An Open Letter to Family and Friends

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. It's so great to be here. As I record this sitting in my apartment it’s March of 2020 and it's about 55 degrees outside here in Michigan. So I know that's not warm to many of you, but for this winter, it just tells us that now we're starting to head into spring and the warm weather is on its way and man that just makes me so happy.

I received another review for the show and I just wanted to read. It is a five star review from the podchaser.com website. And if you ever want to leave a review for the show, if you're inclined, go to podchaser.com. You can find my show The Ankylosing Spondylitis Podcast and then go ahead and leave a review for it. So anyway, this review is from Liquid Soap and it says:

Awesome, simply very humane and informative. I love it.

I'm glad they're happy with the show. Glad you're happy with the show. I'm glad you're listening. And it's great to have you here today.

I want to touch base on something that I read on one of the forums. It's the form called Living with Ankylosing Spondylitis and you can find that on Facebook. This was a posting done by Angela Coplin Robinson back on October 21st of 2019. I finally connected with her and she said it was great to review this. So I've wanted to review this for a while and it really, I think goes to the whole core of everything that we all think of with Ankylosing Spondylitis. I want to just read this because it's so powerful the way she wrote it. I don't think that there's anything really that needs to be changed because it's just, in my opinion, perfect. So I want to read it, and then add my commentary in certain spots, and at the end of it, and I hope this just really resonates with everyone listening because I just think this is perfect. In fact, Angela originally posted this message to her family and friends, and she writes:

Tired of walking on eggshells around certain people. This will be quite a long post, but I want my family and friends to know a few things.

1. I love each and every one of you. I might not go see everyone all the time. But I am battling a disease that sometimes controls everything in my life. When I'm in a flare, I don't venture out and these last few weeks have been hard. Now I'm coming out of one and feeling less defeated.

2. I do everything in my own time. I clean the house, cook and do normal everyday things when I have less pain and more energy. If you walk into my home and see that it's not pristine. I'm probably in a flare. You all know I love a clean home and believe like modded a place for everything and everything in its place.

3. My memory is shit. If I say I will meet you or call you back, you can remind me the day before or morning up. I forget words sometimes and stumble around in my own mind. Please help me remember, I do have a tablet that I write things down on if I remember to look at it

4. When I tell you that I'm in such pain that I wish God would take me, it doesn't mean that I'm suicidal. I love life and I want to live my best life to see my kids, grandkids, nieces, nephews grow up. Just in those days. I can't see past some of this debilitating pain. Not all days are bad, though.

5. I hate saying that I'm hurting all the time. So when you ask me how I'm feeling, I may just lie to not be complaining. I heard every single day, but it's a controlled pain. Only during times of flare, I'm in massive pain.

6. I'm sick of doctors needles, prescriptions, and this disease period. I am trying Remicade infusion therapies on Wednesdays to try and stop the process of ALS or at...