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.

Saturday, December 13, 2014

Two Steps Back

Adding in more steroids. Crazy. Yesterday felt more like the tail end of things than the start of the next big step down. I thought I would be pretty much back to normal after a good night's sleep. Might not even need the full five day burst.

Ha.

So I'm now up to the full dose 40mg of steroids. Taking every inhaler I own. Round the clock nebulizer treatments. I've used up all the tools in my tool box.

I got nothing else.

Hope my body figures this out.

Friday, December 12, 2014

Super Sick, Super Fast

Well, this has been a whirlwind. The second this bug hit me, it went straight for my lungs. By 12 hours, the asthma was serioulsy flared, but my awareness lagged behind a bit. It wasn't until I had to park a billion miles away from an entrance and walk in that I realized I wasn't doing so well. Breathing and walking weren't compatible.

By 24 hours I was beginning to realize I was in trouble. It was either take steroids or go to the ER. And what ER wants  to see me if I hadn't even started steroids? So I took the steroids and every thing else I could find in my medicine cabinet. Lots of pulmicort and 20 mg of steroids later, it's not as acute. Still bad, but I don't see the ER in my future. I hope.

Yes 20 mg is a pretty low dose, but I can always take more. Steroids work pretty fast. I figured if I didn't see any relief in a few hours, I would take another 20mg, but thankfully, the lower dose is effective.

The new nebulizer should be here soon. I got that moving pretty quick.

I thought I would be devoting my day to scoring some Tamiflu as I think I may actually have the flu, but the fever broke early this morning and my main issue now seems to be asthma. It's probably too late for Tamiflu.

The bug that hit me like a nuclear bomb in 2010 was fast like this one. Very aggressive. Typically there's a lag between the time the bug manifests and when the asthma activates. This time, I got the one-two punch.

I don't think this will end up being as bad as 2010. I started all the steroids and asthma meds pretty quickly. In 2010 I played a lot of phone tag trying to get medicine. I wasn't stocked up like I am now.

Still, this is a serious flare. I'm completely wiped and there's enough fluid in my ears that I'm concerned about an infection starting up for next week.

I'm hoping to write today, but I've been up all night and am not even at 50%. I don't want to lose momentum on my book either. It's going very well and it's a story readers will like. So I'm hoping writing this will warm me up enough to take a stab at some fiction.

And tonight we have theater tickets for the Nutcracker. Somehow I will go out to dinner with my little family and sit through the theater performance. I seem to have lost some of my coping skills, though as I am not confident I'm really up for this. I used to suck it up a lot better. This time around, honestly, I just want to stay home and sleep. Or go to the theater in pajamas.

Thursday, December 11, 2014

Lack of Oxygen

This is my karma.

I ship my nebulizer to the other side of the country in an effort to keep my parent out of the hospital and promptly become sick.

I have a pulmo appointment soon and will request a new neb then. My unit is pretty old anyway. I guess in the interim I will make do with spacer delivered albuterol and pulmicort added to the Symbicort already in use.

To boot, I was just getting into a good groove going on the exercise, too. I cannot win. Like ever.

I also took a stab at making an appt with the pancreas specialists the GI doc recommended. This is in the system where I repeatedly have been unable to make an appt. This latest attempt was no different. Heavy call volume, please press 2 and we'll call you back....except option 2 malfunctioned.

Naturally.

I feel like my medical care is an SNL skit.

Also, I'm not breathing so well, so the stringing words together thing may be kind of loopy.

Oh and my parent is doing well. Bouncing back very fast, so fast, you would think they were 40 and I was 65. Gah. I'm glad they are recovering well, but it is depressing to see how much more resilient they are than I am. I don't bounce back and being younger seems to offer no advantage in my body.

Writing Update

I'm not sure I'll be a paid writer for much longer. The industry has continued to devolve in apocalyptic ways. My earnings are now back to what they were when I first published, back when no one knew my name and I had no idea how to market a book. If I can fall that low when I have fans, a strong marketing skill set and several popular books...well, it does not bode well.

The truth is, you can hit bestseller lists and have a fan base and still see everything you built disappear. There are no guarantees in this business.

I haven't decided what I'm going to do. A lot will depend on what actually happens in 2015. I can get by making less money (which the way things are going it will be a lot less) but I also have to make enough to cover expenses.

Most of the problem is Amazon's KU program, which has not been a boon to authors (or readers). It's complex, but basically Amazon favors KU books over all other books, so if you're not exclusive to Amazon (which KU requires) you're kind of SOL. And they cut royalties by about 30% (more in some cases, depending on the book price). So where I used to earn $2.10 per sale, with KU, it's $1.33 and declining.

If writers go with short stories or serial stories, they can make KU work for them at a 99 cent price point, but while I do  tend to write short, I'm not interested in being locked into 99 cents or in only writing short stories. There's a point at which writing becomes sweatshop labor, where I will work harder and harder for less and less. That's why I stopped pursing traditional publishing. I value my quality of life. If I'm going to work like a dog, the pay has to reflect that. Otherwise, I'll find something else to do.

Scammers are all over KU. I just saw a book titled 'All About A' that's in KU. If you look inside, all you see is AAAAAAAAaaaaaaaaaaaaaaaaaaaa. The whole book. That's it. And Amazon allows that to be sold and take up space on their site to compete with legitimate authors.

Meanwhile, none of the other platforms can compete with Amazon on sales volume (although with KU mucking things up royally, that may change shortly).

Further, there's a ton of saturation. Too many books. Too many writers when the number of readers has stayed the same.

And my genre may be weakening. That's my gut feeling. I could be wrong (I hope I am) but my sense is my genre isn't selling like it used to.

I would like to continue. I have more stories I want to tell, but writing may have to go back to being a hobby. I don't know.  Plus I have no idea what kind of job I want anymore.

Kiddo Update

She's really good at math. I think I've mentioned that, but I'm still stunned. Like really good at math. Like working out multiplication on her own. Wow.

And she's discovered legos. So I'm thinking she's going to be a math person. We'll see. I'm still crossing my fingers that she will find her love of reading, too.

I read over some things I wrote when she was a baby and the gifted stuff was so obvious even at such a young age. I was aware that she was ahead back then, but I didn't understand it. I still don't, but I'm learning.

She had the bug I have, but in her it was an hour long sore throat. For me, it's asthma central. Funny how that works.