Maddie's Cognitive Rehabilitation!
Spende geschützt
Six years ago, on January 26th 2011, I was diagnosed with Systemic Lupus Erythematosus. At the age of 16 that was a huge blow. I remember sitting at SickKids and just sobbing as they told me what this meant for my life. And on top of all of that I had been told that I had larger organ involvement and that my brain was swelling and that it was so severe that I needed to begin chemotherapy the very next day. As fast as those two days went and as traumatizing as they were, I am grateful for the action my doctors took as its what saved my life and why I am still here today. That being said, Lupus still SUCKS. I had to drop out of high school and have experienced many health issues, including 6 other diagnoses, four of which are pain disorders. I have never been able to have a “normal” young adult life. I have lived day to day according to my diagnosis and I am finally sick of being sick and letting lupus and my other illneses run my life! Earlier in 2017 I started to share my “lupus journey” on an instagram account dedicated to being honest about my struggles in an attempt to take back control of my life. Now its time for me to take that control one step further.
I haven’t shared this next aspect of my life with many, as it still embarrasses me, but its time for me to stop being embarrassed and seek out the help I need. One thing that has been difficult for me during these past 6 years has been the change in my cognitive abilities. Prior to diagnosis I was an eager learner and an avid reader, you could never find me without a book in my hand. Since 2011 I haven’t been able to read, the comprehension and processing are no longer there. The government is finally starting to classify Lupus patients with brain involvement as an “acquired brain injury”, acknowledging that the swelling and lesions that lupus can cause to the brain can leave the patient with cognitive deficits. I experience many acquired brain injury symptoms including; memory difficulties, processing speed impairments, reading and reading comprehension difficulties, lack of organization, difficulties problem solving, problems with sustaining attention, issues with goal attainment, lack of motivation and impulse control, issues with judgment and self awareness and not being able to find words or completely leaving words out while speaking are a few things I deal with daily. These cognitive issues have plagued me for years and have lead to severe anxiety and depression as well as a huge blow to my self-esteem. For years I have felt dumb and as if I cannot interact with my peers. It has kept me from pursuing a post secondary education and although I have tried, on three separate occasions, it had become so difficult and stressful that there is no point as it was affecting my physical health. Now that the clinics are taking lupus patients and I am not as ill as I once was, I feel comfortable in trying cognitive rehabilitation to try and fix some of these deficits that’s lupus has left me with.
Before I can begin pursuing rehabilitation I must get a psychological evaluation done to asses what level I am at in order to be able to administer the proper therapy. Unfortunately for me, neither a psych evaluation nor cognitive rehabilitation are covered by the government and can be quite expensive. I would love to not have to ask for help as I try to do everything I can on my own but this time doing it alone is not possible and in order to do what is best for me I need to ask for your help. If you can donate anything towards helping me receive a psych evaluation and cognitive rehabilitation I would be extremely grateful. If you are unable to prayers are always welcome. Just the opportunity to be able to “fix my brain” has been a huge blessing and answer to prayer for me. I’ve dreamed of this for so long and I hope that with some hard work I can make this a reality.
Thank you everyone for your continued support, love and prayers over these last 6 years, it has made things for me much easier! And for my parents and siblings, and extended family, I love you all very dearly and appreciate your ongoing support every day (and thanks for helping me write this Dad)!
If you have any questions regarding the cost, the therapy or anything else please feel free to contact me!
Thanks for the read!
Maddie
I haven’t shared this next aspect of my life with many, as it still embarrasses me, but its time for me to stop being embarrassed and seek out the help I need. One thing that has been difficult for me during these past 6 years has been the change in my cognitive abilities. Prior to diagnosis I was an eager learner and an avid reader, you could never find me without a book in my hand. Since 2011 I haven’t been able to read, the comprehension and processing are no longer there. The government is finally starting to classify Lupus patients with brain involvement as an “acquired brain injury”, acknowledging that the swelling and lesions that lupus can cause to the brain can leave the patient with cognitive deficits. I experience many acquired brain injury symptoms including; memory difficulties, processing speed impairments, reading and reading comprehension difficulties, lack of organization, difficulties problem solving, problems with sustaining attention, issues with goal attainment, lack of motivation and impulse control, issues with judgment and self awareness and not being able to find words or completely leaving words out while speaking are a few things I deal with daily. These cognitive issues have plagued me for years and have lead to severe anxiety and depression as well as a huge blow to my self-esteem. For years I have felt dumb and as if I cannot interact with my peers. It has kept me from pursuing a post secondary education and although I have tried, on three separate occasions, it had become so difficult and stressful that there is no point as it was affecting my physical health. Now that the clinics are taking lupus patients and I am not as ill as I once was, I feel comfortable in trying cognitive rehabilitation to try and fix some of these deficits that’s lupus has left me with.
Before I can begin pursuing rehabilitation I must get a psychological evaluation done to asses what level I am at in order to be able to administer the proper therapy. Unfortunately for me, neither a psych evaluation nor cognitive rehabilitation are covered by the government and can be quite expensive. I would love to not have to ask for help as I try to do everything I can on my own but this time doing it alone is not possible and in order to do what is best for me I need to ask for your help. If you can donate anything towards helping me receive a psych evaluation and cognitive rehabilitation I would be extremely grateful. If you are unable to prayers are always welcome. Just the opportunity to be able to “fix my brain” has been a huge blessing and answer to prayer for me. I’ve dreamed of this for so long and I hope that with some hard work I can make this a reality.
Thank you everyone for your continued support, love and prayers over these last 6 years, it has made things for me much easier! And for my parents and siblings, and extended family, I love you all very dearly and appreciate your ongoing support every day (and thanks for helping me write this Dad)!
If you have any questions regarding the cost, the therapy or anything else please feel free to contact me!
Thanks for the read!
Maddie
Organisator
Maddie Hill
Organisator
Markham, ON