contributor monica andrade

I love my rare condition family.

On behalf of my fellow friends and family with invisible illnesses and rare conditions as well as myself, let me just say that, when you live a healthy life, it’s almost like wearing blinders.

It’s like being oblivious to true health struggles, and in a way that is a blessing – to not have to know about chronic illness, see it or hear it.

To not have to see rare conditions…what a luxury.

But then there are those like me, my CSF leaks family and many others, who face illness every day. It’s in your mind, your heart and your being. You can’t get away from it and you can’t ignore it because for some that would mean death.

For some it is the difference between life and death to remember every second that it’s there – that illness, that disorder, that rare condition…

But people with chronic illnesses, invisible illnesses and their family members are some of the strongest and most courageous people ever! They are seriously in a class of their own.

When a friend or family member makes a comment or post about their struggle or hardship with a rare condition, it’s one of the best things they can say and do. It’s important to let someone in, let someone help, let someone know… Because every post also means awareness is being raised!

And if you notice that their posts are getting angrier or they’re becoming more passionate about their cause, that’s when you reach out and let them know it’s OK to vent and to be pissed off! A real friend will stand there and scream by your side and say, “F this condition and all the pain that comes with it!”

I’m here to be pissed off with you, all of you – or share in whichever mood you want to be in on whichever day you choose!

Never stop posting, never stop venting and never ever worry about someone who doesn’t understand what it takes to hold yourself and your family together.


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Day after day and week after week of chronic pain can wear a person down and make even the most normal day difficult. And having a birthday after weeks, months or years of debilitating pain can be even more difficult.

During any stage of a chronic illness, the more I feel I’m in control of my own care, the better things go. If I’m informing myself alongside my doctors, I feel I can keep up with the plans and have a say in how I wish to be taken care of. Reaching out to other doctors, asking for a second opinion if necessary and going back to conversations as we learn more are ways for me to feel as though I have some say in the outcome.

Planning a birthday when you have a cerebrospinal fluid leak (CSF) or chronic pain can be a similar situation:

1. It’s your day.

Plan the birthday you want to have, so you aren’t disappointed

2. Pick two dates.

Tell people you’ll have your birthday celebration on a set date as long as you’re feeling up to it and pick an alternate date that all parties can attend in case the first date ends up being an “off day” for you.

3. Know your limits.

Limit the number of people at your celebration to make it easier on yourself for preparation and for postponing if needed.

4. Keep it simple.

Order in food from a favorite restaurant, bring in pre-made dishes from your local supermarket and ask others to bring specific dishes.

5. Plan for people to stay a short time.

A great birthday where you feel your best for two hours is much better than having a few people stay for a long time where you may get tired out for days to come.

6. Timing.

Have the party at your best time of the day. With CSF leaks, we are often plagued by symptoms later in the day. A birthday brunch or lunch may be better than planning an event at night when you’re already tired.

7. Delegate.

People just love to help if you let them. Tell others how you want the house set up, how the kitchen will work and how you will serve drinks.

8. Skip it.

It’s important for you to know if you just want to skip your birthday this year. Maybe you just feel you don’t want to celebrate. Feel free to make that decision for yourself, and your family and friends will have to respect your wishes no matter what they are.

A birthday is a special day for many, and it can feel like you’re being forgotten on your birthday as the days just melt into months. Having a day that marks another year has elapsed can be challenging for many with a chronic illness such as a CSF leak. Sometimes marking the day just emphasizes that things are still not “normal.”

Whatever your circumstances, you can be the decision maker for this birthday!

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Lead photo source: Thinkstock Images

I read a fantastic book many years ago that changed the course of my life. In it I read that there are two ways of being in illness: there is illness with suffering, and there is illness without suffering, and you have to choose which kind of patient you would like to be.

At the time, I thought that was a little strange, but when I first got sick with a cerebrospinal fluid leak in March of 2016, I quickly realized that I had to make that very choice.

I chose illness without suffering.

What I mean by this is that I decided I was not going to call a bunch of people and tell them how horrible this illness was and wallow in inaction.  That is not to say that I did not solicit advocates and seek advice from a few very dear people in my life. What it did mean is that I had some choices to make and I had to make them each day.

1. Choose happiness: I choose, despite my horrible headache, nausea, and other neurological symptoms, that every day I will find something to make me happy. A flower, a walk in the garden, a video to make me laugh, a special cuddle with my dogs, a text to a friend… anything that will bring me a ray of light.

2. Choose action: I did not want to spin my wheels so I inform myself and then I take action to find a way of getting answers. Yes, it is taking a long time, but I am slowly but surely getting there and not feeling that I am helpless and hopeless.

3. Look outside myself: I dedicate time every day to think about someone else who is struggling. I had three friends with cancer this year and choose to send out positive vibes to them each day. I send them texts, presents, cards, I call regularly because it does me a world of good to think of someone else and let them know they are loved.

4. Inform myself: When I am well enough I research as much as I can. My neurologist admits to not having a lot of experience with CSF leaks so I do a lot of research with very reputable sources so I can bring up-to-date information to him

5. Connect: I make sure that I connect with others outside of my four walls.  I sent out a message that I would love visits and phone calls because I feel very isolated and lonely at times. I have connected to Facebook pages, Inspire site, CSF Leak Foundation, and headache groups for support and advice. My husband can only talk about this issue for so long… it is exhausting making it through each day for him caring for me and running a household… he needs a break! (And I needed a place to talk about the same things over and over in hopes of hearing just the right thing to make it all click for me).

6. Live in Gratitude: Much like choosing happiness, I have to choose every day to highlight the things that I am grateful for. This is true of my life at any time but I have found it particularly helpful since my CSF leak. I talk and write about my gratitude so that I can remind myself, both inside and out, of all the many joys and wonders that exist in each day for me.  From tiny little moments of grace that come in the blink of an eye (like when my dog really gazes into my eyes and we each know how important we are to one another) to the really big moments of gratitude like when a family member takes the time and effort to come an visit me and we can share great laughs and intimate times to really know how things are going for one another.

7. Give Back: When I had a little bit more of a handle on things in terms of what was happening with me, the natural teacher in me came out, and I knew it was time to give back whatever I could. I started a blog to help others like me and I have reached out to organizations to open up dialogue and awareness. I am just at the beginning of this part of my journey but already I feel better for reaching beyond the bounds of my body. 

So, how will you choose to live in illness? We have no decision of whether or not we have this debilitating illness, but I believe we certainly have a choice of how we are going to live with this illness!

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If your household is anything like mine, it’s a holiday tradition to watch some of the classic specials such as “Santa Claus is Coming to Town,” “The Grinch Who Stole Christmas” and good ‘ole “Frosty the Snowman”; all timeless and ageless “must-sees” for the yuletide season.

The one that resonates the most with me is the story of “Rudolph the Red-Nosed Reindeer.” Adapted from a song, the story is about a reindeer named Rudolph, who has a unique characteristic. He has a shiny nose. This meant that he was different and unlike all of the other reindeer, who, by the way, chose to laugh and call him names. Rudolph’s own parents viewed his difference as a flaw and tried to cover up the unique characteristic about their son. When your own parents are embarrassed or not accepting of you, that really hurts.

The one person who did accept his difference was a cute reindeer named Clarice; however, her support was quickly silenced by her father, who also wanted nothing to do with Rudolph.

Rejected by his friends, coach and parents, Rudolph decides to run away from home. He is joined by Hermey, an elf who also deviates from what is expected of him. Instead of wanting to work as a toymaker, Hermey wants to be a dentist. Rather than be supported to reach his dreams, he too was shunned.

As Rudolph and Hermey go along their journey, they find themselves in the Island of Misfit Toys, where unconventional toys go when they are rejected by their owners; unwanted because of their variance from a normal or typical toy.

After a long expedition, Rudolph and his friends decide to return to the North Pole. There he learns that his parents and Clarice are off looking for him. He also finds a troubled Santa who is about to cancel Christmas because the weather is too bad for him to take the sleigh out. As he begins his announcement, he suddenly notices Rudolph’s red nose.  Santa’s “aha” moment! Rather than be viewed as a flaw or inadequacy, his nose provides the means that saves Christmas Day.

“Wow,” I say.

The point I am trying to make is that there is deeper meaning in the story of Rudolph. As a parent who had a son with multiple disabilities, I can certainly relate to the inability of others to recognize what my son had to offer. He wasn’t included in the school play, yet he had a smile that could light up a room. I have heard countless stories from parents who work tirelessly to convince others that their son or daughter has the ability to work, learn and play with everyone else.

Each of us has unique qualities, diverse strengths and assorted interests. I hope that the story of Rudolph inspires people to embrace the diversity in all of us and that we find a way to make sure that no one is shunned or excluded from anything. It is what is different in us that can make a difference for others.

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Lead photo courtesy of YouTube: Dino Disco

I had known for a long time that something was wrong. As a senior in high school, I was struggling to keep up, and it was seemingly getting worse as time went on. The months encompassing my diagnosis were without a doubt the darkest I have ever experienced. The diagnosis wasn’t the worst-case scenario, but it wasn’t very positive either. At the age of 18, I sat in the office of a specialist as I was told I would be sick every day for the rest of my life.

And there was nothing they could do.

In the aftermath of my diagnosis, I struggled to fight the darkness. Despite feeling a little better physically, I found myself not wanting to get out of bed. I felt like my life was over before it had even begun. Any hopes I had of a normal life, career or even family suddenly seemed out of reach. I felt like there was no hope. It took me a few weeks to realize I couldn’t live this way. I couldn’t restrict myself and treat myself like I was sick and fragile. Two weeks after my diagnosis I made a crucial choice, one that will continue to have an impact on me for the rest of my life: I chose to fight back.

I began to drag myself out of bed in the morning. My entire body hurt, I constantly felt sick, but I made a promise to myself that I was going to fight with everything in me. I would not let this disease define me and decide my life for me. Every day I have to push myself to go on. It’s not easy, and some days are much easier than others. With chronic disease, every single day is a battle against your own body. You constantly have to fight back and propel yourself forward. It’s exhausting, and there are days when I just have to lay in bed because I don’t have the energy that day, and that’s OK.

In the famous words of John Green, “pain demands to be felt,” and this rings true of physical and emotional pain. Feeling pain is part of who we are as humans, and despite how it makes us feel in the moment, it makes us stronger in the long run. I didn’t know how tough I could be and how hard I could fight until I was faced with my diagnosis. Since then, I have become my own personal cheerleader, and my own biggest fan. I learned that above all, you have to fight for yourself because you and you alone are your own strongest warrior.

My disease taught me to appreciate the little things in life because when your daily life is limited, the little things become the big things. You learn to cherish every moment and celebrate your victories, no matter how small, even if it’s just getting out of bed in the morning. More than anything, you learn how to love yourself. You come to appreciate your body, even when it isn’t working how you want it to. You find out how to believe in yourself and push yourself to go on, even when it seems impossible. Most of all, you learn to see the beauty in life and the wonder in the world around you, whether you are viewing it during a walk through the park or from a day spent in bed.

This post originally appeared on The Odyssey.

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Thinkstock photo by Mercy_C_M_H

As Americans, we seem fully willing to acknowledge that our bodies are a work in progress. We have no problem telling someone how many hours we spent at the gym, how many pounds we lifted, how many miles we logged this week. Our FitBits celebrate our steps, MapMyRun shares our routes and times with the world, countless workout selfies and pictures of chia seed-laden smoothies serve as “fitspiration” to keep us on track. There is no shame in proclaiming to the world our progress toward our body goals.

My body goals have very little to do with my mile time these days. I’m not working toward the perfect six pack or buns of steel. I’m just really psyched to have an essentially functional arm, and I’m working exceedingly hard at breathing these days. If I had a little gidgy to count the number of hours I have spent over the past 17 months in physical therapy, (trying to) exercise, visiting specialists, redesigning my wardrobe, attempting this or that new technique, or simply flat on my back in a tube being imaged, all in the name of getting my body to cooperate, I would be rocking the celebratory confetti.

So last week, after a particularly miserable episode of feeling like I was either going to A) drown or B) be poisoned, thanks to an overabundance of stagnant lymphatic fluid hanging out in my upper torso, I happened upon a snippet of a video that posed the question, “What if we worked on our minds in the same way we worked on our bodies?” The speaker was noting how willing we are to work on our physical selves, but our subsequent inability or unwillingness, thanks to our classic American reticence, to talk about our emotional well-being.

Full stop.

There was never a doubt that I would have help regaining my strength or range of motion, and it has taken an impressive team of experts, including oncologists, surgeons, neurologists, physical and occupational therapists, and chiropractors to get me to where I am today. Last March, when I started manifesting symptoms of lymphedema, I added even more members to my already full roster of health professionals, including three different physical therapists, professional compression garment fitters, skilled tailors, and soon, acupuncturists. As frustrating as it can be that my body still doesn’t function in a way I would like, all of this was essentially expected. There was never any question that I couldn’t do this alone.

So why did it take a team of wild horses (and my best friends, my wife, and my mom) to get me to agree to at least walk through the door of an oncological therapist? And why did it take me over a year to do it?

I grew up the proud product of rock stubborn Irish stock. One of my mother’s favorite sayings, proffered countless times as I lay in a heap of reins at the feet of some horse is, “Are you bleeding? No? Buck up. It’s a long way from your heart.” This woman has severed her big toe and finished barn chores and taken a hammer to the face and continued building (separate incidences, but no less hard core). Couple this with the fact that she was the primary caregiver for my grandmother for a lifetime and you get someone with very little tolerance for nonsense and shenanigans. And while she has never treated me with anything but kindness, understanding, and softer kid gloves than I ever would have expected through this entire cancer ordeal, there is an undeniable vein of steel that permeates my consciousness, one that has frequently served me quite well. Stand strong, work hard, be independent. We don’t do wussy here.

When I learned about my cancer, the radiation, surgeries, potential side effects, and, you know, the possibility of dying, I truly didn’t expect for it to have a profound effect on me. I thought, Suck it up, Buttercup. Many people have been through so much worse. I thought I would be able to buck up, get back on the horse, and continue life as usual without much interruption. But for so many varied reasons, that has not been the case. And mentally, emotionally, I was not prepared. I was not prepared for anxiety, depression, and fear. I certainly wasn’t prepared to need help doing something about it. And for all of that I have felt so damn weak.

Cancer changes your life. It changes your body, your health, your job, your family, your sense of safety, stability, and well-being. It changes you. No matter how hard I wanted to believe that wouldn’t be the case when I was first diagnosed, no matter how hard I have fought for it to not be true after my surgeries, there is simply no denying this fact. Trust me, I tried for all I was worth.

This week, thanks to more body work, I achieved 15-20 degrees more range of motion in my arm. No one knew if this would be possible, and in fact, there was no indication that it would be. I also went to therapy and talked about my life adjusting to cancer. I didn’t think that would be possible. The fact that my body still shows signs of growth, rather than being frozen in the static state it has been stuck in for the past year, gives me hope. And more than simply giving me hope for strength and mobility in my arm, it gives me hope that my mind will continue to grow, adjust, and settle, as well. There is no shame in working on it. Now if I can only find an app that will deliver chocolate every time I hit a new milestone.

This post originally appeared on Caring Bridge.

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Thinkstock photo by Lucid Surf

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