1:01

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 

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 

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💗

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 

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 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