Wednesday, April 27, 2016
Monday, April 25, 2016
What to do when you have a million doctors and no one knows what to do???? So they ignore you (some) and pass you on to the next guy assuming you will get help? Or they give you a "patch you up" medication upping which is them trying and I appreciate it but I am so sick. So sick no one knows what to do but more frusterating no one even sits down and really tries. Minus my wonderful pcp. I don't know what I'd do with out her she has saved me time and time again. I'm so sick of seeing a million specialists to get sick and still have no plan or action. I'm feeling frustrated and I'm getting another migraine for the night! Needing some help! Going to the emergency rooms doesn't work because when your sick like me they typical don't find anything "wrong" and we are complex bodies so we just get the typical Iv blood tests and get send right back to square one; home. It's scary doctors you think will always be there to fix it or help it and honestly most the time they either can't or they won't. I aways want to be hospitalized when I'm this sick in hopes of finding something but more to keep my suffering better under control.its a catch 22 I always loose too -Chelle a patient worn out. I wouldn't mind prayers right now for my crazy health to get better it's been a solid month of this and I know I need help and answers.
Sunday, April 24, 2016
Thursday, April 21, 2016
So today I had a correction delivery... We swapped out pumps because my pump was prescribed to give me 2 liters in 6 hours which was way to fast for my body. It made me dizzy and my body didn't hold onto those fluids. A sure sign it was simply going in too fast. So new pump with new settings check! Then I grab the tegaderm out of the bag and it's the exact same wrong size as yesterday
They did it again!! After I open my bag that I requested because in ten hours I might be leaving town early to go to specialists or have early testing... Or in the er. Who knows but I like to be prepared..
Yesterday Wrecker begged me to take him outside. Which is fair he is a dog it was a nice day and he definitely deserves to soak up the sun.
"I'm gonna soak up the sun, gonna tell everyone to lighten up, gonna tell em that I've got no one to blame. For every time I feel lame I'm looking up. I'm gonna soak up the sun while it's still free. I'm gonna soak up the sun before it goes out on me." (If you don't know that song I feel sorry for you go look it up its by Sheryl Crow!
Wednesday, April 20, 2016
" it's going to be okay" I will get my fairytale one day. And if your struggling with these things it is okay to be jealous and cry. It's not fair. But don't hate or wish anything upon anyone else. You see if you have hate in your heart that's not going to do you one bit of good... But if you remember you have a plan, that God gave it to you. And work with patience in life you will be okay. We don't always get what we want in life but we get what we need. So cry let it out and move forward with hope and faith knowing God has your back and there will be a day when you get your turn too. And remember no body lives a perfect life we all have our own problems and struggles in our own ways! Lots of love, -Chelle
Tuesday, April 19, 2016
So today I woke up and showered, then got ready wow!! Big deal for me to use all that energy up right off the bat! Then I got my orange jugs of urine and dropped them off at the lab and went to Iv therapy to get some blood stolen from my port. (More lab work, it never ends) then I walked all the way out to my car and went to get my keys and I left my purse in Iv therapy... So I had to walk all the way back phew! Workout for this POTSie. I'm getting better and stronger from being so sick but my body got so weak during al of that. So I got my purse and decided to go over to Walmart since I forgot to get my
But luckily I found one I didn't know I had in my storage and I am now trying the regular clear tegaderm instead of the orange (that is suppose to work well on super sensitive skin). I am hoping this tegaderm does better. They also sent me a stat lock so I'm trying that out too to see if it holds the tubing in place hence making my tegaderm stick better around the tubing because it's hard to get it to not come up off the skin. So here is my newly accessed port for the week! Nothing feels better then this!! Ah clean again!
Welcome to the sick life-Chelle
Today was blan.... I did my 24 hour urine test for my kidneys... You have to pee in this stupid jug for 24hrs. SERIOUSLY it's an artform they need to make it easier. Enough said. Bye Bye orange jug! Peace out!
Monday, April 18, 2016
Sunday, April 17, 2016
Saturday, April 16, 2016
If you could only feel the spirit in my room tonight, the way I can feel it. It's so warm and light. Heaven truly sparkles... You just know....You know it's goodness, for it shines so strong. You'd too know heavens on earth. I had a terrible cry and I just have been sick too long. It is wearing me down. I am seeking help and using the proper tools for my mental state) Being sick is super taxing!! But in the moments when I'm up late and I'm in my bed listening to what ever flashes through my mind and speaks to my heart(tonight love one another) or a talk. These are the miracle moments. I feel so strongly that I'm going through the trials but when I finish, I will get to bask in my eternal victories. And let me tell you there will be a gold medal awaiting for me at those pearly gates 🏅and I will be whole again. Until then-Chelle
Friday, April 15, 2016
Being sick is expensive! Had to buy a mini fridge to store all my Ivs in.. The Tubie life is real. But God has a plan for me that I know that's my rock this week is that God has a plan no matter what. Here's a true tubie fridge: Meds, Ivs, very tiny juices, and the staple ginger ale ... Oh and of course POTSie Pedialyte can't live without that!
Wednesday, April 13, 2016
I was just up thinking about needing to access my port in the morning... And that i will be trying a new bio patch
That's when I found this darling yet very informative video and of course I had to share the link! Excited to try these out tomorrow!-Chelle here is the link go learn about catheters and germs people!! Lol https://m.youtube.com/watch?v=I8_u_INRBlM
The spoon theory was made up by Christine Miserandino accords to FAQ. She used it to answer her friend's question of how she made it through being so ill? She first took all the spoons from her table (at a restaurant) as well as off other tables. Leaving her friend even more confused. Then, she started her presentation; "each spoon is how much energy I have per day", She explained to the friend. She wouldn't know how many spoons she'd have until she woke up that very day. She told her friend "you just woke up (then removed a spoon), you took a shower, (removes another spoon), ate breakfast (another spoon bites the dust)". By around lunch time they were out of spoons. And her friend said but I'm not done with my day... She responded, "Well, you can borrow spoons from tomorrow but you don't know how many tomorrow will bring it often leads to having to spend the day in bed." For every task a chronically ill person looses a spoon. Even simple tasks like waking up... We only get so many spoons a day it's important to learn how to use our energy on what needs to be done most or what we would like to do most. My friends that's the spoon theory in basic form. So a spoonie is a name for a chronically ill person via in correspondence with the spoon theory. I am a fan of this theory-spoonie out,Chelle
Home health pharmacy nursing is coming up to my house to see ME and I am so relived and excited!!! Oh it's been such a horrible battle with these infusions and getting a pump hopefully after Friday I can put it behind me because I won't lie I don't know if I can fight any longer with these things. Fighting for your health is relentless. Fighting for your proper care in an abnormal situation is pure torture!! But when I started to pray humbly to my loving Heavenly Father and put my trust and burdens in his hands... Instead of freaking out and being upset and anxious... Everything came together pretty effortlessly. That's no coincidence. Okay lesson learned check! He is good, so good, come unto him! D&C 29:6 "and, as it is written-whatso-ever ye shall ask in faith, being United in prayer according to my command, ye shall receive." xo, hugs to all-Chelle p.s I received my pump today whoop!!
Tuesday, April 12, 2016
Monday, April 11, 2016
Listening to hymns trying to relax while my head is spinning out of control. A lot of sick people don't talk about the ugly but I do... I go through days or weeks even of relentless stress and depression because I am constantly in battle. An uphill battle I very rarely win. Not just the bodily being sick battle but the battle for the care I know I need and deserve. Sometimes medical professionals skip this part leaving their patients in the dark or left to mop up their mess. Especially when your dealing with home health treatments all on your own. You see I don't have home health nursing I had no choice but to take on all my care head on last summer when my doctors treatment did not meet "protocol" when you have a crazy disease like me we don't fit into typical protocols or well normal anything I mean who has to have 10,000 mg of sodium a day to be healthy!? Ya see my point. This past two weeks I've been in a battle with my home health pharmacy which looks like after much stress and worrying I'll be having to make a trip all the way to pheonix to learn how to run my Iv pump (probably will take a whole of 15mins) I'm so worn. I don't always understand why this whole sick thing has plaqued my life but I know God gives his toughest battles to his toughest warriors. So that piece I will keep in my heart and keep fighting my battles one day at a time-Chelle
You know you have to be feeling better when you do your hair for the first time in weeks. Yikes! Feeling better I am still weak and I am still having an unhappy tummy but it's kinda life with Gastroparesis it just is a grumpy gi tract. I have an appointment and am hoping I can make it on my own so far so good. I'm missing my herbie (my Volkswagen) I miss driving it's been a few weeks. And now I'm stressed because it's been so long. The anxiety vortex that comes with being chronically ill.
I started my day out (after taking care of business ivs, Meds, care) then I decided I'd listen to some music. Music has always been an out for me. The song came on stand by you by Rachel platten and it always makes me think of BeBraveBaylee and how special she was (Baylee was burned severely in an accident last 4th of July. She fought such a hard battle for months. I was always so proud of her and rooting for her on the sidelines. they also used this song in a memorial video they shared. I remember praying for months with Baylee and her family even though I was a complete stranger and still am. I think of that family often and I know that little angel comes around and says hi occasionally when I'm having a rough time. Typically that song is playing. The first time I was driving home from a hard day of physical therapy and I felt so weak and low emotionally. I was crying on my drive home and this song comes on and I hear 'you all stood by me now I'm going to stand by you' and I automatically knew it was little sweet Baylee comforting me on a bad day. I am blessed because I know I have angels on the other side of the viel to comfort me and I'm lucky enough to once in a blue moon "visit" with Baylee. Heaven is here on earth pay attention to it! Xo-Chelle to learn how you can help keep Baylee's legacy going or if you'd like to see how amazing Baylee is here is the link https://www.facebook.com/BeBraveBaylee/
Sunday, April 10, 2016
I am back home with my bestiehttp://www.medicalresources.com/shopping/proddisplay.asp?catalogid=18166. I aprecbthe thought and prayers so much and I am thankful for all of you!! I am so very truly blessed... May you all be well xo-Chelle
Saturday, April 9, 2016
Well my labs continue to show nothing wrong so that is good. We are thinking it was a flare up (Dysautonomia/Gastroparesis) from having the infection. They kept my pain and nausea under control the past two days. They reaccessed my port and now its functioning right. And yesterday was my 6 month feeding tubeiversary (6 whole months the longest I've kept a gj tube)now I Get to go home! Yay!! I'm ready to break out of this prison lol. Peace out I'm going home, hopefully this time to stay!-Chelle
Friday, April 8, 2016
Wednesday, April 6, 2016
Today has been chaotic!
Tuesday, April 5, 2016
I was on Pinterest scrolling down the popular screen and this little gem caught my eye isk why I can't eat... Guess it's my medical mind at work! So I read it and hey I found it to sound like it was worth a try. Though someone might just like this little recipe it's better then taking nasty laxatives in my opinion... The blog is mommy potamus... Here's the link http://www.mommypotamus.com/constipation-candy/
I spent a large amount on the phone with home health pharmacy. And I've talked with my neurologist. Being a tubie is a lot of work and using home health is a lot of work sometimes just because it's a process. Between doctors and finding supplies you need and that work for you. Then I took a few hours nap. I can tell antibiotics are working and I'm starting to have less pain. I ordered my Iv steering wheel tonight. It's my present to make up for having to go to full time ivs. Taking it one day at a time-chelle