Four Months Later . . .

Well hello there bloggers. I know way back in February I promised that I would be more consistent with my updates, but then more or less fell off the blogosphere. In my last post I left off with being laid off from my job in order to take some time to heal. I had been diagnosed with RSV and was told it could possibly linger for months. Guess, what? It did. It got SO much worse before even the slightest up tick of improvement, hence the reason for my absence in the blogosphere.

I have many things I want to tell you, things that I've learned over the last few months, my ideas for what my future may look like, and I will get to all that soon, but for this particular post I will just give you a brief update as to where I am with my health today.

Many of you have inquired as to how I'm doing and have offered me prayers and well-wishes over the last few months and I so truly appreciate all of you. During the last few weeks several of you have assumed that I must be doing much better by now because it's been so many months. It would seem that that should be an absolute correct assumption, and I cannot tell you how I wish it were, but the truth is that I've more or less stalled in my recovery and most days do not feel all that great. I've reached a sorta lousy, but forced functioning status. So, let me tell you how I've progressed, or not progressed as the case may be, over the last few months.

The RSV was/is a living hell on earth - I'm not exaggerating! There were days and days when I could not get out of bed, would cough incessantly, was extremely short of breath, and had such a severe headache I could not see straight or hold my eyes open. I ran a low grade fever of 99-101, which I now know is not really considered an actual fever, for months. I had the flu twice over the winter and that was nothing compared to RSV. I was incredibly miserable and weaker than I can ever remember being - even immediately after my big remodel.

When my pulmonologist told me this thing could linger for months, I'm not sure I actually believed her. I mean how could a virus, which has no cure and very little relief providing options available, linger for months? But linger, it has. I saw Dr. Hammond just before Easter and she informed me that from a

pulmonological stand point this was the worst season of RSV that she's ever seen and that it's especially bad for people like me with compromised respiratory systems. After my exam, she must have not liked what she heard, because she added on more inhalers and more steroids for my nebulizer treatments, which I am to do 2-4 times a day - as needed. If you're keeping track, it takes 3 different inhaled corticoid steroid inhalers twice a day and 3 different steroid nebulizer treatments to keep me breathing at even the lowest levels of normal. Any sudden movements, any exertion, any heavy lifting, etc., leaves me short of breath and hacking up a lung. By the way, the abbreviation for short of breath is SOB. How appropriate, because being SOB is truly a really SOB! :)

I ended up in the ER three different times, begging for someone to help me, to be admitted, to get some sort of relief; only to be turned away ever single time. Repeatedly, I was told it was a virus and there was nothing that could be done to help me. To go home and wait it out. One doctor even treated me as though I was drug seeking and said that on paper I was healthier than him and he was very healthy. Did I mention that I could barely stand up, let alone walk a straight line at that point? My friend who took me to the ER was flabbergasted at how he treated me. For me, it certainly wasn't the first time I've been treated that way and all I wanted to do was just wanted to cry some more. The people in my support group could not believe I was not being admitted as most of them who had contracted RSV in the past were indeed admitted to the hospital, some for weeks at a time. I'm not exactly sure what it takes to be admitted to the hospital these days, but none of them in the Springs ever seem to want to take me on or even help me in the least. I believe it comes down to, yet again, an ignorance of what it is to live with TBM. Oi!!!!!

I've had a chronic headache since the beginning of the RSV (let me remind you that was the beginning of February!) I've been seeing a neurologist, but have them stumped as to what's causing it and why it won't go away. At first the doctor was pretty concerned that I might have viral meningitis and actually had me admitted to the hospital! He ordered all kinds of tests, including an MRI. Wouldn't you know it, everything came back normal and nothing they've tried seemed to help. Well, I guess if you count the fact that while I was in the hospital for two days they kept me pretty drugged up, so I slept a lot and didn't notice the headache much while I slept, I guess I did get a little relief! :)

Shots in the nerves at the base of my head didn't work. Migraine meds didn't work. Cluster headache meds didn't work. Muscle relaxers didn't work. Neither has massage. Some days it's not as bad as others, but it's never gone away. I've pretty much gotten used to having it and have learned how to cope with it or just not think about it; until those days I cannot function because it hurst so badly. On those days it refuses to be ignored, taking over my entire being, and forcing everything in my life to come to a complete standstill while I waste the day away in bed. I feel pretty bad for Lani because our daily walks have sort of fallen to weekly walks. She's so good, though, and stays right by my side on those bad days.

On top of the continued breathing issues, I have developed a TON of additional symptoms. Here's just a small sample of said symptoms:

- shakiness - impaired vision - stiff/achy joints - severe headache

- itchy/dry skin - all over achiness/weakness - heat intolerance - chills

- fatigue - tingling sensation in hands and feet - random low-grade fever

And the list goes on. A few weeks ago I had the initial screening for autoimmune diseases and everything came back normal. One test was elevated, but the doctor said that it wasn't enough to cause any concern. So, no answers to be found down that avenue. I did go to respiratory physical therapy and learned some new ways of doing old exercises and yet another concentrated way of breathing to make doing said exercises easier and more manageable. The therapist taught me different things to look for when I'm exercising so as to not over exert myself, but also making sure I'm doing enough to get some benefit from them.

Additionally I went to occupational therapy to learn how to do things around my house without becoming so short of breath. To be honest with you, getting dressed is a bear! So much bending or leaning over and so much shortness of breath and lightheadedness to go along with it. Vacuuming isn't much of a picnic either. I was shown ways to wash, apply lotion, put on clothes without having to bend over, which constricts the diaphragm and lungs making it harder to breathe, so much. Did you know they make long handled lotion applicators? :) Good stuff right there! I was also shown "easier" ways of doing chores and told to just do one thing a day or a every few hours instead of trying to do it all at once. That was a lesson I'd already mastered. I no longer clean my cozy cottage in one fell swoop; it now takes me days. I've actually learned to accept that and be OK with it - me six years ago would not have been so accepting for sure!

On Friday I met with Dr. King, a GI doctor who I really liked. He was very thorough in his analysis and explanation of what he thought was needed. Before having my tracheobronchoplasty Dr. Hammond said she was concerned that my acid reflux would continue to cause me issues. Turns out she was right again! Almost a year ago I had a barium test that showed severe acid reflux, which is considered to be one of the culprits of the ol' TBM. He said that while all indications are that I do have reflux, that we don't have any conclusive tests showing it or how bad it may be.

After explaining that there were two types of reflux, one with acid and one with everything else in stomach, either of which could cause considerable damage to the esophagus and lungs. He described the two tests that needed to be done so that we could conclusively determine that there is reflux and what course of action to take. An Impedance and pH Study will be the first test. This will be a small tube placed down my nose into my stomach that's attached to a monitor. Any time I cough, clear my throat, or feel like I have heartburn, I am to hit a button to record the episode. It also will measure if, what kind, and how much reflux is going on. I will wear that for 24 hours before it's removed and he conducts an Esophagogastroduodenoscopy (Let's just say scope!) to look into my esophagus. These tests will determine if medication alone will help or if I'll need surgical repair. I have them on July 11th & 12th. By the way, if anyone's around and wants to drive me for the scope not he 12th, it would be greatly appreciated!

When I asked Dr. King how many of my symptoms might go away with treatment he was very candid in his response. He does feel as though he can get me feeling better to some extent - provided there's actually reflux (which we both are fairly certain there will be). He warned though, that with all of the stuff I've been dealing with over the last several years, going all the way back to the mold exposure, that there's permanent damage that nothing will fix. The extent of that damage will determine how much better I may become. He also reminded me that TBM is a chronic disease and has caused its own damage, and will continue to do so no matter what course of action we take with the reflux. . .

And that my friends, is the crux of the problem. I don't want there to be any permanent damage. I don't want there to be continuing damage. I don't want there to be continuing deterioration of health. I don't want there to be continuing deterioration of breathing. I don't want to have to live my life feeling like this; a shadow of my former self. I don't want this insidious disease anywhere near me, my body, or my life.

Don't get me wrong. Most days I cope very well with all that's happened to me since the day I set foot in that little

shop of horrors in St. Charles, MO six years ago. I have tidy little compartments for every single thing that's transpired, every illness that's invaded my body, every loss I've endured. Even though I try really hard to keep TBM in it's tiny little compartment, sometimes it just won't be contained and burst out of confinement with no warning. TBM is just that thing I have to deal with; to live with; to be in the thick of. I force myself to get out and go; not only for the sake of my sanity, but to keep my body moving as best it can at the moment. Most days I'm positive and know that God is with me and it's all going to be fine. My faith is strong enough to see me through anything life can throw at me. I have been granted more mercy and grace over the last few years than any one person has right to. I know I am a blessed person and try very hard not to take that for granted. Yet on days like today, when I'm forced to face the TBM beast head on, it can be a little much to handle.

So after all these months when people assume, as I would with anyone else after all this time, that I'm all better and well on the mend, I hate to correct them and most of the time just respond that I'm doing OK. Over the last month or so I've been repeatedly told how great I'm looking, even receiving an incredibly high number of compliments on how amazing my skin is - from friends and complete strangers alike. (Thank you, thank you very much!!!!) Inevitably, after the comments on my appearance, comes the, "You must be feeling much better because you're looking so good." How do I disappoint them by telling them that I've pretty much plateaued, continue to not feel only OK at best most days. By the way, on the days I do feel better, then I over do it and am right bak to OK - bad for the next couple of days. How do I tell them that I continue to have days that I cannot function as any normal person would on a daily basis? That I continue to have blinding headaches and debilitating shortness of breath that leave me bed ridden if not all day then at least half the day? (I had three such days last week.)

People mean so well and they want so badly for me to be better. They have told me they thought that after the surgery I'd be better and able back to living a normal life. Trust me, I want the same thing, but the reality is that TBM is a beast and there may not be any better than this. The big remodel was not a cure, there is no cure. It was a patch - literally a huge patch - that helped ease the symptoms and make breathing easier for me, but not a cure. I think that some people thought, myself included to a large extent, that post TBP, I'd be functioning at a pretty normal level and feeling nearly good as new. Hehehe!!! We were all wrong; and that's OK. I've learning to live with it and carve out a different kind of life than the one I had previously made for myself. I'm doing it pretty quietly, because it is difficult to feel like I'm disappointing those who've invested so much time and energy into my health journey and want so badly for me to be "me" again. (Do not say it, I know what you're thinking and I know I'm not an actual disappointment; the word just fit.)

The fact of the matter is that TBM is an invisible disease that even though it has a very concentrated area of destruction, it's devastation is felt in every tiny crevice of one's life. Nothing is untouched by it. Dr. King, the GI specialist, does think that he can get me to feeling better and for that I am ever so thankful and looking forward to this next chapter. Don't get me wrong, most days I can push through it to get done whatever it is that I need to get done and am quite happy, truly I am, in doing so. Nonetheless, believe me when I say that at this point I will take even the most minute of improvements. I am optimistic that Dr. King will help me, we will get this figured out, and I will feel better soon!

As always thank you for reading and taking part in my health journey. I do apologize that this one was pretty direct as to where I am in my journey, but it's all good. My next blog will be more upbeat and inspiring - I promise I have lots of good observations and lessons to share with you!!! Blessings to you all.