Permanent Deferral

This week I learned that I can no longer donate blood.

I have B Negative blood. It’s reasonably rare in the general population: rare enough that in the past when I’ve mentioned I faint when giving blood, it’s been considered not a problem for me to donate. 

Someone donated B Negative blood and because of that, my Gran lived for me to know her. For the longest time, I was the only one who could donate for other people to pay back that gift of life that someone else gave to us. Gran was diabetic. Aunt Net had Hepatitis. Mom’s veins were too small to hit reliably. 

You can drive a cardiac needle into my veins. They’re that big. So what if I always fainted? I was giving someone else their grandmother or their child. I can’t do that anymore and it’s a bigger blow than I expected it to be. I hadn’t realized how much of my identity I had wrapped into that act relatively simple act.

They were willing to put up with me fainting if I was willing to donate. Stage three chronic kidney disease, on the other hand, is a permanent deferral. Put simply: I need my blood too much to give it to other people. Blood flow influences kidney function and I have to protect my kidneys.

In theory, if I get better someday, I can donate again. Chronic Kidney Disease does not get better. 

You maintain where you’re at or it progresses. That is how CKD works. CKD is the other health problem that has been in the background, the one that I haven’t wanted to mention. The one that I’ve been fighting without really telling everyone about it. It’s the one that I don’t want to be real, but it’s all too real.

Many people maintain for decades without progressing. My doctor says I shouldn’t obsess or worry about it. I just need to be proactive in protecting my kidneys.

Proactive. That’s a polite way of saying “obsessive,” because this situation cannot be allowed to progress. Progressing means medication and dialysis and a sitting on waiting list for a transplant. That’s not even an option. It can’t be allowed to happen. That means everything is now about my kidneys. 

I can’t take ibuprofen anymore. It’s hard on the kidneys. Naproxen helps when I have a migraine. It’s hard on the kidneys, so it’s limited to migraine use only. My liver function is great, so I may have up to 500 mgs of acetaminophen to treat normal pain, like a normal headache. Anything beyond that needs a call to my doctor to get approval to use it because it might be hard on the kidneys and I no longer have kidney function to spare.

Currently, every four months I get to have my Glomerular filtration rate (GFR) done to make sure my kidneys are still maintaining their current level of functioning. My next test is in April. If I hold steady for long enough, I may be able to go down to testing twice a year.

I have to start trying to get the flu shot every year and treat my reaction to the flu shot. I  cannot afford to get sick. My kidneys have to be protected. I cannot allow this condition to progress.

And now I can’t donate blood. I can’t be the person who gives other people their loved ones. I’m too sick for that now. Unless someone comes up with a regenerative therapy for renal damage, I always will be too sick to donate blood. I have to figure out how to live with that.

The birthday dinner

I am writing this while sitting up and waiting for my mild tummy ache to subside enough to go to sleep. Gluttony being what it is, I should feel shame, I think. 

I don’t. Just mild regret for overfilling my poor belly with garlic fries and and tasty Stroganoff I didn’t have to make myself.
Today was my friend’s birthday, the one who makes me write this blog. We went out to dinner with his girlfriend, my roommate and best friend. We ate too much.

Not intentionally, mind you. It’s just that I didn’t manage to get lunch today and we went to the Pig and Porter here in town. I can’t resist their garlic french fries. We ate three bowls of them. On a normal day, we might have ordered a fourth appetizer to split and called it good, but it was his birthday and the food hadn’t quite hit my brain, so we ordered dinner, too. 

I mean, it was his birthday. It would have been bad form not to celebrate a little, right? We laughed, and talked, and ate ourselves silly. All in all, I rate it a glorious birthday evening.

I wish I had the tapeworm my friend apparently has. He’s got a natural runner’s build, tall and lean, and by all appearances he can still eat anything without actually gaining weight despite being well into middle age. He ate his own meal of bangers and mash (it looked delish!) and half of my roommate’s burger on top of it (also quite tasty-looking) with great gastronomical gusto. 

He, too, spent the evening with mild regret for the amount he ate.

Only the roommate escaped mostly unstuffed. She stopped eating at half her tasty looking burger. I’d take her restraint to go with that imaginary tapeworm (or vastly improved metabolism.)

My meal came with a petite bite of chocolate pie with orange wedges and salted caramel whipped cream. It amounted to three perfect bites, exactly the right end to the meal. It was satisfyingly sweet, but not cloying, and just enough to satiate the desire for something sweet without overpowering the whole meal.

It probably had a billion calories. It was completely worth it.

If I had it to do over again, I would only change one thing: I would eat fewer garlic fries. They were tasty but eating fewer fries would have made the whole meal better. I would still eat the garlic fries, though.

They were amazing.

The moments before bedtime

The moments before bedtime are my favorite moments of the day. The roommate and I sit together in our pajamas like teenagers at a slumber party and talk about whatever strikes us about the day before I wander off to my bedroom and put myself to bed. Sometimes we talk about nothing at all and just sit together and read. It is companionable and sisterly.

It is the best part of the day.

Tonight we talked about the Iowa Games. The indoor paddling event is this weekend and the roommate and her boyfriend are planning to particpate. I’m going to watch. I’m not sure what Indoor Paddling actually entails, but I’ll find out on Saturday.

I do know it involves smaller kayaks, like play boats, in an indoor pool. Beyond that, you’ve got me what they’ll be doing. My experience with kayaks is pretty much flat water only. Maybe a few accidental type 1 rapids, but nothing intentionally white water.

Okay, that’s not precisely true. We took a white water trip up on the Menominee and I screwed up my knee so badly on day one that I didn’t feel comfortable trying to do the second day’s white water rafting trip. Day one was fun, even if I did map most of the rocks in the Pishtago with my bottom for a good portion of the day (prior to slipping and twisting my knee exiting the inflatable “Fun-yak.”

Ultimately, I’ll probably end up trying white water, thought I can’t imagine I’d want to do anything even close to a category 5 rapids. I mean, the videos of people doing it look like they’re having an amazing time. They also look like they’re just a little hopped up on adrenaline in a way that I’m not sure is healthy for anyone, let alone me.

Still, until I really try it for myself, who knows? Maybe I’ve got some kind of inner maniac that’s just waiting to be unleashed on the water.

Or not.

It’s a dog’s life

Sophie-dog leads a hard life.

Whenever my roommate leaves the house, Sophie-dog, Labradoodle-in-residence, flops over as shown in the photo above and acts as if all will to live has left her body. The roommate is Sophie-dog’s favorite human in the house. Without the roommate, there’s just no reason to exist, apparently.

Oh, eventually Sophie-dog will become desperate enough to seek out my company for cuddles, pets, and scratches. Not for a long time, though. First, there are several hours of “I’m wasting away. I’m dying by inches without my human. There’s no point to any of this anymore. This breathing I’m doing? It’s just for show. There’s no purpose to any signs of life in this fuzzy body.”

Finally, after she’s bored both herself and me to tears, Sophie-dog will haul herself to her feet with great effort and trudge over to my chair (or the couch, depending on where I’m sitting.) She’ll push her muzzle under my hand and then drop her chin into my lap.

“Pet me now. It’s been days since I had any sign of affection. Days.”

“I recall petting you just this morning, Sophie-dog. During breakfast. You remember breakfast, right?” I tell her, scratching behind her floppy ears. Sophie-dogs like being scratched behind their ears.

“Days. There’s no love for Labradoodles in this house. None, I tell you.”

“None,” I confirm, petting the top of her head. She could really use a trim. I can barely see her eyes under her shaggy eyebrows.

At this point, Sophie-dog flops down at my feet. “I’ll just keep your feet warm until the entropy of the universe takes its inevitable course. It shouldn’t be long now.”

“You’re probably right, Sophie-dog.”

 

 

Hanten Mantra

an older progress picture of my Hanten by Cheryl Oberle.

One of the hardest parts knitting for me is sustaining interest in projects. As a product knitter, I want the result of my knitting. Unless the knitting itself is engaging, I have difficulty maintaining my focus and dedication on the work until the end.

I want this sweater.

I know my Hanten will be a favorite once I finish it. I can already tell that I will reach for it again and again because I like its organic nature. I like its imperfections, and it’s simple shape.

I want this sweater.

It’s the right color. It fits my aesthetic. It fits my style, Classics with a Twist. In this case, two twists: It’s kimono – traditional Japanse clothing vs. a straight up western piece -, and it’s knit, which is not usual for this kind of piece at all. (I’m not sure that it’s actually a hanten in the strictest sense of the word, but it was inspired by the shape of the hanten, and that’s the name of the pattern, so that’s what I’m calling it.)

I want this sweater.

I just need to finish knitting this sweater, and that’s what’s proving problematic. My subversive instinct isn’t working in my favor for self-motivation. I need to kick it in on myself. I’m bucking “The Man” by finishing this sweater. Big Fashion doesn’t want me to succeed. They want me to give them money for a sweater that’s their vision, not mine. This is my sweater, my vision.

I want this sweater.

I just really kind of want it to knit itself and be magically finished already. Oh, for a pair of self-knitting needles, like Mrs. Weasley had in the Harry Potter books and movies! Now that would be an excellent gift.

The Mouse In the Cupboard

Sometimes I wonder what the mouse in the cupboard, the silent observers in all our lives, must be thinking. I spend a pretty high portion of my life trying to keep everything together and running, trying to be high functioning and independent despite the number of factors that seem to be conspiring to take that independence from me.

In April I see a pulmonologist for my asthma. I’ve never had to see a specialist for it before, but I’ve never really had a winter as hard on my lungs as this winter has been before, either. Since Symbicort rather quickly proved it wasn’t helpful to me, I don’t know that I have much in the way of choice in the matter. A more expert opinion might give me more options. (I do so like the breathing, after all.)

My primary care physician is trying to convince me that I might want to see a rheumatologist for the fibromyalgia, too. I’m not sure I’m ready to admit defeat on that front. Defeat and specialist means potentially beginning another round of using myself as a test subject and potentially having another round of awful side effects and the less than stellar mood that goes with that. 

I’d rather get my lungs back under me so I can exercise more. I’ve always had better luck on that front than with throwing meds at whatever was acting up.
Yes, I’m still a little cranky about both the Symbicort (side effect: instant asthma attack – just add trying to take Symbicort) and the Tamiflu (side effect – all the stomach problems and a side of dizzy to remind me that I’ve been taking not being dizzy for granted lately.) What the actual hell, Big Pharma? Do none of you bastards in the finance end of things saying “Push the anti-viral. We’re stuck with it.” ever have side effects?

And then there’s the thing that lurks in the background. The thing we’re watching and that scares me the most. The thing that I don’t say on this blog – that I don’t tell most people. 

When I go for my follow-up with my primary care physician (also in April) we’ll check on that, too. She says not to worry. She says to follow my diet and be judicious and that I can hold the line where things stand. Things don’t have to progress.

Does the mouse in the cupboard see it all? Does he see the face I want him to see? The mostly happy, confident woman who is grateful for all the loving people and good things in her life. 

Or does he see how afraid I am underneath it all that I’m not going to be able to hold this all together? That I fear the day is coming when there won’t be enough red lipstick and carefully curated clothing to hide behind. The dam will burst and everyone will see the truth: none of this is easy. I may not be missing a limb, but I’m not an able person. I’m chronically ill with multiple coexisting conditions and I’m having more days where that’s showing. 

I’ve been very lucky to be as able as I have been my adult life and I’m scared as hell that I’m losing my hold on that. I’m afraid of what will happen if that happens. How will I support myself? How do I keep from becoming a burden to society? Will I be able to maintain my level of maintenance medical care?
Should I just stop trying to act like everything’s normal and fine for the benefit of the mouse in the cupboard? Days are good and days are challenging. They’re going to be that way whether I pretend I’m fine or not. Maybe gracefully dropping the act would give me more energy to focus on the things that matter most: Friends. Family. Being a benefit in the world.

Pretty much everything but that mouse in the cupboard, who likely has their own business to mind anyway.

Influenza A

has hit our house. My flu started Saturday morning, complete with body aches, headache, fever, and full mucus offloading. I got the test on Monday and the test results on Tuesday with a prescription for Tamiflu.

Tamiflu is not something I’ll be taking for the flu again. I didn’t have any nausea, stomach pain, vomiting, diarrhea, or dizziness before taking my first (and last ever) dose with dinner on Tuesday night. Nausea and stomach pain started within ten minutes of taking my dose. $90 for feeling like I have norovirus on top of the flu, and a chance of making my illness last a few hours less (if I’d managed to get the prescription on Saturday?)

Thank you, but no. Whoever invented this might be helping some people, but earns two kicks in the shins from me if I ever meet them. By the end of the night, I was sitting up waiting for the last wave of diarrhea to pass so I could drink some warm tea to soothe my stomach and try to sleep.

Poor sleep meant today I got to have my headache back all day long.

The roommate began showing signs of the flu same Sunday night. She did not go for a prescription of Tamiflu. She seems to be doing about the same as I am with it, only without a trip down Side Effects Lane for good measure.

If someone could send a the Plaguelands equivalent of an old priest and a young priest with a full set of quarantine gear and some Lysol, I think we’d be much obliged.

What I learned this week: 2017 02 11 Edition

  1. My blog site colors are currently the same as my wardrobe colors. (Specifically, Navy, Plum, and White.) This was not intentional. I just really like those colors.
  2. I’m so used to feeling terrible (Thanks, fibromyalgia, a cold that was taking forever to go away, and an asthma flare up) that it took me actually running a fever, having a constant headache and a sore throat to realize I now have the flu. Grr.
  3. Sometimes the only answer for things is to just go to bed.
  4. My people really love me. Thank you to both of you for taking such good care of me.

Headless

One way to refer to a computer without a monitor is “headless.”

I mention this specifically because at The Day Job I’ve been asked to house a headless computer which we use for automated metrics runs under my desk since I’ve got “plenty of room” at my desk. The person who currently houses the Metrics Computer is moving to a new area, so the metrics computer needs to be moved to a new home.  

Apparently word of my frequent refusal to allow my desk to be used as a storage area has gotten out. It’s the reason I have plenty of room at my desk: I don’t allow people to use my tiny cubical as a storage area for miscellaneous items and I keep my desk tidy.

The fact that the computer is headless was promoted as a bonus to me because it wouldn’t suck up as much room. That wouldn’t have mattered. If it didn’t fall under my rule, I would have protested it being stored at my desk. My rule is only “reasonable” items may be stored at my desk. 

I classify the metrics computer as reasonable because I use the metrics the computer generates for my weekly metrics publishing tasks, so I surprised the co-worker who was trying to convince me to take ownership of the headless computer by saying, “Bring it here. I use it’s metrics. I should have it,” before he finished his well thought out arguement to convince me that it wouldn’t be any bother.

“Just one condition. It may live under my desk so long as we call it Marie Antoinette.”

“Marie Antoinette?”

“Because it’s headless. Like Wednesday Addams doll and the historic French Monarch.”

“Oh. Okay. Whatever you like. But why not Icabod?”

I shrugged. “Icabod Crane wasn’t headless. He was chased by the Headless Horseman, who didn’t have a name in the story.”

My coworker looked amused. “Then it’s settled.”
“Yes. Marie Antoinette shall live under my desk starting as soon as it’s convenient for you to move her here.”

The new person popped her head around the corner. Apparently she only heard the last of the story. “That’s a really odd thing to hear over the pod wall.”

I know. Dear coworker. I know. And that is why I gave a name to Headless.

Five Questions | Skincare/Makeup edition

I saw this over at Gretchen’s Closet and desperately needed a writing prompt for today, so here it goes.

  1. Why do you (or don’t you) wear makeup?

    I’m okay the way I look without makeup, but makeup makes me feel more like myself, and makeup can be fun. I can experiment with different looks without the permanency of new hair color, for example. My current red hair is going to be something of a pain to get back to my natural blondish shade, and I’m going to start that process on my next trip to the hair stylist.

  2. When do you wear makeup? Do you put it on every day, no matter if you’re just going to be at home or going to the grocery store, just for yourself? Or do you save it for special occasions?

    I should wear it every day and not save it for special occasions. I like wearing it. I just tend not to most days, probably due to the perception of fuss that I sometimes associate with it.

  3. What are your 2-3 can’t-do-without skincare/makeup items?

    Lipstick and a moisturizing foundation. That’s it. Eyeliner, if you push me. I’d say Mascara, but finding the right mascara that stays put and doesn’t make my eyes tear up is always a challenge, so I go with eyeliner instead and often skip the mascara.

  4. How have you changed your routine over the years? Or haven’t you?

    Mostly I’ve been bolder with lipstick colors. When I first started wearing makeup in my teens, my mother was adamant that all I could wear was pale pink or nude shades. Since Mama was providing the makeup, I wore what I had.

    As I’ve gotten older, I’ve branched out and tried more colors. Coral, plum, rose, and red, even black back in the day, though that didn’t work for me.
    I’m an unabashed fan of red lipstick. It has a punch that can bring you up when the world is trying to bring you down. Nothing says confidence quite like a bold red lip. There’s a red lip for every occasion, even work. You just need to experiment with color a bit to find the right shades for you.

  5. Do you do your own nails? Or have manicures? What products do you use if you do them at home?

    I do my own nails. I’ve always been very utilitarian about what I need to do with my hands, and the fact of the matter is that I admire glorious long nails, but they’re just not practical or practicable for my life. I am for neat, nicely kept nails for every day, and paint my nails or use Jamberry wraps for special occasions. I count special occasions as things like “Ooh. Look. Today is National Pizza Day. I should have pretty nails.”

    No, really. Today is National Pizza Day.

    I tried red nails for the first time this year. I really liked them, but it’s a look for when my nails are at their best. Currently, I’m regrowing from a batch of breaking, which happens with clock-like regularity. Sadly, my nails peel and split or shatter outright which makes wanting to do more than the most basic care difficult to muster.