Tuesday, January 29, 2013

Things I Forgot to Mention

A few things I forgot to mention yesterday regarding my appointment with Dr. alternative.

1. My blood pressure has spiked and is resisting treatment. Again. This is not awesome. It's not high enough to go to the ER or anything but it's getting there. I finally just now had an almost normal reading.

I have talked to my primary care physician about these spikes, these attacks, and they have been no help. It's a case of 'I didn't see it so it didn't happen' medical care. Kind of bizarre to me because hypertension is very common, this is not weird adrenal stuff so why the brick wall?

Yeah, doctors say they want to partner with patients and they say that they want to listen, but what actually happens is I'm left to deal with high blood pressure on my own. It's going to take an ER visit at this rate for anyone but me to pay attention.

2. I am having issues with Dr. alternative's superfood vegan bias. I say low-carb and they picture bacon. For the record, I eat broccoli a lot for lunch right now. Just broccoli with a little bit of butter and some Parmesan cheese. Yesterday I had broccoli with hummus. Dinner tonight will be pesto with zucchini noodles, broccoli and chicken.

For the love of preventing diabetes, please note all the fricking fracking vegetables there and the utter lack of bacon.

It's very difficult to work with someone who perceives you to be only consuming processed meats. I eat my chia seeds. I puree spinach and blueberries. Stop with the vegan bias already!


4. Food allergies. I read an interesting article in the waiting room in some sort of medical journal for alternative medicine. The article was written by a board-certified physician and it was about how hormone disruptions can impact food allergies especially for patients with estrogen dominance. I thought that was very interesting. Unfortunately, replacing the progesterone missing in my system has not improved my reactions to wheat, tomatoes or peppers. In fact, everything got worse.

However the article did point out that skin testing does not always yield a reaction in patients with hormonally driven allergies. I thought that was interesting considering I am actually probably going to be having some skin testing done sometime in February.

I am not too concerned about food allergies except that I just need to know what my risk is and whether or not I need an epi-pen, because wheat does affect my breathing. If it was just a rash I would not care and I would not be doing any allergy testing, but with the itching and the triggering of the asthma and feeling the inflammation in my lungs I want to double check and make sure I don't need an epi-pen.

The other thing that's interesting about the hormone connection with food allergies is that it leads to the idea of sort of cyclic sensitivity. With tomatoes and peppers, sometimes I can eat them just fine and then other times they make me very sick with heartburn. Sometimes the raw food multivitamin I take that has tomato and pepper extract in it is fine, sometimes it really bothers my stomach and I can't take it. I wonder if it relates to my hormone levels in the moment?

Hey I dictated most of this post! I'm getting there!

Monday, January 28, 2013

No Alternatives to Aging

Comments like this are the reason I blog:

Thx u so very much for sharing your info. No one told me about withdrawals. Had to go thru several pages on net bfor found u. Even tho I feel horrible at least hav kind of peace of mind & not so scared cuz of your info. God bless u. Kay on Self Care for Steroid Withdrawal Symptoms or Adrenal Suppression
Two years later I'm still getting comments on some of these old posts. It's amazing.

By the way, I'm dictating this post so if there any strange errors that's why. I try to edit as I go, but sometimes I don't catch things.

I saw Dr. alternative today. Menopause is definitely on the table. Possibly it's been in process since I was 37. Time will tell. I did more blood work today and those results will inform the bio identical hormone replacement regimen going forward.

With PCOS, irregular cycles are actually normal. However, during IVF I was prescribed bio identical progesterone with the intent of inducing a cycle and it always worked. Now I take progesterone and nothing happens. While on the birth control pill there were some changes too, but I only really put it together in hindsight. It all suggests to me something has changed. I also have some minor could be considered menopause symptoms. Haven't caught on fire yet though. Maybe that comes later.

(Side note: Dragon thinks 'inducing a cycle' should be 'inducing a psycho' which is a pretty hysterical mistake.)

So yeah, probably early menopause. At some point I need to go see the OB/GYN and get their take on things, but for now that's where things stand.

The bummer is that menopause is not a cure for PCOS. I poked around the Internet and looked at what other patients said and menopause can go one of two ways: The PCOS improves and everyone lives happily ever after without the torture of hormone weirdness or menopause is a new level of hell.

The upshot of today's appointment is I am thinking of starting progesterone again. I was going to stay off it and see how I felt, but I have had some weakness and fatigue again--there's nothing quite so lame as losing all your strength in the middle of a flight of stairs. So I saw how I felt and it was not good, ergo I'm going back on it and let's hope it continues to be a good idea for me.

Perhaps some of the issues I have with the treatment will resolve when we start treating this as menopause and not simply a deficiency of progesterone. We'll see.

I bet it's going to take me more than a year to figure this out, if I ever figure out. If that's even possible. It's not this much work for most women who use bio identical hormones, but it apparently is that much work for me.

Hormones can bite me.


By the way, I forgot to mention the kiddo is breathing much better. Just in case anyone was worried about her. The dog, however, is still incontinent despite increasing the medication dose. I am not sure what we are going to do for her.

Getting old sucks. We're both menopausal bitches together.

Friday, January 25, 2013

Current Events Edition

The hysteria over guns is irrational to me. Guns are not going away. Relax. No one's gonna take yer gunz. You'll still have bullets to burn no matter how many five-year-olds die. There's an apocalyptic mentality to the American psyche that I do not understand. We are not a country of reasoned discourse.

Someday I will tell you about my seriously mentally ill relative who stormed a school once. With a school aged child and that history, I'm very concerned about safety, mental health, and gun control. I have personally seen how few barriers there are to mass violence in our society. It's a tough story for me to face and I've been struggling to even say this much about it. I'd like to share it though because it's an important illustration of how we fail to protect our kids as well as care for the mentally ill.

Regarding Manti Te'o...am I the only one watching that soap opera and thinking he's likely gay? He had a gorgeous girlfriend he never saw, made sure everyone knew about her too, and I'll say it again, he never saw her. Never. This sounds like someone trying to cover something up to me, but what do I know?  Yes the hoax was awful and wrong, but his behavior wasn't normal either.

I remember college aged men...they were not so much into the  'I'll just talk to you on the phone and never see you' thing. The ones I knew were more the 'how many drinks will it take to get you naked in my room' type.

(The answer for me by the way? Not happening. I don't drink.)

I'm glad to see American women now have the opportunity to die the same as men on the battlefield. Whee! Shootings for everyone! Huzzah! Now if women could just get paid the same too, we'd be all set.

On a health related note...there was a piece on Rock Center (is that what it's called?) last night about technology and health care. Apparently you can use your iphone now to run ekgs and test blood sugar. It's quite fascinating. My husband got all excited for me and then I pointed out the iphone has no hormone capabilities so not a win for me. Also, I still have the free, cheap phone. I've looked at upgrading as a business expense and I just can't convince myself to spend the money. I don't mind buying a fancy phone but these $150-$200 a month data plans are just too rich for my blood.

So I guess I'll have my heart attack the old fashioned way.
 









Tuesday, January 22, 2013

My Hair Is too Hot

Editing is the process by which you stare at words and rearrange them like a shell game until napalming them all sounds like the best idea of your life.

In other words, hello from editing hell.

I can't take it anymore and have thrown in the towel for the night. Only I feel guilty for slacking and am sitting here as if I will magically start working again.

So hi! Let's all gaze at the navel that is my health.

Actually, I prefer being off progesterone. More even keel. At least for the moment. Things could change and it make take a few months before I know one way or the other. It will be interesting to see what happens with the blood work.

I must be feeling confident about my health, though because we're looking into hosting an exchange student. Why? My family does this. It's a cool thing to do for the kiddo and I've learned that I enjoy having house guests because I'm always bummed when the house is just us. However, as I was talking to the coordinator who screens families, I began to feel a bit like I was tempting fate. Then I thought maybe I'm being blind to reality. One bug and I'm done. I hope I'm not setting myself up for failure here.

The temperature dropped to single digits today and the kiddo got a snow day. Bah. Not good for mommy. She can't entertain herself so it's show time all the time and this mommy is too old for that business.

Also we both woke up with crappy lungs. I'm now managing meds for three people: My kid, me and the dog. It is bizarre to be sucking inhalers with my kid. NOT a mother-daughter bonding moment I'd ever dreamed of.

As for our ailing pup...I often forget to give the dog her meds and make the hubby fill in the gap. He's been a bit petulant about it because it's usually after we're all tucked in for the night that I smack his shoulder and go "Oh shit, I forgot to give the dog her meds. Will you go down and do it?"

He tries to grouse. but I'm not having it. Who was it that sat through the five hour ped appointment with a cranky kiddo? That's right, me. I think he can go downstairs and hand the dog a pill that tastes like a treat, meaning she wants to eat it, no shoving it down her throat required.

The kiddo is a prickly pear at times, partly due to her neurological issues which means she can't always moderate her emotions as well as others. Recently she treated us to an epic tantrum that started with the statement, "My hair is too hot." Knowing her as we do, the words chilled us to the bone. It was the equivalent of that moment in a horror movie when you know the character on screen is next. She screamed for a good half hour after that.

I kind of feel the same way today!

Also, now we go around asking 'is your hair too hot' every time one of us gets snippy.

Possibly this entire posts makes no sense. I blame editing.

Sunday, January 20, 2013

Status Report

I should be dictating this as I've designated these blog posts as 'practice' for getting used to dictation. My hands are a mess, I need to acquire this skill asap. However, the kiddo is behind me watching My Little Ponies on Neflix. Yes, she loves the gateway drug to 'tramp stamps'. (I'm pretty sure the cutie marks are sponsored by the tattoo industry.)

So typing it is.

We went to visit one of the grant eligible schools for the kiddo. Picture a large, sweeping mansion with art nouveau details. The architecture was ornate enough to be a set for some 1980s movie about a rich girl learning what life really is.

Something like that.

The library alone had gilded and fluted columns with crystal chandeliers. It would be like if The Great Gatsby was a school.

It's about an hour from where we live and located in a financially elite area. The tuition is also twice that of the grant, something we didn't know previously. The high tuition means the school likely attracts mostly autistic kids with intense need for services. Because autistic kids would receive a grant to cover the exorbitant tuition.

Since our grant income is limited and we don't have an extra grand a month to throw at a tuition and a jammed rush hour commute, that school is out (although my heart will go on for that library).

It's difficult to quantify what it is I want for the kiddo. I do know she doesn't need to be in a 100% special needs school such as the one we just toured. She benefits from peer models and has done well in pre-school.

My thoughts so far are: I want a small class size with services like OT available should she need them (she will), a sensitive gym teacher who gets that missing the ball is actually the best my kid can do as well as an administration that's going to listen to my input because it's really going to take a village to raise my kiddo. We're all going to have to be pulling for her.

I'll know better what the kiddo really needs after the cognitive testing.

We tour another school next week and I'm crossing everything that it's the right place for us. We're in a bind because it looks like she lost the lottery for the charter school in our area. The public school option is...not great. She'll be lost in a sea of kids who don't know the alphabet and can't count past five when she's reading (yet is probably dyslexic) and doing basic addition and subtraction (she's surprisingly good at math).

As for how I'm doing...nothing much has changed. I was suppose to start progesterone a few days ago but am holding off to see how I feel. I'd like to get another baseline test of all my hormone levels just to see where they're at.

All my books are off the Top 100. Nothing lasts forever (except adrenal f*ckery it seems) so I knew this day was coming. It's making me nervous because I don't know what my income will be like now. I hope to finish my next project this week and am fleshing out the idea for a story two projects from now. I try to be sure I have something ready to publish every month, although it's quite a difficult task the longer the books get.


Wednesday, January 16, 2013

Stuck

The kiddo was breathing better and then worse. Back and forth. We had her follow-up today and the ped agreed with me that there's enough inflammation still there for her to back slide easily.

So on to Qvar we go. I am very pleased with the ped. They listened to why I wanted to go with inhaled over oral steroids and agreed. I'm slowly getting used to working with a physician who doesn't think I'm an idiot. (This probably means they will a)retire b)move c) get hit by a bus. There's no way this can last.)

I am still bummed that the kiddo has to deal with this. She was supposed to take after her father, but apparently her DNA did not get the memo. I try to take heart in the fact that the early childhood onset phenotype for asthma tends to be less severe than my adolescent onset.

Of course the literature says any family history of asthma makes the asthma worse. Sigh.  I just hope her future is not as medically messed up as mine.

My health continues to be that weird, quirky nutjob no one can figure out how to relate to without it being awkward. I do think I maybe possibly am going through menopause at 39. For realz. I won't shock you with paragraphs of information about what's happening with my vagina, I'll just leave it at menopause.

You're welcome.

My whole body is wrong. My weight is off. The rash comes and go, itching like poison ivy. My energy is off (but it's not adrenal suckage anymore, it's some new beast I have yet to name). I seem to have come through the worst of the adrenal f*ckery and landed smack in the middle of other problems that are just as annoying.

I am not convinced that progesterone is going to be the magic bullet. As time passes, the picture that is emerging is that of a very choppy treatment. There's the adjustment period going off it and then the adjustment period going on it. It lurches through my system, jolting and shaking me as it goes.

Yes, I've made progress, but the new me is just another shade of dysfunction. I'm still far off from normal. The progesterone honeymoon appears to be over. This is as good as it's going to get.

I am never going back to who I was. I need to accept this. But man does it suck when 40 feels like 80. I feel frail, brittle, bloated, itchy and arthritic. Stuck.

Sunday, January 13, 2013

Progress

Hello. I'm dictating this blog post using Dragon naturally. I wonder how it will go. If you see any strange typos it's probably the software.

The kiddo seems to be improving.  The pediatrician taught me how to listen to her lungs without a stethoscope and I can tell if she's getting worse or not. At first, the nebulizer treatments opened her up and made her wheezing worse, which is an indication of how tight she was. Then they started to clear her up.

My husband feels better too. So all the people with inhalers are doing okay. Even I had a good asthma run. The temperature went up by 30°, which is a big swing, and my lungs didn't care. I've really enjoyed going for walks the last few days.

My dog, my labby love, is not doing so well. She is 12 and that is pretty much the end of the line for most labs. She was spry and sassy up until the last week or so and suddenly she began soiling her bed. Both fecal and urinary incontinence. She became quite depressed and distressed about it.

On top of that, there was some change in cognition. She was forgetting the rules reverting to some puppy like chewing and naughtiness. Just not herself.

So we took her to the vet and we're going to try some medication for the incontinence. This will hopefully buy her some time as well as improve her quality of life.

We are in the process of doing some end-of-life planning for her. We are hoping to leave the state to spend some time with my husband's family this coming Spring and my gut --the same gut intuition that became so hyper about the flu--is concerned that she will have problems while we are away. I just have a bad feeling mostly because of the mental decline. I need to set up a care taker who can handle an elderly dog as well as have a plan in place with her vet should it become necessary.

She's a great dog and we will miss her. And I really hope my intuition is wrong.

Thursday, January 10, 2013

Everyone's Got an Inhaler

In the middle of the never-ending doctor's appointment yesterday, I took the kiddo out to eat something.

I took her to Wendy's explaining it was easier for mommy to avoid gluten there than at McDonald's. As she watched me remove the bun from the hamburger she said, "Mommy, do I have a rash on my neck too?"

It felt like we were revisiting the theme of ' being just like mommy' which arose when she was told to take an inhaler a few weeks ago.

I looked at her and said, "You will always be my little girl, but you are not mommy. You will have your own life. It will be different from mine."

And then I took her to get a chest x-ray.

Later, the ped called with the verdict of asthma, not walking pneumonia.

Right now we are doing nebulizer treatments at regular intervals. The next step is steroids.

It's all just like mommy.

The universe is a sick, twisted bitch.

My hope is to see if we can skip systemic steroids and go for an inhaler like Qvar. Given my experiences, I think systemic steroids should be avoided at all costs. If there's a first time, there's a hundredth time with steroids. Not to mention she's way too much 'like mommy' for me to think oral steroids are no big deal. Keeping her off the oral form is her only shot at not repeating my history.

My husband isn't breathing well either. The flu has left him with a nagging cough and some asthma-like wheezing. He talks about going to the doctor, but it never happens. Instead he runs off to play hockey...except he can't breathe well enough to do anything but pant on the sidelines. He's now got one of my inhalers in his pocket.


And my twelve-year-old labby love is sick and going to the vet today. Hopefully she's okay and just needs antibiotics. At the rate things are going now, she'll get an inhaler too.


Wednesday, January 9, 2013

Not As Planned

For the last three months my kiddo has been sick. We've gone to the ped every month with varying degrees of success. The antibiotics seemed to work, but then she was sick again. We were instructed to treat it as asthma, which wasn't effective.

Today we went in for what was supposed to be a check up for the fluid behind her ears only to find out her lungs were bad enough to need a breathing treatment. And chest x-rays.

I don't know if there's a diagnosis beyond 'bad lungs' yet. The ped will call us later with any diagnosis and the plan going forward.

This was not how I saw my day going at all when I left the house early this morning.

Five long hours later, we are home.

I'm wiped. Don't know if it's because I'm not on progesterone this week or if it's just normal 'my baby is sick' stress.

It doesn't matter because the day isn't going to stop. The to-dos march on.

Tuesday, January 8, 2013

Public Navel Gazing

I'm on Nexium right now which is helping the heart burn. The odd thing is, a few weeks ago, Nexium did nothing and it was digestive enzymes that were helping. Such a flip-flop waffle body I have.

The way I'm going to do it now is simply to minimize tomatoes and peppers in my diet and use Nexium before eating them as well as continue to avoid wheat.

I've mentioned before that I'm a recovering preacher's kid and we recently joined a church in our neighborhood. It has not been all that positive of an experience.

Something you may or may not know about churches is that the janitors, organists, choir directors and pretty much anyone on the Trustee Committee are all huge pains in the ass. They have agendas. They dislike people and manuveur within the congregation solely based on who they are out to get. They gang up on the pastor.

It's like work, but without the mediation that HR can provide. Plus your entire family is a target.

This bullshit is one of the reasons why I avoided the church as an adult. I'd had enough of it growing up. Everybody is 'happy, happy, Jesus, Jesus' to your face and then twisting the knife in your back.

But I had a kid who wanted to know about Jesus. So off to church we went and now I'm not sure it was such a good decision.

Last Sunday we got caught in a pissing match between the pastor and the janitor because my husband got suckered into being a Trustee. We had ringside seats. I felt bad for the pastor who had no idea how to manage their employee. Corporate America may be the root of all evil, but they are very good about creating SOPs to follow and do provide useful management training upon occasion. Churches don't offer much in that area beyond prayer and leaving it to Jesus.

To top it off, I am running the Women's Bible Study. This has to be a bad sign when the new kid is left with such a large responsibility. I don't mind organizing or facilitating, but I am not dogmatic, nor am I a fundamentalist. The curriculum is exactly that...a series of DVDs with a privileged white woman who urges us to pray face down on the floor as we invoke God as our rescuer because our first world problems are that important. It's Checklist Christianity...if I do xyz then I am a good Christian. And it's bullshit. I will do my best to not say anything along those lines, but it's going to be tough because I feel very strongly about it.

So now I'm stuck. The hubby is stuck. The seamy underbelly of faith is showing. This is probably not the right church for us and there may not be one that would be a good fit.




Sunday, January 6, 2013

Fire in the Hole

I have no idea when I will be able to sleep tonight. I have such horrific heart burn and I don't know why.

This suspected wheat allergy/intolerance thing is hard on my gut. I not only get the rash on my neck, but the GERD spins out of control too.

And it takes days, if not weeks to calm down.

I am not sure what I ate to piss it off now. All I can think of is...I have been showing heightened sensitivity to peppers and tomatoes again and I had some peppers yesterday. I also forgot myself and licked some powdered sugar off my fingers...powdered sugar that had been on a flour pastry.

It doesn't seem like that should have tipped me over the edge into the volcano, but something sure did.

And yes, the rash is back..this time mostly under my collar bone with two little devil horns extending up the sides of my neck.

I wouldn't mind so much if the GERD wasn't so dang painful.
 

Thursday, January 3, 2013

Ork

I worked out last night...took me all day to wake up and feel up to it. Which was a bummer.

I'm on a new progesterone dose and that may be part of the issue. I don't know.

The work out went pretty well. I pushed myself through it and don't feel too bad this morning.

But I think I'm going to drink a Coke Zero today.

I need a kick in the pants, badly and my body has lost its ability to provide one organically.

Why, yes, I am talking about organic kicks in the pants.

I can really go down some strange rabbit holes sometimes.

Anyway, I did some preliminary research on progesterone as a treatment for PCOS in the hopes  of someday writing an informed opinion as a patient who has tried it.

It's a finicky thing this bio-identical hormone replacement. You really have to stick with it and monitor things closely, which is expensive and time consuming. I'm 7 months in and we're still sorting out the dose.

You would never guess that from the rah-rah cheerleading from Suzanne Somers and her ilk, which irks me. There's a dishonesty in her books and marketing that fails to give proper guidance to patients. Bio-identical hormones are not a miracle cure, they take work and careful attention to detail.

I hope to expand on this in the near future so there's a resource for other patients that is based on actual reality and not the pipe dream being hawked by profiteers.

As for the writing, since I'm using a patient blog as my writer's diary these days, another book hit the Top 100. That marks four now.

And umm, I have some fans now.

That freaks me out.

I now know the 'voice' and writing style that resonates with readers. So naturally my next two projects are completely different.

I didn't plan it this way. I had no idea things were going to take off so I just kept writing and now the pipeline is filled with things my fans probably won't like. Whoops.

Well maybe I'll reach some new fans.

Now just to write faster.

*Title courtesy of Mr. Popper's Penguins which I'm currently reading to the kiddo. Ork pretty much sums it all up, don't you think?


Tuesday, January 1, 2013

Lucky 13

At the beginning of every month I write out my to-do list for the writing. I did that this morning and hovered between wanting to dive in and get cranking or going back to bed.

I'm having a sleepy couple of days. Can't seem to rev my engines (also filed under: God how I miss Coke Zero).  I did a harder workout on Sunday, the first since the flu and it tanked me. I ran into someone at the grocery store the day after. They greeted me with a smile and a 'Are you feeling okay? You look wiped.'

(Interestingly enough this was the same person who pulled up alongside my car when I had bronchitis in May just to tell me I looked awful. I wonder what that's about.)

It was reminiscent of the bad old adrenal days.

Although it is not new that hard workouts are too much for me. That has been relatively consistent. The main improvement is that I no longer have adrenal related GI stuff after intense exercise.

My hope is that this is just an adjustment period. Or maybe this is the pattern where I get through an illness okay only to emerge with a lagging stress response.

I'll stick with it for a month or so and see if my energy improves as my strength grows.

May 2013 be kind to everyone it meets.