We spent the morning and a good part of the afternoon in radiology today. A little mix up at the front desk. Apparently there are several radiology departments. Such sweet people. So very kind. I just couldn't stand--this whole breathing deal. I'm just really weak. The kind souls kept wanting to bring me a wheal chair and didn't want me to walk. I opted for a regular chair until everything got sorted out. It did, and I got a pretty little bracelet (above :)) for all my troubles.
More tests, more x-rays, story of my life for what feels like forever. I live at my doctor's office and occasionally vacation at specialist's (my ENT being my favorite spa get away--they have the best coffee ;)). This was a little scary. I have scar tissue on my lungs, but we were making sure that that was all it was. Ruling out tumors again. Had been through this with my MRI for my head "issues", and now we were checking out the lungs. I knew it wasn't. It just wasn't. But, it's always a little frightening. Especially when you're so darn sick all the time. I allowed my mind to go 'there' for five seconds. Then I was done...
Marty drove as I couldn't. Max is in IC at basketball camp, so we were down one kid--the most well behaved one ;). But, G was so good. He was promised a giant cookie :). He was amazing, actually. Maybe he felt my somber mood . Maybe he just really wanted that cookie. We did our thing. Then it was time to wait. I hate waiting.
Nothing new. I had heard what I heard before. Scar tissue. Just hanging out within my lungs due to previous infections--pneumonia, various respiratory infections, what have you--pick, I've had a plethora ;). But, what I hadn't had before was all the information to go along with this. Scars don't sound so bad, right? Turns out the nasty buggers ARE what is causing all of my issues (on top of my preexisting asthma and allergies, of course). Amazing what being given information can do!
Good thing is, they're not contagious. I can't give them to you or my kids. Bad thing is, there is no "cure" and they really won't ever go away. But, I can learn to manage them. Again, information is a wonderful thing.
Here's the break down. Try to stay awake ;). Scar tissue replaces healthy lung tissue, which causes my lungs to swell and stiffen, making breathing difficult. I'm going to get all science on you now (well, as science as I get ;)): the tissue that lines and supports the alveoli, rather than expanding and contracting like they normally do like balloons, become less soft and elastic. They become stiff. This is what makes it so hard to breathe. This was my light bulb moment. I kept explaining this "rubber band like" feeling over and over and over again to my doc and ENT and my friends--it's like I can't get a full range of motion with a breath--it pulls like a rubber band when I take a breath in--catches and pulls back. Now I get it! And I keep using my inhaler and it just doesn't work--well, it won't work for that! I just needed someone to explain it to me. So, when I have an asthma flair up, get sick or get a cold or experience respiratory problems, that scar tissue gets all inflamed (and angry--Griffyn said :)). I really need to try to avoid that as much as possible. That's when I get blasted and all the really bad trouble starts...
Scarred lungs reduce the amount of oxygen that enters the blood stream and circulates within the body, causing lower then normal oxygen levels (hello, always being cold, poor circulation, and blue toes and fingers!!!) This also cause my shortness of breath, my inability (they called it 'reduced capacity for exercise') to run all this time, fatigue, and confusion--see, my love, it's not ALL my fault ;). It can also cause the mild frontal chest pain I've been experiencing (that ton of bricks and heaviness I always seem to feel and walk around with daily) and this off and on again cough. The meds to reduce the inflammation (hello, my best friend -- NOT -- prednisone!!! -- that I've been on at least eight times since January) completely negate your immune system and it says right on the darn bottle to avoid people with infections. I work with kids. So yes, I get sick all the time. I'm on a drug, constantly, that helps me breath, but completely wipes out my immune system. So the being sick all the time? Guess I'll have to start wearing a mask ;). The trick is to avoid being in places where there are a lot of germs when you are on prednisone. But when you are on it as often as I am, that's tricky--and do what I do, I should add.
So, if there is no cure, no wonder drug (beside insufferable steroids that are only temporary fixes to reduce inflammation during bad flare ups), what the heck am I supposed to do? Here were the suggestions and "prescriptions" I was given. Breathing exercises (yay, I get to utilize my yoga as therapy :) !). Managing stress and anxiety and making life style changes to stay as healthy as possible. ALWAYS avoid second hand smoke, moderate exercise like walking and yoga (yay again :)), eat very small but frequent meals to reduce stomach fullness so it's easier to breathe, get lots of rest, maintain a positive attitude (no really, we talked about this ;)), practice relaxation techniques, and avoid situations that can worsen your condition such as allergens (please people, take me SERIOUSLY NOW--all those many, many years of putting up with people not giving a damn about me or my kid's allergies certainly didn't help any of this, I'm sure--I'd always come home afterwards with an upper respiratory infection, sinus infection or bronchitis--just adding to the scars and mess), stress, high altitudes (traveling by air), etc.
Then we got into diet. Fruits and veggies, of course :). Anything rich in vitamin A and C--to fight deficiencies often caused by this issue--and to fight the physical weakness that goes with it and my increased risk for colds (my doc is a mega vitamin pusher--I take both of these already, but will look for foods high in them as well :) ). Whole grains to stabilize blood sugar. Anyone that's on prednisone as much as I am knows how it screws with your blood sugar. Holy toledo! Fun times! ;)And fatty fish. It helps reduce inflammation associated with lung diseases such as asthma. It also provides ample protein which supports tissue repair, improved muscle mass, and immune system function. Salmon, albacore tuna, herring, flounder--all examples with maximum benefits (okay, I'll admit it, I had to look these up as I know nothing about fish). I'm sure Marty and the boys will welcome ALL of these additions to our diet whole heartily!!! :)
I kept asking about the extreme fatigue. I mean, this is more than "I didn't get enough sleep for a week". It's "My whole body hurts and I can barely move and can someone carry me, please?" All, apparently, normal. Yay--I think? Once your lungs have been damaged, you will experience shortness of breath and severe fatigue. You may even struggle to preform the simplest task--like brushing your teeth (or in my case, the whole taking a shower thing just wipes me out). She stressed breathing exercises and doing them often. The lung's major function is to take carbon dioxide from your blood and replace it with oxygen and then your blood travels through your body and exchanges these gases in your muscles (I think I'm remembering this right). By adding moderate exercise and breathing exercise, you can improve your blood circulation which will enable your body to exchange as much oxygen and carbon dioxide as possible with your muscle tissue to optimize the impaired output of your lungs. When my carbon dioxide levels get too high, I will feel even more tired and I build up this thing called lactic acid in my muscles, which makes me feel sore all over (explains a lot also--that "whole body ache--even my bones hurt" feeling). So, I'm supposed to breathe in slowly and deeply and purposefully (this sounds just like my yoga mediation breathing :)). Fill my lungs completely then exhale slowly as if I am blowing out a birthday cake full of candles. I'm supposed to repeat this breathing exercise until I no longer feel tired or short of breath. If you see me doing this in public, do not be alarmed, I'm just blowing the imaginary candles out on my imaginary cake ;). Griffyn thinks it's fun. His is a bit spitty, however ;).
I go back in to see my regular doc again on Friday. That's our day :). Friday. We're doing some more lung tests. PT something, I've forgotten already--it's the lack of oxygen--makes me forgetful ;). Just going with the flow, I am not going to get stressed, I am going to realize how serious this is and take better care of myself. I cringed when my husband's mom called to see what happened today and he said, "oh it was still JUST the scar tissue". Turns out, it's a bigger deal than I thought it was. Now I need him to understand this as well. I'm going to need his help in all of this. It's going to be a big change for me--a person who pushes and likes to do everything themselves and is very OCD :).
I can't make it go away, but I can do my best to not make it worse. And I will. Zen-fully so :). Positive mind, breathing exercises, only good in, bad out, healthy eating, and not pushing a thing. Life will always be crazy--that's the nature of it--but how I chose to react to it does not have to be. I may get more worn out or tire more easily than some people, but that's okay too. I am learning to expect less from myself and learning I do not have to do it all. This is me, and this is my body. I'm no less of a person because of it--and just because you can't see the scars on my lungs or know why I am the way I am, doesn't mean I need to apologize for it or push myself to make other people happy. I'm just not doing it anymore. And there is such a peace in that for me today. Such a peace. Maybe it's the breathing exercises. ;) Or maybe it's knowing that if I don't take care of this, it will get worse, and it's not worth it to me to go there.
And the metaphor lover in me (oh my friends, they are everywhere :)) can't help seeing the analogy of my life and all the things I've been through and my "soul scars", as I call them, along with this scar tissue on my lungs that makes it so difficult for me to breathe. My soul scars do too. But with a lot of patience, slowing down, taking the time to focus on the good, turning my eyes to heaven, and really, really, for the first time in my life genuinely not caring what anyone else thinks or expects from me, just maybe, I can start to heal. The scars that are there will always be there. But I certainly don't need to make new ones. I'm excited to start this journey, scared, yes, but fresh and new--brave now--and thankful for the entire experience. There is a reason for everything and God always has a plan.
I'm a stubborn child. God needed me to walk a different walk. A walk that did not depend on an existence deemed by the value and merit based on the opinion of others. I look too much to that--and I know all the psychological ramifications for it and all the reasons for the need for that acceptance. But God doesn't want me to continue to walk that way and I just can't seem to break those chains. Now, with this new way to breathe, I can. I really think I have to. It's a physical reminder. One that makes me stop to think and breathe--literally. Thank you, Jesus. Thank you.
And that is all, my friends. I'm good. Fighting this nasty cold and respiratory virus still, but so very, very good.
Love to you all, as always. And so much peace :)!
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