August 30, 2016

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!

August 26, 2016

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?

August 24, 2016

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.

August 23, 2016

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.

August 19, 2016

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

August 17, 2016

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.

August 8, 2016

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!

August 5, 2016

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.

August 3, 2016

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 :)
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