Monday morning one of the heavy smokers stopped in front of my open window. I started coughing and choking alarmingly fast. I coughed up lots of crud and then went about my day. A few hours later I started wheezing like I was going to die. I coughed up amazing amounts of crud. Used my albuterol rescue inhaler and just kept getting worse šŸ˜® I was to the point of thinking 911. Then it all went away as quickly as it had happened. What the heck??? But….now my chest hurts like crazy. That was scary! It’s not often my lungs go nuts like that.

I did OK until around 6 PM, when I took out the garbage and got my mail. Cigarette smoke from the outside smoking area wafted over towards the front door. I started coughing deep and rattly. It was instant. I had to quick come back to my apartment. After that, my eyesight and brain power were not good. I sure didn’t feel like blogging. There weren’t enough available brain cells. I wonder why my lungs have become so reactive? Smoke ALWAYS bothers me, but sometimes it gets extreme like this.

I don’t feel very well today. So far my lungs are behaving, but other parts of me are not amused. I ran out of Miralax, but still had some generic Metamucil. My guts did not like the transition. I have to take something like that every day because of my rearranged anatomy. With the incisional hernia and pelvic area collapse, plus MG weakness, it’s just not easy to “go”. My insides are in a bit of a knot.

I also made too many changes at once. I should have phased them in, but I was impatient. I also quit taking generic Zyrtec and Prilosec. Both might be affecting my breathing and lungs. I don’t ever have heartburn, but was put on Prilosec to keep from breathing in aerosolized acid. It was causing me to choke a year or two ago. I HATE medicines, whether OTC or prescription. Most have worst side effects than helpful qualities. People NEED their stomach acid. I decided to see if my guts will digest better without Prilosec. I am also allergic to “everything”…..but I don’t want to take Zyrtec forever. I have a history of quitting things cold turkey, then adding back only what I absolutely need. As far as I am concerned, Mestinon and Motrin are my must-haves. I wish I could ditch the Motrin as it’s not good for me long term. I have been on it more of my life than not. Sigh…..

One thing I will gladly employ is IVIg. I have been thinking about my very healthy home teacher who donates plasma. I want some of his! I think blood products are much like food. Food can be slopped together and it stops hunger, but food lovingly prepared nurtures in a deeper way. I like to think that people with good attributes who donate blood or plasma are even better than from someone who isn’t happy. After getting infusions, I have dreams and impressions about the people they came from.

West Nile Virus has done more to mess me up than any single other thing. MG sucks, but most problems are clearly understood. WNV is still largely a mystery. For people like me, it causes all sorts of neurological problems…..sometimes amplifying my MG and sometimes bringing whole new challenges. I think the worst thing about it is the lack of specific medical knowledge. I don’t want to take medical marijuana or adderall. Several folks in the WNV community swear by these treatments. Part of it is I just don’t want to take ANYTHING, part is that these substances can be addictive. How do I know if the benefit is worth the risk? I hear there is now more hemp research. None of what makes a person high, but lots of the part that helps healing.

There are 2 treatments for spasmodic dysphonia….botox injections into the vocal cords or surgery. So far, all the people I have met online with both MG and SD, do not get botox because it might kill us. A few are using marijuana or hemp oil to treat SD. It seems that no matter how much I try to ignore that treatment, it pops up as a solution. I would be more likely to try the hemp oil. But….of course Medicaid isn’t going to pay for “alternative” treatments, so it’s probably all a moot point.

One of my pet peeves about any of my chronic illnesses is the use of “alternatives”. People with means can and do try all sorts of things. I can’t. A simple massage would do wonders! Instead, I have to go with the expensive treatments the medical community benefits from and Medicaid will pay for. Sigh…..

On the WNV list, someone posted about how long they have had WNV. Since I know the day I got bit, I can use an online calculator to figure out how long I have been affected by WNV. 919 days.

919 days can be converted to one of these units:

  • 79,401,600 seconds
  • 1,323,360 minutes
  • 22,056 hours
  • 919 days
  • 131 weeks and 2 days

If you come away with anything from my blog, I hope you realize how devastating West Nile Virus can be and that you need to wear bug spray when outside with mosquitos!

It’s bad enough having MCTD and MG as my major health challenges, but add WNV and nothing is or ever will be the same again. Better to avoid it, rather than deal with the consequences. Researchers still say about 80% of people bit by an infected mosquito don’t even know it. But…..many of those people are getting kidney disease and other problems years down the road. Please… careful!