Human again

I'm human again! Praying and fingers are crossed u stay this way!! No Tylenol today and no fever all day long!!! First day of that! I still have the sniffles but I am much better. I even picked up my messy room (I came home from our trip sick so I didn't unpack) and I don't hair have clothes and makeup and that stuff... I have feeding supplies, port supplies, Iv supplies, medications, the list seems endless. I also had a delivery of my week supply of Iv stuff I didn't touch I always put it all away but I was too ill. And I got my delivery of ivs and port supplies this morning. Yesterday came all my feeding supplies. I have gotten it all put away! I have been washing my bedding and Lysoling everything in this house! My weight is down I have lost my muscles but I am determined to push through the next few weeks and get back to life again. 

New vlog 7-11-16

Uploaded a new vlog: https://youtu.be/0zwaE0d3Fg4

Sometimes chronically ill makes doctors have tunnel vision

So yesterday I woke with a sore throat. I thought, "oh great I have strep." Took benedryl, morning meds, along with nausea meds. An hour later I took some pain med and all went super south. Bottom line I was inscrautiating pain all day long. Especially in my spine a and a migraine .... Dysautonomia. We made it to the ER and they filled my of high powered meds. But they didn't listen to what I was telling them. I felt feverish. My pain never got in control. I was actually just worsening with time and left in pain. I came home, hooked to IVs because my potassium was a little low. Had a blessing and tried to tough out the night. I still can't believe how crazy yesterday was it is all a blur of pain. Out of control pain too. In my spine, stomach ribs, migraines, but what I found funny after my mom called and they said to bring me back was that. They gave me simpler meds and basically got nausea and fever to break. Swabbed for strep. Then did imagining. Seriously! If all doctors did that I'd be in such better shape ignore the big beastly disease to a point and go over the obvious thing first then add in diseases. That's all it took was a little time with the right treatment. They decided a very strange virus of some sort (especially with all the in and outs of hospitals I do) and of course my Gastroparesis and POTS will flare when I get regular sick ( cold,flu, infection, Ect)  we got home at four a.m. And I crashed woke up fever feeling and flu aches but I am fever free for now. Blessings do work. And yes my doctor and nurse last night was a blessing! Hoping this passes soon-Chelle 

Heavy Laden.

Today was a HARD day. I did not feel good. At one point I had thought I had failed the day. I not only had a 7a.m. pre op appointment followed by a three hour long (unknown until the day before) hospital appointment where they basically do what they normally do in pre op right before surgery... labs, medication lists, ect. So I suffered through all of that. pushed through to end up with probably the worst migraine in my life! Now remember I have been having a migraine daily. So for me to say I had the worst migraine in my life, it was pretty horrible. normally a half dose of pain meds takes it mostly away. I have been trialing like a thousand different migraine medications. Well nothing helped me today. I spent hours riving in complete horrid pain. Out of control pain. After hours of this I finally gave up. I begged and pleaded with the Lord to help me. In any way possible. I didn't care what happened as long as I could handle it again. So I literally was in so much pain I thought, " I am dying, this is going to kill me." followed by my next thought, "awe man, no. nope. I won't die from this I never die from all the millions of other times I thought I would be toast." "No you always come through Michelle." and at that point I was kinda like oh boy hold on the ride is just getting started. I had cried out. I had began at that point sobbing and praying. That was all I had left in my tool bag my medications and remedies had totally failed me. And there was no way I was even considering going to the ER. So you know how serious this statement right there is... So I dug down deep in my bag of faith. And I thought doubt at first. I thought you said a prayer hours ago... we are at this point now, ten times worse. But I thought, "Oh No. I am not going to go there." So I prayed, I prayed for Anything to help me. I didn't care what form. What way. Anything. As I am praying and wagering with God. I simply heard "Be Still My Soul" play through my head. And I was like "ah ha!" that meant something. I feel like my soul needs to be still." So before I knew it that song was not just going through my thoughts. I was humming it. and feeling some pretty good relief of my pain that was way out of control. "hey I am on to something here." Then the next thing I know as I am praying not only do I feel the total Love and Peace from Heaven that at that time I know filled my whole room not just my heart and soul. I was singing at that point. I had gone to crying and clenching and total craziness with a dose of chaos, to complete stillness and peace. and no pain. All that pain and stress both mental and physically my body was going through was gone within minutes. Replaced with complete spiritual blessings of healing. Then I thought of Matthew 11:28 "Come unto me, all ye that labour and are heavy laden, and I will give you rest." This is so true and my testimony has been so boosted of this tonight. I pray a lot for healing and I don't always get what I want, when I want it. Sometimes I will laugh when someone tells me I will be better soon... but at the end of the day I know one thing. That God has portrayed to me with time.... and this is not me loosing faith nor giving up in any way. I know I will not be cured in this lifetime. I might get better, well I have had improvements and I am thankful and hope for more. But at the end of the day I know God's plan for me includes being chronically ill. Sometimes that a tough spoonful to swallow. Some days I think, "why am I even here? Seriously!" I feel like a burden to others. I feel I have not much to offer. But I remind myself we all are here for a reason. We ALL have a plan eternal and divine. We are here to be tested, and trialed. We live life to grow. To be molded. We have to pass the test despite all our earthy situations. And we all have them. So this is where being super sick all the time is totally and completely just "unfair" we live in pain. We live with symptoms. We dream of life without them. We wish them away. Times come where we literally would do anything to help our sufferings that have gone bonkers. BUT my biggest most amazing testimonies of The Church of Jesus Christ of Latter day Saints and the plan of salvation.... that God does exist along with a loving Jesus Christ. That knowledge comes from hard labour and experiences from the sickest longest worst days of my life. Sometimes we have to break to see things, to allow us experience to change and grow. Sometimes that is a wonderful time full of lovely things. But we are put through the hard times to help us. That's just how it works. Those are the times when butterflies break out of their cocoons and fly high. So the next time you are in and impossible situation in life. Pray first. If you don't succeed keep in mind the above Bible verse that is told to us many a times. Pray he is there, speak he is listening. you are his child. -Chelle .... after I had this experience of course I knew it needed to be shared... So while using Google to find the exact references without flaw I came across this Talk by Dallin H. Oaks in 2006 from General Conference. https://www.lds.org/general-conference/2006/10/he-heals-the-heavy-laden?lang=eng&_r=1

Cardiac clearance and update 6/7/16

Well I received my cardiac clearance for surgery (I never doubted that I would get it) the cardiologist did not suit me. He was rude and knew of POTS but just enough to make him ignorant. Anyways, I have learned to just let them talk answer when you have to and "get through" the appointment. I don't aprecciate those appointments. All I want to do is leave. But it needed done and it's one more thing checked off my list. I am not feeling so good and I have been in a lot of pain especially yesterday my pain meds didn't even take care of it. But I know this pain came at the right time. It made it so clear how much I do need this surgery and putting it off would be foolish to my POTS because pain makes POTS angry which then causes a domino effect of many symptoms. Plus if I am in pain my Endo is growing enough to cause the pains... I am going to have to fall backwards these next couple months to fall forwards. Endometriosis find a new house to live in my organs don't need you there. Sorry not sorry. Haha (we will be excising lesions of Endometriosis and taking biopsies to check for micro endometriosis growing which I have it grows all over in places and can't be seen! Also will be trying the Skyla. That makes me most nervous because I have so many issues on hormones of any sorts. I simply don't tolerate them the Norman ways. Fingers crossed this will be my helper to keep my endo at bay...tomorrow will be an early appointment with Dr. Desai my surgeon and then I have some weirdo hospitalitst visit for pre surgery that they do now. They are suppose to go over med lists and histories and draw labs and all that. (the stuff they normally do while you wait for surgery. I'm curious to see what repeats happen on surgery day. I'm just skeptical) this heat is melting my brain literally my slurring my speech at times. My thoughts are jumbled, and I'm pretty tired out. And those darn kidneys kinda are mad. Yes heat apparently is effecting my kidneys through my POTS. Feeds are low but higher. And I will have them up for surgery the 26th. Getting nervous, not so much of the surgery itself but what my body will do because of it...also still trying to get neuro and kidney specialist to talk to each other I am suppose to be weening down to one liter fluids a night instead of two and upping fluocortisone... Making my symptoms even more better then they have been with this treatment (if you aren't filled in) kidney doc found out my kidneys produce too much urine and are kicking out my sodium (an essential electrolyte). So I was literally dehydrating myself. So they'd up my fluids for blood volume all of this is POTS but it was only adding fuel to the fire. So hopefully sometime soon we can fix this!! It's driving me bananas. Just call each other! (Which I know they do because she told me they do) because my neuro isn't getting I need one separate liter normal saline with all the potassium and mag in it (so I will no matter what get those essential electrolytes) and then a whole different bag of one liter of just plain normal salien . He keeps putting it all in one big two liter bag. I need two seperate one liter bags. Bless this mess, lots of love-Chelle 

Happy Fourth

May you all be in joy of your Fourth of July 2016!! May God bless our Country daily! Xo-Chelle 

Happy to have a Flawed Tube

So as I have spoken, written, and verbally  complained about my newest feeding tube and how much "I hate it" (which it is very flawed in design) and I have spent my last while in clothes that are covered in sticky medication and formula... At some point every day...And not to mention my house! Though it is not in fact the and I quote "Fancy Pants tube" as my doctor calls it. And I quote, "that his youngest patient needs to be able to go to the beach in her bikini because she has a life to live" (I don't exactly know why my caring & compassionate slightly goofy accented GI says that exact quote every  time we change tubes) I mean we live in AZ there is no beach, sure I could vacation... But that's not the reason haha It's silly. But in his defense I am like literally the only patient that's not old haha but he understands the fact that I am young and have a life to live!   but he comes in and we laugh and we joke because "having a feeding tube is not the end of the world." That was the first thing he ever said to me. We had to agree on one thing to continue treatment And I agreed then, I knew that before then... And maybe he is tired from being overloaded and working until midnight and coming in early every morning leaving his family behind to help people like me. And as a result he did not have my "fancy pants tube". We have to order it and wait. And I have been unhappy mostly frustrated, because I had a tube I literally loved, not because it was low profile tube. Because it had all the bells and whistles. And now I don't have all those amenities. The amenities I had grown very accustomed to. Over the  past 8 months. And low profiles are way more comfortable they are lighter and the extension tubing sways with movement. They don't kink in your sleep and set your alarms off! It is like taking a fork away now you am have a spoon and a knife only. I used my old tube so much it fell out from being worn out. And it had a hole in the j portion from wear and tear! in the last month I was not able to feed at a normal rate  and becoming malnourished due to that hole in it!! That leak wouldn't show up in x rays...so it was a blessing it came out. I wouldn't have gotten any better with it. (they only have like I think a 4 month "lifespan") but since getting the new tube... I mean I have just been ready to get rid of this bulky, stupid, annoying, problem causing  tube. Since day 1. (I had to have something I couldn't have no tube)  I am going to go back to get my button tube back, when the hospy gets it in ( I kinda actually need to go back and change out tubes for a button because I am at a high risk of throwing this tube up. It happened within a month or so the last few times. It stopped after we found the low profile tube. It has a special clamp and  is extra weighted at the end to keep it in place. So with this new horrible tube  I am more worried about when it's going coil like the rest of them prior to my "fancy pants tube" I really have been feeling just irritated about living with this many of times called "stupid tube" I am sick of not getting my medicine in me because it comes back out... Leaving me not knowing how much to replace because I'm covered in it and the floor, counter, or car... I mean day two of tube we were in the valley and it had literally detached from my feeds and I was feeding my pants and when we got to the store I was like oh no! Nobody likes being fed on it's gross! Yes it is just formula but have you smelt formula lol...and rudely waking up in a puddle of it is not any more fun... And the old tube never did that once! Not for one second have I been even the slightest bit grateful to have this new  tube...as I am sure you can see reading this.... but I opened my laptop this morning and I looked down and I saw this tube & one thing crossed my mind "how lucky am I to have this very tube to sustain me life?" I mean you can see from the picture nothing special here. Just a tube and a laptop.

How has it not even crossed my mind for weeks that without this tube (that I hated so much and fixated all my thoughts about it so negatively.) I couldn't even appreciate it's value? It holds a pretty big value too! I would be dying? Literally starving to death without it. Too many Gastroparesis Warriors die weekly from Gastroparesis. They literally starve to death. Because their bodies reject feeds. They quit absorbing, even TPN or have too many complications to have any type of feeding tube. I had let myself forget that I almost died because my motility specialist refused to do anything but a few Ivs at Iv therapy a week. At my last appointment there I cried and begged that (keep in mind motility specialist. A motility specialist specializes in Gastroparesis (slow gastric emptying or rapid gastric emptying I am unsure if rapid has another name))  this doctor was so busy being "the guru" she totally missed the boat with me. Luckily I had a good nutritionist there who did give me some good info. She also warned me if I could not complete a liquid diet and soon I would be in need of a feeding tube up my nose. I couldn't keep a sip or a bite of food down. Despite my begging, that motility specialist turned me down on even running some labs to see if I was really doing "okay" without eating for about three months. I was so mad! I remember the whole way home I just was crying and I just remember feeling so strongly that I wasn't okay.  I saw my pcp ASAP and she listened (she was new I did not have much faith in a pcp at that point they really liked to tell me I was just crazy or depressed) not this one. She listened. She made a plan. She too knew I was not okay without eating. She immediately started me on TPN I had a picc line placed the next morning and I started TPN that day. (She ran labs the night before so she would know what I needed in that TPN) now the TPN was suppose to be a quick fix and just to keep me stable until I could find a GI to take over... Well I did my TPN and I came back in two weeks. She did not tell me or call me to tell me the result of the lab work she ran. She waited until my appointment two weeks later because she knew (by doing weekly labs and that she already has put me on TPN. Which is nutrition through your blood stream. It literally feeds your organs and nothing goes through any of your gi tract) but by  then I was ok again and stable. She revealed my body had started shutting down. I was literally dying. Her listening to me and believing in me. Then taking  a stand that wasn't hers to take but doing it anyways saved my life. Out of over thirty GI offices contacted... One GI took me. I had found my help!! Little did I know I was going to literally be asked,  "if I was crazy" then he would say that was what was wrong with me. I was on TPN and almost died because I was in fact crazy? And it was stupid to be on TPN when I could have a traditional feeding tube (using my GI tract) well that was our goal??? He said he would do a gj tube but After the appointment almost immediately, my Mother and I decided there was no way he was touching me. The search continued and a friend found this amazing interventional Endoscopist and he would be willing to put my tube in. I first had to go through my pcp and have nasal-Jejunal tubes (for insurance purposes to prove it would work) I had three NJ tubes in three weeks and my picc line (how I was getting TPN ended up ending pulled due to a blood clot around it in the vein) luckily days later I had surgery scheduled for a gj tube placement. My feeds have never reached goal. But they do keep me nourished properly and I gained some weight and for the most part my weight is stable a wonderful sign. Fast forward to today...Here I am on j tube feeds and though my situation currently is not perfect. And I did not gain a feeding rate to both feed and properly hydrate myself especially with POTS where we need extra to keep our blood volume normal.  I now use a port for fluids. (I am having the best next treatment to eating) I am off TPN.  I am okay. I am getting my nutrition today. I am absorbing my medications.  I'm pretty lucky to have been blessed with Jejunal  tube feeding and even to have this flawed tube. Because as you now know they are not easy to get. I went through a lot to get a gj tube... I can eat a little now. I can vent and not be as sick and sometimes eat a little more by mouth due to draining my g tube. I lost prospective. I forgot the war I fought to get where I am. I totally failed to see that my flawed new tube was better then none. I'm so blessed! Because without it I am sure I'd be a lot worse then frustrated... I've been being unappreciative to this tube. But for now I am eating! I am living! I am getting my medicine though it may not be perfectly receiving meds. I am getting them for the most part... Count your many blessings every single day! Even if you're feeling a little blind from tunnel vision-Chelle