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This is my life – My experience with chronic illness


I was granted disability yesterday. It’s a blunt hard statement for me; one that reeks of failure and giving up. I’ve been fighting against being sick; being handicapped since I was 12 years old. While I know this is for the best I really can’t help but feel like I’m letting the 12 year old version of myself down.
I think to understand my story you need to know a bit of history. I was born to a pretty normal family in Northern NJ, yes that where the Real Housewives of NJ are from. My Mom was a single parent; my father was completely out of the picture and she was responsible for everything. She did a great job. Our house was really creative, my mother is an elementary school art teacher so we were always doing crafts. It was a really good childhood and there was a lot of support and time spent with my grandparents both of whom taught me things they thought I needed to know about.


With my Grandmother it was music, we listed to Opera and classical music while she drove me to school. Rigoletto and Carmen were our favorites. I loved listening to her explain the music. It will always take me back to cold mornings in my grandmother’s kitchen while the car defrosted. The house would be so warm you felt toasted after the iciness outside, and it always smelled amazing like coffee, rye bread, and orange marmalade.

My Grandfather loved to learn. He spent a few hours every day studying and the topics ranged from languages; Korean, Spanish, Greek, and Russian to computers, and even the classics in literature. Time an again I would see him in his office; a new client would come in and he could at least say a few words to them in their native language. He taught me about the classics, giving me copies of Shakespeare (his original book which he purchased in the 20’s used, just beautiful) to hHmers Iliad and Odyssey. I loved to talk to him. We saw everything so differently, he saw the world through the political sphere and I saw it through the religious or spiritual.

At 12 I was happy and flourishing, definitely a geek but a happy one. Until I woke up one morning with a headache and my life changed forever. Within two weeks I couldn’t walk to the bathroom myself. I was so week that eating became difficult. Every inch of me hurt to the point where I could no longer lay in my bed, just the pressure of my body on the mattress was terribly painful. It took a few weeks, but my Mother got me an appointment with a Doctor at the Hospital for Special Surgery in Manhattan. We had to get up super early so he could fit me in before his regular patients came in. My mother was white, stiff, scared, I could barely get dressed and into the car but it was worth it. I was soon diagnosed with Lupus and Kidney disease.

My life was never the same I became so ill that I was unable to go to middle or high school. I grew up in doctors offices and hospital rooms. I spent most of my time reading; I would read anything that I could get my hands onto. When my local public school made it impossible for me to get any type of education through them and basically told me to drop out we decided that I would go to school online. I got my High School Diploma from the University of Nebraska’s Independent High School.

I was surviving at this point in horrible pain, but surviving. When I started to get much sicker. At 16 I was diagnosed with Pseudotumor Cerebri. Within a few days I went from having extremely severe headaches, we’re talking like migraine from hell, to my vision warping, losing my depth perception, and then finally losing about 90% of my visual field. I don’t know how to explain how terrifying that is, to lay in a hospital bed that they rushed you to, and have a doctor say you may be permanently blind. It was sickening, I remember thinking of all the paintings my Mother had taken me to see At the Metropolitan Museum of art. I know that sounds odd, but the idea that I would never see those colors again it changed the way I thought about the world forever. The only good thing about the Pseudotumor Cerebri was that after the month, in the hospital, and the months for my ocular nerves to heal; my body was finally feeling better. I was able to got art classes out of the house! Even better my teachers thought that I should go to art school.

It was as though the clouds had parted, and even though I had to take a handful of pills twice a day and go to at least 5 doctors appointments a month I felt free for the first time. I got my High School Diploma and even went back to my childhood camp to work in the office for the summer. It was wonderful. During this time I was accepted to Rhode Island School of Design for college. After 6 years of being trapped in pain in my house I was finally escaping.

My years at RISD where difficult but wonderful. My doctors put limits on how many credits I could take and I had to rest when ever I could but I really grew as an artist and a person. I had a wonderful support system of friends and I met my Husband Rich my sophomore year. In classes I always tried to hide the fact that I was sick or if not hide it I didn’t want to be treated differently because of it, but there were times when no matter what I did I couldn’t hide it. One of these unfortunate incidence happened in the middle of a Jacquard weaving class. I had been flaring badly for a few weeks and my doctors had upped and upped my meds. One minute I was sitting there fine filling in the answers to the test, the next I had no idea what my name was, where I was, anything. The funny thing was I just felt embarrassed; I didn’t know what I should do. I actually filled in the rest of the test and went up to the teacher asking if I could talk to him in the hall. Once I finally convinced him something was wrong, and I wasn’t joking he freaked. They took me to the hospital, where it took a few hours for the medication to ware off and my memory to come back. I was told it was one of the more unusual reactions to that particular medication. This may seem like a big event, but I still had work to do and classes to go to.

I got through school and even got a job starting immediately after graduation. I felt really lucky, I was designing bedding patterns for a major company, and even better my work was selling. I loved designing bedding and bath patterns and was really excited about it. Seeing bedding sets that I worked on, or even designed in a store a year after graduating was more than I ever expected.

I didn’t think I was going to get sick again, I could handle what I had. The Lupus had gone into remission and Fibromyalgia had taken its place, I still had to deal with the Pseudotumor Cerebri and strange terrible burning pains that would happen for a few weeks in the spring and fall, these burning pains left me feeling like my skin was being fried in hot oil. Rich and I would spend the night in the Emergency room, I would be hooked up to an IV for pain meds while he read to me. Once I was discharged he went of to work and then class, and I would pull myself together and get to class. I tried to balance everything I could even though there were times we would be in the emergency a few nights a week.

My doctors had mentioned Central Pain Syndrome in relation to the burning, but it came and went, and with every thing else going on honestly I didn’t pay attention. I was enjoying working, making my own money and being newly married. It was an amazing time. I was trying to ignore that I was getting sicker, I wasn’t able to do anything but sleep after work and I had to stay in bed all weekend. And the burning that had sent me to the emergency room never stopped anymore. Even in my dreams I felt the heat crawling all over my skin. First the rheumatologist said I had to stop working, then neurologist. It was horribly painful and I felt like going for disability was giving up. I had been fighting for so many years, but I couldn’t work I couldn’t even leave the house the pain was so sever. I had to listen to the doctors and change my life no more stress no more working and no fluorescent lighting. Stay as calm as possible. The lighting was the hardest part, we realized quickly that I became so much sicker as soon as I was exposed to fluorescent light. I don’t need to see it or know it’s there I just quickly start to burn and get weak.

For the last two years now I have lived with this and I fought to get disability. I jumped through all of their hoops. Examinations by their doctor. Now that its approved I find myself torn, yes this small bit of money that I’ll get will definitely help out and I know that there is no way I can work, but I am still a creative person stuck in this body. I still have dreams and ambitions; of designing, bedding collections that will make people happy. I hope that in the future I will still be able to create beautiful things. I don’t want this to be the end of the story just the beginning.

If you know anyone who suffers from chronic pain, reach out to them and let them know that everything will be all right.

What is Fibromyalgia – http://www.mayoclinic.com/health/fibromyalgia/DS00079
What is Central Pain Syndrome – http://www.ninds.nih.gov/disorders/central_pain/central_pain.htm
What is Pseudotumor Cerebri – http://www.mayoclinic.com/health/pseudotumor-cerebri/DS00851
National Lupus Foundation – http://www.lupus.org

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4 thoughts on “This is my life – My experience with chronic illness

  1. Pingback: Tweets that mention This is my life | The Painted Rabbit -- Topsy.com

  2. I read your blog entry and wanted to contact you regarding the ebook I am compiling of inspirational stories written BY chronic pain patients FOR chronic pain patients.  I have recently rediscovered my passion for writing…and by focusing on writing I’ve been able to lower my pain level.  Not a lot, to be sure.  But enough to make it noticeable.  If you’re interested in telling your story in an ebook, please contact me at drew_bufalini@yahoo.com for the project specs and a sample chapter. If you have an inspirational story to tell that you think could help other people, this ebook will be THE place to it. The title? Chronic Life: Finding Meaning Despite Your Chronic Pain.

    Hope to hear from you,

    Drew

  3. I am so sorry to hear that. I can’t imagine being in that kind of pain. I truly hope that things will get easier for you. I believe that you still do make people happy, though, with your beautiful jewelry designs! I’m so amazed that regardless of all you have been through, you are still staying strong and making beautiful things!

    • Thank you for commenting. My biggest fear is really not doing anything and not contributing, sometimes those fears are worse then the pain. Jewelry really helps me feel like like I am still contributing and helping. Thanks again and have a great day!

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