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*

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Extra Baggage

So this was the weekend. The weekend my husband and I would spend a night away from home. It has been six years since we were able to do it last. Six years ago we only had one child. In that span of time we had three more children and life got much more complicated.

It’s the added stress of a son with complex medical issues and my own chronic illness that made a small getaway so important to us. My husband and I arranged this special weekend months ago and we have been talking about it ever since. We have been dreaming about uninterrupted sleep, a schedule free of obligations, and most importantly, much needed time alone. I have been begging for a weekend away for a couple years now. I think the guilt of being away from home and asking someone else to care for the kids, especially one with special circumstances, kept us from following through. It has also been hard to set aside money to fund a weekend away. We were determined this time and we set a little money aside and took family up on their offers to spend the weekend with our kids.

Unfortunately, my RA had decided it too wanted a vacation. It reared it’s ugly head Saturday morning. The pain was so intense that it took me twice as long to do my usual morning preparations. Door knobs and car doors looked more like thorns and sandpaper. During what felt like a grudge match with my make-up and curling iron, it struck me that I may have to cancel our long awaited get away. We weren’t going far, only twenty minutes from home, but when experiencing that much pain, it’s hard to leave the comforts of home.

I decided I wasn’t going to cancel although I was disappointed and upset that I had to be in so much pain on such an anticipated day. I had to understand that I can take a vacation, illnesses don’t. I was upset because I thought my illness should. So despite the setbacks, we enjoyed our time together. We came home early the next day because I was too sick. We came home before lunch and I fell asleep on my chair.

I realized I wasn’t *d* with Rheumatoid Arthritis and Fibromyalgia, I was *d* living along side those diseases. I didn’t want to make room for either in my life. I was trying to set myself apart from the diseases in hopes that I would get better and it would just be “me” again. It’s all quite silly because my son has an incurable illness we have learned to accept. My problem is denial. On our last overnight stay six years ago we stayed near an amusement park and I was riding roller-coasters, walking long distances and I took no medication. Six years passed and changed very quickly. I’m not sure how I’ll finally accept sharing my life with these diseases.. maybe I never will.

That’s the way life is, things change and we have to learn to live with those changes we can’t do anything about. My grandmother had to adjust to life alone after my grandfather passed away. She learned to drive his lawnmower and drive herself where she needed to go because he wasn’t around to do those things with her anymore. It’s been a hard two years but she is adjusting. I have always thought of my grandmother as a strong person. Among many things, she is a beast cancer survivor but you’ll never hear her complain. I know I want to be more like her. Both she and my mom are strong women, and it’s usually not by choice. They have been forced to make room for the unexpected trials of life

This weekend had a good lesson for me; keep going despite the unexpected. I didn’t expect to be in terrible pain the day of our departure, but I can never anticipate what days will be the most difficult. I have to keep trying to enjoy what I can, when I can. I was in a lot of pain the entire weekend but I wouldn’t trade a minute of the time I got to spend with my husband.

I guess I need to think about whether I make room for the unexpected  gracefully or make it come by force; either way it’s coming. I like it when I can do it with something to look forward to or at least with a smile on my face.

*d*

Finding Your Perfection

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Today I watched you stand in front of your mirror, your face barely reaching above the top of the dresser – in one hand you hold your plastic curling iron, pretending to fix your long, dark hair for whatever pretend adventure you and your baby sister have planned for today. I know you both will grow up way too fast. I imagine you both crowding in that same mirror that will someday be too small for both of you to use. One day you will have no use for the plastic curling iron and pretend makeup you adore now. You will leave it and your childhood behind. Soon, you will quietly whisper about the boy or boys you are preparing to see. I know one day you may not want to tell me about your dates, and especially the young men that await you, but I’ll still be there, even if I’m still just watching you from the doorway.

Right now a young man can be anything you imagine. He can be as handsome and brave as one in a functional movie, but someday the choices of whom you will want to be with will be more complicated than you realize. I want talk to you about when you give your heart to another person. Your heart is beautiful and precious. I can only hope that you know exactly what you deserve. You won’t learn the majority of it from me, you will learn the most about men from the most important man in your life right now, your dad. I hope when you decide to date, you are willing to wait for someone who is as wonderful as your father.

I had a hard road before I met the man that I’d love forever. Once we met, it didn’t take me long to fall in love with him. It isn’t hard to love your dad, he has a generous smile and a warm personality. Of course, I thought he was the most handsome man I had met but it wasn’t just those things that made me fall in love with him. It was also his generosity, his willingness to give of himself selflessly, and his big, big heart. When we were together, it was like I found a missing part of myself, the best piece of myself. I knew quite soon he and I were supposed to be together.

When he and I met, dated, and fell in love, he demonstrated qualities that assured me he was a trustworthy man. His actions defined him as a man and who he would be as my husband. I was his equal, his partner, and I never worried about what he would do once he held my heart. He didn’t just compliment me, he helped build my confidence. He didn’t just talk with me, he had a genuine interest in me. This is all important because when the time comes, you will want to know if you are with someone who is just as interested in you as he is himself. You will know the relationship will last through the best and worst times because he made time to know you and hopefully you will have done the same. All of this is important because bad times in a relationship will inevitably come. If what is supposed to be the best part of a relationship brings out the worst in someone, don’t be surprised what the worst times in a relationship will bring out. You will want someone who cares about your well being as well as his own during hardships. I know because your Daddy and I have been through a lot together. When we vowed to love one another better or for worse, we didn’t realize how important that vow would be.

We have faced an artillery of difficult circumstances. For example, we never anticipated having a child with a life altering medical condition, or that I would also be diagnosed with one, all within ten years of our marriage. Both diagnoses bring stress to our marriage in various ways.  It is in these times that I have seen the best, not worst, in your father. He has been an example of how to truly love another. He gives of himself and his love selflessly and meets each challenge with understanding and prayer. When there is nothing but pain and hurt on the faces of those he loves, he is patient and non-judgmental. It may sound easy, but it isn’t. It is hard to smile when there is pain inside and I know he hurts too. It’s not easy to be the one person an entire family looks to for guidance and your dad does it so well. When he smiles and says, “It will get better,” and you can have confidence in his words. He can tell me he loves me and thinks I more beautiful than the day we met and although I don’t believe I am, I believe him.

So girls, one day I hope you will wait and seek a man much like your dad. He isn’t perfect, no one is but he’s pretty close. We are all very flawed but love and the love of someone who truly loves you can make a relationship that feels nearly perfect. Until the day you leave us for a family of your own, we want to love you the same…….. imperfectly perfect

Love,
Mom (*d*)

Year End Reflections

I married him in the late of summer. He didn’t want to see his bride in sleeveless so I wore a long sleeved white dress in the hot of day. My hair was down, sweltering on my neck. It couldn’t be put up, it wouldn’t have been suitable for him. All the details of that day were as he desired. The floral arrangements, the bridal band, and bridesmaids’ dresses were all in his favorite color. My special color was too feminine for his special day.  Everything was suited for a day as he dreamed and we set off for a honeymoon as he always imagined.

This was the first day of the rest of his life. It was the  first day ending my independent life. There was no longer a “me” but an us where he decided what was best for the two of us. I was there that day. I stood before the closed sanctuary doors sick with fear. I recalled the day he proposed. I wanted to run then and I wanted to run at that moment. I thought I was in too deep but I was expected to consider his feelings first in all things.

I was expected to relinquish myself and become his wife. In that moment, on that day, I inherited the responsibilities of a wife. I was solely responsible for cleaning, laundry, and meal preparation while remaining physically pleasing and readily available to him. There was no fair turn in the marriage as my attire was rebuked down to my undergarments while he slowly allowed himself a great deal of comfort with his hygiene and appearance. The small requests continued until larger uncomfortable desires were expected to be met with silent submission. After several years I no longer thought about what I wanted, I just did as he asked. My hair was to a length he preferred, my eyebrows were favored at an appropriate width, and money was never at my disposal. He refused to part with the mutual earnings to allow spending that would not  be a benefit to him. I worked full time but found myself in tears when making the agonizing choice to purchase much needed items, even if it were for my career. I was also not allowed the security of a cell phone after accepting a job forty miles from home. When my salary met his own, my position was downplayed as subjacent to his own.

I was not perfect but I don’t believe he thought what he was doing was wrong. We both had flaws. I was immature and I had a temper. When my requests to talk about marital issues were met with complete silence, I would blow up in frustration. For him, the only problems with our marriage were the issues I refused to drop. The bad fights started with requests to put down the toilet seat, brushing teeth before bed, or my desire to include my family and friends in my life. For me, marriage became about isolation, unresolved issues and silence. He thought his marriage was perfect. He was shocked when I finally left.

The weeks before I left became littered with fights and broken furniture. One afternoon we had the last fight of our marriage. I left for my parent’s home and he never came for me. He spent his time calling me and asking me to come home or making accusatory calls to me while I was at work. He wanted me back but was angry that I was not doing as he asked. He also had too much pride to follow his wife to the ends of the Earth, or a mere few miles up the road.

Some say divorce is worse than death. I can agree with this on some level because running into an ex can almost be like seeing a ghost. I haven’t seen mine since our disillusion was final. I was thankful we had no children thus making the separation of our lives a clean cut.

You may wonder why this would be the subject of my next post in light of the holiday season. New Year’s Eve fifteen years ago, I was laying on the bathroom floor my ex and I shared wondering if I wanted my life to continue. I heard the laughter from the party going on in the basement beneath and felt it was not for me. Against my natural desire to live grew this terrifying thought grown out of depression. Marriage was not like most things in my young life, it would continue until death. I realized I had no second chance and I should have felt more desire for my husband and my marriage. I had ignored my heart and did what I thought was “right.”

I stayed for a few more New Year’s Eve parties until I matured and made the difficult decision to make our separation permanent. The day I left, I had no idea how I would come to that choice but when he never came for me, it was easier to make. I had to be worth the fight.

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Years later, I married him on a cold spring day in the dress of my dreams (it was sleeveless) and prepared confidently, knowing however I came down the aisle, he unconditionally loved me. My heart and my mind were no longer at conflict.

During the approach of the holiday season, many thoughts turn to resolutions or putting behind a bad year. Isn’t it silly to think the same problems won’t follow through to the next year or resolutions will be easier to keep because we can open another calendar? Making a resolution to run away from problems does not work any better than running from them the remainder of the year. What happened to accepting the year we were given and using the short-falls of that year for our betterment?

My New Year’s advice for you: look back and enjoy this year. Do not be in a rush to discard it. Fifteen years ago when I was laying on my bathroom floor, I lost hope. My life was certainly going to be more of the same disappointment but that disappointment led me to where I am. My husband was worth the previous years I was ready to forget. If I would have known the heartache I experienced would bring me to where I am, I would have met it with more joy. There can be joy in our sadness. Unfortunately we don’t realize all that is meant for us until it has come to pass. Don’t regret an entire year based on difficulty, remember the clay is stronger when burned by fire. The heat may sometimes be intense but it is preparation for many things yet to come. Be patient. True happiness is always worth the wait.

Happy New Year! Wishing you the confidence to make the hard decisions and waiting for the best return the new year has to offer.

*d*

Homemade Pizza and Prozac

I made an awesomely beautiful homemade pizza tonight. My grandmother, who’s staying with us for the winter and loves pizza, was very impressed by its tastiness. My husband, who thinks he’s a pizza aficionado found it to be “amazing.” In all fairness though, he thinks a Quarter Pounder with cheese is “amazing.” While yummy in the throes of an insatiable grease craving, I would never say the burger is amazing. Regrettable, Indigestion inducing, Nap inspiring, those are all terms I’d use to describe the sandwich. But, the pizza was really good.

Anyway, pizza is something we don’t often break out the good china for. We spare my blue and white farm animal print dishes and use paper plates with those plastic support things under them. The practice has always been to use the plastic thing, throw away the paper plate when finished and put the supporter back in its place in the cabinet if there’s nothing crusted on it.

(Thinking of my last post about the horrors of germs on towels and the obvious contradiction this plate policy represents makes me wonder if this is why no one can seem to follow my rules. No, that couldn’t possibly be it.)

For whatever reason, my husband, an engineer, has never been able to grasp the supremely difficult procedure and leaves the plastic supporter lying on the counter RIGHT BELOW THE CABINET IT GOES IN. Without fail. Every time. I’ve asked nicely. I’ve yelled. I’ve brought the plate back to his office and laid it down on his desk saying that there must be some mistake and that perhaps he’d like to try again. He normally apologizes and puts it away but I’m dumbfounded at why he won’t save himself the extra steps and me the inevitable eye twitch. It’s true that I could just put the plate away but I have a long-standing belief that I married a man, not a child. That belief is tested on a regular basis but I don’t feel like I should be supporting his efforts to make me into his mother.

So, tonight, when he again left the plastic thing sit, inches below where it was supposed to be, I asked him to explain it to me—explain how he can’t add one more step to the process and just PUT THE PLATE IN THE CABINET.

“I think it’s because I sit the plate down there on the counter and take the paper plate to the trash and then I just never go back,” he said.

I fight back a quivering eyelid. “You walk past the trash can on your way to that counter. Couldn’t you throw the plate away and then walk to the counter?”

“Uh, I don’t know.”

This. This is why I’m medicated.

 

~L~