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Monday, May 20, 2013





I never in my life thought I'd end up like this

I think it's safe to say that breathing and our lungs are the biggest things we take for granted, even with something that seems as simple as a cold much thought (beyond complaining) isn't given to them.  It's hard for people to understand what an attack (or event) is like, unless they've had one or witnessed one. So I decided to post these mild event's I had a few hours apart a few weeks past. They have separate posting dates on youtube because I edited the second one, took me awhile to figure out how to do it.

Since recording these events I've had several more, so far they have remained mild. When these attacks happen I have to try control my breathing, not panic, get to the nebulizer and get the medication in it THEN turn it on. Thankfully 'W' is often close by and helps me, if he's not Annie our 16 month old Toy fox terrier will alert him if he's home at the time. I've been trying to come up with a way for you to have some idea of what these attacks are like, this is what I came up with ......

place your hand over your mouth, lightly at first and inhale, exhale through your nose. Each time you inhale push your hand firmer over your mouth. Eventually you'll find it extremely difficult to inhale. 

That's the closest I can come to give you an idea from the very mild to the worst, they can last from minutes to hours. I deal with every stage, for the most part I don't know when it'll happen. Occasionally I'll feel a tightness in my chest, wheeze as I breath and start sweating, this is a sign to take action. More often than not though they hit suddenly without any warning. In general I get out of breath very easily, I have to remind myself not to talk and walk. I'll have times from a few weeks to a few months when I only have very mild attacks, then they'll start happening more frequently, they'll hit harder and faster, take 30-45 mins to be able to breath again or end in a 911 call, luckily the station is just down the road.

Just over 20 years ago living in Philadelphia I had a pair of cockatiels (Honey and pie), their cage was on the top of a dresser, it took me a month to find a neat pile of seed under it. We (cwg and I) lived in a beautiful victorian that had been turned into apartments, unfortunately due to lazy tenants it came with resident mice. Knowing it was mice doing this and not thinking I reached under the dresser, my face on the carpet looking at the seed pile, I started to scrape the seeds towards me (my face). My arms, face, any exposed skin, my throat AND MY LUNGS started at first to itch then burn. I sat there coughing uncontrollably barely able to catch a breath, my lungs and throat on fire clutching the phone not sure if I should call 911 (no insurance then) for fifteen minutes. After getting myself in the shower, washing my hair, sitting in the steam for an hour I could finally breath without coughing and my lungs no longer burnt but my throat still itched. Anytime I was in an area that had mice my skin and throat would itch, I'd start wheezing. I was given an inhaler, was told I had asthma and that was extent of my breathing problems (so I thought).

Initially I had few problems with asthma but I started having problems with sudden changes in air temperature (hot to cold), it felt like I had Raynaud's in my lungs. I would get an uncontrollably painful cough that calmed after going back into a warmer air temperature (I had dear friends then who loved the air conditioner ice cold). I also started suffering from more respiratory infections, bronchitis and pneumonia (this was also when I started feeling generally ill). About 11 years ago I bought a ceramics studio (stubbornness made me do it) I was careful when running the kilns, the fumes can be toxic and would damage the lungs. The clay itself was ok until it dried, any dust from it was very fine, contains silica that is extremely damaging to the the lungs, again I was careful, but not careful enough. Unfortunately the soil in kansas also contains silica, is fine when dry and when the wind blows it gets everywhere. Our house backs up to woods with all types of flora and fauna allergiens and my studio had mice.

Within months of working myself to death trying to get the studio running I started having trouble breathing. It got to a point I couldn't raise my stubbornness past crawling on my hands and knees to go to the bathroom. In addition to not being able to breath I was fighting a myriad of health problems that included Lupus, Hashimotos disease and possible tick borne diseases (more on this later) plus heart problems. The one person I thought that would be there for me, somehow managed to walk past me laying in the recliner for three days. It didn't occur to them the reason I hadn't gone to the studio or even taken my dog MrT out in three days was due to being ill (it's not the first one to have done this to me). It's only because my mommy had called from England that I was bundled up and taken to hospital.

I was shocked to hear I was to be admitted for a week with respiratory distress, given two types of IV antibiotics, IV steroids and for the first time nebulizer treatments. In the past any of my respiratory infections were dealt with  several types oral antibiotics and oral steroids. On the day of being released I found I was to be on oxygen with the possibility of being weaned off it (which didn't happen).

I never in my wildest dreams thought I would end up like this, I was told in Dec 2013 by my now lung specialist who specializes in critical care (intensivists), pulmonary disease and his amazing team at Shawnee mission medical center that my lungs are shot. I was transferred to Shawnee ICU from our local hospital after several days of being moved in and out of their ICU (intensive care unit) because they didn't have the specialists nor the care I needed.


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