The story of Jacqulyn
me what they were and so when I went to try and explain it to my parents they didn’t understand what I was talking about or how to help me so it was never delt with I lived having several seizures and it not being taken care. My seizures were partial mall seizures which they call the staring seizure there not as easy to detect. I dealt with these seizures often and also with the inability to understand well which was thought to just be me having a learning disability and nothing else when people were talking to me i couldn’t always understand and as a result of this I was severely bullied and made fun of. I lived probably about 17 years like this never understanding what was going on with me but knowing that there was a problem. I remember that I would have these weird aura feelings and then black out and then I would come too being very tired and it would result in others thinking I was ignoring them or just being a jerk I was made fun of for being in pain alot and for being different i would take ibprophin because of severe pain and was called a pill popper and a hypochondriac or weirdo I didn’t know what was going on with me and it was heartbreaking to deal with this it still hurts to talk about. I had to Overcome many obstacles in my life as a child, they placed me in a resource room i was their untill high school I was held back in 2nd grade and the teachers thought i was a problem child when I was having seizures and not being able to always understand. i remembering fading in and out. When I reached high school I was placed into a resource room their also and I remember feeling like I didn’t want to be there because I was smarter than what they were teaching but I was told that I wouldn’t be able to overcome that class and wasn’t smart enough too with my learning disabilities but despite obstacles i insisted they give me the test and I went on to take a test To get out of that class i passed it and I was able to start normal classes my junior year of high school I started doing well on my own without the resource class i aced debate and history it was a huge challenge for me more than other people but I did it. I remember I could never understand why I was different from the other children but I pushed myself hard to do good in school and despite the challenges I overcame I went on to getting my CNA license My late junior year of high school and went on to become a CNA and work in the hospital and caregiving homes while still feeling that there was something wrong with me dealing with immense pain headaches, body aches, sickness and dealing with the seizures. and comprehension problems and slurred words and just a weird feeling like I was different than others. When I was about 21 after being so discouraged from not getting help i was a adult and felt the need to keep trying so I started to trying to figure out what was going on with me again and went to my 1st Neurologist appt where they sent me on my way and dismissed me saying its probably nothing or it’s anxiety. Despite this guess of a diagnosis I went on trying to live my life again very discouraged but trying to ignore what I was dealing with and be as normal as continuing to work in the medical field and desiring to be a nurse 2004 i got the chance to move to a city with my mom to attend a christian college after telling her i really wanted to be a nurse i went to a Christian college and was so excited to attend but it was short lived because my health got the best of me and I ended up dropping out because of it. i realized my disability was getting more challenging but continued to push to be as normal as i could be my seizures increased some so did pain i was so overwhelmed by my condition and struggles i was discouraged but then in 2009 I met a doctor named Juliana lockman and she was a breath of fresh air after waiting many years she did a advanced MRI on me i sat a hour in a mri with a mask over my head and was admitted into the hospital for EEG testing where I found out I was born with a condition called Grey matter heterotopia (misplaced extra grey matter in your brain) in most cases they can remove the lesions but in my case its extra rare they weren’t able to because I have pervendicular nodular heterotopia (mine is in the spinal fluid part of the brain. Basically I have about 24 lesions in my brain and 12 of those are from Gray matter herotopia and my Gray matter has grown in the wrong side of my brain where the spinal fluid is making it impossible for them to do surgery they said it would kill me. I was so happy to have answers but knew there had to be more going on I went on in pain but having medicine and a actual diagnosis which was a blessing after how long I waited. I tried to live my life and tried not to let this get me down. despite my challenges I have always had a Passion for outdoors and for just being an adventurer i still had many hopes amd dreams and a very adventurous heart so continued to go and enjoy myself outdoors and try and live as normal a life as I could somtimes having 3-4 seizures A-day. my seizure started to get more violent having tonic claunic amd gran mal seizures and falling all the time then around 2016 they started to slow down but the other symptoms didn’t they got worse i started to realize i couldn’t do what i had been able to before It was in this i realized that there was still stuff that I was dealing with that needed to be addressed i was passing out having severe pain, severe migraines, holding weight no matter what i do and falling with bad heart problems: traycacardia uncontrollable blood pressure when standing, no stamina, no energy and feeling very weak sleeping for several days having bad memory problems ect. The things i love i wasnt able to do as much my heart was broken Fast forward to about 2017-2018 I had moved to another state met the love of my life but was still dealing with health problems. I went to see a bone and joint institute specialist and I was diagnosed with chiari malformation and a unfused posterior arch of the C-1 a Condition you have a 0.68% chance of getting This explained to me why I was having the migraines but not the severe pain in my arms and in my shoulders the falling the weight gain and all the other issues. I was so discouraged but kept fighting for answers Later on about 2018 I was diagnosed with whats called cervical ribs I have extra ribs in my neck that are large and wrap around to the front of my shoulders you have a 0.5% chance of getting one i have 2 normally for this condition you have surgery to remove them but because of my health condition doctors are very careful with surgerys im a high risk so that one has also been put on hold. I have weakness loss of feeling, severe pain, loss of range of motion in my neck all this answerd more questions for me but not all of them so I kept pushing for answers why wasn’t I able to loose weight why was i having bad memory problems, why did I fall, pass out, have severe weakness severe migraines loss of vision Ect. Ect. In about 2018 i had moved back home and was having worse memory problems worse vision falling pain weakness weight gain Iwas sent to a doctor he was a rheumatologist and he did testing on me and found out that my IGF1 levels were very low which meant there was a pituitary problem. He sent me over to a endocrinologist that proceeded to tell me he had high doubts I could have growth hormone deficiency or pituitary problems and made me retake the IGF1 test and wait to have the growth hormone stimulation test finally i was referred by my regular doctor to a larger hospital with a better endocrinologist because of this ones lack of care to Where I had a growth hormone stimulation test done and found out that I have absolutely no growth hormone in my body. I was born with growth hormone deficiency and I later on had a pituitary MRI another one to show that I have a pituitary tumor which isnt rare but I also have a pituitary stalk tumor which is a very rare condition where you actually get the tumor inside of the hypothalamus instead of the pituitary In most cases their able to do the surgery to biopsy it to see what’s going on but in my case I have a pituitary tumor and also pituitary stalk tumor and pituitary failure so because of the dangers and because of me being high risk i have been left to deal with that also so I have been living on top of the other stuff that I have with this tumor they are monitoring it. I was also just recently diagnosed after testing with a condition called hyper postural orthostatic traycacardia syndrome basically i cant walk or stand without my pulse going super high and my blood pressure does too so between all those diagnosis finally got me answers i still struggle with all my symptoms my memory my falling fainting pain weakness loss of vision numbers Ect. Ect but i understand today who I am and why I am like I am its definitely not easy but I wouldn’t change it for nothing im stronger wiser and a overcomer living life with my rare diseases. My quality of life may have went downhill for me but living with these conditions despite their challenges has made me me a rare warrior someone who knows all things are possible I will continue to try to live my best life i wouldn’t change who I am for nothing and for all like me we are few we are worthy we are awesome and Rare 💜💜💜