Another year almost halfway over...

Yay! I'm back in my blog! If you follow me on twitter or instagram, you know that I couldn't get into my blog and had the worst time getting the password reset. While I was stuck out of it, I was updating on my gofundme page but here's a quick update:

I had my new VP shunt installed in March. It has been going okay except for some pain following the shunt valve reservoir and tract. But it's been scanned quite a few times and everything says it's working fine.

I got my second MS med infusion. Last year I was already OOP maxed out. This year, my part of that plus my surgery have eaten up my OOP. So good news (I guess), I've eaten away at my OOP for 2019 already. Bad news, if I want to go back to the infusion center I just had it at that I liked, I have to pay about $2k before my next infusion.

Just for fun, my autonomic issues have pushed a little further past POTS to further autonomic issues which brings me to the new, fun medical stuff.

I have been dropping oxygen levels randomly. I also have a nodule on my lung. Well, x rays continue to say that I do and it seems to become easier and easier to see in each one. But I had a CT between two of the x rays and the nodule is nowhere to be found. So, there's that. I've also been diagnosed with an asthma-like issue and restrictive lung disease. Anyone who went to highschool with me and saw my breakdown at not being able to make the CPR dummy light up, won't be surprised that I have issues expelling air. The good news is I get better at that with an inhaled steroid. The first at home inhaled med didn't work by itself so the other news is I need a nebulizer with a different med also. It's taken hunting people down today to find that they didn't bring the machine because my insurance won't cover another one for another year. They are correct, I had a machine. It also broke and stopped working while they were still charging my old insurance company monthly for it. So, that's not happening at least until I can talk to my insurance company claims person on Monday.

I'm just tired medically. The other day the pulmonologist and then my home nurse yesterday kept explaining how I can't panic when I have the breathing issue and/or drop of oxygen levels I've been having. I don't panic. I may have the first couple of times but now I have just chalked it up to another medical thing to deal with. Which is sad and crazy at the same time.

That's the super short version of the update. I have spent so much time with medical people on the phone, in the ER and doctors offices this week, I don't even know what I have said to someone there or just thought I did lol

#MultipleSclerosis #neurosurgicalshunt