Gastro Appt

Super wiped right now. Stressful day. Hour and a half at ped doing the annual check up, which was draining for a variety of reasons. Then a mad dash home to get the toddler set up with a sitter and off to the gastro.

The deal is, I have pain but no relevant test results. There should be no pain. It's frustrating. I am on board with the idea that there's nothing wrong, but my body does not care and persists with this RUQ pain.

I will have an endoscopy with ultrasound. The GI Doc worded it very delicately and was super polite, but I gather that I was just too fat for the RUQ ultrasound they did earlier, so we'll do another one.

Ultrasounds must not be very sensitive because I ain't that fat no more. Or maybe my lard is just impenetrable.

I don't have IBS. There are no issues on the exit end, but I was prescribed an IBS anti-spasmodic anyway. I probably won't take it because the issue for me is not the pain, but that there is pain at all. I can mostly live with the pain so long as the GERD is controlled.

But there shouldn't be pain. Or heaviness.

My spidey sense feels strongly that there is something not right, but I have no idea what to do when the endoscopy and ultrasound come back normal. Push for a colonoscopy? Look at the ovarian cyst in there (although how it would make my gallbladder jerk like it was in a mosh pit, I don't know)?

Both the PCP and GI docs mentioned something about a surgical consult, which confuses me. Don't you see a surgeon to cut something out or is there some diagnostic angle that I am unaware of? Will they be able to find what the tests have missed?

What do surgeons do with patients with no diagnosis? Randomly remove organs?

I am in no hurry to have any surgery. I haven't even been off steroids for 2 months. If it's not an emergency, I'd rather just wait. My main concern is to be sure I'm safe, that this pain is not indicative of a serious pathology. It is so specific and chronic, it's hard to accept test results saying everything is fine.

Shock & Awe

So the toddler's PT and I are pretty chatty. Actually, I wouldn't mind staying in touch with them beyond therapy, but we'll see.

Anyway their kid was in the ER for a decently serious allergic reaction to an OTC that no one is ever supposed to be allergic to. So they ended up on steroids, a five day burst.

The ER doc took the time to explain how the steroids would impact the kid's appetite and weight.

At that point, my jaw hit the floor and I lost consciousness from the shock.

Wow.

Basically I'm pre-diabetic, overweight and having all sorts of medical fun because not one physician ever attempted to educate me on the impact of steroids.

I was never even given the chance to take personal responsibility for my health because medicine didn't do their part. Over and over and over again.

Of course, I did get shaming lectures on my weight from the ped who was prescribing the bulk of the steroids between the ages of 15-18. Medicine totally wins at hating fat people.

All Over the Place Update

I'm still here, just absolutely consumed with my goal of getting 2 novellas and a novel ready for publication before the end of the year. (Actually, yesterday would be ideal.) If you've ever written seriously, you know this is a huge task and it is very time consuming.

The cover came back for one novella and it is stunning. The response has been overwhelmingly positive and it has garnered attention in the best way. So #winning. (Yes that is a Twitter hashtag, I am now a Twit too.)

Right now, the novella is with an editor (the most affordable one I could find, crossing fingers they are as good as their sample seemed to indicate) and I expect to release it late August/early September.

For the next two weeks the toddler is going to Vacation Bible School to learn about Jesus while I write sex scenes. (That makes me giggle.)

I feel okay. Here is the interesting thing...

The weight loss has screeched to a halt and reversed itself a bit. My blood pressure has ratcheted up to 130/90 and I don't feel particularly adrenal. My energy is pretty even which is the only nice thing I have to say about my body right now.

So I would guess that when I was running 100/60, feeling woozy and dropping weight and feeling adrenal, that there really was something funky going on.

The physiology has shifted again and not in my favor.

It irks me to no end that I show up, I put forth the effort, I exercise, I watch what I eat, I take the medications I'm given and nothing changes. Hell, I took how many years of pre med classes for what? Chronic health impotence. Where's the Viagra for that?

When can I write #winning when it comes to my body? When does the application of intelligent effort actually get me somewhere health-wise??????

ACTH Results

I finally got the ACTH challenge results.

-Baseline: 13.6

-30 minute:26

-1 hour: 28.7

Pretty good. I'm pleased, although will re-read all my info to be sure I'm not missing anything. What a difference from the last one, which started at 13 and never got past 20!

I asked why I was feeling adrenal in and out and if I should be taking steroids in those moments. The endo said there was no way to know if my system was wobbling or not, but that taking 5mg every few weeks wasn't going to hurt me.

I really think the exercise is a problem. I have cut back. I'm alternating days, making sure I give myself a longer recovery time. I take naps if I need them too.

But this is an active time of year. We swim. We walk. We bike. We play tennis and badminton. Active things just happen.

It's hard to just sit on the sidelines, but I'm trying.

My hope is that, with time, the balance will shift. I'll feel less and less adrenal and do more and more.

Updates of Varying Importance

Still don't know my test results.

Didn't take more steroids, but I feel the lack. Since I haven't exercised since Sunday, it's not so bad. Fatigue and muscle spasms is all.

However, I plan on exercising today. Just 20-ish minutes of squats with this dvd. (I did find a new Zumba class to try, but not until August.)

I have lost 2 more pounds and seem to be dropping 1/2 lb a day. In total I've lost about 10 lbs in the last 20 or so days, but I think most of that was water weight from the steroids.

I'm only counting weight loss from my last known weight unaffected by steroids. If that makes any sense. So I mark it as 4lbs lost.

The publisher passed on my novella. That's pretty much how it goes: Manuscript always requested, but never published. However, I am excited about self publishing and have been focusing on...

-establishing a twitter presence
-setting up a blog
-getting book covers together
-hiring an editor
-networking with readers and authors

Yesterday I did a lot and today I'm at loose ends. I want to finish the next novella but haven't been able to focus. I think that's the fatigue. I'm just not able to center when I'm tired and writing, even writing badly, is not a passive art.

Following the Clues

First clue, the pill pack ended last week and the adrenals have never liked major hormonal changes. This time they were copacetic for a few days until deciding that oh, yeah, I really did need to hit the wall at 60mph.

Bam. I was down for the count.

Second clue, headache that would not go away. Couldn't touch it, not even alternating Tylenol and Advil (in large quantities). Sleep only provided marginal relief.

Third clue, eye burning fatigue, but no heavy limbed-ness. Quickly dismissed as Doing Too Much and Being Too Busy.

Fourth clue, when the toddler touched my leg, I just about screamed from the pain. Fatigued muscles that would not recover, even with rest. Sad zombie shuffle was the default gait. Only the adrenals make me hurt/walk like that.

Fifth clue, the small muscles of my feet began to painfully spasm. This is a classic sign of adrenal weirdness for me.

Sixth clue, blood pressure was being weird. Not the huge zig zags I've have before, but I had some 20 point drops that made me symptomatic and went lower than feels good for me.

Final clue, my life was getting smaller, not bigger. Napping for the better part of the afternoon while the toddler watched cartoon after cartoon. Just letting everything slide, except exercise, which I dragged myself through by sheer force of will.

Based on this, I took 5mg to see what would happen. Wow, what a difference. I felt awake and alert. My legs stopped aching. Still struggled a bit with exercise, but it was 95F out, which doesn't help. However, the exercise didn't tank me for the day like it had been.

Now I don't know if I should take more tomorrow or stop or what? I would bet money that the ACTH challenge was normal. So I should not even need steroids. Right? I should be free. Right?

5mg isn't even a physiologic replacement dose for Hydrocortisone. I can't be doing that badly if that's all it takes to turn me around, right?

So why can't I live my life without the steroids?

Is it the exercise? Should I stop? I'm not doing much because of the knee problem. Mostly walking, but it's been very hot. I slowly walked 2 miles today and played 30 minutes of light tennis (i.e. we can't really hit the ball well enough to get a real game going, so spend most of our time picking up the balls). Is this really too much?????????

Holding My Breath

Waiting on test results.

Waiting to lose more than two pounds.

Waiting for my knee to implode.

Waiting to see if this wacky ice therapy thing I'm trying helps me lose weight (so far, no).

Waiting for the weather to improve so the toddler can go swimming.

Waiting, waiting, waiting.