Q & A: Chronic Illness Edition Part 2

7. What do you wish people knew most about living with chronic illnesses? – Rebecca Lenio

That it’s not a one size fits all deal. That not all disabilities are visible. That just because something worked for your uncles-cousins-sisters-mothers-friends-aunts-daughters-step sister, doesn’t mean it will work for me. That no, getting out more wont help my disease. That taking medication isn’t why I’m getting sicker. That even though you may believe you do, you don’t understand my condition better than I do. That if I could be out there going to school, living with a full-time job I would do it. That I didn’t choose this life. That I don’t need sympathy, I need empathy. That just because I can’t always come out when you ask me to, doesn’t mean I will never be able to. That just because I can’t do what you can do, doesn’t mean I don’t want your friendship. That just because my reality is different from yours, I don’t expect you to know what to say, or how to fix me…I just need a friend. 

8. What kind of treatment are you using? Have you tried a C.D.I. (Continuous Diphenhydramine Infusion)? – Jennifer S. Lockhart

I haven’t tried a CDI, in Canada or at least here in Toronto my specialists haven’t heard of it and aren’t on board with it yet. They struggle with the idea of giving out IV Benadryl at home, but I work with a doctor in Boston who is helpful in giving ideas to my current specialists here. It may be something that would be really helpful for me, quite a few of my friends are using it and they seem to benefit from it. 

I receive ketamine infusions for my Complex Regional Pain Syndrome. I’m currently in the maintenance phase where I get a 2 day low dose infusion of ketamine in Boston every 4-6 weeks and I’m waiting on an admit date to begin high dose IVIG. I trialled Xolair but went into anaphylaxis within the hour of receiving it. 

9. What is your daily routine to keep you on your feet, and as positive as you are? – Helena Summer

Truthfully I should have a better daily routine, or even a routine at that. I fall asleep when I should be waking, and I wake when I should be sleeping. I take each day as it comes, and do my best to keep up with the plans I make but truth be told I don’t know what each day holds so I make sure to start and end each day with a grateful heart as a reminder to be grateful for the simplest of things. Before I get out of bed I list 5 things I’m grateful for in that morning, and before I get back into bed I make sure to write down as many as I can. That way even if I am bed bound that day, or unable to make it out of bed I know that there is something to be grateful for, or to look forward to. 

My weeks consist of many appointments but I make sure to include at least one item of self care, physiotherapy, massage therapy, accupuncture, therapy, and at least one session of yoga. I’m learning that it helps not only my physical symptoms, but my mind as well.

10. How do you manage your mental health? – Mikayla Hartney

Mikayla, I wish I could tell you that I have a solid grip on managing my mental health but I don’t. When I grow vulnerable or depressed, I block the world out. It’s a fear of mine to show the world myself when I’m the most vulnerable, I’m not sure why but I don’t want the world to see me at my weakest but that’s what you should show the world. When you’re most vulnerable and scared, that’s when the world needs to see you if we’re going to break this stigma of “mental illness” having the connotation that it does. 

There are still too many days I spend crying in bed, too many nights that I fall asleep in a pile of tissues. I try to match every negative thought with a positive, but most days that’s unrealistic. I’m currently in a program filled with amazing therapists and psycologists that are working to help me cope with my pain, and achieve the goals that are important to me. Through that program we work with not only traditional therapy and cognitive behavioral therapy, but we use mindfulness and meditation and I’m learning how to incorporate that into benefitting my mental health. I also recently began doing yoga, I work privately with a yoga instructor who is chronically ill herself so I’m never overworked and she knows just the parts of the mind to work based off of. 

All I can say is that you don’t need to fit societies definition of happy, to be happy. It’s okay to have days that you want the curtains drawn, and you don’t want to speak to anyone. I’m learning that it’s okay to be angry at people, or at situations. I’m learning that it’s okay to not be content with your life, or who you are all the time. I’m learning that mental health is never something that’s really managed because it’s so unpredictable. I used to depend on others to keep me happy and hopeful, but recently when I was left in the dark when I turned to someone when I was in crisis I learned that it’s not a feasible option. Learn to love and appreciate yourself Mikayla, accept that some days will suck, accept that your life may have pain, accept that it will be different and difficult but so long as you do not accept that this will be your reality forever…you are doing just fine. The world works so hard to tell you to be happy, and how to be happy that when we’re left to our own devices and we’re upset we panic because we feel that there’s something wrong with us. There isn’t. Fall, stumble, succumb, cry, scream, yell, but get back up…always get back up. 

11. What have you found to be the most difficult diagnosis to deal with, and why? – Carmen Hartgerink

You know, I guess we can say that I’m fortunate that I didn’t get diagnosed with my illnesses all at once. Things were progressive. I dealt with one diagnosis at a time, so I somehow got to adjust before the next one came. I still struggle with each of them, but the two that cause me the biggest issues have to be my nerve condition Complex Regional Pain Syndrome, and Mast Cell Activation Disease. CRPS causes me incredible pain, my nerves are hypersensitive and always on overdrive so the slightest, lightest stimulus like even air blowing on my arm is interpreted as trauma and painful. When I get goosebumps from the chills I feel like I’m getting stabbed by thousands of little needles in my arm. It’s not the pain that makes it quite so difficult…but the fear associated with it. When I’m in large groups, or busy areas I break down into tears and panic attacks out of fear that someone is going to accidentally hit my arm and cause me pain. It’s not a second of pain, it’s not a flash of pain, it means at least another few days of burning, stabbing, searing pain that leaves me shaking and in tears and it contributes to the fear of the next time I’m stuck around other people. It’s something I can’t control. 

Mast Cell Activation Syndrome is a condition that basically makes me allergic to life, the cells in my body that cause allergic reactions are always leaking the hormones that mediate allergic reactions and are set off by minimal exposure to things like emotions, temperatures, smells, foods, medications, materials, virtually anything can send me into throat closing anaphylactic episodes. I’ve grown terrifed of the world around me. Anytime I step outside of my house, or even my room I’m at risk of being triggered into a reaction and there’s no telling whether or not that reaction will end with me in the hospital or if it’s something a dose of benadryl can take care of. It’s a scary game of roulette, one that I’d rather not play but I’m learning each and every day how I can live despite these things that threaten my life every day.

12. What is it like to have anxiety and depression, and what are the most helpful things your friends and family can do when you experience them? – Rebecca Lenio

I’m learning that having the two really doesn’t seem to be that much of a rare occurrence. I mean, everyone experiences anxiety and depression at some point in their lives but it really isn’t that rare to experience it chronically and require medication and therapy to monitor it. Though I am on medication for them both, I still live with symptoms that I’m learning how to manage. I want to compare it to that situation in cartoons where the angel is on one shoulder, and the devil is on the other but there really is no angel or devil they both are manipulative and mean. My anxiety makes me panic and become obsessive over mainstream things, I overthink things constantly. If someone doesn’t answer my text I’m already convinced that I did something wrong and our friendship is over, when the case may be that that person is just busy. But that’s when my depression steps in and says, “oh no…it’s you. it’s always you! No one can stay around you, people are tired of you, they’re fearful of you, no one has time to deal with someone with so many issues. It’s pathetic that you even expected company, how dare you?”. Often times it will go back and forth, and that happens with every situation but my amazing team is working with me to help stop myself from the second I feel my heart flutter and I start to go into panic so I don’t always get to rock bottom these days. 

I love that this is a question you asked Rebecca, even though you already do so much for me and know so much about how I work you continue to try and understand and I appreciate that. Anyway, I think the number one thing can be to listen. Just listen. When I come to you in tears, I don’t always need a rational answer and explanation to my situation that may sometimes clearly sound deranged to you. I need you to hold me while I cry, to rub my back, and to tell me that it’s okay, that I’m okay. Or if I come to you when I’m anxious, ask me if I’d like to talk about it and if I answer yes only give me 60 seconds to do so. Allow me to be completely anxious for one minute, and then at that point we can work on deconstructing but sometimes talking about my anxieties makes them more real for me and that can cause a whole lot more issues than I started out with. The biggest thing is to ask, ask before you even ask what’s wrong. Ask before you assume your loved one wants advice. Ask before you assume your loved one wants a hug. For me, I’m a cuddler and I will happily curl up in my loved ones arms any day. 

13. How do you manage food/eating with all your gastro conditions? I hate being sick anyway, can’t imagine more issues. I think so many social situations centre around food and so I can imagine it being hard. Do you miss normal eating or have you never been able to eat “normally”? – Sophie Hobley

Today is one of those days that my shirt keeps popping over my stomach from the bloating. Eating is a challenge, it’s something I wouldn’t do if I didn’t have to…and that’s not because I don’t want to eat. I love to eat, I do want to eat. It’s because I know that once I eat there’s a lot of struggle and a lot of pain to come. I no longer get hunger cues, I rarely feel hungry, I rarely feel “empty”, I rarely have a desire to eat. I sometimes struggle with textures of food, I couldn’t tell you really what sets me off but sometimes it can be something with too many different textures that I don’t like or sometimes it can be something that’s too uniform in texture. It really depends on the day. With my Mast Cell Disease I have to be cautious of allergens in food, and with the way that mast cell works what I ate yesterday that was safe may not be safe today so every meal is always a gamble. I do have my safe foods we stick to when we know my body is on the reactive side, but I generally tend to stay in that range anyway. I’m always advised to eat smaller meals, more frequently but that doesn’t work for me though it may work for you. I eat as much as I possibly can, when I can even if it ends in not so great things. I don’t digest food at a rate that healthy individuals do, that is even more exhasperated by my lack of gall bladder so fatty foods rarely get digested and absorbed and are frequently thrown up. I suppose that’s more than you needed to know, but I do recieve hydration and nutrition through supplementation and IV when I need it!

I can completely understand the difficulty that comes with gastric conditions and social situations, you really don’t realize how much socialization is centered around eating until you can’t do it. But my advice is that as long as you’re cool and confident about it, so will your friends and surroundings. I go out with friends often and will sip on water, or refuse anything that day. My friends usually understand, but for those that are unfamiliar with it I usually just say that I’d rather play safe and not take any risks. Don’t let your conditions stop you from doing anything, explain to your friends that you’re cool with sitting with them. If you want to nibble on a few things I’m sure they wont mind, but if it’s something that really upsets you (and rightfully so! I have those days) then suggest something else, or suggest that they call you after they eat and maybe you can do something before! 

14. Have you had to totally stop dancing? – Shannon Elizabeth Mercier

Unfortunately, I have. With my Mast Cell Disease when I get over heated, I react and that can be anywhere from just flushing and turning red in the face and chest to complete anaphylaxis and I don’t think there’s a special award for going into anaphylaxis mid dance (though if there was, you’d better bet I’d win it). I’m so lucky to still be immersed in the dance community though, and my old dance teachers and studios have always welcomed me back to lay down at the back of the room and just watch the kids run numbers or improv. It took me a long time to get there though, I went through many years where I was bitter and heartbroken that I couldn’t dance and even the sight of a dance shoe turned me to tears but now I’ve learned to combine my love for dance with my illness instead of separating it and I’ve made the most beautiful connection. 

I’m also so blessed because I’m an ambassador for a dance company that fundraises for the child life department at my children’s hospital, On The Floor. Each year they have competitions they hold around the city and then at the beginning of the following dance studio they perform a gala night with dancers they’ve selected from their previous year of competitions, it has a theme and is like a dance show with silent auctions, and hospital ambassadors, and I usually get to speak. It’s my favourite night because I get to watch so many amazing dancers coming together for an amazing cause, and it hits that dance filled hole in my heart. And this year, they changed up their annual Dance-A-Thon which usually is a day of workshops for dancers but in addition to that we also got a bunch of kids from the hospital and made a wicked dance video. I CANNOT wait for you guys to see it! I did get to dance in that, given it was only a few counts of 8 but I did dance. I’ll figure it out one day I’m sure 🙂

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