An Invitation

I want to invite you in to my life. This will be extremely difficult for me. I am a private and sometimes quiet person but what I have to show you is important. It is a glimpse into the life of someone who is living with Rheumatoid Arthritis and Fibromyalgia. I also have four children and one of them has a disease called Tuberous Sclerosis Complex. He is multi-disabled. Among several secondary diagnoses, he has epilepsy and autism.

I want to capture my life in pictures to put a face to invisible disease. I want to give a voice to others who also struggle silently. Many people, like my family, face difficult daily challenges so I hope my story will serve as a reminder to be kind to others. You never know what challenges someone else is facing.

This is how you might see me in public on a typical day.

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(I say might because with four kids, I don’t always have a lot of time to apply make-up and fix my hair before I leave the house.) Yes, I “look normal” yet I am very different. Here is life from my perspective:

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On this day I had another rheumatologist appointment. I was brought back to the exam room and four needles were arranged neatly on a tray. I have never been too excited about needles and this had me nervously thinking about the five injections I had already received since the beginning of the year. I suspected these syringes had something to do with the problem of pain in my shoulders the Dr. and I discussed at my last appointment. I tried to prepare myself mentally for what was to come. Waiting thirty minutes gave me time to doubt accepting these additional injections, but I reluctantly elected to take them in hopes of increased mobility. Unfortunately, it landed me in an ambulance with a suspected allergic reaction. It also altered how I could be treated in the future.

A few short weeks later the only positive side effects of my shots had worn off. The anti-inflammatory properties were gone and my RA took over. I was experiencing my first RA flare. I could describe it simply by saying, “it hurt to move” but I was unprepared for this kind of pain. I was shocked, reeling in pain from the smallest movements. Fibromyalgia gave me a secondary blow as it pained the area around the joint effected by RA. In a matter of weeks, I went from a 34 year-old mother of four who was keeping up with her children, to a woman unrecognizable to even myself. I revisited the rheumatologist and began physical therapy in hopes of any relief. At the advice of my physical therapist, I purchased a rollator. It would help with my mobility when the pain made it too difficult. My hands hurt so bad that I could hardly grasp the handles. My body retaliated against me and it hurt to stand up straight.

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At the peak of my flare, the morning hours gave me the most pain and I had difficulty getting out of bed so my husband began to help me….

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He helped lift me to my rollator….

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And had to help me on and off the toilet.

My knee was so full of fluid that I couldn’t get my leg over the bathtub. My hands hurt so bad that I couldn’t wash my hair, let alone squeeze my shampoo container without assistance. He waited outside the shower to help me wash my body and hair and help me in and out of the tub.

Each day would carry on and each night I would cry out and wonder, “Where is my life?!”

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Even my hands swelled to the point of making everyday tasks difficult, so I started a small dose of oral prednisone. I eventually had to take two a day. It has it’s own unpleasant side effects, like sweating and mood-swings, but it helped me function. It was enough to reduce some of the problematic swelling but I was still in constant pain.

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It wasn’t the only medication I was taking to help me through my flare…. and there were more side-effects…. My legs were bruised from taking Naproxen. I was also getting headaches from my pain medication.

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My son’s epilepsy didn’t wait for me to feel better. Sometimes he falls at the onset of a seizure. After, his limbs are immobilized and he is frequently exhausted. His seizures are physically demanding for both of us. I often have to lift, hold, or carry him to a safe place before and/or after a seizure. On this day he had a two minute seizure that took over his body. He could not move so he begged me to lay him in bed. It was hard for me to carry his worn body to his bed. We were both exhausted. It was all too much and I sobbed as he lay there.

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It was no surprise that the physical demands of motherhood and my special needs son began to take a toll. The pain became intense in my shoulder so the doctor ordered an MRI. I found out that RA has torn my shoulder to shreds. The six paragraph explanation made for interesting reading. I have refused surgery as 12 weeks of recovery and therapy isn’t realistic for a mother like me.

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(I couldn’t even get the full summary in this screen shot.)

Another doctor appointment. Here I am waiting to see a pain management doctor. Nothing seems to be as cruel as living with chronic pain. It’s a daily struggle that I am desperately trying to conquer.

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Another bad day for my son’s seizures. On this day he fell to the floor before I could reach him. My leg had been so full of fluid that I could not get to him before the seizure knocked him to the ground. Although I was thankful he was inside and on carpet, the guilt of being unable to reach him before he fell ate away at me. He is pictured here after he finally stopped shaking. He once again had no control over his arms or legs so I had to lift him to the chair and sit with him until he could move.

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I pray for days when we cuddle just for the sake of cuddling, not because a seizure has prevented him from moving his own body.

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I may not be strong but I am determined to hold my baby when he needs me…

Between my special needs child and I, we spend a lot of time at doctors’ offices and in hospitals. What’s startling still is the realization that we will never get a financial break from the burden of disease and disability. It’s disheartening when my medicine cabinet is fuller than our pantry.

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In the evenings the kids often find me elevating my leg. Since my scare with steroid shots, I have been trying to allow my body to absorb the excess fluid naturally. It hasn’t been easy and I often need to elevate it to find relief. I also have a cyst on the back of my knee that may never go away, or so I have been told. On this night, my daughter found me, and I’m glad she did.

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Most of the time I look like a normal mom. I snuggle with my babies.

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That’s my family posing for lots of pictures during a rare trip away from home.

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I can also be found at the bowling alley with my family although you won’t see me bowl. My hands hurt too bad to pick up a bowling ball and my body hurts too bad to roll one down the lane.

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….but I am still much different. I know, it can be hard to see. And although I am allowing a glimpse into my life in hopes of changing the way others perceive it, there are still those remaining invisible facets to my life that are the most important.

In the early morning hours during my RA flare, my husband got out of bed and helped me do things he never would have imagined when we wed a short ten years ago. The jokes we made about caring for each other in old age have abruptly ended–just like my once healthy youth. And I realize in my worst moments, love and the affectionate care of my spouse intertwine much like his arms embracing my weak frame. In our darkest and hidden moments, we find love. It triumphs over every minute I wake in pain and he comes to my side, over every seizure that crushes the delicate body of our little boy, and any doubt that we will make it through every last setback together. So when I am asked, “How do you do it?” I may not always have the best answer but I do know I will make it because I don’t have to do it alone. I know I am loved unconditionally. And that is the most important thing you should know about my story…true love is not conditional…true love sees past differences, disability, fear, sadness, and disease. Love is my husband looking past my suffering and weakness and still seeing the woman he loves. Love is the confidence I have in his fulfillment of the promise to love me “in sickness and in health.”

Today, I am getting better and working with my specialists to find the right plan to manage my disease. This will not be the last flare I will see but the goal is to reduce the number of them, manage my pain, and slow the progression of my disease. The most important goal for my health is to be a productive wife and mother. I most likely have a lifetime of care with my special needs son and I want to have that privilege as long as my health allows. We also continue to work on improving his life despite his disease. It has been hard but I look forward to every moment I am given, good and bad. The good times give me hope and the bad times allow me an appreciation of them. And love sees me through it all.

*d*

After The Rain(e)

I was kind of a cute kid.
I was kind of a cute kid.

My middle name is Raine, pronounced just like the precipitation. (My mom’s always been a bra-less, free-thinking, interesting woman, to say the least.) I hated the name when I was a kid—probably until sometime in high school—most likely because it was different. Being different was highly undesirable then. Now, it doesn’t seem to matter. I’ve embraced a great many of my quirks and decided I don’t care what most people think. I understand that a great amount of nastiness in people springs from jealousy and all I feel about that is pity. And the truth is, I don’t remember anyone actually making fun of my middle name. If they found out what it was, I’d get “That’s weird” or “That’s cool” but nothing glaringly negative. It was just the fear of that potentially awful reaction that kept me tight-lipped about my middle moniker.

To this day, when my mom or granny says my first and middle name, there’s a notable southern twang. It’s like it was built into the two-word phrase. My granny was born and raised in Kentucky and for a time, my mom worked there on the horse farms. It’s where the father I’ve never met lived. Where he probably does still.

When I was in elementary school, I remember visiting “down home,” the farmhouse Granny grew up in and where her brother Fred, or Uncle Heavy, as I knew him, still lived. I will always remember the lack of an indoor toilet more than anything. And the fear of sitting over that black hole in the spider infested privy. Now, my memories of him are kind of hazy but one thing that I remember in detail was the way he liked to tease me. I’m sure he picked on me about lots of stuff but what I really held onto was the way he called me Thunderstorm. Lindsey Thunderstorm, instead of Lindsey Raine. I remember constantly correcting him, getting more and more frustrated when he refused to listen. I can hear the growls and indignant retorts now. Even then I was a hothead. Maybe he saw that in me. Maybe he was just trying to get a rise out of me. I’ll never know since he passed away before I was old enough to wonder about it.

Uncle Heavy
Uncle Heavy

What he couldn’t have known was just how stormy I’d end up. Along with some unfounded rage issues, I fight depression. It’s hard to pinpoint when the clouds of this invisible, torturous illness moved into my life but when I think back, I’m inclined to believe it was around puberty. Something changed chemically. A switch was flipped. Couple that with the already tumultuous experience of being a teenager and you have a recipe for some fantastic highs countered with incomprehensible lows.

I was angry. I was sad. I lashed out. I earned another name I didn’t care for. Bitch. The worst part was, I, as well as everyone around me, didn’t see what was happening. I knew I was miserable but I didn’t know why. In the beginning, Mom liked to attribute my moodiness to the birth control injection I’d opted to get as a 15-year-old instead of the pill. That very well helped elevate my misery—as well as my weight, which did nothing to improve my mood.

After my junior year in high school, I dumped the goofy, ponytail-having-boyfriend and switched to the pill for contraception. I felt like a different person, for a while. The clouds never fully parted. It felt like the darkness was always there but as my hormones leveled out, I learned to hide it. More than Geometry, Algebra, or English, I mastered the art of acting. I learned quickly that no one understood why I might feel gloomy and introspective. So, I hid it. But not for long. The driving rain from the storm raging in my head shoved me farther and farther into the darkness.

All I really remember about my senior year was prom, being inducted into the National Honor Society, graduating, and the weight in my heart, the blackness seeping into every corner of my mind. And one other moment. I wore a perpetual frown and often put my head down on my desk in school. “Whatever” had become my go-to response. The once interested participant in class was obviously gone, traded-in for a heavy-sighing, eye-rolling lump. If anyone noticed, no one said anything. No one except my college-prep English teacher. I’d always really liked her, having her my sophomore year as well. She supported my writing and love of books and was a generally fun person to learn from. Senior year that changed. At one point, our CP class had seventeen different projects/assignments we were working on simultaneously. I understand that she was trying to prepare us for college, hence the “college prep” course. But when I learned that the general English students were playing board games during their class time, I was disgusted. I was already struggling to get out of bed every day and her harping and piling on the tasks was enough to make me hate her. My loathing didn’t go unnoticed, even if my depression did. After a particularly snarky reply to some question she asked me, she followed up with: “Why are you being such a bitch?” In front of the whole class. All I could do is shrug and collapse in on myself, staring at my desk.

I know I deserved it. My attitude was terrible. For years after that, I didn’t like her. I eventually forgave her, like I’ve forgiven and continue to forgive those that don’t understand.

At some point during my last year of high school, my mom, having a Bachelor’s in Psychology and a keen perceptiveness, had finally taken me to the doctor, being the only person who realized I might have a problem beyond being a moody teenager. Though I remember very little about the actual appointment—I went kicking and screaming—I know nothing was prescribed. The magic number for receiving anti-depressants is 18. I graduated at 17. When I returned to the doctor in August after my birthday, I was placed on Zoloft. To this day, I find it ridiculous that one day as a 17-year-old I couldn’t have the medication, and the next day as an 18-year-old, I could. It might not have been literally overnight, but the difference was mere months. I suffered through my entire senior year with no help, medically or otherwise. It’s upsetting to think about it now and to realize someone else is probably facing the same thing.

I’d like to say that things got better after high school, that I grew out of the funk so many people assumed I was in. But I’d be lying. And though I’ve gotten so good at lying about how I really am, what I’m really feeling, I’m tired. It’s exhausting pretending you’re fine because trying to explain the pain inside to most people is impossible.

I’ve spent the years since graduation in varying states of depression and on multiple medicines. I’ve hated the detached feeling most of them cause and on several occasions, I’ve stopped taking them. While on them, it’s easy to feel like I’m fine, that I can handle my mentality. But every time I walk away from them, the darkness eventually overpowers me. It’s made it clear that it will never go away.

Now, I feel like I’ve come full circle as I’m back on Zoloft. After a roller-coaster ride of deep sadness, numbed passiveness, the inability to stop crying and crawl out of bed, sexual dysfunction, and sickening withdrawal symptoms, I’ve come back to the first medication I was put on. It had worked well then, but eventually stopped, prompting me to try something new. My doctor put me back on it since 15 years has passed and my body chemistry is completely different now. It’s also good for someone like me who doesn’t want the glaring side-effects or the extreme emotional deadness that some of the other meds cause. Luckily, it’s working well at a very low dose.

The key word here is "less." Somethings never go away completely. ;)
The key word here is “less.” Somethings never go away completely. 😉

The last time I came off of my anti-depressant was terrible. At the time it was a pretty high dose of Effexor. The withdrawal was a delightful medley of dizziness, shaking, and weird flashes in my field of vision. I thought I’d stepped down slowly enough but apparently not.

I was sure I never wanted to go back to the drugs. I was sure I could handle the depression. It was during this time, and the many others where I was trying to be normal, non-drugged, that I had to put on the Academy Award winning performances. No one wants to be around someone who mopes around all the time or has mood swings that would make even a pregnant woman raise an eyebrow. No one wants to hang out with someone who cries all the time. About everything. Broken plans. Being late to an appointment. Watching a Campbell’s soup commercial. So, I would summon all my skills and be someone else.

When Robin Williams killed himself, I’d been off my med for a year and three months. I was struggling. I’ve never actually cried over the loss of a celebrity but the tears welled up in my eyes as I read about his death.

I probably would have cried even if I'd been medicated...
I probably would have cried even if I’d been medicated…

Not just for the beloved actor, so familiar he was like family, but for the man I knew had suffered silently for probably most of his life. My heart broke because I knew why he’d put on the mask. And I also knew why he’d left this life behind him.

Awareness about depression and other metal illnesses is growing, but it still feels like an awkward conversation. It still feels like I need to fake my way through my days and the discomfort of others is apparent when I actually bring up my depression, which isn’t often, for that very reason.

I’m not likely to try to step off of my medicine again. The coming off, the full-force depression that always returns and the going back on, have only gotten more difficult with age. I’m done fighting the fact that I need a pill to chase away the clouds. I realize it doesn’t make me weak any more than a diabetic is weak for needing their insulin.

When I’m on my med, it’s easier, but that doesn’t mean I don’t have moments where the rain clouds begin to gather. The difference is that I can pull out of the growing darkness and make myself refocus. There will always be a part of me that exists in the middle of a drowning downpour but I’ve learned to embrace it, to use it. It’s where my writing comes from—from the deep thoughts and emotional responses. It’s true I’m a more prolific writer when I’m not medicated but needing the medication is something I’ve come to terms with too. I’ve learned that there is no shame in using an umbrella to get through a thunderstorm—that after the rain, there’s often a blue sky.

After The Storm

~L~

September and the End of Life

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The red horizon was pressing up against the darkening blue sky. Wispy clouds floated along the cool air. Soon the grass would cool beneath bare feet. Now was the best time to experience the crisp air.

He would never experience another day like this. It was beautiful outside his hosptial window. It was September. My swollen eyes gazed drearily out his window and I imagined myself walking in the courtyard below, my bare feet making circles in the grass and my face toward the sky. The sun would warm my face and dry my tears. I would close my eyes and see the red of light and breathe in as I did many times on the hill outside his house.

I spent many summer days playing outside my grandparent’s house.  I would scuffle up and down the hill littered with stones along the edge of their house and down to the small pool my grandfather purchased for my grandmother. I would frequently put my hot feet into the cold water and my body would involuntarily pull back. I would dance my feet lightly on the water’s surface as I took in my surroundings. This was one of my favorite places to be. A creek ran through the back of the property,  while numerous trees, bushes and flowering plants, mostly Mother’s Day gifts to my grandma, lined the edge of a field. Well manicured grass extended in both directions and behind me stood their little house on the very top of a hill. They sold the house the year of my high school graduation and it has since gone into disrepair. Nevertheless, some of the best memories of childhood still reside there.

I couldn’t return there or escape to the space below so I stared across the sprawling garden and over to the stained glass windows of the chapel. I closed my eyes and wondered if I should enter and fall to my knees before the alter. I would kneel until my knees hurt and my back ached if God would just take this day away. How could something so terrible happen on a day a vision to the contrary? Could I get him away from his bed and out to the garden below? I wanted the sun to warm his face. I wanted him to feel the grass and experience more than the space between the hospital walls before he would no longer have the opportunity.  Maybe I could ask to move his bed next to the window. With multiple lines feeding his veins I knew it was impossible. His fingers were turning blue and his blood pressure was slowly dropping.

I had never before experienced the anticipation of death. It was awful and cruel. I told myself to be brave. I would stand at the window or wander down the hall in a futile attempt to collect myself and accept what was happening. I tried to fool myself into thinking I had been through plenty of hardship and could be an example of strength. My eyes would flit around the shocked faces surrounding his bed and I accepted the weakness we all shared. Every face was distraught and terrified. Many could hardly speak. I did not want to accept it but I pleaded for the day to end. My mind looped, “I can’t do this.” Then I would try to rationalize my thoughts so I could quickly return to his bedside. We had spent several hours watching him try desperately to acknowledge our presence despite his own agony. We knew the inevitable finish to this normally beautiful day was creeping closer with every tick of the clock. He stopped trying to speak and stopped opening his eyes. The clock grew louder and it became difficult to ignore amidst the deafening silence.

The awareness of death was strange knowledge. My grandmother paced the halls and nervously fidgeted. She could hardly stand to stay in the room and watch over sixty years of her life slip away. We prayed,  shared stories, and told him we would be okay. My mom tenderly cared for her father and only briefly left his side. She undoubtedly suppressed her own fear to make sure his hands were held, he was comfortable, and aware of her love. I wondered how someone who always took up such a large part of my life could be reduced to a small space aloft a hospital bed. We sat in a circle surrounding his bed, holding his hands, touching his feet, and crying until my mom raised her head from his chest and sad, “He’s gone.” It felt like we all exhaled simultaneously in disbelief and our breath lingered stale in the room. It was over and so was more than eighty years of a meaningful life. A part of me also died with my grandfather as happens with all those who share our lives. It was sad to think that his memories, experiences, and wisdom just died with him.

We stayed for an hour. My grandma started calling loved ones shortly after his passing. Her busy hands didn’t make a happy heart but it helped her deal with her new reality. I kissed his forehead and held his hand while he was still warm. His head was moist from fever. I told him that I loved him and hoped he would somehow hear me. This was one of the most defining losses in my life.

I have lost others I have loved. My uncle (my mom’s brother) died unexpectedly three years prior as did my paternal grandfather, but I was very close to he and my grandmother. I spent a great deal of time at their home and it became a place of refuge for me. That comfort was now broken and so was my grandma.

The day he died was gorgeous. I often try to imagine him rising above his bed and lingering in that courtyard outside his window. Maybe he went into the chapel and prayed for all of us still lingering beside his broken body. Maybe in our sadness he was freed and as joyful as he had ever been. Death is an awful truth none of us can avoid or understand until we are looking out to the broken faces surrounding our own deathbed. Maybe I too will be released from life in a hospital bed like my grandpa or at home like my uncle but it really doesn’t matter. What matters is who will surround us when it is time. I would be so blessed to pass like my grandpa. It was awful for those who joined him on his last day but he did not face it alone. The love of family gathered with him on that beautiful September day and remained to his earthly end. My grandma recently told me that she is starting to forget things about my grandpa. I told her it is more important to remember how he made her feel. It is hard to forget the warmth of a loved one.

This was the first time I had been at another’s passing. On the drive to the hospital I had no doubt what I would witness and I knew it would change me. I returned home that night eager to embrace my family. I had an earnest desire to enjoy those I love because my time with my grandpa wasn’t long enough. I wanted to keep everyone within my reach but it didn’t last. I also began to forget and a part of me has yet to accept. It will eventually sink in and I will inescapably be in the throes of grief. For now, I am reminding myself of how fast a life ended on that September day. Today I try to enjoy what time I have been given. I am sure the morning he walked into the hospital for surgery, he didn’t realize he would never leave. He had come in the doors and felt the last breeze on his face, slept his last night in his own bed, and took the last steps to a completion of life. He was a faithful man and I know there was more for him beyond his death but he didn’t want to die. Most people don’t. There is always more to do and another life to touch. There are more gorgeous days to see and grass begging to be tread upon. It is time for me to stop looking out the window and take in life.

*d*