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!

~Doodlin'


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!

~Doodlin'

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?

WHAT IS IT? WHY?

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!

~Doodlin'

Friday, November 11, 2016

The Book Challenge

Being that I'm an avid reader and I do lots of it during my breathing treatments. I started a reading challenge at the beginning of 2016 and I'm loving it. I've never participated in a book challenge before. I love that each book I log as read notches me closer and closer to my goal. It's fun to see progress like that. Sometimes in life we don't get to see progress as it's occurring but only when we stop to compare the then to now do we see change or progress. I know that's definitely true with my fitness level.

My challenge won't officially be over until mid-night on December 31st, 2016 and I'm sort of feeling like I need to hurry up on get a few more read so that I can not just complete my goal but smash it out of the ball park.

When I signed up for the challenge I simultaneously joined my library's book club and it's been a real treat. The book topics are very unique because each year club members submit books that they'd like to club to read and then the group vote's them in or out for a total of 12 books; one book per month respectively. Not only am I reading books I probably never would have I am also getting to know many of the folks in my local community.

I will definitely be doing the book challenge again for 2017. Hopefully, I'll have the guts to increase my books read by a few more than what I get through this year.

What types of challenges did you participate in this year? Will you do it again?

~ Doodlin'




Friday, October 28, 2016

Wash, Rinse, Repeat....

Much of the time I feel like I'm on a circular pattern in both health and exercise. Just like with our laundry cycle of wash, rinse, repeat; I, too, feel like my health cycles thus so does my exercise routine. 

It starts to get a tad maddening when you're cruising along, all seems well, you've got a nice routine going and BAM! I get sick or some new development in my health is found, throwing me completely off balance. I quickly find myself having to create a new pattern, a new routine and it takes time to adjust to these types of changes. In fact, I just start to get settled into my new routine or pattern only to be thrown out of balance; repeating the entire cycle over again. 

I notice it the most in my exercise routine/habits/pattern. I guess because I've had CF my entire life I've grown accustom to adjusting my life based on what's happening with my health. But as anyone who exercises regularly can confirm getting back on the wagon after a break or time away is extremely difficult. Its easy to get out of shape but twice as hard to get back into shape.

For me, getting back into shape also requires finding exercises I can do given my new state of health. A good example is that after I developed Pleurisy I was advised not to run, to give my lungs/chest time to fully heal. So, I had to find ways to do just that. I don't think I was very successful at it. I did yoga, lifted weights and tried to get my heart rate up but I just didn't feel the same as when I was able to run or jog. 

Hits like these that are on repeat make it really easy to throw in the towel and no one would blame me; except for me. If I feel like I can be doing better then it doesn't rest well in my heart and soul if I don't make changes to do it better. I convinced that I have just as much control over my health and overall well-being as my doctors and medications. 

After a few months off I made the decision to begin running again. Slowly. My goal is to just run 1 or 2-miles a couple of times a week over the next 4 weeks. It's winter, which means daylight is less and the weather is uncooperative most of the time. So there is no reason to push it. After 4-weeks I'll reevaluate, check in with my CF team and make adjustments as necessary. This is me doing better. This is me saving myself from going crazy. This is me attempting to stop the wash, rinse, repeat cycle that seems to be the trend.



~Doodlin'

Tuesday, October 11, 2016

Orkambi: 1-Year Update

I can't believe how fast time marches on. As of, Sept 13th I've been on Orkambi for 1-year. I remember thinking I'd never live to see the day that a drug that treated the underlying cause of Cystic Fibrosis would hit the market. However, on Sept 13th, 2015, that much anticipated pink pill hit my hot little hands and I joyfully placed it on my tongue with a big gulp of water - down the hatch it went!

Little did I know just how rough adjusting to this new treatment would be on my body. It was horrific for nearly 3-months. I wanted to throw in the towel a minimum of 5x, thinking this drug just isn't going to work for me; maybe they'll come up with another formulation that my body can tolerate. I was nauseous, had body aches & cramps, and overall felt like I had the flu for three very long grueling months. However, over time it all started to subside. I figured out things that my body needed to accompany this new treatment. For one thing, it's recommended to eat a high fat meal with each dose, this is especially true for me. I actually increased the fat intake to 20-30mg each dose. I also need a full 16oz of water with each dose. That helped with the upset stomach issues. These are still present today. If I don't have either high fat or lots of water I feel off and weird all day long.

So, fast forward to today. I'm feeling really good. I've had a few colds and other CF related issues throughout the year but I've been able to bounce back without the need for IV medications or hospitalization. Bryan and I became foster parents, which brought a different kind of stress to my life, that I am convinced without the aid of Orkambi would have driven me to the hospital.

While I think it has been a wonderful addition to my treatment regime, I don't think it's a miracle drug. Orkambi in combination to all my other therapies continue to allow me to live a fairly good quality of life. I will remain on Orkambi until further notice or something is released that will take its place.

I do think about how it will affect the younger generations. I'm hopeful that when they reach my age they won't be dealing with significant decreases in lung function, pancreatic disease, CF-relataed diabetes, arthritis and all the other things CF affects/does. That taking Orkambi early on in life will assist in dramatically slowing the progressiveness of CF.

We ARE making great strides and there IS so much hope.




~Doodlin'

Tuesday, March 15, 2016

Vacation 2016 - Channelling Our Inner Child

I'm a big believer in taking a vacation. Whether it's simply staying home or going some where you've alway dreamt of. Taking time to for ourselves and our relationships are so important.


Last October, hubby and I discussed doing just that. We were torn between two different destinations; Costa Rica and Atlantis at Paradise Island Bahamas. We eventually settled on Atlantis. Our reasoning was that we aren't getting any younger. So, we clicked the "book" button for a Bahamian getaway in March 2016.

Fast forward.

We are back from our Atlantis vacation We had a great time. We were able to be kids again We were thrilled by the ability to channel our adolescence side. We spend our time exploring the marine animals, all 22,000+ species of them and the AquaAdventure park.


I love just going, seeing, doing and adventuring. I guess you'd say I'm pretty easy to please. Channelling my inner child was more fun than I thought it would. Being a serious adult has become so ingrained in me that sometimes I forget how to have fun.

Leap-of-Faith


I'm so blessed to have husband who works his tush off so we can have amazing experiences in life together. He's so amazing. Seriously!

We have a fabulous time. I don't know how many times he/we did the slides or river but I can tell you it was fun - even for 30+ somethings as ourselves.



Many of the rides allowed double inner-tubes. We took full advantage of the rides let us go together.  When we wanted a little R&R we simply found a lounge chair and basked in the sunshine. But that was second to the rides...






All-in-all we had a great time and wished we were still there or at the very least brought the sunshine back to Oregon with us.

~Doodlin'
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