Limited Engagement: The Rash

Here's a picture of the rash. It is actually red not brown, the camera warped the colors a bit. You can see the blood welling up underneath the skin on the right. Yep just that one bright little pin prick kind of in the middle there. It looks a bit like a mole, but in real life it is stop sign red. I'm sure it won't be alone for long.

Oh and why did I eat wheat? Two reasons: I'd gone more than a month without any bread or obvious wheat sources much to my husband's aggravation. He missed having bread in the house. He wanted me to bake Christmas cookies and kept telling me I was nuts. He thought I was being silly.

I may be nuts, but probably not about this.

Second, I had a doctor's appointment with the gastroenterologist that I forgot to cancel, and by the time I realized I should've cancelled, it was Xmas already with the appointment the next day. So I  thought 'what the hell I'll trigger the rash to show them so we have something to do'. As it turned out, the appointment was cancelled by the doctor and I'd done this to myself for no good reason.

I don't think I have Celiac's. I'm not malnourished. I don't have GI issues now that the adrenal stuff is more stable.

I am wondering though if it's not gluten intolerance and more of an allergy. The rash was a little delayed in appearance after eating bread and cookies on Christmas Day, but the itching (OMG the itching) was immediate.

So I guess I need to sort that out because an allergy might be a bigger problem than gluten intolerance.

Here's a shot that shows the spread of the rash, the camera only picked up the most affected areas, in reality my entire neck and upper chest is some degree of pink/red. Some areas have those raised blister thingys I mentioned.

My husband doesn't think I'm being silly anymore.

The Season of Wonder

The one good thing about becoming an old hag is that I can look back and see all the events and themes that have come full circle in my life. You don't see this when you're twenty or even thirty, you're too close, but around the forty year mark, it's obvious that our lives are concentric circles that only feel like random zig-zags.

I was crushed when my daughter ended up having some developmental delays requiring expensive treatments.

I was frustrated when the economy tanked taking my home's value with it, and trapping us in a less-than-ideal school district.


When doors close, windows do really open. Sometimes, anyway.

I found out today that my daughter should qualify for a grant that will allow her to attend amazing private schools in our area. I'm talking ten kids in kindy with two teachers kind of amazing. They offer a fully funded curriculum with art, music and PE, none of this cutting programs bullshit that goes on in our school district.

This didn't just happen. I had to pay attention. I had to be on the ball. I had to seek out resources above and beyond what most families in our situation access. It pays to over-function. Sometimes, anyway. Plus now I'm networked with families of kids like mine and have been able to pass on my learning curve. Serendipitously, it was one of their learning curves that helped me with this latest breakthrough.

If you live long enough and open your eyes wide, you'll see that serendipity is always spinning through your life, but its time line is much longer than our attention spans and we only ever spot it in hindsight.

Being sick for so long has had its upside too. I can't really blog about it though, it's not for public consumption. Plus, I would still have preferred to be healthy, but at least being sick wasn't a total waste. It ended up serving a higher purpose that I didn't see coming at the time.

How the Hell Do You Spell Minutiae?

My grandmother grew up in Kansas during the Dust Bowl. Not only did her family survive, they thrived thanks to my great-grandfather who kept the family financially solvent by 'wild catting' and striking oil. Still, no amount of cash could blow back the dust, so her early years were spent trying not to be swallowed whole by the desert prairie. Then WWII hit and one desperate situation replaced another.

Despite a life steeped in history, she only ever wrote the most inane letters to me, as if she didn't want to forget one detail of the better days.  As if she knew the practicalities of life are the building blocks of its wonder.


In her letters to me, she would note the temperature and record the weather. There would be a list of what she ate. Once she told me she rearranged the rocks in her garden and then went on to sort her socks.

I kept her letters because I found the banal narrative hysterically funny.

And then I look at what I do here; record every detail as if the minutiae of my life is at all important.

It must be the Kansan in me.

Some of us talk about the cool stuff and some of us are fixated on how the process of sorting our socks went.

I'm a sock sorter type. (I don't actually sort my socks. I don't believe in that level of organization. I would rather tell you about how I don't sort my socks.)

Here's the latest minutiae.

We survived the flu. The newborn had already been exposed and we were able to enjoy a family Christmas. (I am an awesome aunt by the way.)

My kiddo is still boogerific with no apparent end in sight.

The asthma gave me a hard time, but responded well to everything I threw at it. For once. I'm now tapering down to my base line meds.

I ate wheat again to see what would happen. I paired it with Alpha Lipoic Acid which has meant no joint pain or carb hangover. I do have a resurgence of the itchy rash at my neck. This first appeared about a year ago and was about the size of a quarter. It then grew to cover my entire neck and extend down into my upper chest.

Avoiding wheat helped it quite a bit, although it would still flare here and there, I assume due to wheat cross-contamination. (Going totally wheat free is incredibly difficult. It's easy to avoid bread, harder to skip the additives and hidden gluten.)

The dermatologist diagnosed the rash at the quarter size stage as eczema, but I'm not so sure about that. I think it's a wheat rash  (which is possibly still technically eczema). It sometimes seems to blister up and then I get bright red pin pricks of blood all over.

So wheat is out, for real.

Breaking

I've got some carrots and potatoes bubbling away on the stove, the first step in making a kielbasa kraut soup. So while they boil, I will share our breaking news: We are all sick.

Hubby with the flu.

The kiddo with that respiratory bug she's been battling for a month.

And me with an as yet undetermined problem. It could be that the metric ton of snow we got is messing with me, or maybe I have the kiddo's cough-forever bug, or perhaps it's whatever flu people who've had the flu shot get. I don't know. I don't have the hubby's flu, but I got something.

My lungs are not good and I'm adrenal tired (which is fatigue + weakness for those who don't know my made-up lingo).

I've upped the asthma meds, trying to head off any ER festivities. I have hope it won't come to that. I can take being sick over Christmas, but being sick in the ER over Christmas? Is too painful to contemplate.

We are trying to take it all in stride. Lots of Netflix going on and any gift that arrived in the mail today, we opened. One because the jar of pickles shattered in transit and needed to not steep my house in sour pickle juice thank-you-very-much. Another because it kept the kiddo busy and happy.

As much as I worried about being too paranoid, thank goodness I am all hyper about germs. Because Christmas is ready, waiting to be unwrapped whether I'm sick or not.

My only other concern is I became an aunt (for the first time, huzzah!) almost a month ago and the baby will be at the extended family Christmas. So long as I don't go downhill, we should be feeling okay to go unwrap presents and have a family meal, but I worry about being contagious around the baby. Any ideas on how contagious we'll actually be? I won't hold the baby or hug or touch anyone, but the kiddo isn't so easy to contain, she'll be germ vector one. So do we not go?

I Called It

Hubby's down.

Fever of 101F.

"I'm achy," he says.

"It's the flu," I say.

"No, no it's not." His lips tighten and he glares at me.

Diagnosis? Denial.

But thermometers don't lie.

So we'll see whether I succumb or not.

The Coming Storm

So the last post I wrote about asthma past, present, future never did get around to what I really wanted to say which was this:

It is clear that, while things have improved, I still struggle. I need to plan for a future where I'm not as capable as I am today. I am not reliable.

The asthma is going to continue to be a problem and my lung capacity will continue to erode. Right now, my oxygen level only flirts with the cutoff for intubation, It has become more and more apparent to me that this asthma gig is a progressive one. I really don't see the asthma going backwards, only forward. I hope I'm wrong, but if you think aging is a bitch on your skin, you should see what it does to fussy lungs. Not a good scene.

So the writing is a good way  for me to produce income, but it requires high output and a fully functioning brain on a consistent basis. One bad asthma episode and my income will be wiped out. Should I find another job with an outside employer, I would not be able to meet performance expectations. Between the fatigue and cognitive issues from steroids and subsequent low cortisol levels, it would be easy for me to be unemployable for a year or more.

For the record, I think half the reason I'm such a slow writer still is because I still have word recall issues. The phrase or word will be on the tip of my tongue, but I can't get it out. I spend a lot of time editing to get my prose up to snuff. The effects of the last few years are far reaching.

So what am I going to do about all this? I have some ideas. The trick is to leverage what I know about being a successful writer into a business model that doesn't require me to create content on a weekly basis. In 2013 (assuming the world doesn't end today) I will be launching a few micro business initiatives around the indie publishing phenomenon. I will continue to write in the hopes of building a fan base that will wait for my work, which will help me weather any long lulls between stories.

Today the sun is shining and life is good, but I'm preparing for the storm.

Ghosts of Asthma Past

My hospitalization in 2010 was preceded by my daughter being sick for a good three months straight--back-to-back bugs. The last bug savaged my lungs like a cannibal on (ha!) steroids.

So here I am today and my kiddo has been sick since before Halloween. She is on at least bug number two, and, at the moment, is worsening as the gunk climbs up from her lungs to her sinuses. I am concerned for her, but there's nothing to be done beyond worry. No need for antibiotics right now or breathing treatments, just hope that it clears up soon.

On top of that....Thanks to Facebook, I can now say I know more people with the flu than without. How we don't have it yet is  mystery, but I worry that it will be bug number three and history will repeat.

When I was in the ER back in 2010, one of the research docs came down to see me. They wanted my DNA as a "non responder asthmatic" (meaning I took all the meds and the asthma didn't care) and they talked at me for a while (I was a bit of a captive audience). Their words haunt me.

Their spouse has bad asthma and the early school years with their kids were--and I quote--"hell because of the bugs". The spouse stayed home in an effort to stay out of the germ pool.

The look in their eyes as they told me all this was chilling. It was the look of knowledge someone wishes they didn't have, of knowing the hard road ahead and holding back the directions because it would spare no pain. It was pity.

I don't remember a lot of being in the ER and in the hospital during that particular episode, but I will never forget that doctor. They're my own personal ghost of asthma past, present and future.

In Search of a Second Wind

I'm without progesterone and I've had fairly active asthma the last few days.

I'm tired.


We ran some errands and went shopping...I hit the wall big time.

I ate, but it wasn't enough. So add in some low blood sugar. 

I need to work but I'm barely with it enough to write a coherent blog post. I would like to lay down but that's probably not going to happen for a while longer.

Ugh. Dislike mucho. Today is going to be a wash.

My Heritage

Well the kiddo is sick, but it's not the flu. Some ongoing respiratory bug that has moved from a cough up to her sinuses. Hegemonic germs.

I think I've just horribly abused the word hegemonic, but I don't care. I like the way it sounds.

She's not feverish and is in good spirits...the whining is at its usual full bore. She's currently running through the house blowing a New Year's noise maker loud enough to make my ears fold over to protect themselves. So, full steam ahead.

I have the asthma just in time to not enjoy a lovely Spring-like day less than ten days before Christmas. The asthma does not like temperature swings and is generally a cantankerous life companion. I would like a divorce and a restraining order. Someone tell me how to get one.

Anyway... story about my parent of the spine surgery.

They were t-boned yesterday by someone who failed to yield when they were supposed to.

A dramedy of errors, this surgery.

They are okay. Only minor whiplash, but goodness. Really? And I thought I was a real calamity Jane.

At least I know where I get it from.

Oh! And someone asked about the kiddo's diagnosis. Initially I did not share because I had a run-in with another parent who had a conniption fit of some kind. Apparently, that parent kept a weaponized score card and, without understanding the game we were playing, I lost. Therefore I sucked as a mother and other nastiness that I'd sooner like to forget. I wasn't interested in what infertiles call the 'Pain Olympics' so I thought I would just keep my mouth shut here regarding the Name of Things.

Now, I'm withholding information as it is identifying. Not that I would shrivel up and die if one or two trolls looked me up, but I think, for her privacy, I should be circumspect.

Patients Are the Answer

I'm thrilled to report that, so far, I'm paranoid with delusions of flu. Let's hope it stays that way.

Today we drove almost two hours to a family meet-up for the neurological thingamajig the kiddo has. It was edifying, and I am so glad we went.

On the way down, all I could feel was the weight of my other obligations pressing on me. I couldn't remember why I wanted to spend two hours in the car with a screaming child (she hates the highway, it's a sensory thing for her) to meet people I didn't know that we probably had little in common with given that my kid is allegedly on the 'mild' end of her disorder's spectrum. I have so much work to do at home, it seemed like a poor use of my time to go.

Then we arrived and all the shared real life experiences opened my eyes. I learned things I needed to know. I realized that being discharged from OT/PT is not a discharge from the diagnosis. We still have work to do and a road ahead of us to navigate.

I mean, I kind of knew that, but thought we were in an okay place. She's within the realm of normal on pretty much all the motor stuff now.  She won't be crafting pop-up books or Star Wars snowflakes (it's a real thing) any time soon, but she can meet the criteria of 'motor normal'.

And then one mom showed me how some of the recent behavior issues we've been trying to resolve were all hooked into our kid's neurology. That was a big light bulb and will inform our parenting moving forward.

Patients live with the diagnosis. Doctors only see it in an office visit, a very controlled environment. Patients are much more knowledgeable about what the disease really looks like naked and how effective various medical treatments are. When they get together and swap information, they change lives.

It's really amazing when patients are on the cutting edge while mainstream medicine is behind the eight ball. I think we'll see this phenomena more and more thanks to the internet. Eventually patients aren't going to take this shit anymore and will coordinate online in such a manner that they can't be ignored. That will be an interesting day.

It's Coming

The kiddo has the same hollow-eyed look as the neighbor kid. I would bet she's 24-72 hours away from impact as that seemed to be the time delay with the neighbors.

Or not.

Oh how I want to be paranoid! I wish it was paranoia! Team Nuts for the win!

I'm over here all adrenal because I'm off progesterone for the next however many days. So I can't tell if my body is just pissed I'm denying its hormone of choice or if I'm on the flu's hit list too.

Either way, I spent the better part of the after noon in bed for the first time in a long time.

Watching this. 

Dr. Lustig continues to be my science crush. Sigh.

Now I'm going to meander a bit...

Took the kiddo to the ped yesterday. She did her antibiotics, was well for all of two days and then began hacking like Santa after centuries of cigar smoking. Initially, it didn't seem too bad, but we recently progressed to shortness of breath on activity and now she sounds worse than Santa after centuries of cigar smoking.

Surprisingly, she's not up all night coughing.

Ped had nothing to say other than they didn't see anything serious. We're going to treat it like asthma and see if it improves. If not, back we go...or not, I haven't decided.

On our way out of the office, the kiddo says, "Now I'll be like you, mommy." This was in reference to the inhaler she's to take. She was happy about it too, whereas my stomach sank.

I took a deep breath and did my best to explain what mommy has is something I hope she never has to endure. "Be like your Daddy," I told her. "He's never sick."

This confused her. I foresee some work ahead on this issue. Surely as much as she's seen the sick she's also seen how mommy always plans crafts, read books, takes her to school and other events plus works? I'm not exactly a Victorian hysteric (this blog aside).

Anyway...the shooting in Connecticut...my heart breaks. We have a society and political system that would rather be on the sidelines of funerals for five-year-olds than fund the programs or create the legislation that stop the violence before it starts. Once is a mistake. Two, three, four, five, six mass shooting--all just since I've been an adult-- is unacceptable tolerance of a sick, toxic status quo.

It needs to stop.

And all the gun nuts whining 'but you can't take mah guns' need to stfu.

Math

I had an epiphany last night, the format reminiscent of those dreaded story problems in school with the two trains going different speeds. Could you ever figure out when they would intersect? I never did.

But given that the flu is mercilessly taking down parents and children alike from the kiddo's school and we aren't sick yet...

I did the math and came up with 'flu over Christmas' as the answer.

Oh.

OH!

So I power wrapped all the Christmas presents last night and will buy the rest today along with more wrapping paper. I restocked the freezer with chicken soup last week, so that's all set. We have jello and will make a grocery run tonight.

I have some big cooperative marketing stuff going on with other authors...I always end up running the thing for some reason. People are intimidated by spreadsheets I think or maybe they believe it's too much of a time suck when it's not really bad. I need to get it all squared away so it's plug-and-play over the holiday and easy for someone else to step in and take over in the event I'm down for the count.

My husband thinks I'm nuts for being so attentive to this. He points out that we may not get sick and I know that's true. In fact, I hope that being the last family standing is a sign we're immune to this bug.

But working to get ahead of illness has always been a best practice for the asthma, although admittedly I wait until I'm actually sick to start over-functioning. This flu bug is pretty nasty and I don't think the flu shot covers it so...I'm trying to be smart and proactive as opposed to crazy germ nut. Time will tell whether I'm crazy or not.

The way I look at it, even if I'm nuts, all the presents will be wrapped, making for a very relaxing Christmas Eve.

Nothing Like Flashdance

It's been an interesting week.

First I was thrust into a rage of anxiety by my neighbor. I sent their child home as they said they were sick and didn't feel well. They didn't look well either. So I did what any mother would and felt their forehead, which seemed warm. Being a responsible adult, I sent them home.

And the parent in charge booted them right back to my house.

WTF?  Really? What part of that scenario screamed 'send them back'?  When your child is sent home it's not because we want to play boomerang.

As it turned out the parent in charge had the flu. The hug-the-toilet-like-it's-your-bff flu. So cearly, their child couldn't be sick.

For days, I ranted to the hubby about these dipshits. Both because I don't want to get sick and because they are not worthy of being parents half the time. They have beautiful children, but their parenting dims their future and there's nothing I can do to stop it. CPS is already involved and it's not getting any better.

At least I feed the one that comes over to play...they are a darling child. Too bad their parents are going to royally mess them up. I do what I can but the psychosocial paradigm that will doom them to poverty and a future as a dipshit parent themselves is already in place. The launch sequence has started, there's no stopping it now.

I was, however, able to stop being so mad about the complete lack of germ containment a few days later when it became clear the kiddo's entire school has the flu.

So I'm doomed either way. It's not all my neighbor's fault.

Then my body had an adrenal flashback. Dreams of lower back pain that woke me up because of the real back pain and left me exhausted by dawn. Stomach pain. Stomach flu type GI upset (although nothing ever really happened, I was just threatened with it for hours).

I couldn't figure out what the deal was but then I connected the dots...I'm probably fighting whatever bug is going around. Or  not. But many a time the adrenals flare before I'm objectively sick with a bug. I'm crossing everything this is the worst of it and I hope we don't linger for a month before we succumb like we did with that stomach flu a while back. If the puke is going to rain down, let's just get it over with.

Not the Only One Anymore

It's now PCOS plus one in my family. At least they aren't first and can, hopefully, benefit from my experience. The email I sent them today...

Are your LH and FSH ratios inverted? If anyone other than a reproductive endo looked at you and your labs..take it all with a grain of salt. Especially since you are not text book. The REs are the real experts on the hormone levels. There are all sorts of variations. As an example, my testosterone and androgen levels are fine but my LH/FSH are all messed up and I will have a good A1C but a high total insulin (of course the steroids don't help).

The shortcoming of the RE is that they don't care about your heart or diabetes risk, they just want to put a baby in your belly lol. So you might want to search the medical literature for patients like you and track down a nearby PCOS expert to gauge what, if anything, else you need to worry about.

I could not take Clomid...I reacted to it like a recreational drug, totally high with disruptions in vision which made it a no-no for me. So I moved on to injectables and then IVF.  If you do Clomid I would pester them to monitor via transvaginal ulstrasound so they know how many follicles are 'ripe' so you can decide if you want to risk multiples or not. This was/is not the standard of care but it's also how folks end up with too many babies. The best way to control for multiples is IVF two embryo transfer...but it will break your bank. Then again, twins or quads will mess you up financially too. So pick your poison.

I also would not get pregnant without knowing your progesterone levels. You will miscarry if they are low. Progesterone is usually administered via injection in the butt, but it is painful and can leave lumpy scars. I insisted on vaginal suppositories from a compounding pharmacy and the science supports this as being effective for maintaining pregnancy. Most REs know to check for this, if they don't I would be concerned about the clinic's quality of care.

Go to your local Resolve.org support groups...they know which doctors and clinics are good and are up on the latest research.

Let me know if I can help! Try not to stress about it...I've been there, I know it's not easy but don't let it eat you up. You are young and likely on the 'light' end of the PCOS spectrum...I would not imagine that you wouldn't get pregnant. I'm on the fubar'd might as well have Cushing's end (indeed some PCOSers actually have Cushing's).  I am very lucky to have my girl!

One more thing...The only big piece of wisdom I have to impart is time is more expensive than money when dealing with infertility. I spent four years trying to be cheap and now I am too old to pursue a second child in good conscience. My health is much worse now with the asthma and steroid side effects. On top of that, I'm almost 40. If I'd just sucked it up and done IVF that first year, I might've been able to have more kids.

So don't focus on the price tag, focus on efficacy and making sure you have time left to have more kids down the road, if you want them.

Loose End, Tied

That would be an emphatic yes on the tricked out glammed out rocket ship and space suit (although she might decide silver lame is fashion enough).

Total girlie girl. Who is also going to be a nerd.

For the record, she's the one saying she wants "more science stuff." However, I don't think she's thought through the implications on the pink and glitter front. Sadly, they are mutually exclusive. (Anyone else thinking how kick ass it would be to pair a lab coat Barbie with an awesome glam microscope and pre-made slides? No? Just me?)

I'm going slightly crazy this month for Christmas. We have money for once and I am decently healthy for once...it's hard not to overbuy as I have an abundance of the two rarest commodities in my life. Next year I will make more of an effort to restrain myself  (see also: the fiscal cliff will eat our disposable income and go after the money we need for groceries) but I'm not going to deny a Happy Christmas this year. Not after such a long period of suck.

Anyway, I just did a little mini workout and am cooling down by blogging with a side of steaming hot (low carb) chocolate. That's not how you end your workouts? You are missing out!

The kiddo is sick. Again. Good Lawd. She's coughing at night and has gunk in the lungs. I am mildly concerned.

There are only 7 kids in her pre-k class (yes, that is awesome) so I don't get how we're doing back-to-back sick. Hmmm. And I have no idea how I'm staying out of the fray (please don't let it ever end though).

I finally finished a project I was working on before my hospitalization in 2010...the kiddo's 2009 baby book. It just arrived in the mail today. It had lingered untouched in Shutterfly's system for so long I wasn't able to edit anything, so I had to order it with four blank pages in the back. Finished is more a euphemism for 'I opened my wallet and bought something.' If I could've edited I would've though. Does that count?

That last paragraph was really all I wanted to say. I do tend to go off in tangents, don't I?

Okay, gotta run. Time to kick this day's ass. Boo yah!

A Riff

I want to be five again. My daughter heals so fast that it makes me feel my advancing years and slow motion cellular response to injury. Her head bump was much better the next day. I checked on her all through the night and she woke up in full hyperactive puppy mode....running through the house and cutting paper like mad with the result that my house now looks like we hold regular ticker-tape parades.

Thank goodness.

The relief was immense.

We are almost ready for Christmas. I think I'm done shopping for my chickadee. There's some pressure as we're trying to avoid a repeat of last year where the educational presents were legion and she had no idea what anything was.

I will never forget how polite she was about it, opening each gift and staring it as she tried to puzzle out wtf it was. She said thank you very sweetly before chucking it over her shoulder and moving on to the next, her body language tight with hope that the next gift would make sense.

I felt so bad last year. Yes, she had gifts, lots of gifts, but they didn't impart joy or delight, just confusion.

This year, I've tried to remember she is all about the girl bling. The name of the game is balancing our need to shower her with microscopes and books with her raison d'etre, which appears to be pink glitter.

This may possibly involve my husband in the garage on Christmas Eve trying to glam up a microscope.

Okay, we probably won't do that, but let the record show we are fully capable of doing so. We have glitter and paint guns and an assortment of specialty paints. It wouldn't exactly be outside the realm of our weirdness.

So anyway, head injury crisis averted. I have no idea how my parent is doing, but assume we would've heard by now if the dogs had killed them off.

Infertility: The Gift that Keeps on Giving

I did not like my day today. Saw my parent who just had spine surgery and is recovering while navigating a gauntlet of love in the form of two rambunctious dogs.

Upon their arrival home from the hospital, one dog jumped and slammed into their groin, causing them to double over, a huge no-no post surgery. We thought they would have to go back to the hospital, it was so bad.

It would be funny if it wasn't so tragic.

Today's visit was better. Of course, the other dog jumped on my parent's stomach twice. It will be a miracle if their recovery continues uncomplicated.

Then the groin smasher pup nosed into my coat pocket like a thief and stole a sucker. Because these dogs have no training or boundaries, the dog was aggressive when I took the sucker back.

Yeah, well, my dog philosophy can be summed up thusly 'hello, bitch, I'm your alpha.' So you bet I got  that sucker back. Dog meets reality smack down.

By the way, we have the two sweetest, most well behaved labs you'll ever meet. Boundaries aren't just for kids. They work for dogs too! I wish my parents would try it sometime.

And yes, I offered to take the younger most hyperactive dog and also suggested they kennel both dogs for a while. What they do or don't do about it is out of my control.

This was not the low of my day. I wish. It just added to the tension.

Before we left to see my parent, the hubby rough housed with the kiddo and she ended up slamming her forehead into a wall. Hard. OMG. So hard.

Huge goose egg. Immediate bruising. Crying inconsolably.

I checked her pupils, administered ice and gave her some Motrin. She was a little confused about an hour later and still doesn't feel great, but otherwise seems okay. The goose egg is much smaller than it was. I am keeping a very close eye on her and confining her to quiet activity.

I spent the ride down to my parents' house crying in the front seat. I hate crying. Loathe it. But my daughter was hard won after a brutal fight with infertility. Seeing her with a potentially serious injury just gutted me. My stomach was a pit of fear for hours today and it sucked.

Five years after I 'won' my battle with infertility and nine years after I started trying to get pregnant, I am still not free of its grip.

Troll

You should see the spam I got on my last post....someone felt it was germane to share a link to a doctor profile featuring naked patients. I gather the guy is a plastic surgeon.

Why anyone thinks it helps their career to get a back link on my blog escapes me. The SEO of  plastic surgery? Not a concept I am familiar with.

For that reason, comments will continue to require moderation forever and ever, amen.

Also, trolls have been a problem. For a while, folks with IPs associated with various .edu or medical organizations felt the need to tell me I was depressed. At length.

Sigh.

I just...there really is no hope for patients like me. If you want to find a way out of bad health, you have to find it. Medicine's default setting is to throw anti-depressants at you while scornfully rolling their eyes at your temerity to have a different perspective.

Of course, I never had a real life physician tell me I needed anti-depressants, just the pretend ones on the internet. So I either got really lucky or the folks who troll patient blogs aren't such hot shots. I don't know. Probably both are true given that most patients with difficult-to-diagnose conditions usually do end up on anti-depressants at some point.

Then, recently, I stumbled across an online conversation of various medical blog personalities and they were colluding to troll patient blogs. That was scary to read. My stomach sank when I saw it.

So keep your comment moderation on and set fingers to delete. And if you're frustrated or angry...you're not necessarily depressed, you're just a patient at the mercy of merciless medicine. The trolls will make sure you don't forget it either.

Finishing My Thoughts (Sappy Mommy Musings)

Going all mommy blog for a moment...

I completed the kiddo's Kindergarten registration form today. Hold me. OMG. She's growing up way too fast and I never feel like I get time to really savor the moment. My husband and I sometimes ask each other, "Do you remember when she was little?"

Neither of us does. Me, because the sleep deprivation was so intense it scrambled my brain and gave me a heart arrhythmia. Add in the mental impact of high dose steroids, and I'm lucky I remember my name. And my husband has a memory that makes people worry there's some kind of pathology. He can't remember jack. Must be all the radiation from Chernobyl because he slept just fine that first year of parenting.

(Oh yeah, I totally remember him snoring away as I woke up every hour on the hour to nurse--the seething resentment burned it into my brain. This is why my husband gets to clean up all the puke forever.)

I do have memories...when she had RSV and was throwing up every time she ate...I remember I often had puke running down my bra. The joys of nursing a sick baby that no one tells you about! I don't think the La Leche League will be inviting me to be a guest speaker any time soon. (Plus, breastfeeding is free MY ASS. Only if you can get someone else to pay for the pump and all the little working parts you need to run the damn thing. If you pump, formula is not as expensive as you think. I did the math once. NOT advocating formula, but I will so poke holes in crappy propaganda used to heap on the mommy guilt.)

I remember reading to her the second her vision would let her see the pictures. Around 8 weeks. My husband made bookcases for her, which are stuffed with books. Right now we are reading James and the Giant Peach.

Of course I edit it as I read because Dahl has very weak sentence structure. Proof that craft is not what sells books, story does.

Anyway, getting back to the gifted thing I started to write about yesterday before my special little snowflake erupted into an epic tantrum like a two-year-old (ha!)...there's some talk of having the kiddo skip Kindergarten. I am not pushing for this, but I am wringing my hands about the best thing to do. She'll be an old 5 when she starts and she's ahead enough that academically she would be fine in first grade. However, the motor stuff and social skills are areas where I think she needs more time to develop.

The Kindergarten curriculum will be challenging for her not necessarily in content, but in motor skills. She'll know the answer, but writing it out or coloring it in will keep her on her toes. And she's a bit of an innocent...a nice kid with a tender heart...the first graders would eat her up and be gnawing on her bones by lunch time.

So we'll see. She still might end up back in OT. I want to see solid motor mastery from her as well as some social facility before I throw her into the deep end of the pool.

There, I feel better now that I organized my thoughts on the topic. Hope it wasn't too boorish for you to read!

Quick Status Check

Things are trucking along. I need to eventually buckle down and write a post about bio-identical hormone replacement because, unlike everyone who makes a million bucks hawking the stuff, I will not blow sunshine up anyone's butt.

I am happy to be on progesterone,  don't get me wrong, but five months in and we're still in search of the correct dose. I can still feel like yuck when I'm not on it, which is no fun.

This week has driven home how vital the progesterone is. The hubby was home most of the week on vacation. Since he is the human doppleganger of the Energizer bunny, we were up until 2 am watching movies on Netflix almost every night.

Thanks to progesterone, I have been able to function with very little sleep. So yay progesterone, but is it really going to take a f*cking year to titrate the correct does?

On the writing front, I got an amazing reader review on one book. Wow. Amazeballs. Love readers who get me. I wish I was a faster writer because then I think I would have a shot at really making money. I'm too slow to really capitalize on my skills, although I am now earning a full-time income with writing.(Holy sheeeet.)

And I have to say it here because I can't say it anyplace else without upsetting people..the kiddo's teacher thinks she's gifted.

Yep, my girl is smart. Just don't expect great penmanship or accurate scissor skills. The teacher does want us to work on her writing skills...and I just roll my eyes and think of the tens of thousands of dollars we poured into OT. Teach doesn't get that she's lucky my kid can write anything that resembles a letter. That it took us years to get her to do what she can do.

And now I have to run tantrum interference and somehow get the kiddo to dance class despite the screaming. So much for those five minutes I had to write a blog post, eh? Peace out.

Sitting Pretty, Achieving Nirvana

Yesterday finally seemed to be the corner and I turned it well. Of course, today I am wheezing but it's snowing and the temperature dropped by at least 20 degrees...both known triggers.

I don't do Black Friday. The commercialism of our culture makes me wince (even as I, at times, participate) and I hate crowds. So you will never find me anywhere near a retail box store this time of year. I like to spend my money online.

My friends tend to be like-minded. Plus they have kids.

So I invited everyone over on Black Friday.

WHAT WAS I THINKING?????!!!!

And you thought the people lining up outside Walmart at midnight were nuts.

Yowza.

It went well, but I don't know that I would do it again. First, I was still not 100%. Second, we came back from our Thanksgiving meal with family and started cleaning the house. The only upside was I hadn't gorged because I was afraid of eating anything that would trigger another reaction.

The one smart thing I did once I realized I'd just invited 8 children over to play was hire the neighbor tweens to come manage the hooligans. We organized a craft for the kids. I also told everyone to bring a flashlight and let them build a fort in the basement. The kids actually had a blast.  I think I earned my 'entertain flash mobs of small children' motherhood badge yesterday.

For the moms, I put together some easy appetizer platters: Hummus and veggies. Chips and salsa and some local kielbasa (we live where the Eastern Bloc migrated to in the US aka the land of plentiful kielbasa) with cheese. The hubby juiced spinach, carrots and apples for us because I hang with the kind of people who think juicing spinach is cool.

No, I have no idea where I went so wrong in my life. Juicing spinach...clearly there's nothing I won't do.

Anyway all us moms got to chat almost uninterrupted for several hours, which is essentially the nirvana of motherhood.

So while it was a pain in the ass to clean my house, I had a lot of fun. And mostly did not feel like shit. Today is better yet, despite the wheezing.

I'm reading all my labels and it looks like my house is 95% gluten free. Most of the foods I eat regularly are fine. There are some vitamins that are questionable, plus I still need to check my chicken broth (apparently they add gluten for some mysterious reason) and a few stray bottles of salad dressing. Everything else has been scrutinized and googled.

Basically, I just need to find a better response than 'eat all the bread in the house' when the fridge is empty. Or maybe, I don't know, invest in some gluten free bread to keep on hand for those days when I really really really need to go grocery shopping stat.

Loopy Loopy Loo

Well, I can breathe again. Went for a 2.5 mile hike this morning, the first exercise since last Friday and it was fine. Except...I could feel all the latent inflammation in my joints. Not exactly pain free. And I'm loopy as hell. I hate that feeling...like my eyes are spinning in opposite directions and my brain is on at least a thirty second time delay.

I think I'm going to see if Dr. Alternative can squeeze in an IV next week. The things I've been doing help with the inflammation, but I seem to be stuck and probably need some help getting over the hump.

And yes, it did occur to me that maybe the out-of-the-blue asthma was all related to the gluten I'd ingested.  Clearly the inflammation is system wide. But I was still in the 'Que? I no speak-a that asthma dialect' phase of things when I wrote the original post.

This whole reaction has been news to me.

While I am gluten free for the big things like pasta, bread, cakes etc... I still get gluten in hidden sources. I've been reading labels this past week, but suspect I got hit anyway sometime last night as today is a touch worse.

Looks like my next learning curve is routing out all the hidden sources of gluten.

Next

My girl is on antibiotics. It wasn't so much that she was sick, but that she just wasn't improving at the 4 week mark. She's got a lot of fluid behind her ears and the boogies in her nose makes the ped think sinusitis.

Hopefully she'll turn the corner now.

And I know no one really cares about these minute details, but it's in the forefront of my mind so it comes out when I sit down to write here.

I am feeling quite ill today for no apparent reason.

Fairly serious asthma attack out of nowhere this morning. Complete with muscle spasms between my ribs and the inability to talk without shortness of breath.

Now I'm exhausted.

I've taken the albuterol inhaler in back-to-back doses and have taken extra doses of inhaled steroids. Next step is to rest and then possibly the nebulizer.

Blech. I don't think I'm germ sick. No bug that I'm aware of, so the random asthma is a head scratcher. I think we have some kind of air quality advisory though. Something about lots of particulates? Usually I am not sensitive to that so much, but it is possible.

Let's end on a positive note. One book still in the Top 100. Two books on the Hot New Releases list. Wow! I'm excited about my next release which is in line with the current book selling so well and I'm working on a novella that is stretching me in new directions. Plus I think readers will really like it...assuming I can make a good cover for it.

A New Day But Someone Is Still Going to the Doctor Anyway

Finally today I feel like I'm going to live! Last night I was chugging water like crazy and even resorted to the nasty slime known as greens powder in an effort to mitigate all the inflammation. Between time and green slime, I seem to now be past the worst of it.

The whole thing has been a good reminder for me that it does matter what I eat and that I can't slack just because there's no good food in the house. I do eat carbs in nominal amounts on a regular basis and they don't bother me, but Friday was an unusually big load of gluten. Apparently I ate beyond my tolerance.

I regret ever bite.

Also, greens powder still tastes like frog dingleberries.

Just FYI.

But I'm going to drink some more today.

The kiddo is not doing so well. I've been dithering about whether she had reached a level of sick that required the ped....going back and forth as her illness waxed and waned. Last week I thought for sure I would be taking her in, but she seemed to rebound. Yet here we are at week four of this bug and she just needs to be seen. The congestion is not getting better and she's clingy and whiny as if she doesn't feel well. I haven't been able to document a fever with the thermometer, but she often seems flushed and hot.

So in she goes to the ped.

We put up the Christmas tree today...a little early because I still need to take photos for our Christmas cards as well as for the calendar we make every year for our family. After she went to bed last night, we snuck the tree into the house and this morning my husband turned on the lights for her so it would make an impression when she first saw it after getting out of bed.

She was so delighted, her gasps of awe were beyond sweet. She loved hanging the ornaments with me. And that was the apogee of our day, she's been either snuggled against my side or in my bed ever since. Poor kiddo.

I hope my chickadee feels better soon.

Inflammation Is Disease

I have a perfect storm of suck brewing.

Progesterone stopped for eight days.

A carb overload on Friday, the product of hunger when food stores were at a low point and the only good choice appeared to be bread followed by more flour based items too numerous to list.

The result...I feel like utter shit.

I don't have Celiac's. I would characterize myself as sensitive or intolerant, but not full blown Celiac's. I don't get the GI symptoms of Celiac's at all, but gluten does cause some serious inflammation. I currently feel like I'm 60 with bad arthritis and a side of flu. The joint inflammation is immense. Wow! Here's my up close and personal illustration of how inflammation is disease. I totally believe it!

Yesterday it took me until about 3pm to feel human. Today I started well and then collapsed into bed for the rest of the day, passed out like a drunk. I've totally ruined the family's weekend and the hubby is chafing at being reined in by all the stupid carbs we consumed.

Usually when I eat stupid carbs I take extra Alpha Lipoic Acid and that blunts the worst of the reaction. However this time I didn't have any on hand and boy, do I regret its absence. It could have saved me some serious misery.

Today I've been trolling various Celiac sites and blogs looking for a quicker way to undo the damage. Sadly, I'm pretty much doing everything I can:

-lemon water with freshly grated ginger
-green tea
-lots of water
-juicing spinach, carrot, apple, ginger
-taking Alpha Lipoic Acid (the second I was upright I went out and bought some)
-hot packs on the most painful joints
-alternating Tylenol and Advil for the pain
-extra sleep (Ha! Like I have a choice. If I go prone, I'm out right now whether I want to be or not.)

The last few rounds of no progesterone have been okay and I was optimistic that this one would be the same, but it has been more like falling off a cliff into the old bad adrenal days. And then I made it so much worse with stupid carbs.

Blech. Hopefully I will learn my lesson. For me, gluten is poison whether I have Celiac's or not.

Digestive Enzymes for GERD: One Patient's Experience

I've been meaning to talk more about how effective digestive enzymes have been at treating my GERD, but lacked time to sit and collect my thoughts. However, watching my parent recently choke, gag and force themselves to vomit because of a GERD related stricture has galvanized me into action.

GERD is a horrible disease. It is not merely heart burn. As it progresses it causes all sorts of problems...cancer, ulcers, difficult (and quite painful) digestion throughout the digestive tract, strictures which are acid related narrowings of the esophagus that cause food to become lodged in the throat (also painful with a side of induced vomiting to clear it out). While there are procedures to clear strictures, they can come back...within weeks.

By the way, I'm not listing any of this from a medical textbook, it is all just what I've observed in my own family, which is almost universally afflicted with GERD.

Due to my family history, I was very skeptical that Dr. Alternative would be able to truly get me off Nexium. Digestive enzymes? What kind of hoo doo was that? I have the kind of GERD where if I miss even one dose of medication I am spitting up acid and in agonizing pain. How was I going to stop cold turkey and take some natural remedy?

Puhleez.

As it turned out, the digestive enzymes didn't work so great in the beginning...but they worked well enough that I stuck with them. As time has gone on, they have become more and more effective. I am now of the opinion that anyone with serious GERD should explore whether or not digestive enzymes can give them relief and hopefully ward off the not-so-fun extras I described above.

There is not a lot of research out there. No medical studies. No official endorsement from the Mayo Clinic or other respected member of the scientific community. In fact it's possible that this blog post is the most comprehensive source of information on the topic..that's how little info is out there. So, of course, my gastroenterologist was just as skeptical as I was in the beginning. Now we are both pleasantly surprised.

Yes, digestive enzymes really do work for GERD. At least for me they do.

Here's how I did it: I took the digestive enzyme supplement recommended by my Integrative Medicine MD which was Enzycore. I took three capsules with every meal. At first, I still had heart burn and would supplement with Nexium. As time went on, I needed Nexium less and less until I was taking it maybe once a week--down from a high of twice a day.

Currently, I'm fine so long as I avoid junky processed food and foods that can trigger heart burn such as tomato, cucumber, chocolate, and peppers. I don't necessarily have heart burn every time I eat the wrong thing, but it does hit me maybe 4 times out of 10. However, I often find that an extra dose of digestive enzymes is all I need to do to control the GERD and I will try that first before I take Nexium.

In addition, I now take a lower dose of digestive enzymes, only one or two capsules with each meal. Sometimes I miss a dose and it's okay, I don't have heart burn...that never happened in the Nexium days.

In the old days if I missed a dose of Nexium (due to prescription running out or missing pills from dropping them), I would miss a day of work as I suffered the equivalent of an acid stomach flu until I could take medication. And it wasn't the kind of sick day where I kicked back and relaxed, it was sitting frozen in one position as horrible pain ripped through me and then running for the bathroom to be sick.

This remarkable improvement in my GERD symptoms has evolved over the last six months. While I can't say for sure, I am hopeful that I will avoid some of the horrible GERD complications other members of my family have suffered from. At the very least,digestive enzymes are much cheaper than Nexium with fewer side effects.


I spent some time googling and listed below are the best articles I could find regarding digestive enzymes. If you're curious about whether or not this is something you want to try, read the links below and then go see someone who specializes in integrative medicine for guidance on your particular situation.

This is a very balanced article on the topic that outlines what we know and gives some guidelines on what to look for in a digestive enzyme---if you read nothing else, read this.


An interview the Today Show did with Dr. Galland that's worth watching. 

Here's an interesting quote from Life Extension Magazine discussing how digestive enzymes are used in Europe:

"Supplemental oral enzymes have also proven popular in Europe as substitutes for non-steroidal anti-inflammatory drugs, or NSAIDs. They are used to treat conditions ranging from osteoarthritis to rheumatoid arthritis and other inflammation-related conditions. The results of various studies (placebo-controlled and comparisons with non-steroidal anti-inflammatory drugs) in patients with rheumatic diseases suggest that oral therapy with proteolytic enzymes produces certain analgesic and anti-inflammatory effects. Generally, these commercial enzyme preparations have been found to be equally as effective as standard anti-inflammatory drugs, but with better tolerability.36-39

In Eastern Europe, oral enzyme therapy (also known as systemic enzyme therapy, in recognition of the activity of these enzymes outside the digestive system and within the general circulation) has been shown to be effective in improving post-surgical recovery time, reducing the need for pain relievers, and diminishing the incidence of troubling edema, or fluid retention, after surgery.9,40 Czech surgeons reported, “Efficient edema reduction and thus accelerated healing…and analgesic effect…” with the use of oral enzymes.9"

Spooked by Patients with Asthma

The hubby's coworker's adult child just died of asthma today. My husband is beyond freaked out about me at the moment.

I watched him tell our pastor about the death and the whole time his eyes were on me, wide and full of horror.

"Don't die," he tells me later.

"I'm doing my best," I respond. "Why the f*ck do you think I'm pureeing and consuming spinach on a regular basis?" (Yes, I really do swear a lot. Actually more in real life than in print. Prepare yourself.)

I then went on to explain that death by asthma is usually folks who didn't have access to medical care or didn't follow through on their medical regimen or people who just don't respond well to treatment.

I tend to not respond so well once the asthma is full bore, which is a concern.

But I've been fairly lucky so far. Bad bugs but no intubation, which is a bit of a miracle.

I also take my meds for the most part. Oral or IV steroids do diddly squat for me when I'm flared enough to need them....so I hedge on those. I would prefer kickass neublizer treatments as well as IV magnesium, which are very effective for me, but no one ever listens to me.

Stupid patients. They don't know nothing. Standard of care all the way!

Strange to think that if I do kick the bucket due to asthma the root cause will be perceived to be lack of compliance to the medication regimen, not that no one listened to me.

If only she would've taken the steroids as directed...

Ah yes, if only I didn't want to completely jack up my adrenal system. I prefer not to breathe as opposed to take meds that won't work and just cause more problems, thank you.

Anyway, I do pay attention to my symptoms and deal with them fairly proactively. I'm stocked for bear at the moment having just refilled all my meds. Picture a plastic garbage bag...that's the amount of prescription stuff I brought home last week.

People were looking at me with pity--that's how much crap I had-- and I fought the urge to explain 'No, really, I'm not sick, this is just routine stuff.'  That probably would not have made any sense to them because since when do not sick people take home that many meds?

Believe it or not, I still have to go back for more. Most of the bulk is the stupid 90 day fill requirement from my insurance.

In a similar vein, I had an interesting conversation with a friend who was poo-pooing their sibling's outlook on health. The sibling has cancer and is quite fatalistic.

Out of the blue,  I interrupted my friend's kvetching and asked, "Do they have a chronic illness?"

Why yes they do and it's fairly significant asthma. 

I attempted to explain  that chronic illness warps your view of things. There came a point for me where I thought, "I'm dealing with all this bad health stuff and I haven't even hit the heart attack, cancer or age related health problem years. Holy f*ck is my future gonna suck."

People don't realize that asthma is not a minor illness, but it really can be a big deal, and once your health is a big deal on a somewhat regular basis, you just never feel safe again. You are not only sick but you experience all the side effects (most of which no one warns you about), gaps and failures in healthcare...not exactly a recipe for unblemished optimism.

I have to say this exchange strained my sense of friendship as my friend was quite superior in their 'I take care of myself and think positively and that's why I'm healthy' schtick.

Which, of course, brings the corollary into play that I don't take care of myself and it's the way I think that makes me sick. That's always a fun one to bring out at parties, am I right? In reality, there are lots of folks who do everything right and still end up with cancer....case in point one of my relatives.

Last but not least in this litany of patients with asthma...there's the kiddo's classmate in school...overweight and asthmatic with lots of steroids. I broached the subject of weight and steroids with the mom and whaddya know? No one ever told her. Basically, medicine is the root cause of diabesity in some patient populations.

Patients need to be told about how steroids impact weight and what to do to counter it. I do not understand why there is such institutional silence on this topic, not when steroids are so widely prescribed. Is it because no one takes the time to realize that no, it's not one five day steroid burst, but three of those in a month every month for years on top of IV administered and inhaled steroids?

Amazed

Good morning. I am doing okay. The cold turned out to be more wannabe than anything else. However, the kiddo is still quite sick with it going on week three and now the hubby is ill too.

The kiddo may need to see the ped, I'm not sure. No fever but awful congestion in her chest and sinuses that is not abating at all along with some minor reduction in normal activity. Croup is going around at preschool so I wonder if she has it? There's not a ton of coughing though so I don't know.

Also...does croup mutate too quickly for a vaccine? I was surprised to learn that there was no vaccine for it. We are so vaccine happy I was shocked to see science had let a germ get by without a shot to counter it. Somehow croup has wound up as being okay to have.

Last night we went out to celebrate our 17th wedding anniversary. Somehow we've stuck it out, through thick and thin, asthma and adrenals. Interestingly enough the start of our relationship coincides with my first adrenal suppression.

We went to see Skyfall and apparently we are the only people on the planet who were kind of 'meh' about the whole thing. Everyone seems to love it and my husband and I were doing the 'Are you bored? I'm bored,this could've ended thirty minutes ago' discussion in our theater seats. No wonder we're together, our pop culture radars are twins.

And then we went out to eat.

The whole point of this recitation is to get to this sentence...I felt perfect. Normal energy. No fatigue. No interest in sleeping at the earliest opportunity. No sleeping all morning to store up energy for our date...in fact I was planning to exercise until I ran out of time to do so, being so busy with other things. I am still amazed at the contrast of what I can do now vs. what I couldn't do before.

Uninsurable

One of the stranger life lessons, to my mind at least, has been the way life insurance companies have balked at insuring me. It's the asthma.

Even though for a long time I pretty much never ended up in the hospital. Insurers don't count ER visits for asthma, they just want to know if you've been hospitalized. Despite my lack of hospitalization no one wanted to insure me. This was before all the adrenal stuff started acting up so I was quite shocked. I didn't feel like a huge risk.

We did eventually get life insurance and I've held onto it with a death grip. If I lose it,  I will likely never get another policy.

If you know any young'uns with asthma, give them a heads up on life insurance. They need to lock it in when they are 20 or else they won't get any (assuming they continue to have active asthma like I have).

This all came to mind last night as we worked on the annual benefits selection from my husband's employer. It's interesting to see how the crappy expensive health plan we have is actually very expensive for our employer as well. It's the most expensive plan they have when I thought the whole point of the crappiness was to save them money.

Huh.

I think this means that program will probably be taken off the plate at some point and throw us into chaos as we scramble to choose from  the crappy, ugly, horrible health plans that are left. ( I swear, a managed HMO would be a death sentence for me.)

Anyway, this year the employer is offering Group Critical Illness Insurance. This is gap insurance that helps pay for uncovered medical expenses for approved 'critical illnesses' such as heart attack or cancer. It wouldn't help with a severe asthma episode, but would come in handy if I had a stroke.

I'm all for it assuming it works as advertised (which is always a concern when it comes to insurance). The last few years I've realized how quickly a relatively minor health issue can destroy you financially. Exhibit A: Asthma and adrenal problems. Exhibit B: Toddler with special needs.

I used to say pithy things like 'debt dictates your future' to my younger siblings hoping to help them avoid all the many mistakes I've made. And now I realize that health does too. Both are serious financial constraints and can quickly turn into financial disasters.

Almost Hormone Free!

Here's a good analogy...

Steroids are the AIDs of medication. The under reported epidemic. The testing is poor. The medical science and education are lacking. And the patients suffer.

Why is this coming up now?

Just saw Dr. Alternative today and we touched on how much the steroids have messed with my health.

And it bummed me out.

Beyond that we're playing around with the progesterone dosing. I'm a little fuzzy on the details because the kiddo was with me and refusing to behave so I was rather distracted. Let's hope it's spelled out on the prescription.

I did catch that now my estrogen levels are really low. I am unsure if that's due to the progesterone or menopause or some other hormonal weirdness. Dr. Alternative isn't sure either but we discussed the possibility of menopause (at 39!).  My estrogen wasn't terribly high before either, which is odd given the whole PCOS estrogen dominance thing that's supposed to be going on.

I would not be surprised if I'm about the cross the border into Menopause. Nothing hormonal works properly in my body. Here I am again not making enough hormones. Quelle surprise! So why the hell not be in menopause?

Due to my age it's time to start thinking about mammograms. Dr. Alternative wants me to do a thermogram/thermography thingymajig. I'm interested, but will have to research it.

As for the boogies of doom. I'm sick. Then I'm not. It's a weird thing. I think my body isn't happy with the increase in exercise intenstiy.

I don't know what to do about it. I need to exercise. For my health. For my sanity. To release the kinks from my horrible writing ergonomics.

I'm Hit

I think I finally caught the toddler's cold and I'm all up in arms with paranoia that this will be the one that pulls the world out from under my feet.

It's been a long time since my body wanted to just crumple to the ground. I was walking with a friend. We'd coordinated our daughters' dance class so we could have time to walk and chat. And all I wanted to do was drop where I stood.

The exhaustion level is just mind boggling.

Add lots of gunk and active asthma to that equation and it adds up to a bug.

Maybe if I go to bed I can sleep it off.

But first my patented mix of anti-bug vitamins.

Oh gosh...the weird thing....I just remembered...I had flank pain today which I wrote off as muscle soreness. I really should know better.

Boo!

So of course, right after I come on here and post 'happy, happy, joy, joy' the toddler's kiddo's nose starts dripping with the boogies of doom.

I started sneezing yesterday and am feeling kind of tired today. Not sick yet, but...

This cycle is rather defeating. Also, I probably should never admit that anything is going well, it's just too tempting for fate.

Anyway, I did go to a zumba class last week. Now that I'm inside working all the time, I find I don't want to exercise where I work and have felt the need to get out of the house.

I did the whole hour class with some modifications to keep the movements low impact. My energy was perfect afterwards and into the next day. That's a happy thing.

I'm going again tonight.

Which might not be wise given the boogie situation, but maybe I won't get sick, right?

It's pretty sad that I'm always just one bug away from going backwards. If I think about that too much it freaks me out.

Lots going on this week. My one book continues to do very well. That freaks me out too. It's hard to focus on writing the next book since the current one is such a reality show. I have developed the bad habit of refreshing my sales reports over and over just to see the numbers move. It's addicting.

We're gearing up to make Halloween cut-out cookies. Our traditional tentacle pot pie will be had for dinner sometime this week. Trick or treating was canceled due to the hurricane so we're busying managing the kiddo's dashed expectations. She's taking it hard.

Don't let the hurricane blow you away!

Happy Update

Things are trucking along over here.

I am excited to say that I no longer become ill with exercise. It might tire me out and I'm certainly keeping it low impact, but I can work out and then continue to be productive.

And when was the last time I was on here complaining about stomach flu whatsit? Several months, no? That's pretty major, in my opinion.

For the first time in 2.5ish years.

I currently do not have a cold, although I remain wary. Germs seem to lurve me long time. (Got my flu shot though!)

Weight is an issue. I've only gained about 7lbs BUT my body shape has changed as if I've gained 20lbs. I'm up a size. I'm sure this can be attributed to several factors:

1.Progesterone.

2.I'm not as fit as I was so I think the muscle tone has gone slack.

3.I'm not in the adrenal pit anymore so I have an appetite plus...

4.Full resurgence of insulin resistance. The adrenal insufficiency tipped the balance in favor of weight loss. That is now gone.

On the one hand, I kind of don't care because I'm just so happy to feel better. On the other hand...there's a lot of negative self talk. I beat myself up.

I'm avoiding the scale (because who needs that downer?) and focusing on exercise and eating right. We'll see what shakes out. Maybe someday the switch will flip and there will actually be a relationship between my lifestyle and weight. Right now there's no correlation.

Tomorrow I get up at the buttcrack of dawn to get a blood draw. We'll see what all my hormone levels are like now that I've been on progesterone for a few months.

As for writing...I did hit the Top 100. I was soooo excited. I have been working like a dog though, which is why I haven't been posting much here. Starting next month I hope to translate my stories into German which is, if my memory is correct, the second largest book market in the world.

I also need to take time off--my work ethic is killing me. I'm trashing my hands with all the clicking and typing and plan to get some dictation equipment to take the physical strain off my body.

I've almost reached full time income level from writing. Not a high paying full time income, but enough that I can say I'm a fully employed writer. (Also, I'm making more than most traditionally published writers see in a year, which blows my mind!) Of course, once the business expenses and taxes are taken away it's not as much. And who knows how long it will last? The internet spins on a dime. It could all be gone tomorrow.

Still it's very exciting! I also got some fan mail recently! Woo!

Okay, that's all I have time for... gotta dash to an appointment.

Groggy with Bad Knees

Today was much better than Sunday on all counts, but I think I need another good night's sleep to totally get rid of the tireds.

Tried to exercise...been trying to step up my game...and what do I get?

Another knee strain.

On my good knee.

I don't understand. I've been going slow. I wasn't doing anything I hadn't done before. There was no pain or any warning that things were in trouble. Just one squat and boom! It's done.

I was just making plans to go to a Zumba class too.

This is very frustrating. I wonder if anyone has counted the injury rate among the chronically ill? Because I am finding the constant cycling from conditioned to deconditioned to be very challenging.

I cannot be the only one.

Check In

So I thought the cold was gone. Even went for a walk a few days ago...today I wake up full of asthma and congestion. My left ear is clogged again.

I want to blame it on some glancing cigarette smoke exposure, but that wouldn't clog my ear.

Spent most of the morning in bed...worn out I think from the asthma, which is not horrible, but still significant. At least now the skin on my chest will move freely.

With regards to writing...I'm getting into audiobooks now. Collaborating with narrators and splitting the profits. It's been an interesting learning curve.

One of my books is likely going to hit the top 100 on Amazon sometime this month (this is the equivalent of making a USA Today or NYT bestseller list--I hit it once before on that book that Amazon mistakenly filtered from their search algo and the book never recovered). Hopefully I haven't jinxed myself by saying anything, but it's been fun to watch it sloooooowly climb the charts.

Too bad my health isn't on the same upward trajectory.

Frat Party Hours

I really want to go to bed. It's 11:30 and I can't.

My daughter is just about five. This is relevant, bear with me...

At her birthday party last week, I said to my husband, "Remember when she was a baby and we couldn't wait for her to be five because that would surely mean we were sleeping?"

He gave a weary sigh. "And now she's up until midnight."

Ahahahahaha.

The only upside...she sleeps in until 9 and sometimes even 10am. (I will start waking her up after the time-space continuum is shot to hell by daylight savings time. To try and influence her sleeping schedule before then would be lunacy and just cause more problems. If you don't have kids, you'll just have to trust me that daylight savings time is hellacious for parents. I dread it like it's a phobia.)

One of us has to stay up because she wanders and plays dress-up and reads books and sneaks down the stairs. And I send her back up the stairs and she cries and screams and on and on it goes.

I say I send her back up because, for some reason, I'm the one who's always stuck up with her. In fact, hubby's already asleep and I'm here typing away, burning with envy.

So the cold...kicking my ass. The usual drill....like any other cold. Just waiting to see if it's going to flare the asthma or not. So far it's sticking around...apparently it likes its new digs.

The Reveal

So it turns out I have a cold, which is probably why I felt sick after working out. Would I have become sick without exercise? I don't know.

It appears my body operates on a two weeks well, two weeks ill cycle. That seems to be the trend of the last two plus years.

It's funny because I was thinking of having a dinner party, but held off on setting a date because...what if I get sick?

And then I was arguing with myself that it was silly to hesitate because I'm better now, right?

Well, yes and no.

Clueless

Things are going well. Started progesterone and my energy has improved. Man, without it, I felt like the fatigue was going to spin my eyeballs back in my head and take me out at the knees.

The interesting thing is I am trying to amp up the intensity of my workouts and I'm getting the cold symptoms again. However, this time without the low energy.

I have no idea what that's about. None.

Documenting

Just a quick note...

Having some fatigue with weakness and flank pain today.

Potential factors....

-detoxing from Coke Zero (yes, again) so likely have some caffeine withdrawal at play.

-did some more intense exercise the last few days, which went fine in the moment, but has since seemed to bring those adrenal twinges back to life.

So no exercise today. We'll see how it looks after a day of low activity/extra rest.

In and Out

The past week has been weird. The asthma is a pita one day, improved the next only cycle back to bad. I also spent the week battling progressively worsening fatigue.

Would you believe I am still coughing up gunk from this cold!?

I finally felt up for a walk yesterday, but tanked significantly afterwards.  Almost comatose with the tireds. I hate how that feels!

So it would appear that I still can't outpace bugs on my own. There's still some level of adrenal response. Although it's not what it was, which is good.

Tonight I get to start progesterone again and I hope that will turn things around.

On the writing front... I have not had the most productive month. I had a bunch of releases early in the month, which I had written the month before, but have yet to produce much new work. The name of the game also happens to be 'release or die' so low output is bad.

Finally, last night, a story started flowing and came out fully structured. I was afraid to stop writing and worked until almost 1am. Previously, the stuff I'd written lacked plot, or I would know the entry point of the story, i.e. the set up, but flounder after that. Which makes me appreciate when stories show up with a beginning, middle and end that will only need light editing.

I much prefer sitting down to write knowing exactly what happens next and how it ends as opposed to staring at the screen going 'now what?' and then procrastinating by surfing the internet.  I hope one story will still find a middle and an end yet, but another I think will have to be trashed--it's no good.

My earnings quadrupled this month. I think that had some psychological effect on my output. It was one thing when the money wasn't much more than extra groceries, but now it's bigger than that. I found myself preoccupied this month, watching my sales grow and feeling a sense a exhilarated panic about it all.

 Surely the readers made a mistake, right? The returns will come any day now. I won't sell anything ever again. Next month will be back to peanuts. Etc...

Like I said, it messes with my head a bit. Thankfully this story showed up to save me from myself.

See Saw Down

And today is worse! WTF? This is confusing. I didn't think I had enough congestion left to cause a problem, and yesterday was great, but the asthma kept me up most of the night anyway. Hacking, hacking, hacking with crackling lungs. Out of nowhere.

I used the rescue inhaler to open the lungs and then tried a variety of things to shut off my cough reflex. I sucked on tic-tacs. Nothing. At one point, I groggily ate ice cream, hoping to numb my throat and nada.

I ended up having to sleep sitting up on the couch. Very uncomfortable. I was so wiped, I passed out in some weird contorted position that my back is very unhappy about this morning.

And now I'm all tired out from the asthma.

Huh. Not the direction I expected to go.

Well, today is shot to hell. Dislike!

Turn Around

Today is better! Woot! I was surprised at how it turned around as yesterday was kind of yuck-o. I thought for sure I was in for another week of just asthma, but so far so good.

Now back to exercise!

Maybe tonight yet, or maybe tomorrow. It's not been determined. I'm feeling delightfully lazy at the moment so we'll see...

Books are selling well. I have no idea if this is a new normal for me or if it will all go *poof* next month, but this month shows the glimmer of a full time income. From writing.

Never thought I would say that.

However, my latest projects, while being fun and stimulating, have not exactly been cooperating. I have no idea when I'll next have something ready to publish. I try to publish every month as that's key to selling books....having new content on a regular basis. 

Anyway, the toddler graduated from OT. So she's done with all of it...OT and PT and Early Intervention. At least for the moment, we may find ourselves returning in the future.

I am happy, but it's bittersweet as she's at the low end of skill mastery compared to her peers. She's going to have to fight for it if she wants to use her body in ways the rest of us take for granted. Medicine may be done with her, but we have to parent what remains and we don't know what we are doing.

Take the bike ride we took today. She's still weak enough on the left that she favors the right to the point where she's leaned so heavily on her strong side, the training wheel has bent sideways. We bent it back, but now the wheel is peeling and she rides at an angle that threatens to topple her over.

As she rides, she cries because her "legs hurt." This is part of her diagnosis. She can't get the bike started and requires lots of assists. Also part of her diagnosis.

I try to empathize, encourage and use tough love. I never know if I'm saying or doing the right thing, and, judging from my inability to motivate her or stop the tears, I feel I'm doing it all wrong.

Some days the bike rides are fine. Others they are a bawling mess--either she's crying or I'm fighting tears when I see how far she still has to go and I don't know if she'll ever get there.

So the moral of the story is....closing the gap on a skill deficit is not the same thing as mastery.

Huff n Puff

I thought I was better this morning, but then I got out of bed. I am a terrible optimist when I first open my eyes in the morning. If you told me I won the lottery and that there was a unicorn farting rainbows in my living room, I would believe you, right up until my feet hit the floor.

The adrenal piece is doing well with this cold. I have not felt like I needed steroids or that my energy is terminally awful. However, I've just started the '8 days without progesterone' portion of the program which may yet cause drama.

The asthma, however, is being a pita. Peak flow is down, I'm panting a lot and taking breaks whenever I do anything more intense than sit.

I would be surprised, though, if it gets worse than this. I think the cold is on its way out. I just have to suck up a few more days.

Fingers crossed.

De Nile

The toddler had a cold last week. It was so light, I didn't even worry about it.

I had a sore throat yesterday and just shrugged it off.

Went for a hike and found it hurt to breathe. Shrugged that off too. Mostly by not taking any deep breaths.

So the bug I currently have upped the ante into a fairly significant cold.

Blergh.

I don't feel adrenal though so there's that. For now, anyway.

But the asthma is not good.

Most people think of Fall as back-to-school. I always think of it as back-to-sick.

Just One of Those Days

Hi. It's Monday and I'm fat.

Okay, maybe that wasn't exactly a revelation for anyone.

However, the progesterone is affecting my weight a bit.

And the lack of squats is making my legs big.

Or maybe the progesterone just reassigns the fat. I don't know.

Because the number on the scale is not big enough to be a change in size, yet things aren't fitting correctly.

The unfatting of my body is never easy, not unless my adrenals are in the toilet.

I don't want to go back to the days of adrenal insufficiency.

But weight loss is damn difficult when I'm what passes for healthy in this malfunctioning body.

Sometimes I feel cursed.

Today is one of those days.

At least my books are selling?

Up Swing

I know what my problem was...my hormones changed and tanked me for about a week. Now they've shifted back and things are improving. Yesterday was much better...the overlay of fatigue was mild and I didn't have to lay down in the middle of the day.

Mostly it's just been fatigue, no weakness which I take as a good sign. The only thing is, even fatigue alone sucks. It's like having a hangover all the time. I just can't wake up. Gah. Dislike!

As a result of the tireds, I've been on the caffeine sauce again. Coke Zero to the rescue. Man, I really need to learn how to like coffee so I can get off this chemical shit. Tea does not have any kick to it and I needed a grenade launcher up my butt to get myself moving this past week. So I turned to Coke Zero. Just once a day, but yeah, not really thrilled about it even though it helped a lot.

Exercise has been regular, much to my relief, at least something went well. Mostly walking, a little bit of yoga and one bike ride. I've avoided strength work the last several months, but realize now that's a mistake. The hikes aren't getting any easier because I'm not building any strength.

But I don't want to over-do it either. I'm working on figuring that out.

Here's a dump and go recipe for you...love this one, sooooo easy.

Ham Dinner

4-5 large potatoes, peeled and sliced (use rutabaga if you're low carbing)
2 tbsps. olive oil
1 tbsps. herb blend of your choice (I use a no-salt blend with a bunch of spices in it)
1 tsp. salt
1 bag of frozen green beans (if you have a crowd, double the beans)
1-2 ham steaks cut into quarters. (1 ham steak serves 4, two serves 8)

1.Put potatoes in the bottom of the crockpot. Toss with oil and spices.

2.Top potatoes with green beans.

3.Add ham steaks.

4.Cook on low for 8 hours.

No you don't add any water...because the oil on the potatoes will brown them very nicely without any extra liquid. Also I think the frozen green beans provide all the moisture you need.

It's really lovely. My grandmother used to can her own green beans with bacon and this recipe infuses the beans with a ham flavor similar to hers (which we always scarfed down and coveted at family events).

Still Kicking

It's been a little over a week since my last post.

To mimic my daughter, What? (You have to say it in a freakishly high falsetto to get the full effect.)

The toddler lost another tooth! She's made $4 so far from the tooth fairy. I checked her other teeth and nothing else seems to be loose at the moment. I hope we're done for now. I'm not ready for her to be a big kid...even if she is taller than every second grader we've met to date.

I don't really remember what I've been doing the last week or so. Bought new tennis shoes which promptly gave me a blister the size of a quarter. In the process of shopping for the shoes, I apparently exceeded flip-flops' ability to cushion feet and did something to my right calf muscles. Something deep that did not respond to massage, stretching or light exercise. This has all precluded exercise for the most part...the blister especially is being quite a pest and not healing well. I use a lot of band-aids.

As far as energy...I'm in and out. I'm still miles better than I was, but it's not rainbows and unicorns every day either. I wish!

The hubby bought tickets to take me out on a dancing cruise. I was so excited. The day of the cruise arrived and I felt horrible. I had a terrible headache and stomach pain with serious fatigue. Whenever I sat down, I had my head in my hands. I probably looked like I was about to have motion sickness. We did dance a little bit and I enjoyed that, but it was a bust overall.

I tried to rise above it. I took a bunch of Advil. Even had a pop--the full sugar version--hoping the caffeine and carbs would perk me up, but nothing helped.

Writing has been keeping me busy and is the primary reason for my absence of late. In the last six weeks I wrote the equivalent of a short novel in terms of word count and have been working to publish everything. Writing has been so consuming that I've had to force myself to take days off. Except I'm terrible about taking time off. I try though.

Sales have been good. On one retailer they are dying but on another, they are experiencing exponential growth. I may see real money this month. Maybe. If nothing goes wrong (which happens a lot in this business).

I suspect no one here cares, but I think my next step may be to write something for an e-press. I think I want to tap into their mailing lists and marketing as a way to expand 'brand awareness' for my pseudonym. We'll see.

The other goal is two more cook books. It feels like everyone is asking for my almond flour recipes. So if I compile the recipes for those who want it, might as well publish them all. And I'm kind of obsessed with 'dump and go' crockpot recipes. Between writing and parenting, I love it when I can dump a bunch of stuff into the crockpot in five minutes or less. Crockpots are the easy button of motherhood.

Oh and I may be starting a non-fiction project with someone else, who has the necessary professional credentials. I might be going to a conference this fall to gather data for the project and am looking forward to it (if it comes to pass). This is kind of cool because for a loooooong time I was afraid to make any plans since I never knew if I was going to be okay or not.

TGIF

TGIF! I get to start progesterone again tonight! Woot!

The eight days without weren't as bad as it was last time. Thank God. Last time was horrible.

Now I'm afraid I won't feel good on progesterone. It's silly, but I keep waiting for the misery to start.

I feel superstitious about it. Like I should be throwing salt over my shoulder, knocking on wood, dancing naked around an oak tree under a full moon etc...

Let's hope it doesn't come to that.

Lower

Still chugging along over here. Energy is lower, but I'm hanging in. It probably doesn't help that we've been staying up late watching True Blood and then the toddler has been getting up waaaaay earlier than normal. The bookends of bad sleep.

Saw Doctor Alternative and we're pretty much done. It's just a matter of letting my body 'settle' into its new normal. Doc says the acne should improve which would be nice because cystic acne in your ear canal? Doesn't feel so good.

Actually everything is supposed to keep improving. I'm looking forward to it.

Sunday with a Cherry on Top

Today went well. I have no complaints.

Bummed around the house most of the day. Worked on a story that should be ready for publication sometime this week. Went for a 2.5 mile walk in 90F heat.

We made better tasting juice today--still not sure how I'm going to incorporate juicing into my life. Not really interested in a juice fast, but I like that we went through 10 large carrots, 4 cups of spinach, 2 apples, and some ginger today.

Energy is good.

Life is good. Steak for dinner! Now that we are out of house guests (temporarily) the budget allows an indulgence here and there.

I am afraid it will all end tomorrow.

Three for One

As of today I am undergoing...

Sugar withdrawal aka cherry pie withdrawal (it's big in Michigan).

Caffeine withdrawal aka Coke Zero withdrawal (again).

Progesterone withdrawal.

Wheeee! Isn't this fun?

We went to the grocery store and the woozies hit me like a tsunami of stupid. The hubby found me putting tea in the cart and taking it back out over and over again. When he asked me what I was doing, I could only look at him blankly. He gave me the car keys with instructions to "go sit in the car"

Only I couldn't find the car.

So I went back into the store and stood in the checkout line with him, giggling maniacally.

Because I had this movie going in my head of me taking off my clothes and streaking through the grocery store. When the cops arrested me I would blame the complete and total lack of drugs.

Oh yeah, completely unhinged over here.

I kept my clothes on (cellulite came in handy for once) and went home to crash into bed instead. I didn't sleep though, my head is screwed on too weird for that.

Now I'm drinking Green Ass-ade.

That's when you buy a juicer off Craig's List and concoct things to drink. Like lemonade with ginger and Romaine lettuce.

You would think that the sourness of the lemon and the zip of the ginger tempered with the sweetness of Stevia would overcome the flavor of Romaine juice.

You would be wrong.

Ass-ade people. And not just any ass-ade, it's green, yo.

Yo, yo, yo.

I think I'm still tripping a bit. I have no idea why. I am not on anything!

Anyway, I thought I could maybe do something useful with juicing. I make a mean blueberry spinach smoothie (hint: add cinnamon and stevia). I've made a primitive juice with a blender, straining the liquid form a spinach, apples, stevia and ginger puree. It was delicious.

I thought I was ready for this juicing thing. I wanted to 'flood my cells with nutrients.'

And what do I get? Green ass-ade.

Turns out my original opinion was right: The reason why juice recipes are 99% fruit and 1% vegetables is because veggies don't taste better in liquid form, they taste worse.

Much much worse.

Anaphylaxing asked me on my last post:

"Hang in there. I'd be interested to know in the low progesterone symptoms vs AI symptoms or are they the same for you?

What's your current view for steroids?"

Progesterone and AI symptoms are pretty much the same in terms of fatigue with weakness. My unedumacated theory is that I didn't have enough substrate to make what I needed and taking progesterone improves that situation. However, I can still outpace my stress response as last week's biking episode showed, so I would imagine I still have to be careful with illness and exercise--no extremes is probably best for me. Overall, progesterone is a HUGE improvement. I think it will eventually give me my life back.

And believe it or not, there are a lot of people who get 'sick' after exercise. Some of them have AI. Some of them fall under chronic fatigue syndrome or celiac's disease. I am actually not alone. Also not the only one who finds that vitamins turn things around.

As for steroids, haven't been on any since late May/early June. Haven't needed them. The bike incident was the closest I've come to it. Although I haven't been pushing exercise like I have in the past, I've been focusing more on the demands of daily life.

I can't and won't rule steroids out until I've gone a year without them. I can always get a few good weeks or months here and there. I need more time to pass before I declare the cycle broken. Way too soon to claim a victory.