gjtube

#LiPix it’s #gastroparesisawarenessmonth and I have designed a few shirts for us to wear and represent and show our awareness!!! The warrior shirt has the “keep calm ” on the front the others are writing on front only they are priced affordable and go to a great cause!!! Show your support fm for link but I will add here too … http://teespring.com/stores/gastroparesis-awareness. I really hope you all like there are many Coord and styles #tees #tanks #womenfittedtees #sweater 💚💪🏻 #gastroparesis #gastroparesisawareness #support #thecause #getyours #awareness #awesome #spoonie #chronicallyfabulous #chronicillness #spoonie4life #dysautonomia #gj #gjtube #feedingtube #starvingforacure #starving4acure

~Insomnia has been bad lately. I guess it’s one of the perks of a successful set of iron infusions. I have been anemic for years..now I’m not thanks to Feraheme.~I also realized that the successful iron infusions fixing my anemia contributed to my kidneys going into failure these past few weeks. I really struggle with hydration and really only drink coffee and occasionally diet coke…bad I know–both diuretics. Buttttt, when I was anemic, I had crazy ice cravings and would eat cups and cups of ice cubes all day and night. Hydration. Welllll, now that I don’t have pagophagia from the anemia, I don’t eat ice. So now I realize kinda what the hell happened. I realized yesterday and now that my kidneys are functioning again thanks to crazy amounts of fluids waking them back up when I was on an IV for 2.5 weeks, I am now making sure I drink a lot of water to keep them working. ~But yeah…I miss not having to worry about insomnia because I physically couldn’t stay awake. It’s like bittersweet. I also am feeling like I could be heading towards a manic episode? I’ve noticed some of that weirdness coming on..but I still feel depressed so I’m not sure what it is. I just know that I am really awake and have that weird mental clarity feeling and have been having some psychotic thoughts but I’m not like bouncing off the walls and excited feeling like I usually get. So I don’t know what this is. ~My stomach has been BAD. Like extra bad. I can’t do any solids and even taking liquid supplements I have to take extremely slowly in small amounts or I vomit. So yeah the Reglan isn’t helping. I’m going to make an appointment with my GI for this week so we can talk about getting the G/J tube (ugh) and/or a port for TPN. My body is in too fragile a place right now to wait around and get more malnourished while we figure out if insurance will approve me getting a gastric neurostimulator trial.

Successful Doctor Day

SOOOOO, saw my nutrition GI and GI surgeon today. Had to get my J tube pulled. 1. Feeds were failing badly and 2. she took the dressing off and since you know, lupus and mass steroids=shitty healing, the incision had opened up a lot. So she was like…"this thing is gone.bye.“ Pulled it right there. Wasn’t painful at all, just laughably gross. Getting a GJ placed, as I have the G tube anyways. So, that’s actually getting done tomorrow. I’m hoping I can get a button tube instead of the long one again. We’re only going to use the J for meds right now, and the G for venting. No feeds for awhile since i’ve failed like 5 formulas. She recommended home IV fluids for my POTS and home IV meds, and definitely TPN despite the far she hates TPN with a passion. The pyloroplasty healed nicely, though. 

THEN, I saw my nutrition GI. He specifically manages my nutrition stuff for my gastroparesis. He’s hilarious as my rheum is, and also as tiny and energetic. He agreed TPN needs to be started ASAP. Agreed to handle the IV fluids unless Dr.K(my rheum) wants to, AND I could shit for joy over this, get me IV meds for home to use since I have a Hickman for everything else. IV Benadryl for my nausea, and hopefully zofran and whatever else they’ll approve that would be helpful for me to get IV. Tomorrow, I see my rheum and get my new GJ put in in IR at 2pm. May or may not get admitted to start TPN afterwards. We might do that whole process at home if my home health nurses are willing to do all the leg work to get all that bloodwork and stuff you need the first few days of TPN to figure out the fine details. So, yes. Good day overall. No spoons left, though.

5

I like to do photo updates. Just more interesting. TPN supplies weekly make me have to organize, otherwise it’s a mess…so there’s my creation. When I can drive safely again, i’m going to decorate it more.

I kind of like this whole eating while sleeping thing. Pretty easy, and way easier than tube feeds. Just more dangerous. 

Getting’ CRAZY on my mass amounts of IV zofran. They sent me too little last week, so sent more this week. And my doc is getting around the system, by prescribing things in weird doses so I can get more, but they aren’t picking up on it. Props to you, Dr.V. Dr.K does the same thing. Those are 2 docs that care about their patients.

As you can see, i’m super popular with my family taking over all the room in the fridge. You can tell what’s mine. TPN, meds, and Jello. And TPN bags are mad heavy. Not easy to adjust. Also not happy i’m getting lipids in my mine every day. TPN is bloating me to a serious degree, from the fluid retention.

Hooked up from all ends. Getting up to pee with all of that was fun. By 1am I said fuck it and only stayed hooked up to TPN.


Just once again very, very tired and wondering how much more I can take. CYtoxan approval process should be started and approved soon. This’ll be my 3rd round in 3 years, except longer. Sigh. Still too weak to drive and do much on my own. Was supposed to just go shoot the shit with my rabbi, because she’s a great lady and just nice to talk to, but I had to cancel because I couldn’t safely leave the house. 

In happy news, I got a WAY more in gift cards to my salon than I expected…like I can get my shaved sidecut I want, plus bleaching and dying it purple or pink, and a facial or something. ANd I got a lot in sephora cards, since I haven’t bought nice/new makeup every since I got really sick. Was really nice of people. I also have a potential date coming up, but I have to search for SOMETHING somewhere to wear, because i’m retaining fluid like crazy and cute stuff is hard to come by. Found some stuff from Modcloth I might order. Expensive, yes, but this is the first time anyones asked me out in about 3 years.

Now mine I really hope this helps me out and get me back out in the world I want to experience everything with my daughter and son and sports are coming up and etc and I like to go go go but lyme says no no no well me chair who needs a name is gonna tell lyme to screw tou this lady will love her life!!!! And love it good!!!’ #positivity #lymedisease #love #lymie #lymedisease #lymefighter #babesia#gj #gjtube #gastroparesis #feedingtube #fibromyalgia #chronicpain #cfs #chroniclyme #chronicallyfabulous #spoonie #spoonie4life #readytogo