The Divine Weaver
So, it has come to my attention that I have confused a lot of people with my health issues; both "current" /ongoing and past/present/enduring health issues. Confused still? Yeah, I can imagine. Let me help you out.
Well, my life long battle illness (which is most likely the root cause of most of my other illnesses) is called neurofibromatosis type 1 (NF) , which is a genetic disorder that forms tumors that causes abnormal growths in certain areas (such as the the face, ears, mouth, neck, spine, etc). It can also cause dark and abnormal skin discoloration. Most of the time, these tumors are non-cancerous and by God's grace, I haven't had any that are cancerous. Some of the tumor are painful in areas, especially in areas near the spine and face. I've undergone EXTENSIVE surgeries as a child to treat these conditions including countless skin grafts to repair the dead skin/skin discoloration by having skin grafts. I've had countless tumor removals and many recovery periods.....I still and will continue to go through surgeries as needed.
So, whenever a "new" health issues comes up, the first questions my doctors asks "is this NF related?" You'd be surprised how many health issues relates to NF. Sometimes it's a easy answer and we know how to treat. But sometimes.....the answer just isn't there. The doctors has to search for it; I get frustrated and they get frustrated. So to find out of it is NF related I go through CT scans, MRI scans, etc. If it's negative, we go through one doctor, then another.....then another...........
....which brings me to where I am now
After many tests, my UVA doctors concluded my current health issues with my stomach does not seem to have anything to do with my NF. I was sent to my neurosurgeon, genetic doctor, endocrinologist, and ENT and they all cleared me of any "unusual" things. For the past (almost 3) years, I've battled with these stomach issues. The doctors still can't figure out much of the right lower pain and the mid upper left pain; but they have found out my swallowing issues. They have found out 2 things. I have a hiatal hernia esophogitis (inflammation in the esophagus); there's really no cure only medication treatments.
Some of you ask how I do it. How I get through this. All I can say is prayer and a lot of faith.... even as small as a mustard seed.
The hard part is NOT living a lifelong battle with NF.
The hard part is NOT trying to deal and live with pain day in a day out with these stomach issues,
Honestly, the hard part is understanding all this
The hard part is trying to be content and not ask "why"?
The hard part.......is always to remember to cling to HIM......for it is Him Who made created me for His divine purpose.
I recently read this from a pamphlet I had a long long time ago from Grand Rapids MI, Reformed Baptist Church; "We are made, not by and unreasoning, unthinking, impersonal biological process--but by God's own hands. We are molded by the Great Potter. We are woven together on the loom of the Divine Weaver."
Well, my life long battle illness (which is most likely the root cause of most of my other illnesses) is called neurofibromatosis type 1 (NF) , which is a genetic disorder that forms tumors that causes abnormal growths in certain areas (such as the the face, ears, mouth, neck, spine, etc). It can also cause dark and abnormal skin discoloration. Most of the time, these tumors are non-cancerous and by God's grace, I haven't had any that are cancerous. Some of the tumor are painful in areas, especially in areas near the spine and face. I've undergone EXTENSIVE surgeries as a child to treat these conditions including countless skin grafts to repair the dead skin/skin discoloration by having skin grafts. I've had countless tumor removals and many recovery periods.....I still and will continue to go through surgeries as needed.
So, whenever a "new" health issues comes up, the first questions my doctors asks "is this NF related?" You'd be surprised how many health issues relates to NF. Sometimes it's a easy answer and we know how to treat. But sometimes.....the answer just isn't there. The doctors has to search for it; I get frustrated and they get frustrated. So to find out of it is NF related I go through CT scans, MRI scans, etc. If it's negative, we go through one doctor, then another.....then another...........
....which brings me to where I am now
After many tests, my UVA doctors concluded my current health issues with my stomach does not seem to have anything to do with my NF. I was sent to my neurosurgeon, genetic doctor, endocrinologist, and ENT and they all cleared me of any "unusual" things. For the past (almost 3) years, I've battled with these stomach issues. The doctors still can't figure out much of the right lower pain and the mid upper left pain; but they have found out my swallowing issues. They have found out 2 things. I have a hiatal hernia esophogitis (inflammation in the esophagus); there's really no cure only medication treatments.
Some of you ask how I do it. How I get through this. All I can say is prayer and a lot of faith.... even as small as a mustard seed.
The hard part is NOT living a lifelong battle with NF.
The hard part is NOT trying to deal and live with pain day in a day out with these stomach issues,
Honestly, the hard part is understanding all this
The hard part is trying to be content and not ask "why"?
The hard part.......is always to remember to cling to HIM......for it is Him Who made created me for His divine purpose.
I recently read this from a pamphlet I had a long long time ago from Grand Rapids MI, Reformed Baptist Church; "We are made, not by and unreasoning, unthinking, impersonal biological process--but by God's own hands. We are molded by the Great Potter. We are woven together on the loom of the Divine Weaver."
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