The Inevitable Change

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Pain doesn’t define who you are but it could mould you in unexpected ways. I’ve seen it happen to my daughter Lynn, and it’s only been a year since her diagnosis with Erythromelalgia. The Man on Fire Disease has brought the best out of her.

I can count and list many limitations and struggles she faces daily. I can describe her pain and make a graph of her pain level over the past year. Yes I can, I’ve got it all written in a daily journal. But I won’t. I can write a list of things she can’t do anymore. But I won’t. I can recount the many questions and worries she has on her mind and on my mind too. But I won’t either.  However, I do want to share with you the  positive change that has occurred to her over the past year. It’s hard to believe there is a positive outcome from such a painful disease, something no doctor would have accounted for, and I certainly haven’t been taking notes of. But it’s definitely something hard to miss.
Through this disease Lynn has learned a lot about herself. She has gained strength to face the daily pain and uncertainties. My heart aches to see her physical limitations but she acquired another level of discipline, where she has to accommodate to certain environments, give up certain activities and replace them with others. Lynn learned to plan her day according to the level of pain she has or would have. Although one of Lynn’s most prominent qualities has always been the sensitive and caring girl, she has become even more compassionate to others. Her circle of interest in people who are  suffering or facing challenges and pain expanded. Prior to her diagnosis, her main concern was about family, friends and the small social circle she’s exposed to. However, flash forward one year and she wholeheartedly cares about people she’s never seen or met in her life, people facing all kinds of diseases. Her compassion is so limitless, and her mind is always racing to find ways to spread joy and be of help to others, and she amazes me with some of her ideas. So far she has donated her long beautiful hair to cancer patients, and on her 9th birthday she donated all her gifts to kids with special needs. Lately, another one of her ideas is to use her singing to spread joy on some social media sites by dedicating songs to others who happen to be facing a challenging time. I believe it’s her way of feeling helpful to others within the capabilities of her young age. I also have to admit, she does have a wise talent in her choice of lyrics and music. When I’m frustrated and struggling to accept the reality of her disease, she calms me down and gives me hope when she tells me that one day she will become a scientist and find a cure to Erythromelalgia. I can’t but believe the sincerity in her voice and the determination in her eyes. She has already made up her mind that once she finds a cure, it will be for free and she wants to travel the world to give it to others. Sounds like a plan to me! That’s my girl, the girl on fire, my warrior princess.

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How to be Supportive to a Person in Pain

 

Feeling physical, emotional or mental pain is consuming and draining. Having a positive attitude towards the different burdens and challenges of life is not easy, at least not for everybody. Sometimes, you can’t but be focused on that pain. Since Lynn was diagnosed with Erythromelalgia, I got random advice, some are good and some are not so good. It’s during such challenging times that you truly learn who are the people who really love you and want to support you. And don’t be shocked when suddenly your circle of friends and family, shrinks and gets smaller with time. But to the people who truly want to be supportive and helpful, but might be at loss of words or ideas, I say this: Measure your words and actions wisely and sensitively.

The most provocative of all advice to me is when a friend or a family member has nothing to say but “count your blessings” and then silence. Another one is, “ be grateful”, followed by silence again. That’s it! Seriously, that’s your big advice! You can’t just drop those words on a person who was just diagnosed with a rare disease. You can’t say that to someone terminally ill. And certainly not to a mom of a special needs child who is having a huge meltdown in the supermarket. Those are not the words someone would want to hear when they just got an amputation or just lost a loved one or barely made it out alive from a war zone. There has to be something more appropriate to say or even do. The awesome people who have been supportive to Lynn and myself inspire the following tips. They are our blessing and to them we are grateful.

1- Be sensitive when offering advice. Let it be meaningful and out of your own experience and not just a repetition of cliché words.

2- Be patient enough to learn how to become one of their blessings.

3- Be their advocate. Be informed and learn about whatever they are facing.

4- This is about their pain. Don’t belittle their suffering. Acknowledge their pain, and please, just please, don’t try to convince them that you or someone you know has got it worse. This is not a competition.

5- Sometimes, the least you can do is be a listener or you can just offer them a shoulder to cry on.

6- Don’t give up on them, even when they don’t answer your calls or texts. Keep trying. Let them know you are thinking of them.

7- Offer your skills. Cook for them, babysit their kids, drive them somewhere, be with them at their next doctor’s appointment or do their supermarket shopping. Never underestimate such small acts of kindness.

8- Allow them to grieve and when the time is right, help them take a step back to have a different perspective. When someone is aching, they are mostly focused on that pain and it’s a vicious cycle that creates more pain. You can offer to take them out, or bring up something new to their attention. Be a distraction.

9- Offer them a gift, no matter how small or symbolic. Everybody loves unwrapping gifts; it’s guaranteed to put a smile on their face. Maybe you can even write them a poem or dedicate a song to them.

10- Show them that their pain doesn’t define them by making them feel useful and important. Involve them in your life by asking them for their opinion or advice.

 

 

 

When Life Gives your Child a Rare Disease

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Most people, who go through hard times, are familiar with the expression “When life gives you lemons, make lemonade”. My question is, what do you do when life gives your child a rare disease?

A year ago my beautiful and smart princess Lynn, had her first Erythromelalgia symptoms, right after her 8th birthday. Needless to say the whole experience has been very painful and challenging for all of us. The most painful of all was realizing that this is a rare disease that has no cure whatsoever. What’s even more devastating is the lack of an effective treatment to alleviate the daily pain she lives through. While Lynn lives through the physical pain, I live the daily emotional pain. I have to watch my daughter ever so helplessly without being able to take away her pain.

A mother’s role is hard enough, but it is a role I cherish dearly and I find great pride in it. The fact that doctors know so little about this rare disorder has definitely made my role more challenging. I don’t know what to expect, because doctors know so little, they have no efficient advice for me. I have all these questions that doctors cannot answer. I remember feeling terrified when Lynn’s symptoms were first misdiagnosed as an allergy. I was thinking about all the new nut free recipes that I would have to learn, the Epi-pen that we will have to carry with us everywhere she goes, of how I will have to notify the school and make sure we travel on a nut free flight. I had it all figured out in my head, because there were clear guidelines to follow, and still I was terrified. But this, the fear of the unknown, the fear of being helpless, how do I face all that? The feeling of guilt is unbearable. I feel guilty for trivial things. I feel guilty for being pain free, while Lynn has to suffer. I feel guilty for being able to wear closed shoes, while Lynn can only wear open sandals. I feel guilty that I can walk while she has to use a wheel chair. I feel guilty for being able to do all the things that she can’t do. Then I wonder about other moms, who have terminally ill children, moms who have lost their kids in sudden accidents, and then I feel guilty for feeling guilty. It’s a vicious cycle that I often find myself stuck in, and I fight to get out of it. I know I have to be a role model for my daughter. I have to be the source of her hope and strength. I try to practice what I preach to her every time she wants to quit. How will I convince her to fight this devastating condition? How will I teach her to count her blessings? How will I encourage her to enjoy the little things in life and embrace the pain free moments? How will I talk her through the pain, if the words don’t resonate from within, if I don’t get off that guilt train that keeps taking me to the ends of this mysterious ride and back? Unfortunately, I don’t have the magic answer to that, but I know that I’m learning from the best, from my warrior princess Lynn. I know I’m fighting my own battles along her side.

I know that when life gives you a rare disease, you can’t give up, you have to go through the ups and downs. You have to get dirty and ugly as you process all the pain and keep going through it day in and day out. You have to feel guilty and blessed and all that is in between. “Keep faith my warrior princess”, that’s what I keep telling her and myself. Patience is a learning process that has many devastating moments hidden along the way.

It Will Grow Again, It’s Just Hair

At 20 weeks of pregnancy I was scheduled for an anomaly scan, which is a routine detailed ultrasound. The two previous ultrasounds were 90 to 99% sure I had a baby boy; only I was secretly dreaming of a baby girl and when the anomaly scan confirmed I had a girl, I was flying with happiness. I still remember very clearly how the first thing I did after that appointment, was go to the nearest baby shop and I bought all the cute baby girl headbands and small stick-on bows that I found. From that day on, I started dreaming of my baby’s hair and how I would enjoy brushing and styling it everyday.

True enough, for 8 years, I enjoyed brushing and styling my Lynn’s hair. It made me happy when she’d come home from school to tell me that her friends and teachers complemented her on the new hairstyle. I could see her eyes twinkle when she reported “ Mommy everybody likes my new hairstyle”.

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Lynn’s different hairstyles during different occasions
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A fishtail, ‘My Little Pony’ , and Anna’s (Frozen) hairstyles

It is pure joy for me, to take care of my daughter and anything related to her. I didn’t mind waking up at 5 am to prepare her lunch bag and do special decoration in her food. I made sure her school costume was always clean and ironed and sprayed with a refreshing fragrance. I loved to tend to the small details; like keeping her pencil case clean and refilled, laminating her books and copybooks and customizing her name tags. So styling her hair was a big deal for me, more like a pure enjoyment.

Lynn loved her long hair and she always shared new styling ideas with me, but the past few months, I hadn’t been able to style her hair because she had become very sensitive to touch. Her recent diagnosis with Erythromelalgia aka “the man on fire disease” has imposed new challenges to her overall lifestyle. Washing and drying her long hair would mean a long episode of burning pain to Lynn, because the temperature change would trigger her body to flare. The flares in her scalp made it red and sore, so brushing or tying her hair was very painful, let alone styling it and adding pins, bows, or elastic bands.

IMG_20160604_015405On weekends, Lynn loved to sneak into my bed in the morning and have some “girly talk” like she called it. A few weeks ago, as she lay in my bed, cuddled next to me, I softly caressed her hair. She looked up into my eyes and said “I miss having you make new hairstyles with my hair mommy, you are so creative”, choking with tears I replied “I miss that too baby, and I’m sorry that it hurts so bad” and I hugged her tightly. At that moment, she jolted up straight in bed and said, with a huge smile on her lips and twinkling eyes, “ I have an idea!” I asked what was her idea, and she surprised me by saying that she wanted to donate her hair to sick kids who have lost theirs. Honestly, her suggestion took me by surprise, and I wasn’t ready to let go of my baby’s long beautiful hair, and I was also afraid she might regret cutting it later on. The past few months she had given up on a lot while we traveled looking for a diagnosis and a treatment. She had already left behind her home, school, teachers and friends, and given up on ballet and piano. There had been too many changes and forceful sacrifices because of her EM, her activity level was impaired, and so were her sleeping and eating habits. I tried to talk her out of her idea by suggesting she should wait till her hair was longer. I tried convincing her of alternative methods that are less painful to brush and style her hair. All to no avail! She had made up her mind. She said one sentence, and I caved in. “ Mommy, I think it is time another girl enjoys my hair, I’ve enjoyed it long enough, let’s give hope to others who are in pain like me”.

At the age of eight years and a half, I watched my daughter donate her long beautiful hair to kids with cancer. The hair that I loved to style and brush for all those years and smell every morning and evening, Her sentence kept playing over and over in my head; her hair will now go to another little girl and make her smile despite the pain. The hairdresser lady and the people waiting at the salon congratulated Lynn for her kind heart. I felt so proud of her for having the early wisdom of wanting to spread hope to others who are also in pain like her. I was so proud that her pain only brought out the best of her. Lynn was smiling through out the whole process and despite the flare she had at the hairdresser she refused to stop. After leaving the hair salon, she proudly said “ it will grow again mommy, it’s just hair”.

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You can read this post on The Mighty site at the following link:

http://themighty.com/2016/06/young-girl-with-erythromelalgia-decides-to-donate-hair/

Interviewing Erythromelalgia

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Over the past eight months I have been replying to messages of family and friends around the world and basically functioning according to two different time zones. Answering questions about EM has proven to be hard. How can you explain about a rare disease that even doctors find hard to explain or understand?!

So one sleepless night, a conversation haunted me. I had been thinking how little awareness there is about Erythromelalgia, which is the main reason it often goes undiagnosed. What if EM was given a voice? The following fictional interview with EM is the result of that long sleepless night.

 

Reporter: Hello and thank you for doing this interview.

Guest: Thank you for inviting me under the spot light.

Reporter: Do you mind telling our readers what’s your full name?

Guest: Erythromelalgia but people call me EM for short

Reporter: Oh what an interesting name! How old are you EM?

Guest: Well you wouldn’t believe it if I told you, but I’ve been around since the late 1800’s.

Reporter: No way! I would have never guessed! How come you are not so famous already?

Guest: I’m unique I guess. My talent is so rare not so many understand it, not even experts!

Reporter: For those who don’t know about you yet, can you share with us your talent?

Guest: (smirks) I was hoping you would ask. I can make people flare.

Reporter: Flare?! What’s so special about that?

Guest: Flaring makes people burn alive in their own skin, without even knowing what hit them.

Reporter: Ohhh!! That sounds intense!

Guest: It is very much so. The trick is causing them to flare badly, until they give up everything to me.

Reporter: Uhmmm…Can you be more specific?

Guest: Easy, I start by flaring their limbs until they give up their mobility and sleep, then I let my fire rage all over their body until they give up all hope in life.

Reporter: Annnnd why do you do that?

Guest: Cause no one has stopped me yet.

Reporter: On whom do your tricks work best?

Guest: Everybody! Flaring affects babies, kids, teens, adults and elderly of both genders.

Reporter: Do you think there are other talents out there that can match yours?

Guest: You will have to ask NORD about that.

Reporter: What’s NORD? .

Guest: National Organization for Rare Disorders/ Diseases.

Reporter: (feeling uncomfortably hot and flaring red) Excuse me I’m going to have to end this interview short, I don’t feel so well.

Guest: (smirks) No problem at all, I have that effect on people.

The Warrior Princess Behind The Lion King

Every mom is proud of her child when he or she is part of a school performance; whether it is a music show, a dance show, or a school play. Along the years, I’ve seen Lynn perform on stage during many occasions. It all started with her first nursery graduation, kindergarten graduation, the end of year school play, several ballet shows, and music shows. I’ve always been that proud mom who is crying tears of joy behind the camera. I loved seeing her talents blossom year after year. She never had problems performing in front of a small or a big crowd; in fact she was a natural and owned the stage every single time.

This year was a bit different. Towards the end of the first school term, Lynn started having her EM symptoms. Not a single doctor in Dubai was able to diagnose her; EM being the rare condition it is. So we set on our journey to Canada and the States to find a doctor who is familiar with EM. Flying from Dubai to Canada on a nonstop flight would take 14 hours. However, with the swelling in Lynn’s feet and the continuous flaring, I doubted she would be able to handle such a long nonstop trip. So our flight to Canada took 24 hours and a half, in total with the lay over time. It was rather a very wearisome trip. We arrived to Canada, just before Christmas, and we stayed with my parents in Toronto. I was hoping that being with family would help distract Lynn from her pain. For weeks, we waited for replies for referral to see any pediatric neurologists familiar with EM. I had no idea that being on the waiting list would mean Christmas and New Year would pass with no replies. The cold weather in Toronto has suited Lynn, and her flares were less severe than before. The second school term was about to begin and I wasn’t going to return to Dubai without a diagnosis or a treatment plan. International patients often have to wait long to get a referral. I wasn’t ready to let EM win yet, so a decision was made, Lynn would continue her school year in Canada while waiting for a referral.

Lynn joined a private Montessori school, and the administration and staff were informed of her health condition. The school campus was small compared to her school in Dubai; there were no stairs or long hallways and that made it easier for her to move around without the need of a wheel chair. The school made it easy for her to call me during the day whenever she flared, and she was allowed to rest outside the class and be exempt from doing gym. The daily struggle was evident and she missed many days of school and worked from home. March break was one week around the corner and we still hadn’t heard from any hospital. Lynn had passed the second term with remarkably high grades despite her struggle, but she was getting physically weaker by the day. I prayed hard, I prayed bitterly, I prayed heart brokenly, I prayed while pleading and begging. My prayers were answered on the 21st of March, after five months of waiting. Mass General Hospital in Boston, replied and Lynn got an appointment with a pediatric neurologist familiar with EM. We flew from Toronto to Boston, and Lynn’s EM was confirmed. The doctor explained all there is to explain about EM and made sure we understood that there was no cure for this rare condition; that the treatment would be by trial and error and entails many side effects. Lynn understood it all too well for her age. Her hopes of any cure were crushed, but her determination to be back to school grew stronger. She wanted to face and fight EM her way, among  her new friends and new teachers. She wanted to hold on to being a normal kid for as long as she could.

We decided that Lynn should finish her third grade in Toronto. It hadn’t become any easier after the diagnosis, and Lynn’s determination was tested daily. Her activity level has gone down to zero. Her diet was so limited and her sleep was constantly interrupted. However, she’s the warrior princess who decided to fight EM by auditioning for the end of year school play. She was excited yet skeptical. I encouraged her to audition because I believed it would do her well psychologically. Imagine my surprise when one day she returned from school to inform me that she nailed the lead role in The Lion King. She never told me she auditioned for the lead role! Apparently, she auditioned for more than one role, because she felt the experience of it would be fun by itself. She got the role of Simba and she was ecstatic with joy.

The weeks passed by and the warmer weather and the pressure of the rehearsals were taking their toll on Lynn. Her flares were recurrent and daily. Even during flares, she rehearsed her lines in bed . She memorized her part and those pf her friends all so quickly. Four days before the play, she had a very bad flare that affected her throat and she lost her voice. I did all that I could to keep her spirit high, but her anxiety level was higher. Thankfully, her voice recovered in time for the play.

Last night was the big night! Both the kids and teachers were anxious. The teachers worked so hard and wanted their students to show their best performance to their parents. Some kids were anxious about forgetting their lines, others were worried their voices were not loud enough. Lynn was worried because of her flares. I was allowed to stay during the final rehearsal because Lynn was flaring badly all day long; her hands were burning and the same applied to her feet and ears. Lynn held on to ice packs to cool her hands, and I helped raise her feet high off the ground, in between acts. She was in pain, but she suck it up and went on stage. I held the camera and recorded the whole play. I fought many tears during the play; tears of joy, pride and pain. The audience awed and applauded Lynn several times. I kept a big smile, for my daughter to see, while tears of joy ran down my cheeks. I was so proud to see her perform so sincerely, and to hear strangers comment on her natural talent, but I was also aching for her pain. Only my eyes would notice how she held her hands in pain during some singing scenes, and how she jumped off her feet behind the curtains because the pain in her feet was unbearable. She also came off stage during the intermission to take her remedy to help go through with the play. She didn’t forget a single word, and she hid her pain so well that her performance was truly impeccable.

Once again another show performance, and I’m a proud mama as always, only this time for different reasons. I’m proud that my daughter is such a strong fighter. I’m proud she let her determination beat her pain. I’m proud she pushed beyond her limits and excelled. I’m proud that my warrior princess was Simba of The Lion King.

This post is published at The Mighty and available at the following link:

http://themighty.com/2016/05/when-my-daughter-with-erythromelalgia-performed-in-the-lion-king/

 

 

 

How I Became the Firefighter Mom

photogrid_1460005420803It doesn’t take a genius to understand from the name of my blog that I am a Mom.
A Mom to a very special girl!

Why Firefighter? Well that’s what makes my daughter special. My daughter is the Girl on Fire, and that makes me the Firefighter.  I can already imagine the confusion on your face. Allow me to explain. Take a deep breath and be ready for a firestorm! This won’t be one of those mommy blogs written to share motherhood advice and anti-anxiety tips. In fact, it is a challenging blog. I will invite you to our daily challenge, which will challenge your mind and heart on many levels.
Your first challenge will be to spell the following word: Erythromelalgia! Try it! Nope! Too tongue twisting, no worries, try EM for short.
EM is that special condition that has transformed my daughter overnight into the Girl on Fire and consequently, I became the Firefighter Mother!
Shortly after her 8th birthday my Princess, started complaining from pain in the bottom soles of her feet. The fact that she practiced classical ballet twice a week, made me think it must have been all the new steps she’s learning. Within an hour, the soles of her feet turned bright red and she was screaming! Allergic reaction you say? Aha! Her Dad and I thought so too. Easy, call the pediatrician and get the Benadryl ready. Sure enough, the doctor recommends antihistamine for few days. But Mommy had a hunch! A bad hunch! This doesn’t look like an allergy, and if it was, I want to know what caused it. Besides, there was no itching, no trouble in her breathing, just her screaming of burning and pain in her feet. We went to the nearest Emergency Room which was five minutes away, and I took the Benadryl and Epi-pen with us in case things got worse on the way. Yes mommy has an extensive medical kit ready, thanks to previous experience that taught me to always be well prepared.

That ER visit was to be followed by many more over the course of 8 weeks. Her allergy tests were all negative. The highest doses of antihistamine and painkillers were not helping. The redness and swelling has spread from her feet upwards, and the pain was strong enough to keep us awake all night and day, while she kept screaming and crying about the burning and pain. There was a fire in her feet and hands, a fire burning her body, and no I do not mean a fever. The redness and swelling kept dancing around her skin randomly, literally from head to toe, as if owning her body. The Emergency Doctors had never seen anything like it. I took her to more than one Pediatric Allergist, and to a Dermatologist, but none was able to give a diagnosis. Always ended up with “possibly an allergy”. Antihistamines, Cortisone, Pain Killers, nothing helped.

That’s when I put on that Firefighter Hat on. I was determined to find a diagnosis. I took pictures of her feet, hands, ears, neck, shoulders, face, thighs, anywhere the redness showed. I sent emails to doctors, of different specialties around the world, either directly or via family relatives, with a short case summary, recent blood tests and the pictures. And I waited and waited for any reply, that would be of an explanation.

Her skin was dressed in red for hours, it would cool down for an hour or two, only for the fire to rage again for many more continuous hours. I put the Air condition all over the house on the coldest temperature, day and night, until it felt like we were living in an igloo. She dipped her feet and hands in cold water to keep them cool, but I had to change the water often because it would turn hot a few minutes after her burning skin came in contact with the water. The heat radiating from her skin was so prominent, that I could feel it from a close distance. The doctors were still treating her for an allergy, but I knew it wasn’t, not after weeks of sleepless nights.
Frustrated and feeling helpless, I googled burning feet and hands. BINGO! Erythromelalgia. The Man on Fire Disease. A rare condition, but the description, pictures and symptoms, were a perfect match.
Mommy was relieved, I found a name for her symptoms, all we needed was to find the medicine for it. Little did I know, I will be wearing that firefighter hat far much longer than I thought. There will be no one single medicine, for there was no cure! My Princess has just turned 8 and along with it she was doomed to a life of burning alive. Her 8th birthday gift was the title of a Warrior because Erythromelalgia or EM will make her body flare and burn almost every day and night, and she will have to face it with no cure.

Our journey to get a formal diagnosis from a Doctor who is actually familiar with EM is about to start. Our hope for a cure is our new driving force, and it shall be stronger and brighter than any burning fire!

For more about Erythromelalgia please check The Erythromelalgia Association website on the following link: http://www.erythromelalgia.org