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Mastocytosis Recovery Month 7 Day 15

05.13.14

movement

Today is day two of a lowered dose of steroids. I have significant swelling of the face, lip and throat. Day two is always worse for me until my body gets used to the new dose. Although I do not feel my best, I am thankful to be able to be moving forward. Getting off the steroids all together is the goal, which is something I have not been able to do for 7 1/2 months. There are lots of side effects and other complications that come from being on them long-term. My battle with Mastocytosis is ongoing but there is movement. Today I feel like I am living the lyrics of one of my favorite songs by Mercy Me.

“Move”

I’m not about to give up
Because I heard you say
There’s gonna be brighter days
There’s gonna be brighter days
I won’t stop, I’ll keep my head up
No, I’m not here to stay
There’s gonna be brighter days
There’s gonna be brighter days

I just might bend but I won’t break
As long as I can see your face

[Chorus:]
When life won’t play along
And right keeps going wrong
And I can’t seem to find my way
I know where I am found
So I won’t let it drag me down
Oh, I’ll keep dancing anyway

I’m gonna move (move)
I’m gonna move (move)
I’m gonna move

I’ve got to hold it steady
Keep my head in the game
Everything is about to change
Everything is about to change

This hurt is getting heavy
But I’m not about to cave
Everything’s about to change
There’s gonna be brighter days

I just might bend but won’t break
As long as I can see your face

[Chorus]

No matter what may come
Gotta move to a different drum
No matter what life brings
Gotta move gotta move to a different beat [x2]

I just might bend but won’t break
As long as I can see your face

[Chorus x2]

No matter what may come
Gotta move to a different drum
No matter what life brings
Gotta move gotta move to a different beat

Christal

Mastocytosis Recovery Month 7 Day 9

05.07.14

It has been a while since my last update. It was great having some of the Boxberger clan in town for the OKC Memorial Marathon. Everyone did a great job! Plans are already in the works for next year 🙂

After the marathon, hubbie had a conference in Dallas. We thought we would attempt a road trip to see how feasible it is to travel with IV nutrition. It went pretty well but we did learn a few things to make it easier in the future. The pollen counts were lower in Texas and with different types than in Oklahoma. This was really good for me, not only for a change of scenery, but because much of my throat, lip and face swelling went away while we were gone. Most of my face redness and abdominal pain went away. My hair quit falling out as well. It was hopeful to think that in a few weeks perhaps our counts will be that low here.

The kids and I spent most of out time in the room but we did manage to get out two afternoons for one of my favorite activities…. shopping! Brit introduced me to my new favorite store, H&M. As we pulled up to The Container Store, just for a moment, I thought I heard a heavenly choir singing. 🙂 Hubster and the kids got to eat at two of their favorite places: Dairy Queen and In & Out.

Because there is no cure for Mastocytosis, the signs follows us wherever we go. We can never be rid of its complications in our lives but we have a new “normal” now. You just have to do the best you can with what you have right now. You can’t let the memory of the past or the uncertainty of the future hold you back from today’s joy. This trip would have looked differently several years ago and will likely look different in the future. But today we rejoice for what we have. It was refreshing to sleep in, hang out, just spend time together as a family, and take a little break from all the medical stuff. I was pretty tired by the time we got home but overall we had a good trip.

I am so thankful for my extended and immediate family! Great people who I would choose to spend my time with even if they were not related to me 🙂

Children are a gift from the Lord; they are a reward from him. Psalm 127:3 NLT

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Christal

Good Friday: hope when all seems lost

04.18.14

Hello friends,

Many of you have continued to encourage me about posting my Facebook status as blog posts here. I agree that most of these updates are more appropriately a daily journal of my recovery and therefore could benefit my Masto friend many of which are not on Facebook. I will not go back and post my older status updates here but will start from now on to post. If you would like to go back and read the older posts feel free to send me a friend request here https://www.facebook.com/christal.stockwellboxberger

Blessings,

Christal

Day 203 Friday – Last night I tested the medication. I had no reaction at 1mg or at 3mg but my lips and throat suddenly swelled up 5mg. It was very painful and I was remembering how this fall I was living like this 24/7. I was so thankful for the progress I have made. It is not painful today but it is still pretty swollen. I am not discourage. It’s very possible I just did to much- I’m seeing a trend here. My dr says when you are trying something new it’s done with “brute force and awkwardness”. In other words it’s really hard to get up the courage to try because of the potential reaction but you just have to go for it. When you finally summon all the bravery you have it’s hard to know where it should end. It’s like trying to jump in the deep end of the pool but only going down two feet. When my Angelina Jolie lips have gone away I will try again. I think I will try 1 mg the first day and gradually increase the dose by 1mg each additional night. It will take 10 days.

Many of you talk to me outside of Facebook or the blog and I get a ton of questions about how I can be hopeful when surrounded by what seems to be just one setback after another. Today is the day when we traditionally remember Christ’s death in the cross. As my friend David Busic used to say, Good Friday was not the end of Jesus’ story, Resurrection Sunday was coming. Friends, family, and followers that saw him die on that cross, no doubt, had lost hope. They had an idea of how things were going to go and now Jesus was dead. They saw no future because they were viewing the situation by only what they could see. Thankfully we have a God that is infinitely bigger that we are. His death was not the end, it was actually the beginning. We must learn to view our situations not through our own eyes but through bigger enteral eyes. My favorite verse I that learned way back as a Pathfinder in Caravans says “Trust in The Lord with all your heart and lean not on your own understanding”. When our children are babies they cry when they have a need and as parents we show up to feed, change, or comfort them. They have faith we will make everything better. When this cycle is repeated over and over again that child knows their parents will take care of them. They trust us and instinctively run to us when they fall and are hurting. They know we will provide whatever they need and will make everything alright. This is how it works with our Heavenly Father too. God specializes in what looks like impossible and hopeless situations to us. I have faith in Him, know He will take care of me, and I trust in his timing.

Christal

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