Friday, July 10, 2015

Since You Asked

This is how my writing is going...

The same day my stomach blew up...

I had a call with Ama zon's HQ, which was/is kind of a big deal. 

It was for a special project I'd been invited to participate in.

I white knuckled my way through the call, because you can't not take a call from Ama zon when you're an indie. These calls can make you.

But I don't know if I'll be able to make their deadline now.

To avail myself of the opportunity with Ama zon, it was essential to have a very productive week the week I got sick. I needed to make word count, not be stuck in the ER and down for the count with pain.

I'm very behind now. I was distracted by the diverticulitis. The pain was so bad, I tried to just sleep through it as much as I could. Focusing on anything else seemed impossible.

Other than my body fucking up my writing career, everything is going okay. I have a fan base and avoided Kindle Unlimited, which has insulated me somewhat from the worst of the latest changes in the industry. (A lot of folks just saw their income evaporate overnight because the put all their eggs in KU.) My last book performed well--not a break out hit but a solid seller with good conversion to my backlist (i.e. they bought the other books in the series). This year won't be as rich as last year, but I'm still a profitable writer.

I'm surviving.

And I think I'm done posting for a while...unless something else happens that I feel the need to write about.
 . 

Thursday, July 9, 2015

This Much Fun Is Illegal

1. I ate plain scrambled eggs today! That has been the highlight of my week so far. So it goes first.

2. I wonder if I subconsciously knew something was up when I wrote that Update post. I could have posted any time...why right before I get sick? Interesting. I did have some weird stuff going on, but I thought it had resolved and I couldn't tell ya if it was related to what happened later or not. No clue.

3. The antibiotics are kicking in so the pain is not as bad. I might be pain free by tomorrow. Just in time to go out of town and squeeze my bloated belly into a formal evening gown while making nice with relatives I can't stand. That should be interesting. 

4. I seem to have a cold now. And a canker sore. I would say it's stress BUT the ER was filthy. I mean, truly filthy. Everyone was professional, but I kind of don't want to ever go back due to the filth. 
 
I've never seen anything like it.

There were used gloves on the floor in my room and in one of the bathrooms. The toilets had old smears of urine/fecal matter/blood all over them. I actually had to clean a toilet before I could use it. 

When I was in the waiting room, even with as much as my stomach/groin/legs hurt, I had strong urges to clean things up. There was litter everywhere. Empty bags of chips (yes, plural) all over the place. As I waited, someone dumped a whole bottle of formula on the floor and left it there (perhaps, like me, they knew there were no towels in the restroom).

So I imagine I've picked up something from that environment. It seemed like a place where a cold or flu (or ebola!) could fester. And I can believe the toilet seats could give someone herpes...or chlamydia or gonorrhea. Ha. Maybe that's where all the STDs are coming from.

Wednesday, July 8, 2015

My New Weight Loss Diet

It's not a good one.

Spent all day in the ER.

I was thinking possible appendicitis.

Fever + 48 hours of non stomach flu abdominal pain + elevated white blood cells.

They were thinking chlamydia or gonorrehea.

I told them, "I'm fat, forty-two and too tired for that much excitement."

They remained skeptical.

And since I have a vagina and abdominal pain, they had to be sure I wasn't secretly a whore.

I'm not.

I think they were surprised.

Anyway, the CT scan came back with diverticulitis.

The pain is excruciating.

(This is how I know my pancreatitis was/is mild.)

I regret turning down the pain meds.  Advil doesn't touch this. Not even close.

I have to keep reminding myself, I don't do well on narcotics and they don't really help either.

But I am still wistful.

And not eating.

All this GI stuff runs in one side of my family. I used to have great digestion but it looks like the DNA is catching up to me.

PS: Everyone was kind and compassionate while also asking me over and over about STDs (as if I would know that without a test anyways). This was the only question that was repeated. They (seriously, more than one) had this look in their eyes like 'oh yeah, you're gonna have it' which got to be kind of weird. WTH?

PPS: Hemoglobin is going down based on the ER bloodwork. I'll likely be anemic with the next menstrual cycle.  Damn it.

Friday, June 26, 2015

Update

I don't have breast cancer, which I believe was the big question I left hanging back when I last posted. I have felt guilty about not updating that, but at the same time, I'm not convinced that anyone reads this blog so... Sorry if I left you hanging. I didn't think you were real.
 
(Also, I'm having lots of computer issues and I can't remember my password to log into this site from the new laptop. Ha. So I have to have the patience to deal with the finicky computer that remembers how to get on here.)

As for the rest of my health, I'm going to attempt to update by theme...

Asthma

It's been an interesting year. I had both flu strains. Strain B shut down the kiddo's school for a week. We all got it and it wasn't as bad as strain A, but it was persistent. It took me 6 weeks to get the asthma under control. Kiddo and I ended up with sinus infections to boot. The whole thing sucked and took about 8 weeks total to clear up.

Overall, control has been poor and I have ended up on a lot of steroids. Fortunately the HPA axis did not suppress, so I have that going for me.

Gallbladder/Sphincter of Oddi Dysfunction

I have no clue what is going on. Near the one year anniversary of the gallbladder surgery, I had a week where everything was perfect and I thought I was healed and then...it all started back up again.  More recently, I had a touch of pancreatitis for a few days (that was exacerbated by a particularly bumpy bike ride). So this is going to be an ongoing challenge, I think. 

I find if I take the muscle relaxants at night for several days that it can get mild flares under control (and I only start feeling stoned on day 3 so I can still drive...for a while anyway).

And the food sensitivities don't help, either. (Yes. I still have those. I know. I'm special. Believe me, I would prefer to be normal.) I also don't digest food so well, and weird food sensitivities aside, lots of things upset my system.

Energy (Adrenals etc...)

A.m. cortisol levels were at 17 the last time they were tested, so thumbs up on that. I do have fatigue and weakness, though. For the last year plus, when the birth control pill pack ends, my energy falls off a cliff. (This happened during the HPA Axis suppression as well and then cleared up as I recovered only to come back with a vengeance.) I've mentioned it to the OB/GYN who just shrugged and told me I could skip my periods and that was it. Since they didn't give me enough pill packs to really do that, I can't opt out as much as I would like to. If it's a vacation or a special event, I'll do it, but otherwise, I suck it up.

This fatigue is pretty much as bad as adrenal insufficiency fatigue, except it's not my adrenals. I found one other person with PCOS who experienced the same energy drop off, so maybe it ties into the PCOS somehow. It is debilitating. I don't cook for my family. I don't write. I nap a lot, which is unheard of for me. My brain hurts (literally under my skull) when I have to think. It's awful and I'm not sure there's anything that can be done about it, which is frustrating. I'm losing ten days a month to this bullshit. 

Some blood work came back recently showing some potential issues that might be confounding things. My thyroid is (possibly)  starting to go. Not abnormal yet, but it made a significant jump in that direction. The graph looks like a hockey stick. I will be requesting more blood work on that and we'll see what shakes out.

And I have no idea how I'm not anemic. Somehow I have normal iron levels, but the other levels that feed iron levels are off-the-charts low. Like, there's almost no ferritin.  RBCs are hanging on a wing and a prayer. All the other iron markers are wonky.  I am always on the cusp of anemia, so I'm not totally shocked, but these lab results are way worse than usual. 
 
I'm supposed to be taking iron supplements but my gallbladder-less system can't tolerate them. Like, at all. And the PCP seems to not give a shit so...I guess I'm going to have to become anemic or find a new PCP before that happens who will be a little more proactive.

Exercise

I'm biking again and it was way easier than last year...until I got the B strain of the flu. That strain hit my muscles and my legs have really hurt as I return to exercise. Way beyond what would be normal for reconditioning after an illness. I'm talking a month later, it still hurts like a razor is shredding the muscle fibers in my legs. It finally seems to be resolving, though. I think. At least the last ride went well.
 
My time per mile still sucks and I wonder how much of that might be the low iron and changes in the thyroid. I just can't go. I keep trying and nothing improves. Imagine every workout feeling like the first time...that's where I'm stuck.
 
I've started physical therapy for my knee. Doc says there's not much hope of improvement, that the problem is likely chronic at this point. It sounds like my options are baby it forever or trash it further to the point where they are forced to try surgery.

One step forward...a hundred backwards. That's my exercise theme.

Friday, January 23, 2015

Raining Bullets


1. Here are the dietary constraints my body visits upon me, please tell me what to eat for dinner.

-No fat. Biliary ducts and pancreas can't handle it.

-No sugar/carbs. Prediabetic.

-No salt. My blood pressure is very salt sensitive and I'm finding it impossible to avoid. Worse, I crave the stuff.

-No wheat. The asthma is wheat sensitive.

-Easy on the nightshades. I can handle some, but too much will cause problems with the biliary ducts and produce reactions like a raw and red eczema patch on my neck along with joint inflammation. Potatoes are okay though, except for that no carbs thing.

So yeah, you try cooking for a family with all those limitations. It's not easy. I'm down to yogurt and a Good Greens bar for breakfast and lunch in the hopes that I can then handle a heavier dinner. Actual results vary.

Invite me to your house for dinner and we'll have a super awkward conversation about all the things I can't eat. That's really fun and not at all weird.

Also, I've begun to fear tomatoes. They can do mean things to me, but I never know when it's coming.
 
2.My mammogram didn't come back clean. So I'm going in for more imaging. I'm pissed. How many things are going to go wrong? They see something, but they aren't sure if it's anything so...come back.

How long I waited for the mammogram appointment? 6 weeks.

The follow-up appointment? 48 hours.

In this case, speed does not exactly inspire confidence.

3. We are more seriously discussing adoption as a way to grow our family. I'm too old and my body is too weird for me to be pregnant again (much as I loved it).  I have tried to be satisfied with one child, but whenever we go out to eat and we sit in a booth, that one empty space  reminds me it needs to be filled.

(I'm sure that sounds silly, but for me it's a bittersweet moment.)

My family isn't done.

I don't know if adoption will work out. I'm not sure my house will pass a home study in terms of bedroom space and the mammogram thing needs to be dealt with (obv.). Also, I'd like the kiddo to be a little bit older. Maybe 8 or 9 just so she's a bit more developed and hopefully able to better handle the split in parental attention.

We would adopt here in the US, in case anyone was wondering. Don't know what age yet. Younger than the kiddo though.

4. Fucking eczema. That about sums it up. Skin stuff is a bitch. Damn. I went to the grocery store last week, and looking at the receipt, I realized 15% of my grocery money went for lotion. Sheesh. Between that and the prescriptions and the custom made lotions, I'm into it for at least $300 at this point. And nothing really works--even with using OTC steroid cream once every 3-4 days.

Aquaphor at least keeps the pool water from aggravating the kiddo's eczema. So swim team is happening if nothing else. If we can keep her skin from cracking and bleeding, she'll have a successful swim season (meaning she trained consistently, we're not doing meets yet, if ever).

I'm counting down to Spring because that's when the eczema will finally retreat. I cannot wait.

Next year, we'll start OTC steroid cream once a week in September. Maybe if we do that we can head it off.

5. Random life stuff.

Kiddo is into Egypt and we've been geeking out as a family about Cleopatra, mummies and pyramids. To my delight, my kiddo will sit and watch documentaries with rapt attention. She's reading her way through a pile of books on the subject and has memorized most of the hieroglyphs, which we didn't know until we took her to a museum program and she started translating them into letter equivalents.

My husband has fashioned a playhouse pyramid out of cardboard for her. She's been very busy decorating it with her Egyptian stencil kit, while I hover in the background, wiping proud tears from my eyes.  I love seeing her engrossed in something like this, and it is a joy to find ways for her to learn/experience more on a hot topic.

At school, we are dealing with social aggression and it's not been fun. Bullies suck and school response has sucked even more. It's been tough for all of us to navigate the issues that have come up. I hear it just gets harder which is....rather deflating.

(Side note: Is there a genetic component to bullying? We have three generations in a row that bullies have targeted. I know bullying is common, but it's interesting to me that there seems to be a familial thread. My husband and his siblings weren't bullied, but we were in my family. What makes the difference? Or is it that social skill deficits/whatever it is that triggers targeting are transferred from one generation to the next via (faulty) modeling and they can't pass down what they don't know?)

(Side note 2: To the mom who incessantly tells me no one ever bullies in her kid's school because the school is so awesome and they won't tolerate it....IF your kid has never complained of being picked on, here's a NEWSFLASH: You have to consider that YOUR child is the bully or the bystander who does nothing.  Social aggression is a universal experience. If any school had the magic formula to abolish aggressive behavior, it would be world fucking news.Please shut up. You're being a jerk.)

Writing-wise....I am bad at math. So bad you probably shouldn't trust my 15% mentioned above. So, basically, I grossed more money than ever last year from writing, far surpassing my previous Fortune 500 gig.

But.

It never once felt like I had that kind of cash flow coming in, to the point, where I thought I'd made less money.

Clearly I need to improve my accounting, which I'm putting some things in place to do that. However, even with improved tallying, I can't figure out how to harness my cash flow and allocate it properly to maximize it. I never know what I'm making from month to month.

It used to be, I knew at least the next 60 days of income. Now, I have a publisher for some of my stuff and those statements and checks are quarterly. I never know what they will be. Worse, at the moment, they're the biggest chunk of income.



And my income is objectively in the toilet at the moment, but that doesn't mean the whole year will be like that.

So...how not to suck at small business money? I don't know.

The actual writing is slow as always. The flu fubared my writing flow and I'm struggling (STILL!) to get into a groove. What do you think I'm doing here? Procrastinating. That's what.

I'm going to sign up for some art classes as I'd like to expand into other creative outlets for business and personal reasons. Business-wise, I want to learn how to illustrate children's books as well as improve my Photoshop skills. That being said, my hands are finicky arthritic things so I'm not sure if using them even more is such a fantastic idea or how great my fine motor control will even be, but I'm going to dip my toe in and see what shakes out.

Tuesday, December 23, 2014

Done (Also Crisco for Eczema)

We survived the flu. My lungs are still gunky though, but the asthma went back to wherever it goes when it's not torturing me. (Hell?)

No issues stopping steroids (unless you count the fact that I wasn't super confident that my lungs were ready to breathe without them--fortunately they did okay). I ended up cutting the Pulmicort short because I realized if I kept taking it, my system would come to depend on it and I would have to taper and that would suck. I probably still needed it, but I took a risk and it was fine.

The kiddo faired pretty well. She was tight the first day but that was it. We were very aggressive with inhalers and nebulizer treatments though due to her classmate who passed away from asthma complications. Ostensibly they had the same bug.

The big thing was her fever literally cooked her hands. She has eczema that shows up every fall and stays through the winter. The fever made it so much worse, leaving her hands beet red and rough as cracked pavement. We had to take her to the doctor and beg for help.

(As predicted, our ped who was so amazing retired and now we're stuck with this young somewhat inexperienced ped who likes to cover their ignorance by dismissing everything I say about my daughter's health. So the visit was not a simple matter. I had to really push and advocate for them to do anything for my kid. It was like they wanted her hands to crack and bleed. And yes we need a new ped, but you know, we all had the damn flu for ten days so cut me some slack. Also swim team starts soon and I can't put her in a pool when the eczema is bad.)

After a lot of hemming and hawing the ped finally suggested we try Crisco with gloves at night. Okay. Weird, but we were game for anything at that point.

There isn't a ton of information online about Crisco for eczema so I thought I would share our experience as I know how frustrating it can be to battle with eczema.

The ped swore Crisco would work overnight. They use this remedy themselves in addition to prescription creams that my kid's hands were too inflamed to tolerate.

So we bought the Crico and some gloves, lubed up her hands and hoped the ped was right.

The next day my daughter's hands were only slightly improved. Maybe 5%. Crisco is no overnight cure for eczema.

Since her hands were still too bad for the prescription cream, we continued with Crisco at night and used Aquaphor during the day. Over the span of a week, we finally saw some improvement.

So yes, Crisco does help eczema, but don't expect a miracle. It's only part of the solution in our experience.

My daughter is now using Atopiclair during the day, Crisco at night and Aquaphor at random intervals. There's lotion in every room of the house, my purse, all the cars, her coat, my coat etc... We are also giving her Flax Seed Oil (Dr. Sears' website says this is helpful, we're not so sure but we've got 32 oz of the stuff to work through). On top of all that, I've stashed away some OTC cortisone cream. I hate to use it, but I have found that if I apply it before things get bad I can head off the worst of the eczema.

At least her skin is relatively normal now. Enough so that I'm willing to let her attend swim practice. (I'll be applying Aquaphor liberally before she dives in and hoping for the best.) While the eczema has improved, it's a tenuous situation that can backslide at any moment.

Keeping eczema at bay is easier said than done. A lot of that has to do with the fact that seven-year-olds sort of suck at follow through. I can send her to school with lotion but I can't make her use it.

I'm taking full advantage of the holiday break to remind her to put on lotion approximately every hour. There's also been a serious conversation about her responsibility to take care of her body that I'm pretty sure went in one ear and out the other.

I wonder how much Crisco we'll go through this winter?


Tuesday, December 16, 2014

On the Couch

I've been sleeping on the couch for five days. I don't recommend it. Except it does allow me to mostly sit up and not bother my husband with all the hacking and nebulizing that goes on all night long.

Kiddo is sick now too. Which is alarming as one of her classmates just passed away due to asthma complications. So very sad. I've been very vigilant about her inhalers and so far, so good. It's not hitting her as hard as it has me (which probably has more to do with luck than any meds I've given her. Asthma that plays for keeps doesn't really care what you throw at it in my experience).

I didn't think she was going to get it at all. For a week, she was like "I don't feel good" followed by "Oh I'm fine" and then boom, the hammer fell.

We're hanging in there. I'm going to try not taking prednisone tomorrow and see how that goes. Yesterday, I wasn't so sure, but since then the coughing has become much looser and more productive, breaking gunk up instead of winding it tighter. Nights are still pretty bad with lots of asthma regression, but days show signs of hope.

I just wish I felt better. The malaise with this bug is as bad as adrenal insufficiency. My kiddo is a lump and I'm not much better.