Allison | CaringBridge

Allison’s Story
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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.  


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!
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."
Matthew 11:28
"Come unto me, all ye that labour and are heavy laden, and I will give you rest."
Luke 18:27
"And he said, The things which are impossible with men are possible with God."

Newest Update

Journal entry by Allison Workman

I Peter 1: 3-5
“Blessed be the God and Father of our Lord Jesus Christ, which according to his abundant mercy hath begotten us again unto a lively hope by the resurrection of Jesus Christ from the dead,
To an inheritance incorruptible, and undefiled, and that fadeth not away, reserved in heaven for you,
Who are kept by the power of God through faith unto salvation ready to be revealed in the last time.”
Happy Easter everyone!  I have thought a lot about Heaven recently and as I was going about my day yesterday I came to the realization that, when I get to Heaven, I’ll be celebrating Easter every moment.  No, not the bunny or eggs or anything, but my precious Savior Who died and rose again to make Heaven possible for me... a girl who miserably fails Him so often.  What a sobering thought!  I’ll get rid of this sick, diseased body and praise Him for all eternity!  Doctors are afraid I’ll get another infection that will take my life....but I’m not afraid because I won’t go until it is my time, and I know if Jesus would so choose to take me, I’ll be healed for all eternity!  I have an overwhelming peace in knowing I’ve received forgiveness for my sin and trusted the Lord as my Savior.  I know I will go to Heaven when Jesus sees fit that my life on this earth is finished.  I don’t have to fear death or wonder what will happen after I die.  What a wonderful thought to know the moment I leave this earth will be the moment I get to look into my Savior’s face and begin eternity in a truly perfect place!  When you have Jesus, fear becomes faith, trials become blessings, depression becomes peace, pain becomes hope.  A dear friend sent me an acronym for HOPE...
I have peace because of the resurrection of Christ...because He died on the cross to pay for my sin, rose again to have power over death, and now is preparing a mansion for those who ask His forgiveness and put their faith in Him!  Any time I start moping and thinking I have it horrible, I only need think of His suffering for me and my problems don’t seem nearly as big anymore.
Health wise I am doing fairly well!  }read this very quietly!{ ;)  I actually don’t have any appointments until the 23rd (I think) of this month!  I won’t know what to do with my life without at least 1 appointment a week!  LOL!  I’ll sure bud figure something out besides doctors, hospital, or procedures (you didn’t hear that, MCAS!)! :)  Having consistent nutrition through Jane (my J tube) has done wonders for my energy and really my overall health!  My body isn’t constantly starving due to a tube being out of place. I’m so grateful that life with my J tube so far hasn’t been like I expected it to be....which is a good thing this time!  I struggled with a lot of fear going into this because of what my previous surgeon had drilled into my head about all these horrible things that he made sound inevitable if I got a J tube.  When I was facing the disappointment of my previous surgeon’s idea (avoiding the J tube with a longer tube threaded through the existing stoma [hole for tube]) falling through, I couldn’t understand what on earth the Lord was doing.  I had many talks with Him, telling Him I knew everything He did was right, but...”how on earth will You use this for good?  What are You doing with this???”  I didn’t know then what I know now.  Because of that really hard time... I now have a great new GI, a wonderful new surgeon who assures me it is fine to call if I have ANY concerns, and reliable nutrition through a J tube that is working great.  The Lord HAS done good through that struggle.  It was very hard and very disappointing, but I’m now very grateful I went through that heartbreak because life is so much better with nutrition and I have some much better doctors now!  Oh, and I almost forgot.... I had my post op appointment with my surgeon and I asked about the very strong "pop" I felt in my intestines.  He checked my tube and said it was obvious that the balloon was in the right place so that was comforting, but I was still VERY curious as to what on earth the pop was!  I mentioned the fact that the big indention in my abdomen that had been there since surgery was gone now.  When I showed him where the indention had been it was like a lightbulb came on in his head...He said he stitched the intestine to the abdominal wall and he might've caught some of the inner layers of skin, creating the indention and, when I bent over that time, that stitch finally let loose of the skin which could cause the pop and then the indention disappeared because the skin wasn't caught anymore.  So I think we solved the mystery! :)  
I’ve begun periodic manual draining my stomach some which means I disconnect the drain bag and manually drain my stomach with a syringe. Might sound gross, but I’m working towards being able to disconnect from the stomach drain bag and only do manual draining through the day. This will mean I would be manually draining when I would eat something or if I become nauseous instead of losing all water/stomach juice and everything continuously all day and night long. I’m hoping this will help me stay hydrated easier and it has to be better for my body. Hopefully I will be off continuous draining (accept for nighttime and when I’m out) within the next couple of weeks. It’s a slow process and it may get to a point that I can’t advance any further for the time being, but my hopes are high that I will reach my goal. I have had significantly less nausea and bloating lately which is why I’ve become adventurous enough to try this! :)
Well, I hope everyone has a great day today focusing on our wonderful Lord and what he has done for us!
Taking Life One Grateful Moment at a Time,
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