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    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


    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.

    See full photo

    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

    See full photo

    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


    Anyone who has been on infliximab and has not been feeling themselves?



    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


    My #ketamine #Infusion Day 1 - My Experience-

    I’ve read some people talking about how Ketamine infusion impacted them in some weird ways, so I just thought I’d share what happened with me. I’ll write out my full experience in the future, but right now there are some things I’ve noticed different that I feel are good changes.

    Since I had my infusion, and woke up for I did have a bout of sleepiness, I have noticed a decrease in impulsive feelings; my reactive (don’t think before I talk, say hurtful things) has decreased immensely also. Self harm and suicide are, at the moment, not an issue I am thinking of and that is a massive change from my normal chaotic, loud mind.

    I also am able to make choices that are not out of trying to please others, which is MASSIVE to me. I struggle a lot with trying to convince someone they are the world, only to have mistrust and abusive words spewed at me. While I do not like myself anymore than I did before the Ketamine, I do seem to be more aware of what I do and do not deserve, and moreover I seem to be able to stand up for myself without feeling guilty, when I know I’ve truly done no wrong. This was impossible before, but somehow knowing that all I can do is speak truth and be the best person I can be; and then it’s up to the other to either trust or not trust, believe or not believe.

    I have also noticed I have more hope for the future, not tremendous hope so I’m hoping as my upcoming infusions come and go I will be able to grasp what it is to truly believe in myself. But, the seed has been planted so to speak, and I feel that the future isn’t hopeless, and that maybe my dreams are not unattainable. I can see it, I hope I can achieve it and without so much
    screaming in my mind perhaps I’ll be able to do more than I’ve done in years.

    I’ll keep this post updated on that…

    Though this was just my first infusion I have to say thus far I am so impressed. I don’t feel happy, but I do feel I can maintain without destroying myself. I am on a fine line, such as I know if I were to let someone who does nothing but talk down to around me it could break through this ketamine inspired defense. But, as noted, I am able to step away without guilt so long as I can honestly say in my heart I didn’t do the wrongs I’m accused of. To have the control back over my life, to know that I don’t have to feel guilty about turning away when I’ve done nothing but be honest in the face of hurtful, untrue and straight up mean accusations because I slept “too long”- knowing I can say no I don’t have to hurt myself by entertaining lies or mean words is so liberating. Don’t get me wrong, it still saddens me, but I at least have am certain I’ve done all I can.

    And that is a lesson for life, I suppose.

    When you do your best and you know you have done your best when...https : // there is the rest of my rant lol #BPD


    I’m taking Orencia infusions once a month since August 2018. I’m starting to get sores in my nose and my whole mouth burns plus my tongue my jaw hurts

    Has anyone gotten these side effects? #RA #Infusion #RheumatoidArthritis