And Still I Fight . . . .

Fighting. For the last six years fighting seems to be all I have done. Fighting to keep my lovely little shop open through some very difficult financial times on Historic Main Street in St. Charles, MO. Fighting to starve the mold spores out of every last inch of my body. Fighting to make my brain function as highly as it had before those nasty, poisonous little spores so rudely invaded it and took away it's capacity for remembering anything or thinking critically. Fighting to simply breathe; somedays fighting for every single breath I took. Fighting to regain a life - of some sorts any way - that was so devastatingly snatched from me. . not once, but twice.

I am strong a woman. Always have been. When things around me fall apart, I step up, pulling strength from only God knows where (probably from Him!), muster forward and get through it. I fight. That's what I do. It's the only thing I know to do. It seems like all I have done since black mold, and later TBM, entered my life is fight. But at this very moment, as I write this blog I have to admit, I'm pretty damned tired of fighting. . . .

I thought that after having my big remodel in September of 2017 that I would get some much needed relief from my ongoing health battles. Eh, turns out I was wrong, and have been fighting infection upon infection upon infection for the last 17 months. This past fall I started experiencing what I felt were TBM like symptoms, which I wrote about in my previous post. I started inquiring about follow up and did not get anywhere until January 2019. It is then that I met with Dr. Meguid, my cardio thoracic surgeon, and we put together a plan. First I was to have a dynamic CT scan with a cross sectional view. Following that I would have a bronchoscopy (see my previous post for more detail about that procedure).

When the CT was finished I asked the tech if she had seen any collapse and she said yes but it wasn't that bad, and then offered to show the scan to me. As it turns out the CT revealed well over 80% recollapse. "Aw damn," were my exact words when I saw my trachea seriously collapsing over and over as I exhaled. Man oh man, that was certainly NOT what I had expected to see and my heart nose dived right down to the cold hard cement floor. The very kind technician tried her best to put a positive spin on what I was looking at by saying "At least it's not full collapse, so it's not so bad." Poor thing. I'm not sure she had any idea what TBM entails or what one had to deal with when one's trachea and bronchi stems look like the ones screen look like. Too bad those were mine.

I will be completely honest with you and put it all out there - see the CT scan and the recollapse revealed by it sent me in a bit of a downward spiral for the next four days. I was devastated. My mind just could not comprehend what I had seen and what that meant for my future; for the plans I had been preparing for when I finally got past all of the successive infections and finally felt well enough to get back to work. I was/am so eager to get back to work and to a full life again. What I saw on that screen meant that my thousands and thousands of prayers were not going to be answered and that this hell I'd found myself in since October of 2016 when TBM walked into my body and took over my ability to breathe was going to be my living hell. The TBM would continue it's destruction and breathing would become harder and harder as the weeks, months and years past. Ridding myself of the thick, tacky mucus it had already begun producing would be harder and harder; and some days downright impossible. I would add more and more breathing apparatus to not only force open my air ways, but to help shake loose the mucus so that I could get it up and out with little to no dignity. I only saw darkness in the future that I had been fighting so hard to make bright with the light of hope. In that moment there was no more fight; TBM was winning by a mile.

I felt the weight of this darkness for nearly four days. My CT was in the morning on a Thursday and I honestly don't remember much about the rest of that day. I know that I somehow managed to drive myself home from downtown Denver with no problems. The day following my CT scan, a Friday, all I could do was sleep. I think I slept close to 23 hours that day. It was the sleep of someone battle wearied from fighting so hard in vain; the sleep of someone who life had defeated in that moment. There was no shaking it that day no matter how hard I tried or told myself I had things to do, to wake up and get going. My brain and my body were completely void of any level of function with sleep being the only thing they craved. That next deay was a bit better and while I slept quite a bit, it was not so all encompassing as the previous days darkness. I was actually able to do some mindless things around my house. I even started working on a new video as a way of distracting myself. (NOTE: It's the first video project I've even attempted to do since 2012 when I left UCM and video production behind! Oh, and yes, it turned out pretty darn good. . . )

Germany come to me_edited

Germany Cologne_edited

Germany cathedral inside

As most of you know by now I do allow myself to feel every feeling that comes with being chronically ill. To be honest, it took a lot of therapy to get me to this place of emotions acceptance and it's honestly one of the best things to come out of all those therapy sessions that I carry with me to this day. I feel very strongly that feeling everything that comes with any situation you find yourself in, especially a chronic illness, is a must in order to cope with and accept what is happening to you. I tend to feel those feelings, especially the hurt/loss, so very deeply. I just do not allow myself to dwell in the sadness and hurt very long as that's when it becomes unhealthy. If you are prone to hiding away and from your feelings, then I would whole heartedly suggest you find a very good therapist and find away to allow yourself to feel them to the core of your being. I promise you won't regret it!

Sunday came and brought with it a fantastic day and a fresh perspective from me. I woke

up and told myself that enough was enough. God had also decided that enough was enough. As I was getting ready for church and giving myself a good ol' pep talk, I glanced down at my phone, which was opened to Facebook, and saw a new post from a friend of mine. It was of one of the most magnificent "sunrises" (It was actually a sunset, but at first glance I thought it was a sunrise!) I had ever seen. The image made me pause and remember that God promised glory in each new day and this day was no different. I tucked this into my heart and couldn't help but smile a little as I made my way to church.

Indeed there was glory in this new day. The Colorado sky was it's usual captivating hue of blue with just a few wispy clouds floating about. The air was warm, with just a hint of a chill in the light breeze - just the way I like it. The sun was warm on my face as I soaked it all in. There was glory in this new day - just as God had promised and He was not finished reminding me of that. Just take a wild guess what the sermon was about . . . Right on!

The name of the sermon was, "A Glimpse of a new World," based on Luke 4:14-21. Rev. Kent started off by saying good news all depends on where you're sitting and your perspective. Jesus' sermon in this passage offered a glimpse at a new life as it could be, but none had seen yet. "Are you dealing with devastation or a set-back?" (I'm not kidding, he asked this question - right there in real life, right up on the pulpit!) Rev. Kent went on to say that life was about one's perspective in any given situation and knowing that God holds us through anything and everything that we go through. All we need to do is just hang on because He promises glory in each and every new day that we are given. All we have to do is seize this glory by remembering that we are all children of God who loves us unconditionally. Sometimes I need to be bonked over the head for things to sink in. I got it God . . . and thank you.

So the next few weeks went by and I did my very best to not think too much about what may or may not be going on in my airways. Some days were easier than others, but that's just how it goes. My mom came out for the bronch, which I completely appreciated. She came to support me, but also because deep down my family and I were truly worried about what the scope may reveal. We were all on edge in our own ways I guess. I had teams of people praying for me all over the place and I could not appreciate those prayers more! My aunt and uncle had their church anoint a cloth with oil and pray over it for me. I received it in the mail and I could feel the outpouring of the Holy Spirit in that small piece of cloth, which I carried with me to the hospital.

The day for my bronchoscopy finally arrived; it was the Friday before my birthday. Dr. Meguid was actually very concerned about what he saw on the CT as he's never had a TBP fail, nor had any of his other colleagues at UCH. This is quite a feat considering they do more TBPs than any other facility in the country - Boston runs second. We got very good news from that bronch. While it did reveal some collapsing, it was nothing compared to what my CT scan had showed. It was a relief all the way around for sure! However,

because I am still TBM symptomatic he wants to keep a close eye on me for the next few months while I'm going through all of the preparations for the surgery to fix my reflux, which will hopefully happen by the end of April or first part of May. After that he will do another bronchoscopy to take a second look and make sure that what collapsing there is has not increased and that the mesh/stitching is still holding and looks as good as it did that day. We were all so very relieved and incredibly thankful for all of the prayers. God is so good!

Additionally, Dr. Meguid referred me to a rheumatologist. With still being so symptomatic and having symptoms that are kind of odd and not seemingly related to TBM he wanted to see if in addition to the TBM and GERD if there may be any autoimmune disease type things going on with me. He's still pretty concerned about how sick I've been and get so frequently - me too for that matter (it's no way to live) . . . So off to the rheumatologist I went!

I met Dr. Tho Truong on Friday March 8. As with most of my doctors at National Jewish, I really liked her right off the bat. She was full of information - TONS of information, which as you know I love. First she said that I did not exhibit any of the symptoms associated with the traditional autoimmune diseases associated with TBM, yay me! Then she was off and running. She took her time to explain what exactly they would be looking for when investigating for autoimmune diseases and the different tests she would like to preform and why. There is a tissue sample from my airways/lungs she'd like to do, but since I just had a bronch she would wait until after my upcoming reflux surgery.

We then addressed why I may be shaking, many times to the point of trembling, so often and that my hands give out and I drop things - a lot. She did not hesitate to say it's all of the steroids I'm taking; I'm taking a lot of them. Well that was easy enough! She said that even though the steroids I take are directed at my airways, but some escape and are definitely in my system and one of the main side effects, along with weight gain, is shaking. We discussed the fact that I did not feel any significant difference as each new steroid was added into my long, long medication list. She suggested that I come off at least one, but that I discuss it with my pulmonologist before doing so. I'm all for that and will be discussing this with my pulmonologist the next time I see him.

Here's the kicker - and what we spent the majority of our visit discussing. My TBM recollapse. Yep, recollapse. One of the first things she brought up was that blasted CT scan. Even though I'd had the bronchoscopy that did not show nearly as much collapse as the CT, she said that CT did not lie. That I do indeed have significant recollapse going on; no question about it. She went on to say, very excitedly I might add, that my CT was one of the most definitive signs of recollapse she'd seen, maybe ever. "It was spectacular!" She didn't need to be quite that thrilled about my collapsing airways, but in an odd way it made feel a little better. You don't get that excited about something you don't care about. I, once again, know I am in good hands.

Dr. Troung touched on the thing that had been bothering me since my bronch. Why was

there such a disparity between the CT scan and the bronch. I asked her the one question that I had yet to get to Dr. Meguid. TBM is intermittent, meaning that some times there's quite a bit of collapse and others not so much, until it becomes so bad that the airways just stay collapsed. So I asked her if recollapse can be intermittent as well. She said, "Excellent question. And yes, absolutely." So, there ya go. She just confirmed exactly what my mind and gut, and airways had already been telling me. This time, however, I was prepared for it and did not fall to pieces. I was prepared to fight yet again.

She did order a multitude of tests in order to start screening for autoimmune diseases as well as to revisit some of the other tests I had when I first began being treated at National Jewish. She thought there would definitely be some differences in the results from then to now and those test results may be helpful in securing disability (That's another story I'll save for another time! But she did say she thought that was where my health was taking me and it was a good idea to get started on the process, which I've already done.) There are more tests on tap that both doctors want to do, but both prefer to wait until after the Rowen Y Gastric Bypass, which I am more than ready to get out of the way. I'm now waiting on insurance approval and then will get it scheduled.

With my GERD, I'm at the point where it's day by day as to how I feel and what I'm able to do. I'm still getting respiratory infections and a whole host of other symptoms from aspirating A LOT - a direct quote from my dietician. Last week I went to the final nutritional seminar before my surgery that dealt with post operative care and diet. The information provided and chatting with others who have either had the surgery or were about to have it as well made me feel a lot better about the whole thing. Nonetheless, I am little apprehensive about it as anyone would be. I do know that this is the thing that needs to be done in order to fix the reflux and get me on a path some semblance of a better quality of life, so that makes all of the changes and transformations that I'm about to endure all OK.

So my friends, that was a lot of information for you all to take in. For me too, to be honest. I know I've been pretty quiet lately and there are a variety of reasons for that. I've taken some time "off" from thinking about where my life has taken me and from the insidious disease that I somehow managed to find along the way. I"m still processing the full nature of the recollapse and am thankful that I have not had another significant recollapse episode in a few weeks. This mental down time has allowed me to get my fight back on! I, after all, have no other choice; the world keeps going no matter what is happening to me and I want to be part of it! So, still I fight . . . .

I will, as always, keep you posted as I get closer to the surgery. Thank you so much for taking this ongoing journey with me. There a life coming to me that only God knows what beholds, But in the meantime, there is glory in each new that I get to wake up and especially with each breath I get to take.

Blessings of grace and mercy to you all.

Shonna

German house

Germany house in trees

Germany Mai Day pole

Germany double doors

Germany farm

Germany copper domes

A NOTE ABOUT THE PHOTOS: The photos included in this blog post are from my very first trip to Germany over 10 years ago. I chose to include these architectural photos because the buildings are living breathing entities that have been fighting to survive for hundreds, if not thousands of years. One such building has survived since 1222. These buildings are amazingly beautiful and I hope you find as much joy from them as I did while taking them and while revisiting them this past week to find the right ones to include here.