Monday, August 31, 2015

Chronic Illnesses...A Letter to the Healthy

I came across this letter on a blog today. The letter is called "An Open Letter to Healthy People from a Former Healthy Person". This letter puts a lot of feelings that go along with lupus and looking healthy. There are a lot of reasons we don't talk about our chronic illnesses and a stigma to looking healthy (even though you're not). This comes from the blog
"Dear healthy people,
Let me tell you about becoming a “sickbody.” I have Ankylosing Spondylitis. Right, just don’t even try to pronounce that. We’ll stick with calling it A.S., yeah? Really all you need to know about it for this blog post is that it’s a chronic autoimmune disease. I’ll share a link at the end for you to read more about it. 

I am watching myself transform from a healthy, young, active, invincible woman to a sick, grumpy, defeated, disabled, immobile, needy person. I know what it’s like on both sides now – I’m on top of the fence. I’m at a tipping point and I know which way I’m tipping. What goes up must come down. My fence has a greener side, definitely, but the other side of the fence is perpetually somewhere I’ve already been and can never return. My fence is a prison wall and I have multiple life sentences. I’m not getting out of this alive. It’s all downhill from here, you better believe it. Happy birthday, here’s another pain pill. Ready for narcotics yet? What about steroids? How’s your infusion this month? Oops, those side effects really took about a week of functioning from you, let’s try a new drug before that last one leaves your system and hope for the best.  We’re playing the medication dart board: bull’s eye on that last drug cocktail!
I can see it now, I’m becoming that grumpy old woman with resting bitch face to hide the hideous pain. I’m becoming that woman everyone feels sorry for and others don’t know how to approach because she might explode.
How terrifying to become something we’re all afraid of.
I emit solid grunts and gasps of masked pain and now it’s happening startlingly unbeknownst to me in public spaces. It’s like a fart you don’t realize you let out in a crowded elevator. Who DID that horrendous thing? I’m sharing my vulnerability without choice, with people who do not know me, whose only duty is to hold or withhold judgment of this masked-pain crusader. I am a warrior in my own mirror, but society is not a mirror. In my own space I occupy, I am a saint, I am a god, I am constantly overcoming or succumbing. But to the crowds, the masses, the hoi polloi, I am a poor wretched soul who needs to suck it up and shut it up. People have cancer, for crying out loud, you don’t matter as much. Big brother is watching and you don’t look sick and you’re too young for disability, why don’t you leave that for the people who really deserve it. Suck it up and go find a job (you’ll be dead in ten years).

Many of us you see who are broken, you know us only in our current brokenness. But remember, many of us once were full of life, full of vigor and energy. Remember, many of us still recall the days we had full control and freedom with our bodies. We desired everything and still believed nothing could keep us from being professional soccer players, chefs, teachers, doctors, parents, ballerinas…
Remember when you see us that we once were like you, healthy and full. Remember that we still remember what we’ve lost. Remember we still have hopes and wishes and dreams, and they are no less important, no less meaningful, and no less worthy than yours.
We love. We dream. We hope. We fight. We need. We survive. We succeed and fail. We live. Love us.
We hide the pain because it’s stigmatized, but also because we want to hide from ourselves. These bodies, our bodies, get so heavy we just want them gone. We want to get away from our own prison walls that we did not choose. Our sentences are binding, prophetic, and soul-wrenching. We often wonder what crime we could have committed in our mother’s womb to invite lifelong pain and degeneration. Fairness is a big deal and we battle the meaning of fair with every breath. Why us?
Our tears bathe silent pillows when the world is sleeping. Our cries go unheard when we try to recount them in the cold, sterile, institutional exam rooms we visit too frequently. Home is a white paper covered cot with pokes and prods and needles to track the progression of our losses. Home is where the heart is – broken and beating frantically in our throats during the MRI results. Our second shifts (if we can work at all) are the lunch hours and after-hours we spend on hold with pharmacies, doctors, insurance companies, or waiting in long lines for urgent care or a new prescription that will take full weeks of our lives away from complicated and frightfully severe side effects.  Our vulnerabilities lie dormant until we stand, embarrassed and demoralized, in a crowded room to beg for some quiet because our head is spinning; or when we place ourselves in front of a congregation of people and ask someone to please drive us home right now because we’re sick, so sick.

We, the people, fight in elections for our own versions of political and social progress while we, the chronically ill, stage losing fights in our sleep for disease regression and a return to our traditional bodies. We want an end to this gut-wrenching, spine-aching, head-spinning, disabling gift of our precious sickbodies. The concept of “mind over matter” muddles with the unpredictable, calculated precision of autoimmune inflammation causing kyphosis and iritis and spasms and 28-years-old-turning-74-next-month. We are still alive but we grieve the loss of who we were before this weight of helplessness and disease was inserted into our chest, our brains, our backs, our hearts. We have been blessed with the curse of  witnessing and grieving our own symbolic deaths as we learn to be something or someone we never imagined we’d see in the mirror. We learn to see ourselves from the outside looking in (while desperately peeking outward) because we are strangers in these new bodies and we may never know how to inhabit their unpredictability. If the pain doesn’t take your body the side effects of the pain medication will.
We are not strong, we are not admirable, we are not role models because we woke up and chose to be.  We are strong, admirable role models because we have no choice but to fight for sanity and purpose every day of our lives, with every beat of our heart, with every step of our feet or our cane or our walker or our wheels. What we do is not commendable because our career dream as a third grader was to become a chronically ill warrior.  What we do is commendable because we do not give up the fight against what we did not choose to become. Because we have two choices: give up or fight.

Be with us. Remain with us. We were once leaders, friends, professionals. We did not change, our bodies did. We are leaders, friends, professionals. We are sickbodies, and we’re here until we’re gone.
Love us.
To learn more about Ankylosing Spondylitis, check out the Spondylitis Association of America website."

I wasn't even aware of this specific chronic illness, but I agree with a lot that she said. Looking healthy can be hard, especially when you're hiding so much pain within. Some days are good....some days are okay...and some days are bad. I've gotten where I hide what I can, even from my husband and children. They don't understand and they will look at you when you talk about how you hurt, but they won't understand or even empathize because they have no idea what it feels like or even how bad things must be for you to be vocal...they just hear noise...complaints....weakness.
It's easier to persevere when you have no other choice....who wouldn't push through. I used to think it made me strong, but I think anyone would be strong in my situation. I guess it just makes me human and frail, but in my fragility I have had to lean on God. So maybe this illness is a gift from God to mold me into the person He wants me to be in this life. I have days where I'm tired. Tired or being tired and tired of being....but then I have days where I see how much I have learned from my illness and wonder who I would have been without it? Certainly not better, or at least I don't think so.
Here's to my 47th infusion...and LIFE! At least I can appreciate it!

Friday, August 28, 2015

It's been too long!

Well, it has been forever since I've blogged. I have found myself trying to keep up with the pace of life. It's just too fast for me. The days are filled with thousands of things to do and I never seem to have enough time to do half of them. My daily "To-Do List" seems to roll over to the next day everyday. My body isn't normal. This is just a fact. I am trying to treat my body as a "healthy" body so that I can live a normal life. A job, two kids, PTO mom, volunteer, Service Club leader, a mentor, a wife that keeps the house clean and meals made, taking the kids to soccer games and gymnastics, birthday parties and social events....ITS TOO MUCH. I give up! I surrender. God has made me see that this is too much for me and its time to slow down.
How do you slow down? What does that really look like? Well, for me, I'm starting by taking a year off from teaching. I truly love teaching. It is my calling. It is my spiritual gift and the way I give back to the Lord. I love being in the classroom and I adore my babies that are in my class each year. But teaching isn't just a 40 hour a week's so much overtime and there is always something to take home and work on, or research, or create. The truth is that my Lupus body just isn't what my body used to be! I have to surrender to that.
My older sister also got remarried this summer and her wedding weekend getaway was an amazing weekend for us all. I truly am excited for her and happy that she has found someone who is wonderfully kind, loving, and giving. Here's a picture from the night before the wedding (Me, Mom, & Britt). We stayed at Barnsley Gardens in GA and it was phenomenal....I would love to go back annually! This was a very welcome relaxation and I am always happy to get to see my entire family. 

School has also started back (without me as a teacher) and the kids are still at TCA. They are loving K & 2nd grade!
Here is Tip with his Kindergarten teacher, Mrs. Tracey. She is amazing!!! And he loves going to school!

 Here is Ella McCray with her teacher, Ms. Lauren. They are both excited about school and I can't wait to be a parent and volunteer this year!

 I have also started taking a supplement this summer. It's called EHT and it is amazing. It has given me SO much energy, I've even started running!!!! This is big! I don't run, much less walk with my bad joints, but this supplement has done wonders for my body. I also am sleeping better and my memory is back to normal!!!! Look into this if you have any of these same issues. See the link below.

Watch this video to see how EHT changes your brain to improve your memory! EHT..what is it and how does it work? This is an amazing supplement that was developed by scientist at Princeton and I LOVE it!!!

We also have been working on things around the house, like our chicken coop. We are going to try to get into the farm life a little more. We also traded our 5 horses for 1 that the kiddos can ride.

More to come.....

I leave today with this thought:

Monday, February 16, 2015

A Day of Rest

We've been out of school for two days now (our school shut down because 20% of the student population was sick with flu, strep, or mono), the weekend, and now today, President's Day. We woke up this morning to some snow and a lot of ice and sleet. This was a great surprise, as long as it lasts until tomorrow so we can have another day off of school;) The kids had slumber parties with their cousins last night (who just live two houses down the road) so the boys went to one house and the girls stayed here. They had a great time and now Cliff is out pulling them around on the 4-wheeler and sled. I am sitting here in the house by myself, eating Chicken Enchilada Soup and playing on the computer. I am feeling pretty good, considering I'm due for my infusion this week and having a lot of personal family issues. I am really excited about this video I found online, a video about using red lipstick to cover under eye circles. If you have a chronic illness, you know that you are always tired and I ALWAYS have a hard time covering up my dark under eye circles. So I decided to try this....
A Great Tip for Covering Up Dark Under Eye Circles
I should have taken a before picture, but I got so excited to try it that I just ran upstairs and got started. Here is my after picture:
Hard to believe that it works and that I don't look red or purple under my eyes. I'll have to see how this holds up today in the snow and ice, this should be a great testing day;) Today, it's a little thing that got me excited. Sometimes I believe that God encourages us through small moments and glimpses. I will admit that my life is very hard right now. Very hard and very lonely. Right before the winter storm came in, God gave us a beautiful day to get outside and enjoy the warmth. While sitting at the park letting the kids play the other day, I looked up at the sky and closed my eyes and just felt the warmth of the sun. It was just for a minute, but it gave me the feeling that I'm not alone, that God is here even if He's not answering me the way I want Him to. I hope that moment will help me get through the is next week. I am trying to find all of my happy moments each day, through my children and nature and my close family. Sometimes it's hard, but I'm trying to enjoy each day.

Thursday, February 12, 2015


Well, it's almost Valentine's Day and my birthday...and God gave me a gift. Our school was called off for today and tomorrow due to 20% of our student population being sick with the flu, strep, and mono. Not that I"m glad that anyone is sick, that's not a gift, but the days of rest...that's the gift. I NEED rest. I've been so very exhausted lately. I can't seem to keep up with a normal pace in a normal life. But then, I guess I'm not normal. I am still in the midst of a very emotional time in my personal life. I'm sure that this lends itself to exhaustion, when you can't make life easy or normal or even calm. Why do we have to feel such deep emotions for the people we love? I wish sometimes the God would give me a break...a reprieve. Just for a bit. A long enough time to recoup and get ready for another battle. My mental exhaustion leads to my physical exhaustion. So is true of chronic illnesses, not just for me. I just wish I could climb inside of a bubble for a bit. A bubble filled with a warm, calm paradise that would rejuvenate me. Fiji, here I come. Not very realistic...but I am thinking about buying a heat lamp, a 50 lb bag of sand, and a case of Corona to make my own paradise in my backyard!
Until then...these are my little pieces of paradise. Here they are holding our little kittens;) Find your happy where you can, right? Thank you God for these little "happies". They make my life worth while.

Friday, January 30, 2015

Kittens Were Born

So yesterday Ella McCray and I were home from school since she was sick. It was actually a beautiful winter day and about 65 degrees, so we got out in the yard and on the front porch swing a bit to get some much needed fresh air. Ella McCray even played with the dog and climbed a tree. It's amazing how resilient kids are, even when they are sick;)
 Note to self: Being ALL out of your sleeping medicine is not very smart...must call pharmacy or doctor today. Being on steroids everyday for the past 7 years, I HAVE to have something to counteract the prednisone so I can stay asleep at night. I woke up bright and early, well it was actually still dark out, to the sound of kitten meows...our cat had her kittens..7 so far!!
The kids were so excited. We always had animals growing up, but we always had them fixed. There is something so amazing about watching the whole process of life coming into this world. I truly believe that every child should experience this at least once in their childhood. It teaches gentleness, compassion, the delicacy of life, and the amazing ability of our God. They were mesmerized and we sat together and watched as a few of the kittens were born. Tip didn't want to leave for school, in fear that he might miss part of the births. He is only 4, and this is his last year in preschool, so I caved and let him stay home with us today. Then I watched the sun come up and grabbed my first cup of coffee for the morning.
 My favorite mugs to use are the ones with the kids pictures or artwork. I made this cup for my husband for his birthday this year...but I knew I'd get to enjoy it a bit too! Well, and I knew he wouldn't make one for me;)
(Not a great picture of myself but I'm trying to take more pics with me in them despite the fact that I do not like looking at myself...I look like a different person these days...30 pounds heavier than I'm used to).

Thursday, January 29, 2015


Finding out today that my grandfather will start chemo on Thursday. Praying that at 85 he lives the rest of his life enjoying every minute. I love you Bud!!!

Wednesday, January 28, 2015

Life is Not Lemonade Right Now....Just Lemons

Well, the flu has hit our house. Not much fun;( Tip has been home sick for three days, and I've had to take off and stay home. It's hard being out for teachers. There is so much more work that goes into taking off and leaving lesson plans laid out with detailed descriptions of every minute and activity that you do in a day! That being said, I probably needed this rest too.
 Tip was so exhausted that he fell asleep on the sofa curled up with our puppy, Samson.Sweet face;)
 Ella McCray woke up saying she didn't feel good either, although I didn't believe her. I ended up letting her stay home since her teacher was out and she would have a also meant that we could stay in our jammies and not drive 30 minutes to school, which selfishly, sounded good to me. They ended up entertaining each each this morning by playing mancula (a special thanks to my niece for teaching them how to play over Christmas break). But wouldn't you know...this morning, after getting her dressed and loaded up to go to school, she threw up everywhere. So today, we are all home again, this time with two sick babies...and a mom whose recent infusion has left me tired, drained, and more susceptible to the flu (Clorox spray and the washing machine have been my best friends).'s time to rent some movies and turn the den into a theatre to help pass some time. Yesterday, we did lots of painting and glittering and I'm tired! Even the cats are tired (including Moonlight who should have her kittens any day now)!
Tomorrow we find out about my grandfather's diagnosis of pancreatic cancer. They did a PET scan yesterday and a biopsy last week, so tomorrow they visit the oncologist, along with my mom and two aunts, and find out the prognosis and treatment plan. The only thing we know now is that they believe it's stage 2. This is a picture of my sweet grandparents, Mimi and Bud. This picture is on my mantle and I look at it everyday. I miss being home with my family. I wish I got to see them more often. We grew up very close to my grandparents, spending lots of nights with them and always doing things together as a family. Life just seems to be hard right now. It seems true, that when it rains it pours. Lord, I am asking for a reprieve...a break in the hardships for just a bit. Just long enough for me to gather my strength. Lord, I pray for strength and courage. Courage to rely on you and trust that you will get me through my life right now and help me to be better for these times of struggle.