Sunday, August 7, 2016

8-7-16

This is a photo from the day before surgery (post surgery I have looked like a hobo) and i think the face sums up how I have been feeling... #seriously #thinking #iamkindasickofthis 
I hope everyone is having a good sabbath day! I haven't been up to posting and I may be posting a bit less in the near future. But I wanted to write an update while I feel up to it... I am fine... But sometimes I need what I call a "medical  break" luckily I have until the end of the month to go to post ops, clearance appointments, neurology, and then I am suppose to restart physical therapy. Basically I will be going to the valley more for more treatments. There is no time frame for therapy it all depends on my body and how it responds. Once a trauma case always a trauma case. However it's not nearly as bad as before. (It shouldn't be with treatments and monitoring) but for now I am taking a medical break for me. That doesn't mean I won't be taking my meds or using tubes or any of those things. Those aren't choices...it just means less doctors and procedures for at least the next month. (Fingers crossed, it's not exactly in my control) I will probably blog I want to... Sometimes I have to step back and take a breath. This summer was tough. My feeding tube had a hole so it would back up and my feeds got very low... This didn't show in x rays. My GI was flooded with cases (he is getting help in September), my tube then fell out at home so I had to pull it (doc instructions) which means my stoma had to be recut, I got a new tube but my feeds were low for so long that it caused refeeding syndrome and I basically had to restart my feed rates from scratch. Once I got to an okay amount of nutrients and felt a bit human that way... I caught a really crappy week long virus, I was well for a week then went in for endometriosis excision removal. (My neuro and I did have a big talk if the surgery would be worth it or not with my POTS... He said do it because pain makes my POTS worse and if I kept living in so much pain my POTS was not going to improve. In fact it could drag it down further...Plus it is not okay to let one disease run rapid just because you have another disease.) Mean while I also suffered from daily migraines that they couldn't control. We found a med that works and honestly the odd part is when the monsoons came they improved on their own. (Normally the monsoons kill me and I have them the worst during those times) I still have them once in a while but not so badly. I had a hiccup post surgery not exactly related to the surgery and I will be totally fine but I need some time to heal. I just need a Michelle break. So that's what I am doing. Obviously I can't stop it all and just take a vacation from it (that would be nice though haha) but yeah a little less chaos would be appreciated. I am even putting my feeding tube replacement off until September (unless it clogs or breaks or something). So for now my goal is to get back on my feet and take a break. My main focus is now nutritional as I am eating a bit more by mouth. (Not loosing my tube by Any means)  my biggest goal would be to get my feeding rate high enough and (a seperate situation to make my kidneys more efficient so I only would need 1 liter of fluids per day.) but it effects my nutrition...  Right now I can not get formula and hydration (why I have the port) but my hopes and dreams today are to get that rate up with my new formula to where I feed 4 times a day and run fluids via feeding tube in my sleep... That may be a dream but I am feeling a stubborness that's stronger than normal. Which is a good sign of a good fight but I will take any improvements. I realize I can not control my diseases but This girl tries super hard everyday! These improvements can always change in the blink of an eye. But for now I will push the GI tract a bit and sees where  it takes me. It's a lot of learning dietary (I know some from the beginning before I was tube fed and I was eating baby food to try to not get a feeding tube but I failed these Gaatroparesis diets even the full liquid ones)... But a point to make as even if I ate 100% it's a very different diet. I will always need nutritional support with Gastroparesis. But I will be happy to eat at all. Because there was a a day I could not even have a sip of water. When I slowly improved with eating by mouth I was afraid people would think I didn't need a feeding tube. (I can see the confusion there. I myself thought before Tubie life that a feeding tube meant you wouldn't be able to eat at all only by a tube... And some can not eat a bite of anything or a sip... But here is some feeding tube awareness some can eat a little and that's great! It's all nutritional needs.)  I have a new perspective this week. I have been very blessed these past few weeks and though it's been extremely hard. I feel I have been trialed to the max. I have learned a few things from them. Like I always say trials bring life's biggest blessings. Always stay strong, keep pushing, reach for the stars, never give up, & know how much love our Savior has for you! I'm so tired today and I will be slowly getting back on my toes again. Keep up your fight whatever it is. You have great purpose!!-Chelle