Sunday, September 11, 2011

Hello Today

Ah, it’s 6:00am. It’s time to rise and shine. Oh wait, not so fast! You see I have RA, that’s short for rheumatoid arthritis.

Yea, yea I know what you’re thinking. What’s the big deal, my grandma has arthritis and, she’s fine after popping a couple of ibuprofen.

But, it is a BIG DEAL! Maybe it’s the name, rheumatoid arthritis, that’s throwing you. Perhaps it would be better if we dub it something that sounds more sinister like Autoimmune Rheumatoid Disorder. Or, even better, my favorite moniker for RA, The Bastard Disease That’s Ruining My Day.

Okay, it’s 6:15am and I’ve spent the last fifteen minutes slowly moving each joint, getting the kinks out, as I like to call it. Now it’s time to stand up. Drum roll please… AGGHHH! That hurts! Then to hobble over to the T.V. hutch and pull down my industrial strength RX Bling Box that designed for me by Stephanie Kennedy. It’s 6:20am and I pop pill #1; gulp.

Off we go to get ready for work. I have to sit on a barstool and stoop my body over to fix my hair. That way I do not have to stand for too long or raise my arms above my head.

Meanwhile, my hubby, A.K.A. Super Dad, has been getting K.P., our four-year-old, up and fed.

It’s 6:50am and it’s time to convince K.P. that, YES, clothes are GOOD and we NEED to WEAR them. Next, I brush her hair and supervise her brushing her teeth. This mommy doesn’t do French braids, it’s too painful. We’ll just go with a headband today. Finally, I snag something to eat on the way out the door.

Now it’s 7:20am and I’m dropping K.P. off at pre-K. EVERY morning for the last three years she’s clung to me and cried when I try to leave. I spoke with the director and she seems to think it’s because K.P. is worried about me being sick.

On to work, it is now 7:40ish in the morning. I park in the, gasp, handicapped parking space and head into the building. In my head I’m thinking… Someone remind me why I didn’t choose to work in one of those small town schools… while I slowly meander my way to the fourth grade wing of the school.

It’s almost 8am and my iPod is beeping out my first medication alarm of the day. I grab a drink from the mini fridge and take the second morning dose; gulp, gulp, gulp, gulp, gulp, gulp, gulp, and, finally gulp. On to my daily bus duty 8-8:30am five days a week you’ll find me monitoring the youth of America in an elementary hallway. At least the administration took pity on me and allows me to roll my chair out there to sit in during bus duty.

It’s 12:10pm and I’m wondering if knee pads would be an acceptable fashion statement while we’re on the way to eat lunch. I figure I better not push it since I just recently brought in a letter from my rheumatologist so I could wear my “Ugly” Crocs.

Now it’s 12:40pm and I’m heading back to the classroom. What? Did you think that that teachers got a lunch HOUR? Beep, beep… there goes my iPod again. It’s time for my lunch dose of pills; gulp, gulp, gulp, gulp, and gulp.

Ring, it’s 3:00pm. Goodbye children, it’s been fun, but now it’s time to go home! Beep, beep… there goes that iPod again; gulp and gulp.

Now it is 3:15pm and I can leave work for the day. Yeah, right! I have yet to grade those papers and enter them into PowerTeacher, and, don’t forget, I have to work on the lesson plans in the Madeline Hunter format.

Hello 4-4:30pm, time to go get my angel K.P. What a beautiful day! I assess my body… How’s the pain? Do I need to take a pain pill? How about fatigue? Do I feel strong enough for a trip to the park? No park today. I pick up K.P. and head home.

It’s now about 5:30pm. K.P. and I have been tidying up the house a bit. Okay, well really I’ve been tidying up the house while K.P. drags out more toys. I start dinner after dragging my barstool from the bathroom into the kitchen. Recently I have been making a genuine effort to cook more. You see, RA causes a lot of fatigue. Let me say that again for dramatic effect. RA causes A LOT of FATIGUE. And, after a full day of work, I’m often just too tired to cook anything. This, combined with a significant decrease in physical activity, is probably why I weigh more now than I did nine months pregnant with K.P.

Now, it’s just after 6pm. Daddy’s been home for a little while and we sit down for dinner. This is the moment that RA tends to hit me with a sucker punch . The moment where it all crashes down on me like a massive tsunami wave. SPASH… I am so very tired and sore, and the hard wood chair pokes at all of the tender spots.

Clean up, clean up, everybody do your share. Yea, I know, an idealistic tune if I’ve ever heard one. Daddy and K.P spend some quality time while I clean up the kitchen. It’s now about 7pm.

Time for K.P.’s bath, it’s just after 7pm now. I pull out K.P.’s footstool to sit on while I wash her hair and supervise bath time. After that, we cuddle up for a little Sponge Bob Square Pants and a bed time snack.

Story time, 8:00pm, our little bug K.P. is in bed and we’re reading her a bed time story. After prayers I have trouble getting out of the floor, so Daddy pulls me up.

Now it is time to get some school work done, as in, graduate school work. I climb into bed, pull out my Dell with the custom RA awareness Skinit skin, and get to work. Okay, okay, BUSTED, I also take a few moments here and there to get my daily social media fix. Also, don't forget those last pills of the day; gulp and gulp.

Somewhere between 11pm and midnight I remember that it’s Friday and I have to take my weekly injection of methotrexate, a chemotherapy drug also used in autoimmune patients. Of course I do not call it methotrexate; I call it metho-trex-ACHE! Then I take a shower and go to bed.

As I lay in bed trying to find a comfortable position, I dread the side effects of the metho-trex-ACHE. I finally fall asleep with the one POSITIVE side effect in mind… getting to spend a big part of the day Saturday hanging out in be watching movies with K.P.

Saturday, April 23, 2011

In a Nutshell - Revised Version

I have always been a planner. I am the ambitious person who sets her goals, and then plots out the way to achieve them. Yet, despite all this, my best laid plans scattered like dandelion seeds in the wind three years ago with just a few words, “There’s a 50/50 chance that you have Rheumatoid Arthritis or Lupus.”

Even during my teenage years I knew that I wanted to be a special education teacher. My father is the person who first sparked my interest in learning disabilities. I was, and still am, fascinated by this man who can do anything with his hands. I have watched him take apart everything from a FM radio to a car, fix it, and then put it back together. I wanted so desperately to understand this man who can do so many things, but who could not read or write a single word.

Teaching and advocating for people with disabilities came naturally to me. I remember going to the store with my father as a child and demanding that he buy prizes for me to give a younger girl that I played school with at the babysitter’s home. During my freshman year of high school I transferred to a Christian academy after a long bout with mononucleosis. In this one-room K-12 school house I found my voice. This was the place I first found myself advocating for children who had disabilities.

Growing up I always strove to be an above average student. I was dual enrolled in college during my senior year of high school in 1997. I graduated from Wilkes Community College with an Associate in Arts Transfer Degree in May 1999. Then I went on to Appalachian State University’s Reich College of Education, graduating with a Bachelor of Science Degree in Special Education: Learning Disabilities K-12 in December 2001. I appeared on the Chancellor’s List and Dean’s List while attending both colleges.

I went straight from college into my current position as a Special Education: LD teacher at Twin Springs Elementary School in Danville, VA. I have taught at every grade level during the past nine years as a teacher at Twin Springs. For the last five years I have worked with special education and general education students in an inclusive classroom setting for part of the day and a special education resource classroom for the rest of the day. I have acted as the Child Study and Intervention Team Chairperson for the last four years; meeting weekly with parents, teachers, administrators, and a school psychologist to develop interventions for at-risk students. I love working with special-needs children, and, most of the time, I do not even mind the paperwork that goes along with being a special education teacher. It is the most wonderful feeling when the child who has spent so long struggling to understand a concept finally gets it. Or, when the child who has been labeled the “problem child,” comes to my class and does not get a single discipline referral all year. I still enjoy my job and wish I could go on doing it until I retire, but, sometimes, you just do not get what you want.

As I noted before, the doctor told me I had a 50/50 chance of having Rheumatoid Arthritis (RA) or Lupus. Well, I guess you could say that I drew the short stick. At this point you have probably figured out that I am sick. So let us just begin at the beginning. About five years ago I lost a lot of weight without really trying, about fifty pounds gone in less than a year. During this time my husband and I had also decided to have a baby. We tried for a few months and got no results. So I put on ten pounds, and sure enough I am pregnant a month later. The pregnancy was normal. The problems started after our little girl, Kiley, came. I was so tired and sore on a daily basis it was hard to take care of her. By the time my daughter was about fifteen months old I knew something was really wrong. I went to my family doctor and she tested me for pretty much everything. When I returned for the results I was told about the results indicating Lupus or RA. I also had a vitamin D deficiency and my thyroid levels were off. I was tested again for the RA and Lupus, sent for an ultrasound of my thyroid, and given vitamin D. The new blood work was negative, so we focused on my thyroid. Sure enough I had a tumor in my thyroid, and several biopsies later I had to have it removed. After the surgery I continued to have problems. I could barely function because of the fatigue, leg pain, and joint pain. My doctor did the rheumatoid factor test again and it came back positive. This time I was referred to a rheumatologist. It has been three long years and I seem to get a new diagnosis or medication with each visit to the rheumatologist. The current list is: rheumatoid arthritis, Sjogren's disorder, hypothyroidism, Raynaud’s Syndrome, anemia, and fibromyalgia. My primary symptoms include: toothache-like pain in my legs and hands, joint pain and stiffness, fatigue, extreme sensitivity to cold, brain fog, myofascial pain, tooth loss, frequent sinus and ear infections, and moderately dry eyes. I take an average of eighteen pills daily and an injection of Methotrexate, a chemotherapy drug, weekly. I have continued to teach despite my health issues, even scheduling the thyroid surgery during a winter holiday so I would not miss any instructional time.

So what does all of this have to do with graduate school? Well, my autoimmune disorders have taken a toll. I fear that, with time, my health issues may begin to impact my students. Little things already come up, like not being able to take them outside for recess because of sun and cold sensitivity. I have to carry a barstool with me to bus duty because I cannot stand for the entire thirty minutes. I have begun to rely heavily on technology in the classroom to accommodate for my weakness. I use my classroom computer and LCD projector in preference to the chalkboard due to joint inflammation in my shoulders. About nine months ago I decided that I needed to make a change.

I have spent hours on the Internet searching various online degree programs looking for the perfect fit for me. I wanted a degree that would allow me to continue to teach without the physical demands and stress of being a classroom teacher. The answer did not come to me while roaming the pages of on-line catalogs. It came to me while sitting in an in-service with a local ITRT (Instructional Technology Resource Teacher). As I sat in this thirty-minute class on how to use the ePAT Launcher, a standardized testing tool made by Pearson that I had already downloaded and been using, I thought to myself, “I would be good at this.” Not only could I do the job physically, but I would enjoy doing it and do it well. I have always been a technology junkie, quick to figure out new tools and applications. I spend hours every month searching out Internet resources to use in my classroom. Why not teach other teachers on how to use technology resources in their classrooms?

So now it is time to make new goals and new plans to reach them. My path may not be the one I first envisioned for myself, but I will not allow my autoimmune disorders to take away who I am a heart, a teacher.

Friday, July 9, 2010

The Fifth Circle of Dante's Hell was a Laundrymat!

Despite my claim that I would rather go to town in my pajamas than return to a laundrymat I ventured yet again into that cesspool of chemical detergents this morning. I do not know what is wrong with me. I knew this venture would be an emotional and physical challenge, yet that compulsive need to not leave hampers full of laundry sitting around was stronger than the voice in my head chanting, "No, bad idea, better not, just wait..."

So I drop KP off at preschool and drive on down to Ye, Old Laundrymat in Someplace, VA. upon arrival I note that the door has been propped open with one of those rolling laundry carts. What is this? This blatant disregard for the massive sign posted on the door stating, "LEAVE DOOR SHUT, AIR CONDITIONED." One step through the door and I understand, said air conditioner is not working.

I begin chucking laundry into the double loader a.k.a. money pit. Three loads in and I finally get a chance to sit back and relax. I pull out the Steven King paperback that I bought at the Goodwill Bookstore yesterday and realize I've already read the darn thing. I start to think that maybe the brain fog associated with my autoimmune disorders is a blessing in disguise. I can save a fortune by severing my ties with Doubleday Books and Amazon then just read the same books over and over.

Hearts in Atlantis is just not doing much for me - especially with the trickle of sweat dripping off of my temples and onto the pages. I abandon my laundry baskets to the masses sweltering in the laundrymat and return to my car in hopes of finding entertainment on the radio. Once there I was rewarded with inspirational lyrics such as... "You are my drug, you are my drug, you are my drug, my drug, my drug, my drug...' Please honey, I'm going to need some drugs by the time this song is over.

Later, I am back inside for the transfer from washer to dryer and someone has turned the T.V. to a sports channel. Imagine my joy as I listen to another arrogant, overpaid athlete wax eloquently about himself in the third person.

So I found myself watching the clothes spin round and round and thinking that, if laundrymats existed back in the 1300s, Dante Alighieri may have alluded to one as he described his fifth circle of hell.

I have to go now. I need to treat the second degree burn I received when I reached into a dryer ;-)