Tag Archive for: chronic disease

F Words in Rare Disease

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A dad I know recently posted a photo and shared his excitement on Twitter about a new set up for his bike with a trailer for his son. Its overall purpose being an opportunity to do more stuff together as a family. I wholeheartedly shared in his excitement as I too had been putting money aside to find more opportunities for my own family to get outdoors more. Both of us are parents of children who were born with a rare diagnosis. Our kids have different rare diagnoses, but like all families we are eager to connect with the greater world around us and share it with our kids however we can.

My own kiddo is going to be thirteen this year, and we are at a turning point in the discussion of overall health. We are off-book and off script as there’s nothing that clinically describes this age range for his specific diagnosis. Anecdotally, he seems to be following his own trajectory for some inexplicable reason deviating from other children I know with this diagnosis. I’m at the hospital more professionally than I am as mom of a patient which to some audiences the reaction is, “Yay! Your family gets a break! So everything is fine now, right?”. The reaction from fellow parents of palliative patients is, “I’m so sorry”, because they realize the fight is over. That life is going to do whatever it is its going to do. The hospital is still there if you need them, but your frequent family vacation time at “Club Med” is to be replaced with a new family dynamic and new identity as take a go at life more on your own.

Health care is quickly deviating from textbook, generalized care to something highly individualized. This in theory is a great concept but is extraordinarily multifaceted in its impact on patients affected by rare disease. As someone who manages a support group of over 800 patients and caregivers from my home province, I find a deep desire to ask in some capacity whether we are prepared for the pace of advancement. A long-term goal I have in mind is to create a biopsychosocial assessment of the needs of families. For now, I can say for as much new information as I bring to the proverbial table, it’s so often met with, “How do I fit this into my complex world?”.

I hesitate to use the term ‘finding balance’ at all, because if there’s one thing I think many of us rare patients and families experience is more of a need to manage random health chaos. The status of my own family can shift on a dime and you have to learn to be very much ok with that because you have no other choice than to.

So how does one even begin to manage understanding how to frame your life and all the decisions you have to make? For a little over four years, I’ve been working as a parent researcher and engagement facilitator with a focus on the subject of childhood disability. One concept we often speak on is the World Health Organization’s International Classification of Functioning, Disability Health. A simplified version of a very technical document is called “The F Words in Childhood Disability”. Now these are concepts that I wish to argue merit for as a way to create form to thoughts and efforts that you are probably doing already. At the same time, it can become very validating and empowering to realize that current evidence points to the fact that you are already on the right track. These are ideas upon which a potential framework can be created in your own mind as to goals that can be accomplished, or a way to weigh decisions that need to be made. We are often so focused on the burdens of disease, that we need a compass of sorts to point us back to the idea that life is happening around us and time can often be a precious commodity. They are six words that reflect the story that’s unique to you or your family and nobody else.

Function

There is often a need to perform tasks in ways unique to their own abilities. If independence in some areas can be fostered, we need to be able to honor that.

Family

Family isn’t always about people you are genetically related to. People react to the idea of illness very differently and in some cases, you need to seek community and “family” elsewhere. Regardless, the people in your life that you surround yourself with are people that are important to you. It’s important to listen to them as they know you best.

Fitness

As a post-cancer “spoonie” myself, I often bristle a bit on this subject. Between my own struggles with energy and the physical impact of caregiving, I’ve found it difficult to find the energy to be healthy. However, your story isn’t my story and in reality it can be intensely difficult to find ways to be healthy. In the area of rare disease, I think health becomes a broader term by definition: overall health takes on many forms be it mental or physical health. We often term health as some sort of fitness guru Instagram aspiration, but sometimes overall improved health comes from even the tiniest of steps and even the little efforts deserve to be celebrated in a huge fashion.

Friends

Existing around peers can take on many forms, and in order to do so sometimes we need to be brave and reach out to others for more accessible ways to connect with friends. What can’t be ignored is a human being’s overall need to connect with other people as we learn and grow together.

Fun

In a world that can be taken up so much with appointments and treatments, its so important to stop every now and then and have fun, be silly, briefly escape the world and just plain live. Fun can take on so many different things.

Future

So much definition of future is often left to the financial planners of the world in regards to careers, academics and whatnot. Sometimes the future is only planning ahead 15 minutes at a time or a week from now. As hokey as it sounds, with age I’ve begun to see the value and emotional weight the phrase “one day at a time” holds in my life. I’ve been asked more times than I can count as to how I picture my family’s future. My response remains that I really am not gifted with that luxury, ask me what I’m working on for tomorrow.

I have seen these terms be threaded through my life in so many ways. Sometimes you are only focusing on one F word at a time and there’s no judgement in that at all. I like any other mom am someone who struggles with whether or not I’m doing a good job. I think the gauge by which I measure this is probably unique to my own personal story but I know that I am not alone in this feeling. I feel though with the F words, I have a more confident platform to stand on not to be his voice but to be his microphone. There’s so much I can’t control in life but as his mom I want to help him own every second as his life to live. So in celebration of birthday number 13, we’re taking “fun” as our next goal and bought a bike trailer too! I know he’ll love it.

A Journey of Resilience

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Nothing in life can ever prepare you for the news of a life changing illness of any type. This was the case in 2006 when I was diagnosed with Complex Regional Pain Syndrome or CRPS for short. A rare neuro-autoimmune disease that causes constant chronic pain and can also affect the immune system, skin, muscle, joints, and bones it is known as the most painful chronic pain condition there is. The other name of which people refer to CRPS is “the suicide disease”, for which no explanation is really needed.

I live in Regina, Saskatchewan. If you don’t know where that is that’s in Canada. As a happily married father of two very special girls, family life was everything and more leading up to diagnosis. I held a position in senior management with a large company and my wife had decided to leave nursing to pursue her desire of being a stay at home mom. Life was good! Then our world was suddenly flipped upside down as a simple surgery to remove a cyst in my left wrist went really wrong.  Immediately after the surgery I started experiencing a burning in the arm. Not to mention the severe pain and swelling that was going on. Something was very wrong and the pain getting more unbearable by the day.

This would set off almost an almost two year journey into trying to figure out what was causing such horrific pain. I also began to display numerous other symptoms associated with CRPS. Symptoms like sensitivity to touch and temperature, waxiness of the skin, hair loss, and disfigurement to name a few.  Eventually, I would visit upwards of twenty physicians being tested for every disease you could think of. Yet no physician was able to make any form of a diagnosis. Without answers trying to treat this disease was difficult. Eventually, I was unable to use my hand at all, and the pain left me unable to function on most days. So I would be forced to go on permanent disability.

After virtually exhausting all the resources within Saskatchewan I would have to seek help outside the province. With paperwork already filed with the Mayo Clinic and preparations being made to go, we received a phone call from a friend who is a physician and knew of a specialist who specialized in chronic pain. We flew out to Vancouver, B.C. where the specialist was able to make the diagnosis of CRPS and tell me there was no cure, and that there was very little he could do to treat me.  As I walked out of his office I remember being hit by a wave of emotions!  Suddenly everything was becoming so real. Things like fear and anger were trying to take over my mind. I didn’t know what to feel or where to turn next.

As if this wasn’t enough, after an injury to my ankle CRPS spread into my left ankle and leg. This would eventually mean that I would need to use a cane to walk at all. To say the journey up until this point was frustrating is an understatement! Not wanting to focus on the negative however I remained optimistic in my pursuit to find the help I needed. Through a series of tests that I would have in order to try and manage the pain in my leg, I would finally find a specialist who could help with a treatment plan.

It had been almost two years up until this point but I finally felt as if there was a little bit of hope that something could be done to help me manage this disease. I had finally been referred to a neurologist who works with a small team of professionals who worked with CRPS patients. This is the part of my story that I get so frustrated with because we had gone full circle only to end up right back here in Regina. Had other physicians or specialists been more aware of CRPS then quick diagnosis could have happened.

It was refreshing finally having a team of healthcare professionals who truly understood what I was living with. The goal was to try and help me gain back a quality of life I had lost and maybe more. So over the course of the next several months I would form my treatment plan which was to be a combination of medications and surgically implanted neuro-stimulators.  After ten major surgeries and extensive physiotherapy I started walking short distances. I also started working with a psychologist to try and help with aspects of my mental health that I was struggling with. These were both positive steps and gave me the motivation I needed to keep moving forward.

As I started coming to terms with everything I was going through with this disease I began to see that I didn’t have to let it hold me hostage. Sure, things might be good one day and bad the next but I could chose to be positive and move forward to the best of my abilities. I had to ask myself a really hard question. Was I going to let CRPS define who I am or what I can do with my life? There was still so much about my life that was so good! I was just having trouble seeing that through all the emotions. Once I figured all of that out, it made moving forward so much easier. It was at this point that I decided to start using my story to help others and to advocate and raise awareness.

There are so few resources available to those of us struggling to find diagnosis, treatment, or even support programs with a rare disease like CRPS. So in the middle of the night I wrote a letter to our Premiere outlining my story, similar to the one here asking him to declare Nov 2 CRPS Awareness Day in the Province of Saskatchewan. The goal of this was just to do my little part here in my part of the world. Before long this was in place and I now have a yearly event taking place. Right here in my city we have had Feb 28 declared Rare Disease Day, and I have started a Peer2Peer support group through the Rare Disease Foundation. I speak at, and attend conferences across Canada and the U.S. in order to try and raise awareness and create change. Those efforts are making a difference because here in Saskatchewan with the efforts of CRPS Awareness Day we have managed to see changes in the teaching curriculum for second year med students.

Trying to fit thirteen years into what I’m writing today isn’t easy because it would take a book to try and explain all the different ways that chronic illness affects an individual’s life. My story that I’ve outlined here for you today, really only touches the tip of the iceberg when it comes to what my family and I have had to endure. However, I’m choosing to see only positive and the things that bring me hope in my particular journey. Things like the levels of awareness that have been raised within my community and province. Or the personal friendships and support from different communities that I have gained along the way. I can’t say what will happen down the road but there are a lot of things that are in our control. What choices will you make?

Everything You Need to Know About Dating with a Chronic Illness

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If you live with a chronic illness like pulmonary fibrosis, diabetes or Crohn’s disease, your dating life is going to look a little different–and that’s okay. Being single and navigating the world of dating is challenging for everyone, but it can be especially difficult when your life comes with complications like needing to pack medication every time you leave home for more than a few hours.

Finding someone who shares your interests and who will support you through life’s ups and downs takes time, so be patient and have fun. Whether you choose dating sites, singles events, clubs or meetups, putting yourself out there will help you find that special person who will love you unconditionally–even on your worst days. If you are single with a chronic illness, follow these tips to make your dating journey a little easier.

Be Upfront About Your Illness

Deciding when to disclose your illness to a potential romantic connection is entirely up to you but consider telling them about it at the beginning of your interaction. It can be difficult to open up about something so personal to a stranger you don’t know and trust, but it can help you weed out people who aren’t worth your time. If someone isn’t going to accept all of you and love you the way you are, that person isn’t worth dating.

If you are anxious about discussing your illness with a date, why not use technology to your advantage? Tell them about it over an email, text message or phone call. People’s first reaction when they find out about your illness may be shock or discomfort, so allowing them time to unpack that information before you sit down for a date can help you both decide if moving forward is right. Plus, by the time you meet up, they’ll have had a chance to let it settle and come up with meaningful questions they have about your illness and how it affects your life. Being upfront is scary, but it’s an incredibly helpful dating tool.

Highlight Your Best Assets and Don’t Be a Victim

You’re going to be just as self-conscious on a first date as anyone, so practice the best piece of dating advice out there and play up your best assets! If your illness has caused some weight loss or weight gain, go shopping for an outfit that fits great and highlights your favorite body parts. Experiencing hair loss? Try a cool hat or an updo. Figure out what you love most about yourself and play up those areas while minimizing the things that make you feel self-conscious. Confidence looks hot on everyone.

People are going to follow your lead when it comes to your illness. The more relaxed you act about it, the better they will feel about it. If you are sad about it, they will feel sad about it. Lead by example and don’t walk around holding up a sign that says you’re a victim. You’ve got to love yourself before anyone else can love you–with or without a chronic illness.

Be Willing to Adapt

Things aren’t always going to go as planned, so adaptability is key to avoiding some of the frustrations of dating with a chronic illness. You might have just spent hours getting ready for a date and then realize you need a nap. That’s okay. Sometimes your significant other may want to do something your body won’t let you do. It’s going to be frustrating at first, even embarrassing. But once you and your partner learn that plans will sometimes change, you’ll see that it doesn’t need to affect your relationship negatively.

If you have dietary restrictions, consider alternatives to the dinner date. We tend to have it hard-wired into our brains how a date should look, but quality time can be spent in many ways. Do something outside, enjoy the arts, see a movie and pack your snacks from home. Who cares if your dating life looks a little different than it does in cheesy romantic comedies? Life happens and the more willing you are to adapt, the better you can love and be loved.

Don’t Overdo it and Laugh it Off if You Do

Adventure sports or extreme roller coasters might not be the best first date ideas if you live with a chronic illness. Don’t pretend like something is fine if it’s not. If you have a migraine, you’re not going to have fun at a rock concert, and if you are miserable, your date isn’t going to have fun either. It’s better to be upfront about how you are feeling and what you can do than try to tough it out and deal with the consequences later. Pretending isn’t fun and it’s not a good way to get to know someone.

When you do find yourself in a less-than-ideal situation, remember to laugh it off. You’re going to fall sometimes or need to sneak away to give yourself medication or treatment in an awkward way. Don’t take it too seriously. There are many circumstances you go through with a chronic illness that are silly and it’s best to laugh about them rather than make them a big deal.

 

Recognize When They Aren’t Worth Your Time

Some people just don’t have what it takes to handle someone’s health issue. Some people lack empathy or don’t have the willingness to nurture others. If someone is insensitive, rude, describes you as “difficult” or their lifestyle contradicts yours, you need to let them go. People who are worth your time and energy as a friend, let alone a potential romantic partner, will understand that you have good days and bad. They won’t ever fully understand what you go through, but they’ll want to try. They’ll be respectful, supportive and loving.

Remember You Are Worthy of Love

Don’t define yourself and your personality by your illness. You are a person, first and foremost, who happens to be sick. When you stop thinking of yourself as an illness, others will, too. You may have certain limits in life, but that doesn’t make you less worthy or capable of love. Not by a long shot.