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 

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 

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  

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 

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!

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 

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 

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

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

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

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 

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

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 

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 

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

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