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Tag Archives: Medication

Medication: Round Two

04 Friday Sep 2026

Posted by Tim Hughes Living with CML in Cancer, Leukemia, Life, Uncategorized, Weather

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adventure, Cleaning, Doctor, Fatigue, garden, gardening, health, Heat, Life, Medication, Nature, Oncologist, plants, Rain, Weather, writing, Yardwork

After having a discussion with my oncologist, he wanted me to stay off the meds for a few days before starting them again. So, after being off the medication for those few days, I started back on it last Tuesday night.

The thought was that if any side effects were going to reappear after restarting the medication, they would probably show their ugly faces sometime Thursday or Friday morning. Well, it’s Friday afternoon, and so far, the only side effect I’m feeling is a little fatigue. I can handle that.

I haven’t really felt like doing much other than sitting around and reading, but I finally decided I needed to get up and start moving around.

I’ve started doing some more cleaning in the garage since I haven’t been able to do much out there with everything that’s been going on, including my daughter being in the hospital. I’ve also been trying to get a little yard work done.

Today, after breakfast, I got the hose out, hooked up the sprinkler, and started watering my front yard.

Apparently, Moses is out there somewhere with his arms stretched out, parting the rain and making sure it doesn’t fall on my yard. It’s raining everywhere else, but not here.

After securing the hose to the house and the other end to the sprinkler, I turned the water on. Then I had to sit down for a few minutes and rest up. With the heat we’re experiencing here—100 degrees plus—and the fatigue from the medication, it doesn’t take much to wear me out.

While the sprinkler was doing its thing, I stepped into the garage and started doing some much-needed cleaning. Although it’s a little bit of a “rob Peter to pay Paul” situation, I am making some progress.

I was able to make the path from my basement door to the house door much wider, so you’re a lot less likely to trip and fall. That may not sound like a major accomplishment, but when you’re trying to keep a garage organized, sometimes making a path you can actually walk through feels like a pretty big victory.

Of course, with this heat, even in the garage, it’s hard to do much without having to sit down and rest for a while.

After about three hours of watering the yard, I finally stopped the garage cleaning, turned off the water, and secured the hose.

Even with the heat and the fatigue, I managed to get a few things accomplished today. That feels pretty good.

I didn’t make it to the men’s Bible study last Saturday, so I’m looking forward to the fellowship tomorrow morning—assuming my side effects continue to cooperate.

Anytime you have a different medication introduced into your system, it’s always a good idea to pay attention to what your body is telling you and to be aware of the possible side effects. It’s also important to let your doctor know about anything unusual you’re experiencing.

One thing I learned from a lady who was part of the original clinical trial for one of the medications I was on at one time really stuck with me.

She explained that if, at any time during the study, someone came in with any kind of ailment—a headache, a stomachache, a rash, anything—it went into the report. If enough people came in reporting the same issue, regardless of whether it actually had anything to do with the medication or not, it could eventually become listed as a possible side effect.

That’s one reason it’s so important to pay attention, speak up, and keep your doctor informed.

For now, I’m taking things one day at a time, trying to stay active when I can, and being thankful that the dizziness hasn’t returned. Hopefully, things will continue moving in the right direction.

Listen to What Your Body is Telling You.

30 Sunday Aug 2026

Posted by Tim Hughes Living with CML in Cancer, Kayaking, Leukemia, Life, Uncategorized

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Body, CML, Dizziness, Doctor, Family, Fatigue, Fishing, health, Kayaking, Life, Medication, Mental, mental-health, Reaction, writing

I was reminded of that today while reading a blog post I follow. Hazel reminded me that no matter what I’m doing, I need to listen to what my body is telling me. Sometimes we have a tendency to push through things, thinking we’ll be okay. Other times, our bodies have a way of making it very clear that we need to slow down.

Mine has been doing a pretty good job of getting my attention lately.

I started a new medication for my CML last Thursday. I’m taking two tablets, 40 mg each. I’m supposed to take them on an empty stomach, with no food for two hours before and at least one hour after taking them. I took them at bedtime both Thursday and Friday.

Friday night was rough.

I had a very restless night and finally decided to get out of bed around 3 a.m.—or at least I attempted to.

I sat up and immediately became dizzy. I sat there for a few minutes and waited for it to pass. When I finally stood up, the dizziness returned, and I nearly hit the floor. I grabbed the wall to keep myself upright and waited another couple of minutes before attempting to move.

Eventually, I made it to the den and collapsed into my recliner. I was exhausted. I felt like I had absolutely nothing left in the tank.

I tried going back to sleep, but I couldn’t get comfortable. I decided I would read for a while, but, of course, my glasses were in the bedroom.

I really, really didn’t want to get back up.

I knew what was probably going to happen.

Sure enough, when I stood up, the dizziness hit again. I nearly fell backward into the recliner. I grabbed hold of something and waited for it to subside. After a minute or so, I was able to make my way to the bedroom, retrieve my glasses and return to the den.

By the time I got back to my chair, I was wondering if I had enough energy to make the trip again if I had forgotten something.

Around 5 a.m., I finally decided I needed to find out exactly what might be going on. I made my way to the kitchen and retrieved the medication information packet that came with the prescription.

I started reading through the list of possible side effects.

Number three was dizziness and feeling faint.

Bingo.

Unfortunately, there was nothing listed specifically about fatigue. Later, I learned that fatigue is a side effect associated with many cancer medications, so apparently I managed to get a two-for-one special.

Dizziness and fatigue.

Just what I was hoping for.

I texted the guys in our Saturday morning Bible study group and told them not to expect me. I explained that I believed I was experiencing side effects from the new medication and that I simply wasn’t feeling well.

I spent most of the rest of the day in my recliner, getting up only when I absolutely had to.

I slept a little better Saturday night, but I’m still dealing with the fatigue and dizziness when I stand. Because of that, I didn’t go to church this morning either. Thankfully, I was able to watch the service on YouTube.

I had been thinking about going fishing Monday.

I’ve changed my mind.

At this point, I seriously doubt I’ll feel up to it. And honestly, I don’t think getting into a kayak while I’m dizzy is exactly what my doctor would recommend. Besides, I’m pretty sure the fish would take advantage of the situation and laugh at me.

I don’t have any appointments until Tuesday morning Bible study, and I’m really hoping I’ll be feeling better by then.

I’m also not taking any more of this medication until I speak with my oncologist on Monday. I want to talk with him about what happened and see what my options are. Maybe there is a way to adjust the dosage so that the medication can still do what it’s supposed to do without making me feel like I’m one wrong step away from becoming a human tumbleweed.

I’ve spent a lot of years dealing with CML and everything that comes with it. I know how important it is to take the medication and follow the treatment plan.

But I’m also learning that following the plan doesn’t mean ignoring what my body is telling me.

Sometimes you have to stop, pay attention and say, “Something isn’t right.”

That’s where I am right now.

So, for the moment, I’m going to listen to my body, stay in my recliner, and let my oncologist help me figure out what comes next.

Maybe the fishing rod can wait a few more days.

The fish aren’t going anywhere.

Well… at least I hope they aren’t.

The 80/20 Decision

19 Wednesday Aug 2026

Posted by Tim Hughes Living with CML in Cancer, Leukemia, Life, Uncategorized

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Asleep, Benadryl, Cancer, Cliff Notes, Doctor, Drug, health, infusion, Iron, Kendle, Leukemia, Life, Medication, mental-health, Oncologist, Reading, Side Effects, writing

I had an iron infusion today. Before I went to the treatment room, I was unexpectedly led to an exam room, where I waited for several minutes.

I was beginning to get a little concerned because I had another doctor’s appointment later in the afternoon, and I really didn’t want to be late. My normal infusions take approximately two hours, so I had a right to be concerned.

Eventually, my doctor stuck his head in the door and told me he needed to see me, but it would have to wait until after my infusion. He assured me that the information he had for me wasn’t bad.

Of course, there’s nothing quite like a doctor telling you, “It’s not bad,” and then walking away.

That statement may be reassuring to him, but my brain immediately responded with, “Well, if it’s not bad, why can’t you tell me now?”

My infusion itself went according to plan. They gave me Benadryl as a precautionary measure, and within a few minutes, I was sound asleep.

I always bring my Kindle with me so I can read while I’m getting my infusion.

I don’t know why.

I think I have brought that Kindle to every infusion I’ve had, and I’m pretty sure the most I’ve ever accomplished was getting past the title page.

At this point, the Kindle is basically just an expensive security blanket.

I should probably start bringing a pillow instead.

Once the infusion was finished, I finally got to meet with my oncologist.

Thankfully, the meeting wasn’t nearly as bad as I had imagined.

It was about that one marker that just can’t seem to behave itself. Apparently, there is a new drug available, and my doctor would like me to consider trying it. He gave me some literature to take home and asked me to let him know by next week whether I want to give it a try.

The biggest reason he wants me to consider it is the success rate. According to what he told me, about 80 percent of the people who take this drug can be free of the cancer within five years.

Eighty percent.

That’s pretty encouraging.

Then there’s the other 20 percent.

Those are the people who will have to remain on some type of medication for the rest of their lives.

And, knowing my luck, I’ll probably be sitting in the 20 percent section.

I can see it now.

“Congratulations! You have been selected for the premium medication package. Unfortunately, there is no prize.”

Of course, I’m joking…mostly.

There are also some potential side effects that I need to consider. Upon first inspection, there are concerns about pancreatitis, heart problems, and kidney problems.

Unfortunately, those aren’t exactly unfamiliar words to me. Most of these are things that I’m already dealing with or being constantly monitored for.

Apparently, my body likes to keep my doctors employed.

That’s probably one of the reasons I’m hesitant to make a quick decision.

My doctor gave me some literature to take home and read so I can make an informed decision.

I’ll probably need the “Cliff Notes” version to fully understand what I’m reading.

Medical literature has a way of taking something that could probably be explained in three sentences and turning it into twelve pages of words that require a medical degree, a dictionary, and possibly a translator.

I’m sure somewhere in those pages it will say something like, “This medication may cause some serious side effects.”

Then I’ll spend the next three hours wondering if a headache means I’m dying.

On the other hand, the possibility of eventually being free of the cancer is hard to ignore.

I’ve been dealing with this for years, so the thought of taking a different medication with the possibility of reaching that point is certainly appealing.

Now I have a week to read through the information, think about it, and probably drive myself crazy trying to decide what I should do.

I suppose that’s the downside of being given choices.

Sometimes it’s easier when someone else just tells you what to do.

For now, I’m going to read the literature, talk to my doctor if I have questions, and try not to let my imagination get the best of me.

After all, I’ve already spent two hours today worrying about news that turned out not to be bad.

I might as well give my brain a little time off before it starts worrying about the next thing.

And if anyone needs me, I’ll be over here reading my “Cliff Notes”…

assuming I can figure out what the Cliff Notes are saying.

When Your Body Says, “Enough”

28 Sunday Jun 2026

Posted by Tim Hughes Living with CML in Amateur Radio, Disability, Fishing, Kayaking, Life, Uncategorized

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Amateur Radio, Back Pain, Bass, Church, Emergency, Family, Field Day, Fishing, Grass Cutting, Kayaking, Lawn, Life, Medication, mental-health, Mower, Pain, Physical Therapy, Travel, writing

It’s been a few days since my last entry. Between other family matters and life’s daily responsibilities, I’ve been too busy to sit down and write.

I did get the opportunity to go fishing for a couple of hours last Thursday, but I didn’t have much luck. I only caught two fish before my back started hurting, forcing me to cut my trip short.

Before heading out to fish, I had taken the time on Wednesday to load up my riding lawnmower so I could go to my dad’s house and cut his grass. If my back wasn’t hurting enough after Thursday’s fishing trip, it was screaming by the end of the day Friday. It took me nearly four hours to cut his lawn, and all that bouncing around on the mower certainly didn’t do me any favors.

Saturday started much better. After spending a couple of hours with our Saturday morning men’s group, I headed to Pell City, about 50 minutes from home, for Field Day. Field Day is an annual HAM radio event where Amateur Radio operators practice and sharpen their emergency communication skills. Thankfully, I was able to sit for most of the day, which gave my back a much-needed break.

Then came Sunday.

The pain returned during the church service, and it became so intense that I thought I was going to have to leave and wait it out in my truck. Fortunately, I found some pain medication in my backpack, and after a little while, it started to take the edge off.

In two weeks, I begin physical therapy in hopes that stretching and strengthening my back will provide some relief. I can’t have another RFA procedure for another six months, so I’m hoping therapy will help bridge the gap. Something has to give because I’m growing tired of letting my back decide what I can and can’t do.

When Plans Change, and Priorities Don’t

02 Saturday May 2026

Posted by Tim Hughes Living with CML in Family, Life, Uncategorized

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Family, Fuse, health, Heating, HVAC, Life, Medication, mental-health, No AC, No Heat, Pain, Pain pill, Parents, Transformer, Troubleshooting, Wireing, writing

There comes a time in your life when you realize things don’t always go according to plan. Life has a way of stepping in, throwing a wrench into your day, and reminding you that some things matter more than whatever you had written on your to-do list.

I’m not sure if I’m making myself clear, but let me try to explain.

Growing up, my parents were the kind of people who would drop everything to help their kids. It didn’t matter what they had going on, how they felt, or what time it was—if we needed them, they were there.

My dad worked evening and late shifts most of my childhood, so I didn’t see him much during the week. He spent most of his days sleeping so he could work through the night. But even then, if I needed him, he showed up. The same goes for my mom. Between the two of them, there was never a moment when I felt like I had to figure things out alone.

Well… now it’s my turn.

Today wasn’t exactly a great day for me physically. When I woke up at 5:30 this morning, my back pain was already making its presence known. I rolled over and went back to sleep, hoping for some relief. By 9:30, I had no choice but to get up—and it hurt. A lot.

I had taken a pain pill the night before, which is probably the only reason I slept that long. After getting dressed and making some coffee, I sat down to start my morning devotion. That’s when my dad called.

His brand-new HVAC unit wasn’t working. The thermostat was completely blank. No heat, no air—nothing.

On a pain scale, I was sitting at a solid 8. I seriously considered taking another pain pill after breakfast, but I knew that if I did, I wouldn’t be in any condition to drive. And at that moment, my dad needed help.

So I skipped the pill.

I scarfed down a bowl of cereal, grabbed what tools I thought I’d need, and headed out the door. I called my wife as I pulled onto the main road to let her know what was going on.

When I got there, the first thing I checked was the thermostat… and of course, it was working perfectly. Lit up, responsive, doing exactly what it was supposed to do. I switched it to cool—worked fine. Switched it to heat—no problem.

You can’t fix what isn’t broken… at least not right away.

After some troubleshooting, I narrowed it down to a possible issue with the condensate pump—one of the few things that could interrupt power to the low-voltage system.

Sure enough, the pump was full of buildup from years of use. I disconnected it and took it to the sink to clean it out.

That’s when things got interesting.

As I was reconnecting the wiring, one of the low-voltage wires brushed against the unit… and sparks flew.

If there wasn’t a problem before, there definitely was now.

I had officially upgraded the situation from “simple service call” to “well… that escalated quickly.”

Now the real fun began—finding that fuse.

There was a resettable fuse on the transformer, but it hadn’t tripped. Which meant one thing: somewhere inside that unit was a tiny little 3-amp fuse… hiding… laughing… probably calling its fuse friends to come watch.

And let me tell you, whoever designed that unit clearly never had to actually work on it.

This thing was tucked behind the control board in a spot that required either:

  1. Much smaller hands
  2. A double-jointed wrist
  3. Or a strong prayer life

I tried reaching it from one angle—nope. Another angle—still nope. At one point, I’m pretty sure I invented two brand-new yoga poses that will never make it into a class.

After what felt like an episode of “HVAC: Mission Impossible”, I finally laid eyes on it.

Victory… briefly.

Because of course… I didn’t have a spare.

Naturally.

So off I went to the auto parts store, where I got to buy an entire assortment pack of fuses—ranging from “barely useful” to “I may never need this in my lifetime”—just to get that one tiny 3-amp fuse.

But hey, if anyone within a 5-mile radius blows a fuse anytime soon, I’m officially their guy.

Before putting the new fuse in, I double-checked everything to make sure I hadn’t accidentally created a bigger problem (because at this point, that felt like a real possibility).

Once I was confident, I slid the fuse into place…

And just like that—it worked.

Like nothing had ever happened.

By this point, my back was absolutely screaming. There was no time for small talk or hanging around. I packed up my tools, said my goodbyes, and made my way back home—straight to my recliner.

I did what needed to be done.

I pushed through the pain because that’s exactly what my parents would have done for me.

Funny how life comes full circle like that.

Tomorrow’s Bible study has been canceled since everyone’s out of town, so I’ll be taking that as a sign to rest.

And hopefully… just hopefully… the phone stays quiet.

From Handy Man to Recliner Champion

05 Sunday Apr 2026

Posted by Tim Hughes Living with CML in Family, Life, Uncategorized

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adventure, Back Pain, Coffee, Easter, Family, Flashlight, Heating Pad, leak, Life, love, Medication, Over Medicated, Plumbing, Reliner, Toilet, Tools, Water Leak, writing

The beginning of my Easter weekend started out simple enough—help my son check on a leak in his slab.

Now, when someone says “just come take a look,” you picture a quick in-and-out job. Maybe a loose-fitting, maybe something obvious. Ten minutes, tops. You feel confident. Capable. Like a man who knows where his flashlight is.

What you don’t expect… is a full-blown plumbing adventure.

Since I was only supposed to be looking for a leak, I made the brilliant decision to leave all my tools at home. Normally, they live in my truck, but since I recently had some body work done, everything got unloaded—and apparently, my motivation to reload it went with it.

That decision came back to haunt me almost immediately.

Before heading to my son’s house, I had already been given my “honey-do” list for the day. My wife wanted a new overhead kitchen light installed and the handrails painted before our Easter guests arrived. So, naturally, I thought, “Let me just swing by, find this leak real quick, and get back home.”

Famous last words.

I picked up the light and paint, called my son, and headed over. When I got there, I grabbed the one and only tool I thought I’d need… my flashlight.

That flashlight and I were about to be very disappointed.

When I walked in, I found my son wrestling with a toilet. Not just any toilet—this was one of those “engineered by someone who hates plumbers” models. You know the kind. The connections are hidden, your hands don’t fit, and nothing is where it should be.

He was trying to replace the flush valve, and what should have been a simple job turned into a puzzle designed by a madman. You couldn’t even get your hand behind the tank to reach the nut. At one point, I ended up breaking the old valve just to get it out… which is always a confidence booster.

Eventually, he told me he had it under control, so I went back to my original mission: finding the world’s most elusive water leak.

About 15 minutes in, I heard some… colorful language coming from the bathroom.

That’s never a good sign.

Turns out, he was now fighting the same battle we just had—getting the new valve tight enough without being able to reach the nut. And since all my tools were sitting comfortably in my garage at home, we were working with whatever he had lying around… which wasn’t much.

After some struggling, twisting, and me contorting my body into shapes it was never designed to make, we admitted defeat and made a trip to the hardware store for some “special” wrenches.

Spoiler alert: they helped… but not much.

Eventually, through persistence, determination, and probably a little bit of stubbornness, we got the valve installed without leaks. Victory was ours… and so was the back pain.

Once I finally made it back home, it was time to tackle my original assignment. With my wife’s help, I replaced the kitchen light, then moved on to painting the handrails… along with a good portion of my shirt. Apparently, I believe in fully committing to a project—whether I mean to or not.

After finishing up, I rewarded myself the only way I know how: parked in my recliner, heating pad in place, enjoying the first of several cups of coffee like I had just completed a home improvement marathon—which, in my mind, I had.

Later that night, I took my meds as usual and noticed something looked a little off. Turns out, in the chaos of cleaning and rearranging, my medications got mixed up—and instead of taking my sodium bicarbonate, I doubled up on my muscle relaxers.

Now, if you’ve never done that before, let me tell you… It turns your entire next day into a slow-motion documentary.

I spent most of Easter in a fog.

Thankfully, it was a good kind of day. We had family over—my son and his girlfriend, my daughter and future son-in-law, and even her sister. There was food, laughter, and the added bonus of some first-time introductions.

It was one of those moments where everything just feels right.

Even if you’re slightly sedated.

After everyone left, I curled up in my recliner and took a much-needed nap.

Because sometimes the best way to end a long weekend of fixing everything for everyone else…
is to finally sit still long enough to not break anything else.

From Toughing It Out to Tapping Out by 10:30 AM

28 Saturday Mar 2026

Posted by Tim Hughes Living with CML in Life, Twins, Uncategorized, Woodworking

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adventure, Back Pain, Doctor, Drowsy, Family, health, Life, Medication, mental-health, Muscle, Pain', Reaction, Relaxer, Sleep, Tolerance, writing

I’ve always considered myself pretty good at dealing with pain. Not superhero-level or anything, but enough to where I can usually just shrug it off and keep going.

My wife, on the other hand… well, let’s just say pain and her are not exactly best friends.

Now, before I get myself in trouble, I should point out that she did go through childbirth twice—once with twins—so when the moment calls for it, she can absolutely tough it out. She just prefers not to make a hobby out of it like I apparently do.

As for me, I’ve been dealing with this back pain for as long as I can remember. Never really complained much about it. I just chalked it up to muscle fatigue, getting older, or doing something dumb and pretending I didn’t.

Turns out… muscle fatigue was not the issue.

According to the latest X-rays, this has been something a little more “interesting” all along. And lately, just to keep things exciting, the pain decided to crank itself up over the past month.

Naturally, my pain tolerance—once my greatest ally—has started waving the white flag. So today, I finally broke down and reached for the pain meds.

At the doctor’s office the other day, they gave me a steroid shot, and I have to admit—it worked. Yesterday morning, I got out of bed without feeling like someone was stabbing me in the back. It was a beautiful, almost spiritual experience.

This morning? Not so much.

That shot wore off like a good dream, and reality came back with a vengeance.

On top of that, I was prescribed Methocarbamol—a muscle relaxer. The doctor told me, “Take it at bedtime… and during the day if you need it. Just be aware it might make you drowsy.”

Might.

Last night, I took one and thought, “This isn’t so bad.” I stayed awake for a while and figured I was in the clear.

This morning, after wrestling my way out of bed, I decided to take another before heading to Bible study.

Thirty minutes later… I was unconscious in the recliner.

Not “a little sleepy.” Not “slightly drowsy.” I mean full-on, lights out, someone-check-my-pulse kind of asleep.

My wife had to come wake me up so I could even attempt to get ready. I made it to Bible study, but staying awake was more of a suggestion than a reality.

By the time I got back home, I sat down in the recliner—and that’s about all I remember.

My day officially ended at 10:30 in the morning.

All the plans I had for the day? Gone. Completely wiped out. The only thing I accomplished was catching up on all the sleep I’ve been missing from staying up late and getting up early preparing for these craft shows.

So I guess… not a total loss?

Tomorrow is church, and after that, I’ve got a big date planned with my recliner and heating pad. We’ve grown very close lately.

With a little rest (and maybe slightly less “effective” medication), I’m hoping by Monday I can get back to working on the projects that didn’t stand a chance today.

Until then, I’ll be right here—taking it easy and trying not to accidentally time-travel to the next day every time I take my medicine.

Insurance Knows Best… Supposedly

25 Wednesday Feb 2026

Posted by Tim Hughes Living with CML in Cancer, Diabetic, Disability, Family, Leukemia, Life, Photography, Retirement, Uncategorized

≈ 2 Comments

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co-pay, cost, Diagnoses, Doctors, Drugs, health, health-insurance, healthcare, Insurance, Medicare, Medication, Pharmacy, prescriptions, rejection, research

Doctor Says Yes… Insurance Says “We’ll Think About It”

Photo by Anna Shvets on Pexels.com

Doctors, diagnoses, prescriptions, Medicare, insurance, and denial — those are words that seem to follow me around these days. Sometimes I think dealing with the medical system is almost a full-time job. If they paid by the appointment, I’d be drawing a salary by now.

One thing I’ve never quite understood is how a doctor can go to school for years, train for years more, examine you personally, and decide what medication you need — only for the insurance company to step in and say, “Nope, we don’t think so.”

Apparently, somewhere a person is sitting behind a desk who knows more about my condition than the doctor who actually saw me.

I worked for a health insurance company for 32 years before I retired. I was in the maintenance department, which meant I fixed things like doors and lights — not insurance claims. Still, people who knew where I worked would often ask me why their medication was denied even though their doctor prescribed it.

I always had to explain that just because I worked there didn’t mean I knew anything about insurance decisions.

Truth be told, I still don’t.

A good example is what happened recently with my son. He was prescribed medication for severe sleep deprivation. His previous insurance covered it, and he was happy because they had finally found something that actually worked.

Then he changed jobs.

His new insurance company now says the medication is “not medically necessary.” I guess sleeping is optional now.

The doctors now think he might have sleep apnea and ordered a sleep study. Before he even got scheduled, he got a phone call saying the test would cost over $2,000 because his insurance wouldn’t cover it.

He’s a young man with a mortgage, a car payment, and utility bills. In other words, he’s living in the real world — the one where people don’t just have $2,000 laying around for a test that might help them sleep at night.

Meanwhile, I realize I’m one of the fortunate ones. Because of my disabilities, I qualify for Medicare, and because I worked for an insurance company, I retired with a good supplemental plan. That combination gives me coverage that many people would love to have.

I don’t pay co-pays for doctor visits. I don’t pay for emergency room visits. Every time I leave the hospital, the bill says I owe exactly zero dollars, which is my favorite number.

I do pay for some medications, but not a lot.

One medication I take costs about $20,000 for a 30-day supply.

Yes, twenty thousand dollars.

For that price, I feel like it ought to come with a steak dinner and a weekend vacation.

Fortunately, the drug company offers a $0 co-pay card because they know insurance only pays part of the cost. Thanks to that program, I don’t pay a penny for a medication that costs more than some cars.

I consider myself blessed, because there are people who need this same drug and simply can’t get it because they don’t have the right insurance. That part isn’t funny at all.

When I ask why the drug costs so much, I’m told it’s because of all the research that went into developing it. I understand that research costs money, but sometimes I wonder if the scientists also built a few vacation homes along the way.

After being on this medication for a while, I feel like I’ve personally contributed a pretty fair share toward paying for that research — and I know some folks have been on it a lot longer than I have.

I don’t know what the answer is. Doctors are trying to help people. Insurance companies are trying to control costs. Drug companies are trying to recover research money.

And patients are just trying to stay alive without going broke in the process.

Maybe one day there will be a system where if your doctor says you need something, you can actually get it without filling out forms, making phone calls, and saying a small prayer first.

Until then, I guess we’ll just keep taking our prescriptions — and a healthy dose of patience right along with them.

Five Month Post Op

28 Saturday Sep 2024

Posted by Tim Hughes Living with CML in bariatric-surgery, Diabetic, diet, Pets, Retirement, Weight Loss

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Cat, Medication, Soda, Surgery, Sweets, Vet, Weighloss

On September 24th I weighed 206.6 lbs, down 54 lbs since April and down 75 lbs since January. Things are still progressing, slow, but still progressing. I’m averaging about 10 lbs a month. It’s been five months since I’ve had any sugary drinks or sweets. I do, however, drink what I call yellow-capped Milo’s tea. It’s sweetened with Splenda I think. The money I’ve saved just by not buying the soft drinks, Little Debby cakes has helped. Also, not having to take all the extra meds has reduced my pharmacy bill greatly.

Since my surgery, my breathing has improved 100 percent. I guess my lungs were being compressed by my stomach and since the repair, I can tell the difference. I’ve been trying to walk about an hour each day. This boot does make it more difficult though. I had to make an appointment with my orthopedic doctor the other day because my left foot’s ankle had swollen. I immediately contacted my doctor and made an appointment. I was so worried that I was about to go through the same thing with my left foot that I went through on my right. It was just an aggravated tendon, and he made some adjustments to my shoe insert.

I had lunch with some of the guys that I used to work with before I retired the other day. It was good to see them. When I was signed in one of my co-workers asked what I did with the rest of my body? None of them had seen me in over two years or before COVID-19 hit.

I’d like to thank everyone who took the time to vote for the picture of my cat Clyde. He made it to the semi-finals and didn’t make the cut. Clyde has been sort of puny as of late. He spent four days at the vet trying to get rid of a UTI. We hated to have to leave him because he does not do well being boarded. We did go and visit with him every day just so that he wouldn’t think that we had abandoned him. It was really tough seeing him on that last day because all he wanted to do was find an escape route. I’m glad to have him home again with us. I know he’s nearly 20 years old and I know he won’t be with us too much longer. Every day with him is a blessing. It will be hard when he does cross that rainbow bridge.

Everyday is a Blessed Day!

11 Friday Jan 2019

Posted by Tim Hughes Living with CML in Cancer, Leukemia, Photography

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Cancer, Drugs, Leukemia, Medication, Medicine

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It’s been nearly five years since my diagnoses of CML, a form of Leukemia.  If I had received the diagnosis back in the 1990’s I would have been told to go home and make my funeral arrangements.  With today’s modern medical advancements, which I’m highly thankful for, those of us with this diagnosis are able to live a somewhat normal life for many years.

There is a “go-to drug” called Glevic that is prescribed to most all new patients.  This drug worked for me for a while but stopped and I had to find something else.  The next drug caused more problems than the actual cancer did.  This new drug I’m on is working for now but is causing fluid around my heart and lungs but not as bad as the previous drug.

Is my life back to normal, no.  There have been many changes that had to be made to make my life a little better.  Because of the fluid around my heart and lungs, I’m no longer able to do a lot of the things I used to do.  Basically, I had to stop anything that would cause me to get out of breath with exertion.  That doesn’t mean I’ve given up.  I still try to walk and stay active. Every morning that I wake up I feel blessed to still be here. I’ve got a lot to live for and I hope I’m here for a while to come.

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