Scary brain stuff

Before Thanksgiving I had a Benlysta infusion that triggered many neurological and cognitive symptoms. It was scary and still is. My rheumatologist ordered a brain MRI which thankfully showed no structural abnormalities. I saw her yesterday and we're testing for CNS lupus. That involves ANA labs and neuropsych testing once insurance approves.

If there is CNS involvement, which seems likely at this point, I'll stop Benlysta and start something stronger. Like everything else in autoimmune disease, this involves a trade off: greater risk of infection and more side effects for less Brain Wrong (my highly scientific term).

I told my Sweetie what's going on, that was hard. I don't want him to see me primarily as a sick person or to worry. He's been very supportive. I haven't told him my theory that autoimmune disease attacking my brain makes me an auto-zombie, it feels too soon.

Ella snuggles have helped

I had a Benlysta infusion yesterday and if that kicks in I'll start feeling better tomorrow or Friday. If not, eh, I will muddle through.

Positives, because I like to end on an up note: 

• I have a fantastic new rheumy
• I still have friends despite being sick most of the last 3 months
• Sweetie--I can't believe my luck
• My mom, who's been great.
• Internet knitting friends :)

Tiny Forest's Debut

I finished five tiny trees in time to gift them to my mom yesterday. She liked them very much and laughed. She also thought the pink tree was a lightbulb so take her reaction as you may. Better photos will be taken in their forever home. Maybe.

Presented for your amusement

The last tree was knit while playing pub trivia and in the stark light of day it has a distinct yet inadvertent Seahawks/Sounders vibe.

MLS champs get their own tree?

I used the Pint Sized Pines pattern. The only change I made was to work the Double Cabled Tree's decs in Row 24 as *p1, k2tog, p1, ssk* around so they matched the direction of the cables they perch atop. Because yes, I do notice stuff like that ;p

Summer's Workshop

I've been getting in the holiday spirit today, crafting to music. I started with Christmas music but listening to it alone made me sad. And it didn't fit my mood, so classic rock it was!

A previously knit angel ornament

Last night I knit a cabled tree ornament. Some stitches were wonky so it got a bath before bed. It was still wet this morning and I stuck it on the baseboard to dry. I finished knitting a second angel today which received similar post-bath attentions.

Speed drying rack

My couch work zone

I also finished two decoupage notions tins.

(L) stitch markers, (R) needles and waste yarn

The cabled tree gets a cork trunk. Here I'm testing the stability of used corks. A meat cleaver came in handy to shorten them.

 The first tree (of 3+) and angel are now done:

I painted this cork trunk to obscure WASHINGTON printed around its base. Brown watercolor plus Mod Podge, then a thin coat of MP, worked very well.

Last week I knit a bird for Ella and stuffed its head with catnip. She seems to approve.

Thanksgiving!

I've felt not great this week, including on Thanksgiving, despite Benlysta on Monday. Or maybe because of it? I did enjoy the day, spent with my Sweetie and a friend. It was perfectly low key.

Spatchcocked turkey

I helped with the pie

The cook's treat (leftover pie crust rolled with cinnamon sugar)
was not a success. I neglected to set a timer.

All the food was delicious, the company pleasant, and the long weekend is very welcome. I hope you all enjoyed your holiday, or ordinary Thursday, as well!

Happy Thanksgiving

This has been a difficult year on many fronts. Through all that I've been incredibly grateful for friends, new and old. For a medication that gives me enough function to enjoy life. For a fulfilling volunteer job, especially now that some friction has been resolved. And for a sweetheart who is more than I could have asked for.

I wish you all a happy Thanksgiving, however you spend it. And love and good company always.

Happy Thoughts

It's been a week. I won't dwell on my fears. Instead I'll share some positives.

Last Monday I visited a friend in Centralia (85mi south). She made me two beaded shawl pins to match my Watermelon Daybreak shawl. I knit on it while we sat together in her husband's hospital room this May.

I've worked hard to make a good life and to become the woman I am. I'm lucky enough to have assembled a team of friends who genuinely like me and I even have a sweetheart :)

Plus I live in a city where even the sidewalk gardens can be motivational:

Hang in there

Busy Few Months

I am so used to quickly adapting to life changes that I surprised myself with how much has happened recently. Let's break it down:

June: holy wow, Benlysta is working!
July: Summer has a boyfriend
Aug: Jake diagnosed with lymphoma; support group co-leader quit
Sept: Jake euthanized; family gathering in Pennsylvania
Oct: never-ending cold; my 40th bday; new co-leader

So, yeah, a lot going on. I've stayed productive, made and kept friendships, and my fella is still around :D I've been struggling with high pain some days but managing well despite that.

Friday night prefunk with a friend

Whale Baby Sweater

I traveled to visit family a few weeks ago. One of my trip must dos was to finish the Whale Baby sweater for a cousin's November baby. A nasty cold and reknitting the button bands slowed me down, but I did finish! Even if our grandma questioned a blue sweater for a baby girl ;)

It fits already!

The recipient and everyone else loved it. I knit a size 12mo so we'll have to wait another year to see action shots.

This was a tricky project because it uses super soft baby wool. Normally stranded colorwork is done with sticky wool. The wool's stickiness holds it all together and evens out tension. I'm very proud of my ability to get a nice result with the materials used, something I doubted I could do. It's fun to see the result of 20+ years of knitting.

The reverse side: so proud :)

I love nurses

I went for a Benlysta infusion today. It went very well, and I enjoyed catching up with Awesome Infusion Nurse. I told her about my rheumatologist saga. Mine is still out on medical leave, with no idea if or when she'll return, so I need somebody. Options on Medicaid are limited, and most rheumies want positive labs (which I don't have).

My PCP met the clinic's new rheumies and suggested I see one of them. Weeks later and something was holding up the works. I called and nothing changed. But Awesome Infusion Nurse spoke to the scheduler today and voila! I see a new rheumy on Wednesday. That's in two days, which is astonishingly quick.

Today's infusion was located in a sunbeam :)

I'm still sad over losing Jake, but adjusting. The house feels emptier without him.

Grief Salad

Jake was put to sleep on Sunday at home. Holding his limp sedated body then watching the pink leave his nose was so hard. I'm going to miss my fluffy buddy for a long time

I made a big bowl of bean salad on Saturday so I'd have something easy to eat this week. When my head or heart are full I forget to eat or can't be bothered. This salad doesn't even need heating.

Grief Salad

2 cans black beans, drained and rinsed
1 can garbanzo beans, ditto
1/4c couscous, rehydrated in 3/8c boiling water
3/8c white wine vinegar
~1/8c olive oil
2 bell peppers, chopped
1 medium red onion, chopped
2 ears fresh corn, sliced off the cob, or frozen white corn
chopped cilantro to taste
salt and pepper to taste
hot sauce to taste
Optional: juice of half a lime (reduce vinegar accordingly)

Serve over arugula if desired. The flavors meld overnight and it's even better the next day. If you have extra vinegar at the bottom of the bowl try adding 1/4c more rehydrated couscous.

Nothing in this recipe is hard or fast. I used frozen corn this time and kept adding until it looked like a good amount. If you've been too sparing on salt and hot sauce it will taste sad and bland and you may begin to question your life choices. Do not fear, continue seasoning and all will be well.

Six years, 400 posts

Happy sixth birthday, blog! I started this blog to share sewing projects plus some random thoughts. But my health got worse--hello autoimmune disease--so that's become the focus. As interests and hobbies are stripped away I realize just how important people are. Any energy left after doing the things that need done, that's how I spend it.

But 400 posts? I had no idea I had that much to say. I was reading some old posts and realized that I'm pretty much the same person now. The more we change, eh? Maybe I've written myself out--I can't think of anything else to say ;)

Love and Loss

Part of caring is having to grieve losses. Jake saw the vet two weeks ago for what turned out to be lymphoma. While he's still doing well on prednisolone I know it's only a matter of time. I'm alternating between enjoying normal time with him and worrying about the other shoe dropping. He's still breathing and eating well though. There was some trouble when he discovered the bitter reality lurking at the center of pill pockets. But we've successfully weathered that speed bump*.

To balance this out, things continue well with my sweetie: it's been observed that I am twitterpated. I half jokingly expressed concern that I've developed an unhealthy attachment to him, because I will be sad if he's gone. He replied that he's not going anywhere. And this is a man whose words and actions match!

I've also been having a small autoimmune flare, with increased joint and muscle pain and costochondritis. Yesterday was infusion day so hopefully that kicks in soon. I've had an intercostal muscle spasm since last Tuesday and would very much like for that to stop. It makes breathing hurt.

Jake's always had expressive ears

* I gave him a few empty pill pockets to break the mental link between them and nasty bitter tastes. He still gets pred in a pill pocket. But the gabapentin capsules are pill pocketed then he's forced to swallow. That's not his favorite but it's easier than forcing the plain capsule on him. And better than him crunching down on the capsule--blech!

Chronic Illness Portmanteaux*

There is specialized vocabulary associated with chronic illness. Painsomnia comes immediately to mind: a combination of pain and insomnia. It even has an Urban Dictionary listing. Or when you randomly start itching, those are the histameanies. Histameanies and I go way back and they're the reason I always carry Benadryl.

Maybe you've heard of hangry (hungry-angry) but paingry was new to me. And watch out for hangry paingry! A friend introduced me to the term pain coma. That's where you hurt so much you become non-functional. I lose the ability to make decisions or speak during pain coma, which is bad news if I'm out and about. Chronic illness forces you to learn just how far you can push yourself. I try to always have cash, for example, in case I start to crash and need to pay for my meal or drink and skedaddle.

There's also much discussion of spoons. I have energy spoons, joint spoons, braining spoons, social spoons, talking good with words spoons, and so on. Sometimes I wonder why I'm so fatigued on a particular day. Then I remember that oh yeah, I'm in big pain. Most of the time I forget and can happily go about my life. Happy means the same thing in both the chronic and healthy worlds.

* Why is the word portmanteau so long? Shouldn't it have an abbreviation for itself?

Jake Update

Jake is doing better! Prednisolone is magic: it shrunk the nasty thing growing in his nasal passage and throat. His breathing sounds almost unobstructed and he got his squeak back :) It's also boosted his appetite so he's gained weight. All the treats he's getting certainly help!

More treats pls

I don't know how much time steroids will buy him but I'll take it. Last weekend I thought he had about one good week left. Now it may be more like weeks. I'm taking advantage of that time by doing perfectly wonderfully average things with Jake.

I knit a sweater

During the International Games of Sportsing Endeavor (please don't sue me IOC) knitters knit. I joined in again this year with grand plans and high hopes. I stumbled a couple times but recovered to finished this sweater--poorly photographed by me.

The sweater

Jake helped

❤️ Jake Break: Jake is doing very well on prednisolone! (the only corticosteroid I didn't have on-hand ;) A brief Friday night breathing obstruction had me worried enough to contact the at-home vet about euthanasia. But tweaking the steroid dose has him doing better than a week ago. Go Jake! ❤️

My brain has been only halfway functional due to kitty-related sadness and stress. But my treat-dispensing abilities remain intact which is what matters.

The sweater is linen which is unfun to knit with. But will feel great in hot weather, once I break it in. Which is a euphemism for beating the snot out of it until it stops being able to stand on its own. I'm not thrilled with the hem ribbing and may reknit it...someday.

Oh sweetie

Two friends said that yesterday when they learned Jake is dying. He has aggressive lymphoma and a few weeks left. Prednisone has perked him up and improved his obstructed breathing, which is a relief. I'm aggressive about palliative care, and won't let him suffer or linger.

But to have people who care about me and offer help is amazing. When I was at my sickest I couldn't imagine this much improvement. I couldn't imagine rebuilding my social life. But I have. I no longer feel fragile: I am ready for what life throws at me.

Baby Jake with Elwood

Jake (the cat) is sick

Jake, my big dumb sweetie

I've had Jake since he was 8 weeks old; he turned 14yo this year. We went to the vet yesterday because I thought he had an upper respiratory infection. He'd lost weight earlier this year but the vet found nothing suspicious. It seemed due to Ella being a food bully. He gained 2 lbs back after I started to police meal times.

Ella denies being a big meanie. If you disagree she'll eat you.

At the vet yesterday we discovered Jake has an apricot-sized abdominal mass. It's not clear in which organ. Plus something not good going on in his sinuses and larynx. And more weight loss, so he's now smaller than he was this spring. The vet took samples of the mass and I'll get the pathology results in a couple days.

The vet is scary

Jake is an official Scaredy Cat and I believe in minimizing treatment for my pets. I said no to nasal and laryngeal scopes, which would have required another visit plus sedation. If the mass is something treatable with pills I will consider that. But no surgery or treatment with more-than-minimal side effects. It's all about his quality of life. Prednisone has eased his breathing a little, which is a relief. He seems pretty happy today. He was definitely glad to be home yesterday!

I'm doing ok, and have good friend support. Maybe I'm too good at dealing with bad medical news. I suspect grief will hit when I know what we're dealing with.

Summer has a Sweetheart

I started dating again in December, leading me to meet such jewels as "Drunk Texter" and "Pee pee pants." I dated someone for a few months which ultimately resulted in a good friendship. I created a hierarchy of dating nos (#1: smelly, #2: boring). I tried out some fun new bars and started to really get the hang of casual dating.

But then one guy made my heart go pitty pat. And it's mutual :) Friends say, "oh, he's cuuuute" when shown his photo. He is kind, smart, fun, cheerful, adorably awkward, and he likes me. My health problems aren't a concern for him and he hasn't been spooked by fun stuff like 24hr urine collection. It's still early but this seems to have real long term potential. Plus he cooks!

Benlysta at 7 months

I started Benlysta infusions in late December 2015. Initially I had unpleasant side effects like insomnia, intense headaches and GI upset, as well as some post-infusion fatigue. The insomnia has improved and I've found a medication that lets me sleep. The headaches faded then essentially stopped, but it took 3-4 months for that to begin. In general I've been very lucky with side effects and no longer even feel fatigued afterward.

For many months I didn't know whether Benlysta was helping, or whether it could help. It's approved for lupus but what I have doesn't fit into a tidy diagnostic box. I'd have days or weeks of decreased fatigue or joint pain, but was that coincidence or the treatment? No way to be sure. There were also weeks or months where I felt like I'd had no treatment. The rollercoaster nature was intensely frustrating.

But at 7 months I can say that I do feel consistently better. I have much more energy: I've made friends and get out many times per week. I can stay awake all day, clean my home, and run errands without hitting a wall of pain and exhaustion. Joint pain has improved enough that I can walk reliably, and I've been taking the bus much more frequently. I've been dating with success. Benlysta has given me hope for the future.

Stump the Endocrinologist

So that happened yesterday. My cortisol is high, but why? Nobody knows. Much blood testing ruled out things but left a bigger question mark. My endo is concerned and determined to figure this out, though.

The next step is a 24 hour urine collection and a salivary cortisol test. They gave me a very large (3L) jug for the former. The fetching hat actually goes in the toilet to collect the urine (it's as yet unused).

Guess how I'll be spending my Sunday. "Hey Summer, want to hang out?" "I can't, I have to stay home and pee. All day." Bummer. Hopefully this only needs to be done once. They do the collection from morning Day1 to morning Day2 so I can't even wiggle it in around weekday stuff :/

But I stopped at the bakery for a special sandwich and some pastries. Tasty tasty self bribery :)

Food (Or, I am Summer's Gut)

My relationship with food? It's complicated. My bored asshole immune system has decided that my gastrointestinal system is its new playground. It literally hates my guts. Nausea? check. Pain? check. Oh hey look, there's an eject button in my intestines? Check.

I've had issues with nausea for a few years but it's gotten worse in the last six months. At times I struggle to eat enough, so nuts or bags of M&Ms are my new bedtime snack. When I do eat I often have pain, to a greater or lesser degree, which makes the whole thing not much fun. The pain is very similar to feeling overfull. I've always disliked that feeling and will happily leave one bite to avoid it. Now, however, I have to push through.

I think my endocrine issues are playing a significant role in this. I return to the Endocrinologist on Tuesday to discuss my lab results. Cortisol was high I know, but endo is tricky! That's why we have doctors ;) Seriously though, I'd love to be medically boring. That would be amazing.

Posh or Not

First impressions are important. No matter what a doctor may have read in my chart, she still forms an opinion of me when we meet. I present as an intelligent, educated, middle class white woman (undereye concealer plays a big role). In short: posh. In reality I'm poor, prefer rock to classical, dropped out of college, and am decidedly unfancy. Just thinking about being posh makes me itch.

Sometimes my "healthy person drag" counts against me, making me seem like a bored, attention-seeking malingerer. The best docs see through that, however, and realize the effort involved in creating that illusion. Having pride in myself shows that I haven't lost hope, that I want to function in and enjoy the world. The best medical professionals take me seriously, accept the contrast between my outward appearance and extensive medical record, and work with me to build a treatment partnership. You don't have to be or look posh to do that.

This day I was looking particularly good :)

Let's Talk About Pain

I'm always in pain; it's a fact of my life. Yet I almost never talk about it. Pain is not relatable, pain is unquantifiable, pain is invisible, and pain is personal. With the war on opioids, pain is also political.

The amount of daily pain I experience is unimaginable to the average person. Yet I'm so used to it that I forget how abnormal it is. The Mankoski scale is a good gauge with caveats: 22 years of constant pain mean my brain and lifestyle have adapted. And pain meds (please don't call them painkillers) don't work on my pain.

Mankoski Pain Scale: 

6 – Can’t be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (Codeine, narcotics) reduce pain for 3-4 hours.

7 – Makes it difficult to concentrate, interferes with sleep. You can still function with effort. Stronger painkillers are only partially effective.

8 – Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.

9 – Unable to speak. Crying out or moaning uncontrollably – near delirium.

If you saw me out and about you'd likely peg me at a 6. My pain is almost never 6. 7-8 is typical. It took me a few years to train myself not to make "pain face." Sleep is always a problem. I often have times when language and cognition* are difficult as a direct result of my pain level. Sudden spikes in pain will knock me back a step or cause grunts or groans.

I cope: I sleep when I can and as much as I can. I distract with music, tv, socializing online, getting out in the world, hanging out with friends. I bounce by attention around online to increase the distraction. When it's really bad I have a drink or two, vape marijuana, or sleep. But alcohol and MJ don't reduce pain, they just make me care less. Other people have their own coping mechanisms because pain and coping are individual.

I've made a good life through a hell of a lot of work. But sometimes I still wonder what it would be like to be pain free. I can't imagine.


*I mistyped cognition, autocorrect fixed it, and I had to stare at the word a couple times before I confirmed that it was the correct word and said what I meant. This is not uncommon.

Mission: Very Difficult

My mission, whether I like it or not, is to get myself to the hospital lab for a morning blood draw. This may not seem like a big deal but I am not functional in the morning. I'm supposed to have the draw asap after waking, however it takes at least an hour for my brain to really come online. My waking time of 10am means I can avoid traffic, though.

Transportation is the main consideration. I live intentionally close to the main medical center, but driving oneself to the hospital is never a small matter. I know where to find street parking around the hospital but not at it. And parking garages are complicated. I'll probably take the bus, less to pay attention to that way.

The stress of trying to predict how I'll feel is one of the big issues in my life. I realized recently that I manage very well, considering this is an impossible task. I have become very good at setting and maintaining boundaries!

Less Angry Eyes

I saw the ophthalmologist today and got some good news. All the eye drops and heating and massage actually started to work, and the oil glands are less blocked! Tthe glands that are still blocked (the majority of them) are showing movement of the blockages. Yay!

The last two weeks have been a medical whirlwind. There was an insurance issue with the Benlysta infusions, leading to a last minute infusion cancelation, another rheumy visit, and a rescheduled infusion. I had a total of 6 medical appointments in 2 weeks, not counting physical therapy. Too much. But it's done now and that feels good.

Knitted Sheep Carousel

I just finished knitting Sheep Carousel, a tea cozy designed by Kate Davies. I used Harrisville Shetland instead of the Scottish yarn the pattern calls for. I have plenty of yarn left for a second.

Sheep!

All is not as it appears

I do not own a teapot. I borrowed one to block the cozy (i.e., let dry in the desired shape) but it was too large. I wrestled with wet wool but I was not victorious. The cozy is instead drying on some leftover containers, but for photo purposes I faked it!

Roof of the cozy, complete with I-cord handle

I-cord handle edging

The spout and handle openings are cut open, then bound with I-cord (a narrow knit strip). I'm very pleased with how the finishing turned out. Shetland is a nice grabby wool that lets you do seemingly mad things like cutting your knit fabric without everything unraveling.

The only thing left to do is find a friend who'd like a 4 cup teapot cozy.

Happy Solstice

Saturday I went to the Fremont Solstice Parade with a couple friends. It's famous for the pre-parade of naked painted bicyclists. I had never been, which is embarrassing to admit.

Wonder Woman!

There were many rainbows

Last night I headed over to a local beach to enjoy the longest day of the year. I posted an invite in my local Girl Crew group and invited friends. There were 5 of us, and we joined a couple with an impressive fruitwood fire. We had a great time! The rain even waited until we were leaving :)

Last light behind the Olympic mountains

Puget Sound at Solstice sunset

I am Summer's Thyroid

I am Summer's thyroid. Or adrenals. Or something else endocrine. I make Summer uncomfortable when the temperature tops 75F, or during muggy weather at any temp. I am the cause of much sweating, shakiness, sleep disturbance, loss of appetite, and GI unhappiness.

You may think I love my job but you'd be wrong. I am at the whim of Summer's immune system as much as she is, and what a Greek chorus! I did still manage some fun recently: despite classic hyperthyroid symptoms, her thyroid labs came back normal. Oh that was a rewarding day!

Summer is learning to cope with me, which is rich after me coping with her for almost 4 decades. Wicking t-shirts, cooling neck wraps, hand fans and portable spray bottles are just a few things in her Amazon search history. What Summer lacks in heat tolerance she makes up for in google-fu.

So maybe I'm an ass, but I'm hers. Unless I am the problem and she destroys me with radioactive iodine. It's going to take a month to see an endocrinologist, though, so I'll have plenty of fun until then :D

More Doctors!

My immune system is a bored asshole so I get two new specialists--it's going to be a busy month. I'll have to start counting on my toes next! From the top and working down:

Neurology
Dermatology
Ophthalmology
*Gastroenterology
Cardiology
Internal medicine/PCP
Gynecology
Rheumatology
Hematology
*Endocrinology

*indicates new doc

This is in addition to multiple specialists I've seen for the same thing, or docs I'm not current with. Plus all the nursing and assistant staff. There are a lot of people helping to prop up this sick body.

The guy I'd started seeing decided he's "not excited enough about us." Whatever that means. I've decided that caring about people is not a personality fault; dating is just an unnatural situation.

I am Summer's Eyes

I am Summer's eyes and I am high maintenance princesses. I do not tear enough and my Meibomian glands are blocked. In plain terms: I'm dry and I hurt.

I hurt in the morning. I hurt at night, especially if she's worn contacts. After one memorable contact lens-wearing day I was sore to the touch the whole next day.

I hurt when she puts drops in me: rewetting drops, antihistamine drops, steroid drops, special gland clot-busting antibiotic drops (which are goo, not drops). But I also hurt when she doesn't put drops in me. I'm a conundrum mean.

I require daily heat compresses and eyelid massages, which have taken various forms this year.
First were 5 minutes of a heated eye mask, followed by massage to express the blocked glands. That continued for a month: no improvement. Summer lay on her back on the sofa, mask on her eyes, a song approximately 5 minutes long on the stereo, and waited. And adjusted the eye mask for maximum heat coverage. And waited. And readjusted. Song's ending: lift half the mask, massage. Lift the other half, massage. Summer utters a deep fatalistic sigh that this tedious exercise almost certainly won't help. But she still did it all again the next day. And the next...

The second heat-and-massage method: hot spoon on the eyelids, immediately followed by massage. The spoon was heated in water, generally hot tap water topped off with a small amount of boiling water. One eye quadrant was treated at a time. This routine fit nicely between Summer boiling the kettle and waiting for the coffee to brew (Moka pot brews faster when you start with boiling water).

Unfortunately the ophthalmologist hadn't personally tried this stellar¹ concept. One hot utensil is supposed to magically heat the eyelid for 3+ minutes(?). Summer didn't realize the gap between metal-based common sense and the doctor's expectation until the follow up 11 weeks later. Need I say the functional result was nil?

The third suggested method: heat compress, then hot spoon, then massage. Summer's feeling: "I would prefer not to." She has switched to eyelid massages during her shower, which may provide the desired heat and humidity. Or may not. She can't be arsed at this point.

The next day or two will bring the end of the clot-busting eye drops. At which time I'll lose a small piece of my throne. But fear not: the massages and drops and asinine new treatments will continue!

¹sarcasm

Summer's note: I have autoimmune disease (UCTD) and Meibomian Gland Dysfunction, which are almost certainly connected. I do care about my visual health but have very limited spoons, especially for pointless-seeming and difficult self care. The next option seems to be compounded testosterone cream to smear on the eyelid margins. I am clearly the butt of a cruel cosmic joke.

Summer's Sunsets

I have more energy late in the day, so I've been spending pleasant evenings in the park during Seattle's current hot spell--it was 94 on Sunday! Yesterday I managed to climb all 107 steps of the water tower, which has amazing views.

Friday's sunset over the reservoir

Sunday: I love the cloud formations!

Just at sunset, also Sunday

May 17th

Being a Professional Patient

I recently read a Vox article about the free patient labor involved in healthcare. This is why I sometimes call myself a Professional Patient: there is knowledge and skill involved, and a lot of time.  I am my own medical home. My long-term chronically ill friends are almost all intelligent, informed, and excellent advocates for and managers of their care. Why? Because doing anything less leads to a "poor outcome."

Yesterday I spent about 1 1/2 hours thinking, researching, calling and emailing just to begin the process of diagnosing and treating a possible endocrine issue (thanks autoimmunity). I emailed my rheumatologist's nurse outlining my symptoms and asking for an endocrinology referral. Online patient portals make this simple action possible: no more calling, being routed by the switchboard, leaving a message that attempts to be coherent, then waiting a day for a reply. I can also email after hours when my thinking is clearer. I heard back that my PCP needs to generate all referrals, so the nurse forwarded my email to the PCP's office. My PCP is out on Fridays, though, so Monday is the earliest this message will be read.

I took a break. Realizing it will take weeks or months to actually see an endocrinologist, I called to schedule with my PCP. Except she's scheduled out for weeks, too. Oh, but her nurse practitioner had availability on Monday! So I see the nurse practitioner Monday, and perhaps will start the testing process then. In the meantime, I walked to the natural market and bought some thyroid calming herbs--maybe I'll get some symptom relief, and it could even be diagnostic. Tinctures taste disgusting, by the way.

The Vox article didn't mention the amazing work being done by nurses, which is a shame. Doctors are important but it's nurses who actually do the majority of the work. They talk to patients between appointments, get referrals, order labs, and smooth over insurance issues. Good nurses know how hard patients work and do their best to help. Hug the nurses, medical assistants and patients in your life.

Since this topic is kind of a bummer, here's a video of ducklings I saw in the park yesterday :)

Boring Medical Updates and a Depressing Poem

This body, man. At least I still have my sense of humor.

I had a Benlysta infusion yesterday so hopefully that kicks in soon. It started wearing off last week and now I feel awful. I'm waiting on a gastro referral. I saw the ophthalmologist today and have new stuff to try on the Angry Eyes. She wants to throw hormone therapy at them (testosterone eyeballs!) but the FDA hasn't approved it. So it's antibiotics and steroid drops instead.

I'm taking the rest of the week off from my medical stuff. I need a break.


As promised, a poem:

Why do you think I am well?
Because you don't see joint pain sparking and incandescent behind my eyes.
Because I hide the animal, all tooth and claw, fighting in my abdomen.
Because I smile despite the nails in my jaw,
move against the lead in my blood,
speak through sleepless nights and long lonely days.

Illness petrifies my life but
you see familiar silhouettes and are satisfied.

She is well.

How to be a Superhero

Yesterday my hand pain was so high it almost brought me to tears. Despite that, I attended a new knitting group. On the way home I stopped and climbed the Volunteer Park water tower as the sun was setting. It was beautiful!

The sun sets behind the Olympic mountains

Then I got home and did laundry--before Benlysta even one of the day's tasks would have been too much for me.

Today I drove to Olympia to visit a friend whose very ill husband is in the hospital. We were good friends already, but today she said I'm one of her best friends. That is an honor to hear, to be allowed into someone's life and heart like that. Knitting is such a great hobby in these situations: you can just sit and knit and talk. We also checked out a nearby bakery and bought almost one of everything ;)

Chronic illness has taken a lot from me but it's given greater compassion and understanding. I also have days free, when fatigue allows, to spend with friends. These are amazing gifts, however painfully earned. I feel superheroic successfully battling the forces of grief and isolation.

Deflated

Yesterday was a particularly difficult Monday. A guy I'd been seeing, who was enthusiastic just the night before, ended things. And in a confusing way. But since communication issues were the cause I guess I shouldn't feel surprised. Rejection still sucks.

Two friends are going through difficult things, so today and tomorrow I have missions of friendship to carry out. I enjoy being able to help others. It's frustrating, though, to be capable enough that people rarely ask how I'm doing. I'm doing better at reaching out at least.

Physically I'm not doing great: my weight is down 5 lbs in a couple weeks, which I only realized when all my clothes stopped fitting. Nausea and GI pain have made eating particularly difficult, but I'm trying harder. My energy level is still pretty high though :)

Here's a silly photo of my cats to carry you through the week.

This little piggy sees the vet today

Blog Makeover

I updated some of the descriptions and links to better reflect what I'm actually posting. And what my life is about. I initially said that it's long overdue, and it is, but that's not a kind way to talk to myself.

I've started with links to RA blogs, because that's what I found. There aren't very many people with Undifferentiated Connective Tissue Disease (my most recent diagnosis) to begin with, and most of those aren't much up to writing. I know the feeling. And if you google "autoimmune disease blogs" you get freaking Sarah Wilson boasting that quitting sugar cures everything. Thank you The Katering Show for a proper response!

I'm continuing to reach out to fellow autoimmune folks, locally and online. Meet the Arthritis National Research Foundation's latest #CureArthritis team member :) I'm also making new friends and assembling a support system can actually help support me. As well as hammering it into my head that needing support is healthy and normal.

Dumped

I'd been seeing someone since Jan. Things were going well, not fabulously but well. He was sending some mixed signals but stress could've explained that. Until what I thought was our Thursday date night turned out to be me getting dumped.

As far as dumpings go it was ok. There was focus on it not being due to my poor health, his emotional baggage is the issue. Ironically, I'm the healthy one in that respect. But it's been a hard couple weeks. The same night I also heard about a family member's health issue, that's still pending.

I've been thinking a lot lately about my future. It's scary. We're having a beautiful weekend in Seattle and all those thoughts are chasing themselves around my brain. Maybe I can still shower and get out in the sun a little this afternoon. That would be a pleasant distraction.

Summer Does Serotonin Syndrome

Well, mild serotonin toxicity is more accurate, but it lacks alliteration. Regardless of the name, still not fun.

A nice simple diagram

On Thursday I got terrible nausea and thought, "hmm, maybe I'm getting a migraine." So I took Compazine and Imitrex, went to neck PT, felt better and went about my day. That evening at a friend's I started to feel weird: stomach-twitchy-butterflies, fuzzy headed, trouble focusing my eyes, and akathisia. I took some meds, slept soundly, all better. Right? Not right.

So Fri and today I still felt weird. Yesterday I slept, then today I finally figured out what the heck was going on. Good news: this is not a new autoimmune symptom. Bad news: it's going to take a bit to wear off. Because a bunch of my meds act synergistically and make each other more toxic (isn't science fun?). And dumping two serotonin-happy meds into the mix is a Bad Idea.

Now I've crossed another unpleasant experience that off my chronic illness bucket list. So that's something ;)