Wednesday, August 17, 2016

8-17-16

Today I had an early appointment, not my kind of appointments... I like time to get my symptoms under control the best I can...so of course makeup doesn't matter and I was like oh yeah my hat and the big news is I can now have a baby pony tail again!! How lovely is that???!! I looked like a billboard for America so I guess it's good that I'm American lol I also wore my Stars and stripes t shirt because I'm sorry but I spent money on it... It shall be worn more than once! Just saying! I looked like a hobo anyways so now I am just a brightly dressed hobo (wink)! But I am still having decent days knock on wood! Tomorrow is my only non appointment day! I fully intend to rest and prepare for my travels to see neuro and I should probably make a list (what a drag) My feeding pump is broken and won't stay shut without tape.
So this is what I rigged up Hahahah it's a folded in half medical mask...(to protect the screen and buttons)  And clear medical tape to keep it shut! (The little clicker part that holds the tubing that goes into the pump gas a click shut system the clicker part isn't staying clicked... If that is not clicked a.k.a shut my pump won't do a thing but beep)...(I am living up to my Woolford family expectations! Duck tape and WD40 fixes everything haha inside family joke!) no I didn't put ducktape on my feeding pump just clear medical tape! so also working on getting a pump exchange tomorrow! Just found out my coordinator is no longer working there any more (big frowns) I've been using her from the begging of Tubie feeds. My heart is actually sad. (I hate loosing good helpers) These home health pharmacy coordinators can be horrid or awsome and they are the ones you speak to for everything! Like if I need anything fixed or my orders I go through that same person for everything... but for real why wouldn't they shut off her answering machine or switch it to another extension???. They don't even have a replacement yet... I am getting another inifinity pump tomorrow (fingers crossed it works well.... The last thing I need when my feeds are so well is a bad pump to mess them up)... Are you guys sure it's not Monday??? Because it really is feeling like it is a Monday! Now if I could get my rheumatology lab results??? Maybe??
Every POTSie has a special stash of sodium with them... These are sodium chloride tablets but if I have a POTS attack I would need some of these and fluids... To replenish my electrolytes and help build my blood volume back up! I noticed they weren't in my purse...(I did not even think about it, which looking back not so smart) I did not need them I just was like hmm where did my sodium go? I never thought a thought of it again... Well I just found them in my feed backpack (which makes more since it's always with me too and it's where all my food is... And syringes and such)! Some days there is sooo much stuff too keep track of you find things you didn't even realize you lost haha! I want to end my post of today on a good note. So here is a big positive! My stoma is healing... It's not totally healed but a lot less bleeding and my chunk of scar tissue that was visual is going down quite a bit! So neosporin and a lot of TLC really did help (the outside) plus it's not so tender and hurting badly!! And as I was just thinking yay my stoma is healing... I was playing with my stud earrings I have been wearing. And I was like oh earnings are like stomas (so basically I am just so darn cool I have a pierced stomach (they should like bedazzle feeding tubes. Totally kidding!) but I now will never think of ratings the same again! (Funny how medical changes life's out looks?)  Hope you had a happy Wed-Nes-day (anyone else still have to do that to spell Wednesday?? Hmm??)
Xo!-Chelle