Saturday, January 8, 2011

Hanging in There

Well, it's been kind of a long road since we arrived home from Germany. After a very long, very scary drive home in a blizzard from the airport, we finally made it home. Our driveway was covered in about 10 inches of snow and Jake decided to try and gun it into the garage and got immediately stuck. Haha it was awesome. We spent the next hour trying to dig out but we couldn't go back or forward. Luckily all four kids slept through the whole thing. After a while, a really kind neighbor came and rescued us with the super powerful snow plow from the church building. We FINALLY stepped into our home, so excited to have made it, jet lagged and absolutely exhausted, walked in the door and the smell of dog urine and poop hit us like a ton of bricks. Jake had built a barricade around our dog Eddie's doggie door with his blanket and food, so that he could go out and go potty whenever he needed to and the neighbor was walking him twice a day and keeping him fed. But he got out of his barricade and apparently had spent the past 10 days roaming the house all by himself and marking his territory all over the place. We've had the carpet cleaners come 3 times so far and there are still areas that smell. It's been awful. My fear is that we're just going to get used to the smell and think it's gone, and then have THAT house in the neighborhood that reeks and nobody will tell us!!! Thankfully I know a few people that will give me brutally honest feedback about the smell of my house:)
As far as the MS goes, the symptoms have not gone away since I've been home. Actually, the dizziness has been quite a bit better, but other things have been worse. Yesterday, I felt like I was falling twice when I was just standing there. And the pain has been pretty bad. By yesterday, I could no longer move my neck without intense pain. Jake finally forced me to go to the chiropractor who said that it was really swollen and a huge jumble of knots. The adjustment was unbelievably painful but today it feels quite a bit better. I can move it right but still can't really move it left. The joints in my fingers are throbbing as I type this, and I feel like my memory, word recall, etc. are definitely struggling. Before we left Germany, I was having a really difficult time with the thought of coming home to all of my responsibilities and obligations, and inevitable upcoming surgeries for my sweet little boy Chandler. Over and over, my neurologist has told me that I need to work at cutting my stress level at least in half, but I've never really paid much attention to it, figuring it was impossible. But after a long and emotional conversation with my sweetheart, we decided that we really do need to make the effort to cut out what we can. I know that stress is one of the greatest exacerbators of this disease, and there are plenty of stressors in my life that I cannot change, but I've decided that I need to start cutting out some of the things that I can if I want to be the healthiest I can for my family, and have the best chance of raising my children into adulthood. One of the first things that I decided I needed to cut back on was my calling at church. For those of you who are not LDS, a calling is a volunteer responsibility you take on for the church. I have been working with the teenage girls in our church and have loved every minute of it. But there is no denying that planning and attending weekly activities, going to biweekly meetings, teaching on Sundays, etc., causes more stress, even if it's something I enjoy. It was extremely difficult for me to swallow my pride and tell the Young Women's president my situation, but I finally worked up the courage, and of course, she was very understanding and compassionate about it. I worry that not having a calling right now will bring upon me the judgments of others. As much as we pretend like it's not, in the culture we live in, having a calling is like a status symbol, and giving it up causes people to make all kinds of assumptions about you. Especially with a quiet disease like this, where I appear perfectly normal, it is difficult to have anyone understand what it's like in my world. I know that I've got to just let go of worrying about that nonsense, and do what's best for me and my family, but for some reason, that's easier said than done.
I've also decided to stop home-making all of our bread. It doesn't seem like much, but every few days, it's a 3 hour time commitment. And instead of cutting my boys hair the other day, I took them to Great Clips. I know it's not much but I'm trying.
One of my biggest worries is disappointing people about the procedure for CCSVI. I know that a lot of people have looked to my situation for hope with their struggle with MS, and it breaks my heart to think that I might be letting people down. Let me just say that, although I am having symptoms again, I still feel better than I ever did before the surgery. I wouldn't change it for the world, and I would encourage anyone and everyone who has this disease to get your veins looked at. Now that the dr. is part of a national trial, I think it's ok to share his information with you on this open forum. The dr. in Provo who is performing these procedures is Dr. Hatch, and his phone number is 801-379-6700. He is wonderful. I am truly grateful that I've been able to have my veins opened and my blood flowing normally again, and it has helped me so much. I literally had 5 months with NO symptoms! That time was invaluable, and I will forever be grateful for it.
As difficult as it is to watch my little boy go through these surgeries (these next two will be number 17 and 18), I am so thankful to live in this great country, and to be so close to Primary Children's Medical Center, an amazing hospital that has always been so great to Chandler. I recognize that we are so truly blessed to have modern medicine and procedures that can improve my little boy's quality of life so drastically.
I am thankful to have my four sweet children. Of course it is sometimes difficult to be a mother of four small children, but they are the greatest blessing I could ever ask for, and they constantly provide so much depth of love and joy in the lives of my husband and me.
I am grateful for my sweet husband, who is always trying to think of ways to make my life easier. He truly is my best friend, and I love him dearly.
I am grateful to have a knowledge of my Savior, Jesus Christ, and to know without a doubt that He understands my pains, has experienced them, and can provide comfort to me when it seems that nothing else can. I know that God is aware of little insignificant me, that He knows my sweet little boy, that He has a plan for our family.
My dear friend, Larry Steimle, shared this video with me, and I shared it with Chandler. Chan was blown away at this little boy, and after he watched it, we talked about how blessed we are even when we have to go through difficult things. Chandler and he are about the same age, and he was surprised to find out that this little guy just lives 90 minutes away from us. He immediately said, "I want to meet him!! Can I meet him?!" I'll see what I can do:)

PS If you're interested in finding out more about my faith, you can visit and have your questions answered, or feel free to email me with any questions:)


  1. You may already know everything I am going to tell you, but I thought I would mention them just in case.
    Is this time corresponding with you stopping taking Plavix? I felt a return of my symptoms for a couple days afterward, but am feeling better now. Also a lot of people online are taking low dose aspirin everyday. Dr. Black thought that was a good idea. Though there are no studies of it improving vein health, it stands to reason that thinner blood flows better. Restenosis is always a possibility, too, especially with the jugular veins. He told me to call him if my symptoms, especial fatigue, return.
    It sounds like you have had more than your share of stress recently, I hope the changes you are making will help. Prairie Grain Bread Co. is the bread I buy from Walmart that only has stone ground whole wheat, yeast, water and honey. Costco sells a good brand too.
    I hope your son's surgery goes well and I hope you feel better soon.

  2. Toby, I'm sorry you've been having such a hard time! Please do call me if there's anything I can do -- I'm so close by! And don't worry about people judging you. Anyone who knows you would never dream of it, and anyone who judges without knowing you? Well, that is their burden to bear.

    Your "attitude of gratitude" is such an inspiration to me. Love you!

  3. You're such an amazing person. I agree with Tomiannie- don't worry about people judging you. I hope I am able to go to Vegas to see you in June!

  4. So sorry to hear you haven't been feeling well, and that your house stinks! (sometimes I wonder if mine still does and I've just gotten used to it).

    I just needed to put in my two cents about the calling thing. Nobody has any business judging you for not having one, read 1 Samuel 16:7. I think most members of the LDS church understand this and would not think less of you. Here's one more scripture that goes along with your testimony, I'm sure you're familiar with it but I'll post it for anyone else interested: Alma 7:10-12 here's a link for those w/out a Book of Mormon

  5. Oh man. When Jeff told us about your guys' dog trouble, I thought, "Whew! I'm glad we have a cat!" Then a few days later we got home and got slapped in the face with yuck, too. We had forgotten to unlock the kitty door after we loaded up the car, so for 10 days she went all over the kitchen and dining room.

    Hope you get to feeling better soon and Chandler's surgery goes well!