Just Enough Grace

https://www.gofundme.com/shonnastbmremodel

Update #7 August 31, 2017

Today is the original date for the big remodel to happen, but as you all know due to a family emergency for my surgeon it’s now next Thursday, 9/7. Pushing the procedure back has given me a little more time to process what is about to happen to my body and how it’s impacted my emotions. I’ve actually been reflecting on all of my emotions, the highs and lows, times of joy and times of complete bleakness, I’ve experienced over the last five years, but all of that is a ton to tackle. Way more than I can put into a blog post, so I’ll save that for another project I am working on. Today I will focus on how the diagnosis of tracheobronchomalacia impacted me and how I’m feeling leading up to the big remodel. I am going to lay it all out there and reveal my innermost thoughts and feelings to you all. It should be pretty cathartic for sure. I have a box of tissues right beside me!

Last spring and summer I had actually been feeling pretty good for the most part. I had days where I felt great and could almost put the damage the exposure to toxic mold did to me. I was able to be pretty active and was out hiking or being out and about running errands, or cook a week’s worth of meals lickity split on most of my days off. Then out of nowhere I’d have a respiratory flair up that would last for days; or maybe even weeks in some cases. However, there did seem to be a larger amount of time in between those flair ups, even if they were still pretty intense in nature and would take a lot out of me. The big turn came in on October 21 when I got a horribly sick with what was originally diagnosed with pneumonia, but it wasn’t. This exasperation lasted a couple of weeks, with my breathing being more shallow than it had been since in the middle of the throws of the mold exposure when I more or less could not get out of bed for the better part of four months.

We tend to take the act of breathing for granted until we can’t, or at least I know I did. Considering I’ve had asthma most of my adult life, I should have learned that breathing and being able to get air into your lungs is not something to take for granted by any means. I guess due to the fact that my asthma has always been very well controlled and I only had exasperations a couple times a year, I never really paid much attention to breathing. It was just something that I did; such a vital and natural part of living I didn’t even think about it. Haha, I DO now, though! As I’ve said in previous posts I will never take the act of breathing and the feeling of having a lung full of air for granted again - ever.

The loss of being able to fill my lungs with air was not something I noticed happening either. It happened slowly over time. I did notice that hiking was becoming more and more difficult, if not stressful at times when I would be stubborn and keep moving up the mountain, trying to get past the feelings of my lungs being on fire, the woozy, wobbly, light-headedness overtaking me, and the doubling over hands on my knees coughing and gasping fits. As hiking grew more difficult I would eventually learn to be in tune with my body and stop for breaks so that my lungs could catch up with my determination. That is except for the last hike I took way back in the middle of June – just a few days before my TBM diagnosis. I hiked Crag’s Trail on the north side of Pike’s Peak. About 100 feet into the hike I KNEW it was not a good idea to keep going, but keep going I did. The views were, to quote a wise beyond her years young girl I met on the trail, “glorious.” The views were glorious, but I was struggling too badly to really take them in and go to my happy place of peace and serenity that I normally find when out in nature. Lani didn’t really seem to be able to enjoy the hike either as she was far too concerned about me (so blessed to be her pet parent!). That day I realized my days of hiking were over; at least for the time being. Staying desaturated to between 75-83% for 3.5 hours was is bad, really bad. My pulmonologist thought so too and I got in trouble with her and told to “not ever do that again.” It was a heartbreaking lesson learned . . .

BTW, I have not posted the photos on Facebook yet. I guess I didn’t want to really admit to my foolishness. Now that I’m declaring it here for all of you I will go in and post them soon! Also if we are not friends on FB, friend me because I have TONS of beautiful pictures from my explorations of my glorious state!

When you live with not being able to achieve fully filling your lungs with air and then one day the good folks on your medical team insert a stint into your trachea and for the first time in as long as you can remember you inhale as deeply as you can and then you feel it. You feel your lungs actually expanding with the cool, crisp, life-affirming air that you didn’t even know you had been missing. It was in that moment that I knew I would do whatever, put my body through whatever, it took to be able to have that feeling of expanded and full lungs back in my life for good. Even being in quite a bit of pain, I was so grateful to Dr. Meguid and his team to giving me a glimpse of what it meant to breathe, I mean really, really breathe, again. I can still recall that feeling now as I type this post and cannot wait for it to be given back to me; permanently this time.

Since October, I’ve been in and out of the ER too many times to mention. Each time I had to go to the dreaded ER would wait until I absolutely had no other choice because no matter what I did I could not catch my breath and I would shake almost uncontrollably. In fact, most people would probably have gone to the ER days before I decided to relent to the breathing issues beseeching me and go to get however many number of breathing treatments and rounds of steroids they had to give me until I felt better. I guess over the years I grew used to dealing with those exasperations and am just stubborn enough to think I can get through them on my own; until I can’t.

In October I knew something was different with that exasperation. It totally and completely wiped me out. In all honesty, it really scared me – and I don’t’ get scared with these things. With each new exasperation, they seemed to take more and more out of me and to recover from. The one that lead to the TBM diagnosis was especially bad and even more scary. I woke up that Tuesday morning and immediately knew something was very wrong. I kept telling myself to focus and to relax. I ran through all of my breathing exercises, but they did not help. My body was in serious flight or fright mode and it did not matter that I repeatedly myself I was fine, I was getting oxygen, and to breathe the anxiety was too much to bear. I did go to work that day and lasted only about 30 minutes before realizing I HAD to go to the ER. And no, I was not faking to get out of working my last week at Pier 1 as I've been accused of doing (Uh, those people are not worth discussing - period!!!!!).

The feeling of the anxiety taking over my body is more overwhelming than the lack of being able to catch my breath. Throughout the years I’ve had minor panic attacks here and there (hey it happens when you’re an unaware type A/perfectionist person), but nothing like what this anxiety felt like. Sometimes in those moments bitterness floats through my mind and across my heart. I don’t understand why all of this is happening to me, what lessons I’m supposed to take away from it, how am I supposed to use this in my life? What did I do to deserve this to be happening me? During these attacks such thoughts and feelings were fleeting, but they were present and they were real and they broke my heart.

For the most part, I have been positive about what was happening to me and kept moving forward in order to get better. You may have picked up that I’m stubborn or determined like that! For the last four and a half years I refused to let the mold exposure defeat me, even when I was at my sickest. I even upended my entire life to move across the country so that I could get better. Fortunately, I just happen to fall in love with my new home and am very happy here, largely in part because I do feel better most of the time – or at least I had been. It’s also fortunate that I love living here because every time I go back to Missouri, which I truly love, to visit the people I love most in this world, I get sick. It’s very frustrating that if I’m at home for more than a couple of days, especially if there is any kind of a mold count – and there usually is, I begin to feel the familiar muscle aches in my shoulders that creeps up into my neck and eventually takes over my head, ending up in a ferocious headache. After the headache begins, it doesn’t take too long for the aches to drop down into my chest and that’s all she wrote. For lack of a better way to put in to perspective; it sucks!

People have often asked me how I’ve managed to keep my sanity, how I’ve managed to keep such a positive attitude, how I’ve managed to keep my smile intact, or how did I managed everything that life has thrown at me over that last few years period. (There’s way more to my story than simply mold exposure syndrome and TBM, but I’ll leave that for another project. Let’s just say I’ve been through the ringer more than once . . . ) My main response to their questions is what other choice do I have. I’m not one to curl up and wither away, although at times it would have been far easier than all of the struggling. I am a goal-oriented person, who rarely fails, and set recovering my health and full life my goal. I am a fiercely independent woman and having to rely on help from so many people, while I’m eternally grateful for everything anyone has done to make it possible for me to survive, I was motivated to be able to stand on my own two feet as soon as possible. I’ll reach those goal one day soon. I am a strong, headstrong woman after all. I also have a very deep faith in God, and know He is with me even on days I don’t necessarily feel Him or don’t understand the why behind this very long chapter of my life. Oh, and I had a really good therapist before moving to Colorado!

For all of the positivity and determination that I exude, there have been, and still are, days that I cannot find the energy to be positive. There are days that I do feel defeated and just mentally drained, not sure where I will find the strength to keep fighting this seemingly never ending fight. There are days when I’m mad as hell and want to scream at the top of my lungs to release all of the pent up pain, suffering, frustrations, hopelessness, helplessness, desperation, and utter sadness that I’ve dealt with over the last several years; to free myself from the hell I’ve been in for so long. There are days that are darker than dark and no rays of hope or positivity can penetrate its deep murkiness enveloping me.

There are days that I’m just sad. Sad for my lost health. Sad for this body that can no longer do the things that used to be so easy for it. Sad for the lost energy that propelled me to be able to go non-stop for hours or days on end when needed; today I’m lucky to make it through an eight hour day at work; I’m completely wiped out by the time I get home and fight to stay awake until 8:00/8:30 – I don’t get home until around 7:30 (Yepper, it’s that bad.). Sad for my lost income and savings. Sad for my lost independence. Sad because my body (especially my head) hurt so badly all I can do is go to bed and sometimes that doesn’t even help. (There were days I don’t remember at all because my head hurt so badly. In another project I’ll explain what was going on inside my body/head to make it so painful.) Sad for my lost mental capacity (especially my memory). Sad for my lost possessions (I had to get rid of a TON of stuff from the mold and then even more when I moved to CO, but it really is just stuff.) Sad for my lost life.

On those days I cannot stop the tears from flowing. On those days there seems to be an endless supply of liquid in my body. Sometimes find myself curled up in a tight ball on the floor begging God to make it stop because I seriously cannot take anything else; not one more thing. I don’t always curl up in a ball on the floor. Sometimes I crawl into bed and pull the covers over my head and cry into my pillow. Sometimes I curl up in a super hot bath and let the tears flow. Sometimes I cry in my car.

But I very rarely cry in front of others; let them see my pain as I cannot stand to hear people say they are “sorry” or desperately try to “fix” it. I know they truly are trying to help, but it doesn’t. For one, they didn’t cause any of this to happen to me. I made the decision to try to make my life better by purchasing my little shop of horrors. I did that, but the sick building did this to me. Next, sometimes I just need to cry; it’s a release and is completely normal. Lastly, there’s no quick “fix” for any of this. To be perfectly honest, this sucks in all of the ways one would imagine it sucks, it’s completely draining in all areas that can be drained. Somedays it’s pure hell; simple as that. I’m doing the best I can with what life has handed me. If I do say so myself, I’m handling all of this with more grace and dignity than what most people would be able to do.

When I first got sick I did try to stop the tears, but no longer. My therapist told me I needed to experience all of the emotions that comes with something like this. I was dealing with a lot and experiencing a lot and to hold all of that in was bad news. She said if I needed to cry then cry, if I needed to be mad be mad, if I needed to be sad be sad. Let myself feel. She then added that letting myself experience my full emotions did not mean living there. She said to let myself take those moments, those days, but then to let them go and to not live in those places. That’s probably been the single best piece of advice I’ve been given – maybe ever. She provided a safe place and gave me permission to feel everything that I was experiencing and to not feel guilty about whatever it was I felt on any given day. I now let myself fully feel every emotion that comes along. I find ways to get through them and then I get back to living this life as best I can.

In know I my heart that God had a greater plan for me and that slowly he is revealing to me what I need to do to help others. He is slowly opening the doors I need opened in order to put His plan into motion. I know He is with me and providing me with just enough grace to get through this whole in spirit, whole in faith, whole in heart, and whole in health. Thank you for taking the time to read this and share in my journey life, spirit, and faith. I pray for blessing for you and for you to be provided just enough grace to get through whatever it is that you are facing in your own lives.

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