So for the last 2 years, I’ve been volunteering with the UBC Health Mentor’s Program. The way this program works is that 4 future health care professionals are matched with a Health Mentor who has a chronic illness and/or disability or is a caregiver to someone with chronic illness and/or disability. The program offers students the opportunity to learn about patient-centred care and collaborative care through working with their mentor and fellow group members for a period of 16 months. This program has been accredited as part of their formal education and includes students from the medicine, nursing, dentistry, pharmacy, physical therapy, occupational therapy, dietetics and speech and language pathology & audiology. I am just in the process of finishing up with my current cohort, which is my second group of students and waiting to hear about a third.
These students are so excited and invested in the experience and want to learn as much as they possibly can. What sometimes happens is that something I’ve said really stands out to them as a key piece of learning. Often they will say to me “I remember when you said….” and cite an example of something that hit home for them that they remember. I find it fascinating what gems they glean from our shared experience.
One day I was talking about how sometimes, when I am going through a particularly rough time physically, how onerous it can be to have multiple doctors appointments, tests or treatments in different cities and different hospitals taking up multiple days in a week or a month. It can get pretty overwhelming and leads to what I call “patient burnout”. When I mentioned this in passing to my students that day, it immediately got a reaction. “Patient burnout?!? That’s a THING?!? I thought just doctors got burnout?” This launched a very interesting discussion about how it feels to have to continuosly make myself vulnerable to medical professionals when I’m not feeling well and how emotionally exhausting a period of intense medical care can be. It had never occurred to them that this could even happen or how it might affect patients.
Given how sick I was in August and the fact that I spent 12 out of 31 days at a hospital having either a doctor’s appointment, a treatment or a test I’m feeling quite burnt out right now. I still have 2 more major appointments in the next two weeks to get through and at this point, while they are necessary, I am gritting my teeth just to get through them.
So what am I doing about it? Well one thing I’m doing is putting a moratorium on medical appointments in October. Yes, I am taking the month off. Unless I am bleeding out the eyes (seriously, that has happened to me!) I am not going in. Sometimes you have to say NO to these things in order to say YES to yourself. I am also going on a brief holiday that I booked months ago which now couldn’t come at a better time. I’ll be spending time in the mountains hiking and enjoying a change of scenery with my husband and best dog at my side. That always helps me feel grounded and refreshed again.
Self-care is always a work in progress. Sometimes, when I am in the thick of dealing with medical stuff, I have to just stop, take a breath and ask myself “What do I need right now?” Sometimes I need to call my best friend and vent. Sometimes I need to connect with my support group to know I’m not alone. Sometimes I need to escape to the movie theatre for a couple hours for a mental break. Sometimes I need to put my hands to work in my studio and sometimes I just need a good hug.
I believe our mental health affects our physical health, so the more self-care I practice, the better off I will be. If I feel myself bordering on patient burnout, then it’s my responsibility to take immediate action. Prevention is nine tenths the cure!
There have been various research studies published by the International Committee for the Study of Victimization that look at people who have suffered serious adversity, everything from disease, prisoners of war and accidents and then continue to survive. Their studies have categorized people into three groups: those who were permanently dispirited by the event, those who got their life back to normal, and those who used the experience as a defining moment to make them stronger. I believe they call it the “hardiness factor”.
Over the years I’ve met NMO patients and their caregivers (because disease affects our loved ones too) in all of these groups. To say the first group saddens me is an understatement – I’ve personally come dangerously close to giving up so I completely understand the feeling. In fact, I’m sure I’ve done the range of groups several times over. When I was first handed the diagnosis all I wanted was to get back to normal. To this day I’m still not sure I’ve ever really acknowledged my true feelings about the diagnosis and all the events afterwards. Most days living with NMO is just a forced lifestyle change but every once in awhile I like to push the limits and make a point of trying to live life to the fullest. I know there are other patients far worse than me, some in wheelchairs or walking aids. Having experienced that temporarily I know that could easily be my reality too one day so I in that sense NMO defines me and how I challenge myself.
As of a couple of weeks ago I’ve been sporting this new accessory. My uncle, who just turned 65 yrs old, is a world marathon runner. He encouraged my entire family to participate in a 10k run coming up this fall. When I received the first email from him my initial reaction was that it just wasn’t possible. I haven’t run or even tried since my diagnosis. In my previous life I’ve completed a few runs and I always found it exhilarating. After several more nag emails I thought I’d take our pug for a longer walk and see how that went. Before long I was working through the back pain and I registered both myself and my husband towards a new fitness goal. That went well for several months. I was even running up to 5k regularly every other morning at 6:15am. But then I got brave and stubborn. A combination of limited feelings in my legs and being head strong led to damage in my ankle and this very unattractive air cast for 4-6 weeks.
So here I am 3 weeks before this run and I want it so bad. I’ve taken the cast off at home as much as possible but it still hurts more than I’m willing to admit. I’m a mix of anger, disappointment, demotivation and pent up energy. This will be my third attempt at this particular run having become ill with NMO and bronchitis twice before. And there are other family members registered who I don’t have a high opinion of anymore and I’ll be damned if they run it but I don’t.
This run is personal for so many reasons.
As of right now I don’t know if I’ll get to run it. At this point I don’t feel I’ll be ready. I’m still hoping to try but won’t at the cost of permanent damage. This injury breaks my heart but not for the obvious reasons but because the last several months have been a glimpse of who I used to be and I miss her.
August 23 was the first local patient day here in Colorado hosted by the University Hospital of Colorado. Dr. Bennett and his staff did a great job! It was nice to see new and old NMO family. The Guthy Jackson Foundation helped as well to get this event going. The goal for the local patient days that will happen in five other locations is for patients and caregivers to learn about NMO and to see what the research teams are finding out for any new medications coming down the line. It also so NMO patients can meet each other and help advocate for this disease. The Guthy Jackson Foundation will still hold the national patient day in Los Angeles March 4th 2015.
For this first patient day there was a total of 62 patients and caregivers total. Over half of them this was the first patient day that they have attended. Dr. Bennett was the main speaker for patient day. For people who don’t know him he works with the Guthy Jackson Foundation helping find a cure for NMO he also sees NMO patients at the University Hospital of Colorado. The also had a pediatric NMO doctor there Dr. Schreiner talking about the difference between adult NMO patients and pediatric. Dr. Bennett gave some encouraging news that there were three new medications that they are researching for maintenance drugs for NMO. We also had guest speakers about nutrient, applying for disability, and how to become advocates for NMO. I learned a few new things going to the patient day here in Colorado. But why I really wanted to go that day was to see my NMO family that I always see every patient day and to meet new NMO family members. It is so nice to be around people that truly understand what you are going through and also really care how you are doing. There is a special connection with NMO patients around the world we are not just friends we treat each other like family. I just love when we can all get together and see each other!
I was recently in the Bay area with my husband, John, as part of a fundraising effort for the Guide Dogs for the Blind, a school training labrador and golden retrievers to become working dogs. I led a cooking workshop for the recipient of the silent auction item (a gastronomic evening with me) and her fourteen guests. After the interactive culinary class, we enjoyed the three-course dinner together al fresco at Joan Boyd’s home in Napa, owner of Boyd Family Vineyards.
The day before the dinner, John and I visited the GDB campus in San Rafael. It’s a gorgeous campus—I mean, who can beat that California climate and scenery? (Well, I guess the scenery would be of little value to the school’s human students.) It was nonetheless a nice getaway from the Houston heat, and with wine and puppies, what else could I ask for?
John and I got to experience walking with a guide dog (yes, John was blindfolded). We strapped the GoPro to our heads—the footage will later be made into a Blind Life YouTube episode. Best of all, we had puppy playtime! How could you not love those pups pictured above?
A future guide puppy is specifically bred and born in-house at GDB. At about 12 weeks, they meet their raisers, or volunteers all over the country who foster the puppies—socialize them and give them basic training—until they’re over a year old. THen the puppies return to the GDB where they receive additional training to become a guide dog—think of it as their master’s degree.
Owners are matched to dogs by personality, lifestyle, needs, even walking pace. Humans have to be trained on how to work with their guide dogs, too, so potential owners come stay on the GDB campus for two weeks for training. The GDB is set up like a cozy college campus, complete with a cafeteria with customizable menu, individual dorm rooms, a student center/union, a gym, and so on. At the conclusion of the two-week program, there’s even a little graduation ceremony for the dogs, during which they’re officially given over to their new owners. So cute.
I’ve thought a lot about getting a guide dog over the years, and after my visit to the GDB, it has become a more serious consideration. To learn more about the GDB, their mission, programs, opportunities, how to become a puppy raiser, and how you can support, visit the Guide Dogs for the Blind website.
Friday, I was tidying up in my studio and I smashed a vintage candy jar. It slipped right out of my hands. My hands are failing me right now. I am struggling, even typing this. As an artist, I can’t tell you how scary that feels. I had 3 days of IV steroids last week and I feel shattered, just like that candy jar.
Right now, my throat is raw from acid reflux, which I get every time I have steroids. I have doubled up on the medication that’s supposed to protect my stomach, but once again, it’s just not enough. My stomach is raw. I can’t eat or drink without causing pain. I am so thirsty, but drinking just makes things worse. I feel like I have strep throat and it hurts to talk. My vision has been blurry off and on and I’ve had some horrendous headaches.
Yesterday, I took my dog to his annual vet appointment. When we came home I decided to lie down for a nap…I woke up 5 ½ hours later. The whole day just blew by. I was up for a couple hours (long enough to check in with my husband who’d been at work all day) and then crawled back into bed. I lost track of how many hours I slept.
Sometimes the best I can do is survival mode. It’s not by choice and it’s something I am still working on adjusting to. I’m sharing the truth of this moment (without wanting to sugar coat it) so if you’re living with NMO and struggling right now, you’ll know you’re not alone. I’m right there in the trenches with you, fighting for all I’m worth. We may be bruised and battered, but I promise you, we are unbowed.
Tomorrow is the last day to register for NMO Patient Day in Denver. Below is the link to get registered. Hope to see a lot of my NMO family there!
My sister in law, Lisa, recently bought me these very cool grips by Props Athletics. Really meant for weight lifting, yoga or any sport that requires better grip, these fingerless gloves are my new best friend because they also help on days where Neuromyelitis Optica (NMO) has robbed me of any decent dexterity.
Although I fully endorse these gloves that’s not what this entry is about.
This is Lisa, her step daughter Natalie and I last week during Sophie’s 2nd birthday party.
Lisa is a loyal NMO Diaries reader and after my last entry described how the heat causes symptoms like the lack of mug gripping ability, she surprised me with these gloves. She didn’t make a big deal about it, she didn’t look for excessive gratitude for her thoughtfulness and she didn’t tell everyone. She just nonchalantly gave them to me just because. I was seriously stunned by her kindness that I think I was rather cold about them otherwise I’d have been an emotional wreck. I love my sister Lisa more than I think I’ll ever be able to tell her.
I know as an NMO patient it can be easy to point out how those close to us don’t understand what it’s really like to live with the disease. I’m certainly guilty of that behaviour. And truth be told they never will so it’s easy to get frustrated. But then I also know that there are folks that step up to the plate to support us and it’s usually the ones we least expect. That’s why I want to acknowledge Lisa and all those other faces who make an effort to TRY to understand.
I don’t make my family and friends read this blog (I’m bad at self promotion) but Lisa does without me asking. And I’d never expect her to go out of her way to think of something so thoughtful afterwards. I am after all, married to her bratty younger brother (4 years last week) and I would never have imagined I’d be so lucky to also get a kick ass sister out of the deal.
So do me a favour everyone – please thank that selfless person or people in your life that stand by us, fight this disease and continue to support us. Oh and Lisa, I know you’re reading this so thank you.
Last month was my 5-year anniversary of my 1st attack. I have to say I am truly blessed what I have overcome from that one day or actually that whole year. From being paralyzed on my left side and losing my vision in my left eye and going from doctor to doctor trying to figure out why I kept having attack after attack. Now looking back what I have all accomplished is making me realize I really am a strong and determined woman. Of coarse being diagnosed with a chronic illness forever changes your life and it takes awhile to understand why you? Some days are better then others and some days you are just tired of being sick and jumping through hurdles just to get through the day. I do have to remind myself some times I am truly blessed what I have over came.
Eric and I were so thrilled when we found out I was pregnant in 2011 with Allen. It was such an experience going through invitro and having NMO. A lot of people think it couldn’t be done or didn’t know how I would handle it? But I did it! It was the best I felt in years! After having Allen in 2012 was hard for me I was going through the change of being a new mom and my NMO was having fits and I had 3 flares within a few months I also gained a ton of weight due to all the steroids. In 2014 I said I couldn’t live being this heavy so I took charge of my health and started to become healthy again. Now since I lost over 66 pounds I feel so much better.
It is also hard for me to really sit down and think about truly all I went through from the beginning. I think the reason why is I don’t want to relive that awful year of being diagnosed it was so depressing. But sometimes you have to do it. Since that is what makes me the person I am today. I try to look at it from the prospective of now look what I have all accomplished! I still have to tell myself once in awhile NMO doesn’t define me I define what is NMO.
The last 2 weeks on the west coast of Canada have been HOT. For those of us whose NMO symptoms are exacerbated by heat, this time of year can be challenging. One of my biggest challenges in the summer is dealing with dinner. By the time dinner rolls around, it’s super hot in my house (our house faces east and gets full sun all day) and as a result, I am fatigued. The last thing I want to do is cook.
Here are some of the things that help me cope and make sure we’re still eating healthy:
When it’s too hot to cook I will either make an effort to prepare anything that needs to be cooked on the stove or in the oven early in the morning when temperatures tend to be cooler. Later, I can reheat using my microwave. I try to choose foods for the majority of our dinners that can be cooked on the BBQ but another great option is using a crockpot. You can cook an entire meal in a crockpot without heating up the house and loading it up usually takes less than 10 minutes.
Here are some of my go-to crockpot meal ideas:
-A whole chicken & veggies: Add a cup of water or sodium free chicken or vegetable stock to the bottom to prevent sticking and to thicken into gravy at the end. I season the chicken with fresh rosemary, garlic, paprika & black pepper. MMM!
-Chili: This is about 5 minutes of prep time and can be eaten as is or become chili dogs, sloppy Joes or as chili over a baked potato. I use my own basic chili recipe which is crushed tomatoes, black beans, kidney beans, corn, onions, peppers and seasoning. In the summer, I use Yves veggie ground round (a vegetarian option!) as the protein so I don’t have to fry ground beef (or in my case, ground buffalo) on the stove. I add it to the chili about ½ an hour before serving.
-Shredded chicken fajitas: Pour a large jar of salsa into the bottom of your crockpot and then lay boneless chicken breasts on top. Just before dinner, remove the chicken and shred the using 2 forks. Mix shredded chicken with the salsa in the crockpot. Serve rolled in tortillas with sour cream, grated cheddar cheese and guacamole.
*Note: I start these meals at about 8 am and let them cook all day till 5 pm. Check your crockpot manual for cooking times and temperatures.
What would summer be without salads? Years ago, everywhere you went, there were salad bars. Oddly enough, I enjoyed having salad for dinner and so did my husband. I’ve managed to recreate a salad bar at our house. I spend about an hour chopping up our favourite veggies, boiling some eggs & peeling them, grating or cubing cheese, draining & rinsing a tin of garbanzo beans and so on. I usually buy a big box of mixed greens. We like pickled beets, cottage cheese, sliced ham and turkey and croutons as well. I organize everything in individual containers in our fridge. When dinner time rolls around, I put all the fixings out on the counter and we assemble our own salads. An hour’s work pays off in providing enough fixings for 2-3 meals. Prep once, eat twice-that’s a win in my book!
Another way I cope with preparing meals in the summer is to serve dinner on paper plates. It’s just my husband and I, but we don’t have a dishwasher and who wants to stand over a hot sink in 30C temperatures? Not me! I live in a very eco-friendly part of Canada where we’re able to recycle paper plates into our weekly compost, so I don’t feel overly guilty about doing this. Also, my hands are incredibly numb and the heat makes it worse so I tend to break a lot of dishes in the summer. Believe me, paper plates are cheaper & safer!
Some nights, I am just too exhausted to cook and we either get take out or go to a nice air-conditioned restaurant nearby. Sometimes I just have to give myself permission to cut myself some slack. Is it just me or does food prepared by someone else always taste better?
So, I’d be interested in knowing how you cope with the things you find challenging in the summer heat and I bet our readers would to. Leave a comment and let’s beat this heat together!
*Photo: Mexican Chef Salad, a favourite at our house!