High Five…

All people living with Chronic illness have a diagnosis story. Typically, it is never a smooth journey to a diagnosis, especially when autoimmune issues are involved. Our symptoms often overlap and may take months or even years to get a clear cut answer. My personal journey started at age 14 but I never received an actual diagnosis until 18 years later. Since then, my diagnosis has changed a few times. Some changes were based on a change in symptoms. Other times, my diagnosis changed so I could access medication for “off label” treatment options. In the beginning, I was anti medication. I was positive that I could treat my condition through nutrition and holistic measures. It wasn’t until my pain was so debilitating and I could barely walk that I realized I needed consider a medical treatment option. Once I started on medication, I regained a better quality of life (albeit slowly). I ended up taking medications that caused me to literally lose one day a week due to fatigue and nausea, medication caused anaphylactic response (I thought I was going to die), medications with an arms length list of side effects including possible lymphoma/cancer. I constantly questioned the effectiveness because the side effects are no joke. I questions the effectiveness a lot early on because I was still in pain and had swelling. I couldn’t tell if it was worth it to inject this medication into my body. In 2010, I went off all medication that weakened my immune system so I could do volunteer work in Uganda, Africa. My doctors were not in favor of the trip, but did a lot to ensure I could travel safely. I was DMARDs and biologic drugs for almost 6 months. Pain was horrible, but I was managing as best I could. It ended up being almost 6 months before I could return to my regular medication treatment and suddenly I had an “a ha!” moment. The drugs did work. Yes, I still had pain, but I didn’t feel so horribly sick like I had been without treatment. It was like day and night. My life got better. A lot better. I think the break in treatment was an eye opener for me. My treatment didn’t take away all of my symptoms, but it did help a lot. I’m fairly certain that if I didn’t start taking disease modifying medication, that I wouldn’t still be able to walk or work.

I often have friends ask me for advice when they begin medication. Recently, I’ve had friends ask about thyroid and cholesterol meds. Often their biggest issue is having to take a medication for the rest of their lives. It’s daunting when your body no longer responds the way it should. I always advise others that you have to weigh the benefits against the risks. High cholesterol can lead to heart attack and stroke. To me, taking one pill a day (along with change in diet) would be the way to go. Low thyroid function can lead to weight gain, fatigue, depression, and a myriad of other issues. One pill a day can help to alleviate this symptoms. You can lower cholesterol (sometimes) but can’t get thyroid function back, so I would say it is a no-brainer to take a medication to help. In my case, I choose to inject medication into me that could potentially cause cancer. Why? Living in chronic pain is physically, emotionally, and socially crushing. Do I worry about potential side effects in the future? Yes, but I still focus on the right now. Right now, I can walk. Right now, I still have a decent quality of life. Right now, I feel like the medication is giving me more control over my body.

Why am I writing about this now? Well, I know so many people who are afraid of the COVID-19 vaccination. Over the years vaccinations have been stigmatized. I’ve never thought of myself as pro vaccination, because honestly, I’m not “pro” medication, but I see it as a means to an end. I weigh the effectiveness of medications very carefully because I am always afraid of overmedicating my body and experiencing the resulting side effects. The meds I take are immunosuppressive and fight my disease while lowering my immune system. Even with that, I didn’t want to rush into a “new” vaccine. Then I lost two family members to COVID-19. I lost my dad and am now my mom’s, (who has COPD) main support system. I did my research, spoke with my doctors, teamed up with rheumatologists from Stanford, Harvard, and Washington University for a podcast on the topic, and got myself and my mom vaccinated. I admit, I broke down and bawled like a baby upon getting my first shot because it came two months too late for my dad.

You can’t get on social media these days without seeing pro and anti vax rhetoric. I’ve sadly learned that although many do not want to take responsibility for their fellow citizens. I get it, I guess. They want to make decisions for their own health and not be responsible for others. I also understand, as an immunospressed person, the perspective of hoping people do the right thing to help mitigate the spread of this disease. I saw a post today that said something like, “Do what you feel is right and stop being mean to others”. I think we are a bit passed that point, sadly. This evening, I stopped to pick up dinner. I was walking out of the restaurant with my hands were full and I couldn’t pull my mask off until I got to my car. A woman literally glared at me and snickered, “You don’t need to wear masks outside.” When I turned around to look at her, she was walking into the restaurant and, I KID YOU NOT, her butt cheek was hanging out of her short shorts. You don’t know how badly I wanted to run inside to say, “You don’t need to let your ass cheek hang out in public either”…..but I didn’t. I took the high road….and just blogged about it later….but I digress….

People are craving the need to be in charge of their bodies especially when so much is unknown. People freak out when they have to start taking a daily mediation, so for many, the thought of taking a vaccine is out of their realm of what is right. I think those of us living with chronic conditions can be good resources for people who are quite frankly, living in fear. This virus is an unknown entity that can make some people really sick, while barely impacting others. It can be the same with many chronic illnesses. No two people may have the same experience, but at the end of the day, we know there are treatments than can help us be both proactive to maintain a good quality of life, and reactive to reduce flares that pop up from time to time. I don’t like getting the flu shot, but with my immune system being wonky, I don’t get sick for a few days, I get sick for a month. I didn’t want to get the shingles vaccine, but I had shingles and that sucked a lot! I also had the opportunity to work in Uganda, where many children do not get vaccines. I saw people impacted by polio, whooping cough, and diphtheria. We don’t see that in this country too often and it is horrible to see the impact it has on a child. I also saw tons of kids with autism who never had a vaccine. I choose to be proactive and protect myself.

I’m not a psychic, so I don’t know what may come in twenty years. Maybe I’ll grow a hand out of my butt cheek as a result of taking this vaccine, but after see how my dad and uncle suffered, I’ll gladly high five my doctors with it for recommending a vaccine that protected me. Don’t worry, I’ll probably high five anyone with a butt hand. Time will tell. What I won’t do, is let the hand on my butt cheek hang out of my shorts in a restaurant…again, I digress….

Photo credit: Mohamed Hassan @pixabay

Whatever route you take, I hope you are all safe and healthy.

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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.

One thought on “High Five…

  1. I am so happy I got the vaccine, and so sad it did not work. I had the third vaccine this week, and I am hoping it works. Time to wait and hope. To be continued.

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