May is Lupus Awareness Month

I am admittedly a little late with this post. It has been on my mind but I have not found the time to put fingers to keyboard…because….life?

This month was a great example of the choices I have learned to make since my diagnosis. I have been working on a project at work. It has been a ton of work over two years, fraught with pitfalls and roadblocks. There were times I thought we were just stuck. There were times I thought that banging my head on the desk sounded more productive than the project had been. Then at the beginning of the month, it kicked into overdrive. The right person got the right information and all of the obstacles were removed. For two solid weeks, my colleague and I dropped everything else to get our project across the finish line.

I only worked my regular eight hours, but was so mentally engaged and stretched, I came home exhausted. I had horrible headaches and my throat ached (one of my clues I have pushed myself too far). I noticed, at times when I went to rest my head on my hand, that my forehead and cheeks were flushed and warm. My elbows ached from hours of typing and phone calls, and my fingers were numb and tingly. I went to bed around 6:30 each night, and had very little time or energy for my husband or kids. It was a choice, and I knew that going in. I know my limits now much better than I did a year ago. I knew I could only stand those eight hours and then I had to come home. I knew that pushing it would set me further behind the following day, so at the end of each eight hour shift, I turned off my computer and left.

My work is rewarding to me. In addition to paying for my family’s daily needs, it provides me with a sense that I am contributing to society in a positive way. The project we finished is something I believe in. I knew, when we got the go-ahead a couple of weeks ago, that I would not have room for anything else on my plate until it was done. Even this post had to wait its turn. Luckily, I have a family who believes in me and is willing to pick up some of the slack when mom/spouse heads to bed two hours early.

Lupus has in many ways become my life. It is my silent partner – the one I didn’t choose. Last year, I participated in a Make Your Mark fundraiser through the Lupus Foundation of America, and raised over $800 via sales from my Etsy site and from direct donations to the Lupus Foundation. If you have the bandwidth – and I certainly understand if you don’t – please consider donating for Lupus Awareness Month. You will assist in education, research, and support for the approximately 1.5 million Americans with Lupus. It has already made a positive difference in my life, as in so many others. Just think what we can do in the future.

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Watching for the Signs (or in this case not…)

When I went to bed last night, I wasn’t sure I would be going into work today. I was so tired that I went to bed at 7:00. Not “go to bed” as in reading for an hour to make my eyes tired, but “go to bed” as in right off to sleep.

I woke up in the morning feeling blah. A little dragged down but not horrible. My commitment to myself when I started this grown up and responsible part of my work life was that if I felt bad when I got up, I would go through the process of getting ready and see if I felt better. Sometimes it works. Playing some energizing music and getting joints moving in the morning does often help improve how I feel. By the end of my getting ready process, I still felt…blah…but not bad, so I kept going.

Getting the dog outside was a challenge. It should have been a sign when she scampered off and wouldn’t come to me that something was off. We think she came from an abusive home. She is highly reactive to loud noises, swearing, body language, and tone of voice that might indicate anger. I had to follow her down to her hiding spot in the basement (did I mention I still felt…blah?) and bring her upstairs by her collar, which she hates. But I was running late for work and she was not helping.

I made it through the coffee drive through and the drive to work, though I parked so far away from the window that I could barely reach the coffee, and a car appeared out of nowhere (I swear!) in my rear view mirror when I was making a lane change. The signs were not improving, and I knew it by the time I got to the parking lot at work.

My bags would not come out of the car. It was more of a wrestling match than usual, but I got them out and assembled with coffee in hand. As I walked toward the building, I considered turning around and going home, but I knew I had already shown up on several security cameras, so I kept going. After I checked in at the guard station and was heading to my office, I thought again that I really should turn around and go home. It would have been the smart thing to do. But I was already at the building, and I thought the guards might make a comment if I left – it would have been joking and not mean-spirited – so I kept going. I told myself that I would leave after my 8:00 meeting if I didn’t feel better, knowing that I had probably just missed my chance.

I stayed past my 8:00 meeting, because I really needed IT to finish working on my computer, and I was hoping to [fill in the blank] while I had the chance. My phone rang an hour prior to quitting time with a high-priority last-minute change of plans for the next morning. By the time I got home in the afternoon, I had no voice, a very sore throat, and no good option for missing tomorrow’s meetings.

The sore throat seems to be my first definite signs of a flare. Some people report that it feels like they are getting the flu when they start a flare. I don’t tend to run a fever or get muscle aches, but for the past year the sore throat has been a consistent sign that I have pushed too far. It doesn’t go away overnight. It typically takes several days of rest before I feel better. Unfortunately, I do not see an option to miss my commitments tomorrow as long as I am able to drag myself out of bed in the morning, which means prolonging the strain on already stressed systems and likely the recovery period too.

So how do you tell if the signs are telling you to slow down? And are they caution signs or red lights? If you are like me, you have learned to push through minor discomfort on a daily basis and it can be hard to tell the difference between “speed zone ahead” and “watch out for the cliff.” I’m not sure what the right answer is, but I am pretty sure I should have turned around and gotten back in bed after I saw more than one or two of them.

A Heroine for Chronic Illness?

Most of my reading these days has been non-fiction, but there are times when I want to escape this reality and explore other options. I have struggled to find authors who speak to me as a woman, and especially one struggling with chronic illness. I Don’t Know How She Does It by Allison Pearson is one of my favorite contemporary novels, and it appears to have spawned some look-alikes: high performing woman must choose between work and family, eventually choosing to give up the guaranteed paycheck for a life in the country/part-time work in the suburbs/starting her own business to spend more time with her children.

The most recent novel I read was disappointingly predictable in following this pattern. The protagonist decides she has to start earning more after her husband loses his position with a law firm and has to strike out on his own. She signs on with an ethically challenged tech company (which in my opinion would have been the more interesting plot line to explore), but the biggest struggle for her is that she misses the smell of her kids’ heads, their goofy innocence, and watching them as they reach development milestones. She dislikes that her nanny is experiencing those things instead.

Hold on. Her nanny?? I don’t know anyone who can afford a nanny right now.

I am trying to find a novel that explores the tension between work, family, and self in a more relatable way. Some of the self-help books I have read on coping with chronic illness are far superior to fiction in this respect, but are still being written after the challenging choices have been made. They are written with the relief of resolution rather than the angst of choosing between imperfect ends. The right path is much more clear when it’s in the rearview mirror than when navigating your way for the first time. Hindsight is 20/20.

The stress of my job has lately been consuming all of my energy, both mental and physical. My employer has made several accommodations for my health condition, for which I am very grateful, but these accommodations do not remove the expectation that my team and I accomplish more than we are able to with the resources we have. My organization is enamored of the idea of “stretch goals” – that is, whatever I say we can do, they want me to stretch myself for more. I am already stretched as far as I can go. Next stop is the breaking point.

A recurring fantasy for my husband and I is to throw in the towel, sell the house, move to the coast or the country, and start a small business of our own. We have explored several of these ideas over time: a bed and breakfast, a yarn shop, a bakery/cafe, or a gift shop with handmade and locally sourced items. We both write and play music, and could record, publish, or perform. We have a lot of latitude to build our own creative future.

It sounds great in theory: leave the stress of the aviation industry behind, escape the crush of the big city, and take our lives into our own hands. We have the funds available. We could make the leap. Except that the leap is the easy part. If I left my job, my medication alone would be well above what we could afford (currently covered by my employer-assisted health insurance). Then there is the consideration that with my illness I may not physically be able to work day in and day out, as a small business would require. I am not able to stand for long periods of time, and any of the ideas above would likely necessitate doing so. It is a mental puzzle to try to figure out how we could make it work.

So I am looking for a book (or two or ten…) that explores this struggle. A book for an honest-to-goodness mother with young children for whom the desired solution is not returning to the life of a stay-at-home parent. A book that illustrates the day-to-day challenges of living with a chronic illness, a job, and a family.

Any ideas?

 

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.

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.

 

 

 

Thirteen Days of Lupus

There are 13 days left in May, and 13 days left of my Lupus Awareness Month fundraiser.

For the final 13 days, here are 13 Lupus facts:

13. There are an estimated 1.5 million Americans currently living with lupus. That is approximately 1 out of every 220 people.

12. Lupus has no known cause and no known cure. There seems to be a genetic predisposition for Lupus, but genes alone do not determine who develops it. Researchers believe that many factors trigger the disease.

11. Lupus is an autoimmune disease, meaning that the body’s immune system attacks otherwise healthy tissue including joints, muscles, and skin. Lupus also has potential to do serious damage to major organs such as heart and kidneys.

10. Lupus is difficult to diagnose. People with Lupus experience symptoms differently, and the symptoms often mimic other diseases. It takes an average of six years from onset of symptoms and four different health care providers to accurately diagnose Lupus.

9. First degree relatives (parents, siblings, or children) of people living with Lupus have a six-times greater likelihood of developing the disease.

8. The average annual direct and indirect costs incurred by a person with Lupus can exceed $21,000. This is a higher average cost of illness per person than for rheumatoid arthritis, heart disease, diabetes, hypertension, or asthma.

7. In a recent Lupus Foundation survey, more than half of people with Lupus report that their symptoms have limited their ability to work full-time. Additionally, nearly 3/4 of caregivers report that caring for someone with Lupus impacts their work productivity.

6. Sensitivity to ultraviolet light, which is present in both sunlight and artificial light,  affects as many as two thirds of individuals with lupus. Photosensitivity may cause fever, debilitating fatigue, joint pain, rashes and other symptoms.

5. People with lupus take on average nearly eight prescription medications to manage all of their medical conditions including lupus.

4. Nearly 3 in 4 people with lupus surveyed (76 percent) said fatigue limits their ability to participate in social activities.

3. About half of all people with lupus will experience a serious infection during the course of their disease.

2. As many as 60 percent of people with lupus will experience some type of memory problem, such as recalling names, dates, and appointments, or balancing a checkbook.

1. With current methods of therapy, 80 to 90 percent of people with non-organ threatening lupus can look forward to having the same lifespan as people without lupus.
For more information about my Lupus Awareness Month fundraiser, please visit support.lupus.org/goto/elfinjoy.

Lupus: Origin Story

I was diagnosed with systemic lupus erythematosis (SLE or Lupus) in early 2016. Lupus is an autoimmune disease in which the body’s immune system causes inflammation. It can affect any organ system in the body. My diagnosis followed several long years of increasingly painful and frustrating symptoms. Though Lupus is not a “good” diagnosis, it gave me a profound sense of relief to know that this is not all in my head, and that my condition finally has a name.

Looking back the patterns are easier to see but they were not obvious as I encountered them. My experience is fairly typical for people with Lupus. According to the Lupus Foundation of America, it takes an average of six years from onset of symptoms to correct diagnosis. More than half of people are misdiagnosed at first, and it takes an average of four health care providers to find one who correctly diagnoses Lupus.

The first symptom I noticed was an overwhelming fatigue. For several months, I would come home from work and fall asleep on the hard floor under the kitchen table. I had two young kids at the time, so I was not sure whether this level of fatigue was normal or not. I was diagnosed with a thyroid deficiency.

Then my fingers started losing circulation when I drove my car in cold weather. I lived in Montana at the time, where cold weather occurs at least six months of the year. My fingers turned white and it took several minutes in warm air for the blood flow to start again. This is called Reynaud’s Syndrome. It can occur on its own, but it also accompanies many autoimmune diseases.

After that, my joints started aching and swelling. First my toes and the balls of my feet, then my hands, knees, and elbows. On bad days, my shoulders and hips are symptomatic as well. X-rays showed no joint destruction, which confused diagnosis further. The pain would wake me up in the middle of the night, after I had finally managed to fall asleep.

My wonderful rheumatologist patiently started medication regimens to attempt to find one that worked. Prednisone was a staple to control inflammation, and for a long time it was the only thing that was effective. I had a core of seven medications with an eighth and sometimes ninth that was rotated through. This number also is in line with national averages. I tried methotrexate which felt like poison (pretty sure it is…). I tried Humira with no effect and Remicade, which made me feel like I had a bad case of the flu. Each attempt took 3-6 months to evaluate the effects, which to this point were negligible.

A fluke accident led to a breakthrough. My doctor was in a horrible car accident which took her out of work for months. I was transferred to one of her colleagues. He looked at my list of symptoms from a fresh perspective, and was convinced I was a better fit for connective tissue disease than the working diagnosis of some form of autoimmune arthritis. He recommended specialized blood work to test his hypothesis; it came back with a very strong likelihood of Lupus.

Shortly thereafter, he started me on Benlysta. Similar to Remicade, Benlysta is a biologic drug administered intravenously. It is the first and only drug created to-date to treat Lupus specifically. My doctor warned me that I may not see immediate results, but like the other treatments I had tried, we would try it for six months and evaluate the effect at the end.

It has been more than six months now, and I believe that Benlysta has been an improvement in my quality of life. I do not feel back to normal by any means, but I have been able to reduce other damaging medications from my daily regimen. My dose of prednisone, which can lead to cardiac issues and osteoporosis with prolonged exposure, has been reduced to a quarter of what it was one year ago. I have also been able to reduce my use of pain killers and their attendant risks and side effects. These are positive changes, and at this point I will take any small improvements I can get.

This year I am marking Lupus Awareness Month by participating in the Lupus Foundation of America’s Make Your Mark™ program. I am hosting a Lupus Awareness Month Candle Sale on my Etsy site to raise critical funds to improve the quality of life for all people affected by lupus through research, education, support and advocacy. Any funds donated directly through my Make Your Mark page are tax-deductible. I would greatly appreciate your support.

For more information on my Make Your Mark fundraiser, please click here: http://support.lupus.org/goto/elfinjoy

For Lupus Awareness Month facts, please click here: http://www.lupus.org/action/lupus-awareness-month-facts

For my Etsy store, please click here: elfinjoy.etsy.com

Thanks for reading!