Wednesday, 3 October 2012

No more nose spray (accidentally didn't post this a few days ago)

All I could smell was nose spray. All my nose was doing was burning. Don't think that means it was working. So stopped the spray today and we'll see how it goes.

I've still been working with the plastics. I can breathe the oxygen straight from the cylinder and it's great, but not loving any of the tubes yet. Brought an IV fluid bag home and of course the smell was insane (it's the usual PVC with pthalates, but improved after a bit. We poured some fluid into a glass and guess what? 50 times more potent stench than the outside of the bag!! I had notions of drinking it if it seemed ok to see if  I reacted (ps do NOT try this at home without approval and supervision by a physician), but it smelled so horrid that drinking it was an impossibility. Yeesh; it's no wonder every injection I've had has caused a reaction. Stupid Plastic. The thought of that going straight into my veins makes me shudder. I pray I can find an alternative and don't have to face that.

I had a phone consult with one of the more prominent environmental illness/MCS treatment clinics in the US in case they had ideas that I hadn't come across about surgery. It was good because they pretty much agreed with the whole plan. Air out plastics, try to find ones that aren't as bad if possible, glass used to help but not made anymore, bring in own linens/oxygen tubing/mask, avoid inhaled halogens, avoid Latex, try to get isolation room if possible, premedicating with steroids etc. They said they've come across a lot of people with reactions to the typical medical plastics and for some of them they work on finding alternatives or desensitizing them if necessary if there's enough time. They also mentioned they would give post-op IV Vitamin C, Glutathione and oxygen. Since I haven't trialed those that won't be an option. But I'm very impressed that they do phone consults and it was only $25!! Nice to talk to someone who's familiar with the chemicals out there and doesn't just go on about how it will be fine because they've never had a problem with other patients.

Have found almost all the medications I need in preservative free formulations. Just a couple left to go. Have linens and gowns airing out outside before washing and washing and washing to be ready to take in with me.

Once I have my whole OR and hospital stay plan I will try to write it all up coherently in case it helps anyone.

** All of what I say is random and specific to me. None should be taken as a treatment plan or trialed without consulting your doctor**

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