Things have been long and hard...I have traveled safely home, but I have not been able to call myself "stable", but I wish that I could.
I came home I think a week or a little less than a week ago...I'm don't remember exactly what day I came. Boston was very productive, definitely a God-sent trip...everything worked out perfectly, and I even got to stop by and see two of my friends, both named Taylor. :)
Ultimately, we got what we went there for...answers. I did the manometry testing. We found out my stomach is still dead, and my colon is dead. My small intestine is still good, which is great. We also found out that I definitely have a diagnosis of mitochondrial disease after seeing the mito specialist for six hours. It was wonderful, really. He even identified this severe pain that I was having after replacing my GJ tube that has stumped so many doctors as "very common in mito patients". It made me feel better...not so alone. He also put together my family history and found out my mother has it too. She has a lot of the same symptoms that I do...and my brother quite possibly could have a form of mito, too, based on his thriving, or should I say, failure to thrive as a baby and his health struggles to this day, too. :/ I don't want my family to have this awful disease...but it really does give us a bright light on what's going on. It's not just my immediate family...this stuff traces back to my mom's mom and all my family's health problems...AND dad, his severe digestive issues and chronic ulcers when he was alive and his sister that is in a wheelchair, too, like me cause of muscle problems and weakness that was never able to be identified along with digestive issues... it all makes sense, even though I wish that we didn't have to have this.
We're gonna start me on one medicine called Amitiza for my colon, see if anything miraculous happens...if it doesn't work, we're gonna have my colon removed... :/ I have mixed feelings about this. I don't want to have it removed, but it's literally doing nothing...it's just sitting there and not doing any work at all whatsoever. Oh yeah, well it's causing me pain and misery and causing me to get impacted. I haven't gone to the bathroom in about two weeks. Sigh...I don't know when we will try Amitiza, but I haven't heard any good reviews on it. I've heard it's got nasty side effects like headaches and diarrhea and cramping...I HATE that. I don't want to go back to diarrhea symptoms, oh man, that was horrid..I'm not saying it will happen to me, but just to have a chance of having those symptoms again makes my stomach go into a knot..also going to have me started on either an upped dose on my muscle medicine Neurontin or new medicine to help me based on findings on an EEG that I'd rather not talk about at this time, but my brain is basically 24/7 in a state of pre-seizure waves with other findings. Just a lot to digest for me, or not digest in my case... haha, sick humor. :P Oh, and I also gained a few pounds, even if I know it's because I haven't gone to the bathroom in two weeks..ahh, I don't care! I like feeling something on my body.
Anyways, we're also looking into getting a wheelchair van cause based on recommendations by my mito specialist and some buddies we've decided it's going to be best if we get me a power chair instead of a manual wheelchair...it's going to help me preserve energy a lot better than a manual wheelchair. Hopefully we can get me started on a light physical therapy program as well... everything should fall in place soon. TPN has also been decided it's going to be a long term thing as much as I don't want to, it's what's keeping me alive right now and kinda sorta out of the hospital...
And through this all, it makes me happy knowing that I have people who support me and people who are willing to lend a shoulder to cry on. Oh, and before I go, I wanted to let you all know that this week is awareness week for the diseases that have taken away my ability to eat without vomiting or getting super sick, and severe pain with trying to go to the bathroom: Gastroparesis and pseudo-obstruction. Even hearing their name makes me smoke a little. Ugh. Anyways, I wanted to spread awareness cause not many people know that these things exist...it makes me upset cause even though it is SO horrible and the symptoms cause serious things like eating through feeding tubes and central lines though doctors don't even know about it!! For awareness week there are awareness pictures that I'm going to reproduce so everyone is nice and aware about this disease and it's woes that come with having it. Note to GP and CIP: I HATE YOU!!
Thanks guys, hoping everything is well for everyone, and hoping that this fall brings forth better days for all of you, whatever the circumstances you are fighting in your life....lots of love and hugs.