6-26-16

It is thundering outside...As I lay here in bed at 12:07AM, I lay in pain from my Endometriosis. Guess what folks? This is why surgery removal is necessary. Cut all those cells out and move on for the third time . I can not believe the day I had. I made a doc appointment then went to the ER for the chest pains I've been having. I didn't really think something was wrong I assumed POTS or something with my port but all was well. Thanks goodness.

But one thing I know is I am tired of begging and wagering my

Medical care. I was treated very poorly (like that's a new thing) and it's a whole new level of "are you kidding me?"  I'm human don't kick me when I am already down. Judge me for turning down an Iv I did not need. Because I had already had two before inset foot in there and definetly was not dehydrated...That if I took my kidneys would pull out my electrolytes, and yes I don't take the ibuprofen based meds... They mess with me and make me pee and I think it's the blood volume, and yes I will question when medications are given in higher doses then I have ever had....and that I just had a dose of 15minutes prior. I will be my own advocate. I'm not trying to make your job hard selfish little nurse. You walked into my room with a horrendous attitude and I will pray that your heart can feel better because by the way you treated me you must be in a lot of pain! But don't judge m. I warn and do the best I can to help. You weren't there to see the hand written medical lists, answering all those questions, please don't make it harder then it has to be. I would gladly take that medication that I am being too "dramatic and wasteful" with but don't you see that medicine if taken would cause  this body of mine more harm. So I get rejected and doctors won't give me anything else they cave up. Have a little power trip. And in the meantime while all this is going on I am hurting badly I am not okay and today I wretched for a long while...supposivley because they thought it was a two year old in another room... If you have heard me wretching it doesn't sound like a two year old. Don't lock  people up in a room and just leave them there.But I am fighting. I know God has plans for me...somewhere-Chelle 

A POTS Flare Saturday 6-25-16

I woke up in a POTS  flare and I could feel my heart beating funny I couldn't feel my arms and hands (or fingers) I woke up feeling like I had been ran over by a tanker... So I slowly at up flushed my port and hep locked it. And then took morning meds. I am having a lot of pain today and doing my best to keep all my pain at bay... Pain makes my POTS flare, then I wretch for hours at a time and end up in the hospital and the feeding tube I am is a high risk that I could vomit it up. In fact I ended my evening throwing up last night... So we are being extra sweet to this body today and resting and feeding and takin our vitamins. Also despite being so POTSie I knew a small work out would help. So I did 1im of cardio on the glider. I also have had my crazy compression socks on all day... They did not look this wacky on the small picture online but they do their job so that is what matters!! Plus everyone comments how fun they are.

They definitely are bright lol

i have had that bruise on my knee for q week now and it hasn't shown the slightest of a sign of going away.. I am actually covered in these little bruises some I have had for three whole weeks. I think it's a malnourished thing body won't heal without its fuel... Womp womp... We hit 25mls yesterday but I had to take a lax so we haven't been able to go any higher maybe this afternoon we will up feeds another ml?  I still have my low grade fever. I have had it since February it's the end of June! I guess taking me off immuno suppressiant did not work... Because the fever is still here. However now I am battling my lichen Planus and struggling pretty good with the issues and infections that come with treatments... I have concluded my low grade fevers are more then likely my Dysautonomia. It makes since it's an autonomic function... I did open a support group for Gastroparesis... It is a closed fb supple group called The Gastroparesis Vent. https://www.facebook.com/groups/822241234573424/

This has been keeping me busy while resting today...  if you have Gastroparesis and would like to join do so!! Invite your Gastroparesis friends but only patients with Gastroparesis can join. Please, if you Do NOT have Gastroparesis don't try joining. It's not that we don't love you but you don't belong there. ------Oh and if you missed it I opened a POTS support group yesterday closed as well on Facebook. It's called Come as you are POTS Support Group.

https://www.facebook.com/groups/1771944973081623/  Same thing as above only invite yourself if you are a POTS patient* and bring your POTS friends! Please do not ask to join if you do NOT have POTS! Thx! These weren't planned by me they sort of just happened but I am excited and God works in Mysterious ways right? Maybe it's just the thing I need right now. Putting my faith before my fears xo-Chelle 

How to make feeding tube have a clamp & medport (that doesn't come with them)

https://m.youtube.com/watch?v=U8QTp-xd33I how to change your feeding tube without a clamp or medport into a tube WITH a clamp and medport! Check it out!! My lil tips and tricks -Chelle 

Another day

(Tuesday update)Doing better! Tube is good! Still battling the worst yeast infection ever and surely lichen planus. I am so worn out I have spent my week in bed or on the couch. Today however, I felt like I could work out again (its key to my sanity and it helps my POTS) so I "ran" a mile on the glider and walked a mile. I was super duper shocked that my body picked up where it left off last week. I literally will walk circles around my house if I have to in order to get my blood pumping these days it's that crucial (definitely not a cure but it helps my system)  can't be outside with the smoke. so I am proud of my little self. I also had a frustrating call my surgeon's office called to tell me I needed a cardiac clearance and ekg by a cardiologist before the 8th of July!!!! For my surgery July 26th. What!? They couldn't even give me a referral to one? So of course I went to my neurologist because cardiologist needs to understand POTS... I called them and who would've know I was already a patient I saw this very cardiologist in 2013. My mom said she remembers but I don't at all! I prayed big time about this feeling like there is no way to pull this appointment off and it's not enough time! Ah my surgery will be post poned... But I got in the 6th!! High five! I relied on pure faith I literally hung up the phone and prayed and God fully came through within a few short hours. And I didn't have to stress. Lesson for today: lean on your faith! -Chelle (today's update) tube has healed and I am looking over photos I can't believe how taped my abdomen has had! Poor skin haha

and I've been having chest pain which I was concerned was related to my port but my Amazing doctor squeezed me into her schedule and I had a rib out!! What what?! Haha I am so relieved and she put it back in like a million gold stars for her!! I am blessed to have such an amazing pcp who literally cares about me I'm not a number or a paycheck there. So so very blessed! I still have a low grade fever believe it or not! Idk why but I'm not concerned right now I think maybe it's my autonomic nervous system malfunctioning?? Could be. My weight is still down a bit but I am slowly getting those feeds back up! Literally one day at a time :)  Oh and all my POTS friends if you'd like to join my new support group you're more then welcome on one condition you must have a POTS diagnosis!! Gotta keep us safe! So if you don't have POTS sorry!! the link to the closed Come As You Are POTS support group and you must have POTS to be apart of this group* please if you do NOT have POTdont request an invite it's not that I don't love you but we have to keep our members safe first and for most thanks -Chelle 

https://www.facebook.com/groups/1771944973081623/

Cardiac clearance crunch

My sleep schedule is so off I keep waking up around 11am yikes! And it makes me so mad. I had just gotten my sleep schedule lined out u til I got into that hospital. I woke up to a phone call that I need cardiac clearance before surgery and I need the clearance by the 8th of July. Ugh i do not know how I am going to pull this off. I don't even have a cardiologist. I guess the part that makes me angry is they didn't even have a name of one cardiologist to refer me to. So here I am again on my own trying to pick up some more pieces and get things done on a rediculous schedule. I just keep reminding myself to have faith. You say your prayers put it in the lords hands now. Wait and see-Chelle 

Fathers Day Weekend

My week was rough. But we all came together to celebrate the fathers in our family. Happy Father's Day Dad!

Me and mom went to pick up some of our stuff we had stored at my Aunt & Uncle's house. I had like no clothes and needed formula and some medical stuff so we got there and decided to pack up as much as we could to return home. For me to be able to do that was nothing short of a miracle. Did I pay for it? Yes, but it was. Worth it to help my Momma who is constantly helping me. Teamwork. Sure my feet needed to be up and I needed more rest but I did it! 

Now today (Monday) I am staying down all day on my couch. I am still recovering a bit from my new tube placement. It's healing nicely. Plus super smokey so I have no choice but to stay indoors. I have bad allergy induced asthma and though it is better since I am older I am a high risk..                                             We stopped at the store and I just couldn't help myself my granddad needed flowers for fathers day at his grave and a quick visit.

He was my angel for so long lifting me up in my hardest times. I must be stronger now and he doesn't hang around so much anymore. But I know he is busy as a bee up there in Heaven and he still knows what's going on here.

I found a way to "eat" and it's since my docs put me on a 24/7 stomach decompression. (Oh by the way, while we have Tubie talk my old tube was making me so I'll due to it having a hole in it) I drink those cold Starbucks drinks (I am a coffee holic and I have gone two years with out any!!) But I knew it would  drain right out, as soon as it was put in and so now I take my drain bag in my backpack with my feeds and I drink my yummy coffee drink, while everyone else eats dinner. And you know what? I felt like full and good about it all. I wasn't just sitting there watching everyone eat awkwardly. I was participating...Now I haven't had a problem with it but it just is weird when someone who ate forever just can't eat anymore. Hope all Daddys out there enjoyed their special days. Please keep continuing the prayers for the Cedar Creek Fire and the communities effected and those firefighters ( it did jump a line last night towards pine top area) -Chelle  

Cedar creek fire

Our town is under a pre evacuation notice from the cedar creek fire.

Though this photo is from two days ago, we have a lot more control to get. I think it just needs time and we will be okay (my personal opinion)...(my sister took it while leaving our house after her and my aunt/uncle helped gather the important stuff up as I was in the hospital in pheonix as well as my mom with me. We came to my aunts house about 30 minutes out of Show Low and they graciously took my pup and cared for him! We came home today because the smoke is going the other way from wind changes. We only brought a days worth of stuff and left the rest to be safe with them in case of evacuation or my asthma not handling the smoke. It's so great to be home. This fire is truly hard for us all it brings back horrible memories from the rodeo chedisky fire. I was a kid then and just remember it like yesterday. It's been a stressful week and our town and surrounding areas could use some good prayers, please pray for the fire fighters safety as well! I am feeling a lot less pain from having to cut my stoma back open and getting the new tube. A little stronger today as I detox from all those nasty drugs (pain, way huge amounts of Iv nausea meds, and anesthesia) less circles around my eyes and My feeds are back up to 20ml per hour, I have a long ways  to build feeds up again, time will tell-Chelle  idk who put this on face book but it spoke to me and I saved it so I wanted to share it with you, please never give up life is full of crazy stress and hard times (that's why we are here to learn, stretch and grow... So we can get to the other side with our wisdoms and strength  for heaven's work)