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Category Archives: relapse

Great Mast Cell Beach Experiment Day 16

09.25.14

Medication Decrease Day

Mast cell medication

In the last year, I have literally been on more medication than food. The most helpful and more problematic medicine has been prednisone, a steroid. Long term steroid use can be very hard on your body causing a lot of health complication, however sometimes it is unavoidable. People with a mast cell disease and many other chronic or autoimmune diseases, rely on these meds daily. In my case the steroids kept the swelling in my throat, lips, and tongue at a life saving level. Even with medication the swelling never completely went away. Being at the beach has significantly helped with the swelling, it is the best it has been in over a year, although still not completely normal. Today we start to taper down. This is no easy task as my body has quit making its own steroids. We are prayerful the adrenal glands will turn back on. The longer a person is on prednisone the more slowly the taper need so to be to avoid other serious problems. I’ll keep you posted on how it’s going. This day is a big day for our family. Anyone who has been on this drug knows how it is a blessing and a curse. It will be a joyous day when. It is no longer needed.

Philippians 4:19 ESV

And my God will supply every need of yours according to his riches in glory in Christ Jesus.

Hope and healing,

Christal

 

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The information contained on this blog is not intended or implied to be a substitute for professional medical advice. This is my experience and for informational purposes only. Please seek the advice of your physician regarding treatment for any medical condition.

Christal
Filed in: beach experiment | Life with Masto | relapse

Great Mast Cell Beach Experiment Day 12

09.19.14

Today the last of my reactions from the  jelly sting were all gone. I feel great! I noticed that my rings were so loose I was afraid I one in particular might fall off. Although I have lost over 75 pounds in the last year, my hands have been so swollen that my rings cut into my fingers leaving deep red divots. Even just a few days ago I had to remove them for fear of having to get them cut off. Now the divots are gone and the rings slide and twist. I need to remove them again but for a very different reason.

The kids flew home yesterday. my daughter Brittany who also has a mast cell disorder called to tell me that before she even got out of the airport she began it stuff up. They went to the grocery store to get a few thing and before she could get home she began to break out in hives. Overnight she got worse and today she has a headache, bad joint pain, and that pesky lymph node in her neck is swollen and painful again. During my weekly call with my doctor’s office I learned that fall flare season is in full swing back home. I’m glad I am recovering here unstead of getting more sick there. I’m not going to lie, I’m nervous about going back. I pray fall flare and cedar seasons are gone by then.

We ran a bunch of errands in the afternoon but made it back in time to watch the sunset. I am just trying to soak in all of God’s beauty. There is a local restaurant we visited last week when my aunt and cousin were in town. They have a unique practice. They celebrate sunset each night by shooting off a cannon. We don’t have a cannon but the thought of stopping what we are doing and celebrating sunset was a pretty fun thing to do. As a photographer I’m envisioning all these pics as massive prints covering my walls. Tonight I am thanking The Father for healing and for the beauty he has created.

Hope and healing,

Christal

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The information contained on this blog is not intended or implied to be a substitute for professional medical advice. It is my personal experience and for informational purposes only. Please seek the advice of your physician regarding treatment for any medical condition.

Christal
Filed in: beach experiment | Life with Masto | relapse

Great Mast Cell Beach Experiment Day 11

09.18.14
Day 11
My son is a high school senior this year and my daughter just graduated college. I’ve not been able to get out and do many shoots this past year so last night the kids and went out at sunset. The photo above is a picture of the back of my camera so the quality is not very good. I didn’t bring my computer with me so it all the images will have to stay on my memory cards until I get home. I am dying to get my hands on these! I am so excited I was able to capture my handsome son with this purple and orange creamsicle sunset!
While taking some pics in the water I got stung by a jelly fish. All three of us were pretty nervous as even normal people can react violently to jellies let alone someone who literally reacts to tap water. I did have a bit of a reaction. My throat swelled, I had a raised red welt where the little guy got me, nauseated, swollen upper lip, dizzy, etc. I was thankful my throat was much bigger to start with or it could have been a much bigger problem. We put vinegar on the welt and the redness got much better and the swelling went down but then I started reacting to the vinegar, that smell just sets me off! Anyway, we did not need to use the Epi pen or go to the ER and after a few hours felt much better. The next day I felt like I do most days back home. My throat is smaller than it has been the last couple of days, upper lip is numb and swollen, abdominal pain is back, I have a killer headache, and just feeling drained in general. I think I will feel better in a few days.
Today the kids fly home and my parents fly in. I’m really going to miss my kiddos! My daughter is my constant side kick and makes sure I don’t embarrass myself with any fashion faux pas. My son is beyond helpful and makes us laugh like a bazillion times a day. I have no idea what I’m going to do with out them! I’m looking forward to chilling on the beach with my parents, visiting, doing some photography, watching movies and M*A*S*H reruns. I am blessed with a great family!

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The information contained on this blog is not intended or implied to be a substitute for professional medical advice. Please seek the advice of your physician regarding treatment for any medical condition.

Christal
Filed in: beach experiment | Life with Masto | relapse
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