It’s been a month or so since I’ve done a blog post on chronic illness. I want you to know some things before you start reading.

1. I know we are all entitled to our own thoughts & feelings. Please also respect that I’m sharing something from my perspective being someone who has a weakened immune system

2. I know there are some people who physically can’t wear a mask or have other medical conditions. I know they are communicating with their doctor about keeping them safe.

3. This isn’t medical advice or tips. I’m not a doctor. I’m just sharing my feelings as being someone with chronic illnesses.

Ok – thank you so much for reading through that and respecting this blog post and me and respecting those with weakened immune systems.

My guess is you already kind of know where I stand on this. Yes, I wish more people would wear masks. It would help flatten the curve so we can get back to “normalish” sooner. I wish we had enough love and care for another. We are given the choice to literally help other peoples lives and some are choosing not too.

I’m referring to wearing a mask out in public at stores and restaurants, etc. We’ve talked to neighbors and friends and socially distanced. We’ve talked to family also. When we do these things we know everyone is taking precautions and we are all being smart and safe.

I’m not saying you can’t see anyone. In our county our cases keep rising. I’m on steroids right now so my immune system is even weaker. I’ve not gone into stores for most of the quarantine. There was one day here and there when the cases were improving, that I did, but I wore a mask. Sometimes you need to get out of the house for sanity. Lately we’ve been taking car rides here and there so I can still get out.

I’ve not gone into a store for awhile. People were getting closer to me than usual in my wheelchair. I sometimes felt like a target like, oh this person obviously has some health issues. We need to respect space. I began getting so much anxiety at the store that I’ve stayed home. There are arrows and rules to follow in the store. People don’t follow those and they get really close to you, and I wasn’t having it anymore. I haven’t eaten in a restaurant – we’ve done takeout which often includes contactless curbside pickup. We’ve gotten delivery.

You may be thinking why do I feel strongly about the importance of wearing a mask if I’m at home? Let’s just think about this situation. We are all getting groceries and getting mail and eating food that was cooked in a restaurant. Those alone can carry so many germs. If we start wearing masks COVID-19 wouldn’t be spreading rapidly. It wouldn’t get on these surfaces as easily and it would stop spreading so rapidly.

My Mom was talking to me one day last week and she shared with me something she was thinking of, and I really agreed with what she said. She was saying I don’t know why it’s so bad to wear a mask and why it turned political. She said should doctors and nurses stop wearing masks during surgeries and procedures. My guess is you want the doctors to wear masks and I’m talking PRE COVID you wanted them to wear masks if you were getting a surgery.

As we were talking I had started to reflect on all the surgeries and procedures I’ve had, and how uncomfortable I would’ve been if there wasn’t a mask on the doctors and nurses. Recently, in 2016, when I was in the hospital with facial cellulitis the doctors came in with masks as well as the nurses and the phlebotomists. They were wearing masks because I was very sick and my immune system was so bad. They didn’t want to risk getting me sick by spreading germs. So picture it now – why are we getting so mad over being asked to wear a mask? Masks have been protecting so many people before COVID-19 even hit.

If you went to the doctor during cold and flu season and you were exhibiting symptoms or cough, they made you wear a mask. Did you refuse it then? No, you probably wore it to protect yourself and others in the room. It breaks my heart how political this has gotten. This is about caring for another human.

I’m not sure why this huge shift happened and that some believe this COVID-19 is all a hoax. While I never had a test – it was highly suspected that I had COVID at the end of March and into April. I was the sickest I’ve ever been and it was 3 weeks of horrible pain. I was then thrown into the worst flare-up of my life. I don’t want anyone to experience feeling like this. I know there are asymptomatic people, or they get symptoms but not severe which I’m grateful for them. I never want to get COVID-19 again. I did have the antibody test done toward the middle of May, but in recent studies they are thinking the antibodies are only lasting a few weeks. This test was taken about 2 months later.

Before COVID-19 I was always careful when sicknesses were going around. Now I’m even more aware. My doctor has talked with me about the safety measures I’ve needed to take. I know masks aren’t fun to wear but they do help stop the spread. Just remember I’ve been here for 25 years and this is the only time in my life I’ve been through a pandemic and the only time I’ve had to wear a mask this strictly/often as I’m sure this is true for almost everyone. In 5 years (hopefully) we won’t need masks to go places. This isn’t going to last a lifetime of wearing masks all the time, so we can get through this together!

I want to make another point. As many of you know cancer patients have to be careful all the time especially when going through chemo. They wear masks and people visiting sometimes have to wear a mask. We take those precautions and follow them. I don’t understand why wearing a mask to help people now during COVID with weakened immune systems or those going through cancer or the public in general is so horrible. It’s a piece of fabric that can help so much.

I love helping people. If I can help 1 person not get COVID by wearing my mask that is huge.

I wear a mask for myself, my Mom, and my sister. I also wear my mask for family members.

Who do you wear a mask for?

Also I just want to repeat I understand those who medically can’t wear a mask. I hope the general public will wear masks to keep you safe and to keep those with illnesses safe.

Thank you for listening to my perspective.

Now I’ll just give a little bit of an update on my health. At the end of April and into May I was experiencing the worst flare-up I’ve had. My temperature spiked to 103-104 and would come down to 102 on Tylenol. I did a few blood tests to make sure nothing else was going on and nothing else was – which confirmed this is a flare-up. I did 2 weeks of high dose steroids it was kind of like the 6 day tapering pack but this was happening over 2 weeks so it was more steroids. They helped and my pain was diminishing a little bit and my temperature was normal 98 NORMAL! It’s amazing what steroids can do for someone who is likely experiencing an auto-immune flare up we just don’t have the official diagnosis. Anyways after about 3 weeks off of those I started to sleep a lot and felt awful – like stay in bed all day. My temp was back up to 104. So my doctor wanted to try a new approach. Since I’ve been responding well to steroids this year he wanted me to try 5 mg of Prednisone every other day for a month, and then I will meet with him to discuss the next steps moving forward. Since we know once the steroids are out of my system I will just go into another flare-up. So anyways I’m about halfway done I think. I can tell when it’s a steroid day and when it’s not. My stomach has been kind of a mess we are still doing trial and error with what foods are setting me off. My allergist gave me a list to watch. I’m allergic to Latex and there are some products and foods that mimic the latex allergic reaction. I also learned I’m allergic to adhesive. So anyways the steroids increase your appetite and my appetite was pretty poor due to stomach pain. It’s been really hard because I’m hungry but my stomach isn’t used to this much food so that’s been painful. I also feel so bloated and have gained weight due to the steroids. My temperature is pretty much normal but if I have a more active day it flares up. So I will do another update or blog post once I meet with my doctor.

“This is my commandment, that you love one another as I have loved you.” – John 15:12

xoxo,

Abby