In Search of Simplicity

My new year’s resolution was “simplify.” Just that. Make things more simple. Work things. Home things. Mental things. Physical things.

It feels like the universe took this resolution as a challenge. Since I wrote the word “simplify” in my journal, the choices have become harder, my relationships have been put on the shelf, and the scales have tipped entirely toward being overwhelmed and approaching burnout. So much for finding some balance.

I envy the people like Sara Gorman, author of Despite Lupus, who have been able to quit full-time work and bring their life and disease into balance. The choice is not at all clear from where I am sitting. Income from my job supports our family singlehandedly. I have excellent health insurance – a necessity in my case – a pension and a retirement savings plan. These are huge things to consider giving up.

I did some research around Christmas, just to see what health insurance would cost without my employer, were I to do something crazy like try to live off my Etsy store, and the automated estimate said with my condition average out of pocket yearly costs exceeded $150k. A gut check says that’s probably not accurate, but even if it were 10% of that number, it would be completely undoable. The fact is that my job pays for the medication that allows me to be a productive member of society. It’s a catch-22.

Since I was quite young, my version of paradise has been a small cottage on the coast. I remember writing a short story about it in 9th grade when I lived in Montana, far from the coast, largely inspired by LM Montgomery and a recent vacation to Oregon. I can still see the imagined rooms I was writing about. Since I moved back to the Pacific Northwest – I was born here but moved away when I was three – that dream has gained power. My husband and I have spent many days staying at the ocean, and still the idea of living, writing, and creating there sounds ideal.

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Benlysta Injectable Weeks 5 & 6

The last two weeks have been uneventful as far as the Benlysta and immune suppression issues go. No sore throat, no sinus congestion! I have my fingers crossed that will continue. One peculiarity I noted is that I have felt cold for 48 hours or so after each injection. My temperature has been only slightly elevated for the first day- in the low 99s – and I have taken an extra tylenol and let it pass.

The biggest lesson I have to learn with this process is how to manage the demands on my energy. So much of that feels like it is out of my control – kids constantly need/want something, the projects at work are constantly piled up. My ability to get “ahead of the airplane” and intentionally plan my activities is limited, especially when I am starting most days at a deficit.

I am taking to heart Toni Berhard’s advice to plan what you think you can get accomplished and expect to do only half of it. With a more reasonable expectation, I am able to meet the mark more often, which makes me feel more capable and in control of my surroundings. (This mainly applies to my personal life. My boss is definitely expecting more than 50%!)

For example, the weather last weekend was gorgeous in Seattle. The roses in my yard have been neglected since the fall when rainy season began in earnest. My youngest and I went out and pruned back my favorite rose bushes and got rid of the “raspberry” I got at the local hardware store. It was a tiny task, and we didn’t get to ALL of the roses in this one shot, but it is encouraging to feel like some small part of my life is under my control.

DIY Butterfly Wreath

For those of you who have visited my Etsy shop, you know I like making crafty things. The following is an idea I was working on over the holidays.

Several years ago, I purchased a wreath made of paper butterflies for my youngest, and sadly somewhere in our two moves since that time it got lost. I know I packed it carefully, but it never has turned up. It was such a happy wreath and fits so well with the butterfly theme of Lupus that I thought I would try making my own.

It has taken a couple of tries, and I’m not sure I am finished yet. The first try was with a wood wreath form, batting, floral and washi tapes. It sounded much more fun and less sticky than it felt while making it. My second try was with a styrofoam wreath form. It turned out much better. Instructions and photos follow.

Materials: Styrofoam floral mold, uncoated (silver) floral wire, natural muslin ripped in 1.5″ strips, raffia or twine, paper butterflies (approximately 40), and tape or hot glue.

Tools: Wire cutters, jewelry pliers, hot glue gun (if desired).

Tie uncoated floral wire around the wreath at approximately one-inch intervals, twist sides around each other to hold. Wrap the wreath with ripped strips of natural muslin. I love the texture and imperfections in natural muslin, and it rips evenly to create a nice raw edge.

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The wreath is tied at the top with raffia, both to hold the end of the muslin in place and for hanging the wreath. Twine would work just as well, but I had the raffia handy in a natural kraft brown color. I did not see a need to glue or otherwise secure the muslin, but you certainly could.

Next, I trimmed the pairs of wire to staggered heights – one high and one low in each pair – to create some depth. The ends were curled with jewelry pliers and bent to create a flat surface for the butterflies.

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The butterflies were attached first with masking tape to test out the design.

The butterflies are cut from two different sheets of heavy paper, one a glittery cream color and one a textured parchment color, using a Fiskars squeeze punch. I mounted them on both sides of the paper for four different butterfly variations. The differences are a bit hard to see in the photos, but the effect in person is nice.

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Wires were bent and staggered to look like a flock of butterflies taking flight. The end result was a lot closer to my vision:

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The whole thing took a couple of hours start to finish. I thinking this could have some neat variations with paper colors, dying the muslin with coffee or tea, or inking the butterflies.

 

Benlysta Injectable Week 4

I’m getting used to the injections, though I swear they are taking longer every time. I counted 13 seconds to complete the injection, which is approaching but still under the 15 seconds listed in the instructions.

I deferred my fourth injection, just like the second, to give my immune system a chance to shake whatever viruses have been lingering. This week was my fourth injection, but the sixth week using self-injectables.

I have had a sinus infection that did not want to let go. My doc thinks this prolonged “cold” is not a reaction to the injection itself, but more likely that with the weekly injections the levels of medication in my body have been more consistent than with the infusion, and are keeping my immune response more consistently suppressed. This has been a good thing so far for my lupus symptoms – I am hardly taking any pain killers and overall my energy has been increased – but appears to have allowed whatever microorganisms I am fighting a bit more free reign. If it does not improve, I will have to consider other possibilities. Going through the rest of my life with a constant upper respiratory infection does not seem like a viable option.

My doc suggested the option of going back to the infusion, but I am not ready to do that just yet. I had to plan my schedule around infusion day and it was costing me a day of sick time every month – the same rate at which I was accumulating it. I like the security of having a bank of leave building up so it is available for when I get “really” sick.

We Survived the Holidays!

Sort of.

It really depends on how you choose to define “survive.” In my case, survival typically translates roughly as the ability to continue putting one foot in front of the other. By that definition, the holidays this year were a huge success.

We had two challenges awaiting us in December. The first we knew about – a month-long parade of friends and family. The second we were not anticipating, but you could argue that we probably should have: winter cold and flu season entered our house in the first week of December and did not leave for a month. With school-age kids, out-of-town guests, and my suppressed immune system, illness probably should have been predictable. These two challenges combined for a hefty workload at depleted energy reserves and very little time to recover between events.

Despite our best and repeated efforts to gently set our boundaries and limitations, I think both adults in our house exited December thinking something to the effect of “what was that?” and “we are never doing that again!” I have a vague recollection of saying the same thing last year. No matter how carefully we figure ahead of time what we can actually do, we often feel pressure to push it just a bit farther, and we usually do.

In early December, we made what we thought was a proactive decision to cancel our Solstice party, since we were both sick the weeks leading up to it. We did anticipated that we would not have the energy to spend hours in the kitchen cooking, on our feet socializing, or cleaning up afterward. Reducing that workload seems like just a blip in retrospect. There was still plenty of cooking, cleaning, and socializing even without the party.

The tendency to “push it” hurts a little in the short term in the way of crankiness, pain, and fatigue, but its long-term effect is to set us up for being behind the power curve when the new year starts. Kids go back to school schedules, I go back to work, and it seems that everyone expects us to return well rested and raring to go. We have missed our window for “recuperative” time for the past several years. After we do that, it is a challenge to recover with the demands of real life competing for our time.

I was recently revisiting Toni Bernhard’s page on Psychology Today. Toni fell ill more than 15 years ago, and her writing has been a comfort to me since I got sick. In a post titled “Pacing: The Chronically Ill Person’s Best Friend” from June 2016, she recommends deciding “what you can comfortably do and then only do 50% of it.” Perhaps that should be my New Year’s Resolution: I resolve to only do 50% of what I can do!

(The sound you just heard is my husband laughing…)

If there is a silver lining here, despite the challenges this holiday season, I think we were making better decisions than we have in past years. We are learning each time around, even if we don’t quite hit the mark. As we go forward, we have to try to match our limits to our abilities and to do it a little better each time around. We might get there eventually. One step at a time.

 

 

 

Benlysta Injectable Week 3

Okay, already. I am getting tired of the cold, dreary weather keeping everyone cooped up inside. More than that, I am really ready to not be sick. I’m pretty sure I could have said that any day of the past several years, but I mean it this time in the acute sense. It seems that my household has been fighting one virus on rotation after the next and as a result we have all been sick for the month of December. I is somewhat comforting to see it is not just me that is affected, so there is a chance the medication is not making me that much more susceptible, but still…I’m ready to be done with it.

I wrote in my Week 2 update that I had to defer the injection due to an upper respiratory infection that started just days after my first dose of the self-injectable. This week was the third injection, and the third week I have acquired a new-ish sore throat a day or two after the injection. It is starting to feel like more than coincidence. This sore throat kept me up last night. I got about two hours of sleep, and then gave up and watched Downton Abbey until it was time to go to work. I have felt strangely high-energy since, almost manic, but in a productive way. I got bills paid, insurance EOBs filed away, wash folded, and even a few laps in on the elliptical. Somewhere there must be a crash coming, but it has not made its appearance yet.

The sleep deprivation did make the day interesting. I am sure I let the dog out at one point – I have memory of doing so – but about five minutes later I was convinced I had not let her back in. I went outside in the snow looking for her, only to have the kids tell me she was inside on the couch. They got a good laugh out of that one.

The trend of sore throats and sinuses seems to lead to a handful of possibilities:

  1. Kids home from school, house guests who have traveled in from other locations, and generally being cooped up in common spaces have brought at least three distinct different viruses into the house.
  2. My immune system did not sufficiently recover from the first infection, and the subsequent injections weakened it just enough to let the virus gain back some strength.
  3. This is a reaction to the injection itself. Stuffy or runny nose, sore throat, and cough are all common side effects listed on Benlysta’s consumer site. It also lists trouble sleeping as a common side effect, though since that has only happened once so far, I will keep my fingers crossed that it is an outlier.

So far it’s a mystery! But hopefully not for long. More news next week.

Benlysta Injectable Week 2

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A shell at magic hour next to little birdie footprints in the sand.

My doctor advised one week off the Benlysta to recover from the cold I developed immediately after the first self injection. This week, which should have been my third injection, was therefore my second.

Things I learned this week:

Despite the mentions of the “second click” on the instructions and accompanying diagram, the indicator that the injection is finished is that the indicator bar stops moving. I was focused on the “second click” and must have pulled the needle out a little early. The injection site stung for several minutes afterward, which it had not the first week. I did not notice any lingering effects.

The family was on Christmas break this week. We spent the time staring at a winter ocean next to a wood fire. If my energy level was low due to the medication, I did not notice it affecting me. A walk on the beach was the one possible exception. We enjoyed one nice afternoon walking along the shore, looking at shells and bird footprints in the sand. When my internal monitor made the first twitch – more of a suggestion than a demand – that I might be getting tired, we turned around and walked back. As a result I felt like I got some exercise without being exhausted on the back end.

Benlysta Injectable Week 1

This week was terrible, but I don’t think it was due to the Benlysta. In the days following the injection I felt fatigued and run down like I typically do after an infusion, and it didn’t get better as the week went on.

My hope is that on the lower dose injectable my typical symptoms will be less than they were with the infusion. I tried to take it easy for the first three or four days after an infusion. I planned my life and my workload around the monthly visit to the clinic. When I pushed myself it tended to prolong the fatigue and brain fog. The problem with recovery taking the same three or four days with the injection is that only leaves a couple of “normal” days before the cycle starts over the next week. The start last week was not encouraging.

However, as I got to Thursday, I developed a raging sore throat, and things started adding up. My youngest had the sniffles for most of the week, and a tiny temperature elevation, but was otherwise pretty normal. My guess, after spending several days strung out at work and the last couple of nights up coughing, is that a cold came home from school and I was incubating it on the day of my injection. I wasn’t symptomatic that day, but it caught up with me shortly after.

I’m not sure how I would have prevented this, since I wasn’t experiencing any symptoms of infection on the day of my injection. It does mean that I won’t be taking my next dose on time to give my system time to clear the virus. More data next week, I suppose.

Benlysta Update

I survived my first self-injection. The anticipation of jamming a needle into my thigh was the worst part. It took me a few minutes getting up the nerve to do it. No golf balls though!

What looks like a needle array in the instruction pictures is just the needle guard. It’s one needle, similar to the Humira injection I was on a few years back. Unlike Humira, instead of a plunger/trigger that spring-activates the needle, the process of pressing the injection container injects the needle. I really like the trigger activation of Humira. It made it feel less like I was injecting myself. Though again, anticipation was the worst part. I barely felt the needle and the injection itself. The packaging advertised a maximum of 15 seconds to complete. This one took 7-8.

The big question for me is: how will the smaller more regular dose affect my energy level? I had to work from home for a couple of days each month following the infusion. My energy was low and my brain felt like mush when trying to communicate with other humans. Just could not follow full-speed conversations. Catching up on administrative tasks from home worked really well. My hope is that the smaller dose will have less of an impact.

Benlysta Arrives

My first shipment of Benlysta self-injections delivered this week. I’m so excited. I worked from home all day so I could be here when the box arrived. It took until mid-afternoon for UPS to ring the doorbell. It can’t be normal to get excited about a delivery of needles, especially at this time of year when the real gifts and goodies start coming by mail.

Benlysta has been a game-changer for me. After years of trying one medication after another – and often one more pill in addition to all the others – to control my symptoms, I finally have a Lupus diagnosis and a medication targeted specifically for my disease. For the past couple of years, I have planned my life around infusion days. They became a monthly event: drive into the city, spend an hour hooked up to IV, drive home, followed by a couple of lethargic days teleworking. Despite the inconveniences, Benlysta has gradually allowed me to reduce other medications, including prednisone and pain killers, without exacerbating my pain and fatigue. I can’t say that Benlysta has “given me my life back” or that things have “returned to normal”, but it is allowing me to start taking back some control over my day-to-day symptoms.

Over the past few years, the increasing toll of fatigue and the relative inactivity of a desk job have put me way behind the power curve. I can feel it in the softness of my body, lack of stamina, and decreasing strength. I do not expect a miraculous recovery, but on my current medication regimen finally there is a little bit of space between me and the bottom of the hole. I can exercise without feeling like I am moving through quicksand. I feel like exercise is starting to help me improve, rather than simply increasing the toll on my body.

And what stands between me and continuation of this trend is an injector pen. With an intimidating needle array. Doesn’t appear to be just one needle. It looks like several of them in a line. The instructions say it could take up to 15 seconds to complete the injection, which sounds like a darn long time to be voluntarily squirting something into the fatty tissue of my thigh. I’m picturing a golf ball sized lump after injection. Still, when given the option to inject in the comfort of home, eliminate the drive, and save my few precious hours of leave, it’s enough enticement to give it a try.

If it does leave a golf ball on my thigh, I will be taking pictures…