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Monthly Archives: July 2014

This is where the healing begins

07.14.14

Mastocytosis Flare Recovery Month 9 Day 16

Road Trip

After two days on the road, we finally arrived in Florida. I don’t like sitting for so long but really enjoy seeing new and different things along the way. I find America is pretty interesting and it’s people are very diverse. One of the best parts of a road trip for me are all the strange and funny little things you see along the way. This was a Dallas restroom that had an honest to goodness old-fashioned metal prison door on it- yikes! I knew no one would believe me so…

You ask yourself “Did she really take a photo of a bathroom door? ” Yep, that just happened! When I sent this image to my hubbie he said they just didn’t want anyone to steal the TP- lol!

Progress

I have been struggling with this latest round of severe allergic relations since fall 2013. On a recent family vacation to the beach nearly ally my symptoms went away. In May it took about 4 days to really get the full effect of feeling better. You can read about that here if you missed the original post. I have been here about 24 hours and I have started to see some improvement.

I am able to go outside without wearing a mask. Other than our beach trip in May it has been months since I could do that. I tried on the road yesterday in both Louisiana and Mississippi and it was no bueño.
I have been unable to wear any make up of any kind, including lip balm, for more than nine months. Today, I was able to use a tiny amount of coconut oil. My lips were very happy!
Sunscreen has been a huge problem for many years. Today I was able to use some California a Baby Super Sensitive stick without being sick.
We were in town just a few hours when the girls mentioned how much better my color was. What do you think?

This was in the beginning of May

This was yesterday

This was today

Having only arrived here last night, I think that is a lot of progress. I am excited to see what happens this week and also this fall.

On the agenda

In the days ahead I hope to reintroduce formula, decrease the steroids, and get a little vitamin sea. It will take weeks or possibly months to increase the formula enough to get off the PICC line. Recently, I have been very hungry. Last go round, the hunger returned just as couple of months before I was able to start trying new foods. I pray that is true this time!

Healing begins

Many of you have told me you love when I post a song or lyrics. In our family we joke about our Soundtrack of Life because it always seems there is a song or verse that fits the situation perfectly. I have been thinking of this chorus all day, it’s Healing Begins by Tenth Avenue North.

This is where the healing begins, oh

This is where the healing starts

When you come to where you’re broken within

The light meets the dark, the light meets the dark

Hope and joy to you,

Christal

Catching Up and Duck Dynasty

07.13.14

Mastocytosis Flare Recovery month 9 day 15

Lots to catch you up on.

Month long trip

Many of you have ask me if we are moving to the beach. In short, we don’t know. At this point we are going to follow my doctor advice and I will take a month long trip this fall during the most dangerous time of the year. The hope is to avoid the backsliding that usually occurs at this time of year but also to heal and get better.

Beautiful flooring

In an effort to do everything in our power to make Oklahoma work out for us, we spent the last month identifying potential mast cell triggers. This week my loving hubbie took the carpeting out of the rooms that I spend the most time in. To avoid the dust and odors associated with installation, the new floors will be put in while I am gone this fall. This leaves a gap with only the bare concrete floors. A couple of weeks ago, my balloon on my feeding tube broke and I had to have it replaced. Thankfully anesthesia was not needed. When the tube was removed I commented on how disgusting it was. Dr. Miner said ” this is your lifeline, it is beautiful”. His seven simple words have caused a real change in my outlook. He was right, my image of beautiful needed shifting. My concrete floors are helping me to eliminate triggers, they are reducing my allergen exposure, they are helping me get better. They are beautiful

Formula test

My last post to you detailed my adventures of trying my new formula. I am happy to report there were no major side effects. It took my body a really long time but it did process the formula and with out any allergic reaction! PTL!

Medicine test

On the other hand, I recently tried another new compounded medication and it did not go as well. It was a good reminder of how far I have come.

Last minute trip

Many if you know my daughter just graduated this May. She planned a Florida trip for her and three if her girlfriends. At the last minute one of the girls was unable to go and wanted to gift the trip to someone to bless them. I was so excited they invited me to tag along. As I write this, I am in the car in the middle of Mississippi. I will be posting about my progress in the days ahead. Here is a little selfie.

Duck Dynasty

Last night we spent the night in Monroe, Louisiana, home of Duck Commander and the popular television show Duck Dynasty. Before we left town we made a little pit stop to check it out. No Robertson family sighting at the shop but we had a fun time.

I wonder if I’m the first person to be running TPN at Duck Commander.

Blessings,