Sweet Smell of Success (So far)

I am so proud of myself for sticking to my guns and waiting to do the immunoglobulin infusion when it felt right for me, at the lowest dose possible, with a bag of saline and a showered, no-scent nurse. I feel fine. I’m stiff, sore and tired, a bit more than normal, but no big deal. The infusion site on my abdomen is sore if it touches something, but no big deal. I didn’t need to ice my belly and I hardly felt the needle going in. I think next time, though, I’ll try my thighs because I do daily abdominal massage and castor oil packs for my constipation, which I can’t do now.

My vertigo from yesterday is gone (maybe it was a neck issue in my sleep) and today, inside, I am vibrating with excitement. Hell yes!! Success! I’m usually either so impatient to try something, I take too much (Cromolyn) or I don’t want to face the adjustment period/eventual withdrawals/possible reactions, so I postpone forever (Equilibrant, antidepressants, B12). But I did this the right way. I waited, I tested everything I needed to test, I didn’t jump the gun and start where my doctor wanted me to start (3mg), I started low and it was no problem.

My biggest excitement, honestly, is having a positive experience with the premedications and it gives me hope that my reactivity has calmed down. I didn’t even fall into a drugged stupour like I did when I tested the premeds. I have no horrible antihistamine-poisoning-hangover feeling, no headache, my blood pressure has stayed stable at around 85/55 (I know, too low, but stable low). Since all these sensitivities cropped up, I’ve been lucky that my disabling dysmennorhea has abated and I’ve not had any anaphylaxis, collapses, accidents etc. (toba, toba, knock on wood), but I was worried about what I would do in the event that I’d have to have surgery or some emergency procedure. This feels great! I have an arsenal now. I might have done the MRI contrast if I’d had the confidence at the time to pop some Prednisone, Benadryl and Zantac. I’ve still never taken my EpiPen, but, if ever I have to (toba, toba, KOW), maybe I won’t be as sensitive as I was in the past (when an endodontist accidentally put epinephrine in my numbing injection, it felt like I was having a heart attack). I can’t tell you how good this feels. I might finally try daily H1 and H2 blockers to see if they make a difference in how I feel overall. I might sit down with a bottle of wine, salami, aged cheese and kimchi.

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I set this all up in our spare room upstairs to keep away from the dogs and so I could sleep if I needed to, but really I could do this anywhere. The saline bag has a carry pouch with a shoulder strap and is infused by a battery-operated pump. Once the needles are in and covered with tape, I could conceivably be on the couch with my dogs, watching TV. The tricky part is navigating the bathroom with one straight arm while carrying the saline pouch and holding the SCIG pump and managing not to rip out any of the needles.

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Honestly, the most daunting part of the whole experience is the amount of water I have to force down my gullet. On Thursday, I drank four liters. Yesterday, I drank over five liters and I’m going to try to do the same again today. Having to do this three days a week, every week makes me want to vom. It also wasn’t fun to have a chatty stranger in my house, albeit a very nice, low-maintenance one (I kept worrying that she didn’t have water or snacks and that her back would get sore in the upright chair). She was only here fewer than four hours, but as my dose increases, I assume the time will increase (most of that was infusing 500ml of saline, the IgG itself only took an hour). Next time I’ll just let her know that I want to rest and meditate through the whole thing and I’m hoping after the next few infusions she’ll just be able to hook up my IV and leave and I can place the subcutaneous needle myself and remove the IV at the end.

So, the plan is to double my dose next Friday to two grams, then increase by one gram each week until I’m at five and hold there for a few months. Perhaps even graduate to IVIG eventually. I’m happy this started at the beginning of flu season, too, because that’s what Dr. Chia recommended. He thought I should get a little boost in September and January and also if I traveled anywhere so I would be less in jeopardy of succumbing to a virus that would take me down. And maybe, just maybe, it’ll make me feel better over all. A lady can dream.

Thanks to everyone who sent positive thoughts my way. You carried me through.❤

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8 thoughts on “Sweet Smell of Success (So far)

  1. geaux2girl says:

    Yay!! I don’t have enough exclamation points for how thrilled I am over this!!!!!

    Liked by 1 person

  2. Jessica Wilson says:

    Hooray that is wonderful! I am so delight for you and so happy it went well! ❤💜💛

    Liked by 1 person

  3. Am glad you are having some success, Elizabeth!

    Liked by 1 person

  4. Jak says:

    Yipppeeeee! I’m so so pleased it’s gone well. You deserve some luck for a change 🙂 x

    Like

  5. So glad to hear the great news. May it continue! x

    Like

  6. Lesley says:

    A suggestion … ‘Wired for Healing’ … a book. It is about how for so many of us our limbic systems get stuck in terror mode and so we become more and more sensitive to everything and the limbic puts out a myriad of chemicals creating a lot of different kinds of ailments – inflammation and oxidative stress. We get stuck in the merry-go-round of doctors and trying things to get well … and we never really do. And for many addressing the limbic system dysfunction starts the healing process to wellness. I stumbled across your blog when looking for information about ‘thiols’ … and thought I’d share.

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  7. […] for 4 months now and it’s become routine (my into to this treatment can be found here and here). Not only routine, but to keep the success going, my superstition causes me to keep everything […]

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  8. Nora Byars says:

    I have one nurse that disconnects the pump toward the end of my Ivig infusion and squeezes the bag to empty it faster. Two times she did this once leaving me with an 80/40 bp and the last my systolic was 180 (I didn’t see the rest). She disconnected my IV, slapped a bandaid on it and left…fast. I called the service and she won’t be back. Isn’t that dangerous… Anyone else have this kind of experience?

    Liked by 1 person

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