Tag: fatigue

Holiday in the Sun

3 Comments

I come from a family of devoted vacationers. Like those before me, I thirst for a relaxing and equally exciting break from the hustle and bustle of modern living. For me a vacation is a period of time set aside to heal and rejuvenate my body, an opportunity to post better Instagram pictures (Kidding…or I am?), a warning to cease all calls with the insurance company and pharmacies (I know they’ll miss me), and a moment to just enjoy being alive with the people I love most.

My husband Peter and I just returned from a break with my family in sunny Florida. We had a great trip, and it’s bittersweet coming home and jumping back into the reality of our lives. All those phone calls I didn’t make were still waiting for me as we drove home, but I missed my cat so by the time we hit the Ohio state line I was eager for familiarity.

IMG_7345_WEBIMG_7115_WEB

Here’s my guide to vacationing:

p a c k i n g

Preparing for vacation with CF is an unique adventure to say the least. When packing, I usually gather all my medication and equipment first before packing any other items since they are the priority when space inevitably starts to run low. On this trip, I brought both my vests, two weeks of medication in a 7-Pack pill box, two nebulizer machines, six nebulizer cups, extra nebulizer tubing, a mini sharps container for needles and diabetes lancets, my glucometer and supplies, microwave sterilizer bags to clean my nebulizer cups, and the rest of my human things.

Am I too prepared? I understand it sounds a little extreme to bring two nebulizers, but I can’t explain the sheer panic that wells up in your body when your nebulizer dies while you’re out-of-state. Been there, done that. #neveragain

I wouldn’t consider myself a light packer. Yeah, I am pretty sure I am the complete opposite of a light packer. It comes with the territory of a chronic illness and someone who owns six bathing suits. It used to bother me that I could never spontaneously pick up and wanderlust my way through the world (I could but we would have to strap my vest to Peter’s back, and that’s just cruel and unusual punishment).

Now I realize, I still have the physical ability to leave as long as I bring my “baggage”, and that’s all that matters. You have to learn to adjust in life. For me, bringing all the necessities stings less when I remember my friends with CF on the transplant list not being able to venture beyond a 3-hour radius of the hospital. I am grateful for my freedom, as always.

IMG_7261_WEB2

t r a v e l i n g

Since we decided to drive to Florida and would be stuck in the car for extended periods of time listening to the audio book, The Life We Bury, I had to do my treatments on the go. Using the cigarette lighter with the help of a power inverter to complete my nebulized drugs, I used my Afflovest which is battery powered for therapy. Each time before turning on the nebulizer, l silently prayed I wouldn’t blow up Peter’s car en route. I just know that wouldn’t be a good situation for our marriage. Also, the Afflovest looks like a throwback early 90s child life jacket, and I am positive the nearby cars thought I was sporting just that. My advice to myself: throw them the peace sign and crank up Justin Bieber. #belieber

IMG_7394-2_WEBIMG_7370_WEB

t r e a t m e n t s

One of my favorite times during vacation is sitting down each morning, coffee in hand, to do my treatments in the sun. Something about the change of scenery makes the entire process a little less daunting and mundane. I am always rushing during my normal routine, so the chance to leisurely complete my treatments surrounded by my family members seemed like a vacation in itself.

I warned my family prior to our trip that we would be completing one page each day from Start Where You Are: A Journal for Self-Exploration (Meera Lee Patel). Most members obliged during morning treatments, and it was so great to hear about everyone’s hopes for the future, what they valued most, and their perceptions of themselves. I enjoy learning about people in anyway I can, so I really love how this book allows you to ask the important questions.

t h r e a d s 

If we are being honest with ourselves, CF bellies are the absolute worst. I’ll never understand why scrawny arms and legs are partnered with obvious stomach distention in this disease. For all the coughing we do, we should be rewarded with rock hard abdominals. That’s not reality, though. Oh, well. To give myself a waist and the illusion of hips, I rely on wearing high-waisted bottoms while combing the beach or relaxing in the pool at the house. They are the absolute best when mixed with flash tattoos that even my grandma loved sporting on the beach. #buddahbelly

Just below my top on my rib sits my portacath as part of my tropical uniform. I know people probably stared and were left to puzzle what purpose the bionic bump serves. Truthfully, I am more indebted to that port for helping me than I will ever be to a stranger’s critical eye. It’s important for me to remember that. So, I wear my port with the utmost pride because beauty is not only skin deep.

IMG_7431_WEBIMG_7421_WEB

h e a l i n g

Even though I had taken time off from work, adventured on kayaks, and spent most my days collecting freckles in the sun, the reality is that a vacation from CF just doesn’t exist. About half way through our trip, I felt my body beginning to break down and slow down. Due to breathing in the naturally salty air and too much mermaiding (probably), Wednesday night I started coughing up blood which is very normal in CF, but less normal for me. My mom, who can detect my unique cough in a grocery store during flu season, came into my room and suggested it was time to drink tea and rest. After a night in bed reading A Life in Men (Gina Frangello) and stopping my inhaled sodium chloride treatments for a couple days (CFers inhale salt water to restore moisture in our lungs and help clear them), I felt better and restored.

Slowing down and yielding to the healing process of CF, especially on vacation, can seem impossible. I suffer from an extreme case of FOMO (fear of missing out) with my family which causes me to push myself, sometimes beyond my limits. I am still learning to find the right balance between experiencing, managing, and healing in my little world of chronic disease. A holiday in the sun always serves as a good reminder to slow down and enjoy your time doing whatever you are doing. Embrace the JOMO (joy of missing out).

Thanks for a great trip, Florida! I miss my family, the dolphins, and early bird karaoke already. The restoration before the busy spring and summer is exactly what we needed.

Health Update: Physical Therapy, Orkambi & IVs

1 Comment

This week was filled with appointments, decisions, and rearranging of medications.

On Monday, I graduated from physical therapy after eight weeks! Wahoo! How pumped am I to stop paying to workout early in the morning on my day off? The answer: So pumped. Really, PT was an excellent experience, and I am excited that it helped minimize the pain in my back from coughing and daily living. In PT, the therapists and I started with aligning and stretching my shoulder blades to achieve better posture by opening up the chest. I was taught different exercises to strengthen the shoulder, arm, and chest muscles that hold a lot of tension from coughing with the help of weights, bands, and foam rolls. Lastly, we worked on cough technique to better engage my abdominal muscles and keep my back straight, instead of contracting and rounding the shoulders on every cough. (CFers- bend forward at the hip instead of the middle back when coughing. You will feel like a new person!)

PT was also a humbling experience to say the least. In the midst of the coughing, sweating, and soreness, I recognized how simple movements and mindfulness of body placement could ultimately heal an aliment I never thought mendable. I am so thankful for the therapists’ expertise and advice. It felt wonderful to treat an issue with positive results and therefore, gain a sense of control in a body that sometimes feels wildly out of my control. Plus, there is nothing more humbling than a high school gentleman watching you do “pelvic tilts” on an exercise ball. Yes, it looked just as provocative and cringeworthy as it sounds, but I could only laugh at the ridiculousness. All in all, I highly recommend physical therapy to all my cysters and fibros out there and to anyone who is suffering from daily pain with little relief.

2016-01-09_Post1_WEB

On Wednesday, I headed to CF and CFRD (cystic fibrosis related diabetes) clinic with the wonderful company of my dear best friend and cousin, Cara. I told myself going in that I had no expectations as to what my PFT (pulmonary function test) or the plan of action would be. I have learned over the years to go into appointments with little expectation, that way I am able to focus on the positives of a bad appointment or celebrate the victories of a good appointment without feeling weighed down by disappointment. I knew I had been fighting a low-grade fever, increased cough, and fatigue (an on going problem for the past 5 months) but was unsure of what my doctor would say. My PFT was only down a bit- 65% and still one of the highest numbers I have seen in the last 12+ months. Those high numbers are very encouraging, and I still don’t believe this is reality when the respiratory therapist reads off the score as I catch my breath posttest.

The conversation between my doctor and I became increasingly complicated as we discussed my symptoms, life on Orkambi (a drug which targets the cause of CF), and the options available. In early December, I took myself off Orkambi for about a week (whoops) and realized how much better I felt without the drug. I had an inkling Orkambi was to blame for my level of fatigue, aches, tightness, and shortness of breath, even though the tests showed clinical improvements within my lungs. When Cara asked what I felt like, I told her, “Every morning, I wake up feeling like I lived another day in my sleep. There is no break in the fatigue.” Eventually, I was faced with a difficult decision: a) Stop Orkambi and risk losing lung function but feel better in the near future, or b) Continue Orkambi and keep my lung function but feel poorly as I do as a result of the side effects. What would you do if faced with this decision?

2016-01-09_Post2_WEB

Ultimately, I felt stressed making this choice. I didn’t want to disappoint Peter or my family who felt an immense sense of hope as a result of Orkambi. I didn’t want to be the patient that discontinues a drug thousands of CF patients wish they had an opportunity to be on. More importantly, I didn’t want to risk the possibility of never gaining that lung function back. However, quality of life has always been my top priority, and we agreed that if I am not able to enjoy the benefits of Orkambi after five months because my days are overwhelming burdened by fatigue and aches, what’s the point? So, for the time being, Orkambi will be removed from my list of treatments and I’ll go without.

I do want to say how very thankful I am for the opportunity to take Orkambi for the past five months. It really is a fascinating (and ridiculously expensive) drug that allowed me to cough less, use less insulin, and obtain better lung function. I can’t believe we are at this point in the advancement of CF research, and it is a time filled with so much hope. My doctor ensured me that numerous innovative drugs are coming down the research pipeline, and one of those drugs may be the perfect fit for me in the future. For now, I can enjoy the days while I wait and know that I have tried all the options available to me with a peaceful heart. I am thankful for such a great and supportive care team who continually reminds me that how I feel is more important than a number on a screen.

Now, the goal is to “reset” my body to determine what my daily baseline looks like without the effects of the drug and after the help of IV antibiotics. I definitely didn’t expect to be on IVs again this soon since I last had them in October/November. With the fever, cough, and fatigue, they are warranted. Truthfully, I am relieved, though. I can’t wait to see who I am without the weight of Orkambi and with the help of IVs to nudge me towards a version of myself I almost forgot existed. Goodbye, fatigue and grumpiness!

So, here we go again- no Orkambi, on IVs, and working to feel the very best I can.
I am snuggled in my bed, and 2016 is certainly starting out with a bang.

Be Still and Christmas On

5 Comments

It’s the most wonderful time of the year!

Peter and I decided to put up the Christmas tree this weekend and officially welcome the holiday season into our cozy second floor duplex. If you want my opinion, the tree should have gone up the day after Halloween and we could have enjoyed the twinkle lights, childhood ornaments (including an orangutan and lots of baby dolls), and Sybil’s picturesque naps under the tree for that many more days. Christmas can never come too early in my eyes, but I have learned that certain folk around here have very strong feelings about appropriate holiday timeframes. So, we waited to put up the tree due to a busy schedule and peer pressure. To them I say, “To each their own”, and to me I say, “Can I get a tree for every room?” Ultimately, the answer is no.

Christmas is my definite favorite time of year. Ask any one who knows me and they will certainly agree that my internal clock cycles around Christmas. It is the start and end to my calendar year and what I find myself looking forward to beginning December 27th (the 26th is devoted to post-Christmas depression and only that). As you can imagine, I was itching to decorate the tree. I was eager for the forthcoming nights of beaming warmth that set the scene for my one-woman shows that include Claymation sing-a-longs while dressed in my Santa PJs, novelty socks, and mistletoe headband. That actually happens all the time and I suddenly feel very bad for Peter.

Oh, well.

2015-12-03_Post1_WEB

After the boxes were awakened from their slumber and brought up from the basement, we stacked the tree, added multiple strings of lights and sprinkled the ornaments about with minimal bickering (newlyweds, can I get a hallelujah?). Then, an unsolicited feeling that has burrowed its way into my body for the last year became overwhelmingly apparent: tiredness. Next, the dreaded mental reminder that I have become sick of hearing crooned: Sit down and take a break. “Take a break” has practically become my mantra this year and I dislike it very much. Honestly, I wanted to keep going, and so I threw a silent tantrum and walked my sorry Christmas-self to the couch and sat down to pout.

It is in these moments that I realize how little control I have in my own body. How I spend my days strategizing and how some days that perfect strategy doesn’t even come close to fruition. It is discouraging. I want to keep up with my husband and prove that I am fine, that CF plays such a small role physically that I am able to push on. In reality, this is far from the truth and my supply of oomph empties long before the project is finished usually.

Still taking a break…

After those negative feelings dissipated and I came to my senses, I heard this year’s counterargument faintly whispered, “Be still.”

To me, “Be still” is an unabridged prompt to the goodness that is my life. Be still means:

Janeil, rest now and enjoy this moment you have been given. Take it all in, smile at the people around you, and be grateful for this day. Be still in your discouragement and worry. Be still in your plan and expectations. Be still in your stubbornness and resistance. Be still in your pain and fatigue. Be still and rest. Be still and know that I am God.

The Christmas tree went up, I rested, and the Savior that is born this month fulfilled the everlasting promise of contentment in my life. I love Christmas for this very reason. Christmas beckons for us to be still. It is a time to cast away our worries and our darkness to focus on the glory and joyfulness of the past, present, and future. I have been abundantly cared for this year, despite my inability to be still. Christmas is a time to celebrate that noble gift and I plan to do just that (in my mistletoe headband).

2015-12-03_Post2_WEB

Happy holidays, everyone! I hope your homes are filled with peace, warmth, and joy this month and always.