Love for Today

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Tonight the phrase “live for today” has been ringing in my ears. I’m in significant pain. I have rheumatoid arthritis and it has been destroying my joints quickly over the last year and a half. I suspect I have had it longer than the year and a half since I was diagnosed but the symptoms that led to the diagnosis were too much to ignore after I stopped nursing my fourth and last child. It’s been quite a ride since. My rheumatologist thought I had a pretty mild case until last summer when my symptoms became severe. The disease has made it it’s business to deform my hands, destroy my shoulders and knees, and cause me daily pain.

Tonight I am once again in my bed watching a movie, writing, resting and desperately doing anything to keep my mind off of the pain. While my family plays downstairs, I am up here in pain, wishing the disease would go into remission. I know I am not alone. There are many people just like me who are wrestling with disease, desperately wishing the pain would stop. Each day I’m in pain reminds me of the damage the disease is doing because the deformity of my joints doesn’t happen without pain.

Pain is all I think about these days. How much pain will I wake up in today? Will I be able to get my housework done? Will I be able to handle one of my son’s serious seizures? Can I get through the day? There have been numerous days when my little girls played a game on my bed, danced around my room, and seemed more than understanding when their mommy has been unable to get out of bed. Now that summer is here and all four are at home, how will all of us handle one of those inevitable days?

Today a picture did me in. It was a photo a mom snapped and posted on social media of her daughter jumping into the pool. She captioned it something like this, “my daughter is getting braver during her swim lessons”. It broke my heart because none of my children have had swim lessons. Not one of my children from nine years old to two knows how to swim. The excuses for which have amounted to one or all of the following; too many kids for the pain, the added stress of taking a special needs child, and financial stress. My kids miss out on a lot and I know I am to blame. Now that I have rheumatoid arthritis, I’m not sure if my son will ever have the opportunity to hit a home run during summer t-ball or if I will be able to see my daughters in a dance recital. Disease has not only robbed me, but each one of my kids. On the other hand, I get to spend a lot of time with my children. I get to enjoy every last minute of their childhood and I wouldn’t trade that privilege for anything in the world. I know I can’t give them all the opportunities I think they deserve, but my husband and I have tried to give them mommy. I have been here as much as possible since our oldest was born. I had a part time job for five years but quit to take care of our medically complex child three years ago. Mommy may not be able to take them to all the places they want to go, but they know I will always be here for them.

These thoughts brought me to “live for today” and was finished with the thought “because tomorrow is never guaranteed”. Nothing drives this point home quite like chronic illness. I never forget that my disease could be damaging my organs at a speed equal to the damage it has done to my joints or epilepsy could take my little boy as he sleeps at night. It’s hard to take the advice of others who think I should “keep smiling” or say, “hang in there!”. It’s hard because no one can fill in for me and take the non-stop mental or physical pain. One compounds on the other until I finally break. About once a month my husband can expect me to cry through a box of tissues. Every last worry comes spilling out and I blame myself for all these thoughts and more. Maybe it’s then when the reality of our life becomes abundantly clear; so much has changed in very little time.

It wasn’t that long ago when I held my newborn son and he was seemingly healthy. I looked at him and saw a lifetime of memories in his little eyes. I could envision a future filled with all of those things a mom expects. It took a ten second seizure to change all of that. Our little boy had an incurable disease and the future didn’t look as certain. Two years ago I could hold each of my children and not think twice about how I was going to get through the day. Now my children crawl on my lap to be held and they know they have to be careful around their now fragile mother. I wake up wondering how hard it will be to get through the day. Did I really appreciate everything I had before it changed? Do I appreciate what I have now? I hope so but since I know how fast things can change, I try to thank God for today. Today is all I have and each second beyond that is a gift. I’m still struggling with each second but I’m glad I have another.

Disease can change the future we may have anticipated for our son, my physical appearance, and the way we look at life but it can’t take away the love in this family. Disease didn’t anticipate unconditional love. We don’t have to guess if love will prevail in sickness and in health, it already has. There is no doubt if my husband will love me even if I don’t look like the woman he married because I already don’t. Our children will never wonder if something they will do will alter our love because they have witnessed it prevail through it all. I think I should change “live for today” to “love for today”.  Disease can take what it will but it can’t take our love, nothing can take that, and for that, I am truly thankful.

*d*

Thoughts After the Pain

While we were at Texas Children’s Hospital (my son was having neurosurgery work-up) we had at least 8 hours to occupy while my son had tests run on our last day there.. We passed by the chapel many times that week but I never had time to stop. The opportunity seemed right so my husband and I sat in the little chapel. It was round, the ceiling had tiny lights that looked like stars, and the lighting changed over the course of ten minutes or so until all the lights dimmed and the tiny stars seemed to twinkle. I admired the quaint little room for the ten minute round of lighting changes. As the lights went from dark to light, I felt a familiar presence I hadn’t felt in a while. It was the feeling of the most loved of friends. It’s the one friend that knows me like no one will ever know me and loves me more than anyone could ever love me. It was the presence of the Lord.

I have always thought of myself as a woman of great faith. I had inspiration to give to others in their times of need and I believed God could cover and heal any hurt, but for the past seven years, the hurt in my own personal life had grown and finally gave way to more doubt than unfaltering belief. Since my son was diagnosed, everything became more difficult. The older he got, the harder it was to deny what the disease was robbing from him. He has been denied the opportunities that naturally come to other little boys his age. Despite it all, my husband and I continued the same plans to grow our family as we had planned before either of our boys were born. He and I were blessed with our two daughters. Our life was indeed a mixed bag of blessings and sorrow. After his diagnosis, we would be blessed greatly with things like when our girls were born, but were faced with things like mounting medical bills that strained our finances so greatly that we’d barely were able to afford groceries for the month, if at all. Life felt more like a rollercoaster than the dream we had once envisioned.

Then I got sick. Many probably thought I became incredibly selfish when I anxiously wanted to find a cure for my Rheumatoid Arthritis when my little boy was still suffering. I may have been. I had spent the last seven years fighting for him and I didn’t want a disease to change that. I also didn’t want anything to take me from him, or any of my other children. I wanted to be here to experience the joys and sorrows because this life was meant for me and no one else, despite how much I wanted to rid our life of the lows we frequently experience. I wanted so badly to assure my place on this Earth with my family, yet my faith was weak. I didn’t understand why I had been handed this illness in addition to everything else we were given. “Why Lord do you give me a disease that is wrecking my body when you know I have a son with epilepsy? Have you forgot I NEED to physically assist him?” Enough was enough and I could not understand this cruel addition to our already full plate. I had no encouraging words of wisdom or anticipation of His healing. I felt lost and alone and I felt like He had abandoned me.

Many people can quote words of wisdom like I once did, or jump out of bed with boundless enthusiasm and a positive outlook when their life doesn’t feel like a constant tug of war. It amazed me how many people became judgmental and claimed “they would have done it better”. It’s like the first time parents who sit and judge those who already have children, claiming they will get it “right” just to eventually find out that parenthood isn’t about getting it “right” as much as it is about doing the best you can. Once someone is no longer sitting on the sidelines but rather in the situation, the answers aren’t so clear and it isn’t as easy as once thought. This is where compassion and understanding grow. It grows out of the times we are at the top of the rollercoaster of life staring down from the top of the hill almost sick with the anticipation of the next steep decline. It’s when we are facing fear, and maybe the unknown, that we possibly have our best understanding of those people we once judged. To be honest, I don’t like the person I once was, I lacked compassion and understanding. I still don’t like many of my own qualities and I know I have a lot to learn, but I do know most people only desire understanding. So this was my life; I felt like the Lord had abandoned me, I feared constant judgement, and all the while my disease, as well as Aiden’s, was getting worse. I was sick of the rollercoaster and wanted off.

One of the worst days I had this last week in Texas was the first day we were admitted into the Epilepsy Monitoring Unit. We had been running nonstop since we left home. I was already hurting but when I laid down in our son’s room (on the tiny pull out sofa barely big enough for Doug and I), the pain I was already in got much worse. Nothing I could do was enough to ease my pain. my husband rubbed my hands and wrists until I fell asleep but I eventually woke and crawled into bed with our son. His hospital bed allowed me to sit up a bit and we were already playing musical beds as we adjusted to our new surroundings. There is something more than cuddling next to him that gives me comfort. I feel like I have been allowed to understand him more since my own diagnosis, and maybe he understands me, you never know…  It is a blessing and a curse because I often wonder if he feels pain like I did that night, yet he struggles to communicate. Now I am more aware where I wasn’t before because I have been allowed to suffer. My eyes have been opened to many things since I now physically suffer.

So that afternoon when I felt the Lord’s presence so strong, I was reminded that we aren’t guaranteed an easy life. Many children in that very hospital were facing much more than I. You don’t have to be a Christian to realize this. Nowhere are we told life will be as we wish but we are given one gift, that is life itself. Life is precious. I need to accept that my life will never be free of pain, physical or emotional, but I am given the opportunity to wake up each day. Some would finish this by saying “it’s what you decide to do with it that matters”, well, I disagree. I often don’t have a choice what I can do with my day. It has been at the mercy of one disease or another for over seven years now. I just can’t wake up with a will to conquer over my disease. I can’t will my pain away anymore than my son can stop himself from having a seizure. We deal with what we can’t control first and then we decide what we can do from there. Things don’t change just because we want them to change, so reminds me of my need for people and a God who understand.

My fear of my disease has been mostly about my own fear of death. Although my faith teaches me that there is more to life after death, I was afraid. I began to allow this fear to control my faith. It was a reminder of Jesus’ prayer in the garden before his own death that allowed me to once again embrace my faith. Jesus, knowing the outcome of his own death and what it would accomplish, still agonized over it so much that he sweat drops of blood. Whether this is a metaphor doesn’t matter as much as the fear even he had over the events before him. God wanted me to know it’s okay to feel unsure of what is before me.

My son and I will still struggle but we will do it together. The path we face is unclear but we are reminded of his presence in quiet moments in a small room with twinkling lights or through people put in our lives for a reason. We are either on the sidelines watching the rollercoaster of a life someone else is living or we are in the front seat of it, it’s the understanding and unconditional loves that helps us get through because you will never know when you will be in the unexpected. All you have is right now, the precious life you are gifted. I’m going to take it, pain and all because sometimes pain is the only way God saves us from ourselves. Pain is a despised beauty that can shape our understanding and allow us great compassion. Just because it isn’t understood doesn’t mean it has no purpose. I’m grateful I still have today to learn.

*d*

Keep Your Goals In Sight…Especially If Your Goal Is The Bathroom

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I was recently pretty sick and though the majority of my symptoms are gone, I still don’t feel 100% like myself. That’s probably due to the root reason for my illness. My mind. Not that I’m saying I’m sick in the head…wait, maybe that is what I’m saying….

So, for as long as I can remember, I’ve had a sensitive stomach. It wasn’t until a few years ago that my weak tum-tum got labeled as irritable, as if it were a fussy infant or a grouchy elderly gentleman.

Grandpa Simpson

After a series of tests, from food allergies to the most undesirable ‘oscopies, my condition got me lumped into the Irritable Bowel Syndrome category. I say lumped, because it seems like this diagnosis is what you get when there’s absolutely no reason for your symptoms, and yet, there they are. Basically, what it boiled down to was that it was all in my head. Now, as a long-time sufferer from this apparently mentally-driven illness, THAT IS THE LAST THING YOU WANT TO BE TOLD. It sounds messed up, but you almost hope that they find an ulcer just so you have a reason for feeling so awful. It’s not like the Dr. said verbatim, “You’re making this up in your head,” but it still felt like it was my fault.

Anxiety has plagued me as far back as the single digits, with depression joining the party in my teens, and apparently, when it runs amuck, it can cause major irritability in your guts. So, I literally worry myself sick. And trying not to, only makes me think about it more, and makes the rumbly in my tumbly rage on.

True story.
True story.

Aside from taking more pills, there doesn’t seem like a way to escape myself. I’ve considered meditation and heard good things about it. Maybe I’ll give it a try. I just can’t imagine turning off the unending movie in my head.

I know I’m not alone, even if the subject matter is a little, um “unmentionable.” Well, I’m mentioning it. And not like the cute little cartoon bowel in the commercial,

Yeah. No.
Yeah. No.

like the raging, angry, week-ruining, temper-tantrum-throwing jerk that it is.

There we go.
There we go.

The reason for this most recent flare-up? Well, I’m working up the courage to write it down…because once it’s down in writing, it becomes more than just a random, fleeting thought zipping down the interstate of my mind. Next rest stop: 50 miles. Uh-oh.

#WINNING
#WINNING

~L~

Down, But Not Out

I’m heading into week three of being sick…two different illnesses…and week three of no aerobics. This is where I planned to say, “SEE?!? THIS KIND OF THING HAPPENS EVERY TIME I TRY TO IMPLEMENT A HEALTHY ROUTINE IN MY LIFE.” But, I won’t, well, except where I just said it anyway. I’m not going to let this throw me. When I’m better, I will get back at it. I refuse to see this as a ploy by my bod to make sure I never whip it back into shape or a sign that I am allergic to exercise. It is what it is and I am not going to beat myself up about not being able to jump around and get sweaty right now.

I have plenty of other things to worry about so I choose to remove that from my list.

~L~

If a Photo Tells a Story

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Here we are, my youngest son and me. It was as uneventful as it looks. We were waiting in the van for Daddy to come out of the grocery store. My buddy said he didn’t want to go in so he sat with Mommy. He did get anxious while we waited so I decided to distract him with one of his favorite activities, taking his picture. “Cheeeeese!!!” he said while sporting his best cheesy grin. Of course I didn’t like how I look in any of the photos. My hair has been falling out at breakneck speed lately. I also noticed his hair was getting a little long. I am glad his medication hasn’t been doing to his hair what my medication has done to mine. Anyway, he was overdue for his haircut. Although, he’s been doing better at getting a haircut, I thought I’d let him go a little longer before we’d give him one. Autism and haircuts don’t mix well at our house.

That’s how life is for us, things like a haircut that seem simple usually have a story behind it, like this photograph. What you don’t see in this photograph is how swollen and painful my knees were that day and how bad my shoulder hurt. My Rheumatoid Arthritis was causing me a lot of grief. The only other time I had left the house that week was to pick up my oldest son from school. By this time, I was anxious to find any reason to leave the house.

Leaving the house wasn’t what it used to be and I was wondering if I should apply for a handicap placard. You see my cutie in this photo has had a rough life. Here he is at the end of a very rough summer. He has been weaker than usual because his seizures had been increasing. He didn’t want to go in because he had a few seizures that day and he was weak and a bit tired. I wondered if I should get a placard for the times he may want to go in and a long walk to the store would be too hard for him. What about me? Some days I can barely make it down my hall to the bathroom but I worry because neither of us “look” handicap. I had a crazy vision where someone deciding to do their own sort of “justice” was yelling at me for parking in a handicap spot as I unload my kids since I may not give the world some sort of visual confirmation of our need for a placard. There is no membership card for a chronic illness club. I guess it’s best I wait. We’d be okay a while longer, I guess.  I try not to take the kids out alone, it’s too hard on my body. So I thought about another topic; how sad this summer was and how we really didn’t do anything fun. I apparently wasn’t being very positive on this day.

My thoughts were interrupted by my son spitting. Yes, he has a bad habit. I’m not surprised. He has autism and epilepsy, and I have Tuberous Sclerosis to thank for all of that. He does things to make his Mom squirm, like most kids do, it’s just a bit harder to convince him to give up a bad habit. I try to be as patient as I can because I know he has a lot going on. I am not the master of patience yet, but I was getting a lot of practice in the parking lot this day.

He wasn’t interested in much that evening, including his iPad. When we are waiting for a long stretch I usually play a movie for the kids. We got this van specifically for the DVD players. Unfortunately they stopped working. Not great news for me. It’s helpful for times like these when I am at the receiving end of spit. There would be no way we’d be able to fix the DVD system so I tried not to think about it. It would just make me mad. I pulled out the next best thing to the DVD players, my phone. Technology can sometimes be grand and seeing himself on my phone is always grand for him. We took our picture together. We are two peas in a pod, he and I….

The course of my disease is eerily mirroring the one he has already taken. He took a medication that required eye exams every three months to check for vision loss. I am supposed to do the same but we don’t have vision insurance, so I am hoping for the best. He moved on to another medication after that one failed. It is used to treat cancer. He has to have labs done every three months to make sure the rest of his body is okay with the medication. I’m right behind him with Methotrexate and looking to see if I can start, and most importantly afford, to continue to take it after the first of the year. With all of the gloomy thoughts, I’m thankful his smile can put a smile on my face.

I flipped through the photos we took and wondered if my face looked a bit more round than usual. I had been on predisone for a while and I’d rather blame the medication for any noticeable fullness in my face instead of my late night snacking. I noticed how tiny my son looks in the picture. We were at the store so his Daddy could go in to buy him his breakfast shakes. It’s the only thing he will consume consistently. We buy them to supplement his diet. It isn’t cheap but it helps him maintain his weight.

That reminded me to check our bank account. “I hope there is enough in there to buy what he needs,” I thought. I sighed and took a long look at the summer sun. It will be sad to see it go. I wished we both felt good enough to enjoy it. We did miss a lot but we do have this picture together. We can certainly look the part but rarely does anyone really know what’s behind a photo.

There is usually a story behind our photos, as there are stories behind many things in our life that no one knows about. I’m smiling but I am always thinking about our health, money, the future, and sometimes regret. I try not to be negative but it’s hard not to be on occasion. The great thing is that he can always find a way to remind me how to be happy despite the flurry of thoughts that often bring my spirits down. It’s as simple for him as taking a photo with his very best smile. Although it won’t be that easy for me, I am certainly going to give it a try. Someday we may look back at this photograph among others, and I want him to know there was a genuine smile on my face, and he was one of the reasons why. I am blessed for every last moment, even uneventful ones like this time when he and I can take a moment, forget our troubles, and smile. “Cheeeeese!!!”

*d*

More Than Just Coffee

Lately I have been wondering if I have been truly in love with something or just the idea of that something. For example, I decided at our last monthly grocery run that I wanted to try to be a coffee drinker. It isn’t that I haven’t had coffee before, I was one of those people who got a coffee maker for a wedding gift ten years ago and used it maybe twice. I love going to our local specialty coffee shop and indulging once a year but making my own wasn’t anything I was ever interested in. Now I thought I’d give it a try for a number of reasons; I would rather get a small boost of caffeine from a small cup of coffee versus pop first thing in the morning, my RA has had me running on fumes, and I love the smell of coffee. I have been spawned by long and large group of coffee drinkers. I would smell the lingering aroma of it from home to the home of a relative, and every Sunday morning at church. The Baptist couldn’t wait for a coffee fueled sermon followed up by coffee fueled fellowship. The thought had occurred to me that I had an emotional attachment to the smell, and not the taste. It’s probably true. We were between housing when we lived with my eighty-something year- old grandparents who brewed coffee in the morning, reheated it in the afternoon and anytime they got a chill, which was quite often for my late grandfather. I miss him dearly and my decision came upon the heels of a year since his passing.

So we’re at the grocery and I stopped and stood in the coffee aisle taking in my limitless possibilities. I admit that I was a bit shocked by the number of choices I had and I am not a decisive individual. My son cheered me on as any bad influence of an eight year-old would. Apparently drinking coffee is a huge thing for third graders at his school…. So after telling him to stop taking out every interestingly packaged coffee and coffee mug for his new habit, I chose a very girly vanilla cupcake flavor coffee. Heaven forbid my coffee would actually taste like coffee. One package of coffee filters and a over indulgent container of chocolate caramel creamer later, we were headed home.

I returned home more than eager to brew my first cup, but where was that coffee maker? I had a frightening thought that I may have pitched it in our last move. Why not? I never used it anyway. I kept frantically searching as I secretly began to repremand myself for throwing it out. I don’t like throwing anything out for this very reason, I’d have to buy another one and I know that wasn’t going to happen anytime soon. Finally, I found it! But then I didn’t know how to use it. Luckily the people at the girly coffee factory want to make sure all of us novice coffee drinkers could make a cup so we could thus get hooked. Great idea! I got it ready and began to unload groceries as it brewed. My husband thought I’d surely made it wrong when it only took a few minutes to brew my quarter pot of coffee. Then I had to find a cup to put this newly acquired liquid gold in. I certainly had some coffee cups as I am avid cocoa drinker in the winter months. One coffee cup is all I found. Darn. Then by chance I found an awesome mug fit for a coffee pro. I washed it, poured my first cup, and it was weak. I made it too weak. I was going to need more zing than that keep me going during the day. The second cup was amazing and I felt special sipping out of my fancy cup. For the next few mornings my coffee was already auto brewed by the time I came downstairs. I had a bit more zing in the a.m. and I began to see why people insisted on starting their mornings with this stuff. Then the disappointing happened, I started having terrible heartburn. I cringed when my mom suggested it was the coffee. After all that trouble, it was causing me heartburn that could be mistaken for a heart attack.

This afternoon rolled around and in the true spirit of the Midwest, it was below normal temperatures and a hot cup of coffee sounded great. I brewed it and it is still sitting there an hour later. I haven’t touched it. Do I dare chance the feeling of looming death for my newly acquired taste? Today I may be satisfied with my emotional attachment to the smell.

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I am more disappointed that I once again can’t be like all the other “cool” people and start my day off with a jolt of girly coffee goodness. I can live with reducing my consumption but what about that smell? It reminds me of home, loved ones, and a church family that felt more like my real family. Maybe I need to think a little harder about sporadically falling in love with an idea because it seems like those ideas for me don’t pan out in real life.

My daughters have been playing together more as my “baby” is now a year and a half of busyness. She follows her big sister with her ride on toy, they play with the tea set together, and they frequently say “Bye!” as they leave for their pretend jobs . It makes me wonder what it would have been like if I had a sister. I have been in love with the idea of a having a sister forever. I have seen cute little posts on social media comparing a woman without a sister to one without an arm or some other nonsense. Like I had a choice about how my family dynamic played out. I hoped I’d someday have that faux sister that I could go shopping with, call on the phone, and we’d celebrate all of life’s joys together. But from what I see, it isn’t as glamorous as I had imagined. Sisters fight. I don’t like to fight. But I still wonder.

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And then I wonder about all the things I may have missed out on; a college degree, a full time job, and all the dreams I watch others live out. Those notions are so much harder to live out than buying a four dollar package of coffee off the shelf. So I learn to accept life as I have it. I have notions about what I think life is all about and no one knows what my life is really like. So I keep dreaming about those little things. Are they what I really want or do I just like the idea of it all?

I am awful good at looking idealistic. I often seem like a pillar of strength or maybe a beacon of hope, but I complain about the circumstances out of my control just as well as the rest. Why does my coffee have to give me heartburn? Why am I not worthy of meaningful friendships with other women? Why am I sick? Why are we drowning in medical debt? Why are we not living out this dream life? And on and on….. The truth is, things aren’t easy. We spend time doing a lot of things we’d rather not. Last night we spent three hours preparing and sorting paperwork to fight social security. Yes, they want to take back payments from two years ago just in time for the holidays. My desk is full of paperwork only special needs parents or the chronically ill can appreciate. “Here is your half ton of paper work Mrs. M.! Good luck with all of that because life understands how easy you already have it.” Yes, nothing is easy or as it seems. I can be joyful in the face of adversity but I can be equally as disappointed in those things beyond my control. I just keep trying. I keep smiling and I try putting my faith in things that have a special place in my heart whether it be a friend as close to my heart as a sister or my husband who spends three hours on the floor digging through paperwork. As for the coffee, the trouble was almost worth that smell of home but then again I guess I can find a candle for that.

*d*

Living in the Gray

It’s warm today and she’s resting on her beach chair. The sun warms her face as she quietly hums the song coming from her headphones. The beach is noisy today but she’s trying hard on focus on this relaxing moment. She concentrates on the cool air that wisps across her toes and despite the noise, she drifts slowly off to sleep.

“We’re done,” cuts in a voice that interrupts her music and startles her awake.

“Thank goodness,” she sighs as she begins to move forward and out of the M.R.I. machine. Her daydream was over. She felt fortunate to have drawn her focus away from that confined and noisy space. But a feeling of disappointment came over her. She wished her moment away wasn’t just a dream. In fact, the last few months for her have been like living in a nightmare.

A few months ago she began to feel sick. She was tired, her body ached, and she felt like she was coming down with the flu. She took a couple days off work and when it was time to return, she still didn’t feel better. The weekend passed and she still couldn’t shake what she thought was the flu or some sort of virus. She returned to work and held strong, hoping her symptoms would improve, but they never did. The symptoms and the addition of widespread pain was beginning to disrupt her life. She couldn’t concentrate at work and by the time she got home, the extreme fatigue and pain kept her from keeping up with her normal responsibilities at home. Deep in her heart she knew something wasn’t right.

It began to slide into every aspect of her life and she knew she needed answers. She was disappointed to learn that when she went looking for answers, she’d only end up with more questions.

“So, what’s wrong with you?” she would be asked.

“I don’t know.”

“What do you mean you don’t know? Didn’t you just have an M.R.I.?”

“I did but they couldn’t find anything,” she said feeling defeated.

“All that money spent for nothing?” Her heart sank hearing those words. She had hoped others would see her quality of life would be worth the investment.

The time and money she invested in searching for an answer was only feeding her increasing guilt, but she kept reminding herself of why she was searching. She often had to keep going even when she felt like the doctors had also given up.

“The doctor gave up on me when I didn’t fit the diagnosis he had in mind, please don’t give up on me too.”

No one wants a diagnosis, but everyone deserves a chance for treatment and hope for a better quality of life. Those living in the gray area between health and a diagnosis are lost. They are always searching, researching, and asking questions. They are often submitting themselves to tests and seeing various specialist when they know the financial strain and time consumption involved. They are not crazy, their symptoms are not in their head, and yes, they are suffering. They are like Erin in my story. She is an intellegent, loving mother of two who works for a living. She is active in the lives of her children, but she also knows something with her health isn’t right.

The woman in the story could be my own mom who searched for 55 years before receiving a diagnosis. She could have been me. I knew something wasn’t right with my own health for over ten years. After various doctor’s appointments and all of the same tests and questions, I found my own diagnosis after plenty of research. My diagnosis finally came after I asked my physician, “Could you please test my blood for Rheumatoid Arthritis?”

People seaching for a diagnosis want you to know:

I am suffering.

I do need answers.

I need support and understanding.

I need help.

Do not judge me.

Don’t ask me questions about my search and then cut me down.

Please don’t offer alternative healing until I have a diagnosis.

Don’t tell me it’s all in my head.

Listen to me.

As for Erin, she is going to keep searching because she needs answers so she can have hope for a better future, for herself and for her children. She desperatly desires the chance to experience life without the disruptive symptoms attached to an unknown diagnosis. She deserves to get up each day and know what she’s facing. She deserves a chance for a fair fight. She and all people living in the gray zone of the undiagnosed want and deserve the same.

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A Boy Fading

It’s the first day of school and he is worried about making friends, finding classes, and navigating a world that is literally closing in on him. You are nervous as you watch him prepare for his day even though you have seen him do it many other times. Your son is different. Your son has an invisible disease that is robbing him of his sight. You have to let him go although you know he is going blind. You won’t wave overzealously to him as he smiles eagerly at the stoop of the school. No, you will hide your fear with a haphazard smile and he will crack a cautious grin and wave to you anxiously. You are not sure if you will experience the happy anticipation of hearing how wonderful his day was because his previous school proved to be a terrible experience. You pray a new year and a new school will be the right decision for you both. The question, “Why?” rings in your ears frequently and today is no exception. You know the answer, it’s because he was born with this genetic condition that is stealing his vision. And then that same sickening feeling wells up from your gut and you try to stop yourself from revisiting the same internal battle that steals your sleep. You know the conclusion is always the same, life hasn’t been fair.

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When it comes to children diagnosed with a disability that robs them of any physical or mental capability, it is often hard to see the silver lining. The hard truth remains the same, it isn’t fair. It is unfortunate that in our supposedly accepting society, people often prey upon the weak much like a lion attacks the weakest of a herd. Too many continue to act like animals when encountered with someone who shows the slightest fragility. School should be a safe environment for every child but instead many children are teased, bullied, and excluded based on differences. Parents often have to decide if they want their child to continue an education at a school that is adding unwanted stress to already stressful physical or mental health issues.

Yet, it happens every day and the above llustration is a very certain reality for a little boy living with a rare genetic disease. His name is Avery, he is 10, and he was born with a condition called Retinis Pigmentosa. This inherited disease causes severe vision impairment by retinal degeneration of the eye. During the course of the disease, the cone and rod (photoreceptor) cells die which causes a decline in vision. The landscape of life for individuals with this disease slowly turns into a confined view of reality. Life that was once bright and colorful slowly turns into a channel of black.

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Even his favorite things are fading from view.

Avery is as bright and as inquisitive  as any other child his age. Through it all he has tried not to let his disease define him or what he wants to accomplish. But, Avery’s vision is slowly fading and with it, it takes the spirited independence of a little boy. He no longer rides a bike or a scooter because his disease has progressed enough to make these iconic childhood activities risky. At his young age, he now has to be more cautious because even walking into a new environment creates challenges.

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Sometimes he feels very alone.

And so brings us to Avery’s first day at a new school. He leaves behind students who heckled him for understandable clumsiness associated with his disease, parents who allowed and contributed to the bullying, and impatient teachers. He now has to familiarize himself with a new school, make new friends, navigate a completely different environment, just because he was born with an incurable disease. That is when unfairness is caused by the actions of those who made him to feel unwanted over no fault of his own. Disease and disability are never an elected decision of life, but the unfair treatment makes it seem that way. Teach your children about acceptance. Teach them to love one another regardless of differences. Even a child can be a bright light, and they too can make a difference in someone else’s life. And yes, a bright light for a child whose world is growing dark.

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Avery with his brothers.

If you wish to support this little boy and his family’s difficulty paying for his medical care, please visit their page:
http://www.gofundme.com/uqm3u7f3u

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