March 15, 2020

An Open Letter to Family and Friends

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 least slow it down. He'll be tired for a few days afterwards. At the least, this is my last ditch effort to help myself. Please don't tell me my decision is wrong. When I tell you understand that I have researched this chemotherapy drug immensely, and it scares the shit out of me. But I've already been taking symposia. So this is it. I understand your concerns. But I need you to understand that I don't want to live in constant pain. If I don't have to. I'm praying this works. 

7.    If I stand up and sit down a lot, and tend to be anxious, it's because I'm having a pain and movement helps me just follow with me and keep talking. lol. I want to talk I need to talk. I'm just a mover lol. And number eight. And finally, if I don't answer your call, please give me a day or two to try to call back. Some day’s exhaustion hits me so hard until I can't seem to muster up the energy to hold a phone conversation. And this goes back to number 3, Memory is Shit. I will say sometimes forget to call you back, or may call you to tell you some, the same thing two or three times. Don't get frustrated with me. Just listen again and act like I never told you. 


In closing, I love you all so much. I need each of you in my life, not only for support, but for my mental well being. I love to laugh with you. As I start new treatments. I'm asking that anyone that I am in contact with take special precautions to let me know if they're sick or anything. My immune system is weakened. And we'll we can more with the new treatment. We can see each other when you're well. Thank you to my family and friends for listening. This isn't a sympathy post. I just thought it was time to let you all know what was going on and how I'm feeling. I love you all. 


After I read that I sat back and thought about it a little bit and I really think that Angela has written one of the best pieces about just overall how you do in your life with AS, it's really interesting. Well, we may all do different treatments and have slightly different variations that really covered a lot of how you can explain to family and friends, really what you're going through. And I think this really gives a great outline as to how that somebody can help to support you. If your memory is bad, make sure that they either have you write it down, put it in your phone, add it to a note tablet that's on the refrigerator, whatever, anything that can help to trigger that memory. I know I've said this before to folks. Just the other day when I went down the stairs, got out to my car, sat down and got ready to go. When I realized the whole reason I was going to run the errand was to mail a package and I'd left the package back in my apartment, which meant I had to shut the car off back into the apartment up the stairs, get it and then repeat the process. Now, for some they may say Oh, it's no big deal. Just remember, I want a cane and I walk with a brace on my foot to keep me from tripping. So it wasn't that it was a big deal to walk. It was the big deal that I had just my memory was for shit and I walked right out the apartment right past what I was going to do. And the whole reason is I just forgot how it doubles if you put your keys down and walk around and look forward. I did that the other day walked around, look for my keys couldn't find couldn't find them. You know why? They were in the pocket of my pants I was wearing. It's just little things like that that you'd go. What I never used to do stuff like that. So there's all these different ways that we survive. 


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That's one thing about people with Ankylosing Spondylitis is we are survivors we overcome. Huge, huge obstacles are put in front of us that a lot of people don't deal with at any given day. And we overcome them. And there's other folks that have issues that are as severe or some cases worse than Ankylosing Spondylitis and I give them kudos for doing that. You know, so anybody that is overcoming any type of chronic illness, chronic pain, chronic fatigue, we're survivors. We know how to interact, how to focus and how to move. You know, she said something about the house is cleaned at her speed, her time and I can certainly understand that. You know, if you walk into my apartment, it's clean, but there is some clutter around and I get to it when I get to it. I spent two hours cleaning my kitchen yesterday. Not because it's dirty, but because I had a lot of stuff on the counter and it just took me a lot of time to move it. Put some stuff away and throw some stuff away. So I got everything cleaned. This morning when I went to get my medication I looked around and said, “Man, it's pretty cool, it's a nice clean kitchen.” Now, had I been able bodied. I'll bet I could have had the whole thing done in 20 minutes. While it took me two hours because I had to stop a couple times. But that just is what it is. We're all very good at overcoming challenges, anything that we consider a life challenge it's put in front of us, we overcome we figure out how to get around it and do it. So as I say that I hope you all can take something away from this. Angela seems like a very nice young lady is very active on the boards you can find her and connect with her and was a pleasure reading that I just, I hope you get some benefit out of my sharing it to you if you missed her original post. So have a great and wonderful day. Again, keep your head up. Go over to spondypodcast.com sign up for the newsletter. If you're looking for, whether it be CBD oil, there's the link there for joy organics or if you need something from Amazon There's the links there for the different items that I posted out any of those pay back. Don't change the price to you but pay back a small commission to me to help keep the show going. I would be so grateful and so appreciative. And I look forward to talking to everybody in the future. Everybody have a wonderful week. Well, see you soon.


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