Of Bicycles and Beaches: California, Part 2
I consider my family to be nomadic. We have lived all over the United States, and I have lived in Asia on two separate occasions. For a while, my father even worked in Canada. Every place we reside, we discover our own favorite local activities. For California, my parents discovered riding their bicycles along the beach. They wanted to show me their route along Venice Beach.
The Early Morning Alarm
While I love the cortisol pump, it is far from perfect. Occasionally it will alarm to notify me of a malfunction. Although the number of alarms is drastically reduced with proper site changes, it is not eliminated.
Even though I am on the cortisol pump, I keep oral Cortef at my bedside with a bottle of water. If my site goes bad, there is no way to know the amount of cortisol that I have absorbed. This is especially dangerous at night. During those very infrequent times, I immediately swallow Cortef and wait for it to kick in. I do not want to be troubleshooting my cortisol pump on a low cortisol brain. That is a recipe for disaster.
At the first alarm, my first instinct was to silence it and pretend it was a dream. Thankfully, the pump is smart enough to alarm again if the problem has not been resolved. As you can see from my alarm history, it actually took three times before my 4AM brain went, “Hmmmm. I should probably fix this.”
Note: It states “insulin flow blocked” but I use Solu-Cortef.
Thankfully, this alarm did not require a full site change. I swapped out the tubing and the reservoir. We have a phrase within our cortisol pumper community: “When in doubt, change it out.” We memorize this phrase and repeat it back to each other. If something seems off or wrong, we need to immediately check our pump site.
With the pump no longer alarming and medicine delivery resumed, I was able to sleep for a few more hours. I am thankful that my early morning adventure did not prevent me from the actual adventure planed for the day.
From Venice to Santa Monica
Venice Beach and Santa Monica pier are located about two miles apart. My parents decided to park at Venice and ride our bicycles up to Santa Monica.
In the past, I have had several pump infusion sites fall off due to sweat while I was participating in physical activities. This was before I discovered GrifGrips. It is an adhesive patch that glues my infusion site securely onto my skin. I can be active without a fear of sweating off my pump site! For my entire bicycling adventure along the beach, I had Mr Gator firmly protecting my pump site, with my pump in a case attached to my arm. I could ride a bicycle without hindrance! We were ready for adventure!
We decided to walk our bikes through the street vendors of Venice. Around lunch time, we began to hunt for a spot that could provide me with gluten free food. I walked up to the host of one restaurant and asked about their gluten free selection. I was met with a long pause and eventually, “…. Uh… We have salads?” My parents and I decided to move on.
I asked the hostess at the next restaurant if they could accommodate gluten free. The hostess chuckled and said, “Of course. We can make anything on the menu gluten free.” I was skeptical, but decided to try it. We quickly snagged a table at Venice Ale House.
It turned out that the hostess was accurate in her assessment of their menu, much to my delight. There were ample gluten free options. In addition, they only served one type of macaroni and cheese: gluten free. They refused to serve their gluten free patrons sub-par food. Instead, they created a gluten free mac and cheese so delicious all patrons would enjoy.
I am always appreciative of this philosophy. My medical conditions should not make me a second class citizen where I am charged a premium for less appetizing food. Sadly, that mindset is far too common.
After our delicious lunch, we continued our bicycle tour. We rode past the Original Muscle Beach and continued on, locking our bikes to explore Pacific Park and the Santa Monica Pier.
Throughout the bike ride, I would swallow salt tabs at regular intervals. I also added in some oral Cortef. Although I am on the cortisol pump, I still take oral steroids when I require a bit of a bump dose during days of extra activities.
All in all, we biked around four miles during the heat of the day. My parents considered sitting at the beach, but when I verbalized how fatigued I was, they changed their plans and we headed home. By speaking up and saying “I had a really good day. But I am ready to go home now and rest” I set myself up for future good days.
I am Clearly Alive.
Debbie
I this blog, you said, "when my site goes bad…"
Can you please describe? When my cortisol is low, I've notice blurry vision. I take a pill and it gets better in about 30 minutes. I've never heard anyone mention this before or seen it in the lists of symptoms. Yet, I experience it often. Is this possibly the same as you are talking about? Why do you think this happens?
Unknown
Amber, I need to thank you, believe it or not, your blog literally changed my life. I have adrenal hypoplasia congenita, this is an X linked recessive disease that leaves me completely aplastic, or without adrenal glands, I was lucky at 6 weeks of age in 1980 a very astute pediatric medical resident put my failure to thrive symptoms together and diagnosed me originally with Congenital Adrenal Hyperplasia, luckily both are forms of adrenal insufficiency and basically treated the same way, glucocorticoids and mineralcorticoid (florinef). Well what I want to say is I am a physician in Internal Medicine that recently finished my residency. I ran into major issues during my residency with crisis after crisis and despite being a physician, and being acutely aware of treatments for adrenal insufficiency (even the first successful adrenal transplant that was done in New York City in the early 2000s) I had not heard about pump therapy. After reading your blog, reading the research you provided, and reading other research I cam across I made the leap and brought the idea to my endocrinologist. He agreed to give it a try and for the last 15 months my life has been changed amazingly for the good. I literally endured 50 hospitalizations for Adrenal Insufficiency, crisis, or infection secondary to immunocompromised state prior to getting my pump. In 15 months I have only been hospitalized 3 times…all for infections (being around sick people all the time is not the best idea for someone on chronic steroid therapy). As you say pump therapy is not for all, but it is great for me. Luckily I have a wonderful wife and we have the same motto When In doubt Change it Out and she often sees the subtle signs of an issue with me before I realize it. I was wondering if you have noticed any changes recently in obtaining solucortef, whether through in surname or not. I have recently had a few insurance companies out right refuse to even consider to cover the drug, or insurance companies give a max of 1 vial a month for "emergency" use and not more. I basically go through 10 – 11 vials a month depending on stress dosing, and I have noticed a steady increase in the out of pocket cost of the steroids, from about 7 or 8 dollars a vial to $17 a vial, with discount drug cards I can get that down to about $13 a vial, so $130 a month is not terrible to pay out of pocket for me, but I worry about other patients that would depend on their insurance to help them have a reasonable monthly co-pay under $100 a month. Do you have any secrets or suggestions to share, I don't know why the cost of an ancient steroid medication is increasing in cost as it gets older…..but that seems the trend with lots of medications. One oral steroid that has been around since 1985 that is mainly used for muscular dystrophy went from about $12 – $20 dollars a YEAR to $90,000 a YEAR, the government sort of stepped in, and the company has now dropped the price to $32,000 a year! Well anything you can share would be great. – Thank you Amber – Sean
Amber Nicole
Pump sites have a 2-3 day life before the absorption of the medicine goes down. This is why we must change out our sites every few days, and sometimes sooner if something just seems off. The first thing we want to make sure that we are actually getting the medicine that we think we are getting, otherwise we'll get all sorts of unpleasant low cortisol symptoms.
I'm trying to think if I get the blurry vision too… For me, I think it starts out as just a general feeling of "not good" but it's hard to describe.
I hope that helps answer your question!
~ Amber
Amber Nicole
Sean,
I am SO honored that my words were able to help secure you a better QOL. I know the pump has made SUCH a huge difference in my life and was worth the initial learning curve.
And now that you mention it – Yes. The price of Solu-Cortef keeps increasing. When I picked up my most recent supply, it had increased $0.18 / vial in the past month! When I run the numbers (because I totally have an in depth XLS tracking all medical expenses for the past 5+ years), I actually pay $2.40 more per vial than I did exactly one year ago. The cost does concern me, especially because I also have to cash pay using a discount card.
I will say that the exact same drug is MUCH cheaper in Asia. I was able to get Solu-Cortef from Belgium Pfizer for about $4 / vial. It also came neatly packed in a flat of 25 without all the stupid paper waste. My thoughts on that are here: https://www.instagram.com/p/BU_On3JFz1_/
As for insurance coverage, oh that was a fun battle that I ended up just admitting defeat. My thoughts on that experience are here: http://clearlyalive.blogspot.com/2016/06/catch-22-chronic-illness-style.html
How I wish there was some magic trick to make the cortisol pump life cheaper. But I view the monetary cost so worth the improved quality of life and the reduction of hospital stays.
~ Amber