Finding a New ‘Normal’

Finding a New 'Normal'

Lynn, PicnicHealth

Jan 27, 2022 • 5 min read

Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Into her late 60s, Lynn was enjoying retirement, running half-marathons, working out, traveling — all while planning a wedding and selling her house. When she was hit by muscle weakness, seemingly out of nowhere, she felt devastated and confused. After a number of misdiagnoses, Lynn was eventually diagnosed with dermatomyositis, a chronic rare muscle disease characterized by inflammation, muscle weakness and skin rashes. She then experienced some of the ups and downs inherent to the disease, but ultimately stabilized — and joined Myositis Support and Understanding Association (MSU) to support others in the community.

I was a runner, and I was training for the next half-marathon I was going to run. I also took some boxing lessons, some weight lifting, Zumba, Pilates. I wouldn’t say I was a gym rat, but I did a lot of exercise. At some point I noticed I was having trouble getting off the floor after a cooldown session. I thought, "Well, wow, this is strange." In my training runs, I felt exhausted.

At the same time, I was planning on getting married for the second time at the age of 69 — we had planned a wedding for September 2015. I was also busy trying to sell my house because I was going to move in with my new husband. As I was staging the house, cleaning up and throwing things out, I would get to the point where I would say "I'm exhausted," and I never characterized being tired that way. But I just had to stop and rest.

Then, I started getting a rash that didn't make sense. It was on strange places all over my body, which turned out to be a classical presentation of a dermatomyositis rash, but I didn’t know that at first. I went through about three months of getting tested and being misdiagnosed with everything from dermatitis to autoimmune hepatitis. The week I was closing on my house, I got a call from my primary-care provider, and they said, "You need to go to the emergency room immediately." Tests showed I might have rhabdomyolysis, which is a serious condition caused by muscle trauma and can lead to kidney failure. I was in the hospital for a week being treated, and after even more testing, they suspected I had dermatomyositis.

A week after I got out of the hospital I went in to see a rheumatologist. He tested my muscle strength and looked at my rash and he says, "Congratulations, you're one in a million. You have dermatomyositis." Well, I didn't have a clue as to what that was — I couldn’t even pronounce it! He told me it was chronic and talked about the testing he needed to do and how he would treat it and sent me home with literature. It wasn't until later that I knew my life had changed. I had a rare disease with no cure and few treatment options. There were no guarantees of what the future held. Since leaving the hospital, my muscles had severely weakened, I couldn’t raise my hands above my head or get up easily from a chair. It felt like my muscles had turned to jelly.

All of a sudden, it was like the rug was pulled out from underneath me. Was this the way my life was going to be from now on, living with the uncertainty of whether or not my life would ever be “normal” again?

But I tried not to panic. I tried to take it a day at a time, and listen to what my doctor said and follow the treatment plan. In July of that year, I had a cruise planned with my daughter. I told my doctor, "I'm not going to miss this cruise, even though I couldn’t walk safely without a walker. Is that okay?" And he said, "Sure, as long as you take your medicine and don’t overdo it." So I packed my four-inch toilet riser and off I went, determined not to be afraid of traveling in my weakened condition. And I learned a lot about myself and my ability to adapt.

By the time I got married, I was stabilized, getting stronger every day and thinking the worst was behind me. But then I flared again, and this time an infection caused damage to my kidneys. I was in the hospital for a week — I could barely raise my head off of the pillow, I couldn’t stand up without help, I couldn’t eat. I lost muscle mass. I got a blood clot in my leg and was put on blood thinners. I had to go through physical therapy for seven months to get back to the point of being able to walk. This was my lowest point. I began to think this was what my life would be.

Gradually, I started getting better again. One of the issues that people with my disease have is that they cycle up and down, and sometimes you can never get back to the way it was, and you just never know when it's going to hit again. You never know if the medicine is going to work or not, or how much your body can keep fighting or if you can keep a positive attitude. But I stabilized, and I started getting better to the point where I am now in total remission.

I'm not taking any medication, which is very rare. But I live knowing that my disease could flare at any time and that the next time could be worse.

I think one of the things that people don't understand with our disease, myositis, is that it is life-changing, and you never know what your normal is going to be. We all seek that normal, and there's always a new normal that comes along. It is sometimes invisible. You will hear this from many rare disease patients: "I look ‘normal’ on the outside, but on the inside, I'm not."

When I got better, I decided that I would give back, and the way I gave back was to join Myositis Support and Understanding Association (MSU) as a volunteer. I ran some of the support groups for a while, and then I decided that I would offer my services because I do have a science background and business experience. I’m now the Vice President, and I head up our patient-centered research effort. Joining MSU was a way for me to give back to the organization that had helped me through the dark days. In a way, I’ve found a new normal that has enriched my life. It gives me purpose to advocate for all who have been affected by this terrible disease.

MSU has partnered with AllStripes on their dermatomyositis and inclusion body myositis programs because we think they are on the leading edge of research and their programs give voice to the needs of the patient. Patients can see the impact of their participation and how they can move research forward.

We know that every person's story is unique and deserves to be heard.

Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

1. Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.

2. Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.

3. Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.

4. Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.