Monday, August 21, 2017

Total Eclipse

Today, August 21st, 2017 we experienced a nearly total eclipse (99.24%) at 10:18am in the Portland, OR area; with a handful of cities in Oregon experiencing a total eclipse. It was a really cool experience, I do have to say. Of course, there was a ton of hype leading up to the event but when it was all said and done I'm glad I took the 30-ish minutes to be still and watch this rare occurrence.

The ability to sit, be still, calm and listen to my breath was just what I needed. I know I can do this anytime anywhere, but coupling it with a spectacular view of natures epic-ness was really spectacular.

(99.24% eclipse, photo via iphone thru eclipse glasses)

I'm gonna have to take a lesson from today and implement it for future days to come. Not sure about you but I tend to get so wrapped up in what I need to get done I forget to take a moment to appreciate the beauty around me. Nature has some pretty astounding views right out my doorstep and I should be more appreciative of that by taking notice. 

Lesson learned!


Tuesday, April 18, 2017

The D.I.S.H

The latest gossip on my lung pain mystery is that I have Diffuse Idiopathic Skeletal Hyperostosis or D.I.S.H for short. The thought process is that the D.I.S.H is contributing but not the only reason for the pain. 

D.I.S.H is a hardening of ligaments in areas where they attach to your spine. In my case, this makes a ton of sense. I've been seeing a Chiropractor for sometime now because my upper and middle back, specifically along my spine, feels very stiff. According to my Physiatris, this can present as lung pain or feel like lung pain due to the vicinity of the areas and is very common on right side. It's thought that I've developed the condition from prolonged Vitamin A use along with having Polyarthritis. 

The inflammation in my lungs from the scarring and long term affects of CF related infections, along with D.I.S.H, appear to be the majority of where my lung pain is stemming from. It feels good to have an idea of what this sudden onset of pain most likely is from. 

However, D.I.S.H is not reversible unfortunately. Once the ligaments begin to harden there isn't much that can be done. We can do a few things to ease the inflammation associated with it as well as prevent other ligaments from hardening. 

To Learn More About D.I.S.H: Diffuse Idiopathic Skeletal Hyperotosis

I've added a few new "medications" to my already ridiculous regime and thus far it seems to be working. I still have a dull pain but it's totally manageable day-to-day. I've begun exercising again, which is amazing. I release a lot of stress and anxiety through the use of regular exercise that living without for awhile had me feeling like I was locked in a small cage.

So, now you're update on the last gossip!


Tuesday, February 7, 2017

Lung Pain: The Mystery

Man, life has been exhausting lately. It's safe to say that 2017 hasn't started off the way I had hoped, nor did 2016 end well either. In December, I was hospitalized with lung pain. We started the admission off like any other stay with IV therapy, chest PT and rest. We also decided to have a bronchoscopy done to see what the lungs looked like and to "flush" them with a antibiotic rinse. I have never had a bronchoscopy, so I was extremely nervous. The idea of "flushing" my lungs was a PTSD trigger and had me thinking I'd feel like I was drowning. To be honest, it was one of the easiest procedures I've had done in a very long time. Easier than a PICC line placement, seriously!

Nothing majorly unexpected came back for the bronchoscopy. My lungs do have some scaring and diseased areas along with testing positive for Aspergillius (ABPA). Besides that, for being 34 w/ CF, they looked pretty good.

Treating the Aspergillius (ABPA) isn't as straight forward as one would think. Due to a few other medications I'm taking I'm hesitant to start treatment. I would have to stop taking my Orkambi, which is a drug I've waited my entire life to be on and the side affects during the first 3-months were horrendous. I really don't want to go through all that again. In addition, there is no guarantee that treatment will work.

That's all well and fine, but why am I experiencing this excruciating lung pain? Is it Pleuritic pain? Is it just random inflammation? Is it the ABPA?


The unknown is so hard for me to cope with. Being active is what keeps me sane and with this pain I can't run or do my exercise machine regularly. Heck, some days I can't even function normally because every breath is painful.

After a few days inpatient I was cleared to go home to complete IV therapy thru home healthcare. Being home always brightens my spirits. Treatment at home went smoothly and as expected. I continued to have lung pain, some days it was excruciating while other days it was hardly noticeable. On the days is was minimal I tried to get motivated to go for walk or do my exercise machine, but those days were rare.

The holidays came and went and so did the lung pain. My life was irregular, no real schedule or regime. I was drugged up on pain meds when it was intolerable. The feeling of no control is a helpless place. I began to recognize that my depression was getting worse. The unknown of why this was happening along with no outlet, no running or brisk walking, to burn off the frustration and helplessness was taking a toll.

This cycle went on until late January I woke up in the middle of the night in tremendous pain. I tried to muster through the night so that I could call my doctors first thing in the morning but I couldn't, it was too much. Hubby took me to the ER, where a CT scan revealed a pocket of fluid in my right lung. I was admitted for another stay.

The first thought was that I had pneumonia, but we sort of ruled that out since I was not exuding other  symptoms related pneumonia, like a fever; only the fluid in the lung. A plan was put in place to receive another round of IV antibiotics, along with pain meds and medications that treat nerve pain. The hope is that my body will take care of the fluid. I'll either cough it up and out or it'll be absorbed.

Here we are at present day. I'm still experiencing lung pain with no idea of why. I'm still largely depressed. However, I'm pushing though. I've start Pulmonary Rehabilitation, I'm doing my exercise machine 2x a week and I ran/walked a mile last week and will again this week. If the pain is going to be there then I have got to figure out how to work with it. Sort of like working with a co-worker you aren't fond of. It's painful at times but you just push though.

Sometimes we have to accept the pain and use it to our advantage. Yes, running is painful, particularly due to the heavy breathing. But it fuels me. It pisses me off and I push harder. CF will not win. EVER. I will make this new normal benefit me and not destroy me.

My goal for 2017 was to run a marathon. It might take me longer to accomplish but it will happen. I will not cry one more tear over the thought of giving up on this dream. I will use that emotion to propel me forward; the pace might be slow but it will be forward movement.

This mysterious lung pain may never be 100% diagnosed and I have come to accept that. I've come back to a place that is hopeful. Each day is full of opportunity to do something; run, walk, yoga, etc.

This is my run/walk last week. I was smiling the entire time!!

We can use our circumstances to hold us back or propel us forward. I want to be propelled to the farthest point possible. Here's to hope and pursuing our goals!

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