Tuesday, June 28, 2016

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 

Saturday, June 25, 2016

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 

Wednesday, June 22, 2016

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 

Tuesday, June 21, 2016

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 

Monday, June 20, 2016

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  

Friday, June 17, 2016

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) 

Wednesday, June 15, 2016

Tough time

Well my feeding tube came out yesterday, (of course after I had gotten out of the shower with a new white shirt on. I looked out the door to check to see if my feed delivery arrived and Mr. Wrecker needed to see to. So I had him by he collar and he pulled a bit and the next thing I know my tube was out (I don't think he pulled it out the balloon looked like it popped) so I let go of the dog and was yelling for him to come home with a bleach tray in my mouth so I hurry and Ross it into the sink. Call my neighbors and luckily they came to the rescue with my dog and I ended up taking a million years and a trip to pheonix.
and am now in Phoenix in the hospital... I did get a new tube (not the right one , low profile) and it's the tube I hate the most. But I guess it will work for now. My stoma closed up and I had to have it redone so I am in a lot of pain now. My potassium has been critically low all day and I am starving and this body is starting to show it. A little low blood sugar earlier. I am hoping for a bag of TPN tonight to feed my organs and help stabilize me. I will be starting feeds at a rate of 10ml per hour. So worn and tired. I have been in withdrawal and confusion due to not getting my normal medications. (No feeding tube =no meds)  plus there is a fire close to our hometown and we are out of town so much added stressors. I want to feel better and go home home. But looks like wqnting and getting are two very different things -Chelle 

Saturday, June 11, 2016

New video on Gtube decompression

  Just uploaded a new video on Gastroparesis amd decompressing the gastric tube aka stomach. With hopes of gaining extra calories in the process. Check out how I am doing this with my Farrell Valve Bag! #gastroparesis #feedingtube #decompression #drain #vent #gtube #chelleshope https://www.youtube.com/watch?v=8OgWDaAkvn8

Friday, June 10, 2016

My tummy

No one has contacted me still, I just left another call and STILL waiting 4 DAYS. I gave up and tried formula because I have to have something besides pedialyte and my stomach hurts and is angry. And I only ran 20ml per hour while sleeping. Plus it was watered down with Pedialyte to help with the transition. Today I feel a little flu like achy, weak, tired, just flat worn out. Ghee I wonder why? But I'm up and showered and resting and waiting some more. Finally this evening, gi called and said to keep doing what I am doing which is living off my ivs and (250cals maximum daily) I also had to fight a war with my kidney doctor and neurologist...they put me in the middle (and I had to call and try changing my hydration scripts from my kidney doc to my neuro) they are working together. I told her they'd want to hear from her like a fax or something... The plan is to up my fluocortisone and try going to one liter Iv with my mag and now potassium too. since it's low always. But now I am just putting my foot down and saying no! (In the future) That's their job at the end of the day all it does is add stress to me and I get no where! so a million calls later home health pharmacy is sending me a messed up but doable order. (Kidney  Doctor wrote the wrong thing down to my neuro) ah! I'm tired. Going home I am seriously starving for a cure that's not just a saying we with Gastroparesis say. People literally are starving to death from this horrid disease. Here's the link to my awareness video  https://m.youtube.com/watch?v=sM27ewIDtnI. Just have to have faith that somway things will all workout!-Chelle 

Thursday, June 9, 2016

I had it all mapped out

This song is what keeps me going so many times more. Truly this song is my mantra. I'm starving and hurting and tired. That's it I am living off Pedialyte and Being ignored by my gi. Harder to contact than he president, apparently! I keep thinking patience is a virtue, because that's true. This song speaks near and dear to my heart. 
had it all mapped out in front of me
Knew just where I wanted to go
But life decided to change my plans
And I found a mountain in the middle of my road
I knew there was no way to move it
So I searched for a way around
Broken-hearted I started climbing
And at the top I found

Every fear, every doubt, all the pain I went through
Was the price that I paid to see this view
Now that I'm here I would never trade
The grace that I feel and the faith that I find
Through the bittersweet tears and the sleepless nights
I used to pray He'd take it all away
But instead it became
A beautiful heartbreak

I never dreamed my heart would make it
And I thought about turning around
But Heaven has shown me miracles
I never would have seen from the ground
Now I take the rain with the sunshine
Cause there's one thing that I know
He picks up the pieces
Along each broken road

Every fear, every doubt, all the pain I went through
Was the price that I paid to see this view
Now that I'm here I would never trade
The grace that I feel and the faith that I find
Through the bittersweet tears and the sleepless nights
I used to pray He'd take it all away
But instead it became
A beautiful heartbreak  

This song is so beautifully put and sang by Hilary Weeks. She has a beautiful video to it too here's the link http://m.youtube.com/watch?v=xyX-I-um5Kklyrics by http://www.lyricsfreak.com/h/hilary+weeks/beautiful+heartbreak_20987321.html

Wednesday, June 8, 2016

Tuesday 6/7/16

I ended up in the er in Sun City last night thinking for sure my tube had coiled or malfunctioned. My feeds have been 20-25ml per hour with big rests in between for two weeks now. And the night before last, I started taking medications that were being pushed through my jejunal tube and then burning in my stomach along with it. To me clearly the meds were going into my stomach some how. But my tube looks good via x Ray and I was sent home to decompress tummy (open my g tube (the one that goes into my stomach) and hook it up to a draining bag so it can vent air and drain contents of bile or foods. Which is helping and I grossly drained cheese from 24plus hours after eating it. Eww! Welcome to Gastroparesis where your gi system won't digest the things you eat. I am now on NO formula just pedialyte. And my mom went to get Popsicles and jello  which with being hooked up to a drain bag will practically go in and straight out into the bag. So yeah no nutrition is my biggest concern (well and hacking my guts up for hours and massive pain despite taking high doses of everything medically possible for my stomach) again welcome to Gastroparesis. It's a game sometimes a game that frightens me. But I can't change it so I've been praying. When I got to the er (after a late appointment due to doc being late, then the extra hour drive to that particular hospy, then the getting lost because a main road is closed we finally got to the er! They were empty yay ...but a nurse flipped out on my and refused to use my port due to me being the one who accesses it... I told her i had been trained and have even had surgery with my own accessed ports (but she couldn't prove it was sterile) despite the fact that I do it sterile always and am anal about it and wear a top of the line bio patch all which the lines team said and signed it off.( even if a home health nurse did it she still could not have proved that it was don't perfectly) I had to wait like an hour for any meds due to this and the whole time a wretched and wretched I'm pretty sure I have injuries and lots of blood vessels are mad all over my body.  Which only made my migraine worse. I am irritated I get punished for being amazing and taking over my care. I have no choice but to do my own port care and if they re-did my port that would have been an added infection risk. I prayed during that long time waiting for a lines team and she was an angel sent to me! Seriously! She was so kind and was like, "this is perfect I don't know why they would refuse this port." She knew I knew what I was doing and she signed off to use my port instead of adding an infection risk and I am just so grateful for her simple kindness towards me. And when they sent me home I cried (not because I was being sent home) but because my tube was fine and I've been so sick and to learn oh it's not an easy fix its my body. I broke down. I'm hungry and tired and I got home at 1:30am (well in Mesa where we stay) but though my tears came of fear and frustration I used my faith some more and prayed and I has the sweetest discharge nurse who was simply gentle and kind and I was like I promise I'm not upset about going home at all I was just tired of hurting and sick of being sick . It's hard. But those pain meds didn't help the second dose just threw me into depression. Pain meds are wonderful for me at times in small doses like for my migraines that are so out of control. Or my endometriosis pain. But those stronger ones make me sad. Because my diseases all effect each other and pain is a domino effect for me it throws me into a pots flare and so now we have to try our hardest to keep this body calm and not stay or go into stressful situations physically. My kidney doctor is upping my meds and we are cutting back on the amount of Iv fluids (hopefully in half) and my potassium is low from the meds she has me on. So I now will be getting potassium, magnesium, normal saline ivs. It's a roller coaster ride my life. I hang on and keep going letting my faith guide the way. And I never give up even when I cry like I'm two. I cancelled my urology testing. This body can't handle it right now. So will be rescheduling. For now our focus is tummy control and feeds(nutrition)-Chelle 

Monday, June 6, 2016

Doctor day 1

St. Joseph's Hospital Phx.

Today I saw my favorite Dr. Anita Desai (pelvic pain specialist/surgeon) she is so awesome and takes good care of me. We made a plan for surgery and we are going to do surgery July 26th for removal of my Endometriosis. Which will get rid of these toxic adhesions that grow inside me and on/around my organs. Then I will recover and be returning back to pelvic physical therapy. It was nice being at St. Joes though, it always has a homely feel to it )I don't know if it is because I love my doctors there or if it's because I was born premie there and lived there for a few months) but I'm always like calm there. Then we visited another old stomping ground from our old pelvic trauma fixing days and went to Melrose pharmacy to get my speciality meds. Then we saw a new rheumatologist to see if we could once and for all figure out if I really have Sj√∂gren's syndrome or not. He voted not but was unsure and is running a Panel of labs to check. We knew I'd need surgery again in the future for Endometriosis years ago when I had my last. That's the hard part of Endometriosis you can only truly take care of it by surgery. We also knew pelvic floor issues are something I will deal with as well. I'm just thankful for the tools and lovely caregivers in my life to help me get better. Even when we have to walk the path over and over again. -Chelle 

Saturday, June 4, 2016

Medical Record Emotions

As I dug through these medical records I haven't looked at in years, (needed a diagnostic test to take to new rheumatologist) this is only two years worth of medical records of just my own...

it automatically came over me, the feeling that I have been so far. I have walked a very long path. I had to make books of my own medical records with my own two hands filled with tests, doctor's visits, procedures, surgeries, medication lists, therapies, symptom diaries, food diaries. I carefully put them all together by date so they would be easy access for any doctor to look at. Not knowing that they'd be just shoved back at me rudely as soon as they caught eye of them. But I kept going with hope in my heart of finding out what was wrong with this body. The days were long and hard but my Heavenly Father was always with me giving me guidance and I was never alone. I may have gone down a long agonizing path but I also completed the pathway. So it's okay I fell but I got back up and never quit. Did I get the answers I wanted a cure? No. I did get a diagnosis though and a better treatment plan. And a much stronger testimony in God, Heavenly Father, the Holy Ghost, the church, and the real important things in this life. 

Friday, June 3, 2016

This too shall pack

That meteor falling from the sky two mornings ago did wake me but I just assumed it was a neighbor making noise. My Dad panicked because he thought my Iv pole fell on me. Hahah but anyways I am packing my bags once again! I should be a professional at this point! Well I actually thing I am. Organizations is key. And lists. Three separate lists. And double check them because even after all that you are bound to have everything but the kitchen sink except for a really important item (hmmm like last week Michelle) the Iv pump! Whoops!! That would have been bad but it was a day trip. Speaking of packing I got a brand NEW feed backpack by Zevex infinity pump or moog.  https://m.youtube.com/watch?v=QqMKX6lpWBU  My feeds are at 20ml per hour still. Weight is and will be lost. But I'm holding my own. So that's not good. Just trying to wait it out and see where it takes me. My Endometriosis is hurting badly despite me not having enough nutrition support to produce a cycle. My Lichen Planus is flared. And my specialist has been out of office all week (looks like I'm going back on my immune suppression medication) I also have pelvic floor tension myalgia going on. Which all three is so painful. I have been super addictive to this song by Sinclair. It's called "This to Shall Pass " 
 Bad times come with chronic illness but we just have to take a deep breath and remember how much purpose we have on this earth! And that God loves us so much he is allowing us to hurt so we can grow stronger than ever before. But the darkest of days will pass even the dark days that cluster into months, the sun will shine again and the birds will sing their sweet tunes and we will know that those hard times have passed-Chelle   

Wednesday, June 1, 2016

What I Know Today

As the day went by yesterday I felt better. But when I woke up this morning I ground my pills, got a new syringe ready, grabbed my liquid phenegran, which is anti nausea (took it first) holy cow! My body was not ok with that it hit very fast and made me so sick for a good 20 minutes  or so. But it passes mostly I am still very nauseated (ironic my nausea medicine worsens my nausea (temporarily)?) I just barely got all my morning meds in. Hopefully now I can feel better because I am lethargic and my head hurts, well really everything hurts. My gastroparesis is probably right now worse than yesterday. My feeds are still at 20ml. I have some allergies but will have to wait until my body calms down to take anything for that. But through all this after  I literally picked myself up off the floor holding back my gags back in fear of throwing up my oral medication I had previously taken. I crawled into bed and said a small prayer "heavenly Father I need you to help me through this" and I hear a "you are okay" "it's going to all be okay" I have been doubting my big life plan of everything working out or being okay and it's been toxic for me. And I really am working on that.  So hearing those words filled my heart with hope and gladness I really needed that reassurance. I cried my happy spirit tears and felt so relieved!  I have been distant from my Heavenly Father. More then I would like to admit. And I've been really fighting to read those scriptures daily and to pray. But I know how truly important those acts of building our relationship  with God is! So I keep fighting. And though while I was so sickly in my bed This morning, I knew he wasn't going to take my pain away. So I did not ask.  But I knew he would be there with me giving me the patience and comfort I needed. Cheering me along. And he did. And I have great peace in my heart. I know some of us don't get healed for a reason. And in my opinion, it is so we can learn and grow as individuals due to the trials that come with being chronically ill our close family and friends learn things too.if we all lived in a perfect world how would we learn anything about free agency or the plan of salvation? Would we have that desire to go to Heaven if we lived in an already perfect world with perfect lifes? And what about growing towards eternal goals? we came here to get our bodies agreeing to the terms of the struggles we all face in life. Trials are like parents discipline (they are not fun and sometimes hard to go through, we might miss out on a party while washing the windows instead  but we will be taught our lesson) God loves us all and our loving Heavenly Father as well! That I can promise and if you can't feel them remind yourself through faith that they are there for you. Cling to what you do know and cling to the teachings of the lord read you scriptures and pray build up your relationship. We never walk alone in this life.-Chelle