Firsts and Then Some: Part 2

What do you know, a second blog post in as many days! I realized there were some more firsts that I wanted to talk about, so here we go. This post will deal more with some of the firsts I’ve had recently that deal directly with TBM. I think I’ll begin earlier in the year, just after my last blog post prior the part 1 of this one. As I alluded to in part 1, it’s been a hell of a difficult year for me health-wise. To be honest 2019 didn’t end on a too high of a note where my health was concerned, so it shouldn’t have been a surprise to me that the trend continued into the beginning of 2020.

So, here’s the first first I experienced in 2020. Mid-January I decided to surprise my family and drive home for a quick visit. I had not come back to Missouri for Christmas because I had been too ill to go. I decided on a Thursday afternoon, after visiting my doctor on that Tuesday yet again, that I really felt the need to visit with my grandma, who is suffering from dementia and by all accounts did not have a very good Christmas. I loaded up my car and set out to make the 15 hour trek across three states.

I stayed the night in Hayes, KS and was up at the crack of dawn to continue onward with the journey. As I made my way across Kansas it rained and rained and rained and rained some more. I also watched the temperature gradually rise. This may not sound too concerning to you, but to me it is. To me it signifies a very good chance that the mold count, even though it’s the middle of January, will be off the charts and this, my friends, is very bad news for me. My body is extremely sensitive to mold of any kind due to residual effects of mold exposure. I am a walking mold detector - I’m so not kidding about this. Give me a call I'll be your very own Moldbuster - I don't do ghosts, though!

Many of you may not know that I lived just outside of KC for many years. (It’s a fantastic city BTW!) As I approached KC I decided I needed a new Chief’s sweatshirt as they were in the playoffs and headed to a Super Bowl win! CHEIFS!!!!!! (Bear with me folks, this is going someplace . . . ) I do not know how many stops I had to make to even find Chiefs gear, let alone something I actually liked. This was surprising to me because in Colorado because Broncos gear of some sort is everywhere you look; and I mean pretty much anywhere you go you will find something Broncos related. Nonetheless, I was determined to find something, so hunting I went. My mom called while I was on the hunt and asked what I was doing. I told her I was looking for a new Chiefs shirt, but couldn’t find one. Here’s where I'm going with this story and how our conversation went:

Mom, “Well, where are you looking?”

Me, “I was having trouble finding anything in the Springs, so Lani and I started driving

east.”

Mom, “Did you find anything? Where did you have to go?”

Me, “Independence.” (FYI, Independence is a suburb on the east side of KC.)

Mom, “Oh, well, where is that? I don’t think I’ve been there.” (Um, yes, she has MANY

time!)

Me, “Um, you know, Independence; right outside of Kansas City. I couldn’t find anything

in CO, so we just kept driving east . . . “ (Long pause as what I said sank

in . . . . )

Mom, “SSSHHHHOOOONNNNAAAAA LEANNE!!!! What are you doing? You were just

at the doctor two days ago. You’re going to make yourself even more sick. And

it’s pouring down rain and way too warm. . . . .” (Yep, the lecture continued for a

quite some time.)

And here is said Chiefs' sweatshirt. It took about 5 stops to find it, but it was a good choice!

I heard her and all of her concerns, but it was too late. In Missouri I was! How as I

supposed to know it was very unseasonably warm, raining buckets in the middle of winter when it’s supposed to be cold and snowing, and have an environmental mold count that was off the charts? Sure, I could have checked the weather forecast, but where's the fun in that? Dang global warming. It actually was a really nice visit, for the first few days any way. By Monday it started going downhill very quickly; I was sick. I decided to start back to Colorado and barely made it to my sister’s, who lives about 2.5 hours from my parents on the west side of St. Louis. I could not make it any further. This is where the first comes. My dad had to come drive me all the way back to Colorado. I tried to be a good riding companion, but was not very successful at all. I kept the podcasts in cue, but as soon as a new one started I was out cold. I felt really bad - physically and mentally. I guess mom was right to lecture me after all. She usually is . . . Listen to your mom, folks. They do know a thing or two about life and especially about you. And a BIG thank you to my dad for volunteering to make that drive - did I mention it snowed and iced all the way across Kansas and we had to drive so slow, making the interminable length of Kansas that much longer? Of course it did! But you know, about 30 miles into Colorado, the skies cleared up and the sun in all its glory popped out. It was as if God knew I made it home safely and was very happy about it. I was too!

Well, from here 2020 just got on a downward roll and has continued to keep rolling; presumably for most of us at some level. Like so many others, I had been hopeful heading in to 2020 that it was going to be a fantastically amazing, wonderful year. It was a new year, a new decade, and bore the name of one of my favorite news programs. How could it not be a good year? We all had such high hopes for this new year. Man oh man, were we all so completely and utterly wrong. Knowing what we all know now and have got through so far this year, that kind of makes me laugh.

So, no matter what I tried or what my ace medical team tried, I was not getting better. In fact just like 2020, I myself, go on a downward roll and just kept going down. This downward momentum led me to another first; my first hospital stay due to TBM. This, my friends is a first I could go my whole life without ever having to experience. After an urgent care and then an ER visit my pulmonologist at the time decided to admit me for observation so that he could be directly involved with my care and not reliant upon doctors outside of National Jewish. As it turns out, he did not have privileges at the hospital in Denver where he sent me even though it is directly affiliated with National Jewish and I was going to be seen by one of his colleagues. What the what?!?!? I was not happy about this bit of news because I had been told I would be seeing him.

It ended working out for the best, as this was the first time I met my current pulmonologist, Dr. James Woodrow, who I absolutely adore. I immediately knew I was going to like him. He is hands down one of the best doctors I’ve ever worked with. He listened and he got it. Don't get me wrong, I really liked my previous pulmonologist, who is also an amazing doctor, but sometimes you just click with a doctor and they just get you. A friend of mine was visiting when he came in. She stayed while I conferred with him. After he left, she was a bit in awe and said she could tell what a great doctor he was because of how focused he was on me and how intently and actively he listened to me. I cannot tell you how blessed I feel to be a patient of his. Even though I no longer live in Colorado, he is still my primary pulmonologist and I will continue to see him a couple of times a year.

I was only in the hospital overnight and was placed in a room in the ‘holding’ area. Dr. Woodrow said that he did not want to keep me any longer and would absolutely not send me up to the pulmonary floor `due to, “some seriously nasty stuff” up there. Care to guess when I was in the hospital? You betcha - the first week of February; just as the Corona virus was making its grand entrance into the US. I definitely dodged a bullet with that one. Btw, my heartfelt thanks goes out to everyone who has served and continues to serve on the frontlines battling COVID-19. Dr. Woodrow, who is an ICU pulmonologist, was one who served tirelessly for months selflessly helping others. He said he'd never seen anything like this virus. Being acquainted with so many people who work in the respiratory are of medicine I cannot tell you how many times I've heard this exact thing. This thing is real and real bad for those of us who are susceptible in any way.

Before sending me home Dr. Woodrow did order a dynamic CT in order to see if my TBM had progressed any since the last image that I’d had. It showed pretty much the same full collapse as the last CT had shown. Dang - I still had it! No magic wand was going to wave this thing out of my body. The one thing different that we saw, which leads us to my next first, was that I had started trapping gas in my left lung. Thanks to TBM the opening into my left lung collapsed and is all but closed. Combine this with a nasty bout of asthma and it’s a bad, bad deal and I felt bad, bad, bad. He changed up some of my asthma medications, increased my nebulizer treatments, and increased the amount of time I spent attached to Pappy, my CPAP. Let me tell you, I'm eternally grateful for Pappy. I have not particularly cared for having to spend so much time with him this year, but gosh what a relief it is when I feel my airway being forced opened by the gentle air pressure Pappy sends their way. I may need to look into getting a more portable Pappy as I sometimes have to spend hours upon hours attached to him and cannot go very far - you know like six feet is about it.

Oh, I just about forgot my second best friend on this journey - Prednisone. I’ve ingested entirely too much of this worst, yet best, drug this year and we still have three and a half months to go. Between being quarantined

and on steroids, I ended up regaining about 13 of the 41 pounds I’d lost. I’m so thankful it was not more, though. I’ve actually lost five or six of those pounds as I write this, so it's looking up and it could have been way worse. All of the ‘roids I’ve taken this year have led to another new thing happening within my body. I now bruise extremely easily. I have huge bruises all over my body and most of them I have no idea where they came from. I'm talking deep, dark purple and blue and magenta bruises that last for weeks on end. I also now get a nice “blood rash” which shows up a week or two after I begin another round of the good stuff. It’s always runs along the top of my right arm, just above where my watch sits. It’s confounding and not the least bit pretty. But hey ya'll fall is now here, so I won’t have to worry about showing off my maze of bruises because I’ll be fully covered in multiple layers from now until next spring!

Another first, this one's kind of big, that happened is that I was awarded full disability. It took over two years to become a reality. It was a bittersweet relief. I was so thankful to not to have to worry about trying to work through exacerbations and then freak out about my finances when I could not work for weeks on end. It was a relief to know that now I could do things on my own time and not have to worry about disappointing bosses and co-workers. Actually, because I am such a dedicated/hard worker, it's more likely that I worried them immensely and would be forced to go home because I tried coming to work on days I knew I shouldn't. Mind you, I know my body well enough to know the difference between an asthma/TBM flare up and any other type of virus that may be contagious. I would never expose anyone to anything contagious just to I could go to work.

With disability comes yet another first for me. After two years of receiving disability one is automatically enrolled into Medicare. Yay me - my disability was backdated 1.5 years! So, come November 1, I will receive Medicare. This is again, bittersweet because I should have a good number of years left before that became a part of my

life. But it's here and I've been educating myself on it the last couple of months. Let me tell you it's not that easy to grasp. I have a Ph.D. in communication, meaning I know how to write and I read at a pretty high level. I found myself having to read and reread paragraph after paragraph because it all seemed to be going in large, overlapping circles - which is the case with most anything dealing with insurance. Thankfully, my bestie sells Medicare supplements and was able to explain everything to me in a manner that makes sense. Oi, there's so much bureaucracy and unnecessary red tape when dealing with any government program. It is ridiculousness at its best. Because there's so much to say, I will write more on the disability and Medicare process in a future blog.

Quarantining and dealing with a worldwide pandemic had definitely been a first. None of us could see this coming or know the extent to which our lives were going to be completely upended and turned around. I'm not going to go into this topic too much as there's a pretty good blog post fluttering around my head about it. I will tell you the first few months I was in complete isolation and abided by the recommendations of my doctors to stay away from people at all costs. I left my house once a week to run out to buy groceries. More than once I was reprimanded for even doing this. However, it is what saved my sanity. Most of the people telling me to stay home had people they lived with to keep them company. I did not. I needed to be out amongst the living if only from afar for a few minutes a week. I now live with my parents until I can find a new home, but I still do not spend any extended amount of time with anyone other than them. My mom and I run errands together. Occasionally we will eat out, but I'm adamant about being at a table as far from other people as I can get or outside and we do not linger - in, order, eat, out. Boom! I still avoid touching, hugging, or just being too close to people in general. The few family members I have seen since being back in Missouri tried to hug me and I recoiled as if a cobra is lunging at me. One day we'll hug and be able to enjoy being with all of our family members at once. Now that's a nice thought!

Even though there have been a few more, I'll just share one last first with you. Last Wednesday evening I had my first battle with a mucus plug. It. Was. Awful. I've had a couple of little issues with mucus since the onset of TBM, but nothing like this. I had not been feeling great for a couple of days, but it was nothing serious - just the onset of fall allergies and being tired, a little achy, and having an earache. For quite some time I've been having issues with retaining fluid in my ears and am working on getting those fixed, but of course the day I saw a new ENT for the first time a week and a half ago I did not have fluid in my ears and he told me I just grind my teeth. Well, I do do that, but I can also stick the very tip of my pinky finger into my ear and it comes out wet when there's fluid built up in the canal. When there's a fluid build up my ears hurt like hell and my eustachian tubes are swollen, making it very painful to turn my neck. They will also gurgle quite a bit and sometimes makes it feel as though I'm listening to things underwater; probably because I kind of am! So, after dinner last Wednesday I sat down to run the handy dandy handheld massager over my neck and shoulders in hopes of loosening things up a bit and getting a little relief from the achiness. Once I finished I stood up and immediately started coughing and that oh so dreaded one of a kind, no mistaking it, you know what's about to happen feeling rushed through my body. I raced to the restroom and proceeded to violently cough, choke, gag and vomit for what must have been half an hour. I was able to expel tons of mucus, some of it hard and clumpy, some of it loose and stringy. Isn't that lovely imagery? :)

Knowing I was not finished with this battle, but desperately needing a break, I got up and took a huge swig of Mucinex syrup and did a nebulizer treatment with 3% saline solution and my Aerobika attached. A friend of mine, who regularly battles with mucus plugs, told me to drink at least eight ounces of water as well in order to allow the Mucinex to work quicker. I was barely able to get the Mucinex down, so the water was very tricky. I took small sips, but got nowhere near eight ounces down.h She told me if that didn't help then increase the saline solution to 7% and gave me the recipe to make it. I also had my mom pound on my back a bit and rub some eucalyptus and CBD oil salve over my back and across my shoulders. The warm, tingly feeling provided by the salve and the light massage did offer a bit of comfort, but the coughing would not subside, so back to bowing before the porcelain throne I went. More and more mucus was expelled. How on earth does the body make so much of this nasty stuff. Just about every time I get a cold I wonder this. Where does it all come from for Pete's sake?

Ready for another break, I got my wedge out and laid on the floor with the highest part of the wedge placed under my hips so that they were higher than my shoulders. This was to allow the mucus to flow towards my head more easily and hopefully become unstuck and come out more easily as well. My mom pounded on my back some more while I laid in the floor. I'm not sure how long she pounded or I laid there, or if it was the Mucinex, but something or all of it worked. That all too familiar feeling of impending doom rushed back through my body. Yet again, I raced to the porcelain throne and repeated the series of coughing, choking, gagging and vomiting until finally a huge clump of I don't know what came out. Relief at last. This battle took over two hours. And. I. Won. This time any way.

I have to tell you, that I feel like I completely jinxed myself and brought this on myself! The day before, when I had met me new pulmonologist for the first time, he said one of the main concerns we'd have going forward was getting mucus up. I responded by saying that so far that had not been much of an issue. My major issue to that point was the gas trapping in my lungs. One day I will learn to keep my mouth shut! :) Oh, he also mentioned that we made need to visit switching me from a CPAP to a BiPAP sooner rather than later. I'm not sure I'm ready for that either, but I know many people who use a BiPAP and prefer it over a CPAP, so it will be fine when we decide to make that change. My main concern would be what to name it. I mean, come on Pappy is perfect for my CPAP! Bippy keeps popping up, but somehow doesn't seem to be as delightful as Pappy! (Aw man, the things that run through my head!!!)

The next day I was extremely sore from the battle, but a massage helped immensely. I do not understand why massage therapy is not more widely accepted as providing real medical benefits. It should be and it should be covered by insurance companies - especially for those of us who have chronic illnesses. But that's neither here nor there right now. What is important for this post is the fact that this was my first battle with a mucus plug. Why is it so important? It signifies yet another progression of my TBM; one that I am not ready for. Not in any way, shape, or form am I ready to have to fight this particular fight that comes with TBM. I've known since the day I was diagnosed and went home to devour every bit of information that I could find, and there was not a lot, that one of the main complications of advanced TBM is not being able to get up mucus, causing it to plug up or clog the airways. Not fun. . . . Most of the TBM warriors (that's what we are called) deal with mucus plugs regularly. Up until this point, I had not had the pleasure.

While I was in the middle of this battle I became more than a little despondent. Let me tell you crying when you're violently coughing only makes the coughing and shortness of breath that much worse. I couldn't help it, though. In that moment complete despair consumed me. I felt the full weight of TBM closing in on me and then some. I didn't want this to be happening to me. I did not want to have to go through this, to feel my body struggling with everything it had to rid itself of all of the excessive matter invading it. I didn't want to do this -period. Normally a fairly upbeat and positive human, I hate despair and the unwelcome feelings of hopelessness it brings. I hate that I gave in to it, if even for only a few minutes. I hate even more, though, what TBM has done to me and continues to do. On the flip side, I cannot live a life of despair. There's just too many beautiful, wonderful, lovely things to live for and I refuse to let this thing beat the life out of me.

I only gave into the tears for a few minute before shaking them off and getting on with the work needing to be done in order to win this battle. I didn't have any extra energy to devote to feeling despondent, because despondency in and of itself is exhausting. Once the battle was won I was beyond drained. I felt such relief that the invader was gone and my breathing had returned to normal. I felt relief that the violent coughs that wracked every inch of my body had subsided. I just felt relief and then fell into the deep slumber that follows a day full of physical activity; only my activity was for only two hours. Since that fateful first, I have not let myself dwell on what it means for my body and the future battles to come. I am fully aware cognitively about what is to come, about what is happening inside my body. However, emotionally I'm not sure I'm there yet. Never fear, though, I will get there and I will conquer the despondency if (well when) it arises again. I will be ready for it the next time it rears it ugly head. I was so caught off guard by this battle that I had no time to prepare myself mentally for it. Before I knew what was happening my body was in full fight mode, fighting for every breath it needed to live. My mind was reeling. I won't be caught off guard like that again, though. I will be as ready as I can be for something like that and I will battle with everything I have to get through it. I have a crazy beautiful life and so much to live for that TBM, and all the battles it brings with it, will not win. And perhaps for the first time I will tell you that I am one damn strong woman - all TBM warriors are - and I'm worth fighting for. I will win. I will survive and then some.

This has been a heck of a year for fists in so many different ways. I wonder what the next three months will bring? As always thank you for sharing in my journey to grace-filled breath. I appreciate each and everyone of you. Blessings of grace, mercy, and love to you all.

Shonna