Wednesday, April 27, 2016


It's 1:01 am and I have been to the doctors today (insert picture at the 3hour long doctor visit)
 and now am in the hospy in the valley waiting on my meds, food, and Iv. I'm hangry people. Except for the angry part because I am strangely in a good mood listening to Mindy Gledhill Anchor Album. They did steal some of that popular blood of mine out of my Port! Who knows what is wrong not me! I did find out I have low magnesium and potassium. (Which is nutso considering I have 500mg magnesium per day Iv) and low hemoglobin... Maybe those doctors will figure it out tomorrow-Chelle 

Monday, April 25, 2016

Doctor jumble

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. 
At least I have this little doggie to take care of me and hang out! #puppylove 

Sunday, April 24, 2016

My POTS attack

I made a short video about my POTS attack yesterday.(I plan to start doing some video blog posts too now this isn't the 1st one but I can't edit the other ones i made quite yet.... Now this is not a full blown what POTS is it just is what mine did to me yesterday... I've been fighting with this body something fierce two hospitalizations this month and not doing better. I'm frustrated. I had a terrible migraine least night and I have woken up to feel every bit as crummy as yesterday. I am literally stuck in bed today but I keep the lord in my heart, his plan in my head, and his hymns in my ears-Chelle I am very sick today and could use some prayers!! Thank you💗

Thursday, April 21, 2016

Poor HomeHealth Pharma

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..
. So I open the bag (correct for the pump) but it only holds one liter bags...
Well I have a two liter bag that's twice the size. So we will be changing this out probably for a TPN backpack because that's the exact Iv bag I am using. My sweet person who is over all my stuff just called me out of breath from running over to the warehouse where they put deliveries together... I keep getting the wrong tegaderm because they had these little ones in the box that held the size I was suppose to be receiving... So she herself removed all of them and fixed that issue. Above and beyond her job. Big thanks to her!! Seriously she did not have to go do that but she was kind enough to get to the bottom of it. I also will be getting the right bag next week. Phew Being sick is a lot of work isn't it?-Chelle 

I'm gonna 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!
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.
That being said I have a hard time in the sun between my sensitive skin made worse from all my medicine... I also can't cool my body down. I am heat intolerant so I have to be extra super careful not to give myself heat stroke in a few minutes or put myself into a POTS flare. It's a catch 22! But this super sweet dog that would do anything for me needed some time outside so I risked it... But I'm pretty sure a little sun is good for me too! I miss it!!
I mean look how happy he is...
We did not last more than a few minutes and for some strange reason my tummy started hurting pretty badly  so we came back inside and I am feeling better. Spring is here-Chelle 

Wednesday, April 20, 2016

I don't want to be left behind

When I was 14 years old I started having female issues... They started talking about me having Endometriosis. My mom and I knew nothing of that disease... Which led my mom to the Internet. I remember she printed out some papers she found about Endometriosis. And I remember being really upset because it said it was one of the top causes of infertility and back then there wasn't so much information on the Internet about this stuff. It was a scary chunk of information. For the first time in my life I was loosing control over something I was not willing to bargain with let alone give up. A year later at age 15 I had a laparoscopic surgery to see if I did in fact have Endometriosis. The new doctor I had been seeing promised me before surgery I did have endometriosis (at that point I was relieved because I have convinced my 15yr old self that I had cancer). Surgery showed  Endometriosis and I was officially diagnosed. At that point I struggled with pain and health issues. I seemed to only be picking up more and more new symptoms for the next 7 and a half years. While searching frantically for help. No docs could figure me out. I was crazy, depressed, dramatic, attention seeking , oh but some did believe me once In a while but their help was always limited nothing came together as a whole until I was diagnosed with POTS or dysautonomia. As soon I started feeling like I had learned what the condition detailed my stomach failed me and paralyzed due to the Dysautonomia. I then fell in to that world quickly and am now tube fed. I started looking into pregnancy and these diseases because none of my doctors would really talk about it. In fact at that point most of those fancy specialist had the motto the less questions the better ( a motto that I highly disagree with) so I looked into studies and two things basically can happen (keep in mind lots of women have had babies) but one way was worsening of symptoms during pregnancy leaving a hard and stressful environment for baby and mom. But then having improved symptoms after birth. Then the other outcome is getting better during pregnancy and health declining down after birth. I had a heavy heart but pretty much then made the decision that it wouldn't be fair or safe in my book (I mean I live in this body I know what it does) it wasn't fair to the kid to have issues due to my body not working nor was it fair for me to risk my health declining anymore than it already has. I mean I'm already struggling with the norm and not winning. But I remember the night I was watching the little couple on TLC and they adopted their son Will. I was overcome with joy and I though to myself I can do this I could see myself doing that for the very first time. And right then I knew God had lifted my heavy burden. I've had peace with the situation every since. (Isn't it funny how I started out with not being able to have kids being my nightmare to not wanting to have kids on my own and adopting). Life changes just like the seasons we never know where we will be in the next 7 1/2 years. Sometimes I wonder why me? Why can't I be like everyone else? But I know why and in the back of my head I always hear it and  " 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

Tuesday Wednesday

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
extension cord for my Iv pump when me and my mom went the other day (the sole reason for going). I am glad to be home because I am now super worn out and ready for a nap.
Yes a nap after doing well not very much. And I hooked up to my Iv fluids idk if it's from having labs done but my body is telling me it's done so I will rest now these are my pump chargers and my lights and normally my phone.
It's my "charging station" lol and I just got cozy in bed and I realized I forgot to take my anti nausea meds now I have to get up and go take them ... After I rested I did feel better but I did start a migraine last night but slept it off! This morning I received my delivery of supplies with an accidental flaw my tegaderm was super too small.
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 

Blan Monday (yesterday)

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! 
I also worked on my special project I am starting he he! But I won the day because my hair is curled, there is a bow in my hair, makeup on my face, & most importantly a smile on my face and a full heart...
P.S. Me and Mr. Wrecker sang today haha we carry quiete the tune together... Just kidding it's just a silly photo that looks like we are singing!! 

Monday, April 18, 2016

We Willingly Agreed to Life

As I've mentioned lately in some of the ugly parts of being chronicly Ill is that it drains you emontinally and then you get sad, depressed, and anxious. I've been dealing with this more probably due to me being so much more sick than I normally am... Lately. But this morning I woke up and remembered something I haven't had site of lately basking in my pitty party. Was that (and I believe God was telling me this) that God only gives his biggest battles to his toughest warriors... That's what I woke up to thinking. It's pretty much changes my whole perspective today. I have a purpose we ALL do! And we are all very special individuals who came running to this life to get our bodies no matter what the cost. We wanted this body we are in now so much at one point we agreed willingly to come. Knowing if all these hard trials where going to come with the package... Life is a precious gift. Our bodies though some broken and mangled...will be whole again in the reasurection. And we will be victorious. This I know with all my heart. I may not be healed now or ever on this earth. In fact that chance is not existent at this point. They don't even know what's causing or happening to my body. They have to have those steps to find a cure. And though sometimes I can't see that being sick is worth it. And I feel so tired. I know Heavenly Father is there no matter how alone and abandoned in this life we may feel if we stay true to the faith and true to our Father in Heaven we will be okay. In fact we will be more than okay. I am sure he'd love to fix us and take away our pains but there is something better for us waiting ahead. Maybe not in this life but in the next life. Try having patience, I know it's hard but hey you're  one of his toughest warriors. He put you here because you can sustain the battle. Fight on warrior-Chelle 

Sunday, April 17, 2016


finally got my nursing visit from home health for instructions on how to use my pump. They had to come up all the way from pheonix (3hours each way). So I finally have my pump for nightly Ivs m, 2liters a dat of normal NS and 500mg of Magnesium. However 6 hours is too fast and it's causing my to become dizzy and pee too much. It's so fast my body is not holding onto it. It's not using it just kicking it out. So today I'll be contacting neurologist to say hi my body isn't thrilled with this amount this fast, it's making me miserable.  We will see what he says... It better be yes Michelle you are right we will slow it down.
Today I washed my Tubie pads (I sink wash them to get a better clean) (they go around my stoma to aborb any stomach leakage and they prevent scar tissue from forming around the stoma which is a big owie) I have a million and I got most of these all but the white one from Milostones and Maddys Tubies on Etsy!! Love them!! I am working on a few care packages for some spoonie friends! It makes my heart feel so happy💗 do unto others as you'd do unto yourself! Happy Monday-Chelle

Saturday, April 16, 2016

Lifes Tender Mercies

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

Expensive spoonie life

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

Bio patch

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

What is a spoonie or the spoon theory?

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 

The beginning of the end of a long dilemma

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

General conference on a Tuesday?

I've only viewed the morning session of Saturday's general conference (LDS) that was two weeks ago I was in the hospital and the bits I watched I couldn't remember from all the medicine and last week was just a longer version of that time and this past weekend I was in the hospital once more. Finally I have a clear head again and was ready for some of that wonderful spirit of our loving Savior through the Holy Ghost... Especially after my struggling day yesterday. All the messages I could reside with and my heart has been lifted and I feel renewed... One thing that I will be doing is praying more and simply putting myself closer to the Lord. I'm so very blessed in this life though it definitely is not easy to see all these trials as just that, blessings. Oh but they are. I am so blessed! -Chelle       

Monday, April 11, 2016

Uphill Battles

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    
D&C 24:8 "be patient in afflictions for thou shalt have many; but endure them for lo, I am with thee, even unto the end of thy days." 

A better day & angels

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

Sunday, April 10, 2016

All of it in a nutshell

I am back home with my bestie
So I thought I'd wrap up everything that has been going on with me the past few weeks. I was hospitalized two weeks ago for two days (the first time) with a bladder kidney infection... I was sent home to continue treatments of antibiotics and to get on regular Ivs through my neuro who is over my Iv and port care... (We found out I was not meeting my fluid requirements per day) I wondered why I was constantly starving and since the Ivs I am glad to announce my starvation binge eating on a broken tummy has ceased and I feel better. Starvation is a real torture so please donate to starving families when you have the opportunity because I promise it makes everything harder.! So back on track here... The next Thursday I saw my pcp and she and I agreed to go to er because I was still fevering and not well at all (which had me very worried about sepsis with my port and gj tubes yikes) and she called the er Doctor and talked so thy had an idea and wouldn't ignore me because I usually get very ignored. Because my illness is "invisible" except it's not heaving for hours on end is not invisible and being in a lot of pain and don't get me started lol so I went to the er and thy took me back rather fast and I was shocked about that. I figured out why and this is good info! If you are immuno compromised be sure to always add that to your list when you get to the er and always wear a medical mask! This is very important through all of your care if your immuno compromised they need to be aware so they can take the precautions needed for your care. They did a ct scan and a lot of lab work found nothing and I cried because I always do when I am sick and nothing is wrong it's just frustrating. Yes good news but not at the same time. So they kept me and and treated my what we all decided was a flare up if my dysautonomia and Gastroparesis from the infection. Basically my body goes a wall over every little thing. So they got me under control enough to come home and reuse my care here. Which sleep is good and it's hard to sleep in the hospy so I am thrilled to be home! I am not well yet but getting there. I've said many prayers and I'm certain they've been heard this week. Hoping this flare passes 
I came home to a surprise I ordered my Iv pole steering wheel and it came quickly and wah-lag a present for coming home lol. If you have an Iv pole I highly suggest getting on ode these they help so much with keeping it stable, easier to move around, and when I am worn and dizzy It helps hold me up and oh it helps you to not run over your feet! Here's the link where I found and ordered mine! It's wonderful I wish I had. It a year ago!     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

Home bound

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

Hospital bed morning update, well kinda

My week has been long. I just simply don't feel better. I still have a fever, aches, extreme fatigue, abdominal pain, back kidney pain, relentless nausea and gags. No answers. My tests showed nothing. )which is good but I don't do well when nothing comes up wrong) after years of misdiagnosis and having 'nothing wrong' I had an awful lot wrong. It scares me. I simply worry when nothing is wrong when something is wrong. It's my lot. But I cried it all out last night after having a long sick week. No answers. And a million scary side effects from medications. I am the side effect queen that's my title my body wear that crown with high dignity. It really likes to show it off. But this morning I woke up after maybe three hours of sleep to my nurse unsuccessfully drawing blood from my port. It works to flush but it won't pull back blood. So I will have to address that today hopefully they can clot bust it and get it re working. I'm listening to fight song by Rachel platten. I woke up happier today and I feel ready to fight some more, and take another step forward, one day at a time. (Maybe today I'll take it by the minute-Chelle              

Wednesday, April 6, 2016

Holy moly

Today has been chaotic!
I received 6 ivs. And the doctor called to confirm he wants me to try having 2 liters of Iv fluids and my liter of formula A DAY! Gulp. (No pun intended)
then I start to unload supplies and put them away which is always a chore and honestly it's like I've put myself in a time capsule and am back to October 2014 when I was on tpn.
I am totally not happy about this but I know it's what I need to do hand down. As I am unpacking I got the wrong huber needles (so much for my deaccessing and letting my skin breath after my Iv today and accessing in the morning) a little skin vacation especially since I am allergic to the bio patch I am currently using.
Oh this, my new pump that's bigger than I am? That's not going to last long no way Hozay! I travel to doctors out of town a lot! And  I already have my wheel chair formula extra supplies I seriously just have no space left and I'm hooked to that Iv pole a lot no way am I pushing around all that weight. No. And my new home health tech is confused my orders say at night to run ivs in sleep via 6htd she told me I'd use it for an hour or so... Hmmm? Two liters in an hour or so I don't even think that's safe or possible. Today is a hard day all I can do is pray things get better with time and tomorrow is another day. Being sick is so hard but there's a reason I know it...-Chelle 

Tuesday, April 5, 2016

A recipe for CANDY to get rid of constipation

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


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 

Monday, April 4, 2016

My hospy weekend

Well I spent my weekend in the hospy for a bladder kidney infection. While I tried watching general conference I only got to watch bits and pieces and now everything I did listen to is all mixed up in my head because I was on a lot of pain Meds... So luckily because of I can watch it when my head gets clearer and clearly seek the messages to be found in general conference when I am fully well. Isn't that such a blessing that we now have the technology that no matter what we don't have to miss out on general conference ever again?  I think it's amazing! Best of luck on this Monday. Lots of love-Chelle