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.

Caribbean Vacation! and hard news

I just returned from a week-long sailing vacation in the British Virgin Islands with family and friends who are now family. It was beyond expectations and words cannot convey the amazing time we all had. We snorkeled and talked and ate and played with the kids, and I jumped off the flybridge into moonlit water to swim with bioluminescence. Three times.

My energy level was amazing for most of the trip and I was one of the first into the water every chance. We saw so many fish, I practiced snorkel diving, and my body did so well! The tropics are a fabulous place for me to visit, but heat rash let me know that more northern climates are best long-term! The travel days, especially the flights, were exhausting and tremendously painful but I knew that going in.

The trip wasn't all positives, though. Seeing the scale of hurricane damage up close proved the consequences of how greatly humanity is changing the climate. My cousin and her young family were on the trip; her husband was our captain. The last full day we learned that their home in Redding, Ca, was destroyed by the Carr Fire. There were some tears shed and shock all around, but also tremendous gratitude that they didn't live through that nightmare. They're now making big decisions about their future on an increasingly risky planet.

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.

A kinder, gentler October

After a rugged September I'm relieved that October has started off well. I now have home care (cleaning, chore help, etc) covered by my insurance, provided by an awesome lady in my building. She wants to learn to knit so I may make a new friend as well :)

My local best friend is moving into the city--today in fact! We get up to the best shenanigans and I know she'll be much happier not living far away from all the fun things.

I saw my rheumatologist yesterday and she's doubling my immunosuppressant dose. After a month we'll know whether it's helping or not, and if not we'll switch to a new biologic. Heading into Thanksgiving and the winter holidays with a plan that's not "watch and wait for months and months" will help my mood.

I'm still working on recovering from the breakup. My clever plan to find community was abandoned after hitting the wall that is my body's limitations. Once again I was reminded that I'm doing my best. Instead I've been taking long naps and staying engaged with friends online.

Ella helps model my latest knitting project

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. 😁

Let's get probiotic; or I am Summer's microbiome

Last month I took a free uBiome gut microbiome test and learned that I had basically zero probiotic bacteria. So I've started eating yogurt. The new fancy Greek yogurts are quite tasty, not at all like the runny gritty yogurt of my youth. I like to buy unflavored versions and add unsweetened apricot preserves* and granola.

The first crop: Smári, Noosa and Fage

Smari was up first. It had an aggressive yogurty tang and no sweetness at all. It would pair nicely with sweet jam but I added honey. I'll keep this in mind for days when my tongue craves lactic acid.

Second was Noosa. Noosa is tangy and rich but not too sweet, and great for breakfast or lunch. I loved its thick texture and honey sweetness. It has a high fat content which stops it from being my daily choice.

Fage didn't impress me. It was very thick, tangy, and unsweetened, yet lacked the mouth feel of full fat yogurt. It mixed well with apricot and granola but I wouldn't eat it alone. I'll consider trying the 2% fat version, in part because Fage is easy to find.

And last came Ellenos. I was powerless to resist: sweet, creamy, not heavy, and there's a passion fruit flavor. Ellenos is delicious but with no yogurt tang it's like eating dessert. I tried eating it for breakfast and confused my brain and stomach no end. 

Welcome to the Cult of Ellenos

Conclusion: I'll keep looking for a daily yogurt. Now that I know yogurt and I get along I'll try brands available in large tubs. I've learned to keep an eye on the fat and sugar content. And I know the difference in flavor between different yogurt-making traditions.

Ellenos will remain my dessert or afternoon snack yogurt.

* I have a couple jars left from 2012's batch, back in healthier days.

One more thing x 10²³

I saw my PCP yesterday for a physical. She noticed a heart murmur, one that definitely wasn't there during a cardiac workup in 2014. So it's back to radiology for another echocardiogram which at least is a cool and painless test. I'm super glad to be seeing Awesome Rheumy in 9 days (yep, I'm counting) rather than continuing to free fall without a rheumatologist or treatment.

I spent much of the last two days emotionally confused. Heart damage is not good, even a just a little bit. But this feels like a solidly Real Symptom that may help with an SLE diagnosis. And that would lead to greater treatment options, including clinical trials if I run out of new meds to try. Evidence that my borked immune system is winning is still tough to handle. But chronic illness has honed my ability to quickly adapt and accept, and that I have!

Sunday was a gorgeous hot day, the kind we rarely get and even more rarely can truly enjoy. My mom and I went to Mt Rainier and gawked at the views. I totally crashed on the way back and slept in the back seat. But seizing the day was worth it!

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"

Grief, Acceptance, and Deja Vu

I haven't written in a while. Expressing coherent thoughts has been very difficult the last three months. And I've been going through the same freaking grief cycle yet again. I get sicker, I lose parts of my life, I can't accept it but have to live with it. Rinse and repeat.

Making gains means any subsequent loss has already been processed, right? Hahaha, no. It's more grief, this time with the fun twist of knowing what the future holds.

I'm getting too dizzy to continue so I'll sign off. Life feels exhausting right now. Maybe by morning I'll forget how far removed this is from the norm. Denial is a big coping skill.

Refractory disease

I'm all but diagnosed with treatment-resistant CNS lupus. Next week we will mine my brain to determine how great the impact is, then begin an immunosuppressant medication. The super targeted approach has failed and it's time for bigger guns.

I'm so used to accepting my reality as normal that I forget how abnormal this all is. I've become isolated by higher fatigue and the frequent inability to drive. But I don't know how to talk about the fact that this disease is winning, especially as I work so hard to hold things together. I don't want to live the rest of my life jumping from medication to medication as they all fail in turn. Yet I don't see another option.

In the meantime, I'll keep knitting. I cast on Morvarch Jan 1st and have been diligently knitting since then. The interesting bits are mostly done, now it's a long stockinette march to the end.

The yarn is "Emerald City" by Hazel Knits, it looks like evergreen trees :)

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 :)

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!

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.

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

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.