42 and 25

October is a strange month in my life. Last week I turned 42 years old and the week before that marked 25 years since my constant headache started and I became chronically ill. I remember brief clips from that time: crying in pain while waiting for my mom to get home from work; listening to my mom unenrolling me from my community college class with tangled feelings of relief and failure; a kind nurse holding my sweaty hand while the doctor performed a lumbar puncture; thinking that surely I'd be better by Thanksgiving, by New Year's, by Senior year. I turned to hand work and old movies, which is when I started quilting and taught myself to knit. An inpatient headache clinic decreased and stabilized the pain enough that I could attend college part time with my friends.

I've been trying to write a second paragraph for days but can't find the right thing to say. As the autoimmune cognitive disfunction worsens it gets harder and harder for me to put thoughts into words. I've made the best life I can given the constraints and difficulties. Pain and illness have changed me in fundamental ways and have pushed me outside the mainstream. I don't have the career or romantic partnership that I assumed I would, nor do I have relatable experiences or anything resembling a normal life. But I'm usually happy and probably enjoy life more than the average person. Above all I try to love others and be kind.

Right now I'm going to be kind to myself and take a nap.

 I climbed a view tower yesterday in memory of an arthritis friend who passed away recently.

Here's to not failing!

I've been feeling better--spontaneous partial remission if you're fancy--and have been taking full advantage of that. I started a tenants union in my building, which has been scary and daunting and lots of work. But also very rewarding. I realized tonight that I had a realistic expectation of failure. But instead of petering out due to my poor health and neighbors' lack of interest, it's actually happening!

A local news article about the Seattle Housing Authority's shady evictions has brought some positive attention. There's a huge conversation about housing in Seattle right now. I think we may be able to create meaningful change, including among the poorest and most vulnerable tenants. It feels really good to have a job again.

Never a dull moment; or I am Summer's flooded apartment

Life continues to be interesting, with my apartment flooding yesterday and more water issues today. Plus some Ella news. With a health update at the end.

Yesterday morning: minor flooding in my bathroom, kitchen, bedroom closet. No leak found, water vacuumed.

Yesterday afternoon: more flooding in bathroom, living room, bedroom, kitchen. Mass furniture migration. Kitchen wall opened, leak found, leak patched overnight. More water vacuumed.

Lake Living Room

This morning: ceiling rain in the shower, drain pipe repair, snow, hysterical laughter.

This didn't inspire confidence

The shower's drop ceiling was leaky last night and the sheetrock had some give. This morning it was positively squishy. I poked holes and voila streams of water.

Ella didn't approve 

By noon today: the drain pipe, perforated by aggressive snaking Thurs morning, was repaired. Temporary plastic was applied.

New shower ceiling

One of a kind kitchen

The point when I broke:

11:09 am

There's water damage to more walls in the bathroom, which maintenance will fix next week. I don't know how extensive the repairs will be. I am not confident that one day will be enough.

The good news: the floors are fine, just dirty. No furniture was damaged. The apartment is livable. The sun came out in the afternoon. And I have the weekend to rest.


Ella: Ella saw the vet Tuesday for an exam. She's almost 13yo so they ran blood work and the vet called Wednesday with the news that she has chronic kidney disease. Monday I take her back to check blood pressure and talk dietary management options. They were quite charmed by Ella, and shocked that she'd been a feral kitten, so that at least made me feel good.


Health update: insurance approved Enbrel in late Jan, I took three doses in Feb, but had such a bad reaction to it that I had to quit. It increased fatigue, cognitive issues, and joint pain, caused dizziness, hot and cold flashes, and overall made me feel awful.

I saw my rheumatologist two weeks ago. I'm to recover from Enbrel and start triple drug therapy (Plaquenil, methotrexate, and sulfasalazine). We'll talk next steps in two months.

I started weekly acupuncture in January, and that helped with temperature issues in spite of Enbrel. The goal is to help balance my body systems, and now that I'm recovering from Enbrel I am optimistic that acupuncture's benefits will be more noticeable. It makes for a busier week, though.

Denied

Already it's been an interesting year. On Jan 2nd I got an eviction threat from the building manager based on--I kid you not--removing an outdated piece of paper from the lobby. That started a quest to bring attention to the manager's pattern of bullying and threatening tenants. I'm working with a tenants' rights organization on that. I don't always want to be the squeaky wheel but I am good at it.

Then came last week. Tuesday I was so tired I stayed in bed most of the day, including when my Home Care person came to clean. (Yay, the state is paying someone to help me now!) In Wednesday's mail I was denied SSDI (insufficient evidence) and Enbrel (ditto). SSDI is better disability than I currently have, but to qualify I have to prove I was unable to work before age 22. Evidence from 19+ years ago is not easy to find. Enbrel is the new autoimmune med Rheumy wants me to try. Except it's for RA and I don't have RA. Rheumy and Nurse are appealing, which is quite a job. I love them.

Also Wed I discovered that someone had stolen my new wicking boxers from the mailroom. The night sweats are back and worse so I've been assembling tactical pajamas. I put up signs. The signs made me feel better.

I'm too tired to feel shame
Caption: I want my underpants back. Tuesday Amazon delivery. Blue boxers.
Won't fit you; I'm tiny. No questions asked.

Thursday my massage therapist was out sick, so I had a day to go splat and see a friend. Friday Nurse called about the Enbrel denial and I took a last minute trip into the office for a TB test. It's required before Enbrel can be approved and this way we're on top of it. I stopped into the records dept and signed a waiver to get copies of whatever SSDI-relevant stuff is in my chart from 1996-98. Fingers crossed there's anything at all. After all that I crashed.

Things are looking up because on Friday I'm heading to Hawaii for a week 😁 Warm and sunny sound perfect right now. There the air kissing your cheek smells like flowers.

PS: Amazon refunded my purchase and replacement boxers arrived today.

2017 Turdnado

Hello from this last day of 2017. My brain is doing the fun thing of reflecting on all the disappointments of the past year. There were some positive moments, for sure, but generally it was a downhill slog. The thing I feared happened: most of the gains I'd worked for evaporated as my health deteriorated. Plus our collective psyche has been damaged by the toxic political climate, hitting all of us in very personal ways.

I try not to focus on the strength that allowed me to persevere. It's a mixed blessing, and one that makes me appear more independent and less alone than I am. The losses of this year hit me hard--lost health, lost friendships, lost long-term relationship--and adding them to my life-long grief list doesn't feel good at all. I'm not sorry to be alive and sane, don't get me wrong, but life is still tremendously difficult.

Practicing good self care helped, though. I finished and wore the Water breakup shawl last week: it's very soft and cozy. I'm unabashedly my own weird self. And friends online and in person are the joy in my life.

Water posed on my Christmas tree

Top left: April's Peepicide; Top right: brownies for Sweetie

Bottom left: Xmas tree; Bottom right: my new hat!

Instead of looking back I'm focusing on Jan 5th's Awesome Rheumy appt. The thought of her examining my hands makes me want to cry, but at least my symptoms are visible? I have no idea what the next step will be. Brain in a jar is sounding pretty good right now but she probably has a couple ideas before we take that step ;) Being able to walk, think, sleep soundly, and socialize are my giant unspoken goals.

If this post sounds conflicted...well that's because I am! Teetering between optimism and realism, trying to hope for the best while bracing for the worst, living in the moment unless that moment is miserable in which case distract-distract-distract, and questioning the meaning of it all: that's me summed up in one terrible run-on sentence.

May we all have a better 2018. May love win.

December catch-up

Ok. It's been a busy couple months for all my usual reasons. In November I caught a nasty cold. After two weeks that morphed into a persistent cough and a sinus infection lasting another week plus. But I'm recovered! finally Now it's just my own immune system kicking my butt, which I'm actively not thinking about until Jan.

I returned to the pain clinic in Nov as well, the one that cold turkeyed me off morphine in 2013 thus trashing my hypothalamic-pituitary-adrenal axis. This time I got two new meds that didn't help and made me miserable. I won't be going back there! Hopefully the resulting night sweats decrease enough that I can stop changing pjs nightly and leave the towel in the bathroom.

In early December I visited a friend in Centralia for a long weekend. We had a lot of fun and it was a perfect break :) I was able to drive down, too, which was fantastic!

This year I put up my first-ever Christmas tree and it's very cheery. We all need a sign of hope this year so I knit a pussyhat for top. And since I'm an internet dork, a glittery teal dear decorates the base. Ella, remarkably, has shown zero interest in all of this.

In knitting news, I knit this winter's #resist hat. It worked up fast in worsted wt yarn.

Knit hat with "feminist killjoy" in rainbow letters.

And more ornaments, taking advantage of the 8 days each year that I'm motivated to knit such things ;)

It's been a hard year but it was filled with love. May you all feel cherished this winter.

Rheumatology update

Awesome Rheumy is back and I had an extremely positive appointment with her in July! She had some questions for my hematologist before prescribing new meds. So I waited, and waited, and got tired of waiting and ran around kicking butts into gear, then waited more. Did you know it's almost impossible for two specialists to actually talk to each other?

In late July I was once again hit with the dizzy stick plus some other neuro symptoms. Poor memory is among them so I don't have a symptom list. AR was told and squeezed me in for a visit two days later. At that appt she prescribed Imuran/azathioprine, an immunosuppressant also used after kidney transplants to prevent rejection. Hallelujah!

I officially have systemic lupus now, which should ease treatment hurdles in future. SLE carries much more weight than Undifferentiated Connective Tissue Disease. The azathioprine is treating me very well so far, no increase in nausea, and I've titrated up to the full dose.

My emotions have been all over the place since June but finally seem to have leveled off. It feels great to have a doc who has the ability and desire to diagnose and treat me. She believes we can achieve remission, that it's a matter of time and finding the right meds. And my neurological issues will resolve as the level of inflammation in my body is reduced. 😁

The high price of subsidized housing

I started writing this post in Oct 2015 but left it unfinished because this topic makes me angry and depressed. But in the last month Screamypants (my next door neighbor) feloniously assaulted her own guest, my moth war proved to be hopeless, and someone took a heroin withdrawal shit in the elevator.

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You cannot understand the transaction until you've lived it but let me try to explain: subsidized housing is easy on the checkbook but takes a big bite out of your pride. I am willing to give up dignity for happiness, ready to sacrifice my ego to create a partnership of love and caring. But I resent paying what can feel like a piece of my soul to rent a crummy apartment that was designed, built and maintained on the cheap by people who largely don't care.

Subsidized housing is the Hav a Heart trap for humans. First you hand over bank statements, have your income checked by IRS, bring your Social Security card and photo ID, and spend an hour signing a tall stack of forms that equate to "don't eat lead paint" and "don't set the building on fire." You think you're getting everything you need: a sturdy box, food, your own space. Later you realize it's a metal cage and the out-of-date tuna doesn't smell quite right. But by that time you're stuck living what can be a nightmare in theoretically normal housing.

From the outside my life probably seems fine. The victim blaming voice in my head even suggests that it's partly my fault for making this look too easy. My options are slim, being unable to work and living on $735/mo disability. Without my disability I could work, without my disability I could drive, without my disability I wouldn't need quick access to Seattle's medical centers. But with my disability I am poor and practically invisible.

I feel affinity for this quote about raccoons. "Their willingness to persist on our leftovers while living in marginal habitats makes them very common."

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Fun fact: while I've been writing this two Very Loud Women have been hollering at a third woman in the parking lot outside, at 1:30am. Third woman took a building resident's parking spot. The building resident parked their van behind her. And the two others are trying to Very Loudly direct her out of the spot. Third woman is a poor driver and terrible at geometry, however, so this has carried on for at least 15min and she's no closer to being free. I wish I had a hose to turn on them.

Rollercoaster March, or I am Summer's Continuing Search for Diagnosis and Treatment

In early March I had cognitive testing. The results came back and even my "performances with incontinence remain within normal limits." I used to be extraordinary*, now I'm mostly above average and sane and coping with executive function difficulties. That's my takeaway anyway.

In early April I saw my current rheumatologist (nicknamed Baby Rheumy, she's only been practicing since Sept). She can't diagnose or treat me based on my test results so I'm up shit creek without a paddle. I've exhausted the seronegative rheumatology options my insurance covers, which doesn't make me feel as special as you may think.

This week I saw my PCP to say "please help." This wasn't the first time we'd had that conversation. Turns out Awesome Rheumy (my former rheum) is back in the office very part time after an extended health-related absence. So we messaged her to say how much I'd like to see her again. "Help me Awesome Rheumy, you're my only hope" is how I'd have put it; PCP was more eloquent and less desperate. AR is the doc who gave weight to my symptoms, connected the dots, gave me diagnosis, and started helpful treatment.

And now I wait. Awesome Rheumy's nurse will call to schedule an appt...at some point. I hope. We had a great working relationship and I have no other options, plus she enjoyed the puzzle that is me. I'd cross my fingers if not for the cat snuggling on my arms.

*"An estimated high average to superior level of premorbid functioning"

Cleaning while chronically ill

Something you don't think about when entering the Kingdom of the Sick is cleanliness. You don't ponder how to scrub the toilet or vacuum under the couch until your body always wants to sleep and your hands are glowing with pain. You don't mind the dust until you are powerless to remove it.

Usually people enter my home and say "it looks clean" or some variation thereon. Which is true but can imply judgement: why are you asking for help when your home is cleaner than mine? They don't see the dust that accumulates under and behind everything. They can't understand my panic at clothing moths entering from other apartments and trying to nest in my woolens. Or that cat vomit is dried to the floor under my bed because I can't reach it.

I like my apartment. It's well located, my unit is bright and spacious, I can afford the rent. But the building is dirty. The ventilation system has likely never been cleaned so dust and grit are blown everywhere. Neighbors have pests which infiltrate my home. The shower caulking mildewed and maintenance's solution was to apply clear caulk over that. Dirt has accumulated in every crack. And I'm powerless to change this.

I struggle to accept this reality but I cannot consistently do so. I've had help cleaning but it's impossible to ask someone to clean what they can't see. And I'm the only one who takes a more than cursory glance at my home. I will never solve the clothing moth problem while I live in this building. For someone whose medium is wool that is a painful fact.

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 :)

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?

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.

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