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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 🙂

Mastocytosis recovery

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

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Christal
Filed in: Life with Masto | PICC Line | relapse | TPN
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Good Friday: hope when all seems lost

04.18.14

3CROSSES

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
Filed in: Life with Masto | relapse
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Facebook Updates and Upcoming Posts

03.29.14

For a couple of months now I have posted every day on Facebook.  I have not traditionally been a big “Facebooker” so I’m a little out of my comfort zone.  It originally began as a way for me to communicate with my amazing friends who have supported and prayed for me during this current health crisis. Friends wanted a  way to check in on me but were unsure if I would be resting or not feeling well. The response to my updates have been overwhelming. Some masto friends say it’s helpful for them to verify if it is just them feeling bad that day or if it is the Masto. Many have suggested that I make those available here on the blog. I’m not sure if I will post my FB status on the blog everyday but we will see. I have several fun posts coming up. The Great Gluten Free Bread Bake-Off,  How to Cook  Like Your Grandma in a Fast Food Culture,  What’s in your Medication?, How to Save Money While Eating Organic, Cooking Quick Tips, and several food tutorials.  Some of the food tutorials are mast cell friendly and some are for everyone. You probably cook for people who do not have the disease so let’s make it as easy as possible on you. If you don’t want to miss a post be sure to follow me and subscribe by clicking on the little yellow flower down at the bottom of the page. Here is the post from yesterday, which marks six months since my anaphylactic reaction…. that really has not completely gone away.   

Day 181 (Thursday) Today marks 6 months. In many ways it seems longer than six months but I remember it like it was yesterday. Regardless, it has been a roller coaster ride. I had expected to be on a formula long before now and off the PICC line. I had expected to be off the steroids and not have any throat swelling after this long. It is life unexpected. We all face life unexpected, perhaps not in matters of a rare incurable disease but unexpected disappointments none the less. No matter what I have faced, God has been there showing me that none of this is unexpected to Him and he’s got this.

Blessings friends!

Christal

Christal
Filed in: Life with Masto | relapse
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