Saturday, June 30, 2012

Ping Pong

After over doing it at the pool Thursday, Friday was a suck of fatigue and wannabe cold sores. That improved overnight, with rest.

But now I'm hitting the wall and BP is dropping. Not slamming me to the floor this time, more gradually deflating down into the pit of fatigue.

Friday, June 29, 2012

High Exhaustion

BP still was not behaving so I took another dose of the prescription medicine yesterday. It did nothing, but today I seem to be trending lower.

I may be also a bit 'adrenal'. We went swimming last night and I got ambitious. I'm better right? I've been walking, up hills even. I should be able to do stuff now, right? So every 'adult swim' break, I ran my ass off in the pool. Today I'm sore and heavy-limbed and forgetting to eat.

I just ate and am hoping it will improve my sense of fatigue---not eating is half the battle sometimes.

Wednesday, June 27, 2012

Bitter Moment

The BP is high again. I'm waiting to see if prescription stuff is going to kick in or not. If it doesn't, I guess I call the primary care doc and see what they want to do. Because while, yes, there's an herb for that, there's only one, apparently.

Actually, in researching herbs and natural shiznit, there are not many promising remedies for high blood pressure. So I'm in the process of exceeding natural medicine's capabilities as well as those of mainstream medicine.

I've lost 40lbs, I've cut out salt, sugar, flour, processed foods and yet I need twice the blood pressure medication. And now that may not even be enough.

Are there specialists in blood pressure? I would love to talk to someone who could just explain this craziness to me.

You know, I am not all that overweight. I'm fat, don't get me wrong, but I'm not big enough for Biggest Loser either. Nor am I a manager at McDonald's like a person I know. They gorge and gorge on that junk food and are easily 150 lbs overweight and it doesn't touch them.

I'm over here making smoothies. Out of fucking spinach. Eating walnuts when I actually don't like them very much and eschewing chemicals and all the other fun stuff.

And I can't lose weight. I can't get ahead in my health. Meanwhile, I'm surrounded by people bigger than me with crappier diets who are just fucking fine.

Although, to be fair, the GERD is going to be a success story at this rate. It does really well with digestive enzymes, ginger for breakthrough and avoidance of trigger foods. I went from Nexium twice a day to maybe twice a week. If that.

However, GERD was the thing that bothered me the least. As in who cares if I don't have heart burn if my heart explodes from high blood pressure or I give myself a concussion from low blood pressure? See also, I still have adrenal issues.

Hello, body? This is your brain speaking. Get it the fuck together.

Shit, my parents at 60 are healthier than I am. The boomers are going to outlive me at this rate.

Tuesday, June 26, 2012

Local Adrenal Bitchiness

BP is better today. It was still elevated this morning, but has been dropping.

I've been salting my food. On purpose. Because there seems to be a paradoxical relationship there. Salt stabilizes.

Don't ask me why or how or what.

I'm just muddling through, following my instincts (a distinct salt craving) and checking my BP frequently.

Saw the doctor. Licorice is no more. We had a roundabout conversation where they want me to go to the ER with my body slamming BP and I don't want to because, frankly, I'm pretty sure the ER would not care. I'd rather just fall back on the prescription meds. Then if it's out of control still or I pass out (I swear that day is coming), we could try an ER.

Preferably before any car accidents.

However, this is truly adrenal with a side of licorice. I've had this pattern before. I had that whole cold (which is pretty much done with me, the lead-up was the worst part adrenal-wise) without stress dosing which did not help. At all. There's just a lot of chaos in my system and the adrenals no likey.

Bitchy adrenals are evil devils.

Anyway, had a great day overall today. At least after the doctor's appointment. Another one-stick IV (squeee!).

Hubby came home an hour early with a birthday present for me. It's a gorgeous lamp with a glass lampshade. I love bright, shiny objects (yes, you could give me empty soup cans and I would be all 'oooo shiny') and was just thinking we needed a nicer lamp in the dining room, so a billion bonus points for the hubby. It caught his eye at a garage sale, and is major score given that the lamp is signed by the artist.

Then we went to a farmer's market and sourced grass fed meat and cheese (although did not buy any as mucho expensivo aiii). After that we ended up a great local restaurant with a little bowling machine to entertain the toddler. We sipped blueberry sage iced tea, sampled appetizers and...well... the toddler screamed her head off and was generally unpleasant.

And then she peed her pants.

Eh, so it wasn't perfect, but the hubby and I had a great time.

Still took a nap today, but my energy, otherwise, was good.

Monday, June 25, 2012

The War Between High and Low Blood Pressure Continues

One of these days, I'm going to pass out. Just flat out, fall down and go boom. I'm losing my vision and balance to these blood pressure swings now, sooner or later I'm going to be sol.

Hope it doesn't happen while I'm driving.

Gulp.

So last night, I reverted back to my prescription blood pressure medication. The high bp was giving me a headache and its stubborn refusal to respond to anything else got to me.

Within a half hour it went down to 100/70. That drop didn't bother me, I just felt sweet relief.

This morning's readings were good, so I went back to the natural stuff. After several good readings, I started spiking high again. Damn it.

And I just now tanked a good 30 points. Thank goodness I was sitting down because this drop would've had me kissing the floor. The whole world tilts sideways and you can't see because your eyes go wonky. It's like a horrible earthquake mixed with tornado simulation, only inside your body.

So now I'm drinking pickle juice and fretting.

Oh hey, look at that my blood pressure is high again. Did I need the pickle juice or not? Did I hurt or help? I have NO IDEA! I think my body is going to do whatever no matter what I do to try and control things.

This makes my head hurt. Why isn't it just one or the other? How am I supposed to handle tag-teaming symptoms of high and low blood pressure?

Sunday, June 24, 2012

Now I Know

Thursday was a great day, except for the fact that I overdid it in the pool. Friday and Saturday I was in sad zombie shuffle mode with ever decreasing functionality.

By Saturday night, it became clear I had, in fact, caught the hubby's cold.

Which I kind of suspected. Being tired with increasing fatigue that erodes my ability to keep up with the basics of daily life is not normal even if I did over do it that one day. (And technically it's not so much that I over did it, it's that my body can't hack coming down with a cold and floating in a pool at the same time.)

It's a mild bug (I assume, based on the hubby's interaction with it) so I expect this will pass without too much drama.

Just to keep things interesting, however, my blood pressure is no longer controlled. Probably due to the licorice. Or being sick, I've had some zig-zags that make me think the adrenals are doing more than just making me tired. Either way, it needs attention.

I'm not stress dosing because I can sit on my ass all day today and don't have to be anywhere. I plan to do the same tomorrow. This cold should pass by then (I hope) and allow me to move on.

I am convinced that the key is going to be BHRT and if I can't stay off steroids, that won't happen.

If the asthma gets worse or the adrenal GI stuff starts up, it will change the game, but, for now, I'm trying to just hold on to the status quo.

Wish me luck, because, apparently, I don't have any.

Saturday, June 23, 2012

Postivie Effects of Alternative Medicine

Since I'm about six weeks into being a super duper alternative patient, I thought I'd list out some of its effects.

-Thicker hair. This is a biggie as most women with PCOS lose quite a bit of hair. I lost about half of mine and, by the time I finally got pregnant (after many years of infertility treatments), I had a small bald spot. That spot filled back in as the hormones of pregnancy were, essentially, a cure for the PCOS. I've managed to keep my hair since pregnancy, although it did thin out again. So I'm pleased to see thicker hair. I might go long again!

-Improved edema. I suspect most of the lower leg edema I have is due to the steroids--either the ones I've been on recently or the cumulative damage of long term steroids (15 years oral steroids before I was switched to inhaled ones). The improvement does not last much beyond a few days after an IV nutrition therapy session. But I do notice it.

-Improved blood sugar. I don't have a meter to test (anymore), but I don't get those whirling sensations if I eat some sugar like I have in the past. An example, I had a SAD (standard American diet) meal at the volunteer gig a few weeks ago and that usually makes my head feel like it's going to spin off from the sudden carb dump, but now that feeling is gone.

This is important because I have muscle problems when I take Metformin or Fortamet. If you think Type 2 Diabetes from long term steroid use is bad, try facing it down without being able to take the first line medications. That's the modern equivalent of being cursed. So I work very very hard with diet and nutrition supplements to diabetes proof myself.

So far so good. My last A1C was 5.6, fasting glucose 87, insulin 16. I'd like the A1C and insulin to be lower and, if I could stay off steroids, I bet they would be.

-Reduced muscle pain. The legacy of long term steroid use, multiple whip lash injuries, and multiple HPA axis suppressions has been muscle pain. The intensity depends on how recently I've been on steroids, with steroid withdrawal being the worst offender. My neck bothers me almost constantly with other muscles spasming inappropriately. The IV nutrition therapy pretty much obliterates the muscle pain. I can still outpace its effects in my neck with poor posture, but, if I'm ergonomic, I have about 80% improvement in the pain.

-Lightening of brown marks. From this last adrenal suppression I had brown eyelids with dark brown splotches extending into my crow's feet. I don't know if it's a leftover from the few times I've crossed the line into Cushing's territory or just the mark of long term fatigue. Either way, it lightened by about 80% with the first IV treatment.

-Kept me out of the hospital. I still can't quite believe how sick I was and how lucky I was to not end up in the hospital this past May. I am terrified of being intubated and this could have been The One (being worse than the last bad episode that did put me in the hospital). The extra magnesium the clinic added to my IVs really saved me. Not to mention how the other IV ingredients kept breaking up the congestion so it didn't sit and fester in my lungs. Really an amazing experience and I'm still processing it all. I feel like I experienced true healing for the first time in my life.

Friday, June 22, 2012

Oopsie

Thursday we went to the pool and it pulled me under with its weightless deceptions. I overdid it, despite being very aware and careful of not doing too much.

Big ol' fail at the pool.

I had a great time screwing myself up though.

Today I'm dealing with profound fatigue.

It's not bad enough to stress dose, but I think I need a day of nothing exciting to just recuperate.

I wonder if I'll get that day any time soon?

Right now, if you'll excuse me, I'm going to go lay in some a/c for a bit. At this rate I'll turn 'out resting' into an Olympic Sport!

Thursday, June 21, 2012

Sticking It

Well, knock me over with an IV needle, they got me in one stick today! I was in and out in an hour vs. the four hour marathons I've been doing.

What changed?

Possibly nothing, but, after the doctor struggled to get a vein for a good 45 minutes the other day, I was given a supplement for "hard sticks and fragile veins."

It smells like rancid dog food.

I'm supposed to chew it.

I don't chew it. I swallow it whole

You can chew it.

The product is called Cataplex.

As for the latest...

Thursday was a good day, I enjoyed myself thoroughly just being able to do all the normal daily activities around these parts. However, the toddler is not sleeping through the night and has kept us up the last two nights, ergo, today the sleep deprivation is wiping the floor with me.

This goes back to what I posted previously. My body requires perfection, it can't function on anything less. I could take to my bed like a Victorian hysteric, but that won't make the toddler sleep and that is the big conundrum--Life is not conducive to recuperation.

Still, so long as I don't catch the cold everyone has and can get a nap as well as a good night's sleep tonight, I can pull ahead of this one. I have enough in me now to do that much.

Tuesday, June 19, 2012

Acceleration

Last week after I did so poorly despite alternative medicine's "best treatment" I freaked. Things like "I'm never going to get better" were uttered.

So I contacted Dr. Alternative and begged for hormones.

Which were originally on the agenda for next month.

Today I had another office visit as a result of my begging and here's the scoop...

1. They looked at the chemistry and I may be on to something with the 'low progesterone is bad for cortisol levels' thing, but I need to be steroid free before they'll do any bio-identical hormone replacement therapy (BHRT).

For at least a week.

Which, I'm almost there.

Possible confounding factor: The hubby and the toddler are sick. If the hubby is sick, that's bad because he never gets sick. When's he's got a bug, I have about 90% odds of getting it too. So I'm all up in arms and running in circles like a chicken looking for its head over here.

2. I also need to rest more and to not tax my system so much. Sounds great, but I'm not sure how that's going to happen. I feel like I'm pretty slowed down to begin with and now I need to go even slower? Am I supposed to move in slow motion? Oh wait, that happens and it doesn't help.

My need for rest outpaces the number of hours in the day. It's insatiable. I'm not sure how I'm going to manage this, but I'll try.

Here's an anecdote that illustrates the edge my body keeps falling over: We went for a walk last night. A glorious, post-thunderstorm walk. Half way through, I heard an animal in the bushes in the same area where I was attacked by a dog while I was pregnant.

We never saw any animal, but I got all uptight, flashing back to the attack and feeling like some mean dog was going to come at me. (By the way, WHAT is with the animal theme lately?)

After that point, I kept having to stop and rest because I'd become too weak to walk continuously. That's how brittle my stress response is.

So I could take to my bed and do nothing and even that would not be enough. As I told Doctor Alternative, my body requires absolute perfection, anything less and it can't cope. This is the main problem. I can function, but nothing can go wrong and that's not real life.

I could go to bed, but if it catches on fire, I'm sol. (Don't laugh, that could happen. No, I don't smoke, you're just underestimating my karma. Don't do that lest it want to prove you wrong.)

I can't give my body what it needs. I'm not sure anything else can either.

3. Dr. Alternative increased the IV treatments to twice a week in an effort to accelerate whatever we can.

Monday, June 18, 2012

Forward Motion

Sunday went well. It started pretty crappy--I just could not get up and I had some adrenal pain. Realized I forgot to take the licorice again. So that was probably causing drama. Liberal application of caffeine helped.

The odd thing, I don't really feel like the licorice has an effect...unless I miss a dose. Then I notice it. Had all sorts of steroid withdrawal muscle pain as well.

The hubby and I got out to see a movie, a rare treat. We saw Men In Black 3, which we enjoyed, although I have to force myself not to think too hard or else the plot holes get to me. We laughed, we cried (it was quite poignant in spots) and had a good time.

We tried to eat out at the Mediterranean place we like, but they couldn't remove tomatoes from anything. While I hope Doctor Alternative is right and it's just the treatment and not an allergy, the fact my nose swells shut with tomato consumption makes me cautious.

So we went home and I made my own damn Fattoush salad (without the glutinous pita or the nasal blocking tomatoes). Don't have any pictures of it, but it was delicious. Just wish I could find organic parsley.

Then I started a new story. Despite the threats in my last post, I had not intended to, but the story started flashing through my head in technicolor which means I have to write it NOW or lose it. It's an idea I've had on my to-do list for a while, so my sub-conscious must've been gnawing on it.

I think I wrote 2000 words in 30 minutes. It was a crazy writing session complete with a cranky toddler, who I refused to let distract me, and I LOVE what I have down. It will need editing and fleshing out, but the premise is really unique and marketable. I'm excited.

To close out the day, we went for a walk. It was a tough one, but I still enjoyed it.

Here's to not forgetting the licorice anytime soon!

Sunday, June 17, 2012

Weekend Report

Saturday went better than expected. I managed a (slow) walk in the heat of the day, which was no small feat given that it's August in June around these parts. I'm having some issues with lack of appetite that concern me, at it's often a bad sign, and there's still some limb weakness as well, but, overall, the day was good.

Still steroid free.

When I stop falling asleep in the afternoon, I'll be convinced the worst is over. That almost happened today, but then I zonked out against my will. Don't worry, the toddler did a cannonball into my stomach and woke me up.

The writing has been hard again. I had three stories, all pretty much at the mid-point and I had to drop everything in May as I was too sick to work. Coming back to the murky middle of three stories has sucked.

One I worked on for a while, got irritated and called it done. About the best I can say is the story structure is in place (i.e. beginning, middle, end), but it will need a lot of editing and plot hole fixing. About 60% done.

The second, I think is going better. I just finished condensing the story elements and now just need to finish the end. It will still require edits, but the more cosmetic ones, not heavy structural edits. It's more like 80% done.

The third should be easy peasy. But no, it's not. It's been giving me fits. That one is like -500% not done. And it's pissing me off because it's a good story that shouldn't be that hard to finish.

On the up side, I have multiple five star reviews on a short I released before I got sick. From people I don't know. (This is kind of remarkable because it's more common to get either no reviews or bad ones than anyone saying anything nice.) People really like that story and let me just take a moment to say 'neener-neener' to the anthology that passed on it.

Is it selling any books? No, of course not, that would be too easy. But any time I don't think I can write, I go back and look at all those five star reviews from complete strangers who have no obligation to say the nice things they are saying.

And then I go beat my head against the three stories in process some more. If it stays this hard, I'll be scrapping them all and just start something completely new. It's not like I don't have ideas.

Saturday, June 16, 2012

Insulin Resistance and Popular Diet Plans

I've been perusing various popular approaches to health and weight loss and have been struck by how little attention is paid to insulin resistance.

Dr. Fuhrman, for example, is all over PBS and has a vegan approach that involves veggie/fruit smoothies. He sweetens them with Medjool dates. I actually bought some dates because everyone seemed to be excited about them. Then I read the label and my jaw dropped to the floor. 29 grams of carbohydrate per serving. They might as well tell me to drop a Snickers bar in the blender and just add in some flax seed to make it healthier and I would do better!

So I said to my husband, "Don't eat more than two of these, they are pure sugar." (In fact, I had a hard time finishing one, they are sweeter than candy.)

My husband said, "I just had seven. Is that bad?"

Short answer, yes!

Now, we can go back and forth about how the fiber in the fruit blunts the insulin spike of consumption, but the reality is, anyone with severe insulin resistance who eats that much sugar, even if it's from 'healthy' fruit, is going to gain weight and travel further down the pre-diabetes highway to diabetes. Which is why I find these popular doctor diets that ignore the nuances of insulin resistance to be irresponsible.

But I don't know how many people are like me. Maybe I'm the only one with severe insulin resistance? I couldn't follow Dr. Fuhrman's plan without significant modification. And let's face it, smoothies that combine vegetables and fruit, need a lot of sweetener to make them palatable.

I can handle a wild blueberry/spinach smoothie, but only if I add in things like Stevia, cocoa powder and cinnamon. The concoction has an unoffensive taste, which is about the most complimentary thing I can say about it. And it's still too carby for me. I make them every so often because Dr. Alternative recommends them and I agree that smoothies enhance the absorption of nutrients. But they don't help me lose weight. In fact, the opposite. They trigger my malfunctioning insulin response. I tend to eat more on smoothie days.

Dr. Fuhrman also likes to use cashews. A lot. Like in every recipe. If you are allergic to nuts, you are SOL on his eating plan. Also, I'm not such a huge fan of pureed cashews in everything I eat.

For me, this is a plan that has significant barriers to entry for the average person. I have the books and a DVD, so I have really looked at it in detail. The changes are so dynamic and the equipment you need to do it is so expensive, well, I'm amazed he's built an audience at all.

If I wasn't insulin resistant, I would probably have a strong tendency toward 'Furhmanization', but that's just me. No one else I know would do it--considering I can't even get the people in my life to go to a whole foods demo, I fail to see where these legions of fans are coming from. Where I live, everyone still thinks McDonald's is a food group.

Then we have Dr. Mercola's diet which is very similar to Dr. Furhman's, but entry is phased. I like phases. I think gradual transitions are really effective, but his are too long and confusing. Plus, anyone with insulin resistance needs to start at the most restrictive phase three, the earlier phases just waste time. Mercola is also into juicing and making smoothies, which, again, is quite expensive.

So Drs. Furhman and Mercola have diets that only people with money can follow. And only if you have natural ascetic leanings (most of us don't) and aren't insulin resistant (which most of us are).

I'm surprised these guys don't hold juicer giveaways as a marketing ploy. Especially Dr. Mercola, who has the distinction of being one of the spamiest physicians I've ever seen online. He wants me to sign up every thirty seconds and pay for access to this and that. His website makes me feel like I'm in a Medical Las Vegas.

Okay, so I've ripped apart the diets, but how do you know if you are insulin resistant? Here's my rule-of-thumb: If you have done Weight Watchers (most of us have at one time or another) and did it perfectly (i.e. you killed yourself trying to lose weight) with little to no results, you are insulin resistant. You can pay to have the blood work done, but inability to lose weight despite serious effort is pretty much text book. If you don't cut the flour and sugar and severely limit fruit, you will never lose weight.

A lot of money and a blender won't change that.

Friday, June 15, 2012

Too Sick to Sleep

For anyone who ever thought I blog daily because I have so much free time because I have no life (or health or whatever)...FYI I've been blogging in one form or another since the early 2000s. Sometimes twice a day. Those days I had a full time day job and a part time night job. (Those days, if I'd known then what I know now about making money online, I could've paid off my mortgage --I used to have that much traffic. Sigh.)

I think I just have a diary personality. But I like an audience. Which is probably weird. I don't like to write to myself.

So I'm actually not blogging all that often compared to what I used to do. These days I'm either too tired or too busy to blog. Today, I was too tired to blog.

Except now I'm too sick to sleep. So here I am blogging.

Yep. The adrenals are like ol' faithful. I can always rely on them to have a hissy if I act like the adrenaline junkie I am and *gasp* go for a daring walk around the neighborhood.

So GI nastiness galore for me.

I thought the day had ended well considering I didn't even feel like I wanted to be alive until noon or so. After that it went into an upswing, culminating in a walk. I was excited because I had good energy and strength for the walk, but then things promptly fell apart.

The alternative doc wants to get my system "self sufficient" again. To which I say, Hell Yeah. Only I don't think my body got the memo. It just can't seem to handle anything.

By the way, no steroids today. Just trying to power through. Sooner or later my body has to realize Defcon 5 is overkill for a walk around the neighborhood.

Thursday, June 14, 2012

On the Danger of Squirrels

After Tuesday's IV infusion (Alpha Lipoic Acid, something-something-choline and L-glutathiane) I had a very full day. From 8am to 1pm, I was dealing with my follow-up with Dr. Alternative with several hours of allowing various medical professionals to play 'find the vein' on my arms. Seriously the whole thing should've taken two hours tops, but my veins manage to drag it out to four, plus travel time.

But I felt good enough that I forced the family to go out for a walk at the local park. We saw two deer, watched them poop, discussed whether one of the ducks was transgendered or not and ran into an overly friendly squirrel.

My relative, who just moved out but came back for a home-cooked meal, went into 'it's an attack rat, and it's going to eaaaaaaat meeeeee' mode. So they ran off, screaming, leaving me and the toddler to calmly keep walking.

Look, I've been in the middle of various rain forests. Almost put my hand right into the coil of a sleeping baby pit viper once. Mist-netted for bats and held them in my hands--without any ER nearby to save me from rabies. I'm not going to scream over a damn squirrel.

(Of course, standing on a fire ant hill with ants swarming my feet and biting me? I totally sing (and dance) the 'get it off me' hokey-pokey at the top of my lungs.)

(When I say swarm, think Hitchcock's The Birds.)

(Not exactly on the same level as a rogue squirrel. FYI.)

So the toddler and I were walking and I was saying soothing things, trying to keep her calm as she'd picked up on everyone's fear. By everyone, I mean my relative who was still freaking out a half mile down the trail. My husband was laughing.

Then, my husband said, "Watch out, it's coming back."

Which triggered the Primal Momma Bear in me. My stomach lurched with the fight or flight response. I was ready to kill something with my bare hands, anything to protect my baby.

I turned around to see the squirrel twenty feet away. If it was coming for us, it was at the speed of a drunk, one-legged pirate who'd misplaced his peg leg.

My husband was being funny.

I mean, my dearly departed husband, because I stabbed him to death with my angry glare after that trick.

Not funny.

So not funny.

It was too late for me to do anything about the attempt to mount a stress response and it ended badly. I can't handle that kind of bullshit. I immediately had generalized back and stomach pain, fatigue, shortness of breath and rumblings of GI trouble.

Damn it.

This all meant I needed to take steroids.

But I didn't want to.

It was only GI rumblings.

Except I didn't want to make things worse either.

Weakness. Shortness of breath. Back and stomach pain.

So I compromised and took 2.5mg which seemed to be a middle road between taking 5mg and taking nothing. Luckily, the IV picked up any slack, buoying me up.

Wednesday started well, but ended with a 10mg stress dose as I hit a wall of fatigue, weakness, flank, stomach and back pain and GI symptoms. It was either take steroids or ruin my parent's 60th birthday party, which I had planned long before I caught bronchitis. Back when I thought I had a shot at normal.

BB (before bronchitis) a concert seemed like a great way to ring in 60.

But there was a lot of smoking and walking. Not so much an issue when I bought the tickets, but today's body can't hack it. I had to ask for a ride to my car like a nursing home resident.

I don't know what to do. I'm shocked that this has gone so poorly. I would never have thought I would need any steroids. I truly thought I was on the way up. I was feeling good and then bam! Hit the wall.

The only comfort I can take is at least it's not the worst adrenal stuff I've had. It could turn around.

Wednesday, June 13, 2012

Alternative Medicine Check-Up

Saw the altnernative doc. They think I look much better, which I guess is true, since I'm no longer dying of bronchitis. I am more tentative. I've been in this place before, feeling like the worst is behind me only to realize that the 'new normal' comes with limitations. I'm afraid to be optimistic because that just gets me burned.

Their plan is 6 to 8 months of IV nutrition therapy and also bioidentical hormone replacement therapy.

My plan is to sell a kidney to pay for all of that because this is getting seriously expensive. I wish the clinic had been more forthright about costs, because I was told it was $50 an IV session and it's not even close.

Waaaaay more money.

Add in the herbs and shit?

Even more money.

It's hard not to feel a little hoodwinked when they say one thing and then steal your wallet.

If you see the money fairy, send her my way, okay? Meanwhile I'll be writing as fast as I can (which is still slow as I'm a slow writer, totally the wrong speed for the output I need to achieve asap).

If I can get another release out this month, I'll be happy.

On the food allergy front, Dr. Alternative says it should be transient, a side effect of the IV therapy and its impact on my body. I hope that's true as I had some salsa the other night and my nose swelled shut. Chocolate, on the other hand, has been better, which gives me hope.

My big question, which remains unanswered by either. Dr. Google or Dr. Alternative is, if I have low progesterone (which I do) and progesterone is a precursor to cortisol production, how does that limit production capacity of cortisol? Or not? What fail-safes are built into the system and what impact does that have on health?

I've actually been researching this quite a bit and can't find anything. Apparently no one else in the webiverse has ever had this question. Sometimes I've stared at biochemistry charts hoping to intuit something, but, while I love Biochemistry, I never took more than the basic class in college, so it's beyond me.

Or maybe I just haven't found the right chart yet. Cue more googling and chart staring.

Dr. Alternative says it was a good question, but had no answer ready other than to move up the bioidentical hormone piece to sometime next month vs. waiting six months--which I was happy about because I think this is all connected. I don't know if it comes through on this blog, but it is clear to me that my whole body is shutting down. Nothing is working right and I think the answer lies in getting all my hormones balanced, not just cortisol.

I've been reading a lot about hormones and anti-aging (as this is the only area of medicine that seems dedicated to getting hormones right) and want to share a quote with you from a book I'm reading. T.S. Wiley is an "anthropologist focusing on evolutionary biology and environmental endocrinology in molecular medicine and genetics."

She was interviewed by Suzanne Somers (yes, from Three's Company fame) for the book Ageless. If you haven't read any of Somers' books, you are missing out because she interviews the thought leaders in alternative medicine and science. The ideas and information are very thought provoking, even if you don't agree with them.

So. The following stood out to me because it talks about hormones and the HPA axis, a topic near and dear to my heart.

T.S. Wiley says "So the pill's synthetic hormones and dosing regimen derange the original HPA axis, which is sort of a global positioning system, to tell your systems the time of day and year based upon your location to the planet. Unfortunately, whether or not the axis ever rights itself depends upon childbirth.

If you have babies after the pill, that's a start, that helps. Whether or not this axis can stay righted as you continue to reproduce depends upon lifestyle. How late you stay up, how much sugar you eat, how old you are inside.

But once the HPA axis is deranged you need a jolt, like cardiac paddles, you know, when they jump start your heart to get your hormones back in sync with the planet. You can use bioidenticals, if you use them in rhythm and use them the right way, to make peaks that feed back to the brain, and then the brain talks to the lower half.

You have to make up the part of the song that is missing."

Yeah, totally missing the melody and harmony over here. I think all I have is a slow drum beat left to my song.

The entire book is fascinating as is another book by Somers dealing with cancer, Knockout. Check them out if you have the chance. Everyone who has done so on my recommendation has been amazed.

Tuesday, June 12, 2012

Oddities and Delicacies

So, yep, the toddler has a growth inside her ear. Not sure how they are going to remove it, but the ped wasn't going to touch it. "Umm yeah, that's a growth alright. Huh, it's attached. Oh, sorry honey, did that hurt?" So we move on to ENT. I'm rather wary of the whole thing.

Of note, it's in the left ear and was quite swollen the day we first saw it (it has since shrunk). Makes ya wonder if that's the root cause of the recent band-aid addiction? She hasn't always had it as she's had regular check-ups, so it's new-ish, but I can dream that its removal will cure all that ails her, right?

Also, we still are on alien watch. You just never know when those things are going to hatch out of someone's head.

As for food. I made almond-flax blueberry pancakes. Absolutely delicious and they take 5 minutes to make. I was sorry I didn't make any for myself. The toddler ate them. This time. She's famous for eating anything once so I'm not holding my breath. But I liked them and at least I can (and will) make them for myself.

Monday was day three of no steroids. I don't want to jinx anything as I don't think I'm quite home free, but it's going better than expected. I'm starting to feel like things will actually get better as opposed to having nightmares every night that I'm dying and can't get up (for realz, nightmares, adds a whole new layer of suck to being sick).

Today is my next alternative medicine IV and my follow-up with the Integrative MD. This will be the first time I've seen them whilst also being in possession of all my mental faculties. Pray they find a vein. The hour long roto-rooter sessions are getting old.

And what else? Writing is finally falling into a groove. For a while there, every time I sat down to write, I felt like a stroke victim. The words would not come, I was just blank and empty. Probably still recovering. I had to walk away from one story for a while and focus on something that finally got me going again. I hope to finish the almost-final draft this week.

Sales sucked in May. June is looking better, but never count your book sales before they're made.

Here's to a better week than all of last month and to finally maybe turning the damn corner.

Monday, June 11, 2012

Progeny

Sunday was a pretty good day with some minor hiccups. Went to church, promptly fatigued and came home where I rested for a few hours. We didn't even make the service.

We did make it to the swimming pool. I tried to be very careful about not doing too much, as that's a trigger, but dug myself into a little hole anyway. I rested on the blanket for about an hour while the hubby and toddler swam and that seemed to do the trick.

Then before bed, limb heaviness and that slow stumbling fatigue gait came for a visit.

I hope today will be better.

Because I need to have my wits about me.

We need to get the toddler to the doctor today.

There is a growth in her ear. I think it may just be a skin tag, but it also looks like it's extending back into the ear canal. It's attached. Anchored in there, hunched down tight.

We found it by chance as, apparently, it wasn't/isn't bothering her.

But it's bothering us. Quite a bit and it needs to be looked at. Preferably before the aliens hatch in her brain.

Of course, if it is a skin tag...then she's got my messed up metabolism. Which I kind of figured. I also think she's wheat sensitive as it bloats her up pretty well. I'd like to feed her paleo food, but she ain't having it.

For having a mom whose main food group is lettuce these days and who wonders when she'll be able to afford grass-fed beef (if ever), the toddler sure is a carb junkie. You would think we keep Doritos and Milk Duds in stock here, which...I would have to die first.

You name it, I've tried it. She did eat some blueberry 'ice cream' with added spinach--pictured on the left-- you would totally eat that, right?

However, since our blender is 20 years old, it didn't puree everything (despite the half hour I gave it to gnaw on things) and she found an intact spinach leaf in her bowl. After which, she wouldn't touch it even if you gave her a ten foot pole made out of candy.

Any way. Parenting. It's not for the faint of heart. Or those who don't own a Vitamix.

If there's any breaking news of alien invasion...it came from my kid's ear. Prepare yourself.

Sunday, June 10, 2012

Feeling Fine

Saturday I sent the following text to my hubby:

"Asthma is not controlled, peak flow dropped, lots of congestion and I stopped steroids this morning. Otherwise, everything is fine."

Oh hey, that's the solution to all my troubles! I just need a new definition of fine!

And then I asked him to bring home a Coke Zero from the gas station.

Because when you're feeling so damn fine, you need to drink something bad for you. Just in case it can make you feel 'finer'.

I've had a social conundrum come up. Smoking is the theme.

First there was the neighbor's birthday party where the entire family smoked like chimneys. I was probably the only non-smoker and asthmatic. I quickly bowed out of that one with an awkward 'oh hey, I have asthma and I can't breathe this air unless I want an ER visit' explanation to the rather shocked hostess. I spent the next 4-5 hours fighting an acute asthma attack from just passing exposure. My lungs were pretty sensitive that time as I was sick with the bug o' doom.

Then there was another birthday party, the magician one. Well, there were a few guests who felt that since, we were outside and on a patio, they could light up. I left before I killed them with my death glare. Thankfully, that party was more open air and the exposure didn't cause any problems for me.

Now I have an invitation to a 'Mom's night out' party and it's got a fun theme. I want to go, but I'm afraid of the smoking. Which means I have to call the hostess and either:

A) Lie about why I can't go and not go. At least I'll have my dignity with this one. But it doesn't really make me friends because I never go to anything!

B) Explain how I'm this hypochondriac nut job (as I think they see me) and they need to worry about my health and possibly confront some guests about not smoking, which policing party guests is the reason everyone opens their homes, right?

C) Say nothing, go to the party and leave abruptly when the smoking starts which makes me look like I'm socially maladjusted. "She seemed nice, but then she ran out of here like something was on fire. I don't know what happened? Do we smell or something?"

D) The party is on my actual birthday and I probably can't/shouldn't go anyway (see option A). Because, you know, birthday cake obligations. Isn't it a misdemeanor to mess with the birthday cake schedule?

So what option would you go with?

Saturday, June 9, 2012

Different Patient Same Story

Cushing's with Moxie made this video and posted it on their blog.

You'll laugh if you have an endocrine issue and have run into the medical mentality of 'all patients need are some anti-depressants.'

I've actually had versions of the conversation in this video with various endocrinologists. Which is probably why I was giggling all the way through.

Friday, June 8, 2012

TGIF

A few quick pictures.

First up. This is what 'graduation from physical therapy' looks like. Lots of band-aids. Mostly to protect wounds from additional falls. All on the left, although she's got bruises on the right. She's consistent in telling me it's her hip giving out.


After I took that pic, she removed the band aids (not my preference as she falls enough I like their protection for healing scrapes and wounds) and then messed up her big toe. This is my attempt to stanch the rather profuse bleeding.


Then I made almond-flax 'toast'. Texture is just like bread, flavor is not. It's not bad different, just not bread. It will grow on me--hell, this is nothing compared to greens powder.




I made an egg mcmuffin with my almond-flax toast. It was yummy. Not my best pic, but I was very hungry.



Thursday, June 7, 2012

Getting There

I'm down to 2.5 mg. It just seemed like I needed to taper a bit faster. My body shifted gears to feeling like I had too much steroid rather quickly.

I never know if I'm right until it's done, but I'm about 95% accurate when I change the dose.

Of course, tapering makes me tired, but not tapering was not working either.

I've been sleeping a lot.

Dreaming of exercise.

Sometimes I try to work. I have several stories I'd like to finish, but my brain is still not quite synapsing normally due to the fatigue. It takes a super human effort for me to write even 500 words that are worthy of publication.

I think this time next week, I should feel like I'm past the worst of it. But I could be wrong.

Meanwhile, I'm sucking down my first Coke Zero in a month to see if it'll help crank me up. So far, it's not working.

The toddler had a lovely play date with a bunch of other kids. Perfect behavior. It was nice to see because I think every parent worries that one bad interaction means big problems. I know she's a good kid. I know we get a lot of the big things right as parents, but there has been such conflict with the neighborhood kids. But I don't think their parents are as attentive as they could be to their kids' social skills.

I don't like our neighborhood anymore. The housing market crash has changed the demographics quite a bit. Ideally we would move to another school district. One where parents pay more attention to their kids than their cigarettes. But I'm not sure that will happen.

You know, smoking has been such an issue--I think we're the only non-smoking parents on our street--that I want to find an asthma commune. I'm tired of having to awkwardly bow out of social gatherings because I can't handle the smoke.

Also, I am starting to think there really is a correlation between smoking and parenting. I have not found it to be a positive one.

I'm sure there are great parents out there who smoke, but I'm not living next to any of them.

Tuesday, June 5, 2012

My First Big Fail

I tapered to 5mg yesterday and it went okay, up until I went for a walk. After that I was a limp noodle on the couch, unable to stay awake.

For over two years, I have somehow managed to meet every parenting obligation and responsibility. Whether I felt like it or not.

But yesterday? I slept through the toddler screaming.

I couldn't stay awake and I couldn't get up when I needed to. I knew I should get up and check on the toddler but I couldn't wake up. I've always been afraid of this. Always been careful not to let myself lie down when I'm solely responsible for the toddler, but I couldn't control it last night.

Everyone is okay. Thank God. She got sent home for being physical with her friend--a behavioral issue that has recently cropped up. Yeah, great, we spend years sitting on our hands and not spanking only to have her become the neighborhood bully.

Of course there are mitigating circumstances. She's outpaced socially and one girl has turned out to be big on social exclusion, targeting my kid (the youngest), so the toddler falls back on trying to physically put people where she wants them. Since she's two full clicks over the growth curve and her peers are two full clicks below, she can actually pick them up like dolls. She's like Andre the Giant's toddler cousin.

Surprisingly (and I know, you'll be shocked to hear htis) they don't like being 'toddler-handled' and cat fights ensue.

With lots of screaming.

Which I always hear before it hits critical mass and intervene. (I am the only parent who bothers to show up before it's gone too far. Ironically this was a big part of the bitchy rant I deleted yesterday. I'm the only one who gives a shit, which is lucky for their kids since mine has finally figured out how to throw around her weight, literally.)

But I was asleep yesterday. Too exhausted to even hear my girl when she needed me. And I guess our other house guest, who usually keeps an eye on everything, decided to hide in their bat cave in the basement instead. So the back up failed.

All this drama because of a mile long walk. I think there are 90-year-olds who can walk three.

Sometimes my life seems unlivable with the health I have. Yesterday was one of those times.

I feel awful. For my girl. For the other girl. Me and my stupid stupid health.

Monday, June 4, 2012

Tireder with Extra Bitchiness

Sunday was not a rousing success, but, as is so often the case, you get one good day followed by a not so good day. So really it's all normal, right?

The bitchy part I wrote originally has been deleted. Let's all imagine sunshine and rainbows now! Your choice if it's after the apocalypse that destroys all the people you can't stand or after the aliens come and give us the key to world peace and leave us all singing kum-by-ya (or however the hell you spell it) in a round.

Sunday, June 3, 2012

Tapering and More Food

I tapered yesterday because today is going to be a bit busy and I wanted to be through the worst of it. Went down to 7.5mg of hydrocortisone. It was okay. I had some issued with weakness and fatigue and lack of appetite, but it passed. I was able to go for a walk and did a slooooow elliptical workout for about 20 agonizing minutes.

In my new office.

Yes. New. Office. Mine.

See, house guest 2 left and, since I do produce income with writing, I feel justified taking a room over for myself. And I put our ancient elliptical in here with me so I can combine writing and exercise (assuming I have the energy for it) because sitting is so damn bad for you.

The toddler's new playroom is in the basement. Where I'll probably end up writing since it's cooler down there. I want to be cheap and not run the a/c during the day this summer. (We'll see how long I can suck the heat up.)

Here are some food pics. I'm going through a food phase. Are you shocked to hear that?

Dinner last night was a huge indulgence. One of my favorite meals. Steak. Salad. Broccoli and fresh berries.

The salad was an apple-pecan-bleu cheese medley with a homemade balsamic dressing.



A few days ago, the strawberries looked so luscious I decided to make love to them with chocolate.


And...here's a bit of a food flop. Gluten-free high protein gnocchi. They were yummy, but the first batch disintegrated in the water. I baked the rest and that was our lunch.


Now for those keeping track of my GERD (which I hope not because that's probably weird), tomatoes are a problem for me. I tried it without Nexium, but I got slammed with stomach acid and had to take some before acid started squirting out of my mouth every time I talked. Gah. What an awful feeling. Dislike!

Saturday, June 2, 2012

Magic Show

My head is stuffed with tidbits on Corporate Epistemology.

Don't ask or you'll never be able to shut me up.

Because I have way too many thoughts now about the epistemology of medicine.

In theory today is my last day at 10mg.

The asthma has been acting up, retracting all the skin on my chest until I can't 'pinch an inch' let alone even move the skin. I've been using the albuterol inhaler.

Otherwise, things are fine. Big birthday party for friend's kids today featuring a semi-famous magician whose been on TV, on shows you've heard of. Amazingly, their fees for bday parties aren't too bad. I'm impressed.

I found this quote to be inspiring and I share it in the hope that it does the same for you.

I beg you, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer. -Ranier Maria Rilke

Friday, June 1, 2012

TGIF

Saw the pulmo. Same old, same old. Not quite as dismissive of the edema this time, but not wanting to prescribe meds for it yet, which is fine. I just don't want to bloat to death. Basically, I need to buy a bigger shoe for those days when my feet have swollen past their usual size 9 so I can still exercise. That will be interesting.

Energy continues to be better on 10mg. I don't really 'wake up' until it hits my system. I also still get some residual weakness/fatigue, especially at the end of the day when the steroids have worn off.

However, I baked muffins (pumpkin-cranberry), did the dishes, washed the cabinet faces, wrote an article, played badminton with my hubby and visited my house guest's new apartment.

(Why is it the house guests we like always leave and the ones we can't stand stay forever?)

That's, like, a pretty normal day for me. It was exciting.

My plan with the steroids is 5 days x 10mg, 5 days x 7.5mg, 5 days by 5mg and then alternate days until I don't need it. (More likely I'll ping pong all over the place because it won't be linear.)

I'm not sure why I'm doing so badly. I don't think I suppressed again. I used steroids, but kept the doses very low because:

1) High dose steroids don't control the asthma any better in my experience. By the time I've outpaced the five different meds I have in my arsenal, no amount of steroids is going to be a cure. In fact, the 125mg I got in the ER only lasted a few hours, it's impact had faded by the time I was discharged.

For the record, I go to the ER for the nebulizer treatments. Ones with more meds in it than I have at home, which did not happen. Actually, the ER flubbed too. I saw in my discharge papers that I supposedly got 2 neb treatments 30 minutes apart, which is a lie! I wish that had happened! ER Fail.

2)Not breathing is easier than HPA axis suppression. I have said that before and I was so not kidding. I was/am/always will be desperate to protect myself from suppression.

So 125mg solumedrol was the most I got. I metabolized it very quickly--the steroid withdrawal hit me not even 12 hours later, which I thought was strange. Usually it lasts more than 24 hours before assaulting me with full body muscle cramps.

Going back to my original theory--I didn't stress dose enough and put myself in the hole. That one is fairly plausible. I was stingy with the steroids and suspect this is the price I pay for that. Let's hope my payment plan is enough for the piper.