Wednesday, November 16, 2016

MS Insight? Bring it On!

Thank you thank you for all of your sweet comments yesterday as well as all of your prayers. I'm SO blessed to have SO many people in my life. People who show concern. People who are there for me. People who pray for us. God knows our future and I already can see so many ways in which he's been preparing us for this new journey. Part of that preparation was surrounding me with such an incredible support system.

Emotionally I'm ALL OVER THE PLACE. One moment I feel like "Oh yeah we got this" then the next I feel like "omg I can't handle any of this at all ever."

It's very, very overwhelming (something those of you who know me know I don't do well with!) and there is just SO MUCH TO LEARN. And so much to digest. Our lives are never going to be what they were on Sunday. From here on out it's like a whole new start for us. And that's scary and it's just a LOT. I don't know how else to put it other than "it's a lot."

I was happy with our lives. I had found that balance of where I felt like I was doing the best for my husband and children that I could do and I was very at peace with that balance. Now it's all out of whack and I have to figure out that NEW balance. I have to reprioritize our lives and change my daily focus. With me being the one doing the brunt of the research I also have to be the one to share what I find with Zach and be the one to tell him the changes we'll all have to make in our daily lives. I hate being that messenger!

I wanted to write this quick post (in a break from my MS research!) to add to what I posted yesterday. I know in previous posts I mentioned that I wasn't ready to hear about personal experiences with MS. Now that it's our reality, bring it on. Not having to navigate these waters alone will be so helpful to us and hearing the good, the bad, the reality of this disease will benefit us in so many ways.

If you know someone with MS and they'd be willing to share any insight please have them contact me. (emailing me at journeyofphood@gmail.com is best!) I'm pretty bombarded with messages right now (such a blessing!) but I promise it will get read eventually! ;)

Not only would I love to know their personal experience but also their plans of action: meds, lifestyle changes, etc. And of course if there are recommended specialists I'd love to know that too!

If you have any insight into diet that would also be great. We are already decently healthy people but this is an area we want to get serious about as it's shown so many ways to benefit life with a chronic disease and since environmental factors play a role in MS, it will also help our children.

The diet stuff is pretty overwhelming b/c it's such a "trendy" topic right now. Any suggestions that help keep it simple for us would be wonderful!

The whole "environmental factor" thing is such a crap shoot. I'd kinda rather them just say it's hereditary. B/c then I wouldn't worry about what things in my children's daily lives could be potentially causing them to have MS. Or what things in our daily lives could make Zach's worse. Environmental Factors are stinking EVERYTHING. Food. Bath products. Lotions. Cleaning Products. Sunscreens. Etc etc etc. I know I can't let it consume me but it's difficult when everywhere I read one thing I then read two more things saying something different. It's just a lot. (Have I said that already? Because it's true. It's a LOT). And I'd love just to say "forget it" and NOT WORRY about it all but I can't because it truly will make a difference in my husband's quality of life.

I'm a person who doesn't function well when my plate is too full. Right now it's over-filled. I want to make sure we do everything for Zach's health. I want to make sure I'm as healthy as I can be to be able to take care of his needs down the road. I want to make sure to give my children the best shot possible at not someday facing similar news that we're experiencing. I feel like there is a lot of weight on my shoulders right now and I keep getting bombarded with more info than I can even understand. Some of it knocks me off my feet b/c it's so terrifying and then other parts are comforting because maybe life won't be so different after all.

Keep on praying for us. Today has been a tough day for me as it's really the first time I've started digging into research on the topic. I'm thankful our dr gave us two LEGIT sites to start with as Google is just straight dangerous. I know it's okay to be OK and it's okay to be upset. I don't even know right now exactly how to describe how I feel. I feel disbelief and then I want to throw up and then I want to break something and then I just sob. This is just all not what I ever expected our lives would have to be. And that's a really, really tough reality to take in for me. I have faith that we will be okay but the reality is that our lives ARE changed and WILL be changed and that we have to figure out what our new normal will be.

Any insight as we travel this new path would be so appreciated! Of course we are still praying for that miracle (I did read that most MS patients go through a TON of time and testing and episodes before being diagnosed so if this IS MS then we're really ahead of the game already and SO blessed with such a great dr to catch it like he has!) and praying that his symptoms and diagnosis are as little-life changing as possible!

To end on a more positive note I did hear from both CAC as well as our home study case worker. Both said they see NO REASON why we cannot continue in our adoption process and to simply get a letter from his dr stating that he's fit to parent to add to our home study file. We don't feel pressure to decide anything right now (we had already planned to be on break for a bit anyway!) and we know that having such a diagnosis may make finding a birth mother a little tougher but we are just going to keep having faith and seeking God's guidance in all aspects our of lives. We see so many blessings ALREADY and we've only had this diagnosis for 48 hours...we are eager to see God reveal Himself more to us throughout the many days ahead!


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