Hangin' Around

Shonna L. Tropf
Feb 23, 2018
15 min read

Hello there Blogland. Since my last post a week or so ago a few things in my world have changed - some good, some not so much, but all for the betterment of my health. I may or may not have mentioned in my last post that I had been struggling with one viral infection after another since October, six weeks after my big remodel to be exact.

Let's quickly recap for you all the ailments that have invaded my life since then. I had a sinus infection that dropped into my chest that I never really got over. I was lucky enough to get the full-on flu, not once, but twice. I lost most of December and January to the flu. February started out on a fairly good note and I had hoped that perhaps I was turning the corner and finally moving downhill on this uphill health battle I've found myself in. But then BAMMO, out of nowhere I contracted the RSV virus. I didn't think there could be a virus any worse than the flu. I. Was. Wrong. But more on that later.

You may be asking yourself, how can all of this be happening to her? Believe me, I've asked myself and my medical team that exact same question at least a thousand times. Each virus would last for weeks on end; literally weeks, I'm not speaking hyperboles here. I would force myself to get right back up and head right back to work way before I ever should have. I wanted to be back at work and healthy, so badly that I'd force it. Keep in mind this is all coming fro me. There was absolutely no pressure for me to return to work before I felt ready to. As you've probably picked up on in previous posts, I push and push myself until I eventually break. By forcing myself to go back to work without fully receiving , I left my body vulnerable and the door wide open for another virus to move right on in. With each successive virus my body grew more and more weak and more and more sick. This latest virus became my breaking point.

There weeks ago, on a Monday evening, I noticed I was getting a soar throat, but didn't think too much of it. By Tuesday evening my throat was on fire. I've never had strep throat, and yes I'm knocking on every wooden surface I can find right about now, but thought surely it can't hurt any worse than this. I kept looking in the mirror for those ominous white puss pockets, but never saw any. On an aside, as much as I've been through and lived through, I freely admit that I am a BIG baby when it comes to soar throats. I HATE them! So perhaps my throat wasn't quite as soar as it felt like to me, but it hurt to me and that's all that mattered. Wednesday I woke up completely congested and feeling just a little cruddy. I was sure it was just a cold. It was my long weekend, so I knew I had plenty of time to relax and try to get past it before going back to work on Saturday.

Saturday morning came and my body had completely different plans - completely. As soon as my feet hit the floor I knew exactly what was coming. I immediately raced to the restroom and proceeded to cough and vomit and cough and vomit for over an hour. I my boss and told him I didn't think I 'd be in today and that I was going to head to the urgent care as soon as the opened. I called my parents to tell them how badly I felt and to let them know I was heading to urgent care. By the time I got there I had started running a fever and continued to cough and cough and cough. I only had to grab the vomit bag a couple of time during the three hours I was there. They ruled out round three of the flu, thank goodness, and then started trying to rule out other viral infections and took some chest exrays. The doctor was very kind and empathetic and was doing her best to find a way to make me feel better. She mentioned the RSV virus and ran a test for it. The test takes a long time to run, so they sent me home and said they'd call me when it came back. I spent the rest of the weekend in bed with my eyes closed. I did not want any noise or even much light around me. I was freezing. I just wanted to stay curled up under my blanks with my electric blanket and flannel pjs on, so that's exactly what I did.

The urgent care didn't call, but that's OK. On Monday I want to National Jewish and was put through a whole battery of tests yet again. I mentioned they RSV test so NJH ran one too. Jackpot! We had a culprit. I had respiratory syncytial virus, also know as RSV. I was told it's not all that common in adults and behaves like a common cold, but it could make me very sick. I was told, again, that's it's just a virus and there's really not anything that they can do for it. I'd just have to go home, rest, and wait it out. I would also need to do continue to do breathing treatments 2-4 times a day, take Mucinex, take cough syrup with codeine, do sinus rinses several times a day, use my oxygen as needed, and so on. I was told that if I got any worse to go to the ER, just like they always tell me to.

Tuesday was worse. My fever had broken, but that was it. By Tuesday evening I had become so weak that I could barely stand on my own and walking a straight line was more than challenging - too bad there was no wine involved to be blamed for my unsteadiness! My head felt like it was going to split in two. So much so that I broke out some Oxy and you all know how I feel about that! I called the nurse at Dr. Hammond's, my pulmonologist, office and she said I should go to the ER. Maurie, my former roommate and dear friend, came to take me because I could not drive myself.

I wish I could say it was a good ER experience . . . . Let that soak in for a minute. You all know I've had some less than, um how to say this? To be blunt I've had some rather horrific experiences with ER doctors - both when dealing with mold toxicity and now with TBM. This visit was no better. Maurie and I debated about where to go and decided upon my "favorite" ER because they've always been kind and compassionate and I'd never had a bad experience there. There's a first time for everything. The visit started out fine, but quickly wen downhill as soon as my lab results came back, revealing that on paper I was healthier than the ER doc who declared in a very self-ritiuous manner, " and I'm very healthy." he then proceeded to threw the lab results on my bed and race out the door.

The nurse came back in with my discharge papers. Maurie and I both were a bit incredulous. The good doctor had not even gone over my chest X-rays. Had only said I had a virus and more or less had no business being in the ER. We asked to see the doctor again because we had a few questions- like just how sick does one person have to be in order to be admitted or how long do they have to be sick before taken seriously. The good doc was already agitated that we dared to question him and again just repeated that I just had a virus and had no reason to come there and to just go home and rest because this was basically a common cold. Maurie then told him to look at me, I obviously was much sicker than what a cold would cause.

We both said I had been desaturating down as low as 85 and no one even came in to put an oxygen line on me, which we pointed out to the nurse. When we questioned that we were told, "when it's taking a reading you're level and that's what we look at." Umm, WTH? Believe me I've been dealing with respiratory issues for A LONG TIME and that was one of the single most ignorant sentences I've ever heard. Once that little alarm goes off, someone is in the room with me oxygenating me, even if it's just precautionary. I've never really been allowed to drop even below 89% with out oxygen being provided. According to Maurie, my lips were taking on a blue hue. The good doc said he didn't know what we wanted him to do and stormed out of the room saying he'd call my GP if I wanted him to.

That fine specimen of a doctor never returned to my room. He, instead, sent a female doctor in - I guess to handle the irrational women or something as insulting as that. We asked all of the same questions of her, with me now in full on frustrated mode, crying and grasping for air. She was very kind, but basically repeated the same thing as "The Man." The only thing different that she offered was to suggest that I was depressed. Nothing offends me more than medical personnel suggesting that my ailments are from depression rather than from actually being sick - which I am. Male or female I want to throttle them equally when they suggest that! I freely admit that I have suffered from depression during my life and that I am now taking medication to control it. I also freely admit that I have had my fair share of moments during the last few months while I've been too sick to work or live my life. I have no issue with depression. I have great issues, however, with medical personnel relying so heavily on that particular diagnosis because they are too uninformed about other, rare, conditions to make an accurate and meaningful diagnosis.

She then repeated that there was nothing to do but for me to go home and wait it out and contact my pulmonologist first thing in the morning and walked out of the room. When the nurse came back in he mentioned that "The Man" had left me quite a long note on my discharge papers. "The Man" had ever so kindly written me a very passive aggressive note as to what emergent care was and was not. Not. Even. Kidding! I can post it for you is you wish. I will be writing my own letter to the UC Health organization and I assure you it will not be passive in any way!

We left. I called. Told the same thing - even to go back to the ER if I got worse (Seriously folks, seriously!!). I followed orders - yet again. I stayed in bed because I could not keep my eyes open and could barely hold my head up.

My fever had dissipated and the vomiting had ceased, for which I was grateful. I had shared with my fellow TBMers what was happening to me. Thankfully several of them had experienced the exact same things and offered advice and encouragement. They all said that they had similar experiences in the ER, maybe not the passive aggressiveness of "The Man," but total misunderstanding of how TBM can turn a simple virus into something far more serious and dangerous to one who is inflicted with this insidious disease. The all said that eventually they had to be hospitalized because they could not get over it on their own.

All was stable until Saturday. As the day progressed I spiked a fever. Even after taking Tylenol the fever kept inching up. I called the NJH on-call nurse. She told me to be very aggressive with breathing treatments and to rotate Tylenol and Ibuprofen. I did that and my fever kept rising. Once it reached 101.5 I called the nurse again. She said based on how I sounded with labored breathing and and a rising fever even after taking Tylenol I had no choice but to go to the ER. I told her how I'd been treated on Tuesday, that I knew what they were going to say and that I really didn't want to go. She insisted, so I went.

Even though the medical staff at this ER was such more compassionate the result was the same. They did run a full battery of test, including chest X-ray and CT, which I mentioned that I had scheduled for the upcoming Thursday at NJH. Everything came back normal looking and still pointing at RSV as the culprit. My TBM buddy Julie, who had been on this merry go round before, kept messaging me to make sure I was doing well and coaching me on what to ask and say. Her story was that she'd gone through a doctor's visit and three ER visits before finally being admitted for her RSV, which ended up being a several week stay. I've had an urgent care visit, doctor's visit, and 2 ER visits. . .

She finally told me to tell them I did not feel safe going home and they wouldn't have a choice but to keep me. How ludicrous is that? The doctors have a patient who was so weak she could barely stand up on her own, who was having issues breathing even at rest, had been spiking a fever and all they cared about were the numbers and the data of what the test results were showing. When did we stop being humans to ER doctors? When did they stop looking at us as actual people and only be able to treat us based on numbers? My mistake, aside from going to the ER thinking maybe this time they would help me, was that I did a double breathing treatment and took a handful of ibuprofen before heading to the ER, which leveled out my breathing and broke my fever. Perhaps I should have just left it alone and maybe that would have spurred them to do something for me. The merry go round continues to go round and round, faster and faster and I cannot find a way to jump off.

I told the doctor that everyone with TBM who ended up with RSV eventually found themselves admitted to the hospital. He didn't understand why and wanted to know how they were treated. When I first arrived I had told him to call the on-call nurse, who specifically said for them to call if they had any question as to why she sent me there. I remind him that he could call her and he actually did. Since my vitals were all good she agreed to send me home and for me to follow up with Dr. Hammond on Monday. Does this sound the least bit familiar? That dang merry go round!

The nurse came in to discharge me and without any prompting from me asked if I felt safe going home. Keep in mind it was already after 11:00 pm, I was crying once again due to frustration, and complete exhausted. Merry go rounds were supposed to be fun. This one was not. This one leaves me feeling drained and dehumanized. The nurse said that if I did not feel safe at home they had an observation unit and they could keep me over night. She would have to talk to the doctor, but she was sure they'd keep me as long as I told her I was did not feel safe going home. By then I was so frustrated that all I wanted to do was go home. She said that if I got better to come back. Nope! I don't think so.

So the story and merry go round continues. I called NJH and was told to rest and that RSV could linger for weeks. WTH? I've been home and have spent the week in bed or on the sofa. I've been nursing a fever and one of the most horrific, continuous headaches I've ever had, doing breathing treatments, and taking Mucinex - I should really invest in pharmaceutical stocks. For most of the week I've stayed steady with little to no improvement. My fever broke yesterday, but is back today. It hovers right at 100, give or take a few tenths of a degree. I've read that you should just let it go if it's not too bothersome because that's the body's way of fighting an infection. Evidently my body is working double time to fight this thing! I do have to take Tylenol or Excedrin to keep the headache at bay as much as possible, although they really don't help too much. Walking around the house is exhausting, but I'm trying to do more of it. I may even venture out this afternoon and take Lani for a walk - she really needs it!

Now for the changes that have taken place this week. As you all know I have an amazing boss and love my job at Woodley's. However, since the big remodel I've missed more than I've worked due to illness. With each successive virus my body had grown more and more weak, to the point I alluded to above of barely being able to hold my head up or simply walk around the house. (Doing laundry has been a bear, but I've done it because it had to be done! A girl does need clean pjs and undies after all!) I've kept my boss abreast of everything going on with my health. I did not see any reason to try to hide it from him; I do not have a poker face so I wouldn't be able to hide anything from him anyway.

Over the last few weeks as I grew weaker, I had been mulling over the idea of needing more time to heal. I had wondered if there was a possibility of being laid off for a bit and being able to draw unemployment so that I would have some income coming in while I recovered. On Monday when the doctor said this could linger for weeks I knew something had to give. I would rush myself and go back to work when I truly had no business being there. I forced the issue and now I'm broken. I called Tim and reviewed everything that I had been told and was doing. I'm trying so hard to heal, to get back to work, to get back to life and nothing is working so far. He was so concerned for my health and almost as frustrated as I was that the hospitals would not admit me; even it were just to keep an eye on me while I slept!

So to the point, I've now lost my job. . .

Don't panic - I'm not! I'm actually more at peace than I've been in quite some time. My body is just broken and forcing myself to get back to a job that, even though I loved it, was quite draining. I worked with the public - lots and lots of people. Some of them most likely contagious and didn't even know it. Their germs invading my space and inevitably my body. Even though I wore a face mask on especially busy days, I was not safe from the germs. My body has degraded to the point where it cannot ward off these pesky germs and viruses. Time and rest are the only things that are going to help. My doctor's note excusing me from work said I could not return until I was fully recovered. The on call nurse said with RSV I should not return to work until I'm asymptomatic as it was not fair to me or to the people around me. Time and rest are all that's going to help. I have finally come to that understanding and have accepted it.

The peace of mind I feel now is irrational, I mean I don't have a job! Nonetheless, it's there and it's welcomed. Not only will this time allow me to heal my body and mind, my hope is that it allows me to explore some things that have been on my heart and mind for quite some time. I know this is God working on me. I've known all along that there is a purpose for my suffering, that I can do good with it. I can turn my pain into knowledge, understanding, and hopefully healing for others who have been afflicted with TBM or even any other ailments that are are uncommon or misunderstood.

With the merry go round of traditional healthcare having become too much to deal with, I did seek out a naturopathic/holistic healer this week. By no means am I abandoning my medical team, but we are missing something and I need healing in every aspect of my life. Being so sick for so long is taking a tole on me, breaking my spirit bit by bit. However, to be honest, I've felt so bad the last few weeks that I have not been able to consider my spirit or my emotional well-being. I'm just trying to get through the day; minute by minute. I pray for just enough grace for the moment.

I believe that she will help me get that life I'm missing back. We are going to work on getting my first chakra, my immune system, unblocked. She said that everything I'm experiencing is all connected and that once we get that part healed then other things well begin to fall into place. I'm not going to go into great detail about what we are trying yet, especially since we just started and I'm not so sure myself what all we will be doing. This is something entirely new to me so I'm just going to go with it and see where it takes me. I will tell you, though, that she too said I needed time to rest. She said it was a positive thing for me to have time off and that especially during the next few days I needed to do nothing but rest. She said I could do things like sew, work on crafts, write, read, whatever was low key and brought me joy; but to rest. The best part is she said not to worry about cleaning my house or cooking or things like that! :) My hopes are that she helps me get off that merry go round and find my way to back to life.

For the time being I'll just be hanging' around - just like the clouds in this beautiful, big, blue Colorado sky. Feel free to call, or even better, drop by for a visit. Well enough for today (well, it actually took two days to write this!). I am pretty wiped out and think I'll head back to bed to take a much needed nap. As usual, thank you for taking the time to read my blog and joining me in my journey back to health and living. Love and blessings to you all.