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Sorry I have not written but life has been pretty hectic since last Saturday. I will share with you what has occurred and I ask that you stand in the gap and in agreement with us as we pray and move forward in this difficult journey before us.

Well last Saturday March 19 was eventful. We met our fabulous friend Tara for dinner bc she was in town and after I ate I begin not feeling well. Saturday was just a hard rough day in general and spent most of the day in bed but this was different. I began having a terrible headache and body pain. When we got home from dinner I crumbled in tears because I felt so Aweful. Got changed and in bed and took some meds. Within seconds of laying down my body began to go into full on convulsions and were escalating quickly. The sad thing is that my kids were watching and were super scared. Thank goodness my neighbor Megan who was also a paramedic in her day, was home rushed over and watched the kids til my mom got here so John could take me to the ER. Gosh a scary night and lots of meds to calm the convulsions but was sent home eventually with more meds to take for when they begin again. This is part of the disease and I was triggered somehow probably the food I ate.

Sunday John left for an out of town business meeting, my mother came over and and the tremors flared. I took the medicine prescribed went to sleep and as soon as the medication wore off, the tremors would fare back up again. This continued until mid day Monday when the episodes became unbearable again and my neighbor and my friend Amber took me back to the ER. Long story short, I was admitted into the hospital, John flew back early from his business meeting and tests were ran to try and determine why I was having ongoing tremors. All the neurological tests came back normal and we were discharged Wednesday afternoon.

John and I were and still are very frustrated and at a loss of what is going on with my health. On Thursday John took me for an MRI of my upper spine and left hip because I have been having pain throughout my entire spin, neck and pelvic area and my back doctor had ordered the test and I had not gotten them done yet. I also proceeded to get  CT scan of my abdomen and pelvis that my GI doctor ordered.

Went to the Back doctor yesterday and I have slightly bulging disks in my upper spine and neck, I have several little cysts on my hip socket, a labral tear in my hip and an 8 mm cyst on my hip. Next steps from him are that I need nerve testing done on my left leg to figure out why it is going numb and prayerfully their findings will warrant insurance to pay for another MRI. That will be next Wednesday April 6 at 2. I also need to go see a hip specialist because of the liberal tear and cysts in hip. Yet my reality of my back issues is this. I have bulging disks up and down my spine, degenerative disk disorder throughout my spine and early onset of arthritis. My back, my spine, my hip, all cause daily severe pain.

I went to the Gi doctor today because there were several spots on my liver which he is not alarmed with at the present time and would like to revisit it in 5 months with another MRI to see if there were any changes in them.

I also have cysts on my left ovary and some free standing fluid in my pelvis. I a waiting to be scheduled for a sonogram to further investigate what might be going on there. I am also waiting to get a bone density test done. I went last year to do a baseline which showed I was at moderate osteopenia and now a year later I need to see if there have been any changes in my bone density, especially since the disease sits in my bone marrow and I am at risk for early onset of osteoporosis.

I went to my Immunologist today and John and I had a game plan as we went in. We are at our breaking point with whats going on. I have so many complex issues going on and to be honest I am not doing well. I have gotten worse and my soul is just sad and weary. We knew we needed to go to the next step, whether that be UT Southwestern, the Cleveland Clinic or the Mayo Clinic. John and I have been in full agreement that this is too big for what the doctors can do here. So, after meeting with the immunologist he will be referring me to a doctor that specializes in mastocytosis and mast cell disorders out in Boston. He put me back on prednisone to alleviate some of the pain and prayerfully she will except my case and it won’t be a long wait to get in. We are all in agreement meaning John, Doctor and I that the mastocytosis has probably progresses since last bone marrow which was done in January 2015 so his suggestion is that we wait to see if we an get into this place in Boston and then this doctor would run “ALL” the tests over from the beginning.

I am also going to see my Cardiologist today at 11:45 as I have been having chest pains and rapid heart rate. Then I will just be waiting on the sonogram, hip doctor, bone density test and nerve testing to be done, prayerfully the sooner the better.

These past few days have been an eye opener for me. I have come to a place of truly surrendering my pride and letting go, realizing I physically cannot walk through this storm without help any longer. A place where I need to ask for help in my daily activities, a place at 41 years old, I truly cannot function as I used to and  I have to be “ok” with that for now. When I say I need help, I mean I am physically unable to vacuum, I get horrible leg pain and I get short of breath walking up the stairs. My body is in severe pain most of the day and its truly a humbling place to be. Although I am so broken right now and I am so often reminded that He has me and is holding me so incredibly tight as I walk though one of the darkest, heaviest of storms. Letting go to be still and be held, its hard to do but there is no other place I would rather be. My faith, my hope and trust, it has no borders and it only increases as I allow HIM to lavish me with His unfailing love. I am in a place where I need to be still and I need to be held. A place where I need to be served as others are His hands and feet, allowing me to see HIM in bigger, deeper ways.

Lots going on and lots to take in. I am overwhelmed, scared, weary, fearful yet so incredibly hopeful. We are getting answers and it seems as though we are getting a plan together. Gosh this is not what I had anticipated for my life nor what I would I have chosen, however it is what is placed before me and my prayer is that through my tears, heartache and brokenness, that I walk this out faithfully praising His high and holy name regardless of my circumstances and that He would continuously get ALL the praise and glory. Y’all, if I did not have Him as my rock, my protector, my healer, my counselor, my comforter, my hope, my light, love and peace, I would totally be crushed physically and spiritually. To me, there is no other way but HIM.

I ask for continued prayers as my soul is just SAD but as always my hope and faith is not wavering. I know HE has this, is in control and I pray that I can glorify Him even in the darkest of days. Please, please please also continue to pray for my kids minds and hearts as they have witnessed all this and for John, who’s heart just breaks seeing me go through this. Thank you in advance. He is mighty, powerful and He has this and me in his anointed healing hands. Grateful that amongst all the weariness and being frightened I still have hope and peace in Him. We are fighting together and fighting hard and your prayers mean the world to us, they matter.

I will continue to keep you all updated and thank you for being patient with me. Mt heart is to write but it just has not been possible these last several days. Know I love you deeply and I am praying for you all as well.


Philippians 4:13
I can do all this through Christ who strengthens me