Invisible Illness – Sometimes We ALL Need Help

Published on October 21, 2017 by beatingcowdens7 Comments

The day starts with me laying in my bed, trying to wrap my mind around the fact that it is time to face another day. I lay there a few moments. My heart rate begins to rise. I feel the familiar ache and throb in my legs, and I quickly calculate the number of hours until I can re-visit my bed.

On the days I can move fast enough, I take a quick shower before I undertake the 10-15 minute process of waking Meghan. Please, save the judgment that she is 14 and should be waking herself. You’re right. Except by the time I get to the top of the stairs there are several alarms sounding simultaneously. She would if she could.

Waking her is no easy task. Her body, so deeply fatigued by her daily physical and emotional battles, resists breaking those last few moments of cherished rest. Never enough. All teens are tired. I get it. I don’t know for sure that YOU get looking into the eyes of a 14 year old, bright, compassionate, articulate, and full of promise, as she pleads for it not to be morning.

The two of us together are some pair in the early hours. My body aches but by the time I get through the shower I can usually shake some off. I am also 30 years her senior, so living in my mid-forties, I can expect some normal aches to start to take hold.

Like so many things, Meghan’s life is mine amped up. I was always tired, but didn’t know “train wreck tired” till the attempts to balance my thyroid in my mid-twenties.

She was 10 when that journey began. It is not right yet, although a competent, sensitive endocrinologist watches closely. Synthetic anything gives her body a problem. Always has.

Adding in the synthetic hormones to contend with the suspected start of endometriosis has added a layer we need, but didn’t want. The pre-cancerous tissue in the uterus is likely to be helped by this step, as well as excruciatingly painful periods, but like all things it is not without cost.

She drags her body down the stairs, walking crookedly to contend with a back, or a hip, inevitably and almost constantly displaced by a full foot size discrepancy. Bi-monthly chiropractic visits put things back in place, for as long as they last on her 5’8″ frame.

As she travels the two flights down to her bathroom, there is an internal, and audible triage of the aches of the day being sorted. It’s agonizing to watch and listen to. You see there is never a day where everything feels well. There is never a day where she is just tired. There is never a day that she wakes eager to face even the most exciting events.

There is a part of me, a small quiet part of me, that sometimes allows myself to believe that maybe she’s playing games, exaggerating, or trying to make me insane. And then I think quite simply, why?

Why would she WANT to hurt, or have an upset stomach, or be in pain. She, who is eager to please her parents, and everyone she meets, would not want to be in internal turmoil or conjure up ailments.

So my mind does it’s thing as well. “How many days has that been bothering her?” “Do I need to take her to a doctor?” “Can they really help anyway?” “Is anything lasting too long?” And so on…

And somewhere in the middle of this, as the moments kick past 6, I have to push. We have to be out the door in order for her to be at her 7:25 period 1, and for me to be in my classroom in time to set up for my 8AM students. There is really no time to deal with any of it. We simply need to press through and get out of the house.

We do a lot the night before. Lunch is packed, swim bags are packed, clothes are picked out. Homework is always in the backpack. Mornings are not for things that can be avoided.

I have to admit there are mornings where it has gone very wrong. There have been mornings where I have not felt well myself, and my patience with the multitude of issues required to just get herself dressed and ready are forgotten temporarily. I am not proud of the mornings where the clock passes the point of panic and I evolve into a screaming shrew. But, this is about honesty, and honestly, it happens.

Smooth or not, we find ourselves in the car on the close to 20 minute ride to her school. And that is where it gets trickiest.

Months ago Meghan was diagnosed with PTSD – Post Traumatic Stress Disorder, secondary to medical trauma she has endured in her young life. That PTSD has been exacerbated through the years through a variety of triggers she works to manage. But, many days it seems her “fight or flight” is broken and she is wound into a high state of awareness, of EVERYTHING. That means every human interaction, every test, every assignment, every competition, every audition is just amped up. Sometimes the volume is so loud it can feel almost crippling.

And, yet still, as we work daily, she has to get out of my car and walk into that building alone. Some days are easier than others. Some days, I’m tempted to snatch her and drive far away where I can keep her safe and calm. But, she’s not 4 – she’s 14. And, she has to go. She knows it too. So she does.

It’s not about the people anymore. Although it was for a few years. Now, thankfully, it’s not. The people are kind. They students are friendly, and while no one is friends with everyone, she is after only about 20 days, building positive relationships with peers, her swim team, and many adults.

So why? I’m not sure. And I’m not totally sure she is either. That’s why we’re working on it.

But, there are theories.

Post Traumatic Stress Disorder is not rare. But, Cowden’s Syndrome is. And in my child the two are intermingled. The relationship between chronic medical issues, 18 surgeries, tests, scans, hospitals, isolation, heightened anxiety, the need to self-advocate, a lack of trust for the many medical professionals who have handled things wrong, and the isolation and overwhelming feelings this can cause is just the tip. Coupled with generally feeling off, having a super sensitive stomach, relentless seasonal allergies, and being an athlete who simultaneously loves her teams and fears competition can create consternation. This is the very tip of what I know to be a Titanic sized iceberg we are working on melting.

She likes her school. She likes the people. She likes the environment. And yet there are days it is a struggle, a moment by moment struggle to make it. She hurts. She pushes. She is stubborn. She is strong-willed. And for as many times as those characteristics cause me to want to bang my head repeatedly against a brick wall, are as many times as I thank God she is that way.

She likes to swim too. She likes to swim for her school. She likes to swim for her 12 month team. She enjoys feeling strong, and having a body that reflects her hours of training. I am grateful that she is an athlete. But, the battle to get into the pool when every piece of you just hurts, and you want nothing more than to be in your bed is a battle her coaches or her teammates do not fully see. I mean they see the performance anxiety, which is WAY deeper than what it seems to be, but the rest, the full deal is carefully and intricately hidden like so much else. No wonder she is tired.

We are working on it.

Every day is a battle to get through the day. Sometimes physically, and other times mentally and emotionally. Yet, day after day, it gets done with a grace that often blows me away.

Every house holds secrets. Private, messy moments that are not shared with the world. We are not the only ones, and we are not oblivious to the moments others must hold close to themselves.

Collectively, we all need to stop judging. We must stop imagining their life is perfect because it looks so on facebook, or instagram, or snapchat. We need to be kind. We need to go back to the basic rule that “If you have nothing nice to say – don’t say anything at all.”

We need to not profess that we can fix others problems, or make ourselves feel better by offering “quick” solutions. It is hard to watch others in pain. It is not easy to accept that sometimes there is nothing we can do besides be a friend. We need to acknowledge pain, and struggle as real without giving in.

In this house weekends are still about survival. They are about recovery. They are about storing up a ‘spoon’ or two so that we can use them in the coming week.

One day I’d like us to have a social calendar. I’d like to get out as a family and make some memories on a sunny October day. But, today was not that day. Today was swim practice and vocal lessons. That is what we could do. Today.

The evening winds down and we are faced with the reality that sleep will need to happen again. Sleep is tough times. Not for lack of fatigue, but for a teenagers over worked mind. We are working out a system. We are seeing some progress. The struggle is real.

We are working on it.

This week we contracted with a company for a Service Dog to assist with the PTSD. It will be one of many interventions we will use. We have sent a deposit. The process has begun and can take up to a year. We are hoping it will be sooner.

If you have read this far, and you have real suggestions for grants we can apply for to assist in raising the cost of this dog, your assistance is valuable.

We are not looking for an analysis, or reasons why we Meghan might NOT need a Service Dog. We have medical professionals encouraging this. We will deal with logistics as the dog’s arrival looms. In the mean time, we are working purely on fundraising.

The organization we are connected to is http://www.medicalmutts.com They are an accredited business that we researched extensively. When the dog is ready we will need to spend a week in Indiana picking it up.

The decision to make this move was based on many factors, but it was guided by Meghan. She has researched. She has thought. She has read. Her father and I have learned to trust her instincts. Undoubtedly, that is one of the reasons we have come so far.

Looking forward to hearing your encouraging, helpful comments –

We remain

#Beatingcowdens

Keep Swimming… Just Keep Swimming

Published on March 12, 2014March 12, 2014 by beatingcowdens3 Comments

This one is a favorite of a dear internet friend :-) — This one is a favorite of a dear internet friend 🙂

This image has been on my mind all week. Truth be told there is an awful lot on my mind, and I apologize that most of it is likely to come out jumbled. When I don’t get to the computer regularly there is all this stream of consciousness stuff…

My girl feels cruddy. And I know, “its a big surgery,” and “it takes time to even things out.” But it really stinks. Her thyroid numbers are way out of whack. The endocrinologist is absent… most of the time, and even if he couldn’t answer my questions, I’d like to be able to ask them. If my thyroid numbers were as wacky as hers you’d be scraping me off the floor. Here comes the crazy mom – trying to restrain myself for one more blood work cycle before I fire him too. Good thing I live in a big city. I might well run out of doctors otherwise.

It is so hard to watch her – feeling betrayed by her own body.

She is bright. And kind. And super rational. She gets the whole idea that people have it worse. She is grounded.

But sometimes she is 10. And she doesn’t understand why she can’t keep up. Cognitively she can dance. But physically…

She has to decide on a Friday if we are busy on Saturday morning. This way she knows if she can play gym. She gets through the gym period, and often has the time of her life… but we have to block out hours on Saturday to recover. She played last week. She had the time of her life. Good thing the school staff doesn’t have to watch her get out of bed on Saturday.

And running. How she LOVES to run. And she’s fast. But she can’t. Not for long anyway. Tendonitis, inflammation. And forget it this week as we TRIED to lower the Celebrex.

Never mind the swimming. She belongs to a team that practices 4 times a week. On a good week we get there twice. Not for lack of trying, but exhaustion gets in the way. It is CYO season now, so she is with a more recreational team too. Some fun times. But she wants to be faster. And she could be. But her body betrays her. And it makes her angry.

And now the headache. The migraine returned 2 days ago despite the recent medication increase. She is just so very tired. The neurologist called me tonight. Increase the Celebrex. See if that helps. So much for less medicine. Let’s pray for relief.

I think alot about the others. I think about the other’s with RARE Diseases. I think about the ones less fortunate than us.

I also think about the other’s with Cowden’s Syndrome. I have never met them – any of them except my own girl. But, we “know” quite a few. There are some I keep in touch with on an individual basis, a few Meghan corresponds with, and the bulk of them come from a Facebook group for Cowden’s sufferers. We share experiences and ideas, and successes and disappointments. We toss things out to each other before the rest of the world. We speak safely to people who “get it.” And although even among us our symptoms vary widely, and I believe a lack of research keeps us from being sure what is Cowden’s related, they are my best support.

I often go to bed and wake worried about these people I’ve never met. I think about their physical struggles, and their family struggles. I pray for them when they have tests, and surgeries, and they do the same for us. People could argue they aren’t “real” friends. I would have to disagree. They give me hope.

Then there are days like yesterday, when you arrive at home after 14 hours at work to find a package on the counter. And inside the package are jeans for Meghan and I. Carefully sewn on each rear pocket is the denim ribbon symbol. Also in the package was a bag “Hope, It’s in our Genes.” Yep. It sure is. A friend of my sister’s. Inspired my some crazy words she’s read here. Go figure. Grateful.

And there are the events coming up. The fifth grade events. The ones where she will try her best to fit in. The ones where her PTA has carefully worked behind the scenes to help her feel “normal” as they serve her dinner at the Father Daughter Dance, and the Fifth Grade Dance. The trip that someone will have to come to – because there won’t be any safe food there, and the growing realization that so much socialization in life revolves around food. Just another way to feel different. But she plugs along. Keeps that smile. stays focused on the good as best she can. Because she is acutely aware that there is a lot of good. And painfully aware that things are fleeting.

We miss my father. It’s only been a few months, but every day seems to contain a bill, or a banking issue, or a quest to sort through the photos left behind so I can copy them for my siblings and get about the business of sharing them with the world. There is a glitch in each direction. No major problems. Always just a series of minor ones. He may not have been always around, but the time he was was powerful. Maybe I keep myself too busy. Maybe I worry about tasks insignificant to others. But I do, we do what we can to keep his memory alive. We talk about reality, and we keep our most special missions close to our hearts.

There should be sunshine and roses. But there isn’t. Well maybe there is… if we look hard enough. All I seem to hear are stories of tragedy, heartache and pain. In my own family, and in general conversation there are serious illnesses, untimely death, suffering, pain, and sadness. I don’t profess to know the grand plan. Not for a moment. And I am sure its better that way. I have only learned to find the blessings I can in whatever I can, as frequently as I can. That is what keeps me sane.

I am far from perfect at this. FAR from perfect. But I – like all of us, am a work in progress. So as the days sometimes seem insurmountable… I remind myself, and my girl – that we have to follow Dory’s advice…

Recovery

Published on August 22, 2013 by beatingcowdens1 Comment

Recovery.

We should be professionals around here. We should just get up, get going and move on.

But we are human.

We hurt, inside and out.

We get tired, and lonely.

We understand the tired and lonely that others have too – but some days it doesn’t make ours better.

Some days its hard to look at things from someone else’s point of view.

And that’s OK.

Meghan is full of exhaustion and pain and conflicting emotions.

It’s annoying to realize you blew your whole summer at doctors and in surgery.

Thankfully we snuck in that Disney trip.

I can, and I do, take solace from my Facebook friends- the ones I know for real, and the web of Cowden’s survivors I have become intertwined with.

She has a smaller network. Mostly because I don’t think she is capable of realizing the effect she has on the lives of so many others.

Yet, she is my hero. And my rockstar.

I shuffled her around these last few days a lot more than I wanted to. But, she likes to stay close by me when she is hurting.

So yesterday we picked up the car. Apparently the “Magic Wand Guy” (Field tech) ran out of pixie dust. He declared my car “not broken.” Ironic because 2 weeks ago the same shop who held it for 10 days said they couldn’t fix it.

It’s definitely still broken. On to the arbitration with the Better Business Bureau. Just in case someone thought we might rest. No worries. Gloves are on.

She went with Felix and I for our physicals last night.

Then this morning, she went to work with me for a bit, and to pick up some of Daddy’s medical records. (Really WHAT was I thinking staying close to home for a doctor?)

She is tired. But she smiles. And she hugs us. And she asks for pain medicine. And she wiggles her fingers. And she looks at her pool, and the calendar, and she feels the inevitable.

I can’t stop it. No one can.

So we keep busy. We rest. I stay close by. We giggle and make jokes. If I had to “lose” a summer, I couldn’t have lost it with a better young lady!

Recovery.

No worries – WE GOT THIS!

25,000 – How did THAT happen?

Published on March 20, 2013 by beatingcowdensLeave a comment

I like math.

It makes sense. At least to me. There are questions. And then there are answers.

I ~~sometimes~~ often wish life could be a little more like math.

I am a numbers person by default. I remember dates, and addresses, and phone numbers.

I used to be even better at it, but age and stress have clouded a bit of the clarity.

But, imagine my surprise when I checked in on my blog in the middle of this crazy week to find the stats telling me it exceeded 25,000 views!

I can not for the life of me – even loving numbers- imagine how that happened. But it did. And I am humbled and grateful.

Especially on weeks like this.

Where things don’t go according to plan. And I have to be so careful what I say when the battles are too close to home.

I am tired. So tired of fighting – all the time.

But you bolster me up, and give a reason to keep fighting, so that Meghan gets everything she needs, and that I do too!

So thank you… and stick around. You never know what will happen next!

There is always hope... — There is always hope…

Back to work, back to reality!

Published on June 6, 2012 by beatingcowdens1 Comment

Elementary school kids can be really cute. Sometimes. I have been out more than I have been in these last few months, but since I have been at my school a long time I have a relationship with many of the kids and their families. So, when I walked back in on Monday I was accosted by small people, all of them waist high. Hugging my belly and telling me how much they missed me.

Um, thanks… and OUCH!

I smiled as I tried to slip away from them without offending anyone. They are so innocent. Not a single one thinks to ask why I was gone, they are just happy to see me.

I walk to my classroom, carrying my extra light bag that weighs 6 pounds. I know this because I was told to carry nothing over 10 pounds, so my overprotective – God I love him – husband brought down the scale we use to weigh our luggage, and checked on my bag.

He knows I like to drink a LOT of water during the day. He brought a case to my room, so I wouldn’t have to carry it. He is a pretty good guy.

I sit and look around. It has only been a few weeks again, but it looks strange. Different. I get the sense I am not too sure I belong.

Then I look at my schedule. Classes are coming. Real classes, expecting me to have lessons for them.

You mean I have to teach too? Wasn’t getting here enough?

I made it through – thankfully my days were shortened so I could deal with other issues.

I was OK with coming home from the hospital right after surgery, but did this doctor really know what she was doing sending me back to work in less than 3 weeks? Probably.

My surgery site barely hurts, and aside from some light bleeding, things are getting better. I have to keep behaving, and that is hard. Very unlike me.

It was probably good to get up and out of the house. To be around people. To be reminded that life isn’t just about me and life goes on while you are home recovering from surgery.

I am just so incredibly TIRED!!!!!!!!!!! The deep, bone crushing kind. I need my energy back.

Tomorrow there are no kids in school. Staff development for the teachers. I am starting to feel like I have a purpose again. Less wallowing, more working.

My clothes are all picked out. Let’s see what they make of my favorite breast cancer ‘survivor” T shirt. I may be exhausted, but I will be sure my sense of humor follows me to work and wherever else I go.

If we can’t laugh at ourselves, and our own lives, we are in a LOT of trouble.