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 :)

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!

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.

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!

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

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.

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.

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.

Benlysta Update

An update on my Benlysta journey, largely because I'm not seeing blog posts about side effects more recent than 2012. People are still taking this med so I will share my experiences so far.

After 3 infusions in 4 weeks my benefits are:

• Reduced fatigue(!!!!!!!)
• Reduced tissue inflammation
• Reduced skin irritation (eyes too--contacts every day!)
• Reduced joint pain

Side effects:

• Insomnia*
• GI upset (worse after infusion)
• Nausea
• Dizziness
• Feeling wobbly or shaky (not new but worse)
• Headache
• Increased urination
• Restless leg
• Fever (mild, only after the first infusion)
• Ear pain
• Craving for carbs
• Olfactory hallucinations

Some of these side effects, like restless leg and headache, only appear in the evening. I have no idea, circadian rhythms and antibodies I guess? I don't have a PhD thus haven't tried to research it.

Caveat: The improvements after the first 2 infusions wore off before the third infusion. So I'm back to sausage toes and cranky eyes. But I have faith that the improvements will last longer as I stay on the med. I really hope they do, because infusion #4 isn't for a month.

*Insomnia thankfully has eased. I'm still taking 25mg Trazodone to stay asleep all night but my ability to fall asleep is back to normal. This was the side effect that could have driven me to stop Benlysta so I am very very very glad.

Hawaii Vacation Part 2 (of 2)

I am back home from Hawaii, where I had a fabulous time!

Kona sunset watching/beach knitting

The Benlysta seems to be working, I had an energy bump that lasted until the second-to-last day! Realistically I should call it a period of diminished fatigue, but energy bump sounds better. Also my skin was less irritable and overall I was less swollen :) Ankles-not-cankles, woo!

But back to Hawaii:

Gecko on my balcony!

Warm and breezy

INSIDE the Kona airport

I would enjoy flying more if all airports were like Kona's.

Coffee plantation

Kona Brewing Co's Big Wave Ale with pizza

I tried several varieties of Kona Brewing Co's beers. My favorite? Da Grind Buzz Stout, which they don't appear to bottle. Black Sand Porter was also quite tasty.
I saw people drinking Bud Light--really? REALLY??? Let me buy you a Longboard.

The sunsets were amazing

Sunsets were beautiful, also a time when I could hang around outside without sunscreen ;) It did confuse me to have the sun setting at 6pm--the warm weather tricked my brain into thinking it was summer, when it stays light here until after 9pm.

All About Benlysta

Yesterday I had my second Benlysta infusion. It went very well: I wore a tiara, a warm handknit sweater, and brought a warm blanket (cold room + cold IV = double cold Summer).

A very nice person in my local Buy Nothing group gave me this beautiful tiara

The infusion process:

IV is started (easy peasy when you have an excellent infusion nurse)
Benadryl is run (caused phlebitis last time so it was diluted before being run w/ saline)
IV machine beeps a few times, for various reasons.
Benadryl makes me dopey so I insert headphones, wrap up in blanket, and relax
Benlysta is started--the main event!!!
Benlysta takes an hour so I fiddle with my iPad, listen to music, and chat with the nurse
Few more interspersed machine beeps

Then it's done: IV is removed, arm is wrapped, and I go home

This week was extra special because the wrap matched my sweater :)

So far my side effects are:
Post-infusion fatigue, though it hasn't kicked in this time (Yay!)
Insomnia. I doze in bed for hours but can't fall asleep before almost crack-of-dawn-o'clock
Headache
Nausea and loss of appetite

I'm hoping these fade as my body adjusts to the new med. Especially the insomnia.

Christmas Miracle

I've mentioned that I have a friend staying with me over the holidays. Unfortunately, this friend got a cold starting the second day. Very sad :( But even worse is that I'd just started a new biologic, which greatly increases risk of infection, and I already get sick at the drop of a hat.

But...I didn't catch the cold! It's amazing!!! I wasn't sick for Christmas, I'm not sick for New Year's Eve, I'm not sick and thus have to skip the second Benlysta infusion. None of it. Now that is an excellent way to start 2016!