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What's New in infusion
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Let’s talk about what your friend (it’s me, I’m the friend!) with an autoimmune disease wants you to know…

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

12 reactions 6 comments

Infusion treatment

I have my first infusion treatment coming up, and on top of the usual fear and am I going to feel during, and after? and I going to have a severe reaction? was this the best choice, etc.? One question keeps popping up without the resources to find answers, so here I am ....what should I bring?#Rituximab #Infusion

4 reactions 6 comments

Emotionally Numb

Who's the unlucky person that gets an anaphylactic reaction after an iron infusion. Me that's who. It was a severe allergic reaction that caused difficulty breathing, chest pain, rash, and severe itching.

I had it all planned out,
1. Get IV.
2. Get lab work done,
3. Get Iron infusion
4. Get Inflectra infusion.
5. Go home and start to feel better.

Fu#*ing body just doesn't want to follow the plan. Seems the plan includes hanging out with Mr. Sharp Belly Pain for who knows how long and starting Prednisone again.

Emotionally numb. #Infusion #IBD #Anemia #CrohnsDisease #ChronicIllness

1 comment

Family response: "What's that?" #Infusion

There's me. Once a month. I used to have an insurance policy that shipped the prepackaged syringes to my house, jab it in once a week, and go. Now it is one day of dread, one day of getting infused and one day of resting up.

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Infusion day #CrohnsDisease

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


Iron infusion

Has anybody had Venofer (iron sucrose) infusions and experienced side effects?
Last year when I had iron infusions they used a different medicine and I had no side effects other than the exhaustion from being in the hospital/oncology department and bombarding my body with a foreign substance. This year they’re using Venofer because I guess a lot of their patients had bad reactions to the other med at the dose I was prescribed so they have a policy against it. That’s all fine and dandy I appreciate the precautions, but I’m getting side effects that complicate life more than my illness already does. I get a headache as soon as the med hits my IV and I also get upset stomach and muscle aches on top of the exhaustion that I mentioned earlier. Should I mention something to the prescribing doctor or just power through the rest of my treatment?
Also today they missed 3 times before they finally didn’t blow a vein, so I have pretty bruises on both arms.
#IronDeficiencyAnemia #Infusion #EhlersDanlosSyndrome #ChronicPain #ChronicIllness

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My infusion buddy #EmotionalSupportCat

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


Has anyone heard of a Meyers Cocktail infusion for fibromyalgia and chronic pain?

A well-respected pain doctor in Boston told me that her first choice for treating fibro symptoms is a monthly Meyers Cocktail infusion. She said that her patients have lots of success with it, and don’t need any additional pain meds. I live in Vermont, so would have to travel to Boston for the treatment. I’ve never heard of it, and it doesn’t seem to be mentioned by anyone on his site. I’d love to hear about experiences with it, even if for reasons other than fibro. Thanks! #Fibromyalgia #ChronicIllness #Infusion #ChronicPain #treatment #Fibromyalgia treatment


First Simponi Aria infusion on Tuesday - anyone have any advice? Thank you ☺️

I’ve been told it should be quick, but please let me know if you have any advice for me! Thanks so much!!
#ChronicIllness #ChronicPain #Infusion