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'

Lookin' for the High

As a runner, there truly isn't anything quiet like the adrenaline high you get after crossing the finish line or achieving a set mileage/time goal. I feel so far removed from that feeling lately.

Last Friday night I found myself in the ER. I was running a fever, having chills, sweating profusely and my joints were very inflamed and painful. While I've experience this situation before, it's usually because of the serum sensitivity and happens with I'm on IV medications. However, this was different because I haven't been on IV's since 12/15/15.

I just feel like a hot mess lately. I feel good for about a week or so, then I'm right back to square one - feeling crapping. I haven't been able to keep a regular workout routine, which affects so much for me. My mood, my energy levels, my diabetes, my lungs, my depression, etc.... In the brief moments of feeling good I do go for walks or a small jog and when I'm feeling icky and painful I try to do at least 15 minutes of yoga. It isn't much but it's something.

Yesterday and today I am desperately missing the high. That runner's high. That feeling of great accomplishment. When the mind and body function as one and you are in awe of just how awesome your body is and how powerful your mind can be when focused.

I know I'll get back to that place. I have to - for my survival and the survival of those around me. Until then I'm holding on to this image.

2015 Fueled by Fine Wine - 

Finish Line!!

~Doodlin'

What to say?!

CF is such a funny disease. Ok, not really humorous but fascinating. Its the only disease that affects and attacks every single part of the body. Lungs, pancreas, kidneys, blood sugar, sinuses, heart, reproductive system, vitamin levels, and disfigures the fingers and toes.

You know the saying "when it rains it pours?" That saying is perfect for CF, because if one thing happens it creates a cascade affect. CF isn't like most. Once you think you know whats going on and feel as though you've got a grip its all taken right out from under your fingertips. We are constantly playing a guessing game. Dealing with and sorting through a million layers of issues.

It's felt like its pouring over here for some time now. The worst part is the feeling of being alone or that no one really understands the struggle. It seems that all anyone can say is "I am sorry" or "I know exactly how you feel" which if I'm honest is complete crap. How could you?  I get that they're trying to be empathic but the reality is that you don't know and by saying you do minimizes what I'm struggling with.

I get that its difficult to find the right words to say to someone like me. Sometimes saying nothing is SO much more powerful than a book full of words. Having someone to just listen to me, without giving advice or placing judgement, is just what's needed. I can't tell you how many times in my 31 years I've heard someone tell me "it'll all work out" or "just stay positive"; as if I'm not already doing everything I know to remain positive.

The best thing you can do to support me is take a step back, breathe and listen. I just need someone to hear me, to lend an ear and possibly a shoulder.

If you have someone close to you who is dealing with some hard medical stuff below are a few things to avoid saying.

But you don't look sick: People expect sick people to look a certain way, but 96% of chronic illness and disabilities are invisible.

You need to think positive: Um, this is just crappy. If positive thinking would cure us, we wouldn't spend billions on toxic meds and doctors. This also indicates that it's our fault we're sick because we just aren't thinking positively enough.

Get well soon: HA!

You're just depressed: Depression cannot be described as 'just depressed'; its much more than that. It's the worst feeling in the world.

You just need to take you mind off being sick: That's just not gonna happen and not helpful. The disease is apart of you. Keeping my mind on my illness is what is keeping me alive. I've got medications to remember, doctors appointments to attend, etc. It's an ingrained part of me.

You need to be strong: The strongest person in the world will have bad days. We all do, because we're human and we need to let our feeling out.

Remember, if your struggling for words you don't have to speak. We humans have many levels of communicating.  A loving smile. A soft but grounded hug. Lending our ears or shoulders.

I'm looking forward to dry soil.

~Doodlin'

What I Know About Mental Illness

In light of the horrific news about the death of a promenant religious leader's son, who suffered greatly with mental health issues I thought I would re-address this topic. It's one that I am passionate about, it's a topic that hits close to home and it's something that I endure daily. I'm deeply sadden by the harsh critics of this leader's family and son, particularly in such of when they grieving.

I think somewhere along the way many have most certainly lost our compassion. So many need to point fingers, find answers or be able to answer the why questions, even at the expense of others.

I haven't spent a lot of time researching the why or how of mental illnesses. It could from be the many chemicals that we consume or place on our bodies that are altering brain chemistry, it could be that its always been apart of human existence but now we just have more medical knowledge to diagnose, it could be all the technology, I just don't know.

Mental health issues still have such a stigma around them. Many still believe that it's something people "grow" out of it or can "shake" it off with time. This simply is not true. Millions of Americans suffer from various types of mental illness such as depression, PTSD, obsessive-compulsive disorder and the list goes on. These are real and can be life altering and life consuming.

What I want you to know is that all who suffer from a mental illness want desperately to be cured so much so that many see the idea or act of taking one's life reasonable. It stops the suffering. A suffering that is so difficult to articulate. Many who have a mental illness are on medications to help ease the affects but those medications come with some serious side affects. Its not a fix all.

Those who love and support folks with mental illness are our biggest cheerleaders. For me, my family and friends have been there for me never deserting me when things got rocky. It takes a lot of patience, grace and love on their part. Its difficult for them to watch us go thru such torment. Mental illness a lot of times causes us to be self-destructive, which is excrutiating to watch and gives them the feeling of helplessness.

It doesn't mean we are mean people or uncaring or selfish. It means we have an illness from which we suffer the side affects. It means it masks the person inside. The person we want to unzip and show.

It is no ones fault. It isn't something we just wake up and shake off. Its chronic. Its lifelong.

For me, my deep depression and PTSD is directly related to living with Cystic Fibrosis. The chronic illness affect has caused secondary issues. I work hard to control the depression and PTSD but there are times that its nearly impossible. It sneaks up on me. Sure, I have trigger points particularly with PTSD but the depression is always there. Like a water bottle strapped to a runners side. Nearly undetectable but there nonetheless. Its powerful. It influences most my decisions. It plays a role in all my relationships. It impacts how I look at itself, how I "see" depression and PTSD, which is very different than how those without it "see" it.

I do know I'm in the trenches just like millions of Americans and untold numbers around the world. We need compassion, grace, and love. We don't need to be told to "shake it off" or that we'll "grow out of it". It wasn't that long ago that I was in a very desperate place and wanted to end the suffering.

If you're suffering please know your not alone. It doesn't go away but it can and does get better.

Please be gentle with one another. Approach others with kindness.

~Doodlin'

There and Back Again...A Tale of a CF'er

Its been awhile. I know. Lots has happened both magical and not-so-rosy stuff. From a hospitalization in early October to a lovely dream come true vacation to being sick just before said vacation to a crazy holiday season to being sick again.

There and Back...again!

The past few months I have not been healthy. Just when it seems like we've got it under control and I actually begin to feel slightly better I find myself sitting in the doctors office getting another round of drugs, blood work, etc.

Its toying with my emotions. Like boarder line depression. I'm whinning. I'm getting this out of my mind and soul so I can see the sunshine. I want to be "there" as in back to my base line. I worked so hard for two years, the results were inspiring, but this stint of "back" as in sick is sucky.

As it stands today my lung are rocking FEV1 is 82%, weight is a healthy 123#, energy level is way low, sinuses are looking nasty with a nasty culture of Pseudomonas.

Game plan: tackle the sinus problem. Antiobitics, steroides (I jokingly asked if i'd "bulk" up) and a CT scan.

I should note that I have the most compassionate CF Care Team. Amongst my ugly crying today in clinic they compassionately lovingly guided me back to sanity.

This picture I took on the drive into the city for clinic this morning and it really captures how I feel inside. A ray of light buried among the fog and clouds. But the fog will lift I'm certain!

~Doodlin'

My Suffering Has a Name: PTSD

At the CFRI Conference the schedule was packed with lecture sessions and networking. So, much so that you really had to picked which lectures interested you most and attend only those. There was no way to attend them all. There were two lectures that I felt very passionate about hearing; 1)PTSD and 2)Women with CF are Having Babies.

The one of most value to me after participating in the lecture was this idea that PTSD existed in parents with individuals suffering from chronic illnesses like CF. But more than that how I related to every. single. symptom. of PTSD. Heather Walter PhD, Director of Graduate Studies at The School of Communication, The University of Akron in Akron, Ohio who has a daughter with CF had read an article, Invisible Patient: Post Traumatic Stress Disorder in Parents of Individual with Cystic Fibrosis. (I encourage you to read the full article for further clarification.)

As she made her way thru the article she was astounded by how the article validated all the feelings she had since her daughter's diagnoses. The article focused really on the parents of those with CF and how the parents are often experiencing symptoms of PTSD such as re-experiencing, avoidance and arousal.

As I sat on the edge of my seat listening to her explain what each symptom was I was nearly moved to tears. She explained re-experiencing to include intrusive recollections and psychological distress. Avoidance includes selecting to make conscious or unconscious choices to avoid information or not to do some things. It also includes emotional numbness. Arousal includes hyper-vigilance, anxiety, irritability, anger, guilt, self destructive behavior and insomnia.

Wow.

I have been as honest on this blog about my journey with depression, loss, anger, self destructive behavior and even attempting to commit suicide as I could possibly bare to be. This is so real. The pain is so deep.

For so long I have struggled with a deep depression. Often times I was able to control it, to get a grip and function normally but my goodness there have been days, weeks and out-right long periods of time that I felt so alone. So misunderstood. Unheard. Many just say "pull up your boot straps girl its never going to change" or just diagnose it as depression, which part of it is. However, depression is not all of it. Anti-depressants doesn't help all of it. Because CF at this point is not going away.

As I continue this life with CF I am re-experiencing often times multiple times a year psychological distress. The things or events that have been traumatic I get to relive over and over. I have and do avoid information and/or things that I need to do in order to simply stay alive. My anxiety at times is beyond rational, I have issues with anger and have taken anger management classes to help control it and of course the self destructive behavior in arousal. I am beyond overwhelmed.

After Mrs. Walter ended her lecture I hurried up to exit the conference room in hopes to catch up with her as I wanted to talk to her more about PTSD, but from the patients perspective. You know us CFer's who are in the thick of this mud. She was awesome and we both agreed that there needs to be more conversations about this, more open dialogue for both parents and patients in the early years. So, that the medical teams can be informed that this is a real issue for some. So, that those who recognize these symptoms in themselves may be helped by simple self care; like rest, exercise, friends, family and avoiding destructive behaviors. The fact of the matter is that many think of PTSD in relation to post war trauma or rape victims, but it is present as a response to many other life events. PTSD can be just an episode or brought on by a new event that triggers them such as having a PICC line placed or a hospitalization.

Later on as the conference began to come to an end a woman pulled me aside. Asked me if I felt comfortable talking about my journey with depression. I was so glad she reached out. She is a mother of a child with CF who like me has struggled in this area greatly. After the conversation, a few tears from us both and a promise to stay in touch it left my mind whirling. In fact, I have been consumed by the fact that if the two of us (this women's child and I) have struggled so much I am willing to bet there are others out there. Who are at their wits end or nearly there.

Depression and PTSD are linked and often go hand-in-hand. I have been pouring over every piece of information about both depression and PTSD I can find. While I feel like I am currently in a good place with minor episodes of depression from time to time, I can't begin to explain how alone I felt during my teenage and early twenties, when I believe I suffered the most. I don't want anyone else to be alone. I want them to know that they can come out happy, fulfilled and loved.

I am determined now more than ever to be a voice. I don't know where this path will lead me but I do know that this fight should not be done alone in silence where the darkness can creep in. The suicide rate in young adults is high enough and I am thankful I didn't become apart of those numbers. We as a CF/Chronic Illness community need to be diligent in diagnosing this and finding ways to help treat it because it is a life-long battle.

This conversation is simply beginning.

~Doodlin'