Allison’s Story

Site created on February 3, 2011

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!

     I want to start off by wishing all of the wonderful mothers out there a happy Mother's Day!

It has been nearly 5 months since I last updated.  WOW!  I kept telling myself that I really needed to update, but the more time went by the harder it was to catch up.  So, bear with me as I try to make up for lost time!

My health took a drastic turn in the beginning of January.  I firmly believe my MCAS decided to say phooey on any new years resolutions and started a full fledged revolution! ;)  I began feeling very achey all over and very fatigued.  It gradually worsened over the course of a couple weeks and I began having headaches, nausea, and lack of appetite.  I got to a point I couldn't eat anything by mouth other than liquids that would come right back out via my G tube drain and couldn't do formula either.  This made it to where all I was getting was 2L of fluid per week.  I became extremely sick and weak with a resting heart rate of 155 and ended up being admitted to the hospital for 5 days due to severe dehydration.  They were continuously giving me fluids, gave me 10 bags of potassium, and got me back on formula, albeit a very low amount over a long period of time.  By the time I was discharged, I had improved a good bit.  Once home, I quickly started to deteriorate and almost got to the point of having to return to the hospital.  However, in an attempt to keep me home, my local mast cell doctor put me on potassium infused saline infusions 5 days a week in addition to the 2 days I was already receiving the plain saline infusions from my cardiologist.  Thankfully, that successfully kept me outpatient!  I continue to struggle with nausea, headaches, fatigue, aches, etc. and I have lost 63 pounds so far this year which has resulted in having to have multiple J tube changes because Mic Key Buttons aren't adjustable, so once I shrink to a certain point, the tube gets way too loose which makes it necessary to change to a smaller size.  I'm nearing the point of having to have it changed yet again.  I've gotten my formula rate up a little bit since my hospital stay and have my pump set to where it runs around the clock, feeding me for 2 hours and then automatically stoping for an hour to give my body a little rest.  I still cannot eat/drink anything by mouth unless it is something that will automatically flow right back out through my G tube drain.  I am on a liter of potassium infused saline all days of the week now due to very little fluid intake (in my formula) and my potassium fluctuating and being low most of the time (I get blood drawn to check up on my levels once a week when my home health nurse comes) and I'm on an oral B12 and folic acid supplement due to those being deficient.  There are days I feel so defeated and want nothing more than to curl up in a ball and die, but I'm so grateful for the Lord's strength and the people He has put in my path to encourage me.  The Lord has shown such grace and comfort on my behalf, and I know, even when I feel so alone, He is always here with me.  It is still a mystery as to what really set off this whirlwind in my body, but for now, we are treating symptoms and trying to fix everything it is causing.

On a happy note.... I'm excited and looking forward to welcoming another niece next month!!!  Vivian will officially have the roll of big sister!  If Auntie Allie had enough energy she would definitely be doing a happy dance! ;)

I appreciate your continued prayers and support through this difficult journey!  I make no promises, but I will try my best not to let so much time pass before my next update!

Allison
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