Saturday, April 29, 2017
No help. A lot of judgement because though I was clearly sick and I had a fever as well, that would not break... But all the tests were fine. I was sick and I was afraid. The healthcare system definelty failed me Multiple times at this point! This picture I hate looking at because I remember it! And I just don't look well... one Year Later...YESTERDAY my GI was on cloud 9 and He is very amazed with my improvements over the past 6 months. It's truly miraculous and I do look so much better! The whole office buzzed lol (I've never been seen with makeup nor hair there. Just emergencies/hospitalizations and surgeries) I am keeping the CURRENT tube I have in. (GJ) due to wisdom teeth issues. Oh yes they have attacked me and I'm getting them out ASAP but of course I have to do it in hospital and it's complicated to get set up! And my Endometrosis needs more weeks to attempt to improve with treatments. Surgery can't fix it all anymore it's now complex & I get to fight it again with treatments. So in the event that the current tube comes out because it's way past its life expectancy and can fall apart (like last year remember that?) in that case he has given me 2 Mic Key Gastric tubes that I will replace at home on my own and I will go to a G tube. Then we will see what time brings and he thinks I will be tubeless in time but also thinks we don't want ANY set backs like moving too fast and agreed as much as he said he wanted to just yank the current tube, I (pit of excitement) I did need a tube to bumper my nutrition still. So to sum this up I will be going to A straight Gastric tube AKA stomach tube. So we are loosing the small intestine tube that bypassed the stomach completely. Truly major blessing here. I am SO grateful and blessed! IT ALSO MEANS NO MORE RISKY SURGERY FOR ME every few months 😊 (J tubes have to be done under surgery because they have to be guided into the small intestine.) so no tube surgery, which will only allow my body to become stronger and it will be less risks for my Dysautonomia to flare severely. (Andy type of surgery, sickness, pain will cause a flare that could be permanent and put me back in bed daily like I have been for the past years. But I have a strong faith though I won't be cured, I will be so much better and functional. That's what God told me that's what I will remember. I know that doesn't mean I will be perfectly fine. I just had a little flare up last night but I'm feeling better today. I also know better and my specialist how my body works in my case and how to help it win. Faith not Fears)
Friday, April 21, 2017
I've had a long day of appointments... (It's that time again ten hundred specialists to see) But I still got to laugh at this sign! "Healing is in the air." I stood there for a minute just to make sure! Lol Only at a Hospital will You find such a sign! P.S don't smoke! It's bad for You! No no!
Monday, April 17, 2017
Wednesday, April 12, 2017
What,You can not do tricks while typing?
Thursday, March 30, 2017
Today was rough around the edges but by looking at me you would never have known. I had painsomnia last night and probably fell asleep finally around 2 am. I woke up as late as possible this morning knowing I had a full afternoon. My Endometrosis/Adenomyosis pain level is high. Too high. (I hate those pain charts. In a scale of one to ten they ask... My responses to these questions are normally 50 or 100) but I wanted to get dressed and do my hair and feel semi human despite the pain. So I did it. I was going to hurt no matter what I did today. I also could not take any pain meds because I had to drive and obviously you can't do both... So I trudged through! I went and had my labs drawn out of my port.
We smile and give thumbs up when we get needles in our chest 👍 Gotta check those electrolyte levels with these POTSie kidneys I own... I then trudged forward to Walmart (cover my eyes) I hate going to Walmart. It's always busy... I park Handicapped and there is always someone who has something to say about it! (I can hear you talking ever so purposefully loud two steps behind me. No, I am not lazy, nor am I borrowing someone else's handicap sticker) Or they just glare at me... I get that I don't look sick... I truly do but in all honesty We hate being the center of a judge mental skeptical! Younge people get sick too. Most disabitlies are considered to be invisible disabilities which means, You can not tell by looking at the person. That person looks fine on the outside. But I had to get Orgain! And it's the only place I can find it... And I basically live off it. So to Walmart in between appointments I went.
Thursday, March 23, 2017
Though its snowy and rainy today the past few weeks have been gorgeous! And this girl has been tolerating the heat! )you guys I couldn't even walk from the car into a building without getting heatstroke the past two years due to Dysautonomia! (Praying it lasts and I can enjoy the sunshine again like I used to) here are some of my good days away week 💕 I am so appreciative MY good days! The days I never thought I'd see again in this lifetime!! I am so blessed beyond measure...