Thursday, September 30, 2010

Not Worth It

It turns out doctors just, like, say anything on line. They say one thing under their bio on the hospital website. Another thing for their professional association.

So I have no idea who does or doesn't do adrenals.

My own endo, doesn't list them at all on the hospital website.

On the professional website, they do.

????

All I know for sure is the meager patient network I've found has no docs for my area.

Today's thought is to go to an endo where my pulmo is. (Avoiding the ass endo I saw there previously.)

I WANT MY ADRENAL GLANDS BACK.

And I really don't want to ever have Secondary Adrenal Suppression (SAI) again.

EVER.

Which means I need an endo who can consult with the pulmo. So we can at least say we tried.

Being in the same health system seems to facilitate that.

So that is my thought of the day.

It can't hurt.

If it doesn't work out. I will try to find a pulmo in the network with the current endo and go back to the current endo to push for some kind of coordinated care. (Only thing is, their pulmo dept kind of sucks and it would be difficult to establish myself all over again since I have the 'you don't have asthma' curse.)

I want to treat my asthma in a way that does not enable the adrenal suppression. This is key, in my humble opinion. The priority has to be getting my adrenals back.

For example, I did not start Pulmicort with the latest flare. It just becomes another steroid to wean off and it complicates things when I have 2 separate steroids to wean off of. This is part of the reason why I treated the last flare with more prednisone, I was not about to touch Pulmicort as I feel tryng to wean from it contributed to the last adrenal crash I had.

(Know how I got off it? I just stopped cold turkey while taking prednisone. I figured I could bump up the prednisone if necessary to compensate and just wean from there. It really is truly difficult to be weaning from more than one steroid medication at a time, I felt this gave me a good shot at actually getting down to one steroid. I seem to have been right.)

This also goes back to one of my to-dos from March, build a better neublizer treatment. The nebulizer could be really effective for me and help me not feed the SAI when treating asthma. However, the pulmo has been blowing me off on this since April.

Big sigh.

I want more than just albuterol solution in the home aresenal.

Honestly, what is so f*cking hard about this? I really don't see why I can't get any forward motion or support here.

I don't know about anyone else, but I can't live like this. Thankfully I have my family, but if I was still infertile and going through SAI? Life would not be worth living. At all.

This is my own personal 'worst pain'.

Wednesday, September 29, 2010

Doctors Doctors Everywhere, But Not a Drop of Actual Medical Care

I am better. Last night was great, but this morning is kind of blech. I stepped down to 5mg anyway. I just want to get off Prednisone.

But I am having a hard time figuring out how.

I didn't feel so hot on 2.5mg and actually bumped back up to 3mg (where I had felt good) to bolster myself for all the cleaning ahead that day. Now I am dreading the taper down, knowing how much it's going to hurt.

My big frustration is I can't find anyone who has been through this kind of experience. There are a couple message board threads here and there, but they are old and lack information.

Although I did find one reference to wildly swinging blood pressure being a symptom of adrenal strain. Which makes sense.

When I go the medical study route, it's not much better. Not much info. When talking about secondary adrenal insufficiency all I get is that it should resolve, prognosis is good, and that acute adrenal crisis is rare. Okay fine. But what I want to know is what it's going to be like living with it and what I can do to help myself along. How should the prednisone be handled?

So then I think, I should find an endo who actually looks at adrenal stuff as an area of interest/expertise. Why?

There are things I don't like about my medical care now. Such as...

1. My pulmo has no clue about adrenal stuff. Which is bad considering they are going to be the primary prescriber. ERs are even worse.

2.My endo hasn't shown any interest in preventing this from ever happening again. I can not emphasize enough that this is SO much worse than asthma. The quality of life, the limitations on my ability to live my life are much more profound than I think anyone realizes.

I absolutely need someone in my corner.

3.I have no parameters. I am left to flounder and make up my prednisone dose as I go. The last time this happened we did Cortisol challenge tests at regular intervals so we knew exactly what my adrenals were doing (or not doing as the case may be). The prednisone dose was determined based on actual data from my body. Oh my God, the science! It blinds me!

It was a sucky year and very unpleasant but the blood work showed steady progress. I got a lot of empathy from my pulmo at the time too which was tremendously helpful, because, let me tell you, with the pain plus fatigue that weaning causes and the amount of time it lasts, you need people to hold your hand and pull you along or else you are not going to make it. Or maybe I'm just a big fat wuss.

In my fantasies, my endo would give my pulmo some guidelines to follow. They would be a little more hands on with me and the prednisone. Maybe some testing just to see how bad or good things are.

Because you know what? It is possible that the adrenals won't come back. Like I told the hubby last night. I did SO well in June and July after I weaned and then mysteriously tanked in August. I had happy stress, yes, but that should not have caused me to tank. I wasn't sick, I didn't have surgery--the adrenals should not have pooped out like they did. I don't know why they did and it makes no sense to me. August doesn't pass the sniff test.

Then they pooped out again just from exercise and me fighting off an infection. Again, not technically sick. Not meeting the criteria for needing 'stress dose steroids.' So WTFBBQ?

But then again, I can feel okay on a low dose of prednisone which, I believe, indicates I have some cortisol production.

I don't know.

Which is the problem. I don't have any idea of how this trip is going.

So I have started looking from someone who deals with adrenals. There is one doc in my area that appears to work in adrenal stuff. Worse than the lack of endos, I think it's the doc I saw years and years ago who was so angry I didn't know that solumedrol was the same as prednisone (hey I was 22 years old, I didn't know my ass from a hole in the ground). He screamed at me violently over the phone about how I botched the blood work. I never went back.

Well, duh, right?

I have been yelled at by some many doctors, for no good reason I can find, that I think State Medical Boards should start disciplining doctors for being verbally abusive.

Anyway, that experience makes me gun shy to subject myself to this doc again, although I'm older, wiser and meaner now (not to mention resolved to scream right back). I do plan to call and verify if it is the same doc on the off chance my memory is bad. Maybe I will get lucky.

The other hospital system has some researchers that deal with Cushings type issues and publish studies galore, but no one seems to know if they take patients. There are docs a couple hours away but, long term, that is not ideal. I need someone who is present. Adrenal problems, by definition, involve severe fatigue. There is no way I can manage a long distance relationship when ill.

The real kicker is, there was an endo consulted the last time this happened, but I have no idea what their name is. My pulmo at the time would not allow me to go see the endo directly and instead conferred with them on my behalf. While I appreciate the care they provided, they ended up doing me a HUGE disservice because I don't even have a direct contact with the endo who kind of knows me as a patient. When the pulmo left the state, moving on and up in their career, I was left high and dry.

Which I still am a decade later.

Monday, September 27, 2010

I Just Can't Catch a Breath Here

:(
Can you sprain a lung? Is that possible? I think I did something to the left lung. It hurts to breath, especially on that side. Like I'm raking my lungs over shards of glass with each breath.

The biggest problem is the pain followed by the feeling that I'm just on that edge of a big spasm.

But my peak flow is fine. What they call 'good air movement' in the med biz.

I tried to take a nap but since the toddler wasn't napping and with the pain, I couldn't sleep.

I've been taking my albuterol since yesterday, maybe 10 times in 2 days. That's a lot for me.

After the no nap, I caved and took 10 more mg of prednisone. At the time, I questioned myself. I mean, I could breathe, just look at my peak flow, it only felt like I couldn't. Apparently, if the small airways are shot but the big ones aren't, the peak flow can be inaccurate.

So I'm not that sick.

On paper.

In real life, this is bad. I'm very short of breath on activity and have I mentioned the pain? Or the spasms in the muscles of my rib cage?

As much as I second guessed myself on the prednisone, I am thanking all that is holy that I took it. Why?

Well, I had my first student of the year.

Unfortunately, their assessment of the home environment was not entirely accurate.

They do too smoke in the house. Right in front of me in fact.

They do too have a cat.

None of this was disclosed on the intake forms.

The only reason I didn't turn heel and leave is they stopped smoking and I didn't know about the cat until the end (although I kind of wondered when I spotted the cat nip toys).

I informed the family I wouldn't be their tutor, but they said they would meet at the library if that meant keeping me.

Sigh. Don't get me wrong, I like being liked. I think I'm a decent tutor BUT showing up is half the game and a lot of these families struggle with attendance. I hope they are as motivated as they say they are.

Meanwhile, I'll be giving the nebulizer a blow job. If I had not taken more prednisone, it would've easily been ER time.

This is where I begin to feel disabled, like I've been put on hold against my will. It doesn't matter what my intent or desire is, it's beyond my control. I can't even work without accommodations and if people don't properly disclose things, I get screwed. Sooooo frustrating.

Riding the See Saw so Hard My Butt is Broken

The hubby does most of the serious cleaning. The kind that requires heavy duty chemicals. For years he did the dusting too, because it was a major asthma trigger.

Good thing the hubby is a little OCD about being neat. He likes cleaning. It fulfills him.

(But he's not very good at it, which is funny. Although we are never telling him this, okay? For instance, he dusted yesterday, I inspected --being a little anal about relatives visiting, otherwise I would SO not care--and found lots of missed spots, which he vigorously denied were dusty. We actually had a discussion about what constituted dusty. Ha. Cleaning is funny at our house. Or, at least it amuses me.)

There are a few cleaners I'm okay with. Or I used to be okay with. I found out yesterday they are now no-nos. Huge no-nos.

Windex.

Swiffer wet pads.

Both are on the list of chemicals that will now give me an 8 hour asthma attack.

At least judging by yesterday's performance.

Not a fun day.

The adrenals bottomed out from all the cleaning and asthma.

Add in several days of less-than-stellar sleep due to the toddler and...

More prednisone for me.

I start working tonight. With twitchy lungs and sucky adrenals.

I thought I was going to exercise today. Guess not.

Saturday, September 25, 2010

Bullets

1. I did not get sick. Point 1 for my immune system. Hopefully I did not just jinx myself by writing this out.

2.Groceries are too expensive. Healthy eating is way too expensive. Too bad I can't subsist on Ramen.

3.The adrenals are...touchy. I was okay until I went to the grocery store last night. Something about spending 1.5 hours under industrial lighting does not hit me right. That special leaden feeling hit my body and I had some stomach/back pain with nausea and a headache. Actually, I've been having back pain consistently and the headache started when I dropped down to 2.5mg. It's frustrating and keeps me up at night.

4.I am exercising but not every day and not anywhere near the intensity I was. So preserving some of my fitness but not progressing, which is the best I can do. I am both too busy and too tired to do it daily right now.

5.Plus I need a nap every day. I'm torn as to whether I should give it up or take the rest under the theory it will help my body get its sh*t together.

6. The toddler's PT is going well. She graduated to every other week. I'm finally seeing some progress at home. The therapists "love her personality" and gush about her every time we see them.

7.However, the toddler can't run for sh*t. She is a few weeks away from 3 and still runs like a 16 month old.

I took her to a preschool sports class. There were 3 of them, all girls, all within 4 to 6 months of each other in terms of age, all about the same height (very unusual since the toddler is so tall). One is a gifted athlete and is going to get college scholarships--you can see it already. Apparently NFL trainers have seen this kid and said much of the same (at least according to mom who has some NFL pro neighbors). The other was more typical of her age and then there was the toddler.

She can't run. Her gait is really weird, she has no stride. Hopefully this is transient, but I am having gut sinking flashbacks to my school years when I was the last to be picked for any team. You would never know the toddler's father was ranked 3rd in his country for wrestling and is a gifted athlete himself. If she didn't look like him, I would swear the IVF clinic managed an immaculate conception with just my deficient DNA.

I will ask the PTs about it as I'm not sure if they've watched her run yet.

But she didn't fall or notice that she wasn't keeping up. She LOVED it. She was running and screaming "Look at me mommy" and when she scored a soccer goal she bowed to spectator applause. She was totally cracking everyone up.

Thank God she's too young for these activities to be exercises in public humiliation like they were for me. Hopefully we'll work her through the worst of it before kindergarten.

7. Got my new medic id. It's a silver bracelet. Surprisingly, I like it. The medic id consistently rests beneath my wrist which makes it less visible. So I'm on the down low, which is where I want to be. :)

Thursday, September 23, 2010

OMG! FOOD!!!!!

So I was watching Biggest Loser the other night--a show I kind of hate for a multitude of reasons-- and ended up in the kitchen as a result, making this:
That is bacon. Nitrite free 'better for you bacon', but still bacon. With fat.Wrapped around Hungarian Hot Peppers stuffed with plain cream cheese. I doubt the producers or trainers or contestants of Biggest Loser ever imagined their show would inspire such consumption of fat, but it happened. It was delicious too.

The poppers are low carb legal, but a calorie bomb best avoided if weight loss is the goal.

I kind of think my appetite is back.

Not just my appetite, but my ability to enjoy food.

I can't tell you how weird it is to be starving, yet not find anything appetizing. I've been forcing myself to eat and having to remember, oh yeah it's lunch time, I should eat something. This has been my life since April-ish, basically force feeding myself to avoid low blood sugar. Even my cherry pie indulgences over vacation were a challenge. My appetite could've cared less, but my memories of good cherry pie pushed me through the motions.

I don't know if this latest appetite surge is due to prednisone or some positive change on the adrenal front or a combination of the two, but not only am I hungry, I want to eat.

Food tastes good. I am able to eat things that formerly repulsed me and made me feel nauseated just by looking at them.

The only thing is, what I was eating before is turning out to not be enough food. Yet I need to still lose weight too. So this has been interesting. I've forgotten what it's like to have cravings and how to cope with them. My dieting skills are a little rusty.

I'm going to jack up the fat and protein next week to try and induce ketosis which should curb some of it. I imagine I will also eat a couple heads (bunches?) of celery in one sitting for a while. And make more poppers.

For now, I'm eating two chocolate muffins in the morning and trying to have a low carb friendly snack at the ready. And focusing on protein and fat as much as I can until I can get to the grocery store this weekend and stock up.

Also, maybe stop watching Biggest Loser.

Wednesday, September 22, 2010

I Want Summer Back

I feel better. I am weaning very very slowly. So slowly, I sometimes think this must all be in my head because how could 1mg of prednisone make a difference either way?

But it seems to.

Or, at least, I'm not interested in finding out the truth of the matter.

I started at 3mg and am now down to 2.5mg. Next stop 1mg and then some alternate day stuff. Crossing fingers and performing voodoo rituals so I will stay healthy and not have any cause to take prednisone for quite some time after this latest wean.

So the lazy days of summer have faded into Fall. Toddler is in preschool and physical therapy. I am working freelance projects and suddenly have more students to tutor than I can handle.

Somehow I need to create a master schedule that

-gets everyone where they need to be
-feeds people
-allows me time to work
-and exercise
-and clean
-and have QT time with my family

Have I mentioned that a mentally ill relative is moving in later this week? For an extended stay? And by mentally ill, I mean someone who can't be left alone with the toddler.

Yeah. Gonna be FUN over here.

I figure if I go straight through from 7am to midnight I might be able to do it all. So long as I never need a nap or want to catch an episode of Glee and don't want more than 6 hours of sleep a night.

Also known as, burning the candle at both ends. Which did not turn out so well for me in August.

This ought to be interesting.

Tuesday, September 21, 2010

Under Pressure

So the relative RN says to me "90 over 60 is normal for me. I am fine."

Yeah. I know.

Some people have naturally low blood pressure. I used to be one of them until this year.

I was 115/70 something for the longest time (Spring through July) and felt fine. Then my blood pressure started creeping up again despite continual weight loss and an exercise regimen that got my resting heart rate down to 60.

I cut salt. Did nothing, although if I eat salt it will increase my BP, but cutting it out didn't appreciably lower it. Yes, salt has a one way effect on me for some reason.

I cut caffeine, had a little slip and then cut it again. Did nothing.

My BP went higher still until I was in 140/90 territory.

So I started Liosinopril (sp?), per a pre-existing agreement with the PCP, which did nothing, just like the last time I was on it. Well, it does make me pee. A lot. Urgently.

I hadn't gotten around to adding the ACE inhibitor (which also does nothing) when the adrenals started crashing again.

While some people may feel great at 90/60, I would challenge them to stay upright as they dropped from 140/90 to 90/60 or even 80/50. Those drops threaten to bring me to my knees when they hit.

I don't know what is going on with my blood pressure. I really think there's something hormonal at play, but so far I can't seem to get anyone with a prescription pad to listen to me.

Monday, September 20, 2010

Stockholm Syndrome

Everyone is sick with a capital S.

The toddler is taking her inhaler because she's barking like a seal at night. The boogie drainage is out of control.

Hubby is getting better at least, but still congested and napping a lot.

We've managed to infect a relative RN who is staying with us to help care for our elderly relative with lung cancer (she had a large portion of her lung removed this week along with a tumor). Can you say bad timing?

Everyone is sniffing, sneezing, talking like they smoke too much and popping Dayquil and Nyquil.

And I am over here thinking, how am I not sick? HOW?????

Usually if the hubby is sick, I am done for because he only gets sick with new super germs (i.e. he is NEVER sick so if he is sick, it's some serious viral death.) The last time he got sick, I kissed him and ended up puking my guts out which bought me a diagnosis of adrenal suppression.

Sometimes, I am the last to get sick. Sometimes I fight it for weeks before it finally overwhelms my immune system.

I hope that is not the case, but man, am I nervous. Even though I had to take more prednisone than planned, I did just finished completely weaning off the Pulmicort. I will be SO irritated if I have to go back on that shit, you have no idea how pissed I will be about that. Kicking puppies and screaming MotherF*cker pissed (I'll wait until the toddler is asleep/out of the house, don't worry. Actually, I would never kick a puppy, but I might slam some cupboard doors and swear extensively).

Why is it always two steps forward and three hundred miles backwards? Why?

Saturday, September 18, 2010

Anyone Speak Endocrinologist?

I heard back from the endo and was told to not wean too fast because I could crash again.

So does that mean stay on 5mg or go alternate day or what? Because they didn't specify, we are back to vague banalities.

Also, I did wean. In May. This is all stress dose prednisone. What do they mean by wean?

Although I did think my body was acting like it was going through steroid withdrawal from the last 5day x 5mg burst.

But that is, allegedly, impossible since 5mg is such a low dose and 5 days is not supposed to cause suppression.

Then again, we are talking about my extra stupid adrenals.

Which I really want to dig out of my body and smash with a hammer right now.

Except, I suppose, that won't really help me make cortisol.

So I got a response, but that is not the same thing as an answer.

Sigh. I don't know. I am having a hard time keeping my blood pressure up. Thankfully I start feeling like crap right around 100/60-70 so I've been good about getting salt and keeping things stable before they really tank.

(ETA: Hahahaha joke's on me. Now I can't seem to keep the pressure up despite some heavy salt dosing so I just took some prednisone. It's actually dropping further. WTF BBQ?)

Perhaps I need to go back to a daily dose and just taper slowly? Maybe I just need to do what will get me up and running and then taper down from there.

I haven't exercised in a week. The last two days I was So. Optimistic. about exercising only to poop out and need a nap.

In fact, I need a nap earlier than my toddler and it is a special kind of misery to hang on until she's ready to sleep.

This is so frustrating it is driving me to tears. I just want this to end dammit.

Medical Alert ID

I ordered a medical alert necklace and hated it. I would really rather not wear any medic alert jewelry although I understand that people are going to look first for an id on my body. In the past (over a decade ago!) when I had adrenal insufficiency, I clipped a medical bracelet to my purse strap.

Partly because the inquiries as to what I was wearing it for were incessant--people are so nosy!--and partly because I didn't like the bracelet. Even on my purse the attention seemed constant.

And it's not like explaining an allergy. Say the word allergy and there's instant understanding. Same for diabetes or even a heart condition.

But try explaining the mess that is my adrenal system and you rapidly learn people have no clue what the hell the adrenals do or don't do. It just leads to question after question until I feel like I should prepare a handout or something.

I don't really want to lie to people either, imagine if something were to happen? But then I am not really interested in being 'out' anyway so maybe I should tell everyone I have a peanut allergy.

And watch them freak out when I forget the lie and eat peanut butter in front of them.

Sometimes you can't win for losing. Reminds me of when I was pregnant and my boss lied to everyone saying I couldn't travel overseas due to knee surgery (he was trying to be nice since it was early in my pregnancy). Only he didn't tell me about the lie and I blew his cover when people started asking me about the surgery.

Anyway, I took some pliers and cut the chain to the necklace so I could put the tag on my key chain/wallet. Then I ordered a bracelet, that I still won't be happy with, but it's better than the necklace.

Here's what the wallet looks like. The back clarifies it's secondary adrenal insufficiency and gives my more serious medicine allergies, says I have asthma, and provides the hubby's phone number.


I don't expect these ids to see any use. As I've mentioned before, theoretically I should be at super low risk of a true adrenal crisis. However, even if I don't have a real crisis, my blood pressure is dropping steeply enough to be a big problem, especially if I'm out and about. The last time it happened was truly frightening and would've been an ER visit if I hadn't known what to do.

I feel better just knowing if the worst were to happen, the medical ids would be there.

Friday, September 17, 2010

Note to Endo

I hate sending emails to doctors. It seems to easy too cross the line into being a really annoying patient via email. I find I am unsure of when it is or isn't appropriate to email a physician and only one has ever invited me to do so (the weight loss guy who decided I didn't have asthma right after I got out of the hospital ...for asthma). And I never quite know what to say or how to balance the business with the social niceties. (Hmmm, maybe this is a good question for Dr. D.)

Well, the endo emailed me via the hospital's interface about my blood work, but didn't actually follow through on some things we had discussed during our appointment.

I waited a few days to see if they responded to my fax or not and if they would comment on blood work that came in after their initial message.

Nothing.

So today I sent the following note...

"Thank you. Regarding the thyroid antibodies, we had discussed that the results would indicate if I would need to retest every year or every six months. What testing schedule would you like me to follow?

As for the hair loss, if the TSH is fine, do we assume it's related to the adrenals and will it come back as my adrenals finally get their act together?

Lastly, did you receive a fax I sent? If not, don't worry about looking for it. Simply put, I've had some scary issues with the adrenals. Not just fatigue but low blood pressure (90/50), the worst I've been since March. I am now trying alternate day dosing of 5mg with the idea of tapering down to 2.5mg, to see if a slower, alternate day taper is more effective at getting me back on my feet.

If you want me to handle this differently, please let me know.

Eventually, I will be calling for refills and I want to be sure you know what I've been doing over here.

Thanks for your help, I really appreciate your assistance with all this.

Regards,
POP"

So what do you think? Crossing the line? Professional? Did I do okay? I really don't want to piss off my prednisone supplier, you know?

I don't like having to chase people down either, but this seems to be the norm in medicine today. Zero follow-up. The only docs I have that do any follow-up are the dermatologist and the OB/Gyn who was almost hounding me to come back in for some additional testing that was botched earlier.

Ugh. Why can't this be easy?

Thursday, September 16, 2010

Proof of Memory

Just when I'm convinced my brain has melted and oozed out my ears, I surprise myself.

The toddler is starting to play memory and the hubby and I played one night after she went to bed.

And here's the result, which the hubby was none too pleased with. I smoked him good.

Still Crashing

Sigh.

I'm trying to get the alternate day dosing going.

Except my blood pressure is tanking.

I can always tell when it starts. I get sooooo dizzy and light headed. Then I feel weak. Then I feel like I'm gonna pass out.

At which point I take my blood pressure.

It's not horribly low now, but it's dropping. 100/70.

So time for sugar and salt. Smarties and pickles to be precise.

I do wish I would hear back from the endo. Even if it's just some banal affirmation that I'm on the right path/making the right decisions.

As far as I can tell, I'm not going to get sick. I haven't had a sore throat for a while. Then again, the toddler was sick ,then better, then markedly worse. So maybe I'm not out of the woods yet?

Tuesday, September 14, 2010

Oh, Yeah, Forgot About That

For as much as I have moaned about the preschool germies, it's hard to believe I forgot we've got an active bug in our family.

Because I continue to resist the germs. While I flirt with sore throats and congestion here and there, I have yet to actually get sick sick. (By comparison, the hubby is sick enough to be considering missing work, the toddler just has boogies and nothing else.)

But this may explain my last crash. Which is kind of a relief. I do not like the thought of my adrenals pooping out spontaneously for no good reason. That was really scary to contemplate.

Recovery continues to be slow but today was better than yesterday. I'm really fighting the bug now (i.e. the sore throats just started in the last day or two) so that is not helping things at all.

I would like to feel well enough to do some squats in order to preserve muscle mass. Also, would like to be up for socializing. I'm sure all the preschool parents think I'm some sort of Death Metal Goth in Soccer Mom disguise as I've just been huddling in a corner waiting for preschool to be over.

See, the school keeps us locked in a 'fellowship hall' for the first three weeks for enforced adult socialization. So this is the time to network with the other parents, but I just do not have it in me. I know I'm not going to pass out, but I still feel like I'm going to, if that makes any sense and I'm just holding on, just grateful that I'm able to get the toddler to preschool on time.

Also, I am finding the babies especially painful right now. Younger siblings that I will never be able to have. It's just hard to watch. To know I will never be like those other moms. One in preschool, another at the breast.

Hey, I know I got lucky.

Unfortunately luck just enables greed.

Probably I should slink away to my minivan and hide.

Anyway, tomorrow, if the trend continues, will be a better day. Maybe I'll actually talk to someone. One mom has been yapping at me about some fundraiser or another for the last two days, maybe I'll do more than just faintly grimace at her.

In other news, I am experimenting with sugar free gluten free raspberry lemon muffins. They taste good, but look like gray poop. Good thing raspberry season lasts until Halloween here, I have time to get it right.

Monday, September 13, 2010

Pissed Off Unhappy Camper

My blood work is back.

The good news? I've pretty much resolved my anemia tendencies although there are some small markers showing my red blood cell production is still not optimal.

The bad news? I tested positive for thyroid antibodies meaning I really do have Hashimotos.

Which, I had kind of hoped that test would be normal and I would be the lucky recipient of a get-out-of-jail-free card. But no.

In theory, Hashimotos is no big deal--at least all the experts say so. But I am still pretty bummed to confirm my thyroid is slowly being destroyed and there's nothing I can do to stop it.

Why do things have to keep going wrong?

I also sent a fax off to the endo regarding the latest adrenal craziness. I don't expect them to do much, but I don't want to be over here doing strange things with prednisone behind their back either.

My latest idea is to try an alternate day dose schedule for a while. Once I stabilize I mean, which I have yet to do. I'm still feeling kind of rough, but I delayed taking prednisone under some delusion I could just power through this, so I'm just paying the piper. Also I think I'm giving up exercise for a while as it seems to be a trigger.

I have high hopes for tomorrow being a better day.

Or else.

My Toddler's Embryos

Can you believe I used to think infertility was the hard part?

Amazing how perspective can change.

But you know what? Infertility is still hard.

Because I'm still infertile.

An infertile with some serious ethical issues.

Yes, I have issues. You're shocked, I know.

Here's the thing. As I hold my breath, cross my fingers, toes and spleen that the toddler is a-okay, there's more to it than just the toddler.

11 mores to be exact.

Frozen embryos.

For which (whom?) I must determine a fate.

I don't think I'm going to have any more kids. I would love one more child, but I'm getting too old and my adrenal glands are too lazy and I have all those tumors/nodules growing everywhere to deal with. Plus, money is an issue.

--To think I believed when I got pregnant that I had control over my future fertility, hahahahahaha. The universe spits on me and then grinds her stiletto in my back.--

Which leaves embryo adoption, destruction or research.

And hell if I know what I want to do.

Embryo adoption is of interest, but I have to be sure the toddler doesn't have some weird genetic thing. Not that I think she does, but it is an outlying possibility and I don't feel comfortable impregnating other women with my embryos until I know for sure.

Hopefully we'll know by early 2011 when the PT resolves her current challenges. So this is part of what is driving the whole toddler situation--she's got frozen siblings that I need to consider.

Also, there's the asthma factor. These kids are going to have lung issues and, given what I've gone through...ugh, would I do it to anyone else? Again? I don't know. I mean, obviously, I'm doing it to the toddler and it kills me to see her wheeze. Before I got pregnant, I thought I could handle it, now that I'm living it and am currently such a miserable asthmatic myself, not so much.

--Theory, meet Practice. Theory, feel Practice kicking your ass. Theory, here is Practice setting you on fire. Run Theory, run!--

On the flip side, those embryos are my babies and I will have a terrible time knowing someone else is raising my babies.

However, I hate the idea of destruction. Hate.

Research has limited palatability as well, but is better than destruction.

I feel like all my options suck right now, which I take as a sign that it's not time to make a decision. However, I am not really interested in paying for embryo storage into my dotage either, you know?

Sunday, September 12, 2010

Crash

So after I wrote this post, I took a shower and went raspberry picking.

And promptly got sick. Adrenal sick.

Apparently, 30 minutes on the elliptical, a couple squats, a shower, raspberries and a quick retail stop are too much for me.

I was trying to buy birthday invitations for the toddler's party when it hit me; extreme fatigue, dizziness, stomach pain, nausea. I stopped shopping and started looking for a place to sit before I passed out.

Made it out of the store okay and into the car.

Grilled hubby on what to do and say if I collapsed--thank goodness he was with me. Made sure he knew I would need a lot of steroids and asked him to check the dose they gave me. Adrenal crisis should be rare in my situation, but I was scared. Scared in a way I haven't been since my adrenals sent me to the ER in March.

Got home. Started eating salt and sugar. Took my blood pressure, 90/60--not good--and went to bed where I crashed into unconsciousness for a couple hours.

Now I'm up. Tired and not sure how sick I still am, not planning to do anything other than sit on my ass the rest of the day either. Take out for dinner.

The question is, do I need prednisone? Or is this some kind of withdrawal? Although withdrawal from 5mg for just 5 days would be highly weird indeed.

A couple things do need to change though

1. I need a medic id bracelet. If I had been alone...

2. I need to have some prednisone with me in my purse.

3.And some kind of sugary salty snack.

30 Minutes

The toddler's first day of preschool was 30 minutes long.

She now has a case of the green boogies (a.k.a. a cold).

That really has to be some kind of record.

I am fighting it as well and currently winning.

I finished my 5 day prednisone burst to prop up the adrenals yesterday. It worked quite well. One of the things I noticed before I caved to vitamin P (and before the narcoleptic like effects of adrenal suppression made things really obvious) was I couldn't get going on the elliptical. I just couldn't get the rpms up to where they normally were. This was also the last thing to come back. I finally had a great workout this morning, after a couple weeks of suffering through or quitting early or skipping exercise entirely.

So that's good.

Let's hope the germies can leave me alone so I can stay off prednisone.

I have to say I am surprised and demoralized by how sensitive my body is and how fast my energy tanks. I did not think adrenal suppression would be such a hard slog. In my dreams, it was all tra-la-la-la until I got a cold and then I would pop some vitamin P and be fine. Easy peasy, right?

The reality is quite different. I'm afraid to work out too hard. Afraid to do too much. Afraid of preschool. Afraid I'm going to prolong this unnecessarily by just trying to live a life.

Friday, September 10, 2010

Dance to the Beat, Or What Really Sucks About Being Sick

Believe it or not, the video below is the kind of dancing the hubby and I used to do. I was an amateur dancer who didn't have anything close to the physique needed for classical dance (or the technique) so when I met the hubby and he invited me to join his dance troupe....well, how can a girl turn down a pick up line like that?

Folk dance is a little more forgiving on technique and lines than classical dance. Emphasis on little. But I loved it. Absolutely loved it. Nor did it hurt that they were desperate for warm bodies.

Folk dance ain't exactly popular with aspiring dancers. I was alive and breathing, the fact I had some dance background was just gravy. As a result, our troupe was a mix of professionally trained immigrant dancers and people like me who they hoped to mold into a proper folk dancer.

Anyway, we recently saw some other groups perform and commiserated on how much we missed dancing. We used to travel all over. The troupe performed for presidents, went to Canada and Europe to perform.

It was a lot of fun and another thing prednisone and subsequent Cushings followed by Adrenal Insufficiency stole from me. I was eventually asked to leave the troupe due to Cushings weight gain. That and my timing was too slow as I lacked the energy to stay on top of the beat.

Hubby and I both miss it, but, alas, now we are too old, I'm dealing with the fallout of prednisone anyway (some things never change) and our troupe eventually folded for lack of dancers.

Sometimes I wonder who I would be without illness. What I would achieve if I had any stability at all in my health? The fact I have to wonder angers me. The thing about chronic illness isn't that it sucks to be sick, it's that it sucks to never be in control of your own destiny.

Thursday, September 9, 2010

Caffeine Update

A couple months ago I posted how I kicked my Coke Zero habit and yesterday I got a comment asking if I was still caffeine free. Good question and something I've been meaning to bring up. So here's the answer...

Well, no, not really.

I did revert back to Coke Zero after several months of successful abstinence. It started with what seems to be another episode of adrenal laziness that hit me in August. All of a sudden, I could not live without my Coke Zero.

Again.

Sigh.

Now, my beef isn't really with caffeine. I am not opposed to caffeine, just when it comes in a can and is filled with other unknown chemicals. Particularly if those chemicals are byproducts of cocaine, which is what Coke uses; coca leaves imported from Peru. Supposedly there's not cocaine in Coke anymore, but I bet the effluvia of processing cocaine into prescription narcotics (which is what is used now) is not entirely benign either.

I have been successful at limiting the Coke Zero to one a day this time around (vs. the 3 a day habit I was developing before).

Currently, since the weather has cooled, I'm trying to channel my caffeine cravings into green and black tea which have so many health benefits.

But it's a struggle. There's just something about the chemical composition of Coke Zero that my body really likes.

Tuesday, September 7, 2010

Still Amazed

I can't believe how much better I feel since starting prednisone. It is really startling.

I am soooooooo much more active now. It's like the Red Bull commercial, I finally have my wings.

It's hard for me to be bummed about needing the prednisone when I feel this good and can do everything I want to. I keep having to remind myself this is not a good sign, but I kind of don't care--I'm too busy living my life.

Another amazing thing?

I have lost 30lbs eating fudge chocolate muffins.

Yeah, sugar free and gluten free, but very very yummy. People not trying to lose weight like 'em too. I have actually had to hide them from my hubby, various house guests, my father and my brothers.

Of course, the exercise and cutting out carbs helped too, but what made the weight loss process livable? Ooey goey chocolate fudge goodness.

Now to lose the next 20+ lbs and then I'll have to decide how much more I want to lose after that. In my 20s I was 5'10" and managed to get down to 150 but that was horrifically difficult to maintain (1000 calories a day, 9 grams of fat--per product labels-- and 8 hours of cardio a week--I was hungry). I don't know where I want to settle now. Something more than 150 for sure. I'm not all that vain. My hawt years are over and even when I'm skinny I'm a big girl (I never got to single digit sizes, for example).

Which is all to say, I'm not really sure what my goal weight is any more. So that is something I will be pondering the next few months. Also, weight loss maintenance which is a whole new project.

Sunday, September 5, 2010

Vitamin P

Started prednisone today and finally began to feel better. Only did 5mg which, I assume, is why I don't have a 100% improvement. Based on past experience, tomorrow's dose should have me back to normal. (Note to Self: Next time just take 10mg and be done with it.)

Turns out I actually had some kind of bug or food poisoning or my adrenals were fizzing out, either way something was going on and it was hitting me very hard.

I think it was probably my adrenals because it was way intense, too intense for a bug.

I just don't seem to be able to handle stress, good or bad. My vacation, I think, probably screwed me up to begin with (lack of sleep, lots of go-go-go, non-stop physical activity), that's when I started to struggle. Then things started really crashing last week.

So vitamin P it is.

Amazing how much better I feel in such a short period of time. From barely being able to keep my eyes open to going to an ethnic festival and polkaing my heart out.

Oh, and doing a 20 minute squat work out and walking 1.5 miles.

Really incredible how fast Prednisone works.

Friday, September 3, 2010

Ice Cream with a Side of Lube

Saw the endo today.

Lost 5 more lbs of what, I assume, is the rest of my vacation weight. So 11 lbs lost since the end of May.

3.33 lbs per month.

Kinda slow.

But still 5lbs down.

Aaaaand after liberal application of lube for the ultrasound, no growth on the thyroid nodules!!!!

When I got home (after a 5 hour office visit) I celebrated with Ben & Jerry's ice cream.

And promptly got food poisoning. Actually, maybe not food poisoning so much as the pill does weird things to my gut and makes me sick every once in a while. I have zero digestive problems off the pill, but on it is another story entirely.

But damnit I am not throwing up B&J.

And I didn't.

Endo ordered some blood work to check the thyroid and some other stuff that I lost track of. We are not testing the adrenals because there's no point--I'm a little foggy on the logic of this--but essentially I'm going to get sick with preschool germs and end up on steroids anyway and we can't test if I keep taking steroids so why bother? I think I have that right in which case I'm a little confused about the whole thing. I mean, I sort of get it, but how/when do we try to figure out if I have a permanent adrenal thing going?

Anyway, I kind of like my endo but I'm still not sure they're the right doc for me. I feel that they listen really well. Even if they aren't responding to everything I'm bringing up, I feel like I'm heard. They are very respectful and took time to show me today's ultrasound in detail complete with thyroid model, but aren't always answering my questions. I'm not sure if my questions are getting lost in the flow of the appointment or if I'm just being side-stepped.

I was also really tired today, so maybe I was speaking in tongues.

Thursday, September 2, 2010

Lost

I am so confused by all this thyroid stuff.

So, with Hashimoto's, like what do I do? Endlessly cycle through hypo and hyper until the thyroid dies and then take medication?

But how often/frequent is hypo/hyper cycling?

What are the long term health effects of that process?

I think I just went through a hypo cycle. If that is even possible.

My hair was falling out. Still is actually.

Pretty awful muscle pain, akin to arthritis and all over my body for no known reason.

My blood pressure was spiking for no known reason.

The blood pressure is the sticking point for me. It can't be good for me to go high and then drop low. Even if the high pressure is temporary, it's not benign. So do I take bp meds preemptively? Then how do I handle the unnatural lows?

There's just not a lot of info on Hashimoto's because the prevailing medical wisdom treats it as a non-issue until the thyroid is in bad enough shape to need meds. I don't think it's as simple as that. Heck I know it's not as simple as that. Little details matter and if I have an active autoimmune issue, there's no way that's benign.

It's like saying because my asthma is controlled on asthma meds, I don't have asthma (I have met docs who think like that too). Just because I don't meet arbitrary criteria for needing thyroid meds, doesn't mean things are great.

I'm just not convinced medicine has all this thyroid stuff figured out.

I am aware of the studies showing that patients who take meds before the thyroid is decimated do better and I believe that is the direction the standard of care will eventually go. Until then, I'm s.o.l.

I think I may be coming out of the hypo cycle or, if it's the adrenals, they are coming back. I still need a nap every day, but I feel better otherwise and am able to do about 80% of what needs doing.

For example, today I will clean the house but not exercise. I'm just short on energy to 'do it all.'

My goal right now is to ask the endo for some bloodwork and to clarify some questions on the adrenals.