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I PROMISE this blog isn’t going to turn into “The Journey of MS” OR “Emily’s Daily Emotions.” I have a regular way-behind-on-real-life post planned to go up tomorrow, I promise 😉
But. We got some big, game-changer type news and this is my place to work through emotions. I just deal best through writing. AND when I wrote about Zach’s Results I wrote it from a perspective of someone who knew NOTHING about MS at ALL. Now I know a little more and understand a little better and want to share some of that knowledge here. Not just for myself to have a record of but also for those who do want to know what’s going on and how to specifically pray.
Yesterday I was the hottest of hot messes I’ve probably ever been. I have had some pretty epic breakdowns in my time but yesterday was def above and beyond. I felt so bad because the kids got home and Zach got home and I just kept on crying! It’s like I literally couldn’t make the tears stop and every little thing would make me cry.
My goal for today was NO TEARS. Well. That lasted about 30 minutes after I woke up 😉 I know tears will come. I know it’ll take time for them to stop coming as often. I was very, very negative town yesterday. I felt bombarded with all this info. Good, bad, in-between. I felt confused and just unable to process everything I was learning. I’ve now read and responded to every text, inbox message and email (I think!) and have gained so much insight from so many of you! Just another way God has prepared us for this!!!
Here is a super cliff notes version of MS for those of you who were like I was 3 days ago and don’t know a thing about it:
- MS is a disease with a natural tendency to remit spontaneously, for which there is no universally effective treatment (Yes, that’s one of those “omg I’m gonna cry now” statements)
- MOST people with MS never need a wheelchair. (Which can I go ahead and say that it TICKS ME OFF that every single picture on every website discussing MS shows people in wheelchairs!?)
- MOST people with MS are MILDLY affected by the symptoms. The most common of which are: muscle weakness in extremities, difficulty in coordination/balance, numbness/prickling sensations, speech impediments, tremors, dizziness, depression, difficulty with concentration/attention/memory
Zach has only had ONE episode. And his was mild being that it was vision related. From what I’ve read MOST people who get diagnosed with MS have to have several episodes and usually go to several drs before finally finding out they have it. This means four things for us:
- Zach may not even get an official diagnosis. From what I can tell they don’t consider it MS until you have at least 2 relapses (episodes).
- Zach is actually considered to have Clinically Isolated Syndrome. The exact thing that happened to Zach is the example they use to actually describe it (only one relapse, it was his vision AND it was only ONE spot on his brain that was affected).
- We are SUPER blessed with an AMAZING dr who got us to this conclusion so quickly! Even if he is officially diagnosed we are super mega ahead of the game.
- Because Zach has only had one relapse and because his symptoms went away fully and didn’t cause any permanent damage…it’s pretty safe to assume that if he is diagnosed with MS that it will be the most mild form. It’s also the most common which means it has the most research and the most options for treatment.
Even though it’s a life-long disease and even though there is no cure and not even a universally effective treatment, there is still a TON of things WE CAN DO. I love that. I love that we have some control in this. I love that we can alter things in our lives that will directly affect Zach’s quality of life. We love Survivor and always talk about how we don’t get how people could be cast for the show and NOT learn how to build a stinking fire!!! We are in a very early stage of this process but you better bet we are going to be fire building pros 🙂 When reading about those things it was overwhelming at first but I feel a lot better about it now and like it’s all a lot more do-able. Here are the controllables:
- Exercise: It’s important for Zach to stretch and to exercise daily. We are active people and just bought a new elliptical and Zach has some great yoga dvds to help his back strength that he can do.
- Sleep: Rest is important. We already get close to 8 hours each night but we can always improve! Y’all know I’ve always been hardcore on sleep in this house so that’s gonna be an easy one 😉
- Diet: There is no special “MS Diet” but it’s recommended to follow the government guidelines for healthy eating. (you can review those here). A super sweet blog reader sent me a link to this site called 100 Days of Real Food. It’s a REAL family just focusing on healthier eating. There are TONS of recipes and their budget for their diet is less than we spend monthly on groceries anyway so it’s totally DO ABLE. And the recipes sound like we’ll legit enjoy them too! Another sweet friend sent me info on Dirt Road Organics which is a super affordable way to get locally grown foods!
- Vitamins: A ton of research is being done with Vitamin D and MS. I had already been making sure the kids got a lot of Vit D b/c there are findings it helps prevent auto-immune diseases as a whole. We should also make sure Zach is taking Omega 3s and Calcium. We’ve both been using Advocare products for several years now so adding in things to our normal routine won’t be a big deal at all!
- Financial: I have NEVER been so thankful for our Dave Ramsey lifestyle! Zach is the breadwinner. Not only does that cause him stress (which isn’t good for anyone, especially someone with MS) but it also puts us in a tough spot if he does get to a point where he’s unable to work as much/long/hard as he currently does. This is a huge motivator for us to get even smarter with our spending. Budget better. Save a lot more. And just really prioritize what we want to spend on (TRAVEL is our #1!). If we cut back on spending we’ll be able to put aside more into our savings/mutual funds and be in an even better spot financially down the road. We know treatment plans etc will cost us money as well so we want to make sure we have funds to get the best treatments available.
- Heat: The biggest thing I’ve read with MS is avoiding heat. Kinda hard to do in South Georgia right?!?! This is a scarier one for us. I’ve even heard of people moving because of it. Zach actually has a lower natural body temp which is common among people with MS and is part of the reason why the heat affects them so badly. This is something we will discuss a lot with drs when the time comes but there are a lot of ways to stay cool and still be active. We will get a fan to use while he’s working out at home, cooling agents for when he’s golfing. All very do-able and things that having a hardcore planner wife will really be helpful 😉
- Stress: Stress plays a big role in how Zach will feel. As his wife I want to do all I can to minimize his stress as much as possible. It’s tough because his job is pretty stressful a lot of the times. But this is where prayer comes in and where proper saving financially can take that load off of his shoulders!
- Our Attitude: Yes, I’ve been upset the past 24 hours but a BIG controllable in this is our attitude and outlook moving forward. Zach has had an AWESOME attitude. Like dude has been positive from the first moment we found out. He’s confident and has that “we’ll beat this” mentality which is so awesome. He’s also been AMAZING with me. When I’m upset he’s comforting me (I know, shouldn’t it be the other way around here?!?!) and he’s told me point blank that he is ALL IN. Whatever meds are best, he’ll take em. Whatever life changes we gotta make, he’ll make ’em. And that is just SO HUGE!
A lot of things have given me comfort in this. So many of your kind words, scriptures, songs. Especially hearing about others who have MS and live their lives! One friend commented and said “you will be able to do everything you already do, you will just do it differently.” And I love that! I think that’s so important for us. A friend has reached out whose brother has MS and who is 8-10 years in and no one would guess he has it. Y’all this is such a God thing because MS is mostly common among women. And while I appreciate ALL the insight from everyone, for Zach to be able to talk to a fellow man with it will be huge for him and especially someone who sounds like he has the same outlook that Zach does. I’m eager to learn more from personal experiences of others as I know those are more telling than any website research!
The biggest game changer for my overall outlook has been this article. I don’t expect everyone to read it but basically it says that since Zach has only had one relapse he technically doesn’t have MS and instead has that “clinically isolated syndrome.” And that a big study has been done over 11 years on early treatment for MS after the first relapse. By us going ahead and getting treatment started NOW we have a decent shot at delaying the official diagnosis of MS and delaying future relapse episodes. Y’all. THIS IS HUGE. I’d love for anyone with specific prayer desires to pray about this study and that Zach ends up being one of the people who go 1888 days or more before his next relapse! Heck maybe we can go all out and just say he gets his treatments, we control the controllables and he just never has another relapse at all and just goes along with this clinically isolated syndrome forever (it’s possible yall!!!).
While I’m not excited about making all these changes. I’m surely not “counting it all joy” yet or anything like that. I am eager to see both the ways in which God has prepared us for this battle AND how He will guide us through it and use it to glorify Him. And honestly pretty much all those controllables are things we should ALL be doing in our daily lives anyway! Sleeping better? Eating better? Exercising? Budgeting? We are just blessed with such a big kick in our butts to get where we should be across the board to live healthier, longer, happier lives 🙂
Already I see in SO MANY ways how prepared He’s made us for this. Dave Ramsey. Advocare (I will get 40% off on all those vitamins!). The insight from people through the blog. We may not feel ready for this battle but we are prepared to fight it.
In regards to the adoption, I have loved the prayers so many of you are saying on our behalf in it. Several people have talked to me about their “outsider view” and just how CLEAR it is to them that Satan is attacking us because God has big plans. I agree. Right now throwing adopting a baby into all of this mix is scary. But who does fear come from? Not the Lord yall! I’m thankful we are already on a break and that we aren’t already matched as we do have time to digest everything and rework our plan before Tab becomes part of our family. I know that IF Zach is diagnosed with MS that it may mean a longer road before we’re chosen by a birth mother and that’s okay. We are patient and know God’s timing and plan is BEST!
I love the motto that many people use for MS. It’s “Keep Moving Forward.” That’s what we will do. We will keep moving forward (sidenote that it’s also a common Disney motto too haha) and keep Stepping Out in Faith. Not just with our adoption plans, but in all aspects of life!
So yesterday was rough. But today, today is hopeful. I am beyond in love with my husband. Seeing his strength and positivity is so inspiring for me. I think he is more confident in my love for him than he’s ever been too because I wouldn’t be crying this much if I wasn’t pretty much obsessed with him 😉 We may have gotten some tough to swallow news and we may have to make adjustments to our daily lives and long term plans but we still have the most important things that life can offer!
Truly, thank you all again for the prayers and for just being there. It sounds cheesy but you are my family. You provide me comfort and remind me of my own strength when I feel like I don’t have any left.
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