Neti Pot Amoeba

I keep seeing various articles like this one about people contracting the Naegleria fowleri amoeba via a neti pot.

First of all, you should never use tap water in a neti pot. I find them to be a high risk item anyway, because they must be properly sterilized to prevent infections of a number of baddies, so I prefer to use a can of sterile saline to ensure my safety. My doctor has said numerous times that neti pots and saline irrigation systems must be sterilized often and you must use distilled water. The packaging also says this.

Second, this amoeba must travel through the sinus cavities. This means it could have been contracted in the shower, bathtub, any number of ways. Usually reports of the amoeba surface after swimming in a freshwater lake.

Finally, how bad is this water treatment facility? The amoeba "isn't supposed to survive" the treatment process. Sure, you can't get it from drinking it, but people regularly interact with water via their nasal passages without any neti usage. I think that the use of a neti pot or similar system is far too beneficial to dismiss or stop doing because of these incidents. If people follow manufacturer (and their physician's) instructions, they wouldn't be using tap water in these things to begin with.

A Central Line

There has been some chatter lately among my PIDD friends about central lines, the pros and cons, etc. A healthy friend saw some of it in the news feed, particularly an xray with a port shown, and sent me a Facebook PM.

"what's that thing in that girls chest? does she have what you have? will you have to get one of those sometime?"

I answered that it is a central line aka a port, and while I don't need one currently, the plan is not to give me one anytime in the forseeable future, but if I need chemo or something, I will probably have one installed. This is true, but it isn't the whole truth.

The whole truth is that I will very likely need one of these, or a picc line at the very least, at some point in my lifetime. A high number of chronically ill people do. With the odds of my getting some form of cancer being pretty good, a port is not far outside the realm of possibility. It scares me, so I don't like to talk about it or think about it. A port means critical illness to me, and I really don't want to have to go there.

Unfortunately, I have some friends who don't have a choice right now and that's really challenging me.

Concern

I know a lot of people with immune deficiencies. They are a constant source of love and support, especially lately. Knowing these people the way I do, I carry a lot of worry for them.

Two people who are very dear to me are quite ill. They each have very unique and scary situations. Things that I am not entirely sure I could deal with. They both need extra prayers to whatever deity suits your beliefs best.

One is having surgery at 11am, so whatever you've got, she could use it.

A Note to Smokers

I'm not going to sit here and lie to you. Yes, I have smoked cigarettes socially in the past. Could I dream of doing that now? No way. The nature of my disease progression has been into asthma and autoimmune lung problems, so smoking would not only be a bad idea, but a costly one to me in terms of overall well-being almost instantly.

That being said, I have friends who are smokers. Sometimes they complain about the lack of places for them to smoke or about people who ask them to not smoke in a certain area. I've been known to speak up to someone who is smoking where they lack rights to, because it actually matters to me. Most of the time, I suck it up and walk through or behind or whatever, but when someone is smoking in a nonsmoking area, it really bugs me. You make a personal choice to smoke. I didn't make the choice to have CVID and some sort of amorphous autoimmune issue. When you smoke in inappropriate places, places where my lungs should be getting a break, it causes me physical pain.

What do I mean by physical pain? I feel as though that cigarette has morphed into a torch, which has been inconveniently shoved into my lungs. It costs me enormous piles of spoons that I would much rather spend elsewhere.

I would like to make a request of my smoking friends. Please be polite about smoking and don't smoke where you aren't supposed to. It really can become a matter of life or death on a bad asthma day. I may look great, sound great, seem fine, but I could have had an asthma attack a couple hours prior. I'm not asking that you quit smoking or not smoke in public. On the contrary, I'm asking you to abide by the social covenant and laws set out by various jurisdictions. Don't smoke where you aren't supposed to. Is that so difficult?

"Is that like AIDS?"

Today is World AIDS Day. I used to work in an AIDS org. This day was once a huge deal to me.

Right now, though, I feel pretty bitter about the whole thing.

Once upon a time, I used AIDS as a way to explain my immune deficiency. Those days have passed since it seems that no one can understand that, no, I don't have AIDS, and no, what I do have is not communicable. Hell, I probably won't even give it to my kids.

It frustrates me now that I'm older and understand the system a little better because AIDS makes PIDDs less visible and siphons away a lot of research money and immune system attention. there have been major developments in AIDS in the past 30 years. Not so much with PIDDs. The latest and greatest development for us is adding a tissue expander to the sub-q administration method. This is hardly a treatment breakthrough, I'm sorry.

Furthermore, there will be a cure for AIDS in my lifetime. There won't be one for PIDD. There might be a better treatment option available, which is my hope, but they don't even understand the mechanism enough to even begin knocking on the door of a cure. It's sad, but true.