Thursday, December 12, 2013

Today's Diagnosis

Wow! It's been more than a month since I posted! A toast to good health and being too busy to whine about anything!

I saw the GI doc for the post ERCP followup, which, if you recall was in October and why yes, I did have to wait two months before speaking to anyone with any intelligence at all.

(My new hobby is sharing stories of our medical system with people from countries that have national health care--true national health care, not 'give us all your money for insurance that will still bankrupt you' health care. My favorite story at the moment is about my poor friend who had to go to urgent care twice and the ER before finally being 'allowed' to see a dermatologist...for a wart that took 1 minute to diagnose and treat.The medically lucky foreigners are always appalled at these stories and when I ask 'is that how it works where you live?' the answer is always no. The conclusion I draw from this is that I should probably move to another country.)

Anyway, GI doc says yes I had pancreatitis. The doc who did the procedure was an ass (my term not the GI doc's). Also, they were unprofessional and I hope I gave the GI doc enough info for some comeuppance at some point in the future.

They asked me twice "Did they really say that to you?" And I was like "YES!"

In the future the GI doc says I should get my gallbladder out to head off further Sphincter of Oddi issues. They suggested I do that at the same time I repair the hernia.

Which  hahahaha that will be a cold day in hell. Not too interested in subjecting myself to abuse from the medical industrial complex.

On the eating-everything-in-sight front...

I refused to let them weigh me at the GI appointment. There are just some things I don't want to face right now. My clothes still fit but I'm also fatter than before.

My appetite is becoming more normal and I do exercise. I hope it will even out.

On the asthma front...

Holding steady.

As for work...

Hoping lots of cool stuff will pan out. I have a good feeling about my next novel and some of the marketing initiatives I've set in motion. I'm sloooooowly building a social media platform that, in theory, will someday provide an income. Someday. Probably in the far distant future.

Friday, November 8, 2013

Opposite of Win

Here's the last three plus months of my life in a nutshell:

August: Spent a week with bad asthma, a week with a cold and asthma and started with something pancreatitis-y.

September: Something pancreatitis-y.

October: Something pancreatitis-y which finally started to get better. So naturally, we all got the stomach flu (fever, vomiting, the need to buy a new mattress, the whole nine yards). Then I ended up with an eye infection.

Yes, of course that would happen to me! What was I thinking? That I would be allowed to live my life unmolested by the best medicine has to offer? Clearly, I am insane with a head full of irrational thoughts.

So while I finished the antibiotics, both drop and oral, for my eye,  it looks like I still have an eye infection.The doctor said my only option would be the ER if the infection didn't clear up.

Awesome.

November will be month four in the never ending health circus show.

OMG.

Tuesday, November 5, 2013

Torture


So I read this article the other day about how medical personnel violated their code of ethics to torture prisoners.

It made me laugh.

Not because I like torture, but because the US Government thought they had to do something special in order to torture detainees.

Honestly, just set 'em loose in the US with a chronic medical condition. They'll be tortured plenty.


Or you could do this to them. Those doctors, nurses, hell, even the hospital janitor should all face prison time along with the cops involved.

While the guy who was repeatedly assaulted by medical personnel under the direction of law enforcement appears to be white, the racism of the south is what makes the atrocity possible. The sad reality in the US is that any brown skinned folks are automatically treated like international terrorists in Texas, New Mexico and Arizona. I just had a relative recently detained for three hours in Texas.

And let me tell you we are WHITE people. In fact, I actually glow in the dark. However, my relative had a tan and looked a little Mexican-y.

So the police detained them for three hours and threatened them repeatedly. Racism disguised as policy, which then goes on to affect everyone equally.

Anyway, save our tax dollars. Just make terrorists travel the southern states and tell them they have adrenal insufficiency. Between the two that will be torture enough.

Tuesday, October 29, 2013

Update

Sorry to leave you hanging, I got disgusted with the whole thing and had to walk away.

I've slowly been trying to explain the mess to my friends and family. At first, I just didn't have the energy to go through it all over and over, but everyone wanted to know how I was, what happened and I had to say something.

So the story came out because, once I started, I worked myself into a fine lather. I wanted to keep it to a simple 'fine, they're still not sure what the problem is, please pass the salt' but as I talked I began to get mad and it would all spill out.

My friends and family are just as horrified as I am.

This part of the story, which I didn't include in the last blog entry, especially upsets people.

Doctor: You didn't have pancreatitis.

Me: But I had stranding and a cyst on the CT scan.

Doctor: Stranding is something they say when they don't know what to say.

Me: ?

Universally when I share this part of the saga people say, 'Well, then why did you have the ERCP?'

And I reply 'Fuck if I know.'

Then they ask, 'So doctors just say whatever on CT scans and then other doctors order procedures based on that without knowing it's just BS?'

And I reply, 'Apparently.'

They always want to know 'what does your doctor say?'

All I can say is, 'I don't know. I won't see them until December unless I make a big stink and I'm out of energy for that right now. I can't face these people anymore. It's crazy town.'

I consented to the ERCP because I was told I had pancreatitis likely caused by Sphincter of Oddi dysfunction. The need to protect the pancreas from further inflammation was without question, so of course, I was on board with an ERCP.

If not for the diagnosis of pancreatitis, I would have waited and watched. I would not have rushed into the ERCP, there would've been no reason to.

To have the diagnosis rescinded after the procedure is...well, it's fucked up.  Thank God it wasn't a more serious procedure and that my complications worked themselves out at home instead of incurring the additional cost of hospitalization.

I just...WTF medicine? Why you suck so much?

I can't even say whether or not the procedure worked. I was eating better three days prior to the ERCP. The side effects of the procedure set me back for a few weeks, but I am now back to eating. Am I eating because of the ERCP or would I have gotten here on my own? It's impossible to say.

And FYI a six week deprivation diet of yogurt, pudding and kefir doesn't end well. I've been eating EVERYTHING now that I can tolerate food. I lost roughly 10-12 pounds while sick and have wasted NO time in gaining it back.

I've been eating gluten, sugar, carbs, stupid junk food, fruit, ALL OF THE FOOD, I EATS IT.  It's crazy and also bad for me. There is nothing I won't eat. NOTHING. All my efforts to abide by a low glycemic, vegetable loaded diet are useless right now. I've lost all control and it's weird.

The gluten triggered the asthma, which at least finally gave me the impetus to avoid it again. I'm working on the sugar and exercising as much as I can to offset it all.

On the gluten intolerance front, I've found the familial connection. It's not just me and I'm not the first to have issues, just the first to identify the problem as gluten.  It hits in middle age and causes allergy type reactions (i.e. prolonged sneezing fits, congestion, red runny eyes, bloating), or, in my case, triggers asthma, bloating, joint pain and flu-like fatigue.(Sometimes I have the sneezing but not always.) So there are a few of us now avoiding gluten and swapping recipes. Some of my relatives have been trying to figure this out for decades, trying all sorts of health diets to ameliorate it.















Tuesday, October 8, 2013

I'm Not Crazy, Am I?



I've been thinking about gaslighting lately.

From Wikipedia:

"Gaslighting is a form of mental abuse in which false information is presented with the intent of making a victim doubt his or her own memory, perception and sanity.[1] Instances may range simply from the denial by an abuser that previous abusive incidents ever occurred, up to the staging of bizarre events by the abuser with the intention of disorienting the victim."

And that's pretty much how I experience the US medical system.

I tried to make an appointment in the other hospital system and couldn't get anywhere. That was round two of trying and failing, although this time, I'm just trying to get into primary care not a GI clinic.

My birth control pill was obsolesced, it took a week to get a new one. I followed up twice, the pharmacist followed up twice and who knows what the OB's office was doing. I know one thing they weren't doing...their job.

I calculate that the lead up to the ERCP itself had a failure rate of 67% across three main events when it came to answering the phone, making appointments or returning phone calls.

Tell me again how amazing the United States health care system is, maybe I'll believe it this time. At the moment I'm feeling like it should be a crime to fail to make an appointment for a patient or return a call after a procedure with such a high complication rate.

As for talking to the doc who did the ERCP:

1.I never had pancreatitis. A statement that kind of threw my GI doc under the bus. I wonder how they feel about that.

2. I can take Advil. There was no reason for me to listen to the discharge instructions (even though they were all I had to go on, plus how was I supposed to know?)

3.It's just surgical gas pain that is:

-point specific
-worse with food
-relieved somewhat by position
-and lasts for days (and counting).

Uh-huh. Okay. Steps slowly away from the crazy doctor. Their weird gas pain bias will come back to bite them on the ass. I hope it is someday soon.

I don't know how to stop the madness other than to refuse to have surgery for the hernia. I can't face this again in the near future. It's too much.



Saturday, October 5, 2013

The List





That pic is pretty much how my week has gone. Ha.

I seem to be sick now. With like a cold or something.

I have a lot to say. At least three blog posts planned out in my head.

But it's not going to come out.

So, a list.

1.Mental impairment from anesthesia leads to...shopping. I don't know if anyone remembers my 'I'm so miserable, let's buy things for a short retail high' tendency.  Anesthesia makes it worse. This time around I bought:

--Books for my kiddo because...public schools do not challenge my kid academically. There's some social benefit and being asked to write and draw help with her fine motor stuff, but that's it.  She's reading at a 2nd grade level and there's no differentiation for her, which is a shame because my kiddo is not the most motivated reader I've met. She needs an external push, but won't accept it from her parents.

On the flip side, I don't want to do stuff at home that pushes her even further ahead of the curriculum. I don't want to completely erode any ability for her to find school interesting/challenging. So I've been focusing on science and cultural fiction, things that broaden or expose rather than instruct. Some biographies of people like Thomas Edison that will lead up to a family field trip and books that can tie into art projects. (Her art teacher kind of sucks and she only gets art once a week.)

So we recently read The Dead Family Diaz which is a Day of the Dead book (beautiful illustrations, okay storyline). Today, we made multimedia sugar skulls to tie-in to the book. My kiddo adored this project. I would share pics but the jpgs won't rotate on this pc for some reason. Maybe some other time.

Not a bad use of money. We'll keep what we made and use them as Halloween decorations every year. However, we'll get to the amount I spent on craft supplies in a minute.

--Then I bought Christmas presents. A useful expenditure, if a little early. Things were on sale and I was high on anesthesia. I think I bought this stuff the day after the ERCP. Or maybe the books were first. I can't remember.

--After that I went to the craft store and this is where my lack of mental organization becomes apparent. All the other shopping was online. Actually going to a store had me wandering in circles just throwing stuff in my cart. I had a really tough time structuring what I was going to do.

Suffice it to say, I spent a lot of money on stickers, feathers, googly eyes and jewels. I believe we now have life time supply of these things. We own ALL the stickers! None for you! Sucka!

Someone please remind me to give my husband my wallet the next time I have anesthesia. I will forget.

2. As a result of my complaint to the patient ombudsman, I did hear from the doctor. It was all kind of moot and after the fact. And the doc has a strong bias in my opinion. My sense is the only pain they believe in is gas pain. There is no other pain in the world and gas pain is not a problem. I have more to say about it. It was a weird conversation. I am more confused than ever.

3.I ate food yesterday. Not so much today. I tried to sleep on my right side and I hurt myself. Things have flared up.

4. I found this pic in my computer. It's from...last year? Two years ago? Oh, I see it now in the file name, 2011. I thought I was hideously fat then, which is why I never shared the pic. Ha. The old me should see the new me!  I'll always be a big girl. I'm not tiny, but I was in good shape then and I wasn't satisfied. It seems I can only see myself in hindsight.


5. In the midst of the ERCP, I recklessly set up a last minute mult-author promotion dealio. It went amazingly well. Books were selling like hotcakes. It was very successful. Finally. Amazon glitched my last book to death, so it was nice to have a win. Especially in a week when so much other stuff sucked.

Those other authors I mentioned a while back did end up hitting the USA and NY Times lists. I came up with the idea, worked on the initial logistics and handed it off to them because I didn't have any books that fit the concept. No one thanked me. Not one author felt I had done anything material.

I've been doing a lot of re-evaluation as a result...of who is a 'friend' and who is a 'user.' Sadly, it has become apparent that I'm surrounded by users. In general, I'm a one-for-all, all-for-one kind of person and it seems I'm the only one.

Also people are lazy. OMG. LAZY. With no attention to detail. This created a lot of extra work for me. If the promo I ran had not benefited me, I would not have done it. Like herding ungrateful cats on crack.

Friday, October 4, 2013

Freaky Friday

I still have pain but I'm no longer counting down to the next dose of Tylenol. Which is progress.

I have the steroid munchies from the stress dose, but I can't eat anything. That's been interesting.

The asthma, which I haven't mentioned until now, is finally calming down. It flared quite a bit after the ERCP. Because I was so damn loopy from anesthesia and preoccupied with pain and nausea, I did jack to take care of it. I took my regular inhaler and that was it. I wasn't able to get it together enough to do more than that, which is kind of disturbing.

I sent my nastygram to the ombudsman. I don't expect anything will happen, but I'm meeting my goal of being more vocal about medical asshattery.

And I've decided I really need to switch medical systems. Twice now, I've had GI procedures at this place and been sent home with untreated pain.

The first time was the adrenal crisis. I remember the nurse saying, "I've never seen anyone in so much pain after an ultrasound."

And they sent me home anyway.

They run a lousy unit and they probably don't even know it because they aren't tracking anything unless the patient goes directly to the hospital from the procedure. No, they dump patients out the door and have no idea if their care caused any problems or not.

I'll never see that doctor again (it wasn't my doc who did the procedure) and unless they get curious enough to look at my file, will they ever know I had problems? I don't think so. So they continue on thinking they're fine, that what they're doing is fine and it's not.

If I can't trust them to listen to me or to properly take a phone call, then how can I let them touch me again?

I can't.

However, saying I need to switch and actually doing it are two different things. Plus, watch my insurance change to one system and one system only now that I've said I'm switching.


Thursday, October 3, 2013

Cranky

Okay, so let's set the record straight, yesterday I was being overly optimistic.

I was also still higher than a kite.

Which is why it took me until 1pm to finally call the doctor and ask for some pain medication.

True to form, no one called me back.

So then I called the after hours number and spoke to a nurse who showed no record of my phone call earlier in the day. Meaning, the nurse who took my call did nothing with it. I ended up talking to some useless GI doc on call. Naturally, they couldn't do jack for me because they hadn't seen me.

We started to have the 'you should go to the ER' conversation and then the line went dead.

It's almost funny at this point. Only it hurts to laugh. Or breathe. My stomach is majorly distended because, I believe, my digestion has shut down again.

(And no, it's not gas pain from the ERCP, it's brand new distension.)

All I want is whatever the closest equivalent is to Motrin when you can't take Advil after surgery. Tylenol is not enough.

I don't know that I have pancreatitis with a capitol P or anything. Clearly things are aggravated. Yes, I am worse off than I was going into the ERCP, but I doubt it's serious. At least that's my impression based on my pancreatitis experience to date. I wouldn't go to the ER for it, not unless I started vomiting or something.

It would just be a lot more livable if I could control the pain better. My go-tos with all this have been Advil alternated with Tylenol and I've lost my mainstay, the Advil, due to the ERCP.

That being said, I'm not sure I would take a narcotic. I hate being loopy. Hate it. Aside from lacking the palate for booze, this is the other main reason I never drank, I don't like being out of it. Just look at this blog, which is pretty much dedicated to whining about how much I hate loopiness.

If there's no non narcotic option, then I'll suck it up, but I deserve the chance to have that conversation and not be blown off.

So since I'm cranky and all that, I finally called the Patient Ombudsman. That won't stop me from being in pain, but maybe I can spread the wealth. If GI people would have bothered to listen to me* or return calls, I wouldn't have to deal with this.

*Honestly, forget me saying "I'm in pain" and just go off my behavior. What patient have they seen wake up from general anesthesia and immediately lurch into a sitting forward posture while holding the right side of their stomach even though they are barely conscious? If you're a GI doc, how do you miss that? I saw every other patient in that room, they were all resting quietly, awake and alert. Nobody was rocking back and forth, moaning in pain except me. How did I not register as having a different experience?

May karma bequeath them with the same medical care I've received.

In spades.

And let's hope I see some relief today. This nightmare has to end sometime, right?

Wednesday, October 2, 2013

POST ERCP

I'm recovering from the ERCP. I've been scarce of late, not because I felt great--I've actually continued to have issues with the pancreatitis--but rather because I was trying to work ahead on my books in case I ended up in the hospital after the ERCP. I literally holed up in my office and wrote, pausing only to do what was absolutely necessary for my family.

So I had the ERCP yesterday.I think if I get through today I'm in the clear for ERCP induced pancreatitis. I've been really careful, not eating in order to let my system rest. I finally had some yogurt just now. So far, so good.

You should have seen my face though when the doctor told me every second or third patient ends up with pancreatitis from the ERCP. I didn't realize the odds were that bad. Actually, they're not bad, they are horrible. Really horrible. Wow.

I wanted to leave. I'd actually started to feel a bit better a few days before the procedure.I was even able to lay on my back and eat food, although I still couldn't rest on my right side. It seemed stupid to flirt with such a big step backwards. I wanted to go home.

Instead I stuffed some suppositories up my you-know-what that the doc said had been shown to reduce the risk of pancreatitis.

Then we marched off to anesthesia. They gave me a stress dose which was great. I'm glad we did it. It seemed to give me extra umph. It wasn't neutral, it did have a positive effect.

However, when I woke in recovery I was already holding my stomach and in immediate excruciating pain. They said it was the gas, but I know gas pain (hey, yo, not my first rodeo, guys) and that was not it. I had some relief by sitting up and leaning forward, which is, you know, pancreatitis.

Or my special brand of 'if you touch my pancreas, it will make me pay' pain. Thanks to various medical stuff leading up to the ERCP, I've learned my pancreas does not like to be disturbed. Touch it and I will cry. Like a baby. In fact, I was fighting tears already at that point.

Since they were unimpressed with my reports of pain, I begged to go home where I thought misery would be more comfortable. (It wasn't.) 

So I had pain, nausea and a migraine-like headache for a very loooong time after the ERCP. Because they did cauterize a sphincter, I can't/couldn't take anything really effective for pain either.

Anyway, the results of the ERCP...

Pancreas "drains beautifully"

They cauterized the biliary duct.

And I am so confused.

Can biliary duct problems cause pancreatitis? Google says something along those lines,but there's no definitive internet knowledge. I've looked at the anatomy (admittedly while still high on anesthesia) and can't figure out how that would work.

So did we fix a stand alone problem or the root cause of the pancreatitis?

I have no idea.

Shouldn't I know though?

I love how they dump all this vital medical information on you when you are not mentally competent. If a patient isn't competent to drive or make any decisions for 24 hours (it says that on the discharge sheet) WHY would you think they could formulate intelligent questions or analysis of any information given to them?

I'm not even sure I remember everything that was said!

My husband was there, but they wouldn't let him back so he could hear anything! Which was the whole reason I made him stay for the whole procedure, just so he could be there for that moment when they tell you what was done and why!

WTF?

I suppose I'll learn more at my follow up appointment in...wait for it...December.

Wednesday, September 18, 2013

Energy in the Hole

I'm sloooowly recovering from the whole food poisoning thing. Pancreas seems to be doing well, too. I actually ate some ham and bean soup yesterday and had no pain afterward. So I ate it again today and just a little twinge.

(The big drawback for me re: food has been cooking for the family while I'm starving and unable to eat anything I'm serving. Every so often, I lose my mind and try things. The soup was an experiment that turned out well.)

The only thing, I'm sooooo tired. I don't understand why. Is coming back from pancreatitis a big deal?

I've been getting a lot of sleep, going to bed early even. Energy during the day is okay, but I poop out around 2-3pm and just don't seem to come back online again.

Maybe it's all the extra sugar in my diet these days. Even a 'healthy' yogurt has 20 grams of the stuff, and, if that's all you can eat, it adds up. PCOS is not good with sugar.

I don't know.

I just want to be back to normal and I'd like normal to stop being a quick rest stop between episodes of medical mayhem.

Monday, September 16, 2013

The Pissy Pancreas Goes on a Trip

Well, that was a mistake. I went with my family on our little adventure. I wanted to be there when my kiddo saw everything for the first time. Unfortunately, it was a little much for me.

The good news? It looks like we all had food poisoning or something. I was the only one to vomit, but it wasn't necessarily my pancreas gone wild, which would have been much more serious.

However, I really needed to be in bed on Sunday. I was just wiped from being sick still and my diet of Kefir and Greek Yogurt made things worse. It couldn't give me enough calories to heal from illness and hoof it all over the place. I'm hungry to the point of nausea most of the time these days.

So I had 550 calories to sight-see on. By the end of the day, I had a horrible headache. I tried a bunch of little tricks to try and ameliorate things. Some Emergen-C packets in the hopes that would help. Nope. I ate some Welch's fruit snack thingies for some quick calories thinking I had low blood sugar. Not happening. I didn't need sugar, I needed food. Real food.

Then we hit the Hard Rock where the chef graciously grilled a plain chicken breast for me. It was a risk to eat it, but, the second the protein hit my stomach, I began to feel better. My pancreas even let me eat it without any protest.

I was so excited. I'd eaten real food and it didn't hurt! But then my pancreas spent the entire 4 hour ride home cramping and clenching in my gut. So, not a win.

I'm back to Greek yogurt this morning and the headache of hunger has returned.


Saturday, September 14, 2013

Bile

And then I started vomiting bile last night. Among other GI nastiness.

I think it's my body just purging an ill-advised dinner, where my sense of starvation won over my need to not eat anything exciting. The food passed through my intestines almost whole.

I'm concerned, but not thinking this is serious. I need more data to panic.

Unfortunately, we have a family plans this weekend. Cool, exciting stuff that I really want to be there for. I'm not sure, now, that I can or should be traveling around. I don't want to subvert fun with all my bile either.

Friday, September 13, 2013

Conundrums in Weight Loss

I've lost about 5lbs as of today. I haven't been weighing myself because my stomach is HUGE and so I assumed all the sugar/carbs in my diet were making me even fatter.  I mean, I can't even cram myself into my fitted pants right now. Surely, I'm gaining weight?

Weeell, not so much as it turns out.

Apparently, I can weigh less, but be bigger than ever.

FYI that's not how weight loss is supposed to work. My body has some explaining to do.

The only reason I stepped on a scale was because I had a doctor appointment. The scale was in the waiting room where people could see the weight. It was potentially mortifying. Fortunately, I had a sensitive nurse who blocked the digital display to give me some privacy. However, that didn't keep everyone in the waiting room from trying to see, which was unsettling. Not the kind of group think you want to see in a medical setting, you know?

I pointedly looked away when someone else was weighed. Their nurse didn't bother to hide the display which I'm pretty sure hurt their karma.

The 'surgery' should be later this month. I don't think anyone is going to argue about the stress dose, which is good.

Of course, I seem pretty stable. Who knows? I might be able to do without steroids, but I think it's just better to play it safe.

The one wrinkle is my positive scratch test to fish. I don't know what they're doing that involves fish in this procedure, but all my paperwork from them said to mention any allergies to fish. So I disclosed it and we'll see what happens.

I still keep searching, hoping to find happy ERCP stories, but all I find are nightmares. I hope this is a good decision with a good outcome. I hope the people on the internet do not represent a majority, that all the shiny happy ERCP patients are too busy living their lives to talk about the procedure on the internet.

Thursday, September 12, 2013

What to Eat with Pancreatitis

Here ya go, internets, the answer to the most often asked question about surviving pancreatitis:

What the fuck can you eat?

Nothing but fat free Greek yogurt.

Which gets old real fast.

It's all up and down over here. One day I think I'm over it, the next day I'm so bad, I wonder if I need to go to the ER again. I would say it is horrible and awful, which it is, but it's still not as bad as adrenal stupidity. Although, it does hurt more and is just as frustrating.

My GI tract isn't working correctly. I have a very distended stomach at times to the point where I'm short of breath and my abdominal muscles spasm from the pressure. I often look like I'm very pregnant. It's worse if I try to eat anything interesting. Things just aren't moving. At all.

I've been googling the ERCP procedure with poor results. Most of the patients online talking about it are from 2010 or earlier and they all have had a horrific experience. The one person I found who had a good result only had 8 weeks of relief.

Did the complaining stop in 2010 because the procedure improved? Are there fewer complications now? And I keep seeing people talk about having had, like, 5 ERCPs. Am I going to have to do this over and over?




Monday, September 9, 2013

Recipe for Better

I think I'm coming through to the other side. I hope! Oh boy do I hope!

There's still pain, but it is much reduced. It's possible the swelling in my abdomen is going down as well, but that may be wishful thinking.

I'm on, like, day 7 of wearing 'soft' pants.  The idea of wearing anything without an elastic waist makes me cringe.

During the worst of it, I just kept telling myself 'no fever, no vomiting, no problem.' Sometimes I didn't believe it and worried it would be a bad move to not go to the ER.

Gah.

Anyway, my body lets me eat with minimal pain as of now...all no fat or very low fat (2% or less). I finally have some interest in working vs. huddling on the couch in a fetal position. I even think about exercise, but have no plans to actually engage in anything other than aerobic fantasies.

On the plus side, I'm all caught up on Burn Notice and discovered The Americans (omg you must watch, great show and the creator/writer is an ex-CIA agent which makes it extra awesome).

The goal going forward is a low fat, low carb diet in the hopes of holding myself together for the 'surgery' that may fix this. Not sure how that is going to work. So far, all I've come up with for menu ideas are things like chicken and veggie soup--cooled so I can scoop off the fat. Plus spinach smoothies. 2% cottage cheese and maybe some low fat lunch meat with fat free mayo, mustard and pickles.

I'll continue to juice vegetables to be sure I have lots of anti-inflammatory anti-oxidants. It definitely seems to have a positive effect when I take the time to do it (juicing is kind of a pain-in-the-ass in case you didn't know).

Beyond that, I'm a little stumped. I can probably still do taco salad with ground turkey, right? And fat free sour cream along with reduced fat cheese? Maybe?

Anyway, I'm searching for recipes today.




Saturday, September 7, 2013

Going Down?

I know nothing about pancreatitis. I don't know its pattern. It's all new to me.

On one hand, I am worse.

On the other, I kinda, sorta, have less pain.

My entire right torso is involved now, front to back with extensions into the left side. It's not pain that bothers me as much as intense, uncomfortable pressure and heaviness.  Any serious pain has been fleeting, thank goodness.

I can feel my kidney on the right now too, like the heaviness is irritating it. My stomach is distended, I walk like a pregnant woman three weeks past due. There is shortness-of breath at times.

I seem to be losing my appetite. Maybe. We'll see about that one.

I am also having a hard time functioning. I'm very weak and tired. Today, I managed an appointment, a quick grocery store stop and the purchase of a new printer. I had to sit down a lot and, if my husband hadn't been driving and helping, I don't think I could've managed any of it.

For the remainder of the day I will be resting. Tomorrow I will go nowhere and do nothing.

If I make it through the weekend, I'll call the GI doc on Monday. Otherwise it'll be ER visit #2. Gah.

What a terrible out-of-the-blue surprise.  Asthma I understand. Adrenals I get. Pancreatitis makes no sense to me. I feel dumb.




Friday, September 6, 2013

Comments, Pediatrician Checking to Make Sure I'm Not a Drunk

Looks like I missed some comments? Weird. I will respond here.

COMMENT ONE:"I am SO sorry. How awful. Are you having an ERCP? Dreaded question....will steroids be part of the procedure or are you trying without? Was it a scope before that gave you a crisis after? I'm probably recalling incorrectly. Thinking of you lots. Hang in there."

I think it's an ERCP and an EUS or whatever. It's a down the hatch procedure, no actual incision, but, of course, me being me, I need general anesthesia. The GI I was combative with under Twilight must have left really explicit notes about 'do NOT use Twilight unless you like patient kung fu'. My current GI doc (same practice) was very clear that I would not have Twilight anesthesia, no way, no how. I have been banned.

I will stress dose. Yes it was a scope with general anesthesia that gave me problems before. I am doing SO much better on the adrenal front,but I don't want to play fast and loose. The downside of a steroid dose before surgery has a duration of maybe 6 hours compared to 3 months with an adrenal crisis. It's no contest.

Plus I could probably use the anti-inflammatory boost. I am not doing very well right now and I worry about having pancreatitis from the procedure itself. If I'm even well enough to have it at all. Things are really touchy right now.

COMMENT TWO: "I'm confused by a gap in the narrative. In our practice area, the ER would advise a follow up w/ primary care physician and/or a specialist in the area of concern. The specialist would never be available in the near future, so almost all get an appointment with us (The Family Physician) the same day they call. We translate and treat and make a plan for continuing care, including consultations w/surgeons or others who might relate to an unresolved abdominal pain/problem. It sounds like there is a hole in your system. (p.s. I reviewed this post on my BTR show last night- Dr Synonymous)"

ER advised follow up with a GI doc and I am an established patient with that specialty, so the runaround I got was really strange. I think the problem was the first receptionist I spoke to was a moron. Primary did things for me when I called them. They tried to help me circumvent stupidity from GI's administration, but they didn't want to see me, they wanted me with the GI, which I think was appropriate.

Sadly, I missed an appointment because of GI's logistic stupidity. I could have seen a gastro within three days of the ER visit instead of eight if they'd had their act together. My GI told me they are trying to get an appointment for their neighbor there and they can't get them in. It's bad.

Looking at my experience with the other hospital system, it just seems like the business side of the equation is controlling work flow in strange ways, rebuffing patients to everyone's detriment. I think too, the new push to force people to see primary--not call, but actually see--is an attempt to drive up profit as well as control scarce resources. Why earn money off one appointment when you can bill for two? It doesn't matter anymore if your insurance doesn't require a referral, now the hospitals do.

Poor communication and significant administrative barriers to care are the new norm in medicine in my experience. To the point where I wonder what is the merit of a specialist if they can only see you at 4 to 6 month intervals and never when you are acutely ill. The ER ends up compensating for these scheduling issues resulting in zero continuity of care in my opinion. The doctors who know me never see me when it counts.

Essentially my pulmonologist gives me inhaler prescriptions and never provides care for acute episodes. Sure, they'll see me for the aftermath, but can't be present for the jump off the cliff, which is when I really need their expertise.

Honestly, what do I need a pulmo for?  They're never around to intervene so I can stay out of the ER and hospital. Why can't I just go through primary for the prescriptions? Why establish with a specialist when they are never available when it really matters?

Yeah, I get to see them every month after a bad episode but that doesn't help me. It doesn't materially benefit my health at all. In fact, it's bad for me. I have to walk at a time when my lungs are raw. There are smokers everywhere, which is significant trigger for me. I've actually had pulmo appointments cause asthma attacks because of these factors. Then they argue with me about the HPA axis suppression and refuse to treat it. There's no added value.

It's messed up. Which is why, when the asthma is stable, I will only go to see the pulmo twice a year instead of their preferred 4 visits a year. It's a waste of time, mine and theirs. I do just enough to keep myself an active patient and that's it.

And if any of this makes no sense, well, I'm really not doing well. As of this morning, I think (hope and pray) I'll stay out of the hospital. Last night I wasn't so sure. I've had increasing pain and started alternating Advil and Tylenol to try and get ahead of it. I'm also on an all liquid diet as well as sleeping sitting up. I hope that's enough.

The other fun thing is my kiddo looks to have impetigo. It's going around at her school. So I kept her home and took her to the doctor on Thursday. Except, stupid me, I put Neosporin on the blister cluster and it resolved over night so she looked fantastic at the ped's office. As a result, nothing much came out of the visit and I continue to use the Neosporin on the blisters in the hopes that it'll resolve without another doctor's appointment.

The ped caught me picking at the tape residue from all the labwork I did this week at the GI's office--there's always adhesive gunk that just won't come off. She asked me about it and, again, stupid me, I told them I had pancreatitis. This triggered a series of awkward questions to determine 'is this mommy a drunk and should I call CPS?'  That was fun. I didn't realize the dynamic at play either until much later, so, in the moment, I was quite naive and didn't do much of anything to reassure the ped.

Then I started to wonder, does everyone just assume I'm a lush when they find out about the pancreatitis? Yikes!

For the record, I don't drink. I have literally never been drunk. Ever. I can produce witnesses if necessary.

The two sips of beer I've had in my life have made me want to instantly puke. In fact, in college, I took my first sip and then dry heaved while begging for Sprite. (You have never seen drunk 18-year-olds move so fast to a) get out of the way b)get me a Sprite so I didn't vomit.)

I hate the taste and my stomach doesn't want the stuff.  The second sip was a total accident, I thought it was my pop can, but no, it was Bud Light or some other equally horrid swill.

My husband stopped drinking a while back and so, for the last several years, we haven't even had alcohol in the house.  My palate is changing with age and I could see enjoying wine at some point, but, given the pancreatitis and a few raging alcoholics in my family providing up close and real life examples of why alcohol is bad, I think I'll just stay dry.







Wednesday, September 4, 2013

I Just Can't Stay Away (Pancreatitis)


Saw the GI doc and I'm having surgery in a few weeks. The diagnosis we're going with is Sphincter of Oddi Dysfunction.They're going to cauterize the sphincter so it can't spasm shut anymore.

If that is what is actually causing the problem. There's really no guarantee.

I really did have pancreatitis.The CT scan showed "stranding" (aka inflammation) and a cyst on my pancreas.

However, all my blood work was normal so the ER sent me home. No high triglycerides. No elevated enzymes from the pancreas or liver. Apparently, I had the mildest case of pancreatitis in history.

Yesterday, I ate some stupid shit (because I was starving, which is the state most associated with food stupidity) and have not done my pancreas any favors.It's throbbing angrily in my gut, making my pay for my indiscretion.

Why did I do something so stupid? Because I didn't think I really had pancreatitis. I mean, you read patient stories of their experiences and they aren't out and about living their lives, they're in the hospital in a fetal position from the pain. That wasn't me, but now I know better.

So, yeah, I need to pull back on food. A lot. Back to fluids and soft, bland foods until the surgery. I need to get my pancreas in good shape before the surgery to reduce my risk of the surgery causing pancreatitis.

Still haven't heard back from the one hospital system. I have a relative in that system who is an established patient and their calls aren't returned very often either. It's funny how they don't mention that in their multi-million dollar ad campaigns.

Tuesday, September 3, 2013

Reflections on Progress

Still no news on the GI front,but that's not what I wanted to talk about today.

This morning I got up at the crack of dawn, did the dishes, dressed and fed my kiddo, packed her lunch and made her laugh by singing an impromptu song about putting a 'moose' in her hair when she asked me to style it for her.

I drove her to school and came home feeling ready to work. I've been doing this for two weeks now.

In other words, I have energy as opposed to adrenal insufficiency.

Being able to get up and go in the morning has really been about the last thing to 'come back.' It really kicked in over the summer and I'm so grateful.

For a long time I couldn't get up in the morning. It didn't matter if I wanted to or not, my body just wasn't ready to be conscious. When I did get up, I often went back to bed.

There would even be times when I was gung ho about starting my day and  feeling pretty good only to be flat on my back again just an hour after going upright. The fatigue of HPA axis suppression/adrenal insufficiency was an anchor holding me down, holding me back.

I'm so glad it's gone. For real this time.

It wasn't depression as the trolls often liked to tell me. I've read Hyperbole and a Half who just recently posted a long comic on depression. I've seen clinical depression up close and personal in my family. I've never felt or behaved like that. I've never not wanted to be better. I've never not pushed and pushed myself to rise above the fatigue. Any inability to rise to the occasion was not a sign of mental illness.

The trolls scare me because they are out there practicing medicine and they don't know the difference between mental illness and adrenal problems.

I had hoped to step off this ride by now and am unhappy to find I'm still trapped on the medical merry-go-round by other issues. Basically, the only time I've been free of medicine were the years between 0 and 15.

Being sick can kill you even when there's a cure.

Saturday, August 31, 2013

Asshole Patients Aren't Born, They Are Made by Medical Care

I finally got a hold of someone at the big GI clinic and they promptly told me I had to see a primary care physician and get a referral.

And I lost it.

I'd been calling this place for three days. They said in their message they would call back in 24 hours and they never did.

And now I had to see a primary doctor when my insurance doesn't even require a referral?

Fuck that shit. (Fair warning, I will probably swear a lot from here on out, shield your delicate sensibilities.)

I got really bitchy and super snarky.

"Gee, I hope there's nothing serious happening with my pancreas. I have active abdominal pain and a CT scan showing something on my pancreas and you want me to let that fester for the 60 days it's going to take for me to go through your primary care to get to the GI clinic. That's just awesome. Is this really the amazing world class medical care mentioned in all your commercials or is that just false advertising?"

I felt kind of bad as I went off on the lady, but I'd spent a fucking week at this point dealing with this stupidity. No one I spoke to all week had a fucking brain in their head.

Luckily, me being aggressive turned out to be a good thing because guess what? I didn't have to see a primary care doc in their system to go to the GI clinic. They were wrong and if I'd been nice, I would've been screwed by this chick and her ignorance.

I still didn't get an appointment though. I'm on some kind of urgent waiting list.

And I somehow missed a call from the other GI doctor. They didn't leave a message, but why do I have the sinking feeling the one appointment I managed to get on the books is about to be canceled?

Anyway, I've decided there's just no reward for being nice or professional. From here on out I'm unleashing my inner bitch. I will complain louder. I will throw fits. If people don't call me back, I'm going to their office to leave a message in person. I've had it. Being nasty seems to be the only thing that yields any results.

Sad but true.

Friday, August 30, 2013

Motto of Clinics Everywhere: You Can Call Us, but We'll Never Call You

Hey, it's Friday and I'm still trying to line up medical care. Can I tell you how awesome it has been to make call after call, to be sure to have my phone always on me just so I can hear the silence of no one calling me back?

I am living the dream, people!

The situation is absolutely disgusting. I should probably write some letters complaining. Would it change anything though? I don't know.

I had similar run around issues getting the adrenal stuff diagnosed and treated. Endocrinology wouldn't see me without an internal referral (my insurance doesn't require one, but the hospital likes to think they are Kaiser Permanente or something) and Primary was like 'why do you need an endo? You want a referral for what?' while the pulmonologist, who had prescribed the steroids and done this to me in the first place, was 'why are you calling me? What do I have to do with this?'

Long time readers will recall I couldn't even finagle a blood test for HPA Suppression until six months after it started. (As a reminder, cortisol at 9 am was a 6 and ACTH was less than 5 and that was with 10mg of prednisone in my bloodstream, which, supposedly, artificially propped up my cortisol level.)

Something is really wrong with medical administration. The only time I can ever get an appointment is if it's 4 to 6 months in the future. Acute or urgent anything is shit outta luck.

I did end up with one appointment next week with my current GI. That finally got squared away on Thursday.

Of course, by then, I had called the fancy schmancy 'when we cut patients, they don't even bleed' pancreas clinic.

Now they haven't called me back. I'm on day three of trying to get a hold of them.

I am feeling like I want to leave my GI doctor, but there may be no place for me to go.


Wednesday, August 28, 2013

How Medicine Kills Patients

I spoke to two nurses yesterday who all sent messages to primary care. Nothing happened.

Still never heard back from GI.

Then, this morning, got a call from Primary Care. They referred me to GI.

Ha.

Anyway, Primary said my GI doc was out of the office, which is why I never heard back (allegedly) but they sent an urgent message to GI on my behalf so someone will see me asap (theoretically). Why the receptionist on Monday couldn't tell me any of this, I don't know.

Of course, when I called GI as instructed by Primary, my doctor is in and seeing patients. They even had an opening this morning, which, naturally, I missed.

BUT the person on the phone seemed half way competent and paged the GI doctor. They actually seemed to think this pancreas thing warranted some urgency. Hallelujah.

For my part, I called the hospital and requested they fax my CT scan stuff over, which they did the second I asked.

It's still going to take me the better part of week to get any medical care.

Sad to say, I live in an area with several major medical systems too. It really shouldn't be this hard.

I did find a pancreas clinic in town that might be a good stop for me in the near future.  They do coordinated care across specialties which sounds like heaven. I wonder if they return calls when established patients call?


Tuesday, August 27, 2013

Shouting in the Void

I'm still trying to get a hold of a doctor. At this point, any MD will do.

GI never called me back.

Primary Care's call center couldn't handle my request to speak with a nurse so I could sort out anything. I asked three times to speak to a nurse in my doctor's office and they couldn't compute.

They passed me off to the general call center who sent a message to Primary Care.

And one of the biggest criticisms of nationalized healthcare is no one will be able to see a doctor.

Well, I have have insurance in a private system and I can't even get anyone on the damn phone.

It's not the first time either.

There's not much difference between me and the uninsured right now. My main source of medical care is the ER at this point.

On the upside, I've been following a liquid, soft food low fat diet which has helped. Although, I'm starving as a result. Not to mention eating too much sugar, because low fat is also high carb by default.

There's a hospital system with same day appointments. If I can't get any response from the network I've been relying on today, I'm switching.


Monday, August 26, 2013

Crazy Town Full of Surprises

So, after I gained control of the asthma, I then caught a cold. Primarily due to stress. Both our elderly dogs tried to die three days before we were due to leave town on vacation. The sickest dog, of course, fell apart on Friday, which made it tough to find medical care.

Two vets and $1500 later...we had a wait and see situation. It looked like he had cancer in his spine or he might recover the ability to walk and be fine (don't you love medicine? So specific!). Since he needed to be crate rested, we boarded him with the second vet we saw on Saturday and went on vacation with heavy hearts.

However, the process of figuring all that out, going from 'we need to put him down' to 'he might be okay' really put my heart through the wringer. We had tickets to a Broadway play the night before we had a game plan and I was sobbing in our box seats before, during and after the play.

It was a comedy.

I made my husband cry.

Fun times.

Fortunately, our yellow lab is doing better. We don't know how long we'll have him around, though. His spine problems are pretty severe and he is advanced in years, meaning we aren't going to do much more than make him comfortable at this point in his life. For now, we're just focusing on loving him and plying him with delicious treats without making him fat (which he's on prednisone, so that's kind of tricky, but we're trying).

The stress, though of getting him squared away, took its toll. A few days into our vacation, I was sick. The asthma was bad with the cold, but I pulled through on my own with just the Symbicort and Albuterol. I did flirt with needing prednisone, but, thankfully, the asthma improved.

So vacation ended and we came back home where I had a routine blood pressure follow up. Well, routine quickly went out the window as I was diagnosed with a hernia that likely will need surgery.

Oh-kay. Did not see that coming, but it does explain a lot.

Unfortunately, after the physical exam where the doc shoved my gut this way and that, I had escalating abdominal pain. By last night, I couldn't even lay down without excruciating pain. Sitting and standing were better, but still with lots of heaviness and a dull ache.

I kept trying to go to bed, but the pain was too bad I couldn't stay flat. So I went to the ER convinced I was the beginning of the next Aliens movie.

Just because nothing can ever be simple, they couldn't find any reason for my abdominal pain except maybe I had early pancreatitis and.... the CT scan shows something on my pancreas.

In case you didn't know, that's pretty bad ju-ju. You don't want things on your pancreas. Ever.

They didn't say cancer. They said I need an MRI for a closer look.  (Let's all hope they weren't just being tactful.)

And it might not even be the source of my pain anyway.

Which I still have, although my abdomen did let me lay down finally around 5am this morning.

Naturally, my GI doc is booked through October. Apparently, they either don't have emergency appointment slots or I don't warrant one. 


Saturday, August 3, 2013

A Week Later...

The asthma is mostly under control now. I put myself on bed rest the day before if finally came to heel. Day-to-day-life was just making things worse. I would have acute asthma for 7-8 hours a day, would get a short break and then it would kick back on again at night--all because I took the car to the mechanic, went grocery shopping, stopped at the bank etc... I need to do a better job of slowing down and resting more when the asthma acts up.

This was probably the most serious non-illness related asthma I've ever had. I could feel the swelling in my lungs, feel the margins narrowing.

Anyway, I can mostly breathe now. I started walking again and will build back up (again, sigh) to something tougher.

I'm still hypersensitive to smells which can trigger the asthma despite more than tripling the inhaled steroid dose I started out with.

Sleep is also a little weird and I'm tired as a result. It's better than it was, but the change in steroid dose is not without side effects.

So, as a result, this past week has mostly been sick time for me. I did some writing, but mostly just gave myself permission to take a break. I was too tired to feel bad about it.

Thursday, July 25, 2013

Loss of Control

I'm on day three of shit sleep.

Why?

I had to increase the asthma meds.

I've been fantastic on just one puff of Pulmicort twice a day for something like the last six months. Perfect asthma control. Could not have been better.

Then we hit a heat wave and the ol' windbags did not like that.

Lots of air trapping. So I switched things up and it's better, sort of. The big downside is my body acts like one puff of Symbicort twice a day is the equivalent of 80mg of prednisone.

That means, not sleeping at night, I suddenly have restless leg syndrome in my right calf and my mind races like I took a whole bottle of caffeine pills.

And while things are better, I may need to up the dose again. The asthma is still not controlled. Not only was I up last night due to steroid side effects, I was hacking like an angry seal. Yesterday I was wheezing, but I'm hoping that's just because the temperature dropped by 50 degrees.

If money ever becomes no object, I should probably live somewhere with a stable climate. These temp swings are hard on me.

Anyway, today I slapped a spacer on the inhaler to, hopefully, tone down the systemic effects I'm having. I should have done that from the beginning, but I tend to forget all these little nuances of asthma management. I have to relearn the rules every time things change.

On the adrenal side...I'm mostly fine. I get a touch of adrenal weirdness now and then. Hard exercise can still be an issue so I mostly avoid it, although I've had a few workouts that were too much.

Okay, so here's the writing update. It's more fun than my body. If I could detach my brain from my defective flesh bag, I would totally do it.

-Still writing like crazy which means I now have carpal tunnel. Whee! In theory I'm going to take most of August off to rest my hands (this will probably not happen but I will try to let things heal as much as possible). I was doing great for several months and lifting 10lb free weights to condition my arms, but all of a sudden my hands just fell apart.

-I have releases lined up for the rest of the year and am actually ahead a bit, well except for the part where I was going to write a novel in another genre. That novel is not going so well. I'm behind on that, but otherwise on top of things. I've been trying to shift to a schedule where I'm working 3-6 months in advance for a while now, and it's a good feeling to know my releases are set through the end of the year. It's less stressful and gives me time to be sick.

-Asked a major name author to endorse one of my books. One of the advantages of knowing someone before they hit it big.

-I was approached by a publisher who asked me to write for them. You've heard of them. I turned them down. Not enough money and their marketing was sub par. I can make more money without them.

-Realized I really enjoy figuring out how to market books. I suggested some authors do a collaborative project and have been helping them pull it together. I expect it to hit the USA Today bestseller list at the very least (NY Times is a harder nut to crack). I just wish I could have an idea that would hit a list like that with my pseudonym on it, ha.  I'm also running various marketing experiments and coops with the writers I hang out with online. It's like a big puzzle and I find it fascinating (although in real life I hate doing anything more than a 24 piece puzzle).

-With regards to marketing I approached someone about a partnership for a reader marketing business.The goal is to build a revenue stream that is independent of me writing as well as create platforms that market my work. They accepted and we're in the process of hammering out the contract. Even though we're at the legal part, I am actually not sure if it's going to happen. If it does, it will be an interesting experience. I hope it is as profitable as I think it is.

-I'm sponsoring an art festival thingie that ties in with one of my books and finally came up with swag for the exhibitors. Phew. Almost did not pull that one off. Swag is tough when you're on a budget.

-My sales are in the toilet still and August will be worse. I won't panic though unless my fall releases tank.





Monday, June 24, 2013

Still Kicking

I'm still here! Working like a dog.

Health-wise...doing okay. The asthma is relatively dormant. BP is alright. Weight sucks. Energy is mostly good although I have occasional weirdness. I'm exercising.

I switched back to the birth control pill. The progesterone side effects were driving me crazy and I decided to try it and see. So far so good. PCOS is much better on the pill vs. progesterone. Like, no contest. Who knows what the future holds though?

The big down side is the pill messes with my gut in really unpleasant ways. Everything is a double edged sword, but I would rather just not take the pill or progeterone for a while than go back on progesterone. Assuming my energy holds steady.

The writing is going sooooo slooooowly. OMG. I will continue to be scarce. I'm trying to finish two novels, a couple novellas and a handful of short stories like yesterday. I can't publish the one novel until I write the second in case something in the series changes on me, so really I have to write three novels. The idea is to preserve the ability to go back and edit the story line if big things change.

At least until I'm more experienced with writing series. I never thought I would write a series, I'm more a 'one and done' writer, but this concept is rich enough to support multiple books, and my writing brain has come up with all sorts of plot points and connections between characters that are way bigger than one novel. Series are also where the money is at for authors, so that's a bonus.

I am having a good time. I like what I do. It's too bad it's so volatile. If I can't reach a more sustainable income level, I'll have to find another way to pay the bills. The good news is, I've gotten really good at marketing and building a platform. I have a fighting chance.

Hang in there health. Don't poop out on me now!

Now, back to the writing cave. And don't feel bad, my family barely sees me either these days. When/if my income ever recovers, I can slow down, but, until then, I'm a slave to the keyboard.

Wednesday, May 22, 2013

Weirdness Such as This

I have to say I get very nervous when the super taste buds and the blood hound nose show up. I feel like a uselessly bizarre action hero who can smell and taste things no one else can.  The smell they usually catch sooner or later, but no one tastes food like I do.

Which is probably good since the flavor trends toward rancid with a side of dead rodent. (Or rather I imagine that's what a decomposing rat would taste like.) It's like I taste the life cycle. I get the intended flavor, the freshness I was aiming for when I chose the recipe, but then it keeps going until decay covers my tongue and I wonder if the meal I cooked might actually be poisoning people.

"Does the food taste okay?" I will ask my husband in a hushed whisper.

"It's great. I love this new recipe. Make it next week." Then he shoves in big forkfuls of whatever it is we're eating while I nibble at mine trying to convince myself I don't have to listen to my tastebuds.

(Note that ice cream always tastes fine. Imagine that.)

"Do you smell that?" I ask almost ducking as the cloying scent of flowers hits me. The lilac bushes are a good thirty feet away, but the scent is akin to some deranged ENT cramming the buds up my nose and into my brain.

My husband looks around and shrugs. Oh that crazy wife of his! Why can't she just hear things like all the other regular crazy people? "Smell what?"

Five minutes later, when we are right under the lilac bush he says, "Oh I smell it now."

It's moments like that when I wonder what my cortisol levels are like. Who knows? Not me!

So it's been a month since I posted.

Where the hell have I been?

I was not sick. I did not die. Other than my super sensory powers, I'm doing okay. Not perfect but as close as I can get to it.

My book sales did tank however. They fell faster than a balloon attached to a lead weight and launched off the Empire State Building. It's an arbitrary bureaucratic issue on the part of the booksellers. I could go on about algorithms and search engines and reader/market manipulation, but that would bore you.

So I have been dealing with that to the exclusion of all else. Barring illness that keeps me from trying to salvage what I can and rebuild, I probably won't be posting any time soon.

You know my email. If you need me, you can reach me, but there will probably be a lag of several days before I respond.

I'll be back at some point.

Thursday, April 25, 2013

About that River...

Denial is a powerful thing. It allowed me to ignore:

-loss of appetite to the point of missing multiple meals a day
-increased scent and taste sensitivity
-fatigue
-muscle aches and spasms
-loopiness at a level equivalent to being drunk
-cold sores
-some vague flank pain

These are all clear signs of adrenal whatsit and I ignored them all! Hell, I even went running. What special breed of idiot does that? Me! That's who.

Tapering inhaled steroids, which is what I did last week, can be a problem and it can also be just fine. Since summer is good for my lungs and my most stable time of year, I figured I would try to cut down on the steroids in my system. Basically, I got cocky and convinced myself that abruptly cutting the inhaler dose in half would go well.

Obviously it did not.

So here I am feeling not so hot and impatiently waiting for normal to resume. I'm trying an alternate day taper now to hopefully ease the strain of the adjustment. So far, it's not doing much. Next week, I start progesterone again and I'm crossing fingers that provides some support.

STEROIDS SUCK!


Tuesday, April 23, 2013

I Thought Spring Was for Hibernating

I had planned to write a post excusing myself from this blog, but my body had other ideas. I don't plan to abandon this blog because, let's face it, the asthma is going to come roaring back at some point and I'll suppress again. I'll need someplace to rant and rave about the misery. However, I had thought I would step back a bit and enjoy the lull.

There's a lot going on. I need to focus on my writing and develop other business ideas. We want to do a light remodel of the kitchen (new counter and floor) which means I need to produce the funds with writing. One house guest has left, another has arrived. The school board approved our exchange student. So, you know, I have a life and now that I'm able to get up off the couch, I want to go live it.

However...something is UP. I don't know what or how much of a problem it is going to be, but things ain't right.

First, my cortisol was not low. Or rather, it's only low for alternative medicine. No one else would find it low. I was not too concerned about it until last night. (And really the issue isn't what my baseline cortisol level is, it's the lack of the upper reaches of my stress response....something there's no real ability to test anyway, not until it completely fails.)

Second, I've had some loss of appetite. I've forgotten to eat several meals in a row more than once now. I haven't been able to finish what is on my plate fairly regularly. This is not good. It's an old school sign of adrenal insufficiency. (Don't worry, I'm still fat. F*ck you insulin resistance.)

Third, we went for a family walk, which, when you have young children, can be code for 'outdoor scream-a-thon'. My kiddo tires out easily, freaks about bugs and walks with her generally test the limits of our patience. They also progress at the speed of a crippled snail.

We could probably handle twenty minutes of the balking, but she manages to stretch it out to 45 or 60 minutes. If we didn't want to emphasize exercise as a family value, we would give up. We still might. Love my kid to the moon and back, but I could do without the behavior on walks.

To get my heart rate up on these excursions, I do some interval training. Light jogging. Some galloping, Chasses interspersed with walking. Nothing too major. Right now I'm out of shape because our vacation ended up being a bigger fitness detour than I anticipated. Mostly I've been walking 2 to 3 miles a day and am just now adding in these light cardio intervals (which only cover a mile).

Everything seemed fine. I'm careful not to push myself too hard. I don't want an injury, don't want to trigger the asthma and don't want to use up too much of my precious energy. So I hold back as a general rule and work my way up very slowly. Since I felt okay immediately after the walk, I figured I'd managed all my weird parameters okay.

When I went to bed later that night, I started to feel very ill. Post exercise adrenal ill. Severe nausea, burning stomach pain and lots of GI distress. I managed not to vomit, but was up quite late afraid to move or breathe too deeply lest I lose it.

Today I am loopy as hell, tired and weak, all the energy just wrung out of me.


Ah ha! I just ad an insight. I've been tapering the inhaled steroids. That might be the trigger here. AND I just realized I've been having some unusual muscle pain which would be consistent with steroid withdrawal. Oh wow. Phew. Look how much writing I did before I figured that out. That's how slow the synapses are today.

So I might actually feel better by next week.  Boy this post just did a 360 didn't it?

Monday, April 8, 2013

Alternative Slime

Saw doctor alternative...my cortisol level came back low. I didn't get a copy of the labs (but will ask for one) so I don't know the number, but that was not what I wanted to hear.

However, what alternative medicine considers to be low cortisol and what traditional mainstream medicine deems low are two very different things. You've got to be pretty low for a endocrinologist, not so much for integrative medicine. Based on how I feel, I can't be super low. I can't be.

So today I am allopathic by-the-book medicine all the way. In that paradigm, I'm fine (usually) and I prefer it that way, thank you.

And no, I will not be starting steroids. Day-to-day seems to be pretty stable with progesterone, but I still have issues with illness and apparently big trips. I'll deal.

My other hormones are all wonky still, but the new theory is...ummm still to be named, but a component of it is that menopause is ruled out.  (We'll see about that.)

I left the appointment with a butt load of vitamins...all of which taste terrible. (Tip: Never trust alternative medicine to give you anything that tastes good.) I've got four that come in slime gel packets. Total yuck on both texture and taste. Gag. Like eating frog diarrhea.

If the vitamins don't do anything (which they won't) we move on to some really fringe experimental bio-idential hormone stuff. I'm willing to try it only because it's relatively cheap and fairly safe, but I don't expect it to do much of anything.





Tuesday, April 2, 2013

Shhh! I should be working.

Don't tell anyone.

I'm slacking off.

I really need to go to the bank, but it's the beginning of the month and I don't feel like being neck deep in octogenarians. Seriously, the lines are ridiculous when it comes round to social security check time. I'm always surprised that thieves don't follow some of these folks home and rob them blind. I would think it would be easy pickings. Everyone seems to roll out of the bank (I say roll because they all have walkers) with a serious wad of cash in their pockets.

But I'm not a thief so WTF do I know?

I should be writing, but that's not flowing either. (The bank thief thing above doesn't count.)

I did make a book cover.

Something kind of cool happened the other day. I got a phone call from a stranger. They tracked me down from a fundraiser we participated in for our church wanting my pumpkin cake recipe. The one I make with almond flour and ground flax seeds. Apparently they loved it and so did their friends.

I was, of course, pleased to hear that someone loved the cake so much they hounded people for my phone number. For the last two months. That's some serious pumpkin cake love.

I promised to mail them the recipe, however, I warned them they probably won't get much out of it since they don't already bake with almond flour.

What a nice compliment though. Made my day. I worked very hard on perfecting that recipe, it's good to see that effort paying off.


I'm feeling somewhat more okay. I finally have adjusted to the home turf time zone. That took forever.  And I'm back on progesterone so things should continue to improve, right?

Saturday, March 30, 2013

Alternative Medicine for Adrenal Insufficiency/HPA Axis Suppression

I got this comment on an old post the other day:

"My husband is a physician suffering from all sorts of complications after a year on Prednisone including two taper attempts--the first nearly killed him with an adrenal crisis. You definitely need an endocrinologist working with you and insist on being monitored closely with blood work done frequently. Does anyone have any thoughts or suggestions on home to go the alternative route in conjunction with conventional medicine? "

Having done a lot of alternative or integrative medicine stuff to try and support my recovery, I feel I can say, the short answer to your question is, no, there isn't really an alternative route for steroid induced adrenal insufficiency.

The best 'natural' treatments for HPA Axis Suppressoin are things like taking lots of B vitamins as well as C. You should also monitor your blood pressure and salt food for low blood pressure. It's also important to keep sugar on hand for low blood sugar.

Don't ever leave home without some form of salt and sugar. If you can keep blood sugar and blood pressure stable you can avoid a lot of bad adrenal ju-ju.(Ju-ju being not digging yourself into a pit where conditions are ripe for an adrenal crisis.)

Plus, you should sleep as much as possible. And don't try to exercise until you can handle regular activities of daily living (i.e. work, cleaning house, running errands all the usual stuff you couldn't do while in the depths of adrenal insufficiency). You might not be able to tolerate exercise for up to a year or longer, depending on how resilient your system is (or isn't as the case may be).

I think some people are just really sensitive to adrenal suppression and don't come back like the text books say they should. And it sucks. All you can do is ride it out.

If you go the alternative route, be careful. Likely the first thing they'll want to do is hook you up with a Meyer's Cocktail via IV. Every alternative doctor has a different recipe and some of them add steroids to the mix, which might not be such a good idea for those of us trying to recover adrenal function.

Alternative medicine likes to 'rest' the adrenals by giving patients steroids and using a diagnosis of Adrenal Fatigue. Sometimes the doses are as high as 40mg which will not stimulate your HPA axis to function. In fact, it will further suppress it! Some alternative patients have found my blog because the steroids they were given left them suppressed. They weren't necessarily insufficient to begin with, but all the 'resting' of their adrenal system ensured they ended up that way.

The most effective treatment alternative medicine has to offer adrenal suppression patients is bio-identical hormone replacement...if blood work shows you need it. In my case, I had low progesterone and replacing that has made the biggest difference out of anything I've tried (ostensibly because it is one of two precursors to cortisol production). However, not everyone will have low levels of hormones.


Regarding the difficulties with tapering...Any time tapering steroids is a disaster that means you're not going low or slow enough.   Too few physicians understand this 'law of tapering steroids'. It's not an area of medicine they know. They still think adrenal stuff is rare or that steroid induced adrenal stuff follows all the 'rules' of their medical textbooks.

Based on my experience and that of other patients, the ideal taper is to drop the dose by only 1 or 1/2 mg every taper. You don't taper again until you feel okay at the new dose.

Also, try to switch to hydrocortisone with its shorter half-life. Take all your doses before noon and then nothing after (you might have to work up to this). Once you adjust to it, the shorter half-life will support recovery whereas prednisone's 24 hours+ half life impedes it. (Note: Don't try to taper until you've fully adjusted to the switch from prednisone to hydrocortisone. Be advised, switching steroids can be rough...some level of misery is unavoidable, but shouldn't last more than ten days.I ended up alternating between prednisone and hydrocortisone for a while until my body could handle the change in half-life.)

If you are struggling with a steroid taper, please check out the forums links that show up when you go to leave a comment on my blog posts. Those patients know what they are talking about and are an invaluable resource.

Tuesday, March 26, 2013

Surprise!

It's been an interesting few days. I did not travel well either going or coming. Adrenal whatsit does indeed seem to be active.

Right after I posted my last post I got the "stomach flu."  You know, the stomach flu no one else in the house gets but me. The intense burning stomach pain was a match for what I felt during the supposed adrenal crisis in 2011.

Of course, it could be anything. Food poisoning, stomach flu for one etc... But it felt very adrenal.

How strange. I am flabbergasted that it would happen like this.

I did not stress dose because I didn't actually vomit, just felt like it all the damn time. I just tried to ride it out and crossed fingers, toes and curls that it would be mild. So far, so good. It took about 5 days for the burning pain and nausea to subside. My energy is still kind of yuck but I did go for a walk today.

I know Addison's patients say they have issues with travel, but I don't have Addison's and thought I was pretty much over the hump. Huh. Guess not.

Well, at least I didn't have to fall back on steroids.

I'm very tired right now. The weather is not helping. The time zone change isn't helping. I so want to Rip Van Winkle.

And the real stomach flu is coming for us. We arrived home to a shut down preschool, cancelled dance classes and dehydrated kids in the hospital. Everyone's puking around here. I've stocked up on Sprite and Jello and am engaging in lots of magical thinking which goes something like...

Maybe we won't catch it because we've been out of town. La-la-la-la I can't hear you puking.

Then I take my pointer fingers and make a cross like I'm averting the Evil Eye.

On the work front...some exciting stuff. Although it's been difficult to find time to write. We're just so busy, going here, there and everywhere and bringing people home with us. (Also, ZOMG the preschool homework. Pages of it! WTF?) I'm kind of in hostess mode for the next few weeks as we have a house guest who needs hosting as opposed to the more typical 'person who lives with us' guest. So my time is not my own.

However, the last story sold pretty well. The sequel is in final edits (if I can find time to work on it) and I'm branching out into some cross marketing by sponsoring some stuff. The sponsor thing is what I'm most excited about. I have no idea if it will be effective or not, but it should be hella fun...I get free tickets.

 PS: I believe comments have been enabled once again.

Wednesday, March 20, 2013

Reentry

It's past midnight and I can't sleep because we've traveled backwards in time. My body thinks it's 10pm. The kiddo is still up even. I can hear her playing in her room.

FYI if you're going to hop, skip and jump time zones, don't do it the same time as 'spring forward' daylight savings time. That just makes it worse.

So we are back home for a few days and will be leaving again shortly. Then a house guest followed by another. Never a dull moment!

The trip went well, but there were some surprises. Getting out of town was so stressful I almost didn't want to leave. The kiddo did indeed have strep and that had us running around like crazy headless chickens to get her to the doctor, fill her prescription, talk to TSA about how to transport it and pack. The dogs were looking pretty frail and we wondered if they would survive. Then the furnace died the night before we were supposed to leave.

Luckily my husband is very handy and has lots of industrial contacts. Between his skills and a few furnace people on speed dial, he was able to sort it out. But it was touch and go there for several hours...late at night. That's just when you want to be fixing your furnace right? In the dead of winter with all the stores closed? It's so awesome, you should put it on your bucket list.

Changing time zones and climates hit me like a ton of bricks. My lungs were riled up for almost a week--a huge weather swing from 80F to 30F didn't help--and...I had some adrenal symptoms. To the point of considering a stress dose, mostly because I couldn't wake up a few times. (And I don't mean, lazy ass lolling on a bed, I mean I want to wake up, I am trying to wake up but I can't, the fatigue is that thick.)

I haven't had much adrenal anything for a while. I think the flu was the last time I had any symptoms. It was disappointing and unexpected. Although I guess I'm not quite a year out from my last high dose of steroids so maybe two months actually matter when it comes to these things. Thankfully, after the first week my body mostly got over itself.

Overall, we had a fabulous time. Even better, our elderly dogs are still alive and looking pretty good at the moment. Huzzah!

Now to somehow navigate the coming adventures along with some writing deadlines that I cannot miss. That should be interesting. Oh and I have to get the kiddo in for a vaccine shot before the neighbor kid infects her with some new unholy terror of a germ.

Until my body says otherwise, I'm chalking up the adrenal stuff to the stress of travel and possibly maybe a bug as I had a sore throat for several days but never really became all that sick. I am assuming it won't hit me now that I'm on home turf. I don't know.

And comments are still off because I forgot what I did to turn them off. I'll get to it when we're finally home for more than twenty four hours. Gosh, while we had a great time, I'm kind of looking forward to having nowhere to go for a while!

Sunday, March 3, 2013

Quick Update:Comments Off

I believe I've turned off comments...assuming I hit all the right buttons on blogger. If not, I'll keep playing with the settings until I do or take the blog private for the next few weeks.

(Edited to Add: Comments are off. You won't be able to post anything, it will be blocked.)

Someone had a bad day as a medical professional and is hate reading the blog, leaving angry comments as they go. Since I'm about to go out of town, I'm shutting it all off so I don't have to deal with some asshat's temper tantrum.

Secondly, the neighbor kid appears to have given mine strep. She's got the fever and the rosy cheeks with glassy eyes just like her little friend. Of course this all hits the day before we fly out. Naturally! I'm getting her into the doctor for antibiotics asap and am crossing fingers the bug doesn't hop to me for a joy ride.

I wasn't going to bring the nebulizer with me, but I guess I'll be packing it now.

I'm trying not to hate the neighbor kid's parents right now because any kid could've passed on the bug, but they are just so...negligent, so not caring if they're kid is sick. This is what? The third time they've sent their obviously ill child over to my house now? WTF? I really want to say something because I am not without risk here, but I'm so ticked I don't think I can be nice.

So I'll bitch about it here instead. Yes, it's impossible to stop all the germs, but we shouldn't have to welcome them with open arms either.

Wish us luck with our vacation for four, the three of us and strep. Whee! At least sick 5-year-olds bounce...I doubt my kiddo will notice she's sick once the fever breaks.



Wednesday, February 27, 2013

Up to Date

We're gearing up to leave on vacation and I'm not bringing my laptop. Ergo this may be the last post for quite some time as we'll be gone almost a month.

I probably shouldn't say vacation because we're really just going to visit family. If a trip comes with extended family dysfunction, it's not a true respite.

But we'll have fun anyway. My husband and I are good that way.

I'm feeling okay. Tired and worn out, but I'm off progesterone right now. Plus, the kiddo is not sleeping well. She has prolonged night terrors that just go on and on and on. She cries, yells and talks in her sleep all night long sometimes. She sleeps through it, but we don't. They seem to pop up every few months.

She's also just had back-to-back bugs again. She just finished up what one kid gave her when her little friend came over and brought all her bug buddies to share. (Gee thanks.) So far, I've been solid and haven't been acutely ill, although I suspect I've flirted with it here and there. I think this means I'll be sick on our trip. That seems to be the way Murphy's Law works.

The dogs are a concern. Our black lab is relatively stable at the moment. She's incontinent once or twice a week with medication. We've set up her bed so it's pretty easy to clean up. The yellow lab is having pain of some kind. We took him to the vet and had him on pain medication for a week. He's better but not back to normal. I have no idea what to do for him and the vet doesn't really know what the problem is either. I am mostly just praying that he heals and is okay while we're out of town.

We are in the process of becoming exchange student host parents and hope to hear we've been approved soon. I typed out a 'year in our life' list of things we do (generally) month by month so our student kind of knows what they are in for with us and I couldn't help but add a silent 'assuming I'm not sick' after each activity. I hope I'm healthy. If not, I'll orchestrate things from my sick bed like I have done before, but it won't be as much fun for anyone.

I think we've decided what we're doing about kindergarten for the kiddo next year. She's going to the charter school. I don't think the grant would pan out for more than a year, which would put us in a position of needing to pay tuition or yanking her out of school just when she's made friends. Knowing her as I do, switching schools would not go over well.

I'm not opposed to paying tuition BUT the kiddo is going to need services that will be out-of-pocket for us and I'd rather conserve our money for that. We're fortunate in that her deficits are not large, but that means it's going to be up to us to bridge any gaps as she won't qualify for most state run programs after this year. So charter school it is. At least as things stand now.

I'm reserving final judgement until after we see the results of her cognitive assessment which should be soon. All they said during the assessment was that she talks like an eight-year-old. That's  it. That's all I got, so I'll be interested to see the full report.

The writing...can kiss my ass. It's been an uphill slog of late. I finished a novel that will be part of a larger promotional project with other authors. I haven't written anything since. I think my brain melted. I was pushing hard to get that novel out.  I'll probably be ready to write again while we're on vacation, right when I don't have a laptop. Boo hiss.

Having time to write but no impetus to do so (i.e. me right now) is un-fun. Wanting to write but not having time or computer access is just as unpleasant. Let's hope I'm bursting at the seams with words when we get back and enter into another highly productive period.

I keep telling myself, 'it's good to take breaks.' I guess I'll know if this is true by the end of March.

And that's the latest.











Thursday, February 21, 2013

Not Following the Rules

I had a hot flash. It hit in the middle of the night. I kept peeling off clothes and kicking off covers trying to cool off.

Then my body went 'So you think you're menopause? I'll show you. Here's every cycle you've missed of the last nine months all at once.'

I believe that resets the clock on menopause, doesn't it? I have to go for a year without a cycle, right? I keep going almost a year since my kiddo was born and then coming up short.

Meanwhile I've been exercising and starving and not losing weight. The last ten days or so I've been trying a new approach. I don't eat dinner. We juice and then that's it, nothing until the next day. Kind of like an intermittent fast which is supposed to improve insulin sensitivity.

In practice, it feels a lot like starvation.

By nine p.m. my stomach is in knots and I can't tell if I 'm hungry or if I'm going to throw up. Last night I broke down and had a piece of cheese because I was afraid I wouldn't keep down my medicine if I took it on an empty stomach.

When I go to bed, I'm so hungry it's hard to sleep. I wake up hungry. I eat. I do eat, but it doesn't stop the hunger at night.

So I've been suffering for about ten days through this misery now. I'm working out too. Hard. Haven't lost a pound. Today I finally showed a loss of 0.4 lb. Ten freaking days and that's all I get? Wow. That sucks.

My husband is kind of doing the same thing I am except he eats more at night than I do--he can't stand the hunger and skips breakfast a lot. He's lost five pounds. Breaking all the rules.

My belief is that I can't eat anymore. My body is too insulin resistant to miss an opportunity to gain weight. I had hoped I could trigger weight loss with the current approach, but that's not happening. What I was doing before didn't work either.

So now what?  Starve all the day long? I don't know if I can do that. My saving grace right now is that I know I can eat the next morning, that gets me through the nights.









Monday, February 18, 2013

Adrenal Progress Notes

I thought it might be time to recap my continuing progress from the pits of adrenal hell.

1.I can get up in the morning. There's just such terrible noodle bones with adrenal stuff, you want to get up but you can't. You're limp and weak and just useless.

A lot of times, if getting up went okay, I would hit a wall of insurmountable fatigue within an hour of going upright. Adrenal suppression/insufficiency/whatever you want to call it has a gravitational pull....right into bed.

It's been the one adrenal symptom that lingered way too long and I'm glad to see it go.

2.I've been able to increase the intensity of exercise without coming down with a cold or stomach flu. Barring any further illness like the bronchitis last May, I will be able to do anything I want this summer.


3.I can't lose weight, but I can gain. The next time my HPA axis suppresses I don't think I'll work so hard to make sure I eat. I plan to maximize the weight loss effects of adrenal insufficiency because it's clear that I can't do much with this insulin resistance fat assery I've got going on.

Case in point, I've been really working to lose weight and nothing. Nada. No go. Literally nothing. It's depressing. I am always going to be fat at this rate, exercise is just to package it as attractively as possible.

4.I haven't thrown up in a long time. Remember how I had food poisoning or the stomach flu almost every two weeks? I was so clueless. It was the adrenal stuff, but I was blind. The constant stomach pain is gone too.

5.I am still susceptible to illness. I think. The kiddo has a bug and I spent most of the afternoon sleeping, which is unusual for me. I'm just exhausted and all I can think is I'm coming down with her boogies combined with the aftermath of killer workout I did last night. Plus the kiddo's kept us up the last two nights with night terrors. Like trying to sleep through a damn horror movie you can't turn off.

(Note: Details of #5 may slightly contradict #1 and #3, but I swear it's better. Really.)

Speaking of bugs and going off on a tangent for a moment...

I was reading a slam site that felt a certain mommyblogger is faking it because they and their kids are sick so often.

Ummm hi. I didn't fight a bug without antibiotics until my 20s. Seriously, I used to fist pump and hiss 'yesssss' when I got through a bug all by myself without any medical attention. I still get excited.

Some people have shit immune systems.

Other people bring their sick kids to a dance recital and sneeze all over you, which is what happened to us last week. The culprits were/are my friends, but I still wanted/want to smack them. Stay home, dammit. No one wants your germs.


Friday, February 15, 2013

Real Life Experiments

I'm having a weird out-of-sorts day. Everything's too loose and too tight at the same time. Not sure what to do with myself...so here I am.

I think I found a way to limit my reaction to wheat. Or not. I don't really know, but I did experiment with taking Alpha Lipoic Acid with wheat and it seems to have reduced the reaction markedly.

Why that works, I can't say. For whatever reason Alpha Lipoic Acid (ALA) is a wonder drug for me.

The asthma still triggers, but at least the ugly itchy leper rash response is limited. Any new rash I see while using ALA is pretty light. Plus, I also added in some otc hydrocortisone cream to treat the existing rash. My neck looks half way normal now.

ALA is not good enough for me to eat wheat on a regular basis or anything, but when we're out and about, keeping it out of my system is crazy difficult. It's nice to have a tool to use to combat the problem.

As it happened, we went to a fancy dinner dance. It was a fundraiser with a fixed menu full of wheat thickened sauces*. So I popped the alpha lipoic acid as I ate, danced furiously, got a good whiff of second hand cigarette smoke and then had an asthma attack.

But my neck didn't break out. She said brightly.

I did, however, fall asleep in the car on the way home. I am always surprised at how quickly asthma like that can eat up my energy. You would think that brand of exhaustion would be old hat to me, but I think most of the time I have bad asthma, I'm also too damn sick to really care or notice how I feel. That's why you'll find me trying to grocery shop with an oxygen level somewhere around 90, completely stumped by the fact that I don't have the strength to push the cart. Classic sign of not-with-it-ness.

These attacks that aren't associated with a germ overlay have a strong contrast between okay and not okay. One second I'm fine, the next I can't even stay awake because I'm so zonked. It's jarring, like a sudden power outage. My husband had a terrible time getting me up and into bed.

The attack wasn't serious, but raged for several hours. I used the albuterol quite liberally and it just squeezed me tighter. The next day wasn't too bad though, so fairly limited in scope.

*Yes I tried to think of other ways to mange this. Eating before the event. Bringing food to the event. However, I wanted to try the ALA again and see how it shook out. I wish I hadn't gotten a whiff of smoke because now I can't tell if the trigger was the food or the cigarettes.