Thursday, April 28, 2016

Signs

When you're driving down the road asking God and the Angels for help with something, and they send your number sign a minute later...


Sunday, April 24, 2016

Fatigue

I've been exhausted for a while now. I'm not sure when it started, but in the last few months it's gotten really bad. In the evenings I come home and sit down and can't seem to make myself do anything. I sleep all weekend. I want to do fun things with my family and friends, but I have to decline because I'm just so darn tired. My kids ask, "why are you always sleeping? Come play with me." That's the hardest. I feel like I'm letting my family down.
Another autism mom suggested a functional medicine doctor who could look at biomedical causes for me, rather than ignoring my complaints like the four endocrinologists I've seen. This new doc ran all kinds of tests and prescribed all kinds of things, including a new supplement regimen, infrared saunas, detox supports, dry brushing, an auto-immune diet, exercise, and removing the cause of the problem, if possible.
The problem? Biotoxin illness. My blood tests show that something is making me sick. It could be mold. Lyme disease. Bacteria. We are still trying to figure that out.
Moving is likely. Getting rid of a majority (or all??) of my possessions is a possibility. Cleaning and packing are necessary but also problematic, as they can make me worse. Luckily it's a beautiful day today, so the house is airing out and the sun is lifting my spirits.
I sometimes feel like every time I get a break and things start to get better, I get thrown another doozy. Kid with autism? I got this. 
They left him on the bus? At least he's ok. I got this. 
Car accident sent you into early labor? Bedrest, I got this. 
Husband cheated? Better off without him anyway. 
Rylie has constant diarrhea for months? MAPS doctor and dietitian fixed it. 
Horrible apartment with no hot water, swarm of ants and broken washer? Parents helped. 
Not enough money to move? Brothers helped.
Can't afford movers? Friends helped.
Wallet and phone stolen? Parents helped. 
The school retaliated against you when you tried to advocate for your child? Lawyer and advocates fixed that. 
Hayden might have PANDAS? Learning, gonna fix this. 
Starting to pay off debts and then the doctor explains that you need tons of medical testing, treatment, have to move and possibly buy all new belongings? Um.... Sigh.... I got this? Deep breaths. I can do it. I think I can do this. 
But getting rid of personal possessions is hard! What about my paintings, like the one above? Childhood scrapbooks? Biomed books? Air filters are expensive! I've maxed out my Care Credit. How will I buy all new stuff?
And I've plunged into a whole new world of biomed research. What are biotoxins? How can I heal? How do the recommended supplements interfere or work with my genetic mutations? What is c4a, HLA, CIRS, MSH, TGF-b1?
If you pray, or send virtual hugs or intentions, or whatever good vibes you can send us right now, please do so! Thankfully I have Joseph who has been here for me every step of the way, and Crystal and Maria online who are helping me learn. I found a doctor who ran the right tests, and found out why I'm so tired.
It's emotionally exhausting. But I'm working toward better health and will do what I need to to feel better for my family. When I'm lost and confused and don't know what to do next, I write. Some things have to wait until later, for political reasons. But this I can write about now. And for that I am grateful.
I feel like most of my life experiences have been there to teach me something. I've always become stronger as a result. What am I meant to learn this time? That it's ok to let go? Not to get complacent? I'm feeling frustrated and disappointed. Shouldn't I have built up more karma than this? ; )
Crystal sent me this image, so I'm going to try and use it for inspiration. 
It's ok. I will keep going. I've got this.



Update, 9/19/16: ERMI testing indicated the house was fine! I am so grateful to my doctor, family and friends for all of their support during this difficult time. Life is good!

Tuesday, April 12, 2016

Just a typical evening

Scene: Joe and I are in the kitchen. The kids are supposed to be upstairs getting ready for bed. 

Joe: What do you think Hayden's doing?
Me: sitting in his underwear and reading Garfield. 

Rylie: (yelling down the stairs) MOM!! 
Me: Yes?
Rylie: IS IT SHORT SLEEVES OR LONG SLEEVES TOMORROW?
Joe: Let me look. It says cold in the morning and warm in the afternoon. So medium sleeves.
Rylie: What does that even MEAN? 
Me: Short sleeves! 
Ry: But Joe said long sleeves AND short sleeves. 
Me: short sleeves. 
Ry: that doesn't make SENSE! Does he want me to wear both? 
Me: short sleeves. 
Ry: MOM!!   I need your help. 
Joe: (turns on vacuum) CANT HEAR YOU, VACUUMING! 
Rylie: (inaudible) 
Us: cracking up 
Joe: (turns off vacuum)
Rylie: MOM I still need your help! 
Me: what is it? 
Rylie: I can't find my pineapple shirt. 
Me: (now upstairs) It's in the dryer. 
Rylie: but when will it be done? 
Me: Tomorrow. 

(check on Hayden, who is in his underwear reading Garfield) 

Me: Did you brush your teeth and go to the bathroom?
H: yes
Me: are you lying? 
H: No. 
R: When will my pineapple shirt be ready? 
Me: tomorrow. 
Joe: go get ready if you want a story. 

Ry: (goes to bathroom and shuts door)
Joe: are you writing all this down? 
Me: yes. do you think she's actually getting ready? 
Joe: I don't know. It's a toss up. 
Rylie: (opens door) I heard that. 

Rylie: when will my pineapple shirt be ready? 
Joe: you better hurry up if you want a story. 
Rylie: I think Hayden's lying about brushing his teeth. 
H: I am not!  Rylie don't take my sleeping bag! 
(As Rylie drags his sleeping bag into her room.)

Our family is ridiculous. I love it.

Sunday, April 10, 2016

3rd Biomed Conference Was A Success

Thank you to all the speakers, vendors, and volunteers at the 3rd Biomedical Interventions for Autism Conference yesterday. Without you this day would not have been possible.
Special thanks to my volunteers who were there all day to help bring autism resources to local families.