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The Power of Kindness for a Person With Rare Disease

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Our culture obsesses over the “perfect” physical body, so it’s no surprise to those of us who endure rare disease that kindness is often not the response we usually expect or receive when people ask us about our health and bodies, or about the health and bodies of our children with rare disease.

During this current Passover, my husband and I were so thankful for unexpected acts of kindness since I battle a rare neuromuscular disease and am just out of surgery. Some friends surprised us with grocery deliveries, but they quickly departed when we invited them in to chat or even to eat with us. We are keenly aware my rare disease, SPS, makes folks nervous and anxious, and the cause of their feelings is too often judgment. Three dear friends remembered us and sent cards with generous gifts inside, and we never expected those acts of kindness.

My husband received an email at work from a colleague that was a blindside in the midst of the kind acts we just received. This colleague wrote I should call her church’s prayer line for healing and included the number and promotion of her church. This was unsolicited and in the knowledge we are Jewish. Rare disease patients have to hear this “better pray it away” commentary too frequently. It simply feels absent of heart. Ironically, this colleague had been the recipient of my husband’s kindness and help at work and yet, he had to encounter this again. His response was “thank you, but we have a direct line to God.” No reply, of course.

This “prayers for you” approach is utilized too often as an excuse not to do anything for people who are struggling or sick with incurable rare disease, who maybe need your help but sense they would regret asking you for it. I believe genuine prayer is a beautiful and powerful gift. I just have to say it is too sacred to be an excuse not to really do anything for the most ignored and neglected in our society, especially rare disease patients. The presumed or forced Christianity also is unkind, particularly if folks know you hold a different faith or your own spirituality or none at all. Spirituality helps a lot of rare disease warriors and I believe kindness is an act or actions, not only a prayer or a prayer intended to dismiss our struggling so that nothing else is needed.

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Throughout Passover and this Easter Sunday, please consider what true kindness means. Remember it can be the profound difference in the lives of rare disease patients and their families who battle every day without much medical help or hope. My husband embodies kindness. He will drop everything to assist me with anything, particularly after surgery on top of my rare neuromuscular disease struggling. I do the same for him, no matter what. We are a team, and we believe in the tremendous gift of kindness. We have been very fortunate to receive acts of kindness and to be able to offer them.

Kindness is not owned by any religion or any one person. It is a potent force of goodness inside each of us. I regret being so incurably ill that I cannot give more, do more, help others more, live out my kindness more. I realize it’s because as a rare disease patient out of surgery and heading into my next procedure, I need to give kindness to myself, especially in a world that is often hostile or indifferent to disabled rare disease warriors. It is vital we give kindness to ourselves! We struggle enough with our diseases, the battle of treatments and from the cruelty of others. All the more reason we need to cultivate self-care, self-love and compassion for ourselves. It is an ongoing practice to be kind to yourself when you are incurably ill. Without offering kindness to ourselves, negativity feeds off of our illness and isolation.

This does not mean the people in your life should not step up and do right by you. It means we remember to act kindly with ourselves in a culture regularly downright violent to disabled rare disease patients, stories we see daily on local and national news. However, we also see beautiful stories of breathtaking goodness toward rare disease adults and children. These selfless actions change lives forever. Kindness is positive action. It dispels nastiness. It has the power to transform a family’s or an individual’s most horrific time into a time of strength with the loving help of people who care.

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Thinkstock photo via Leks_Laputin.

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How Miracle Flights Help Us Roll With My Son's Rare Disease

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I remember hanging on to the toes of my mother as she died. Her battle with cancer was coming to an end and I felt the need to tell her who all was in the room. My voice was close to a yell. ”Dad’s here, Paw Paw’s here, Me Maw’s here and I’m here!” I went on to tell my mother that it was OK. That she could go. I was 22 years old and I was granting my mother permission to die. Like what I said had any effect on how things were going to play out that day. I had no control. I was just rolling with it.

Fast forward 14 years later, as I sat on edge of a hospital chair listening to the doctor say that my child, Levi, was probably going to die. He was only 8 days old. I did everything right during my pregnancy. How could this be happening to us? I do not remember much from that day after the doctor talked to us. I zoned out shortly after he said, “…if this is the case, there is nothing we can do.”

What do you mean, nothing you can do? You are a doctor! Doctors fix patients. I don’t know if this did not sit well with me because I was a nurse or because I was a mother. But either way, my husband, a registered respiratory therapist, and I went home and did research on what they thought Levi had. We talked about it and decided together. If this is what he has, he is going to die at home with us and his sisters. The ball was officially back in our court as we rolled with it.

Long story short, that doctor was wrong. I was using special feeders to feed my son every two hours and he was hanging in there. It would not be until his first birthday that a doctor at a different hospital would question yet another possible diagnosis. At this point, we had already had two misdiagnoses. When the doctor entered the hospital room and kindly asked me to sit down, I thought, “Here we go again.”

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He said, “Your son has Jansen’s metaphyseal chondrodysplasia.”

My response was, “Are you sure?”

He said, “Yes. I sent two different vials of blood to confirm it.” It had been genetically confirmed. But I had never heard of this condition and I was a nurse.

He went on to tell me that it was a very rare disease. At the time of my son’s diagnosis in 2007, he was one of 17 cases worldwide. Let that sink in. I had a ton of questions he could not answer. All he could tell me was that it was a type of degenerative, debilitating dwarfism. My son was going to be in pain. This was information I could not roll with.

The more research I did on my son’s ultra rare disease, the more I realized I was just rereading the same handful of articles reposted on different sites. The little bit of information I found was terrifying. It was hard to roll with. I realized I was going to have to share my son’s journey, pictures and information if I wanted to help future parents of children with JMC.

I also knew I had to find a doctor who had treated a patient with this condition. I had to find a doctor who would have an idea of what to do. I was a mother on a mission to get the best possible outcome for her child. It took a while, but we finally found that doctor. He was in Chicago, Illinois, and we lived in Ocean Springs, Mississippi.

We started flying up to Chicago from Mississippi when my son was only 18 months old. The doctor was great. He had some ideas on a treatment plan that would help my son get the best possible outcome since there was no cure for his condition. We were flying up to Chicago every six to eight weeks for IV treatments. We quickly depleted our savings account and maxed out our credit cards. Worry set in. We knew where to take him for treatment, but we were running out of the funds to get him there.

Then one stressful night, lack of sleep yielded a 2 a.m. internet search find that changed my worry into instant tears of hope and joy. It had been a long time since I had cried happy tears, but I just could not stop the tears of relief from streaming down my face. “Miracle Flights” will forever be etched in my mind with that joyful moment. We finally had a way to get him to out-of-state medical care, and it felt great! I could once again roll with it.

Miracle Flights celebrated their 100k flight in June 2016.
Miracle Flights celebrated their 100k flight in June 2016.

My son Levi is now 11 years old. Miracle Flights has provided him with 15 flights for medical trips so far. In June 2016, my son was Miracle Flights’ 100,000th flyer. Our family was grateful to help Miracle Flights celebrate this huge milestone. There is no way we could have done it without the help of Miracle Flights. Although my son will forever be under a doctor’s care and there is still no cure for his condition, we know that Miracle Flights will continue to help him get to the distant medical care as he needs. Unlike other children his age with his condition, he is able to walk, and I believe he has a better quality of life because of Miracle Flights.

If I could share just one thing with any other parent going through a rare disease diagnosis, I would tell them about Miracle Flights. Chances are, those families will have to travel to distant specialized medical care. They already have so much to deal with. Miracle Flights is a great resource for those who qualify.

It’s amazing what a 2 a.m. internet search did for our child; it allowed us to find him a way!

— Dona Krystosek, RN
Family Advocate, Miracle Flights

Learn more at Miracle Flights.

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5 Lessons I've Learned About Accepting Limitations With Illness

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With my chronic illness comes a lot of guilt. It is mostly guilt about being a disappointment to those around me. Guilt about the things I cannot do. Guilt about the events I miss out on. Guilt about the memories I cannot make. I also struggle with the many limits that come with living with a chronic illness. Sometimes it seems like there are more limits than there are easy decisions. I spent most of my adolescent years worrying that I would be forgotten and left behind by the people who told me to my face that they understood why I could not be there, but behind my back resented that I was not. It is a tough emotional weight to have to carry, especially at such a young age. I found that really only time and experience could teach me how to deal with these feelings. These are the best lessons I have learned:

1. Don’t blame someone for their initial disappointment.

It is the worst feeling in the world to have to tell someone I cannot do something and see the disappointment in their eyes, especially when I was really excited myself. It can be very overwhelming and cause excessive anxiety and depressionto try and console someone else while still patching up my own wounds. I try to remember that it is just a natural, human reaction to be disappointed when we do not get what we want.

I cannot blame people for that first reaction of frustration, but I do pay attention to what the person does after – after they have time to think about it. If they are still angry or upset with me, after they have been given some time to digest, than I have to question whether they can be the positive force I need in my life to persevere. Because that is what this is: perseverance. A person who cares about me will know how much it kills me to disappoint them, but more importantly, to have to miss out on precious time with them. Because that is really what I want most in the world is time with the people I care about. Every day, I worry there will not be enough of it. As I grow older, I notice the people who, instead selfishly complaining about how it affects them, turn to me and offer the needed reassurance and support. The ones who genuinely look me in the eye and say I will be missed and that I will get better soon to join them. The ones who reassure me that there is, in fact, time.

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2. Remember that no one can do everything, and you alone will reap the consequences of overdoing it.

As the action-oriented person I am, some of those most painful words for me to say are, “No, I can’t…” I want to do it all, see it all, be it all, for everyone, all the time, but there came a point when I had to realize for my own physical and emotional health that it is just not possible. No one person, healthy or not, can do everything – attend every event, meet every obligation, live up to every expectation. There are some times when I physically should not do something because it could put my health at risk. That is really hard for me to admit because in many ways, I feel helpless: helpless against the situation and against my disorder.

With a fatty acid oxidation disorder, overdoing it – even by doing something seemingly minor – can lead to a quick downward spiral. One second I have what seems like trivial muscle aches and as soon as the next day, I can wake up unable to walk properly and be rushed to the hospital. This, I am not going to lie, is scary. To this day, even after 24 years, I have not ceased to be terrified. It is for that reason that I have found knowing myself and my health enough to gauge my limits is actually the most impactful way of taking back control and turning fear into power. Power to stop while I am ahead, to put my health first, to get better and to ultimately grow in the knowledge of my disorder.

However, as any world leader will tell you, with great power comes great pressure. There will always be people who do not understand. Honestly, no healthy person can really ever understand completely because they have never had to live through it. Just as those of us who have never lost a parent or been through severe trauma can ever truly understand what that person has been through and lives with every day, being ill, especially chronically, is not something easily understood. It is very complex—physically, socially and emotionally. It is not an experience that I would wish for anyone to truly be able to grasp because that means they have to go through it. But for those of us who are chronically ill, we must bear it and all the misconceptions and misunderstandings that come with it.

There are always going to be people who think you are exaggerating your symptoms to get out of something. Those people are always going to be around, but I have learned that, honestly, those people are not worth my time, and they especially are not worth jeopardizing my health to impress. At the end of the day, if I push my limits too far, no one will suffer the consequences – the pain, fatigue and wasted time – but me.

3. Do not grow angry at your illness.

I spent too many of my younger years very bitter against my disorder. I constantly obsessed over the questions, “Why me? Why did I have to get a rare, chronic illness that messed up my life? Why do I have to be in pain and miss out on some of the most important moments of my life? What have I done to deserve this?” It was not a fun way to live. I was constantly angry at the world and sometimes it would even come out on those around me who were only there to try to help. One day I realized none of those questions had answers and spending my time harping on unanswerable questions would get me nowhere. It is not like once I found the answer I would be cured, or even less sick. I had to accept and even embrace that this disorder, like it or not, was with me for life. The responsibility to make the best of it was also mine. My chronic illness will not define me as a person. How I am able to continue living a great life with a chronic illness does.

I began to use my knowledge of living with a chronic illness to become a more compassionate person and even help others who are struggling. By reaching out to others, I also started to realize I am not alone. There are so many people out there who live with illness or another sort of burden every day too. We all have our hardships and if we use our shared experiences to lift each other up, the power of that type of healing is immense.

4. Forgive yourself.

I often find myself overcompensating for my illness by trying to be perfect in every other aspect of my life. That kind of pressure only leads to one thing: stress. I am not perfect (not even close!) and I don’t need to try to be. Having a chronic illness is not what makes me flawed. Being flawed is a human characteristic. It is OK to be flawed. There are times when I am going to slip up, when it is going to get too overwhelming, when I am going to get angry, when I am going to push myself too hard. I have learned to forgive myself for those times. It is one of the most important things I can do because having a chronic illness is hard work. There is so much to juggle and as long as I am doing the best I can, that is what matters.

5. Choose those who choose you.

As I have gotten older, I have found one of the most important parts of life is not how many degrees or raises I get, not by which age I marry or have children and not by how many cars or houses I buy. What truly matters is the relationships I build and how I foster them. Are people better off because I am in their life?

The biggest piece of advice I can give regarding choosing which relationships to focus on, especially when you have a chronic disease, is choose those who choose you and continue to choose you every day, even on the bad ones. Don’t ever feel like you are not worth being chosen because your life may be a bit more difficult. Yes, life with you may be a little more unpredictable or stressful at times, but what you may “lack” you more than make up for with your dedication to being your best, healthiest self and your fighter spirit. Never forget that.

It is true that I may never travel to all the exotic destinations of the world. I may not be able to go to every party or be the life of every party. I may have to go to sleep earlier some nights and take more medication than any 20-something should have to, but the reason I do it, despite my own internal struggle most times, is so that I can wake up and be functional the next day. So I can be there to do my job, be there for my friends and family and, most importantly, live my life to the fullest and contribute to the lives of others. I may not always be able to be that spontaneous, live-life-by-the-seat-of-your-pants friend, but I will be there for you when you need me most, in those moments when you don’t feel like you have a place to turn. Let me tell you I have been there and the most helpful thing was having that shoulder to cry on. You will know I love you every day because no one knows better than me that love is by far the greatest healer.

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When You're Too Rare to Fit in With the Other 'Zebras'

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In medicine, a zebra refers to a very unlikely diagnosis. It comes from an old saying they used to teach medical students about how to think about medical cases that came to them. The saying went, “When you hear hoof beats, think of horses, not zebras.” So we know that Zebras are rare, but what happens to those zebras who are so rare that the other zebras don’t even know who they are?

I’ve been having a lot of medical setbacks lately, and have been struggling to get answers. We all know that the doctors aren’t always the best at understanding our rare conditions, so it is difficult to rely on them for support. Most times they simply add to the multitude of frustrations that we deal with on a daily basis anyway. Chronic illness survivors generally seek out advice and support from our peers, those who have been through exactly what we are going through. Zebras can sometimes find this a bit more difficult since we are by definition, rare. So, we tend to turn to social media outlets to find others in our situation.

The internet and social media have made it possible for members of the rare disease community to more easily connect with others around the world who have the same condition. We can provide support for each other, discuss different treatment options, and be a soundboard for when we have to make difficult medical decisions. Online “spoonie” communities have popped up everywhere to help people with all kinds of ailments cope. Many members of these communities say that without the support of their online friends they would feel isolated and misunderstood by everyone. But what do you do when you have such a rare diagnosis that even the online communities for rare diseases don’t know what it is?

This is the situation in which I find myself. I have a metabolic disorder that inhibits my ability to process certain proteins. It also causes mitochondrial dysfunction. Its symptoms are a culmination similar to those of mitochondrial myopathy, chronic fatigue syndrome, fibromyalgia, dysautonomia, gastroparesis, POTS, and many more. My disorder is what is known as an organic aciduria. There are many forms of organic acidurias, so I went to the Organic Aciduria Association to try to find some answers. I sent a message to the organization about my condition trying to get some answers, but the response I received in return was disappointing. I was told that my diagnosis, 3-methylglutaconic aciduria, is one of the rarest of the acidurias, and they had no information for me. No information!? How could that be? I was told to reach out to the members to see if anyone had experience dealing with it. I have yet to find anyone.

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So what does a zebra do when it doesn’t look like any of the other zebras? Where do the rarest of the rare go when they need support? Don’t get me wrong, the other zebras play nicely. They try to support in ways that they can, they add me to their groups and lists, and chat with me. They do their best, but when it comes down to it I am still the only one in the group who doesn’t quite belong. I don’t have a group I can call mine.

When you have a chronic, debilitating illness you can become isolated from the rest of the world. It’s easy to fall into a depression without proper support. Having a sense of belonging to a bigger community is critical. That’s what so many “spoonies” have found through social media. I have found that although I may have people who are supportive, I have yet to find anyone who truly understands. I am the herdless zebra, and regardless of how much support you have, without a herd you are still in this alone.

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Why I Struggle When People Tell Me, 'I Hope You Are Feeling Better'

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I love that friends, family and even neighbors often think of me, ask how I am, or say they hope I am feeling better. It lets me know that I am cared for and not forgotten, even though my disease has pretty much caused me to live the life of a recluse over recent years.

However, it also conjures another emotional response. A response that I am sure many others with chronic diseases will relate to. It conjures a feeling of guilt and even frustration.

Why?

I have been contemplating that question for a while and I have come to the conclusion it is because I feel like I am letting everyone down. People generally like to read a good story with an introduction, a middle with a climax that is often dramatic but has a conclusion with a happy ending.

It is like that in real life too. If we hear someone is sick, we like to hear soon after that they are better. If we hear someone has a terminal illness or chronic disease that will progress rather than improve, well, what do you do with that? How do you find the right emotional response to the person living with those circumstances? The natural response is to run or feel anger or fear or deep sorrow.

Flight or fight!

People with chronic diseases have no choice but to fight, as flight is a little impossible for most of us. Those around us, searching for an emotional, appropriate response to the situation have little choice but to ask, “How are you today?” or to say, “Hope you are feeling better.”

The guilt and frustration of some people with chronic diseases is rooted in the fact it is unlikely many of us are feeling any better than we did yesterday, or the day before. And, it is likely that some of us will be on a path of getting progressively worse.

No one wants to hear that and no one wants to say that. It all sounds a little too dismal! I do not like giving dismal news, so I start to feel bad that I have to. It is either tell the truth (or a dulled down version), or lie. I have always been such a strong advocate of openness and honesty so, if I did lie, I would still feel overwhelming guilt.

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How do we, those with chronic diseases, and the caring friend or family member, live happily ever after with a situation that is ongoing and burdensome to everyone?

We just need to keep trying to understand each other. The one with the chronic disease needs to understand that people really cannot find the right thing to say, because what can be said? The caring friend or family member also need to understand that your response may simply be, “Thanks for asking. Still no change or things are getting a little worse.” Depending on who you are talking to, you may feel comfortable to expand with a few details.

At the end of the day, contact with others is so important for our overall well being. My tip is once that awkward, “Hope you are feeling better today,” moment is out of the way, simply ask the caring enquirer how they are and get a conversation flowing that makes everyone comfortable.

If you are looking for genuine support, care, understanding and friendship, you are welcome to join my closed Facebook support forum, “Medical Musings with Friends.” It is a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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To the ER Doctor Who Told Me I Was 'Wasting Time and Resources,' Thank You!

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Dear Emergency Room Doctor,

Thank you for being such a jerk to me!

You may not have realized when you said I was “wasting emergency department time and resources” over and over that you changed me, but you did. While you may have thought I had “just a headache” and was “taking up space for patients in the waiting area who needed to be seen,” you were wrong.

See, I heard how it started. It’s just a curtain after all. I heard the triage nurse slam my file down on the desk and say the person in my room was here for a headache. I know how it must have seemed when you had a full ER for the entire three hours I sat out there waiting to be seen. You didn’t get it because you didn’t listen.

Listening is a key part of your job. It’s a part you failed at that day. You and the triage nurse decided I was there for drugs. I get that. I’m sure you get that a lot. But you missed that I had been in the hospital for three days and was just released a few days prior. You missed that I said the hospital neurologist on call had already called to say I was coming in and that the hospitalist team was ready to admit me. You missed the very key point when I talked… it wasn’t a headache, it was head pain.

The head pain was so bad, cracking my own head open by banging it on the floor seemed like it would be less painful. It was so bad that I had triple vision and could barely sign my name to paperwork. It was so bad, I passed out. It was so bad that I had a bag prepped and was willing to come back to the hospital after just leaving. But you missed all of that because you didn’t listen.

You may have had a bad day or had a lot of people who could have been seen elsewhere, but saying “every doctor tells their patient to come to emergency, that doesn’t mean you need to” wasn’t helpful. If my doctor tells me to go to the ER, what am I supposed to do? You have the medical degrees.

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I ended up leaving that day against medical advice (AMA). Why AMA? Because the resident said I could die by morning if I wasn’t evaluated more, and you wouldn’t sign off. You told me over and over I shouldn’t be there but wouldn’t discharge me. So I left because dying at home on my bathroom floor was a more acceptable option than dealing with you telling me how wrong I was for five more minutes. Does that make you feel like a better, doctor?

I get that I have a rare disease. I get that you don’t come across it much. But why do you get to decide I am wrong when other people who would be taking care of me once I’m admitted have said I need to be there?

You may have been horrible to me, but you made me a stronger patient. When I returned a few days later and was admitted for the treatment I didn’t get when you were in charge of me, I was strong enough to say no when they wanted to discharge me. I knew I wasn’t well enough and they hadn’t found the cause, so I made them transfer me.

While you thought I was being overdramatic, which clouded my treatment, I made them transfer me to a hospital where they did find another problem — a problem that still may have been hiding today if you hadn’t broken me down so much that I started saying the white coat does not mean the person has common sense.

You broke me to a place where I no longer take a doctor’s word without finding out myself. While it may be slow progress in treatments, you taught me I can’t totally trust my care to a doctor without learning myself because there will always people like you around. There will always be a doctor who makes up his or her mind before even seeing the patient. There will always that possibility that I will run into someone exactly like you, and I will no longer accept it.

You may have broken me to tears once, but you taught me I need to trust myself before I trust the white coat. (But you will still never treat me alone because I have zero trust in you.)

Thank you!

Follow this journey on My Corner of the World.

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