Should update

I haven't posted in a bit and decided I should probabaly do an update. Things went up after my plasma exchange and then idk if my endometriosis knocked me down or what but I went from dancing around for the first time in a year to back in bed most days. I want to ephacise I am SO much better still! I really am basically just worn out and I keep getting headaches that we've always blamed on the IVIG. (Now my brain is not on fire the tall tale symptom of my autoimmune encephalitis.) Idk why I'm getting bad headaches. When you have 11 chronic conditions it gets a little blurry. So we have proceeded with IVIG ahaim.after a 3 week break. It was super rough on me. I got the side effects. We think its because when they do a plasma exchange they remove all your antibodies and IVIG floods you with donors antibodies... therefore it was like my first dose of ivig all over again. But my sweet hubby took good care of me the whole time. He made me soup and when I felt a but better later some popcorn with lots or butter and salt. To soak up that big IV I get lol.

He has been so helpful this past month with helping and

cooking dinners when I can't. Thankfully he knows how to dance in the rain. It is in some of the worst moments that he makes me laugh somehow and I realize we really were made for each other. I truly love him. He is my best friend and makes life worth living.
If things don't improve rapidly with this body of mine we will go back to the drawing board and tweak.

Today I'm putting my new feeding tube in and I'm so relieved my old one is so icky and I always worry it will fall out because its flat worn out.

Tummy isn't as happy these days. Gastroparesis is more obvious.  I am really focused on better nutrition and I am doing a lot of liquid meal replacments. You know my favorite all organic healing (not a bunch of chemicals) meal replacement drink is Orgain. GPers I have had a lot of the meal supplements and orgain doesn't make me sicker it makes me heal. Its at Walmart in the food section. I seemed to developed a small bowel blockage. We did find out in December, not only are my small Intestines and stomach paralyzed, but my bowels are as well. (This is why you do a full gastric emptying study if you're getting a GES do at least a 12 hour. You want to get a full picture of what's going on. It's all connected. You wouldn't go to the eye doctor and do an eye exam and glasses on just one eye. This is good info because now I know I am at risk for bowel obstructions and blocks so I can try avoid them with treatments and diets.)

 I am weaning off some of the meds my brain needed after all.the trauma earlier this year and time is going by... and I'm happy to announce that for the 1st time since steroids I have lost weight on the scale! My hair quit falling out in clumps. All this past week. It's so relieving! They told me I have as a result of heavy steroid use, that I have Cushings Syndrome for at least the next 9 months. Its been so hard mentally. I just morphed into a whole different person within two weeks. I'll keep those photos to myself for personal reasons but it is truly unbelievable what steroids can do to a body. I follow the truth 369 an awareness for childhood cancer. I don't know why besides I know how important awareness is... not just for things I have but for all things especially childhood ones! over the years I've seen photos of sweet little looking so puffy from the steroids and I now know how miserable it is and my heart just aches more for these babes! I pray hard for them all! If there is anything I've learned this year is never judge someone else for anything. We simply don't know what or why someone is in a circumstance they may be in. There is so much we doing know. We should merely walk in Christ's love. It's hard I know when you're busy out and about and people can be cranky or rude.... but don't let someone else negative take away your bright and goodness. I'm talking to myself when I say this but we should all strive to soften our hearts in today's horrid world we live. That's what this blog is it's notall awareness and updates. It is about spreading light in a dark world. The only light of our heavenly father. Its contagious.  Just keep doing the best you can do and know ththe savior will walk  besides you.-Chelle