Motto of Clinics Everywhere: You Can Call Us, but We'll Never Call You

Hey, it's Friday and I'm still trying to line up medical care. Can I tell you how awesome it has been to make call after call, to be sure to have my phone always on me just so I can hear the silence of no one calling me back?

I am living the dream, people!

The situation is absolutely disgusting. I should probably write some letters complaining. Would it change anything though? I don't know.

I had similar run around issues getting the adrenal stuff diagnosed and treated. Endocrinology wouldn't see me without an internal referral (my insurance doesn't require one, but the hospital likes to think they are Kaiser Permanente or something) and Primary was like 'why do you need an endo? You want a referral for what?' while the pulmonologist, who had prescribed the steroids and done this to me in the first place, was 'why are you calling me? What do I have to do with this?'

Long time readers will recall I couldn't even finagle a blood test for HPA Suppression until six months after it started. (As a reminder, cortisol at 9 am was a 6 and ACTH was less than 5 and that was with 10mg of prednisone in my bloodstream, which, supposedly, artificially propped up my cortisol level.)

Something is really wrong with medical administration. The only time I can ever get an appointment is if it's 4 to 6 months in the future. Acute or urgent anything is shit outta luck.

I did end up with one appointment next week with my current GI. That finally got squared away on Thursday.

Of course, by then, I had called the fancy schmancy 'when we cut patients, they don't even bleed' pancreas clinic.

Now they haven't called me back. I'm on day three of trying to get a hold of them.

I am feeling like I want to leave my GI doctor, but there may be no place for me to go.

How Medicine Kills Patients

I spoke to two nurses yesterday who all sent messages to primary care. Nothing happened.

Still never heard back from GI.

Then, this morning, got a call from Primary Care. They referred me to GI.

Ha.

Anyway, Primary said my GI doc was out of the office, which is why I never heard back (allegedly) but they sent an urgent message to GI on my behalf so someone will see me asap (theoretically). Why the receptionist on Monday couldn't tell me any of this, I don't know.

Of course, when I called GI as instructed by Primary, my doctor is in and seeing patients. They even had an opening this morning, which, naturally, I missed.

BUT the person on the phone seemed half way competent and paged the GI doctor. They actually seemed to think this pancreas thing warranted some urgency. Hallelujah.

For my part, I called the hospital and requested they fax my CT scan stuff over, which they did the second I asked.

It's still going to take me the better part of week to get any medical care.

Sad to say, I live in an area with several major medical systems too. It really shouldn't be this hard.

I did find a pancreas clinic in town that might be a good stop for me in the near future.  They do coordinated care across specialties which sounds like heaven. I wonder if they return calls when established patients call?

Shouting in the Void

I'm still trying to get a hold of a doctor. At this point, any MD will do.

GI never called me back.

Primary Care's call center couldn't handle my request to speak with a nurse so I could sort out anything. I asked three times to speak to a nurse in my doctor's office and they couldn't compute.

They passed me off to the general call center who sent a message to Primary Care.

And one of the biggest criticisms of nationalized healthcare is no one will be able to see a doctor.

Well, I have have insurance in a private system and I can't even get anyone on the damn phone.

It's not the first time either.

There's not much difference between me and the uninsured right now. My main source of medical care is the ER at this point.

On the upside, I've been following a liquid, soft food low fat diet which has helped. Although, I'm starving as a result. Not to mention eating too much sugar, because low fat is also high carb by default.

There's a hospital system with same day appointments. If I can't get any response from the network I've been relying on today, I'm switching.

Crazy Town Full of Surprises

So, after I gained control of the asthma, I then caught a cold. Primarily due to stress. Both our elderly dogs tried to die three days before we were due to leave town on vacation. The sickest dog, of course, fell apart on Friday, which made it tough to find medical care.

Two vets and $1500 later...we had a wait and see situation. It looked like he had cancer in his spine or he might recover the ability to walk and be fine (don't you love medicine? So specific!). Since he needed to be crate rested, we boarded him with the second vet we saw on Saturday and went on vacation with heavy hearts.

However, the process of figuring all that out, going from 'we need to put him down' to 'he might be okay' really put my heart through the wringer. We had tickets to a Broadway play the night before we had a game plan and I was sobbing in our box seats before, during and after the play.

It was a comedy.

I made my husband cry.

Fun times.

Fortunately, our yellow lab is doing better. We don't know how long we'll have him around, though. His spine problems are pretty severe and he is advanced in years, meaning we aren't going to do much more than make him comfortable at this point in his life. For now, we're just focusing on loving him and plying him with delicious treats without making him fat (which he's on prednisone, so that's kind of tricky, but we're trying).

The stress, though of getting him squared away, took its toll. A few days into our vacation, I was sick. The asthma was bad with the cold, but I pulled through on my own with just the Symbicort and Albuterol. I did flirt with needing prednisone, but, thankfully, the asthma improved.

So vacation ended and we came back home where I had a routine blood pressure follow up. Well, routine quickly went out the window as I was diagnosed with a hernia that likely will need surgery.

Oh-kay. Did not see that coming, but it does explain a lot.

Unfortunately, after the physical exam where the doc shoved my gut this way and that, I had escalating abdominal pain. By last night, I couldn't even lay down without excruciating pain. Sitting and standing were better, but still with lots of heaviness and a dull ache.

I kept trying to go to bed, but the pain was too bad I couldn't stay flat. So I went to the ER convinced I was the beginning of the next Aliens movie.

Just because nothing can ever be simple, they couldn't find any reason for my abdominal pain except maybe I had early pancreatitis and.... the CT scan shows something on my pancreas.

In case you didn't know, that's pretty bad ju-ju. You don't want things on your pancreas. Ever.

They didn't say cancer. They said I need an MRI for a closer look.  (Let's all hope they weren't just being tactful.)

And it might not even be the source of my pain anyway.

Which I still have, although my abdomen did let me lay down finally around 5am this morning.

Naturally, my GI doc is booked through October. Apparently, they either don't have emergency appointment slots or I don't warrant one. 

A Week Later...

The asthma is mostly under control now. I put myself on bed rest the day before if finally came to heel. Day-to-day-life was just making things worse. I would have acute asthma for 7-8 hours a day, would get a short break and then it would kick back on again at night--all because I took the car to the mechanic, went grocery shopping, stopped at the bank etc... I need to do a better job of slowing down and resting more when the asthma acts up.

This was probably the most serious non-illness related asthma I've ever had. I could feel the swelling in my lungs, feel the margins narrowing.

Anyway, I can mostly breathe now. I started walking again and will build back up (again, sigh) to something tougher.

I'm still hypersensitive to smells which can trigger the asthma despite more than tripling the inhaled steroid dose I started out with.

Sleep is also a little weird and I'm tired as a result. It's better than it was, but the change in steroid dose is not without side effects.

So, as a result, this past week has mostly been sick time for me. I did some writing, but mostly just gave myself permission to take a break. I was too tired to feel bad about it.

Loss of Control

I'm on day three of shit sleep.

Why?

I had to increase the asthma meds.

I've been fantastic on just one puff of Pulmicort twice a day for something like the last six months. Perfect asthma control. Could not have been better.

Then we hit a heat wave and the ol' windbags did not like that.

Lots of air trapping. So I switched things up and it's better, sort of. The big downside is my body acts like one puff of Symbicort twice a day is the equivalent of 80mg of prednisone.

That means, not sleeping at night, I suddenly have restless leg syndrome in my right calf and my mind races like I took a whole bottle of caffeine pills.

And while things are better, I may need to up the dose again. The asthma is still not controlled. Not only was I up last night due to steroid side effects, I was hacking like an angry seal. Yesterday I was wheezing, but I'm hoping that's just because the temperature dropped by 50 degrees.

If money ever becomes no object, I should probably live somewhere with a stable climate. These temp swings are hard on me.

Anyway, today I slapped a spacer on the inhaler to, hopefully, tone down the systemic effects I'm having. I should have done that from the beginning, but I tend to forget all these little nuances of asthma management. I have to relearn the rules every time things change.

On the adrenal side...I'm mostly fine. I get a touch of adrenal weirdness now and then. Hard exercise can still be an issue so I mostly avoid it, although I've had a few workouts that were too much.

Okay, so here's the writing update. It's more fun than my body. If I could detach my brain from my defective flesh bag, I would totally do it.

-Still writing like crazy which means I now have carpal tunnel. Whee! In theory I'm going to take most of August off to rest my hands (this will probably not happen but I will try to let things heal as much as possible). I was doing great for several months and lifting 10lb free weights to condition my arms, but all of a sudden my hands just fell apart.

-I have releases lined up for the rest of the year and am actually ahead a bit, well except for the part where I was going to write a novel in another genre. That novel is not going so well. I'm behind on that, but otherwise on top of things. I've been trying to shift to a schedule where I'm working 3-6 months in advance for a while now, and it's a good feeling to know my releases are set through the end of the year. It's less stressful and gives me time to be sick.

-Asked a major name author to endorse one of my books. One of the advantages of knowing someone before they hit it big.

-I was approached by a publisher who asked me to write for them. You've heard of them. I turned them down. Not enough money and their marketing was sub par. I can make more money without them.

-Realized I really enjoy figuring out how to market books. I suggested some authors do a collaborative project and have been helping them pull it together. I expect it to hit the USA Today bestseller list at the very least (NY Times is a harder nut to crack). I just wish I could have an idea that would hit a list like that with my pseudonym on it, ha.  I'm also running various marketing experiments and coops with the writers I hang out with online. It's like a big puzzle and I find it fascinating (although in real life I hate doing anything more than a 24 piece puzzle).

-With regards to marketing I approached someone about a partnership for a reader marketing business.The goal is to build a revenue stream that is independent of me writing as well as create platforms that market my work. They accepted and we're in the process of hammering out the contract. Even though we're at the legal part, I am actually not sure if it's going to happen. If it does, it will be an interesting experience. I hope it is as profitable as I think it is.

-I'm sponsoring an art festival thingie that ties in with one of my books and finally came up with swag for the exhibitors. Phew. Almost did not pull that one off. Swag is tough when you're on a budget.

-My sales are in the toilet still and August will be worse. I won't panic though unless my fall releases tank.

Still Kicking

I'm still here! Working like a dog.

Health-wise...doing okay. The asthma is relatively dormant. BP is alright. Weight sucks. Energy is mostly good although I have occasional weirdness. I'm exercising.

I switched back to the birth control pill. The progesterone side effects were driving me crazy and I decided to try it and see. So far so good. PCOS is much better on the pill vs. progesterone. Like, no contest. Who knows what the future holds though?

The big down side is the pill messes with my gut in really unpleasant ways. Everything is a double edged sword, but I would rather just not take the pill or progeterone for a while than go back on progesterone. Assuming my energy holds steady.

The writing is going sooooo slooooowly. OMG. I will continue to be scarce. I'm trying to finish two novels, a couple novellas and a handful of short stories like yesterday. I can't publish the one novel until I write the second in case something in the series changes on me, so really I have to write three novels. The idea is to preserve the ability to go back and edit the story line if big things change.

At least until I'm more experienced with writing series. I never thought I would write a series, I'm more a 'one and done' writer, but this concept is rich enough to support multiple books, and my writing brain has come up with all sorts of plot points and connections between characters that are way bigger than one novel. Series are also where the money is at for authors, so that's a bonus.

I am having a good time. I like what I do. It's too bad it's so volatile. If I can't reach a more sustainable income level, I'll have to find another way to pay the bills. The good news is, I've gotten really good at marketing and building a platform. I have a fighting chance.

Hang in there health. Don't poop out on me now!

Now, back to the writing cave. And don't feel bad, my family barely sees me either these days. When/if my income ever recovers, I can slow down, but, until then, I'm a slave to the keyboard.