Carpe dat diem

“The trouble is, you think you have time” — Jack Kornfield

but you don’t.

Time is the one commodity in our lives we can’t make more of when we’re out. Once it’s gone it’s gone. That’s it.

So get up and carpe dat diem already.

There’s a Tiny Child Buddha that lives on my desk

To misquote Sheldon Cooper on Big Bang Theory, “Tiny Buddha. Save me.”

It is the Pocket Buddha of prosperity. It lives there because it makes me smile, but also because it reminds me that every day I need to take a moment appreciate how fortunate I am, because all things considered, I am quite fortunate. It’s there to remind me to appreciate the little things. Breathing, for example.

Breathing is a privilege in my world, not a right, and I get to do it.

My new asthma medication is Breo. We tried every other less expensive medication available to get my asthma back under control. This was the only one medication that we found that’s worked.

Per It has an average cost of $399.80 for a month’s supply as of today’s date. Because I have a manufacturer’s coupon and insurance, I’m only seeing $10 of that cost out of my pocket. The rest is being covered by my insurance company. If I didn’t have insurance, that coupon would be $100 off my medication.

$100 off of an average of $399.80. That’s still $299.80. Who has $300/month for a maintenance medication?

What’s the alternative, really?

The coupon lasts for a year. It feels like the drug company is standing on a street corner saying “Try a taste, baby. You know you’ll like it. First one’s (practically) free.”

Now, we’re retesting my lung function in August. Spirometry costs: $1100. My portion of that is $482, which I know because we did it once already this year. That’s $482 to breathe in a tube and possibly have an asthma attack during the test because I have exercise induced asthma. Who wants to spend $482 to spin the Wheel of Asthma? No one, but there’s no other way to measure lung function.

With any luck, I’ll be able to convince my pulmonologist that my asthma is controlled again we can try to go back to my old care regime, which was two puffs of albuterol before exercise. With any luck, my asthma will go back to being controlled in the first place, and I won’t just be trying to convince her that I can’t afford to be on this medication because of what it’s doing to the overall cost of health care.

Then I can go back to just worrying about how I’m going to afford the proposed $4000+ asthma surcharge that insurance companies would like to add to my insurance costs because I lost the genetic lottery and I have asthma. Heaven help you if you have had a heart attack or cancer.

Insurance companies only make money when you’re well. Pharmaceutical companies only make money from the sick, in part from insurance companies who are trying to preserve their profit margins by passing more and more of the cost to the consumer.

All I want to do is breathe.

The other N word

I have trouble saying “No,” especially at The Day Job. This has led me to a point where I’m working enough overtime that I’m finding it physically taxing. 

It’s bad enough I can’t compensate for (read: hide) it anymore. The roommate has taken me aside to talk to me about the fact that I need to take care of myself. I need to say no to things.

I don’t know how to do this. No is treated like a dirty word, especially when it comes from a woman. I don’t think it’s intentional. People say “you should say no to things,” but when you say no to them, it’s a different matter. 

I want to say:  No, I really can’t take on one more task for the program right now. I’m not eating lunch. I can barely get away from my desk to go to the bathroom because I’m so busy. Exactly when am I going to get just one more thing done? Staying late? You know I’m already here late, right?

I say: Just put it on my desk. I’ll figure out how to get it done. When do you need it by?

I read an article in Fortune that said women in leadership who say no are seen as cold and ruthless, but men who say no are strong and capable. It’s not just women in leadership. Saying no at work hurts a woman’s image, no matter what her role at work is.

I want to say: No, I don’t want to do anything tonight. This was planned last week and I’m just now hearing about it? I have other plans. Curling up on the couch with a cat and a book and drinking tea is a plan. It’s a mighty fine plan at that.

I say: I’ll dump more caffeine in the system to keep it running. Rest is for the weak anyway. 

Hell, I should be sleeping now, but I can’t. I’ve got a migraine because I’m so tired, but I can’t sleep because I have a migraine and I’m afraid to try to take a naproxen for it because naproxen is hard on the kidneys. 

For the past three nights I’ve been using the heating pad on the small of my back and Biofreeze at the base of my skull because I’m terrified of doing anything that might tax my kidneys too much.

It’s my kidneys that have me trying to sort this whole “No” thing out in the first place. It’s disheartening to feel like I’m living my whole life around protecting my ability to process the toxins out of my body. 

My roommate is right, of course. I need to say no to things in order to get the rest and recovery time I need to maintain my health.

It just feels like I’m Kryten trying to swear when I try to say no.

Damn you, kidneys. You’re not playing fair. The fatigue gets crushing far more quickly than it ever did. I can’t run on borrowed energy anymore. I don’t have any energy to spare.
If you need to find me, I guess I’ll be sitting in the canteen with flash cards practicing saying the other N word. 


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 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.

That breathing thing

I like to think there’s a moment in everyone’s life where they realize that there’s some aspect of their health they cannot get under control without medical intervention. Maybe it’s critical, acute illness that sweeps them to the emergency room. For me, it’s that breathing thing that everyone else seems to do without any problems.

I went back to the doctor again with this bronchitis/asthma loop that I’m stuck in and asked for a controller medication. It felt like a defeat to do it. I mean, it’s breathing. How hard can it be?

Pretty damned hard, actually.

I don’t smoke.While I do have allergies and live with four fuzzy allergens, I take an allergy med and don’t let the pets sleep in my room. I take my rescue inhaler before exercising. It shouldn’t be that hard. It’s been really hard. I spent the night before my doctor’s appointment using every trick I know for holding an asthma attack at bay because I knew I had an appointment in the morning and I didn’t want to pay for a trip to the emergency room.

I got lucky and it worked.

That said, I don’t ever want to spend another night like that. It was like the plane trip back from Athens, trying to just stay calm and keep the hot caffeinated beverages flowing in because I didn’t actually have a rescue inhaler at that point. It was before I was diagnosed with adult asthma. Only this time, I was dosing with the rescue inhaler, too.

Air goes in and out. Blood goes round and round. Any deviation from that is a problem. That’s the first rule of Emergency Medical Services. The air was not going in. When I could get it in, it didn’t want to stay in. Stay calm. Lay propped up. Picture the ocean. Picture not drowning in the ocean. Picture a warm breeze going in and flowing out. Drink another cup of tea. Relax. Relax. Relax. Count to four in. Count to eight out. Relax.

Things are bad enough we started with Symbicort. That’s a pretty serious prescription. Normally I would fight against a prescription of this type, but I need to breathe. The breathing thing, it’s not something I can just do without. Not without a fight.

26 Days Later

It’s been 26 days since I last sat at my computer and tried to write.

My knitting needles have fallen to the wayside. My fingers feel thick and unresponsive against the keyboard. My brain is a rusted windmill trying to turn in a dying breeze.

After a bit of back and forth between ourselves and not one, but two of the local internet providers, we managed to get the internet back on January 9. Original internet provider remains our current provider, despite the fact they first told us we wouldn’t be able to get anyone out to look at our internet before January 20.

Then I got The Day Job Crud, which turned into bronchitis. That, in turn, riled up my asthma, which made the bronchitis worse. Enter VICIOUS CIRCLE from stage left.

I ended up with three days off work to try to recover. Round one failed. I’m on my second go-round of antibiotics and steroids to try to heal things the rest of the way up and still managing to work 40-hour + weeks to try to keep things going with things at the day job.

Home has been a blur of dinner, laundry, and falling asleep reading because last night was the first night I’ve been able to lay down to sleep. Before Friday night, laying down was a good way to trigger a painful, endless coughing jag. Laying down to sleep is a real improvement.

Saturday night’s midnight asthma attack told me I still have a way to go before I’m 100%. I’m feeling better, though. That’s got to count for something.


Winter Solstice

I am sitting in the dark and I am tired. This year has been long, so very long. I honestly don’t know how I’ve managed to make it this far.

You may not have noticed it, but I’ve been battling with my health behind the scenes. I’ve been trying to keep everything appearing normal while we figure out what all is wrong and get it under control. Things aren’t under control by any stretch.

I’ve been trying to keep the depth of it from my friends, from my family, from this blog. Until I really know what’s wrong, I don’t want anyone to worry. I’m just so tired and the constant effort to keep up appearances? Some days it’s everything I can do just to keep up with The Day Job, let alone anyone and anything else.

It’s been a tough year for everyone. I know that. I don’t want to be a burden. I just don’t know how much longer I can keep up appearances.
It’s exhausting.
Tomorrow is my last official work day this year. After that, I’m on Winter Shutdown from The Day Job and won’t officially return to work until January 3. (I have a small Shutdown task to do, but I think that will only take part of a day next week.)

It’s the longest night of the year and I feel the depth of it in my marrow. Tomorrow the night will once again recede. I’ll get a few days of respite because of Shutdown. I need them to recharge.

Please let them be enough for me to recharge.