Allison | CaringBridge

Allison’s Story
Visit my blog: http://allisonworkman.blogspot.com
See my full story: https://www.youtube.com/watch?v=bMQHTdQrSg8

If you would like to help with the medical expenses of my two sisters and me, it would be greatly appreciated!  Two of us have been formally diagnosed with Mast Cell Activation Syndrome and Ehlers-Danlos syndrome, and another sister has the elevated labs and symptoms but needs evaluated to be diagnosed.  We had been seeing a specialist in Charleston, SC, but he moved to Minneapolis, MN.  It will be much more expensive now to get to our appointmentts, and there isn't anyone close that can guide our local doctors in our treatment.  

COPY, PASTE & SHARE: http://www.gofundme.com/85vnkk


God is doing a marvelous work in my heart and life through physical trials! I have Ehlers-Danlos Syndrome Type 3 and Mast Cell Activation Syndrome.  I hope you spend some time reading my story! Please take a minute to sign my guestbook! I really appreciate your encouraging notes! Be sure to sign up for email alert! Thanks for visiting!

Isaiah 26:4
"Trust ye in the LORD for ever:  for in the LORD JEHOVAH is everlasting strength:"


I am a 22 year old who enjoys playing the trumpet, listening to classical music, photography, being outdoors, laughing, and anything purple & zebra stripes!  The Lord has blessed me with a sweet supportive family of 8 (other than me) ~ Dad, Mom, 5 sisters and 1 brother!

My journey began in April 2007 when I had my first anaphylactic reaction to a casserole and had to go to the emergency room.  I had been having strange sensations in my mouth when I would eat certain foods for about 6 months prior to this reaction but would just eliminate the foods.  I still struggle with anaphylactic reactions to most drugs (including pain relievers) and many foods.  I can only eat very few things.  In December 2008 I broke my clavicle and messed up my shoulder and SC joint.  My SC joint began bruising and swelling and was bruised for several months.  After that, things seemed to go down hill!  I began having a lot of trouble with my joints (knees, ankles, shoulders, wrists, neck, and back) and easy bruising.  My right shoulder will pop and I lose all motion and almost all feeling in it.  I was wheelchair bound from December 2010 to March 2011.  I then was able to walk with a walker and air casts on my ankles and braces on my knees, although I could only walk for very short distances.  I can sometimes walk unassisted wearing HKAFO (Hip, knee, ankle, foot orthotics) braces although sometimes I use forearm crutches or a wheelchair.  I am unable to walk without my braces because my knees hyperextend (go backwards) and my ankles turn.  I can no longer walk at all on my own!  I have been to several specialists, and after 4 years of waiting & wondering...I was diagnosed with Ehlers-Danlos Syndrome type 3 (Hypermobility Type) on October 25, 2011.  I was diagnosed with Mast Cell Activation Syndrome on April 23, 2012 which explains all of my symptoms.  I was diagnosed with Dystonia on December 18, 2012.  I have been diagnosed with Chiari 1 malformation but at this point the doctors do not believe that it is causing any of my symptoms.  Before all this started I was a "normal" child (other than joint pain & slow healing of joint/bone injuries) with a love for the outdoors!  I loved rollerblading, biking, riding scooter, and jumping on my pogo stick!  I rely on the Lord for my strength!  He is the Great Physician and I know that whatever happens is in His hands!

Please pray for me!  I am really thankful for people that pray!  It is a great encouragement to me!
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II Corinthians 12:9
"And he said unto me, My grace is sufficient for thee:  for my strength is made perfect in weakness.  Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
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Matthew 11:28
"Come unto me, all ye that labour and are heavy laden, and I will give you rest."
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Luke 18:27
"And he said, The things which are impossible with men are possible with God."

Newest Update

Journal entry by Allison Workman www.caringbridge.org/visit/allisonworkman

Hi there!


    So my tube change last Tuesday went very well!  The burning pain at the tube site is gone, most of the granulation tissue has fallen off, and my hickman is working wonderfully again!  The only negative is that the Mic-Key button tube isn’t draining my stomach very well.  I’m in the process of shuffling around the foods I’m eating to see what will drain and what won’t.  I’m really, really hoping I can figure out an avenue to make this tube work cuz it is sooooo much more comfy than a regular PEG style tube!  Only problem is it doesn’t always even drain stomach fluid and I’m ending up with a lot more bouts of nausea and extreme reflux.  If I don’t soon find a way to get this one working better, I will probably have to give up and go for a swap to a less preferred tube.  BUT it will be a simple switch-a-roo if I do end up having to get it changed because it’s just a deflatable balloon inside holding it in.  We shall see whether or not this stubborn little thing starts working in the near future!  I did learn that getting my old stoma surgically closed is an optional thing and isn’t a requirement if it doesn’t close on its own (which it hasn’t so far).  My GI is still in hopes that it is just taking a bit longer because of the condition it was in before we removed the tube, but it isn’t a big deal if it doesn’t close.  It’s a matter of when (or if) I get to the point of “I can’t deal with this anymore” and want it closed.  Right now it’s just a nuisance and I (and my GI) don’t want to go the surgery route.  Maybe one day I’ll get to where I’m just totally fed up with the messy shirts and embarrassing noises, but for now, I’d rather have this than get the surgery to fix it.  Still hoping it’ll close on its own though!


Our NY trip went fairly well.  The appointments were good...got some useful pointers and some more ideas to try for treatment.  We got to do a little site seeing before we traveled back home.  Thursday evening we got to go on the Staten Island Ferry and see the Statue of Liberty in addition to more of the NY buildings!  It was definitely a gamble with MCAS, but was worth any grief it caused to see those things that I’ve always wanted to see!  We left Friday morning and got home around 1am on Saturday.  I didn’t have too terrible of a time out of my MCAS on the trip but after getting home, the traveling, and everything I did, came back to haunt me. :/  I’ve been a little achy, but the main issue has been with my dysautonomia  (heart rate and blood pressure).  My heart rate keeps skyrocketing and my blood pressure keeps plummeting, especially when I try to get up.  My home health nurse came this afternoon to check things out and confirmed the issues so my doctor is getting me some IV fluids ordered for home.  Usually those help a good bit...hopefully they work their magic again this time!  My nurse took my STATS sitting and then had me stand and, within seconds, my blood pressure had dropped quite low and my pulse was picking up speed.  I think my body has just had it with the trip plus my feeding pump for my tube feedings has been acting up and not feeding me correctly, so I’m not getting the whole amount of formula I’m supposed to get, either.  Hoping to get that straightened out soon, too!


Praise the Lord, the pharmacy that mixes my IV diphenhydramine (Benadryl) bags got a big shipment of my Benadryl and said they’ll easily make it through the shortage!  So, sooo happy to hear that news, and I’m very glad they won’t have to take from my bolus supplies to be able to make it through!


Thank you so much to those who have prayed and continue to pray for me and my family!  It really means a lot to me!  And I apologize for not getting this written sooner, but it has just been a rough recovery from the trip, making it a bit difficult to get an update out.


 


Taking Life One Bag of Fluid at a Time....


Allison

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