Kay Olberding

@kayolberding1
I have had this condition for almost 6 yrs but was not diagnosed until 9 mos. ago.
Community Voices

Fog

#BrainFog
When I read about aphasia, it sounded somewhat like my brain fog. I understand what people are saying but if I am tired I can’t come up with a response. It’s frustrating.

ADS
ADS @adsilva
contributor

How Telehealth Is Improving Healthcare for Rare Diseases

The COVID-19 pandemic brought to surface many health-related disparities for underserved populations, including patients and families living with a rare disease. Earlier this year, the National Organization for Rare Disorders (NORD) published a COVID-19 Community Survey Report, detailing the multiple struggles for families and patients: almost 30 percent of respondents lost their jobs due to COVID-19, and close to 20 percent of the respondents were unable to access medications due to shortages or access issues with insurance. It is an understatement to say that COVID-19 increased the already stressful lives of those impacted by rare disease. However, the community is well-known for its resiliency, and many have also experienced some ease in managing their care, including accessing health-related appointments through telehealth. To understand more about the overall transition to telehealth, The Mighty teamed up with NORD,  a non-profit organization supporting individuals and families facing rare conditions through education, patient advocacy and research, and asked our communities, “What’s one unexpected way telehealth has improved your care or your child’s care during COVID-19?” Here’s what they had to say: “Some days, I am in too much pain to get out of bed, and any physical effort is exhausting. For regular follow-ups, telehealth is great, because I can talk to my doctor from home, and I don’t have to keep cancelling appointments when I’m physically unable to get there. I’m also in an at-risk group, so using telehealth also means I’m not exposed unnecessarily to COVID-19.” – Brandi B. “Before COVID-19, I wasn’t able to see my therapist. Now I get to do telehealth visits with her regularly and improve my mental health.” – Danielle P. “Many of my child’s specialists are at a children’s hospital three hours away from home. At a minimum, we have to travel there every two to three months for two nights to see multiple doctors and get quarterly prescriptions. COVID-19 made travel and overnight stays impossible. The doctors were able to handle visits via telehealth, and finally used electronic prescribing to send his highly controlled medications to our local pharmacy. This will be allowed long-term, even after COVID-19. We will only have to travel to the children’s hospital for in-person visits one to two times a year — unless something changes– while keeping up with our much more frequent telehealth visits. This is a major change for us. My son doesn’t handle the travel well, nor the sleeping in hotels. And it’s cheaper for medical insurance too, since they have to pay for the travel expenses and hotel and meals.” – Lila G. “It has been wonderful. I have myasthenia gravis, and some days just trying to feed myself and my husband, who had his foot reconstructed and is non-weight bearing, is a challenge. So, being able to see and speak to one of my doctors or my husband’s doctors is a life-saver for me. Now, I don’t have to drag myself out in the high heat and humidity, drive to my doctor’s office, sit in the waiting room while wearing a mask, then sit in another room just so my doctor can renew my blood pressure medication. Video appointments save my energy, not that I have much of it.” – Chrissy T. “On days I don’t feel well, I don’t have to reschedule because I can do the appointment in my pajamas on my bed.” – Kimberly B. “I no longer having to travel three hours to see a specialist.” – Chloe E. “I have found it easier to access care. I didn’t have to worry about the process of leaving the house for an appointment unless I’m extremely unwell.” – Jessi H. “My doctor has been much kinder and calmer over the phone. He’s not ranting about his job or threatening to take away my pain medication, so my stress level has gone down.” – Elsie G. “I felt that I had more time to ask questions, and I was more comfortable doing so because I wasn’t as anxious without the doctor watching me. It also has made my appointments more accessible; instead of spending more than two hours driving each way to get to my appointment, I can do it from my own home within risking exposure to COVID-19 or any other illnesses.” – Kathryne Z. “I have mitochondrial disease and many other rare diseases, and I’m able to avoid many germs, including COVID-19, because I don’t have to visit multiple hospitals.” – Kristina K. “Before COVID19, I wasn’t able to see my therapist. Now I get to do telehealth visits with her regularly and improve my mental health.” – Danielle P. “I still have to go into my doctor’s office to get injections, but it’s been much easier to get the care I need with telehealth. I don’t drive right now and I go to therapy an hour away. Now I get to see my therapist regularly without worrying about how I’m going to get down there. When it’s safe for me to go back to work, I’ll be able to get therapy from my classroom (I’m a teacher) without leaving school early. It forced me to use it when I didn’t realize it was so available for me. It makes my life easier!” – Liz T. What’s one unexpected way telehealth has improved your care during COVID-19? Let us know in the comments below.

Samantha Bowick

How to Set Boundaries When You're Sick: What to Know

Setting boundaries can be extremely difficult, especially when living with chronic illness. Being sick doesn’t mean we don’t want to be included in plans with our family and friends. It means that when asked to do something, we may have to turn it down because we’re in so much pain or experiencing other symptoms related to our pain. With chronic illness, you never know when symptoms are going to pop up or worsen, which isn’t our fault. But we still feel guilty if we have to cancel plans or unable to do something. Remember, it’s OK to say no. If you say yes to something and then feel miserable later wishing you hadn’t said yes, you are only hurting yourself. Nobody knows how you feel, so it’s important to speak up for yourself. Boundaries are healthy and necessary for your physical, mental and emotional well-being. One person can’t say yes to everything in life. We have to decide for ourselves, “No, I don’t want this in my life.” An example: you get asked to go hiking, but don’t feel up to or like the idea of hiking. This is a boundary. You’re not going hiking. So you say something like, “No, I don’t want to go hiking or feel up to it, but thank you so much for asking.” Some things we have to do no matter what, like eat, sleep etc. We don’t have a choice in that, but we do have a choice with how we spend our time and with whom. It’s OK to help your friends and family. It’s not OK to let them walk all over you. One boundary I’ve set is scheduling time for myself, usually watching Netflix. I usually go to my room around 9 p.m. and if I don’t go to sleep then, I’m in my room watching Netflix or listening to music by myself. I do a lot during the day to help me and my family so scheduling “me time” has helped me relax and decrease my stress, which is a boundary. Another boundary I’ve set for myself (probably because of my health) is not agreeing to plans until the day before to see how I feel. I say something like “I would love to do that! Is it OK if I let you know the day before if I feel up to it?” That way I’m not committing to something and don’t have to back out of plans if I don’t feel up to it. I can talk with the person the day before or the day of if there’s enough time and say something like, “I’m so sorry I don’t feel up to it. Can we try another day?” It’s also important to set boundaries for you and people who may be stressful, toxic, or draining. You only get one life and have to make yourself a priority. Once you’ve set a boundary, you have to enforce it. For example, if I don’t go to my room at 9 p.m. to relax, I might not get time to myself that day and might suffer physically, mentally or emotionally because of it. That only hurts me. If you say you don’t want to go hiking and someone tries talking you into it, you have the choice to either stand by your boundary or cave and go hiking. If you want to learn more, I highly recommend these three books: “Boundaries,” “Beyond Boundaries,” and “Safe People.” I have struggled with boundaries my entire life, so my counselor recommended I read Boundaries. It helped me tremendously with how to effectively set boundaries and I hope it helps you, too. When setting boundaries, it’s important that you don’t beat yourself up if you can’t agree to plans. At the beginning you may feel guilty, but stick with it, as it will get easier with time. Have you had to set boundaries because of your illness? What does that look like for you? Let us know in the comments below.