My Journey

My life as an autoimmune survivor:

2011… the issues started.

2012… the testing started.

2014… first surgery.

2018… first organ failure and second surgery.

2024… second organ failure and third surgery.

2025…. A long long list of confirmed conditions that will forever make me a human lemon! (I’ve told Charlie, if I was a vehicle, he would have already sold me for scrap! Lol)

In the order I received them…. (Many you will have to look up as this isn’t about teaching you conditions…)

•Fibromyalgia (not able to confirm this in anyone and I don’t believe this is what I have due to what testing can prove.)

•Degenerative disk disease

•Scoliosis

•POTS

•EDS

•MCAS

•Lupus

And last but certainly not least…. RRMS. This was sadly confirmed due to all the cysts in my spleen and pancreas that wont stop. Test for one thing and find out another entirely! I haven’t been talking about it because I don’t want pity. I don’t want sympathy. I don’t want or need anything more than better understanding. My 8 year old taught me that at 1am while I was crying in the kitchen.

His exact words “Mom, I don’t like how you have to be so sick and so strong.”

Damn. Right in the feels!

Yes, I don’t look sick. Many of us don’t. I know nearly 40 people that have almost half these themselves. We are the moms and dads on the sidelines. The spouses supporting our loved one.  We are cleaning the house, cooking the meals and pushing on. Fortunate ones are able to work and have some kind of life. Many of us are stuck home because with every single “good day” there are two weeks of horrible days!

This post isn’t about myself alone. It’s about a stuggle every single person with autoimmune issues face.

We spend years going to hundreds of doctors before we get any type of answers. Mainly because if the blood work is okay, it’s all in our heads. 🤦🏼‍♀️ It took me 11 years to finally find a doctor who said… let’s get tests done that don’t involve just your damn blood! And boy was he onto something! However, it’s sad it took 11 years. Many of you reading this will 100% understand. Others with thankfully never know this struggle.

Our bodies are never fully ours. We lose things we loved doing. We cry when we can’t go places because we literally can’t move. We hate when we can’t even work up the energy to eat. We fear when another flare up will come and the damage it will cause to our organs. (In my case.. skin, gums, heart, spleen, pancreas, a kidney and my liver have all been damaged. No, not an everyday drinker. Maybe 3 times a year.) We fear the toll it takes on our loved ones. We fear one day being an even bigger burden to our families than we already are.

Even through all that, we push. We keep going. Sometimes for us but mostly for others. For our partner. For our children. For our grandchildren. (One day🤷🏼‍♀️) For our extended family. For our friends. For those who cheer us on and even more so for those who want to see us fail. We never think about us. Why? It’s to hard to. Plain and simple. When we think about us it’s about all the negative. Talk to someone with autoimmune issues. We complain more about how much we hate needing help than anything! So we focus on the good around us. The people we love.

If you understand becaue you’re an autoimmune survivor, know I’m here for you. If you are trying to understand what it’s like, thank you. If you’re one of those people who doesn’t think someone can look fine and be sick, stop by a local cancer center. Not everyone looks the “part” when facing mortality. Have some compassion. Many of us hide our issues for one of two reasons.

1. We don’t like the pity parties!

2. We hate the snide comments!

We just want understanding when we have to cancel plans. We want understanding when we can’t make it to something. We need understanding when phone calls and texts are left unanswered. We need understanding when the lights are going dim and the darkness is setting in. The one thing people never talk about but need to: the depression the comes with these conditions.

Depression is basically satan’s asshole of a mental condition. Why? Well one moment you’re laying on the couch unable to do anything more than drink some of whatever is near and use the bathroom. Then the next you’re moving the living room around because the sun got in your eyes. Then you proceed to toss everything in another room that just happened to piss you off and reorganize that. That’s where my hatred comes from. (My fellow autoimmuneies will know already!) Those manic days… they cost you two weeks of your life! I didn’t know your body could hurt in some places. Just know… it can!

I actually do not take any medication for it. I’ve tried in the past, yeah that version of me wanted to 😵 people. No lie. 100% planned “offings” and it scared the hell right out of me. So I mange it by driving my husband insane with three hour long talks in bed at night. 🤷🏼‍♀️ It works for me. What can I say. However, I still have my days. Those are the days we just need a 15 minute hug. Those are the days we need the random pop in because you know we aren’t answering the phone. Those are the days we need people the most. Ironic because it’s the days we feel we need people the least. It took me quite some time to figure that out. So I can only hope this helps just one person realize that. ❤️

In closing, now that my ramble that was to be a Facebook post will now be my crazy journey in blogging….

If you are going to be friends with, love, or marry someone with autoimmune conditions, here are the pros and cons per me:

Pros:

•We make amazing listeners. Mainly because your problems get our minds off our problems.

• We are very loyal. Mainly because of our fear of abandonment due to how much of a damn mess we are.

•We love like no other. Again, we don’t want to ever lose it because we know we are basically broken.

•Ride or die! I don’t care if it’s a bad day, my face is swollen on one side and I can’t feel my left leg, you call, I’m coming! If it’s important, I’m on my way!

Cons:

• We never answer the phone on bad days. Text, calls, Facebook, Snapchat… nope. Not happening. Unless the text is something emergent. Then we will respond. We are people pleasers!

• We cancel plans. A LOT! Not because we want to, we physically can’t go.

•We push people away when we need it most but will never admit we need you. We just say the classic “yes, I’m fine”. Really, we aren’t. (Charlie cracked that code way too fast!)

So take the good with the bad or don’t take it at all. While we have our downsides, many more positives come from these conditions. That’s how I have to see it. If I only see the negative, I’ll never enjoy the life I can still live. While it will never be what I planned, it can and will still be amazing.

Until next time….

Amanda