Tag Archives for Invisible Illness

Grounding Lines

I needed to release a lot of negative emotional energy today. All the terrible violent and racist activity that’s been going on in America since last Friday has put me on edge. In the past, I might have gone for a long run but running is not an option for me because of my illness and unceasing chronic pain. Instead I opened my sketchbook and started drawing lines. I drew lines until my mind started to clear. I kept drawing them until I felt grounded again.

If I’m being honest, I’ve been on edge for quite some time. It’s hard hearing someone, like the President of America, who holds such significant power, saying things that are divisive and so far from disavowing groups rooted in hate and racism. As all of this persists, I have to believe the people who don’t hold his opinions outnumber him. I also have to believe, people whose values are built on the basic premise that all human beings are equal will prevail.

 

Shopping While Housebound: A Joe Fresh Security Concern

I’ve been housebound for four years now. The pain I feel daily – every minute of every day to be exact – makes it difficult for me to go out to do the many things I once took for granted. I remember going for leisurely walks on cool fall days as the leaves on branches overhead cycled through a palette of beautiful autumn colours before gently floating to rest on the ground. I remember walking to my local ice cream store to sate my summer craving for a large cone filled with my favourite flavour(s) then slowly strolling along the sidewalk toward home as I savoured each moment before they melted away.

Shopping was never something I loved to do. However, in recent years, even before my illness, online shopping became my go-to method for buying the things I wanted; and since becoming ill, I rely heavily on this method of shopping to buy everything I need from groceries to cleaning supplies to clothes. For the most part, I’ve been able to rely on one online store to buy casual clothing I need for my now housebound lifestyle and gifts I need to buy for friends and family members or their children. Their clothing hits a price-point that doesn’t hurt my wallet too much, my size is usually available, and my orders usually arrive within a few days.

Sadly, they have fallen from my favour. A few weeks ago, I ordered some items from their summer sale because they were greatly discounted and because I needed to buy some presents. I made my purchases in two separate orders because they had back-to-back promotions offering extra discounts. When the first package arrived the contents smelled. All the clothing smelled as if the company stored them in a space that contained chemicals of some sort and rotting food. I tried to ignore the smell and laid the clothes out hoping that airing them out would eliminate the odor – it did not. When the next package arrived it smelled even fouler than the first. This meant I would have to wash or dry clean these clothes before gifting or wearing them.

As a courtesy – and out of curiosity – I contacted the company to report the issue and to find out if something had changed in their logistics process. Did they change their manufacturer? Were they storing their product in a new storage space before shipping them out to customers? Had any other customer(s) contacted them with the same concerns? The representative who took my call told me the foul smell was a known issue the company was working to resolve. He put me on a brief hold while he looked for a memo that outlined the company’s policy for addressing this issue if/when customers called. He told me the memo instructed that customers were to be refunded the total dollar value of the order placed online; and none of the items in the order had to be returned. That surprised me; and I asked him multiple times to confirm that I would not have to return anything to receive the full refund, which he did.

Well, over the last few days, that policy took an abrupt reversal. On the weekend, the company’s representative left a message telling me that the first order had been fully refunded. Then he stated that the second order, that was a higher dollar value, could not be refunded, “for security reasons”, unless I returned the entire order. Then I would receive a voucher card for a 30% discount on a future order. Huh?! There was no mention of replacing what I had purchased. I called the company back on Sunday to speak with a supervisor who told me she needed to review the memo on the issue and she would get back to me with clarification. She called me back on Monday with more backpedaling about issuing the refund.

 

She reiterated that I had to return the order to get my promised refund. What about the fact that I chose each item for a specific purpose or person and most were already washed, gifted, and/or no longer in stock from their online store? She said they would do their best to replace them. She asked how many pieces of what I ordered were still in my possession. I couldn’t see why that mattered. She then added a new reason I had to return the order: They wanted to test the clothing to figure out the cause of the foul smell. What?! If it was a known issue couldn’t the company do those tests without the clothes from my order? I asked if they had required other customers who reported the smell to return their orders. She wasn’t sure but assumed they probably had, which made no sense because they refunded my first order without any items returned. I asked again, why I was told that the memo related to the issue stated customers didn’t have to return anything to receive the refund. She wasn’t sure. I asked why the previous representative told me the dollar value of my order posed a security concern. She apologized for his poor choice of words and said that was not a valid reason.

After 25 minutes of this back and forth, we reached an impasse. The promise of a full refund from the first representative I spoke with was not going to be honoured for this order, without returning the items I purchased; and I could not continue to be a customer of a company that breaks its own policies and promises. The e-commerce universe is vast and Joe Fresh is not the only company that offers what I need. I chose them because they are a Canadian company and shopping with them was convenient. They are willing to discard me as a customer because they have so many that my business is insignificant. Joe Fresh labelled me a security risk after offering me a refund I didn’t seek out. Yet, the value of the order never raised any cause for concerns when I placed it.

 

The Pill Box

Every week, either late Saturday night or at early light Sunday morning, I go through the ritual of filling my pillbox with my medications. My pillbox has 28 compartments. Each gets filled with a varying number of medications in the form of pills or capsules. On average, I take a combination of about 32 pills and capsules each day. However, the 32 pills and capsules don’t account for all the medications I take daily because I have others that come in different forms i.e. liquids, inhalers, and – on the odd occasion when my gastrointestinal system protests against ingesting certain types of oral pharmaceuticals – suppositories. Early on in my illness, I was even prescribed a topical anesthetic for pain that came in patch-form, but it did little to reach the source of the pain deep in my pelvis.

The largest part of the pills and capsules that fill each pillbox compartment are medications I take to manage my pain. They aren’t all opioids/narcotics, but the majority of what’s in the compartments usually is. Unfortunately, not all these medications always do what they are prescribed to do. Therefore, over the last four years there have been many changes made to my medications. Changes in doses are usually an increase in strengths – as petite as I am I seem to need large doses to manage my pain –, but I’ve learned that dose increases doesn’t have to mean an increase in quantity. Some medications have also been swapped for others of equal strength when they have caused unexpected side effects or delivered no benefit at all after weeks and in some cases, months of hoping for some relief with them; and occasionally new medications get added to the mix in an effort to boost the benefits of what works.

The Pill Box – 1

The Pill Box – 2

Sometimes, the number of pills and capsules I take might fluctuate from day-to-day. That fluctuation depends on whether my doctor(s) writes prescriptions for medications with a minimum and maximum dose. Because my pain medications are largely opioids/narcotics, I try – not always successfully – to take the lower end of a prescribed dose when possible to manage my pain. My Pain Specialist prescribes my primary pain medication in two forms. The first is a long-acting opioid/narcotic prescribed to be taken multiple times each day that is intended to manage my pain for a scheduled period. The second is a breakthrough or ‘rescue’ dose of that same opioid/narcotic that I take in between the long-acting doses; especially in times when my pain levels are high, which is most of the time. I try to take that breakthrough medication on the lower end of the prescribed dose(s), when I’m having a good day, which is rare; or if I’m lucky enough to sleep through the night the overnight breakthrough dose gets skipped.

The main point of having a pillbox is to make sure I don’t miss scheduled medication doses because I take so many throughout the day. Unbelievably, I’m not always successful and might miss a dose of something from time to time, whether it’s because I get distracted or I’m fortunate enough to get some restful sleep. Nonetheless, the brightly coloured compartments of the pillbox that I fill with brightly coloured pills and capsules is my constant companion and may remain so as long as I need a reminder to take 32 pills and capsules – give or take a few – each day.

If you don’t have a pillbox, how do you remember to take your daily doses of multiple medications?