The fear of the unknown…

Life is scary for all of us right now. None of us have experience with this, so I’ve been following the recommendations of WHO (World Health Organization), the CDC (Centers of Disease Control), and the ACR (American College of Rheumatology). I did reach out to my personal rheumatologist and her advice was to get blood work done to see my levels. I asked if I should stop taking my biologic drug and her response was that it is ultimately up to me. It’s controlling my pain and swelling beautifully and giving me a quality of life I haven’t had in almost 17 years. She, like other rheumatologists that I follow on social media admit, no one knows what will happen because COVID-19 is novel. Are we extra susceptible because we take immunosupressive drugs? Maybe? Probably? Maybe not? It’s all a big question mark at this point. My doctor said, “If you think you can manage the pain again, you can go off.” That is what it is going to boil down to at this point. There have been reports that patients in China are being given ACTEMRA to treat lung issues (click here to read more.) It is a drug that I used before. Does that mean it can help me? Again, who knows. What I do know, is that I will stock up on my meds and hold tight.

I decided to hold off on going to the store. I went today and am now stocked for myself, Georgia and my cats. Georgia has been quite ill, so I’ve been focused on getting her healthy. I’m now on a two-week “vacation” because I work in schools in Pennsylvania. So I get to stay in with her and help her heal. I’m also relieved that I can “socially distance” by not going to work. It’s a huge relief. In saying that, I worked in a county that was the first to be “quarantined” due to high number of COVID-19 diagnoses. The next day, the county I live in was also quarantined. I don’t think any of us know if we have been exposed or not. Time will tell.

The news is a scary thing. I agree the mass media is hyping this BUT again, this is an unprecedented event in our world. I did get swine flu back in 2010, but I don’t recall being this scared. Of course I want to scream each time I hear, “Only the sick and elderly are at risk” because #1, there are more and more young healthy people being diagnosed, and #2, I’m one of the high risk people. I think my friend MarlaJan from LuckFupus said it best

I am going to recommend that people stick to reputable sources for info on the pandemic. Social distancing gives people a lot of extra time to find sources to either ease their fears, or rev them up. The non-profit I cofounded, IFAA and our initiative AiArthritis Voices 360 will be doing podcasts to continue to provide the global autoimmune arthritis/rheum community with information. Please stay tuned, as I will announce those as they occur. Click here to read more.

Until then, if you are looking for quality, factual, and scientific information, check out these following sites:

CreakyJoints. My dear friends at CreakyJoints have done an amazing job at putting together good information, patient voices, and doctor recommendations. Thank you! Click here to go to CreakyJoints site.

Charis Hill is a writer, advocate, and public speaker. She has been one of the top patient advocates being interviewed right now. She is a wealth of information. Her website is Being Charis, but I recommend you follow her on facebook, too. Being Charis (facebook)

IFAA/Aiarthritis: The non-profit I cofounded will be teaming up with CreakyJointsCharis Hill: Writer, Speaker, Advocate – BeingCharis, Dr. Kim from Washington University Rheumatology Division to put together a COVID-19 AiArthritis Voices 360 panel. We will use our podcast platform as a “conferencing station”, open for you to listen to our conversations and then inviting you to join in on the discussions. Stay tuned for more info.

I am going to admit, I am struggling with this situation. I’m scared for myself and my family. I am losing work with clients who pay per diem for services, so bills will pile up. I have so many fears that I don’t know how to move forward. I found myself sleeping a lot. Last night, I decided I needed to take steps to protect my mental health as well as my physical health. Here are some of my plans:

-Read or listen to books. I’m going to focus on light, airy, and fun reads. Nothing too heavy or mind numbing.

-Binge watch TV. (I’m rewatching Season 1 of Outlander because….Jamie is a hottie. Enough said).

-Spring clean, I may need a forklift, but I’m determined.

-Do laundry and clear out clothes that I don’t wear.

-Go for walks, both with the dog and without. The weather is clear right now. I’m going to take advantage of it.

-Chat with friends and family via social media, text, and phone calls

-Limit my time watching the news. It’s scary. I will do daily check ins, especially for my state and county, but I will not be clicking on links from friends on facebook or twitter.

-Finally, I’m going to give myself this weekend to rest and regroup. I have two weeks to deal with my list. Monday is a good day to start.

As I read my list, I realize some of the physical stuff may be a bit lofty for my arthritis joints. Staying on my meds might be a good idea. I’ll wait for my blood work to be returned to make a final decision.

Wish me luck that I can also get my #spooniedog, Georgia Grace back to good health, too. She has been battling a UTI and the first round of antibiotics did not work. She is now on Clavamox and it is causing her to be listless, refuse food, and lose weight. She is a diabetic, so getting food into her is so important. I spoke with her vet today and we have a new plan moving forward. Lucky for me, I can be here with her to watch. As my dear girl ages, I know our time is limited. I don’t want her time to be spent feeling ill. Hoping to have her smiling again soon.

Obligatory Georgia Grace photo.

Be well my friends! We will get through this. Wash your hands. Socially distance yourself and keep on keeping on!

Author unknown….but so true, so true…

Posted by

Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

3 thoughts on “The fear of the unknown…

  1. As somebody that was forcibly moved from a biologic that was doing wonders to one that didn’t, my untrained advice would be to resist the urge to stop any medication if you can, especially if it’s working. My break from Humira means I am now faced with the prospect of having built up a resistance to it in the time it was withdrawn which means not is potentially that off the table for life, but the whole family of biologics drugs. Our immune systems are little warriors, give them a chance to build up a defence to a drug and they will. Stay safe 🖤

    Liked by 1 person

    1. I’m on my 9th biologic, so I know how hard it is when you go off. I’m on a drug that works wonders, but I’ve had 4 bouts of bronchitis, 1 bout of pneumonia, and multiple sinus infections since starting this drug. I definitely get more ill on this med and stay sick for much longer than normal. That said, I’m staying on it. We don’t know if this virus can be made worse by biologic drugs. I’m trying to be very cautious and thoughtful. Be safe my friend!

      Oh and I gave up Humira to volunteer in Uganda years ago. Went off for 6 months and could never get back on b/c I always got shingles….and ended up with swine flu.

      Liked by 1 person

      1. Sorry to hear that but glad you found something that works for you now. I get ill an awful lot on biologics but it keeps me out of a wheelchair so I try to remember the benefits when I’m fed up with always being ill. I got swine flu in 2009 too.

        Please look after yourself and keep us posted.

        Liked by 1 person

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