Self Care

Autoimmune Warriors, How Are Your 2023 Resolutions Going?

We’re 10 days into the New Year, and I wanted to check in with my fellow Autoimmune Warriors to see how your 2023 resolutions were going.

One of my New Year’s resolutions was to get back into doing yoga. I started doing yoga as a teenager, and then moved into doing more team sports like field hockey or doing other fitness classes like pilates and spinning. But I realized these past few months how much I missed doing yoga. I think it’s great not only as a form of exercise, but to help with stress relief as well. The problem is, I moved to a new neighborhood and wasn’t familiar with the local studios in my new hood.

The great thing about the New Year, is that if you have fitness and health related goals, that there are plenty of gyms, fitness centers, and health products doing promotions around this time to get your business. I ended up finding a local yoga studio on the MindBody app that was doing a promotion for only $10 for your first class.

It’s been ages since I went to a yoga class, and although there are similarities between yoga and pilates, which I had more experience with, it’s still not the same! Doing the class made me realize how important flexibility is in yoga; at one point, we were doing a stretch where everyone ended up in the splits…except me. But I was surprised by how flexible I was given that I hadn’t been to a yoga class in ages.

Other than getting back into yoga, another resolution of mine is to be more proactive about my health. In the busyness of life, it can be easy to slip with your healthcare routine. As an Autoimmune Warrior, you probably spend a lot more time than the average person when it comes to going to doctor’s appointments, ordering and picking up prescriptions, sorting and taking your medications, getting lab work done, preparing healthy meals, and more. It’s basically like having a part-time job, on top of all of the other work that you have to do!

In my case, this means making sure I make those appointments with my various specialists, ensure that I’m getting my lab work done on a quarterly basis, making any follow-up appointments if any abnormalities arise in my labwork, and ensuring that I’m always fully stocked on my meds. It also means ensuring that I get a good night’s sleep (at least 7 hours) and do daily exercise. I’m also putting more effort into making healthier meals, and using more fresh produce from our home garden.

The interesting thing about having an autoimmune disorder is that it’s chronic in nature, meaning that autoimmune symptoms are continuous and never-ending. So it’s not like a weight loss goal, where I can say, “I want to lose 20 pounds” and then I’ve achieved the goal once I’ve lost that amount of weight. In other words, there isn’t an exact ‘outcome’ that we can really strive towards or predict. This makes measuring your goal progress a little trickier.

However, I remind myself that it’s not always about achieving a specific outcome (i.e. lose 20 lbs) but more so about adopting an overall healthier lifestyle. Do you notice that the people with the greatest longevity in the world, who live in the so-called Blue Zones, don’t ever count calories or even own a scale? It’s their daily habits that contribute to their overall healthy lifestyle.

So cheers to 2023, and I hope that your New Year’s resolutions are going well so far and continue to progress as the year goes by. Let me know your goals (health-related or otherwise) in the comments below!

How Chronic Illness Can Kill Your Self-Esteem

October 27, 2019October 27, 2019Isabel3 Comments

I recently read a post on Reddit on the r/autoimmunity subreddit titled ‘Losing Everything‘. In the post, the author describes being diagnosed with Sjogren’s Syndrome, an autoimmune condition affecting one’s moisture-producing glands. The author has also been living with other autoimmune diseases, including Graves’ disease, Hashimoto’s Thyroiditis and Granulomatosis with Polyangiitis (GPA), for quite some time.

She goes on to say that since being diagnosed with these conditions, she feels like she is losing everything that makes her ‘herself’. For example, she is an artist, but she has lost the use of her dominant hand as a result of her conditions, leading her to quit her art. She also had a unique style, with beautiful thick hair and piercings. However, most of her hair has now fallen out and she had to remove her piercings due to constant infections.

The author’s post made me think of my own struggle with chronic illness and how having Sjogren’s Syndrome, Hidradenitis Suppurativa (HS) and Benign Fasciculation Syndrome (BFS) has impacted my sense of self.

Although I have both good days and bad days, I often resent my body and these diseases for what they have ‘taken away’ from my life. I often think to myself, what would I have accomplished by now had it not been for this disease? Would I be further along in my career? My education? Would I have more social connections and deeper friendships? It’s hard to quantify, but I feel like my life would have been very different had I not developed autoimmune issues. In other words, I don’t feel like I can be my true ambitious self because of my chronic illnesses.

I could also relate to the author’s mention of her outward appearance, like her hair and piercings. I notice that I often think ‘why bother?’ when it comes to things like fashion and beauty, which were important to me before my diagnosis. I think this is because I’ve adopted the mindset that I am ‘diseased’, so why bother to look nice? This is definitely a negative mindset that I’m continuing to work on, but, I think it’s important to acknowledge how chronic illness can impact your sense of self- whether it’s your own self-image, or even your outward appearance.

I also recently read a powerful testimony on The Mighty by Megan Klenke titled, ‘How Chronic Illness Can Drastically Affect Your Self-Esteem’. In her post, she describes the shame that many individuals with chronic conditions and disabilities face, such as having to ask for help to do tasks that they once did independently, using a wheelchair, or dealing with embarrassing side effects of medications. Furthermore, Megan also points out that simple things like missing family functions or get-togethers with friends as a result of illness can make one feel left out and like an ‘awful’ family member or friend.

A YouTuber I follow named Samantha Wayne also created a video detailing her struggle with the impact of lupus on her self-image. She ended up being hospitalized and had to take time off to rest. During this time, she says she felt useless and like she wasn’t doing enough. Also, she had to step back from her job because being on her feet all day was taking a toll on her health. The medications she was taking, such as prednisone, also impacted her outward appearance.

Samantha did say that leaning on her support system has helped her to get through negative feelings about her self-worth. She also says that realizing that everyone is worthy, regardless of their health status, has also helped. Furthermore, she says that while her disease caused her to lose certain hobbies, like competitive basketball, she was able to adopt new hobbies and learn new skills such as video blogging on her YouTube channel, which she started in order to raise awareness about lupus. Finally, she says that practicing gratitude for the things she can do and what she has is another way that has helped to overcome her low self-esteem.

Has having a chronic illness impacted your self-confidence, and if so, how have you handled it? Let us know in the comments below!

Type 1 Diabetes Patients Drive to Canada for Affordable Insulin; Executive Gets Purple Mohawk to Benefit Kid with Autoimmune Disease

May 15, 2019January 19, 2020Isabel1 Comment

Type 1 Diabetes Patients Drive to Canada for Affordable Insulin

Lija Greenseid of Minnesota holds up insulin for her 13-year-old daughter that she purchased from Fort Francis, Ontario during an organized caravan ride to Canada.

Type 1 Diabetes is an autoimmune disease in which the body’s immune system attacks and destroys pancreatic cells, rendering them incapable of producing insulin. Insulin is a hormone that the body needs to get glucose from the bloodstream into its cells. As a result, patients with Type 1 Diabetes rely on prescription insulin in order to survive.

Unfortunately, for the majority of Americans, the cost of life-saving insulin keeps going up year after year. As a result, Quinn Nystrom, from Minnesota, organized a caravan to Canada to fill her prescription for insulin, where it sells for a fraction of the cost.

As reported by the Canadian Broadcasting Corporation (CBC), insulin costs significantly less in Canada, thanks to the Patented Medicine Prices Review Board, which sets limits for the maximum price that can be charged for patented drugs. As a result, a vial of insulin that costs $300 in the US is only $30 in Canada, even when it comes from the same brand.

Many patients who cannot afford their medication will ration their insulin. Unfortunately, as a result of not taking the required minimum dose, patients who ‘ration’ their insulin can die.

That’s what happened to Alec Smith-Holt, a 26-year-old man from Minnesota who died in 2017 when he couldn’t afford $1,300 in insulin, and decided to ration his remaining supply. His body was discovered five days later. His mother, Nicole Smith-Holt, joined the caravan to Canada as a symbolic gesture in memory of her son.

To read more about this story, click here.

Executive Gets Purple Mohawk to Benefit Kid with Autoimmune Disease

Cayden Krueger, a young patient with ITP, poses with John Stevenson, who is supporting his Pump it Up for Platelets campaign.

Cayden Krueger, from Madison, Wisconsin, was diagnosed with thrombocytopenia purpura (ITP) when he was just 6 years old. ITP is an autoimmune disease that causes patients to have too few platelets in their blood, resulting in easy bruising and bleeding. Cayden has been raising awareness about ITP by launching a Pump it Up for Platelets fundraiser and sporting a purple mohawk.

When John Stevenson, a Senior Director of Financial Services at US Cellular, heard about Cayden’s story, he challenged his employees to raise money for the Pump it Up for Platelets fundraiser, and pledged to get a purple mohawk himself if they could meet a $1,000 goal. His team ended up raising $2,000, so Stevenson found himself with a new hairdo, and Cayden even got to make the first cut.

To read more about this story, click here.

Autoimmune Warrior

Sharing the stories of those affected by Autoimmune disease