But I promise they aren't as scary as they seem or look. Stay beautiful and strong ! Xo-chelle 

Sunday, July 12, 2015

Warrior

https://m.youtube.com/watch?v=gZFjauf_hZg
Demi Lovato signs Warrior wonderfully...
This song hits me, I am a warrior....
"Now I'm a Warrior now I've got thicker skin, I'm a Warrior I'm stronger than I've ever been. And my armour is made of steel you can't get in I'm a Warrior and you can never hurt me again."... " I've got shame I've got scars that I will never show I'm a survivor in more ways then you know"
Battling a disease is never easy you tumble. You fall. You hurt. You fight. You keep going. Because the second your body is touched by this beast that's the second you will look back on with great pride knowing even if you didn't physically beat it...you became a Warrior. You came through mental and physical hurdles. Illness shook you and coiled through you at times leaving you weak and weary. Maybe it took everything this world had to offer...
 the mental hurdles sometimes are the hardest. Definitely the scariest (for me) emotional scarring is as evident a a scar on our bodies to us personally but you can't see those emotional scars on the outside...others can't see them. We have to show them or keep them hidden. They stay deep inside us locked up. Our hearts hurt in ways never thought possible. The mental pain can become more intollerable than the physical pain. The emotional toil can guard our hearts, with the intent to protect us from any further damage.  Gloom can take over...and it will at times. It's not easy. But let it out because once that pain is out... that emotional bag of junk and pain is gone. Peace comes. The struggle to be brave, once again will face us....and I will be brave with you and together we can keep going despite the Struggle. We can't forget the damage the illness brought to our once peaceful life's.But you faught hard. Keep fighting....you are a Warrior! God has a eternal plan for you, stay strong. You have great worth. Your life is so important and in any situation you are full of divine potential. But sometimes a good cry is needed. Don't let those tears appear to be weakness. Tears are a great strength.(even the perfect human Jesus Christ cried out) -Chelle

Thursday, July 9, 2015

My 4th

  Especially Best Mom Ever!


                       Sister and her husband(brother)
I love this grandma of mine so much!! 

My Fourth was good and simple. I went to the parade luckily my family has a business we always gather at (and more importantly it keeps me cooled off so I can go)
Then back home for rest a a bag of saline to keep me going.
Then to my sister's house for fireworks!! Then the 5th in bed recovering!!
       
Taking it easy today... with Mr. Wrecker...I  have encountered a bad Lichen Planus flare and had to up.my immune suppressant and steriod creams, sometimes I wonder how my body does it all I read today POTS patients take three times the energy just to stand... I guess instead of complaining about my symptoms so much I have kinda stood in amazement. Dealing with the yearly nightly monsoon migraines aren't fun but working on my brave -Chelle