infusion

The “ Trolley Problem “ has been on my mind all day today …

It’s probably because , As I should have predicted yesterday’s infusion of 4mg of IV Copper ( instead of my usual 2mgs ) to treat my dangerously low copper levels that just won’t seem to rise .

Has not been my friend 🤢.

I’m one who hates to be still . But Ive spent all day in my bed sleeping or watching tv .

As I’ve been nauseous , felt like my throat and entire body has been attacked by sand gnats , I’ve had body aches beyond control , and exhaustion belief .

My nerdy little brain has been thinking over and over abb“ The Trolley problem “

If you don’t know what that is Wikipedia states that

“ The trolley problem is a series of thought experiments in ethicsand psychology, involving stylized ethical dilemmas of whether to sacrifice one person to save a larger number.”

I thought of how relates with some of the treatments I’ve had

With the big car being my future . Then current me would be tied to the tracks , completely and utterly being held against my will .

When I first started oral chemo ( for my connective tissue disease ). , my hair started falling out and my head rarely left the inside of a toilet .

My IVIG I need to stay alive due to my CVID has tried to kill me multiple times , and still tries to ,
( It causes anaphylactic reactions thanks to my Mast Cell Activation Syndrome )

And the reaction I’m having to copper on this higher dose is everything an IVIG reaction minus the part where my throat closes off ( thank goodness )

Often it feels like I’ve had to a sacrifice what I want my life to be , So that big train can drive through

Sometimes we have to sacrifice the comfort and convenience we CRAVE now ( often leaving us feeling like we got hit by a train )
So big beautiful things can “arrive “ to our future

And in my case , so I can have a future at all .

So here is to suffering , that leads us to a big beautiful someday

Keep going ❤️

#RareDisease #copperdeficency #Infusion #MastCellActivationDisorder #CommonVariableImmuneDeficiency #MixedConnectiveTissueDiseaseMCTD #IVIG

Autoimmune diseases cannot be cured with any one diet or methodology. If it could, all of us with incurable chronic illnesses would jump on board. The wellness industry is largely unregulated, often lacks evidence-based principles, and preys on the idea that certain disabilities and illnesses can be avoided. “Gut health” as an umbrella term that cannot be adequately applied to autoimmune diseases like Crohn’s and Colitis. Please do not send articles like that to me or folks with IBD. Even when it is well-meaning, it is exhausting to experience because it lacks basic understanding of the issues that are at the center of autoimmune diseases at large, which are characterized by their lifelong nature and a lack of cure. Even if you have a friend with a form of IBD that has seen vast improvements with, say, a raw vegan diet (or whatever their diet may be) and you want to share that triumph, I urge you to resist. What works for one person with an autoimmune disease will not necessarily (and often not) work for another person with the same disease. Autoimmune diseases can be “under control” at times, but they cannot be cured or officially in remission. Your friend with a specific diet might find that it stops working at any given time due to a flare-up, and folks who take certain medications can become immune to their benefits suddenly. I have been on intravenous immunosuppressant drugs for over 15 years. I was on one for 5 years that vastly improved my quality of life and then one day stopped working entirely due to a build up of antibodies. It took many years to get my Crohn’s under control again with a different drug, and any day could be the day that the one I’m on stops working too.

I don’t mean this to be negative, but only encourage you to seek empathy for chronic illness patients rather than thinking you’re helping by sending an article based on the newest wellness industry buzzwords. I know that at your core you want to be helpful to your friend or family member that suffers daily, but the most helpful thing you can do is listen to their experience. And when you listen to their experience, please understand that it is only their experience and cannot be applied to others that share the same illness.

We all want to live in a world of quick cures and absolutes. We all want to believe that we won’t one day become sick and disabled. But it is deeply harmful to perpetuate this type of idea, especially for those of us already living with invisible and incurable health problems. Conflating the idea of health (often read as: clean eating and/or lower weight) with better morality is rooted in ableism and anti-fatness, and anti-fatness is heavily rooted in anti-Blackness. Before I get carried away, these things are heavily nuanced conversations. We can unpack these things all day long, and there are many ways to seek out education that provide a deeper dive into those subjects. The point of this is, I can’t be the one to speak for everyone’s experience because those experiences are not mine. You’ll never catch me giving unsolicited heath advice of any kind or pushing the idea of cures / improvements. I won’t even want to share advice about what works for me specifically because there’s no way to know if it could be replicated in another body. All your friend with an autoimmune disease wants you to understand is this. And I’m also pretty sure anyone who has ever been given unsolicited medical advice for ANY reason begs you to do the same.

#CrohnsDisease #UlcerativeColitis #IBD #AutoimmuneDisease #chronicallyill #ChronicIllness #biologic #Infusion

Entyvio infusion today. Hopefully it puts a little pep back into me. I've been so tired and just blah past week. Oh & I got to wear my free shirt from Crohn's and Colitis foundation! #CrohnsDisease #InflammatoryBowelDiseaseIBD #Infusion #Fatigue #MomGuilt

This is my cat Lilith. She is a 1 person cat. She is my little shadow. My Familiar. We adopted her for free from our county rescue. She is my bestfriend besides my S/O. She has comforted me through many difficult moments and I absolutely adore her. She brings me so much joy. I had #SympatheticNerveInjections today to treat my #CRPS , #ComplexRegionalPainSyndrome this morning . Tonight I had my #Entyvio #Infusion for my #UlcerativeColitis tonight. Masochist much?!? lol anyway, back to my cat. She is moody, spoiled, & has painful murder mittens but, I love her so so much. #ILoveMyCat #esa #Catlady #comforting