Sunday, October 31, 2010
Cut off my hair--I have lost so much I can't carry off long hair. By the way, no make up, no sleep, and under attack from the green boogies of death in this pic so cut me some slack on this one, okay?
Marveled at the glorious Halloween skyline. The colors are all from the setting sun, not from the leaves.
Took the toddler trick or treating. We just did 4 houses, people we know. It was cold and God knows no one at our house needs candy.
Made chicken pot pie for the first time--it was very good, not low carb, but very good. Also, completely beige despite having a ton of veggies in it, including green ones!
Made tentacle pot pie in honor of Halloween (as featured on the Not Martha website).
Baked cinnamon swirl bread with the toddler--the little loaf is hers. Not pictured the upside down pineapple cake made for Grandma's birthday, her favorite.
Made kale chips in an effort to convince the toddler that vegetables taste good. She still doesn't believe me.
Made beautiful pumpkin banana cranberry muffins with ground flax.
The toddlers boogies are going into her chest. I keep thinking I'm better, but can't figure out why I don't feel better and why I still have a runny nose along with random stabbing pains in my sinuses, so not sure what is up with that. The hubby is in the early stages of the green boogies of death and is cranky as hell.
He got the 'I met all my commitments while sick and I have good excuses not to, sorry, but you don't get to huddle in bed all day' speech.
Gee, I wonder why he's so cranky? This is the downside of me being so used to pushing through, no one gets any slack.
Poor guy. Although I have been cooking for him (as you saw) and pushing vitamins. He did get some naps and I took the toddler in the morning so he could sleep in, so I'm not 100% evil.
More like 80%.
Despite the boogies, I did workout yesterday and really worked on the push-ups and sit-ups, managing to make myself so sore today that I passed on working out today.
So a lot going on over here.
I still have a lot to say about medicine, health, and health care, but right now? I am too tired and too busy to compose a big post. Soon though. Very soon.
Thursday, October 28, 2010
2.Penelope: Parenting is the hardest job you'll ever love. If coping with chronic illness is central to a person's life, then it's awfully hard to fit in a kid. I would not want to have an infant right now with the way my health is, because I can't walk away or ignore the health issues I'm dealing with and infants have infinitely expanding needs.
There are no naps with infants. Or really any sleep at all. I can't imagine adrenal insufficiency in that context. Toddlers make it a little easier. Although every kid is different.
And I would add even once the diapers stop and the nursing stops, kids still need an extra $150-$300 a month for clothes, classes, shoes and other necessities. The financial impact of children combined with chronic illness in the face of health care reform in the US is serious and must be addressed prior to conception for everyone's sake.
Our insurance next year is self pay for the first $5,000 on top of the premium.
Who can afford children and medical care with that kind of health care plan?
No one I know, including us.
For your situation, with a traveling spouse, he either needs to shift gears in his career to be home more or you guys have to build up 5 years worth of savings for maid service and a nanny. Money buys you sleep. Time to be sick. Time to care for your needs. It allows him to come home and decompress without being instantly forced to provide a break for mommy. Money = improved quality of life. Alternately, a strong close knit, extended family works just as well, if you have one. We do not.
3.Have Myelin: Grace and humor would be nice, although truth be told, I'm much too cranky right now for either. The signature of the current virus is essentially losing your mind with bitchiness right before the boogies hit. Last night, the hubby was like "Why am I acting like such a jerk? I'm sorry." and I told him "The green boogies of death are coming for you. It's how it hit all of us, big time bitchiness first, boogies later."
On top of that, I am a realist and I am not going to romanticize early parenthood because that just sets people up for failure. I was so happy to have my daughter, but it was still, as you know, a huge change in our lives. It's hard to explain to people who don't have kids how much your life changes once you become a family but I try.
4.Hey Mo, thanks for the support as always. Yes, it's amazing how much dosing needs change with stress and illness. Thanks for the link.
Wednesday, October 27, 2010
No, it's not.
Sick means stress which is bad because my body forgot how to make cortisol, which you need for stress.
So I am back to where I might have to increase the prednisone dose just to cope with this cold.
Why should anyone care? It's just a few lousy milligrams, right?
No, it's not.
Spend some time with Addison's patients and you'll fast learn why.
Osteoporosis leading to broken hips and a degenerating spine.
Bad reactions to steroids.
Never finding the right supplement dose.
Never finding a doctor who knows how to treat adrenal insufficiency.
Actual doctors with Addison's don't fare any better than the average lay person.
The diagnosis is the easy part, the impossible part is living with adrenal insufficiency. It's nowhere near as amenable to treatment as the medical textbooks make it out to be.
If I don't get the adrenals working, the future is uncertain. I will continue to struggle with finding adequate (forget good) medical care, employment may be impossible and my list of medical issues will grow even longer.
There's nothing simple about this cold.
Tuesday, October 26, 2010
QUESTION 1 (this is kind of long fyi)
Penelope wants to know what I think about pregnancy and chronic illness. My answer?
Hell if I know.
Here's the thing, where I am health-wise today is not where I was when I got pregnant. Yes, I was dealing with chronic illness and some severe side effects of fertility treatments back then, but it was different. I was much more functional day-to-day.
And pregnancy was a joyous breeze after what I went through to get pregnant. I savored every second of it, easily the happiest time of my life.
Also, because so much of my health stuff is hormonally driven, the supplemental hormones I was prescribed and the hormonal impact of pregnancy were very positive. It was almost like a cure. I felt freaking fantastic.
Now, the first 1.5 years of motherhood? Were a whole new level of hell by comparison.
I do not do well without sleep.
My baby girl never slept. Didn't even start to nap until around 16 months. Didn't sleep through the night on a regular basis until sometime closer to 2. (We tried everything including the evil crying-it-out method.)
And my daughter was constantly sick once I put her in daycare. Out of 10 weeks in daycare, she missed 5 due to illness.
She has my immune system poor thing.
After 3 days of no sleep and the daycare stomach flu from hell that gave me black eyes from puking for 8 hours straight, I quit my job. I had a great boss (for once), was on the cusp of a huge promotion (which would've involved a ton of international travel, so not very family friendly) and I walked away.
Even though the longer I am at home, the more and more it becomes clear that we cannot survive without me making a full-time income.
So here's what little advice I have.
1. Money. You need lots of money. Not just for medical expenses either. Money buys a part-time nanny who can give you a break to sleep or time to be sick. If you can't figure out how to save money for both baby and for medical care, you can't afford a kid even if your health is cooperative on the conception front.
Save, save save. This is the time to get a second job and save money. We kind of have an excuse because we used all our savings and then some to even get pregnant. We didn't go into debt for infertility but it left us penniless just the same.
2.More money to buy the best quality food you can afford. You may not do organic now, but when your little bundle of joy shows up, you will. Did you know that food prices are increasing at a faster rate than stocks can appreciate? Food costs are the number one thing we struggle with in our budget.
FYI Diapers will cost you between $2,000 to $3,000 over three years even if you use cloth. Pull ups are even more.
Diapers and formula require at least $150 to $200 monthly. If you breastfeed (which I hope is possible for you) it still costs that much between the pump and the milk storage supplies. Whoever said breastfeeding is free needs to have duct tape across their mouth. They lied.
3. A good support system. Who will watch the baby when you need to go to the ER or hospital? You need child care for doctor visits too because at some point, your baby will be too disruptive or outright traumatized by what they see. As I've mentioned in previous posts, the toddler went through a phase where she was convinced they were hurting me with the blood pressure cuff.
It is very lonely to go to the ER by yourself because your spouse has to stay home to provide child care. If you rely on your spouse to be your advocate, you may need to find a new advocate. In the early years, unless you are blessed with a wonderful network of close friends and family, you won't want to leave your baby with anyone but a parent as much as possible. So hello new ER buddy.
4. No job. If your chronic illness is relentless, there everyday, then yeah, you are going to struggle with parenting and working. One of them will have to go and it's much harder to give up your kids than a job. I do work part-time but have lost business and income as my health waxes and wanes. My income is not reliable as a result.
The one exception I can think of to this is if your illness doesn't care about daycare germs. If you can get a cold or the stomach flu and it's no biggie, then you might be able to handle working. I can't take the daycare germs.
5.Be absolutely sure your health issues are not genetic. As I've written before, I thought I could handle a kid with asthma. The guilt I feel now that the theory is reality is a huge sucker punch I never saw coming. I blame myself and feel like I have hurt my daughter with the best intentions--an awful feeling to live with.
6.There are no guarantees. You can do your best, be overly anal and responsible and it can still fall apart. If I knew then what I know now, I may not have gone forward with IVF. I had no idea the asthma would ever get so bad, that I would ever be dealing with SAI again.
This is the ride that is life. No matter how tight the seat belt, you can still get whiplash.
As far as parenting while sick.
1.PBS as co-parent. There will be lots of TV. More than you want. More than experts say is good for kids. We were TV free until January of this year. Now we watch daily, although we've cut back a lot since neither the toddler nor I are so sick any more.
2.Outsource. Sign up for classes and other experiences that the healthy parent can attend with the kids. These provide good stimulation for kids with parents too sick to do much more than the basics. It also gives you a break.
We hired the neighbor girls, for example, to come over twice a week and play with the toddler. I sent her to Gymboree classes with Daddy on the weekend. That kind of stuff.
OH and it goes without saying that you need a spouse who is up for cooking, doing dishes, laundry, diaper changes, midnight feedings. You need a full partner. If your relationship is very traditional, it's going to hurt when you have kids and good luck staying married through the resentment you are going to feel.
3. Work with your capabilities not against them. So, if you are barely able to function, don't try to play soccer. Instead snuggle up in bed and watch PBS shows. When I was acutely ill, just before I ended up in the hospital, the toddler watched PBS while sitting on me for a week straight. I would lay on the couch, she would use my stomach like a chair and we only moved if it was time to eat or pee.
Whenever she sought attention, I responded with hugs which gave her what she needed without me pushing myself to play with her more than I could. This worked remarkably well.
When I am better, but still not up for anything intense, we read books, build towers, paint pictures. Very sedentary stuff.
As she gets older, having neighbor kids her age and older girls (who like little kids as a general rule and make great mother's helpers) means I can have people over to play while I rest on the couch. The tween girls across the street actually come over to our house almost every Friday and host a craft night with the toddlers from the neighborhood. I provide snacks and some financial support, we don't hear a peep from anyone for about 2 hours.
4. Babyproof the sh*t out of your house. We turned our living room in to one big play pen. I could pee or eat or cook or rest as needed without worrying about the baby's safety. This is HUGE and the value of which many parents underestimate, whether sick or not. Not only is life less stressful, you can rest because you know it's safe for baby. Peace of mind is priceless and you get it with babyproofing.
That's about all I can think of parenting with chronic illness-wise. If you have any other questions, let me know.
Ezekiel wants to know why I am tapering. This is an easy question. In theory, my secondary adrenal insufficiency (SAI) is temporary, a result of steroids as opposed to an internal breakdown of the pituitary.
However, given how long my body's version of SAI lasts and how one time it went untreated (got better by just dumb luck, the asthma kept me in steroids and it all just evened out on its own) and how long treatment was delayed this time (adrenals felt like they were on fire and I have a lot more of the serious adrenal symptoms than I ever had before) I kind of wonder what is going on with my pituitary.
So I wean with the faith that my adrenals will come back. However, I've had continual problems staying off steroids and weaning once I'm on them. So time will tell. If this taper doesn't go well, I need to go back to the endo and determine if, this time, the SAI is permanent.
Monday, October 25, 2010
She said dramatically.
Before swearing voraciously.
Where's the starch? I need to work on my stiff upper lip.
At least my students are all sick too so I don't have to work.
To keep you busy while I am stuffing toilet paper up my nose to plug the dam, here's some mommy algebra for you.
My toddler appears ready to give up her nap. Except her behavior still needs some shut eye. How long before her mood and body are on the same page? Please solve for X which represents mommy's sanity. Thank you.
The asthma is being cranky again. I feel like I have a cold. Not sure if I do though. I think it's just asthma congestion.
I need more sleep. Moooore sleeeeeep.
Also, Mondays should be slayed like dragons. Are you with me?
That's all I got for today folks. Sorry. Too dang tired.
Sunday, October 24, 2010
And all I have to say is big and strapping = good...if you are a GUY.
Girls are supposed to be dainty and feminine. I've been a strapping lumberjack of girl since I was a kid. It's not really a weight issue, although not being thin magnifies it (although now I am merely chubby instead of out and out fat due to the weight I've lost thus far).
Also, the demographics were quite unique. There was no height distribution. You were either 5' dainty and feminine...or me. Nothing much in between.
That doesn't happen so often that I've noticed and it just made the fact that I was head and shoulders over all the girls and quite a few of the men stand out that much more.
Honest, it doesn't really bother me except I just felt very awkward as a result. Compounding it, I didn't know anyone and had a hard time connecting with people who were still in their 20s, didn't have kids, and still marked a good party by how much booze they could put away (I don't drink. At all. This means I am NOT fun at parties unless you need a DD). So all of that combined into a mish-mash of not fitting in-ness.
I swear, I am NOT that tall, but I guess all the other tall girls are hiding.
I remember why I don't often go to parties now. Too introverted.
2.We did swing the Halloween party. I even had fun and actually felt slightly less like death warmed over.
It was kind of an odd party for me though.
Full of medical professionals. Doctors, residents, nurses, etc... I'm not sure why we were there, but we know a friend of a friend and everyone loves the hubby, so that's how we got invited to a party full of people we had never met before.
Very nice people.
The hubby and I were the oldest ones there. I was also the tallest, biggest girl. Also bigger and taller than about 90% of the guys.
So that was kind of awkward. I don't mind my size, but if I am almost literally towering over a throng of size zero twigs, I start to feel like I need to be careful where I put my feet so I don't hurt anyone. You know, like Amelia Bedelia on growth hormone.
My friend tells me the first thing people notice about me is my height. I never really thought about it that way, I am not even 6 foot or anything really tall, but last night, I felt really out of place physically.
The other thing was, as nice as everyone was, I could not shake the idea that, based on my past experiences, at least 1/2 of them would argue with me about the asthma diagnosis and none of them would've caught the secondary adrenal insufficiency.
I don't know, it just...bummed me out. Overall though, the hubby and I had a good time. We danced a little bit even though no one else was. Hey, we don't get out of the house much so we have to take our fun where we can.
Okay, gotta dash, we're due to go pick up the toddler. I can't wait to give her a big hug.
Saturday, October 23, 2010
Then the hubby came home, he who has the gift of death sleep. He crashed into bed and began snoring like a dragon with sleep apnea.
So between a rock and a hard place...
I began smacking the hubby on the shoulder and hissing for him to roll over. The toddler started screeching the ABC song like an opera singer with laryngitis and a love of Chinese music scales.
At which point, I actually cried because I was so tired and I knew there was going to be no nap for me.
The hubby was resentful because I made him get up with the toddler. He had no clue I was in the middle of a taper not going well. He doesn't pay attention, he doesn't ask and I don't bother him with it for the most part. When I do tell him, he forgets.
So...the result? Mutual resentment, every marriage's third wheel. Public displays of which are also fun at parties.
This is a problem and I don't know the solution.
Anyway, I took some Nyquil last night and got abut 8.5 hours uninterrupted sleep with another 2 trying to ignore the wailing of the toddler. Note to hubby, you have to feed the littles, they are unpleasant inmates otherwise. Adults can skip breakfast, children can't unless you actually want them to behave like unmedicated lunatics.
So yesterday imploded pretty spectacularly. Today is hurting, the sleep was not nearly enough, I could have slept all day if not for the way my house conducts the shrieks of the toddler straight into my throbbing head. The 3mg taper officially sucks ass.
I overdid it yesterday, I know. I had the toddler out on the town from 9 until 2. Too much for me. But I needed a hair cut desperately, I've now lost too much hair to do long hair. My mother's group sent out a call for help, I showed up. That was dumb.
As usual I was fine right up until I hit the windshield of the universe going 80 million miles per hour. SPLAT.
Now I am trying to figure out how to survive this adult Halloween party the hubby is all hepped up about going to tonight as well as how I'm going to manage the groceries. I was supposed to go last night and couldn't. Thought about trying this morning and can't. Tomorrow will probably be out by virtue of the party.
Can't send the hubby on his own either as I've switched stores and shopping strategies, it would be a financial disaster for him to go by himself right now.
Hopefully I will get lucky and my body will adjust to this taper sooner as opposed to later so I can once again handle the simple things most everyone else does without a second thought.
Friday, October 22, 2010
Man am I pooped.
Once the toddler is finally down for the nap count, I am going to crash into my bed.
I can not wait.
So tired. How is it possible to sustain life and be this tired?
We'll see how I feel over the next few days, but if today is any indication, I may camp at 3mg for another week before dropping down to 2mg.
Thursday, October 21, 2010
"Have you read stopthethyroidmadness.com. What are your impressions of the site. I would think that is an excellent site. Your supplements etc are totally different from their recommendations. It would be nice to know your impressions on that site. My brother has very recently discovered to have Hashimoto's. The advice on there website seemed quite good.
And my answer....
1. My supplements are almost all geared toward dealing with insulin resistance and my cholesterol issues. They have nothing to do with Hashimoto's. My Hashimoto's is in the early stages and is on the very bottom of my triage list. I'm focusing very much on the adrenals and weight loss right now.
Although, your question did remind me of an omission. I do eat my toddler's gummi vitamins to get some iodine in my body. However, iodine is a tricky subject when it comes to Hashimoto's, it can hurt or help depending on the patient. I opted for it because I'm likely deficient.
So, please do not copy my vitamin regimen if you have Hashimoto's. It's not going to do much for you in that regard.
2.I like the Stop the Thyroid Madness site. I don't agree with every single thing over there, but it is a great place to start and there's a lot to learn over there.
I would also suggest looking into Mary Shomon's books and website too. She has a ton of articles on About.com as well.
Wednesday, October 20, 2010
All my life, I knew exactly what I wanted to do, where I wanted to go, who I wanted to be. I always had a plan.
Now, on the cusp of 40, I have absolutely no flipping clue. Part of the problem is my health, I don't know what I'm going to be up for and I'm also kind of burnt out on global business, which was/is my main area of professional expertise. Plus the whole balancing act of health, family and work is completely overwhelming--with a small child and malfunctioning adrenal glands, I am not up for high powered corporate anything. Not like I used to be.
So the article was of interest to me and not nearly as fluffy as I expected it to be. There was actually something to read and ponder there.
I got to thinking about what I'm good at and thought about all the asthmatics I've helped find the right medication, go to the right doctor, and get control of their lungs. I am good at that although I don't expect that this qualifies me for any kind of actual job.
However, right on cue, upon checking my email after lunch, there was an invitation for me to moderate an online support group for asthma.
I wonder if it pays?
With my luck, probably not, but I think I'll take it and see how I like it.
Tuesday, October 19, 2010
And sleep deprived.
And forgetting to eat. Again.
Neither of which help the anger.
I'm angry that doctors don't listen to me.
That I'm dealing with SAI again.
That I don't have a doctor or doctors providing any kind of cohesive care.
I am angry at my pulmonologist.
Who did not listen to me.
Who does not appear to understand adrenal suppression.
I'm angry that I would probably win a bet on who knew more about adrenal suppression, me or the pulmo.
I am angry that I will have to swallow my anger in order to move forward with the pulmonologist, that they will be allowed to think they did it right, when they hurt me much more than they helped me.
I am angry that I probably will need to find a new pulmonologist as a result. Mine is probably one of the better ones. Which is kind of sad to say.
I am angry at the endo who has not objectively documented, in any way shape or form, what is going on with my adrenals.
Meaning the next (and FOURTH) time this happens, no one will listen to me. Again.
I am angry that I had to go back to school and take pre-med classes for almost 2 years to figure out what was wrong with me.
And then insist on testing because again the doctors didn't believe me when SAI struck a second time. At least that time they ordered testing and it proved me correct.
Not that it helps me now.
What is wrong with all these doctors? SAI is not unheard of. Yes my body's version of SAI lasts forever and its course is not textbook as far as I've read, but it's not a huge cognitive or scientific leap to look at my history and go, 'yeah, maybe we should check those cortisol levels.'
Medscape says there are upwards of 6 million people with Secondary Adrenal Insufficiency. Most of them go undiagnosed and are probably okay because their brain obediently starts working when the textbooks say it should.
Or maybe this is where all those people with trendy 'adrenal fatigue' come from. Has science considered that? Huh? Has it?
I didn't think so.
Monday, October 18, 2010
Discover Magazine's November issue has Reckless Medicine. The article is NOT online anywhere that I can find, so I typed up some of the better quotes to share with you.
Less than Half of Medical Decision Are Evidence Based
“A panel of experts convened in 2007 by the prestigious Institute of Medicine estimated that “well below half” of the procedures doctors perform and the decisions they make about surgeries, drugs, and tests have been adequately investigated and shown to be effective.”
Lack of Proper Research Kills More Than 2000 People a Day
“More than 770,000 American are injured or die each year from drug complications, including unexpected side effects, some of which might have been avoided if somebody had conducted the proper research.” Agency for Healthcare Research and Quality
Financial Conflicts of Interest Are Rampant Among Doctors Publishing Studies
“A 2002 study in JAMA found that 87% of guideline authors received industry funding and 59% were paid by the manufacturer of a drug affected by the guidelines they wrote.”
“A report published this year found that authors of medical journal article favorable to the controversial diabetes drug Avandia were three to six times as likely to have financial ties to the manufacturer as were the authors of articles that were neutral or unfavorable.”
Heart Stents Actually Kill Patients
Stenting is not as effective or as safe as medicine likes to claim. “One study, conducted in France and published in 2006 in the NEJM had to be stopped because stenting was killing patients. Another large study out this year found that 6.4% of those receiving stents had a stroke or died within 4 years.”Lack of Critical Thinking in Medicine
“…In many cases, physicians perform surgeries, prescribe drugs, and give patients tests that are not backed by sound evidence because doctors are not trained to analyze scientific data says Michael Wilkes, vice dean of education at UC Davis.”
“Most medical students don’t learn how to think critically,” Wilkes says."
Note: I thought this was kind of harsh. I have seen some seriously scary inabilities to connect easy dots at times BUT doctors are not single celled mouthbreathers either.
Statins Don't Work
“50 men at risk for a heart attack would have to treated with statins for 5 years to prevent a single heart attack or stroke. 98 of 100 men treated for five years would receive no benefit from the drug, yet they would all be exposed to risk of its potentially serious and fatal side effects, such as muscle breakdown and kidney failure.”
Number to Help vs. Number to Harm
“Doctors would have to treat 40,000 patients with strep throat to prevent a single instance of acute rheumatic fever. However, 8 patients would suffer a near-fatal or fatal allergic reaction-the number to harm.”
Companies Manipulate Studies to Turn Them Into Drug Marketing Vehicles
“…concern turned to outrage when two employees of a communications company came forward with documents showing that they had been paid to ghostwrite some of the Tamiflu studies. They had been given explicit instruction to ensure a key message was embedded in the articles: Flu is a threat, and Tamiflu is the answer.”
“There was no proof that Tamiflu reduced serious flu complications like pneumonia or death.”
THEN, as if that wasn't enough, for the one-two punch, we have an article in The Atlantic which is online. Check out Lies Damned Lies and Medical Science.
Maybe some of us pain-in-the-tuckus patients aren't really the problem. Looks like we are right to question question question and research research research.
I look forward to the med blog analysis of these articles.
By the way, do try to read the entire Reckless Medicine article. It's about 6 pages long and full of information. What I posted here isn't even the half of it.
Saturday, October 16, 2010
The weather was beautiful, could not have asked for a better day!
Pumpkin DONUTS!!!!! YUM!
This is my favorite pumpkin ever, in case you were wondering. :) The pic is kind of wonky, I know. I was taking the picture myself and guessing at where our heads were.
Yesterday, she had a run-in with a mean girl that really troubled her, probably because the kid bitch slapped her out of nowhere. As a result, at her initiation and direction (which I found amazing), we did a lot of role playing. I love seeing how her mind works, seeing how the best of our parenting efforts have blossomed.
Today we are off to the pumpkin patch for a super fun family day. Also, there will be pumpkin donuts. Need I say more?
I am totally rocking the 4mg taper.
Looking forward to starting up with the exercise again this Sunday.
I am optimistic. I cleaned the house until the Swiffer wet mops were gone. I made a kick-ass dinner with roasted veggies and goat cheese (drool) and chicken. We read a half-dozen books today, the toddler and I, complete with funny voices for each character (Cat in Cat in the Hat has a French accent by the way). I am having a GOOD time.
Life is SO much easier and fun when you're not infected by the green boogies of death with an overlay of adrenal suppression. Who knew?
Friday, October 15, 2010
Beyond that, I can fit into the next size down of jeans. They are a smidge tight in the thighs and just a teeny bit tight in the waist. The thigh situation means they are not terribly flattering. Not sure how much more weight I need to lose. Probably 10lbs but 5lbs might do it.
I think I'll wear them around the house to remind me of what the priority is (i.e. not carbs!).
So close, yet so far. The really odd thing is the size above is hanging on me. I'm about 5lbs away from losing my pants if I lift my hands over my head. They've become hip huggers and sag so much, I have to wear heels with them or the cuffs drag on the floor.
The toddler has boogies. Again. Sigh. Is this how it goes in your house? Just a constant merry go round of sick? Or is it really the case that she has my immune system, which kind of functions like that of a gnat without a spleen.
On a happier note, I also perfected a recipe for a gluten free low carb pumpkin cranberry muffin. Delish, perfect for this time of year and only 10g of carbs. Gobble Gobble.
And now I'm off to live day 2 of 4mg.
Thursday, October 14, 2010
The asthma has suddenly become very bitchy. I don't even want to say how many times I used the albuterol. It's depressing.
Today is the inauguration of 4mg. May it go well.
Of course, the universe, the nasty ho bag that she is, sent me a student yesterday suffering an acute infection of some kind.
Featuring a fever of 104 F.
My student's parents have incentivized the hell out of getting good grades. So much so that my student dragged their sorry ass to tutoring.
Except, when your brain is on fire, you can't really absorb things like fractions.
Also, HELLO. If your throat is too sore to talk, I can't do much with you. (And Good Lord stop looking for an app that will talk for you on your iphone.There are no apps in tutoring.)
So I had to cut the session short.
Meaning I was exposed to all those germs for no good reason.
Let the record show that I am wearing my Spongebob Shiny Optimism pants (that squeak!) and chanting a silent mantra of "I will not get sick, I will not get sick."
(P.S. Lucky for you those pants are invisible.)
The hubby recently did a number on himself.
He managed to slam his finger in the van door. Hard.
Why, I don't know. He can't quite figure out how he was stupid enough to stick his hand in the door as it was slamming home.
He was in so much pain, he couldn't stand still, on the verge of tears. I have never seen him in that much pain before. This is the guy who walked on a seriously broken ankle that narrowly missed needing surgery and bought him 6 weeks of disability. The guy I had to bully into getting surgery for an avulsion fraction of his finger so he could still pick his nose if he so chose and retain the ability to use power tools without accommodation.
This is also the guy for whom pain triggers an impressive anger response with a side of irrational logic.
In fact we had a screaming match about ice packs. Me trying to get him one, him insisting he wanted to go to bed.
Then we had a screaming match about how, no, you can't go to bed until we look at your hand.
We really don't yell at each other,we're a pretty copacetic couple, so this was pretty unusual. I was very glad the toddler was asleep, she would've been traumatized by the vigorous conversation at the top of our lungs.
The relative staying with us, who does not speak English, and whose worldview is warped like that of Kim Jon Il unless they are pretty heavily sedated, was freaking out. I dread how they will represent the whole thing to the rest of the hubby's family (I never come out looking good in the gossip and have not yet evolved to where I don't care).
By virtue of the hubby's high pain tolerance and the fact it was not able to save him this time, I made him go get an x-ray the next day at an urgent care center (because he has no primary care doctor because he doesn't go to the doctor).
Impressive considering he has an actual dent in his finger. Just looking at it makes me wince in sympathy. The new rule at our house for the hubby is now, if it hurts, you're fine, if it doesn't hurt, you need surgery/disability.
And based on the anger that pain elicits, I am very glad he is so healthy. As it stands, he is going to have a heart attack in his dotage and try to smack the snot out of the EMTs as a result.
Please accept my apologies in advance.
Wednesday, October 13, 2010
Did the toddler sleep through the night?
I could really use some good, restorative sleep.
I did exercise though. I hate not exercising, it has been hard to just sit around and not do much other than feel like my fat was getting fatter. So my thought was to exercise until I taper, then do nothing for about 48 hours until I'm sure my body has adjusted. Then exercise, lightly, until the next taper. Rinse and repeat.
Sounds like a plan to me.
In other good news, this Saturday is looking super gorgeous and the pumpkin patch is still going strong. Since the hubby and toddler got rained out the last time and I was too sick to go, it looks like we are getting a second chance at my favorite Fall activity.
This week is looking very happy. I could get used to this.
I am wracking my brain trying to find a way to do the mummy thing I mentioned yesterday too. There has to be a way. We'll see how I feel with the taper down to 4mg.
OH! And I finally bought a scale and I have lost another 5lbs. How I don't know because there's been zero exercise and I've been eating more--I have prednisone appetite and there was a lot of cake over the weekend. Total carb binge so I know I'm retaining a buttload of water.
On the one hand, I've felt really negative about my weight especially with the lack of exercise. On the other, I noticed my bracelet was just hanging on my wrist and my ring had become capable of just slipping off. So the scale helped me sort all that out and shut down some of the self-abuse.
I'm now back to low carbing and hopefully I'll drop another 20 lbs asap. At that point, I'll be in the home stretch to the current goal weight.
Tuesday, October 12, 2010
Be vewy vewy quiet.
I think I turned the corner.
I only had to use the inhaler once last night instead of the 3-4 times it's been used the last several nights.
That is GOOD.
I have less gunk.
That is really GOOD.
That'll teach me to whine dire health predicitons on the internet.
But shhhhhh. Don't tell the universe. That bitch hates me.
Also, it's not like the toddler slept.
The truth about parenting?
Kids only sleep when you don't want them to. They never sleep when you need them to. Never.
You've been warned.
So the lack of sleep on top of the lack of sleep sucked zombie azz.
Two days of bday parties (hers and the neighbor boy) with no nap and copious amounts of cake turns out to negatively impact sleep in the under 5 set.
You know what I want to do now that I feel so much better? I want to have a mummy musical parade for the neighborhood kids. I have a not scary mummy story I can read for the littles who don't quite know what a mummy is yet. Excess toilet paper to make mummy wrappings. Everyone would bring their own musical instrument and we would make a racket. I think it would be fun. The toddler would love it.
But I need to taper down to 4mg on Thursday. Which means I have to sit on my hands because I will (most likely) have the energy of a comatose sloth.
I am grateful for prednisone, but I also hate it.
Monday, October 11, 2010
Steroid Withdrawal is what happens when you stop taking steroids. It's a pretty immediate cause and effect. Stop steroids and, very shortly, you feel like crap. The hallmark symptom, in my experience, is muscle pain, essentially all over your body. If you happen to work out when it hits, you will find yourself inordinately sore to the point where you won't be exercising again any time soon. That is steroid withdrawal.
It is not dangerous per se, just really unpleasant.
Steroid Withdrawal can also cause low blood sugar and low blood pressure similar to an adrenal crisis, but unlike an adrenal crisis, it's not an emergency. You can treat the problem yourself by increasing salt consumption and eating a few more simple carbs every day.
You should notice an almost immediate improvement with salt and sugar.
Steroid Withdrawal will resolve in a week or two--longer in some cases. The trick is to manage the pain with Tylenol/Advil, eat salt, eat sugar and rest until the worst passes. You should notice a slow, gradual progression of improvement which is a good sign that it's steroid withdrawal.
With regards to the pain of steroid withdrawal: For Cushings patients, who actually have brain tumors that cause steroid-like problems, they often get prescription narcotics for the muscle pain of steroid withdrawal (which is really cortisol withdrawal for them because in Cushings your body makes way too much 'steroid' all by itself, but the symptoms are identical to steroid withdrawal). So the pain is significant. No doctor is going to give you narcotics for this because they rarely have much experience with it, so don't expect that, but realize the muscle pain can be severe and you will still be okay.
The treatment for steroid withdrawal is either time and sucking it up or some doctors will compassionately prescribe more steroids and do a slower taper to give your body time to adjust. In my reading, the doctors most likely to prescribe steroids for withdrawal are Rheumatologists or GI docs. Any other specialty and you are most likely out of luck.
An adrenal crisis is what potentially happens when your adrenal gland function has been suppressed by the use of steroids. Typically, steroid use longer than 5-14 days at doses higher than 5mg of prednisone can result in adrenal suppression.
Suppression means your body is literally not making the steroids you need to function. It forgot to 'wake up' after the prescription steroids stopped.
Which can lead to an adrenal crisis, but just because it can doesn't mean it will. Most people are fine. The vast majority of people are luckier than me in this regard.
For me, the hallmark adrenal crisis type symptoms I have are the stomach/back/flank pain along with nausea, diarrhea, profound lethargy, feeling like I'm going to pass out, shortness of breath, loss of appetite, low blood pressure sometimes with accelerated heart rate and complete inability to function in my daily life.
The dishes don't get done, I can't work, I can't exercise. My life screeches to a halt.
Sometimes people who ask me if their adrenals might be a problem are also working full time, working out every day and regularly cleaning their house. That level of function is NOT possible with acute adrenal insufficiency. There is no living, there is just inertia that sucks the soul out of your life.
While joint pain is listed as a potential symptom of adrenal crisis, I have only ever had serious pain with steroid withdrawal.
As long as I don't have the stomach/back/flank pain AND low blood pressure, I figure I'm okay. When those two pop up together, I get worried.
So that is the difference between steroid withdrawal and an adrenal crisis.
In March after being in the hospital for asthma, I immediately had steroid withdrawal symptoms once I started an alternate day taper. I actually ended up in the ER because, while I knew all about suppression, I was not yet familiar with steroid withdrawal. I thought I was suppressed (which I was but it wasn't possible to know that yet unless someone ran the right tests, which no one did) when actually I had withdrawal symptoms.
Things later crossed the line into potential adrenal crisis when the back pain started. It felt like someone was holding a blowtorch to my kidneys. The heat in my body was intense, unlike anything I have ever experienced.
If I had not found a half way intelligent endocrinologist, there is no doubt in my mind that I would've had a true, life threatening adrenal crisis.
The really confusing thing about adrenal suppression (a.k.a. Secondary Adrenal Insufficiency) is that you get to experience steroid withdrawal mixed with the potential of an adrenal crisis. As you stress dose and then taper, you're (potentially) going to go through withdrawal again and again. Which is stressful, which can tax your adrenals triggering crisis like symptoms. It is a vicious and unpleasant cycle.
Most people are, allegedly, not suppressed that long. The medical literature believes that Secondary Adrenal Insufficiency caused by steroids only lasts a month or so. This is utter bullsh*t in my experience. I have had this three times and each time it has been a journey of about a year to get full adrenal function back and then 1 to 2 years after that to fully recover.
It has never been as easy as the medical textbooks make it out to be.
Can Corticosteroids Cause Your Adrenals to Crash or an Acute Adrenal Crisis?
Self Care for Steroid Withdrawal and Adrenal Suppression
Sunday, October 10, 2010
Just in case anyone out there wants to be stupider.
I am now stupider.
So, you know, it works.
I now sleep with my inhaler and the hubby. The inhaler gets a lot more action.
I continue to be borderline sick. Not sick enough for any doctor to care, but still sick enough for unrelenting misery to reign supreme.
This is so awesome, you guys.
My body temperature did manage to creep up from 97 to 98.1 yesterday. I have had the sweats and chills for a while, but no fever which has been confusing me. Turns out that could be adrenal. Technically low temps are only present in primary adrenal insufficiency, but since I am living this, I will take a stand and say it's not quite as black and white as the medical textbooks make it out to be.
Although my baseline temp dropped to 97 for some reason (I assume thyroid--even though my levels are normal, I do have autoimmune destruction of my defenseless thyroid going on even as I type this) earlier this year, so it wasn't like I was hanging out at 98.6 before.
(And no, I don't take my temperature unless I'm looking for a fever, but at the doctor's office on multiple visits last year/this year my temp was 97 and it caught my eye. Then the Hashimotos diagnosis came and it all dovetails quite nicely don't you think?)
Other adrenal patients (please note the plural) I have corresponded with have related stories about having serious infections and never registering a fever. They ended up in the hospital because no one would give them antibiotics.
I don't think that will happen to me. I mean, no, no one is going to give me antibiotics even though I think I probably need them. However I doubt I will end up in the hospital over this.
What will likely happen, if I don't get better on my own or become sick enough to justify an antibiotic prescription, is that this will persist until I catch the next bug and that on top of what is festering now in conjunction with poorly controlled asthma will take me down like Godzilla on a rampage.
Can you believe I had delusions of exercise this morning? Every morning I wake up and think, "I feel better! Today is going to be great!" Seriously, this is my thought process every morning the first 5-10 seconds after I open my eyes.
Then I get out of bed and it goes downhill so fast, my ears pop.
Saturday, October 9, 2010
After it was all over, she said, "Mommy, can I have my birthday back?"
I didn't share with her that Daddy and I were resolved to quit birthdays. We are both so over the hassle of cooking and cleaning for a crowd every year amidst the sick.
Next year, we are thinking of going to a restaurant and just buying everyone ice cream sundaes.
It would be cheaper, not to mention less stressful. Even with me cooking (in years past we had most of the menu catered) it was more expensive than we anticipated (we are on a big frugalizing kick), but everyone had a good time. The presents were legion. The toddler was adorbs. I ate my weight in empty carbs. Now I can finally rest.
My aunt came as well and we spent some time trading medical war stories.
I am trying not to think about what it means that I am able to hold my own in medical ailment conversations with the 60 something demographic.
Probably nothing good.
Anyway, my grandfather was mentally ill. Seriously bonkers. He was institutionalized a few times.
Apparently, at one point, during one of his court ordered stints at a mental hospital,his tests came back showing no cortisol production.
But that is all we know. We don't know if it was related to his brand of crazy. If it was related to the slow growing brain tumor that eventually killed him at 83. If it was a drug side effect. Or if he had some kind of hormonal problem on top of the crazy.
I will say the guy was always tan, but, then again, untreated Addison's is really not synonymous with a long life span.
Soooooooo frustrating to not know. I have no way to find out either. This was all back in the 1970s and the mental hospital has since shut down. Where would I even start to try and find the medical records?
My aunt also encouraged me to find better doctors. She suggested Mayo Clinic or something like that. The support was very nice, more than I usually get from people.
But it is very easy to talk about finding better doctors, another thing to actually do it. When she pressed me about what I was going to do next, I told her "coast." I mean; I have some ideas that I would like to pursue and some pending to-dos, but I kind of just want to set aside the quest for the medical holy grail for a while. Focus on weaning, see if I can actually wean even and go from there.
That's what is in front of me right now; weaning. I need to know if my body can do it. Yeah, I know I was talking big about seeing another endocrinologist, and I took a stab at it and met a brick wall reinforced with titanium rods. It is a temporary dead end and I have a plan, but it is on the back burner for now.
So weaning it is.
Still, it is not lost on me that I'm not quite the typical SAI patient and this is why my grandfather's history nags at me. Most people recover pretty quickly and don't need the years of recovery it takes me. Sometimes I think about all the things the pituitary does and how so few of them go well in my body. How thyroid and adrenal stuff are codependent.
Given that I can't even get buy in on adrenal suppression despite a well documented history of it, I am not holding my breath that a doctor will ever let my medical history niggle at their brain like it does mine.
Thursday, October 7, 2010
I hope and pray that we don't start.
But I think my cold is festering into something else.
I just don't feel good.
Like sinus infection-y.
But I'm not sick enough to go to the doctor.
This happens every year for the toddler's birthday. If it's not me whose sick, it's her. Last year she was puking and then some of our guests canceled because they had H1N1. The year before, I had a nasty cold that knocked me on my ass and didn't let me get back up for three days--very similar to the one that put me in the hospital this year. My mom handled everything
This year my Mom is in the Caribbean. The only 'help' I have is a mentally unstable relative who sleeps about 18 hours a day, lives in my basement and doesn't speak English. See also ' people who are no help.'
Today is Friday so no doc until at least Monday, assuming I will be sick enough for a doc by then. Meaning, the weekend will be a hard slog.
So much to do, not enough health to do it.
Anyway, I suppose it could still resolve and I hope it will, but, I don't know. Except for the congestion, it could even be a veeeery slooooow tanking of the adrenals. All I know is, I just don't feel good. Oh, wait, I already said that. Sorry.
Here's a random factoid: The last time I had a sinus infection, I had an anaphylactic reaction to Cipro. This would be my first full course of antibiotics since then. Almost 2 years. If I hadn't ended up in the hospital with asthma resulting in Secondary Adrenal Insufficiency since then, I would be excited about how long I went without needing them.
The adrenals are holding steady. I haven't formally tanked despite some wonky blood pressure and I haven't needed more than 5mg of prednisone. I have proven it can be done, but don't know what will happen next.
I will be happy if I can manage to make the toddler's bday as special as she dreams it is. I wrapped her presents today during her nap. She is SO excited about her party and this mommy just wants to live up to some high expectations.
Wish me luck.
Can corticosteroids cause an adrenal crisis or adrenal crash?
Short answer: Maybe.
Long answer: Most of the medical literature says it would be rare for an adrenal crisis to occur because the part of the adrenal gland that controls blood pressure is, allegedly, not suppressed by corticosteroids.
If your blood pressure stays normal, you (probably) won't have an adrenal crisis. It's when the blood pressure tanks that you know things are getting serious. My understanding is this is why they believe an adrenal crisis is rare, because your blood pressure should not be affected.
Note that rare is not the same as never.
In addition, there are a few (i.e. minority opinion) references in medical literature saying going off corticosteroids can cause an adrenal crisis. If your last dose of prednisone* was higher than 5mg, you may have a problem.
(*Unfortunately, I am not familiar with other steroid medications, but if you call your pharmacist they can work out what the prednisone equivalent is for your steroid.)
I have also experienced severe blood pressure drops and acute adrenal crisis type symptoms myself even though that's not supposed to happen on paper. So it probably varies from person to person.
The other thing to consider is Steroid Withdrawal which, while unpleasant, is temporary and generally not dangerous. If you have just stopped steroids and have any muscle pain, it may not be an adrenal crisis. It could be withdrawal. I will write a post addressing the difference and post it separately so we don't get too bogged down here.
If you are having issues, feeling like you're going to pass out, feeling weak with all the other symptoms of an adrenal crisis (which I am sure you have googled, otherwise you wouldn't be here) here's what you can do to help yourself.
1. Eat salt. Lots of salt. In fact, if you are feeling bad enough to google 'adrenal' crash' I want you to get up right now, go to your fridge and drink either pickle or olive brine--this is the fastest method of delivery in my experience. Chug it and then eat some pickles and olives just to be safe. If you have hot dogs, eat a few of those, they are very high in sodium. Once you have done that, come back and finish reading for the next steps.
Also, from this point forward, heavily salt your food at regular intervals during the day until you know your adrenal glands are 100%.
2. Eat some sugar. Drink a glass of juice, eat some chocolate, have some cake. Whatever you got. But not too much or you'll get a sugar high. It doesn't take a lot of sugar to raise your blood sugar.
3. Drink some water to keep fluid levels up in your body. Give all that salt you're eating something to retain to keep your blood pressure up.
4. Wait 15-20 minutes and see how you feel. If you don't feel better then either something else is going on or your adrenals are just not able to rally. Try repeating steps 1 through 3 again before moving on to #5.
5.Take some more corticosteroids, if you have any. This should rectify things in a hour or two. If it doesn't, either you need a higher steroid dose OR are too far gone to help yourself and need emergency care OR it's not your adrenals.
Tip: Ask your pharmacist what the "physiologic replacement dose" is for your particular steroid. Knowing this can be helpful in deciding what dose you need when the adrenals start to crash. For prednisone, I have read that the physiologic replacement dose is 5 to 7.5 mg. I try not to take more than that unless I'm having really serious problems.
When you take more than the physiologic replacement dose, you get more side effects from the steroids. Also, more is not always better because it just enables the continued suppression of the hypothalamus-pituitary-adrenal axis which is not the goal.
Note: In a serious adrenal crisis, the more steroids the better, but, for me, if I act fast, the second symptoms start, I have found I can do a lot with just a little steroid. This is a fine line to walk. If you are really concerned or not too experienced yet in how your body is handling things, go for the high dose, but know you'll have to taper longer, go through more steroid withdrawal and it will take even longer for the adrenals to come back.
You will know if the dose you took is helping or not within in a hour or so, you can always take more steroids if you need them. But again, if you are really really sick, it might be better to take a higher dose. It's really your call.
I have been fine doing what I've outlined here, it may not work as well in your body, you know? Be careful.
6.Make an appointment with an endocrinologist or your regular physician to talk about Secondary Adrenal Insufficiency. You need a prescription for steroids and a plan to keep you upright until your body recovers.
You may have to push assertively on this. There are supposedly upwards of 6 million people in the US with Secondary Adrenal Insufficiency due to steroids, but, in my experience, doctors have never met them.
7.Buy a blood pressure monitor so you can track the drops at home. This also gives you more data points to feed your doctor. I also find it helpful to know what my BP is doing, usually once it drops to 100/70 I know I'm starting to have problems and can intervene before it gets bad.
These are the steps that have keep me out of the ER and mostly functioning normally. It is not easy, but it is better than going to the ER.
Now, if you are at the point of vomiting, then you probably aren't on the internet, but if you do end up vomiting after reading this along with all the other adrenal crisis symptoms, you should go to an ER.
Which probably won't know what to do with you, so bring someone who can say the words 'adrenal crisis' on your behalf. If you are alone, write it on your wrist in pen or Sharpie marker in case you pass out. (By the way, you really should have a medical ID bracelet.)
An acute adrenal crisis hits fast and it hits hard. From all the patient accounts I have read, there's not much warning and the window of time to help yourself is pretty narrow. For me, it has been very much a lightning bolt out of the blue. One second fine, the next BAM fighting to stay conscious. You must act very quickly to prevent a complete crash.
People who end up vomiting during an adrenal crisis, often seem to end up unconscious within seconds. So take any vomiting in conjunction with other adrenal crisis symptoms very seriously. Vomiting also makes self care difficult, if not impossible, which means it's automatically ER time; they can administer sodium, sugar and steroids that will improve things via IV.
The main goal is to take care of the problem before you ever get to the vomiting part. Adrenal stuff is pretty unusual and your ER may have never seen an adrenal crisis before. It's much better to deal with it early so you can stay home and out of the ER.
However, obviously, you should use your own judgment about when to go the ER. This is just a blog post, it has no idea how you feel, so don't take this as anything more than a guideline.
Good luck. I hope this post helped.
Steroid Withdrawal vs. Adrenal Suppression: How to Tell the Difference
If you don't like that, try this. As measured by gross domestic product, obesity is a win-win-win situation. The more you eat the more you add to GDP and the profits of businesses. If the messages of advertising and marketing make you self-conscious about your overweight, everything you spend on fancy diets, gym subscriptions etc adds to GDP.
And then when you damage your health, everything you, the government and your health fund spend on trying to keep you going adds to GDP. Even when you die prematurely that won't count as a negative against GDP, although the absence of your continued consumption will be missed."
Wednesday, October 6, 2010
Here's the abstract from the The International Journal of Applied and Basic Nutritional Sciences.
"Concerns that were raised with the first dietary recommendations 30 y ago have yet to be adequately addressed. The initial Dietary Goals for Americans (1977) proposed increases in carbohydrate intake and decreases in fat, saturated fat, cholesterol, and salt consumption that are carried further in the 2010 Dietary Guidelines Advisory Committee (DGAC) Report. Important aspects of these recommendations remain unproven, yet a dietary shift in this direction has already taken place even as overweight/obesity and diabetes have increased.
Although appealing to an evidence-based methodology, the DGAC Report demonstrates several critical weaknesses, including use of an incomplete body of relevant science; inaccurately representing, interpreting, or summarizing the literature; and drawing conclusions and/or making recommendations that do not reflect the limitations or controversies in the science.
An objective assessment of evidence in the DGAC Report does not suggest a conclusive proscription against low-carbohydrate diets. The DGAC Report does not provide sufficient evidence to conclude that increases in whole grain and fiber and decreases in dietary saturated fat, salt, and animal protein will lead to positive health outcomes.
Lack of supporting evidence limits the value of the proposed recommendations as guidance for consumers or as the basis for public health policy. It is time to reexamine how US dietary guidelines are created and ask whether the current process is still appropriate for our needs."
Put that in your pipe and smoke it.
We wonder why people are fatter than ever? Because they keep listening to the experts who tell them to eat carbs and cut fat.
Then doctors smack the obese around with the old 'personal responsibility' stick to their face during appointments and on their blogs, as the general public cheers them on.
When history looks back on this time period, it will not have good things to say about how medicine interpreted or implemented nutritional science. Nor about how the obese were treated.
Tuesday I started hitting the wall with some dizziness, fatigue and wobbly blood pressure that required more pickles than I wanted to eat to stabilize. Also some minor wheezing and hacking that kept me up a good portion of the night.
Today is my last 'big' day of the week. Normally, I could chill and recover after this, but this week I have to gear up for the toddler's bday. So no recovery time. Which may mean bumping up the prednisone.
At least no one started puking.
I gave up on trying to make a bday cake and will go to the bakery to order it today while she's in preschool. I still plan to cook for 20+ family and friends. I am pretty sure I can do it.
If I can manage the preschool run and work and blog (incessantly, I know, because I don't feel up to doing anything else), I can cook a slow cooker dinner and throw together some sides.
That's all I got. Go read the Methacholine Challenge post below. That will keep you busy.
Tuesday, October 5, 2010
"I too fall into the peak flow readings of way above average. So, because of this and even when feeling bad I still managed 110% of predicted on PFTs, and a methacholine challenge test that was originally read as "yes, you do have asthma" (that's what that pulmo told me), then 3-4 weeks later he changed his mind and said it was not indicative of asthma.
Add to all that, my current pulmo (who's actually not bad) keeps telling me that he doesn't think it's asthma, but keeps putting the diagnosis every visit as "asthma". I had to push for trying symbicort, which we discovered really helps me, and for trying singulair again...
Ok, for one more question.... about the methacholine challenge.... could you expand on that?"
So here goes, the methacholine challenge... It is not my area of expertise, I barely paid any attention to it until the asshole allergist tried to kill me with it.
I tried not to write a book, but you know what? There's a lot to this stuff. Hopefully I made it an entertaining read.
The Basics of the Methacholine Challenge
The test itself is relatively simple, if a bit of a workout. There's a lot of heavy breathing.
There are nose clips involved too which are not so fun, or at least I don't like them. You breathe in and out of a tube with varying levels of super human effort at the direction of a respiratory therapist who doses you with an odorless tasteless irritant until your lungs react.
Feeling a little light headed is common.
Asthma can be triggered too. I had a big spasm of something in my lungs during my supposedly negative methacholine challenge.
Aside from the tube, some places actually have a 'gas chamber' you sit in and they gas you and see how your airways respond. I had the chamber the first time around.
After the test, you either get a rescue inhaler to take or a nebulizer treatment to reverse the effects of the challenge. You should be fine to go back to normal activities, but, in my experience, the asthma exacerbation can persist a bit past the test.
A Positive Methacholine Challenge Means Nothing
A positive methacholine challenge is indicative of asthma, although doctors are cautioned to not jump to any conclusions since, apparently, it still could not be asthma. Here's what they are looking for in terms of asthma:
"A positive test is defined as a decrease from the baseline forced expiratory volume in the first second (FEV1) or of the postdiluent FEV1 value of 20%, or of a decrease in specific conductance of 35-45% from the baseline or post-diluent value." (Source: AARC Clinical Practice Guideline)
FEV1 is kind of like a peak flow measurement. So just like your peak flow/lung capacity drops when you are sick, the FEV1 will do the same when they dose you with enough irritant.
So when you see your doc after a methacholine challenge the question you ask is, "How much did my FEV1 drop?" AND then you get a copy of the test and immediately tattoo the damn thing to your chest so it's the first thing they see in the ER.
When a doctor says the methacholine is positive, but then also says you don't have asthma,well they are mentally challenged. Why? Because, with few exceptions, other causes for a positive challenge are nowhere near serious enough to result in ER visits and the misery of asthma. Here's a list of what other conditions may result in a positive meth challenge:
-COPD (which is like asthma's hot twin sister)
-Active respiratory infection
-Congestive heart failure
These issues, in my limited experience, have alternate diagnostic methods and a unique progression that is different from asthma. They would not look like asthma for very long before other symptoms or complications appeared.
I am actually kind of underwhelmed about the coughing and smoking. I mean, really? Are you people serious? You can be a smoker and have asthma. You can have a cough as the primary asthma symptom. I don't know, this is just weird.
As for COPD, it is treated with many of the same meds as asthma anyway. The issue becomes more about refining the diagnosis and picking the right therapy than denying care. At least that's my uneducated take on it.
I could pick and pick and pick at this list and why it should not seriously complicate an asthma diagnosis, but it would take too long. Just let me reiterate that I am underwhelmed with medical science here.
The differential diagnosis list for asthma is a bit more impressive by comparison. That is a scarier list with things like pulmonary embolism on it that you definitely want ruled out. The asshole allergist pulled a few items off this list, that were life threatening, and told me that could be my problem. Then she sent me on my merry way with no follow up care which was unethical and negligent.
That was the point I started documenting the asshole allergist's crazy and told my husband who to sue if I up and died.
Negative Methacholine Challenge & False Negatives
Now, a negative methacholine challenge means you will never ever have asthma. Ever. Plus, you are a big fat fatty faker hypochondriac. Except when you're not and when you do have asthma.
The test is not perfect, despite what doctors may think. False negatives do happen. Some people's airways are just funky, but good luck getting any doctor to agree on that point.
The methacholine challenge can also be f*cked with. In my experience, the results can be affected by poor pre-testing instructions regarding when to discontinue medication.
Inhaled steroids can stay in the system for a while. In fact science isn't sure exactly how long they persist after you stop taking them. If you aren't off steroids long enough (inhaled or oral), the methacholine challenge will be a bust. Long acting bronchodialators require abstention for up to 48 hours or they can affect the test. Medications like Singulair should be discontinued 24 hours before the test. Other medications have a different abstention schedule which you can view in the AARC Clinical Practice Guideline linked above.
The National Jewish Center for Immunology and Respiratory Diseases (the experts in asthma) makes the same recommendations.
Other individual doctors have different approaches. I've seen some that say to stop inhaled steroids for just 12 hours prior to the test, but they are not large, cutting edge research institutions and I would end up arguing with them if I was their patient. They would not like me and I would blog mean things about them.
What happened with my last methacholine challenge was the asshole allergist did not properly instruct me on when to discontinue my medications. I only missed one dose and was without medication for only about 9 hours in total. That's like sleeping in on a weekend. It's zero risk.
Today, I bet the test would be positive anyway because my airways are so reactive now, since March. However, back then? I was stone cold controlled. There was no way, no how that missing one dose of my meds would've done anything, not when my control was so good.
I was also taking a pretty good dose of inhaled steroid, 1000 mcg a day and it is well established that regular use of inhaled steroids decreases airway sensitivity. Which can muck up a test that relies on airway sensitivity.
When I raised holy hell with the HMO and pointed out the AARC guidelines, they admitted the protocol was not good and offered to do another test with another doctor. I ignored them because, as I've mentioned before, I was so disgusted I refused to have anything further to do with them.
If I had it to do over again, I would've made sure I was nice and sick when I showed up for the test. Stopped my meds a week earlier, that kind of thing. Just so there would be no doubt. Although it's a risk to take when you are the primary care giver of a small child and need to be healthy.
When I had the test years and years ago, I wasn't on any medications like Advair or Singulair yet so it was not a big deal. If memory serves, my FEV1 was kind of borderline at 17%, but I somehow had a decent doctor who decided I had asthma anyway (thank goodness). Probably because she could hear me wheeze and creak without a stethoscope.
By the time your lungs creak like a haunted house, doctors are a bit more on board with asthma.
The only problem is getting sick enough for them to Get A Clue. Also, remember the diagnosis is non-transferable and they can change their mind at any time. Which sucks. It happened to me and it can happen to you.
I have no idea how patients can protect themselves other than to keep looking for a doctor, get copies of medical records and to scream and yell, hop up and down until doctors realize it's more dangerous for them to deny treatment than to continue it. Also, hoard your medication, that saved my sorry ass when I was battling the asshole allergist.
Anyway for more information, this article goes into how the challenge is used to rule out asthma and why the test is not considered diagnostic. I could spend hours picking it apart, but I won't. Suffice it to say I have a really hard time believing congestive heart failure is such an elusive diagnosis that it would cause patients to be parked on asthma for years and years.
The kicker about this article is that 'asthmatics' don't seem to get a positive result almost half the time. The assumption is then made that the patients must have something else, not that maybe the test is not really effective. False negatives are mentioned, but not elaborated on, which is unfortunate. This author, in my opinion, has a bias that would hurt patients like me.
However, here's a great quote on false negatives with the methacholine challenge from the American Thoracic Society. It's in medicalese, so you need to look at it funny to properly read it.
"Three factors should be considered before accepting a negative test as ruling out asthma: (1) airway responsiveness may have been suppressed if the patient was taking intensive antiinflammatory medications prior to the MCT. This issue may not be relevant if the patient has current symptoms; (2) in patients without current symptoms, the season for aeroallergen exposure may have passed (173, 174); and (3) a small fraction of workers with occupational asthma due to a single antigen or chemical sensitizer may respond only when challenged with the specific agent."
The Mayo Clinic Internal Medicine review on asthma and the methacholine challenge is also a pretty good read. Oh hey, look, this book is used to study for the boards, it says the test gives pretty high weight to pulmonary medicine meaning doctors really do study this stuff (unlike the poor, neglected adrenal glands).
Except I notice the review does not explain how to properly prepare a patient for a methacholine challenge nor talk about false negatives nor how patient history still matters. I would assume, however, that this was covered by HMO policy staff and at some point during the asshole allergist's training. Or maybe that's just expecting too much.