Friday, April 30, 2010
That was the gross bit. Now for something else.
The lesson I took from yesterday is I can't do anything and expect to feel well. Or rather, I may choose to do ONE thing after which the rest of the day will involve laying prone, panting for air and feeling like I'm going to pass out. Plus using the rescue inhaler when the asthma flares from the strain. Even sugar doesn't help any more.
This is ridiculous. The internet says I should recover from steroid withdrawal anywhere from 2 to 7 days up to several weeks.
The thing is I HAVE A LIFE.
A life, that as flexible as it is, has a hard time accommodating the ONE THING ONLY limitation.
A life that can't wait forever. Involving people who depend on me. And a small business.
I need to parent, to cook, to clean, to work and, apparently, I can pick just one of those a day. I have not cleaned anything in 6 days. I haven't cooked since I was taking 10mg of prednisone daily--I'm actually throwing out food. Exercise is almost 9 days gone.
I am seriously going to miss some work deadlines at this point--I am too tired to turn out quality work right now and am behind as a result--on top of being behind when I was sick before. With tutoring, I've already lost one student. I still may have to give up the other.
Being self-employed means I don't get FMLA or disability or paid vacation time. I either work or I lose income.
I need the energy to be productive.
I want to call and say this to the pulmonologist on Monday. It seems extreme to me that I am so incapacitated. I'm all for powering through and goodness knows I hate prednisone,but right now I'm losing more ground than I ever gained. I'm going backwards in material ways and it needs to stop.
Having asthma was better. I knew I should've just stayed home.
I tried it her way and, who knows, perhaps without the stomach flu, it may have been okay. But I am not okay now and I do not see positive change other than the muscle pain has calmed down. Even that is only a partial victory as I still have painful spasms any time I stretch or extend a limb--enough to keep me up at night.
Hopefully this weekend will bring about a miracle, but, if not, come Monday I'm going to have to become much more assertive about what's going on.
Which hahahaha, the joke's on me. If I can't hack a trip to the mall, how am I going to show up for blood work? That should be interesting.
The pain has improved. I'm so happy to not be French kissing the toilet any more that I feel pretty good. Falsely so as it turns out.
First we went to Borders and bought a bunch of books for the toddler as well as a birthday gift for someone else. The toddler was age appropriate in her behavior--distract-able, mostly not listening, but responsive to coaxing and some bribery.
That ended when we went to the mall.
I explained the agenda to her, store, train ride, potty, home.
She repeated it back to me.
I thought we were good.
We were not.
She began channeling Linda Blair the second we set foot in the mall.
Coaxing didn't work.
Bribing didn't work.
Things deteriorated into momma (that would be me) saying things like "You can walk or I'll help you walk, those are your choices."
Of course the toddler choose being 'walked' by momma, which involves me holding her arms and hustling her along. She thought it was great fun and laughed the whole time.
I did carry her for as long as I could at one point, but am not strong enough still to manage 500+ yards with her in my arms. A key point to keep in mind any time I start feeling ambitious in the future.
Then she started screaming 'ow' and favoring her arm. I stopped, I looked her over, couldn't find a problem and decided whatever it was we would deal with it later. I hadn't touched her arm other than the 'walking', which had occurred 5 minutes previously with no comment. But she's not a faker that I've ever seen so something must be wrong.
The parking lot was a similar exercise in parental misery. Proving that no matter how old I get, I will never have enough wisdom to where a mere 2-year-old can't run circles around me.
We did the awkward hold-my-hand-damn-it-and-stop-practicing-passive-resistance-as-if-MLK-is-watching dance, which resulted in skinned knees when the toddler went limp. So the toddler was crying. I couldn't carry her. People were staring. I felt like crawling into a hole alternated with the urge to shout 'I am not a bad mom, she's a bad toddler.' Which would be immature so I didn't do it, but it was tempting.
Spanking was starting to sound like a Great Idea. See also, when selling one's children on Ebay sounds Real Good. And also, Where's Mary Poppins when you need her, the flaky bitch?
I have never been so happy to be home in my life. The toddler's arm is fine, thankfully--I don't know what that was about. The knees, well, she got some boo-boo kisses and a looooong talk about how if we cooperate and hold hands, we don't fall and hurt our knees. Non-violent protest is not all it's cracked up to be.
Further, she was informed, we will not be going anywhere any time soon. At least not until I can cover 1/8th of a mile while carrying her. Or she turns 35. Whichever comes first.
Before running the parental gauntlet, I felt pretty good and was optimistic that I was going to be fine. After, I'm beyond wiped and am clearly not 100%. So we are back to where sitting on my ass is easy and makes Doing Things sound good, when I'm really in no position to do anything other than imitate a couch potato.
Well there was another problem (because apparently I can't just have one). This one sent me shopping for support hose in Eastern Europe (where we visited the hubby's family and then returned to Paris).
Something in my leg started whipping around like Indiana Jones' bull whip. It was very bothersome. Whenever we bought internet access at the various hotels, I would Google madly trying to figure out what it was.
Between Google and my basic medical background, the only thing that made sense was a circulation problem of some kind. I knew enough anatomy and had enough experience as a massage therapist to rule out a muscle issue. It had to be a vein. Or the aliens. Either way.
So off we went in search of support hose. Funnily enough, my hubby, a native speaker, didn't know the word for women's support hose in his language but we managed somehow. Not the kind of vacation shopping I had planned on, but amusing nonetheless, in its own way.
The support hose didn't do much and increasingly worried about a blood clot, I started taking aspirin. The flight home, I spent with my leg up on the hubby's lap and taking lots of walks around the cabin. Why I didn't seek medical care in Europe, I don't remember. Oddly enough we even consulted with various doctors while in Europe as we considered doing IVF there, so it's not like I couldn't have said something.
When I went to see my PCP stateside, she felt the pulses in my leg and pronounced me 'fine'.
Bullshit. I mean, I respected and liked this PCP, but no, things were not 'fine.' And you know how much I like living in 'I'll be fiiiine land.'
I tried to ignore it, to be reassured by my PCP, but it would thrash in my leg like a headbanger in a mosh pit. I couldn't let it go.
From there I found a vein doctor and discovered my greater saphenous vein had bit the big one. So I had a vein ablation.
The vein doctor was a) OMG hawt b)beyond kind c) told me this happens sometimes and didn't necessarily mean a blood clot.
Another doctor told me it could've been a blood clot but refused to do any testing for clotting factors. Another doctor also refused to do the testing for clotting factors, which I always thought was weird. I have PCOS, it's not outside the realm of possibility--about 1/2 the infertiles end up shooting up Lovenox.
Anyway, the vein ablation successfully resolved the issue, but here again, another missed diagnosis. Let's see, how many does that make?
1. Asthma--took 3 years to get initial diagnosis, doctors still argue with me about it to this day.
2.Cushings followed by adrenal suppression--missed the first time, I had to strongly advocate for testing the second time, doctors don't believe me to this day (although now I have a copy of the blood work which should shut them up).
3.PCOS missed for 10 years (although to be fair, I think it took a while for science to catch up to where I was as a patient).
4.Collapse of greater saphenous vein
Will the wonders of modern medicine never cease?
Thursday, April 29, 2010
It would've been nice to hear this from my doctor.
Of course, I have a sneaking suspicion that not many asthmatics have this kind of withdrawal. The 5 day burst is so common, how many asthma patients really end up taking prednisone for 30+ days and how many of those go on to have serious withdrawal symptoms?
My guess is not many simply because I'm treated like an over-functioning worrywart whenever I bring up any concerns, but I'm not over-functioning. Prednisone does weird shit to me. Maybe I wouldn't so hyper about it if someone would actually listen to what I was saying and look at how I went through a year of adrenal suppression with just medium term Prednisone use--similar to this latest episode.
I. am. not. making. this. up. There is a medical history there. Look at it. Please let's not repeat it.
2.What to do about it. I would've appreciated instructions on how to manage the pain and side effects. I don't like guessing or making things up on my own. Some self-care/home-care instructions would've been a huge help. Please tell me how to help myself--if I have a plan, I'm less likely to call and interrupt your day.
3.When is it an emergency? It would've been nice to have a run down of what constitutes an emergency during steroid withdrawal. Also, it may have made my ER trip a bit easier if I'd been aware of steroid withdrawal and been able to communicate that to the ER. I mean, I did ask about the steroids, however, with just a bit more information, I could've not only connected the dots myself, but helped them connect it all as well. Maybe I could've avoided the ER altogether.
4.What to do if I get sick. Everything I've read indicates additional steroids may be necessary during illness. I can see why--the stomach flu was brutal. Please tell me what to do. Should I call you when I get sick? At what point? Please tell me how we're going to work together to manage this.
5.Tell me the asthma can flare up during withdrawal and how you want me to manage it. This was really worrisome for me until I realized it was normal. Typically, I have a 5 day burst of prednisone on hand at all times to use at my discretion during flare ups, imagine if I had started that?
I would have been totally justified doing a 5 day burst too, as peak flows have dropped into the 350 range, which is baaaaad.
So don't leave me to my own devices, I might do something stupid. The asthma action plan has to be modified for the withdrawal period so oral steroids are avoided while also controlling flare up symptoms. I need you to tell me how we're going to manage this.
6.Tell me I may not feel well and may need more rest. Backsliding and going from lots of exercise and normal activity to zero was frightening. I lost all the ground I had gained and am now starting over. Again. This sucks. A heads up would've been nice, not to mention a kindness.
Right now I'm upset. I feel as if I was left to flounder and muddle through without any guidance.
Doctors don't like patients who Google, but, all too often, the patients have no other choice. It's not like their doctors are giving them good information.
After that, everything relaxed. The pain finally improved, but sleep was restless and elusive. I took more Tylenol alternated with Advil throughout the night
I did 2 doses of calcium, magnesium and potassium within four hours of each other before going to bed, which helped. Drank 3 liters of water and some Gatorade (which blech. Anyone remember when Gatorade used to taste good? Now it's like drinking candy. Totally upset my stomach too.).
I also increased the Pulmicort which was my only option aside from breaking out the nebulizer or going back on prednisone, which is not desirable. On top of that, I took some anti-histamines right before turning in.
My understanding is steroid withdrawal can cause quite a bit of inflammation so I like to think the anti-histamines were helpful since the Tylenol/Advil rotation alone was not working. It seemed to be the most asthma free night I've had in a while. No rescue inhaler yet today so that is progress.
Perhaps this is the last of it?
Wednesday, April 28, 2010
Enter the stomach flu.
Whereupon things have regressed.
I stand up. Then promptly sit down as I get dizzy and the world goes gray.
Do a full body stretch and I get a charley horse that extends from my neck down through my hamstrings. I'm afraid to laugh. It hurts.
Advil alternated with Tylenol is not killing the muscle pain.
Because of the blood pressure machine, I know my BP is 90/60 with a heart rate of 110.
I'm wheezing enough that sleep quality is poor, I wake up more tired than I started.
In the kitchen, I find myself at the dishwasher when the goal was to open the freezer. Almost throwing out the chicken instead of putting it in the fridge. Small mental hiccups that make me nervous about how well I'm really doing.
Some of this could be dehydration and I haven't been taking the usual repertoire of vitamins, which would, I assume, help balance my electrolytes, which, I also assume, are out of whack from the stomach flu. I am working on correcting this--my vitamin habit is earning its keep. I also missed some doses of regular meds, which is probably feeding the asthma. I'm drinking water too and some Gatorade.
Plus, I guess I need even more sugar? Because the chocolate ice cream I found hidden in the freezer (by the hubby) is helping more than I thought it would. I feel like all I've done is eat simple carbs all. day. long. When is it going to be enough? I would like to get back to low carbing asap.
What pushes my worry over the edge are the mental lapses. That is not me. I don't forget what I'm doing/where I'm going, not like that.
Maybe tomorrow will be a better day. I've made it this far, right? If the stomach flu in full throttle couldn't pull me under, the aftermath can't do any more damage.
Someone say yes. Please.
PS: Blogger is being a bonehead and I don't know what happened to those other posts. I guess I should know better than to make any promises.
We would've found Bin Laden within days.
If they wanted to find Laden sooner, add in an infant who never sleeps or a very active toddler in a room with a broken baby gate.
Waterborading. Pffft. That's for sissies.
I'm alive (and wheezing unfortunately). Inordinately sore thanks to prednisone's effect on the muscles. Living on Sprite, crackers and today adding kefir--amazingly I have to have the carbs or the blood sugar tanks in a no good, very bad way--I am not used to this.
Taking bets on when this will hit the poor toddler--anyone want to guess? I was about 36-48 hours behind the hubby. So that puts the toddler at Thursday or Friday, but she was also licking my Sprite bottle while I was urmmm 'otherwise occupied', so we swapped spit.
I do have some posts written up that I'll set to publish so the blog doesn't go dead.
Monday, April 26, 2010
Yes, I know it's 2am. How do you distract yourself from GI Armageddon? All we have is basic cable, it's not like I can watch Jersey Shore re-runs all night.
So, tip, don't kiss your hubby when he's been sick. Even if he seems better. Even if you think he's not contagious.
Because I think that's what did me in.
If anyone knows exactly who I pissed off and what I need to do to make amends, I'm all ears.
Please just let this stop. Please.
What I would like to know is...
-How long does it last?
-Is there anything I can do to make it less excruciating?
There is not a ton of info on it that I can find--one of the most cited sources is from the 1980s and claims there is a psychological component. As in I must like prednisone and don't want to give it up. Because....why exactly? Masochism??? I can't see what there to love about prednisone. It's an evil little drug that has hurt more than it has helped.
However, I notice whenever doctors don't know what's wrong, they blame the patient.
It's called displacement, people and it's not pretty. Especially when it is embedded in the canon of medical science.
Fortunately, more recent analysis believes there is a true physiological basis for steroid withdrawal. I guess I don't need to order a whip after all, but I sure would love to find some answers.
If there is anything I can do to help myself, I want to do it. I don't want to be in pain. I don't want to be tired. I don't want to be tapering prednisone for a year waiting for my stupid ass backwards adrenals to figure out which way is up.
I am starting birth control pills to see if that will stop the bleeding. I had been avoiding them because I had harbored secret hope I would be one of those lucky people who magically does better after pregnancy. Some women with PCOS respond really well to pregnancy--as in they go on to get pregnant the old-fashioned way. I am not one of them as it turns out.
I am so tired.
So so so so tired.
My lungs have that raw road-rash-with-a-side-of-rock-salt feeling that I hate so much. The thought of huffing into the peak flow meter makes me want to take a nap first. (And yet I continue to blog like a woman possessed, weird dichotomy. I don't get it either.)
The OB asked me about exercise and I said, "Well, two weeks ago I was doing great. Working out twice a day. Now, with the prednisone taper and withdrawal, coming here is about it for me."
This is temporary, right? My adrenals will come back, right?
There's no way this weird back pain I have by the kidneys on both sides is in any way related, right?
The past does not have to predict the future, right?
At least I can finally take something OFF the to-do list in the side bar.
Whaddaya mean we're not getting prednisone everyday? I'll show you what I think of that, missy.
So now we wait???? And retest in 2 weeks if things don't come back????
The thing that sucks about that is I have to live my life, you know? I have to clean my house (which I'm all for letting things slide when ill but, you know, basic hygiene = important). Cook. Work. Parent.
Forget exercise, I'm just trying to navigate the bare minimum of daily life. It feels like climbing Mount Everest.
Plus, to top things off, I need to baby the hubby who has been sick with some kind of stomach bug. Which, thank God I have not caught that. The last thing I need to be doing is puking. Hubby is never sick and is a typical guy; he can't handle the pain. So he has required lots of TLC at a time when just moving my arms is so. hard. and I keep falling asleep unintentionally.
And I'm confused on whether or not I'm anemic. The ER doc said "You barely have any red blood cells. You're probably anemic." The pulmo is saying "Eh, there are people walking around with hemoglobins of 10 and they're fine. You're not anemic. Don't worry about it."
I don't particularly care one way or the other, but I had been clinging to this idea that maybe the weakness and shortness of breath can be blamed on anemia. If I had my choice, I would much rather have anemia than low cortisol. Actually, I'd rather have neither, but since that is not how my body works, let's pick easy over hard, shall we?
The official prescription is to rest. Take it easy. When I feel bad, have some simple sugar and have someone watch me--if I don't improve call 911 and go to the ER.
I'm home alone.
With the toddler.
Yeah, this is going to go well. *sarcasm*
What a mess, no? Just a hawt mess.
Well, let's focus on the positive shall we?
I can keep my eyes open.
I think I can drive okay.
I don't feel like I'm going to pass out.
That's it, that's all I got.
Post Script: 2010 has sucked for me and mine. Hubby has been sick multiple times and he is NEVER sick--he even went to the doctor of his own volition. The toddler was continuously sick from January through March. I was sick March through April, now going into May.
I told my husband, we may as well shoot for June so it's an even six months.
I actually should pause here to disclose that I forgot to list an ailment on the side bar. I have moles galore. Which is not a medical term. Obviously. I can't remember the medical term because it has about 100 words in it. Hyperdysplasia is one of the words.
What it means is my moles have moles which also have moles and they ALL look abnormal.
I even have multiple moles on the palms of my hands.
So whenever I see a doctor, no matter what it's for, I get a lecture on my moles.
In labor and need an IV? The anesthesiolgoist stopped and scolded me to get my moles checked. (Dude, that was NOT the time, okay? He was an ass, by the way, too.)
Can't breathe in the ER? "You need to get your moles checked."
Random strangers will tell me I need to get my moles checked.
I've even had men reference my moles as part of their pick up game (back when I was younger and hotter).
So, you know, they are pretty alarming/striking. I guess. I don't really pay much attention to them.
I do get the annual mole check. I've worn sunscreen since I was 20, wear sun hats etc...There is some family history of skin cancer, although no one has as many moles as me
My frustration with the annual mole check is no one ever biopsies everything. Here everyone treats my moles as a 5 alarm fire. They get me all worked up, but then nothing happens. It's annoying.
But 2 years ago, I finally had one that was determined to need a biopsy and it did come back as precancerous.
Ergo, I try to keep up with the dermatologist.
And man, this chick was ON THE BALL. Loves it!
She was invested in me, which was super amazing. She heard me. She got me. She was detailed, she believed my history--I had credibility. We were on the same page.
And she was anal to the max, very intense. When I forgot a slip of paper on which she'd written a product name for me to try, she called me not 5 minutes later to tell me so--I hadn't even left the building. I had to actually talk her down and reassure her that I wouldn't forget.
She was more anal than I am. Which is fine with me. She totally deserves chocolate the next time I see her. Call me crazy, but I like it when doctors pay attention to the details.
Too bad my skin issues are minor. What I really need is this level of anal in an endocrinologist.
Sunday, April 25, 2010
As a result, some iodine supplementation is recommended.
But not a lot because my thyroid is "on the edge."
No more than 200 micrograms, I was advised. Further, I must avoid seaweed or kelp at all costs.
Or something baaaaaad will happen. My head might explode or a third eye might pop up. Something.
While I am aware that the patient advocate side of the thyroid debate often urges more iodine, I'm okay with being conservative. No need to drive my thyroid completely off the edge Thelma & Louise style. I still have a lot to learn as a patient here. I don't know what I'm doing and there's a lot of quackery to sift through. So I'm being careful.
However, did you know that almost no one sells iodine supplements with 200 mcg or less? Most iodine supplements are in milligrams too, and in super high doses. The few that are 150-200 mcg are made out of seaweed and kelp.
Errr. Okay. Where does that leave me?
Eating my daughter's Gummi Vites, that's where. Hey, they're handy, they taste good, and if I eat 6 I get 150mcg of iodine, win-win.
I begin to see why the first endo favored multivitamins, they are almost the only source of an appropriate iodine dose as far as I can find. Perhaps if he had explained it that way, I would not have thought he was such an ass (although there were other issues with him).
Also, I'm thinking about ordering some endocrinology textbooks. I am not finding good answers to my questions (whether through my own research or from doctors).
For example, exactly what is the problem with goitergens? What is the mechanism of action?
I have been told to avoid them. I have read that if I am iodine deficient and supplement I can probably eat them. I have talked to other thyroid patients and they all have variable tolerances to goitergens. There's a ton of goitergen 'chatter' but I am not finding anything that explains the physiology. Which I would like to understand because that's how I roll, I like to know.
Also, goitergens are my favorite veggies and I am quite petulant about the idea that I may not be able to eat them anymore. Yes, my love of cabbage, brussel sprouts and broccoli is enough to drive me to slog through medical textbooks.
Hey, I'm the Pissed Off Patient, nowhere have I claimed to be normal.
If you have ever eaten roasted brussel sprouts with shallots, bacon and a shot of balsamic vinegar...well, you understand where I'm coming from.
ETA: Wikipedia has a decent page on goitergens or goitrogens as it is sometimes spelled. The citations aren't fantastic, but decent.
-I hit 800 on the peak flow meter for the first time and had started hitting 600-610 almost daily. (I had a super happy post written up about it too, which was preempted by the 'after' portion of this post.)
-I was up to exercising twice a day and was finally on the cusp of regaining lost ground. (30 min elliptical or aerobics, 1.5 mile walk with dog)
-I was pretty much back into my regular daily life groove.
After the alternate day taper started...
-I began to bleed to death.
-I lacked energy for exercise or simple daily chores.
-Had trouble staying awake--falling 'asleep' against my will. Did not feel safe to drive.
-Seem to have had some blood sugar issues.
-Weak and short of breath (not asthma)
-I felt so badly, I went to the ER.
-The asthma has mildly flared in the last 48 hours and I've lost ground on the peak flow meter. (My sincere hope is that this is just related to the general upheaval in my body and not any real asthma. As in, it will calm down when everything else does.)
I am still tired. The morning yesterday was okay, but then the rest of the day sucked lemons. I don't know what's happening. Hopefully the adrenals are slowly coming back but I am going to be pushy push pushing for some tests.
Saturday, April 24, 2010
There were 3 of them. Anesthesia Residents, young and eager.
Their goal? Do a nerve block via the armpit.
They doped me up by pushing something in the IV and and proceeded to fumble the nerve block.
The kind of fumble I imagine no doctor wants because it was public and the patient knew about it.
The three of them huddled in the corner, whispering with worried looks on their faces. I was high, but not deaf so I heard that they hadn't hit the nerve.
Keep in mind, I was out of my gourd on happy drugs so I was not acting rationally. Speaking up was not on the radar because 00000 Look! I have toes! On my feet!
Despite the drugs, a dark fear began swirling in my stomach. I was afraid I was going to be one of those people who would not only be awake, but feel every cut of the scalpel during the surgery.
So they wheeled me into the operating room. No one said anything. Everyone was pretending everything was fiiiine. Plus, did you know, toes wiggle?
More happy drugs via IV with the intent of inducing twilight sleep.
Except I wouldn't go to sleep.
I was petrified if I did, I would not be able to tell the surgeon when I could feel the scalpel. Keep in mind, this was all in my head. Not once did I say anything to anyone. I can only blame that on the narcotics.
More whispered conferences and worried looks among the anesthesia team. I distinctly heard them saying, "Why isn't she sleeping?"
So they pumped more happy drugs into the IV.
And then more.
Followed by even more.
I resisted and stayed awake. It wasn't that hard actually.
It ended up being a good thing, I think. Because the fumbled nerve block did wear off mid-surgery and they had to use general anesthesia.
However, by the time I could feel anything, I was so doped up I could only moan. I couldn't form words, but I remember the surgeon instantly stopped and asked what hurt. I gurgled out a narcotic laced interpretation of the word shoulder and next thing I knew, the mask was coming down over my face.
I had a hell of an anesthesia hangover the next day. Very sick.
I wish someone had just taken me by the hand and said 'it looks like the nerve block is only partial, so here's how we're going to manage that yadda, yadda, yadda.' That's all I needed. Nothing more than that and certainly not more narcotics.
Instead, I think the residents may have glossed over their fumble? I don't really know, but my impression is that it was swept under the rug. Or maybe everyone knew and it really was okay, but no one explained it all to me? Often as a patient, I notice that everyone else knows what's going on but me, so that could've been the problem. No one stopped to fill in the patient.
Or maybe the pieces parts I saw/heard were out of context. I have no idea, but it was definitely a bizarre experience. Stressful too.
Hey docs, don't let the patients see you sweat and don't be afraid to tell them the truth either. All we want is to be taken care of as patients, a flub is okay as long as there's a plan and the patient isn't left in the dark to assume the worst.
H: What is it that prednisone does again?
Me: Suppresses the immune system.
H: Which stops the asthma?
Me: Yes. Usually.
H:They don't have any other medications? You couldn't take something else that wouldn't screw you up so bad?
Me: I don't think everyone else has the problems I do with prednisone. It's effective. Most people are fine. I'm the weirdo. It seems like doctors never see patients like me.
H:Can't they do anything for you?
Me:I'm going to call the pulmonologist and see what we can do.
H: Why not the endocrinologist?
Me: Remember when I asked the endocrinologist about Cushing's and he said I probably had it already.
Me: Notice how he offered no treatment plan? No 'watch for this and then we'll test to be sure the adrenals are working'?
H: Yeah, but isn't this an endo problem?
Me: Sure, but, if the only doctor listening to me is the pulmonologist, why would I go to the endo who doesn't care? I have to go where the care is--the specialist doesn't matter at this point.
H:Medicine doesn't make any sense.
Me: Yeah. You would think after diabetes, diabetes, diabetes all day endos would be interested in some variety. You would think people would have some compassion or some interest in preventing problems.
H: Guess not.
M:Not for me at least.
Surprisingly I woke up feeling half way decent today. No narcoleptic leanings that I could discern.
Then I looked in the mirror and whoa!
Hey, NASA, here's a moon you can study without going into space!
Yep, my face has mooned out. Hello Cushings. Hate to see you.
I've been slowly piecing things together. The problems started when I hit 10mg of prednisone. Last week was blood sugar nuttiness. I actually had my eyes close on me mid-key stroke of the keyboard. I thought I was tired so I laid down and couldn't wake up, which is not good with a toddler loose in the house.
So I ate some sugar just because and decided to nap with the toddler. Except once the sugar hit my system, I was fine.
So, yeah, I've been having blood sugar issues for the last 2 weeks and wasn't cluing in to what they meant.
I took jelly beans with me in the ER and sure enough, once I ate those, I didn't have as much trouble staying awake. (Too bad I ate them before they tested my blood sugar.) People were talking to me in the ER and I was responsive, but my eyes would just close off and on. I couldn't keep them open no matter how hard I tried until sometime in the late afternoon a switch flipped in my body and it was better. ( I assume cortisol production hit critical mass at that point, but I don't know for sure.)
With the alternate day taper starting this week, I really hit the wall and from how my body felt, the adrenals were not kicking back on like they should've. Yet I, along with everyone else, was so distracted by the bleeding, it just wasn't computing.
But this morning is good. So far. Today is an 'off' day on the taper, but I'm going to tuck a 10mg pill in my pocket just in case. I don't want to muck up the adrenals so if I can get by without prednisone, I will.
If only the bleeding would stop. The progesterone is helping--no bleeding overnight which I imagine is part of why I feel decent today, but it has started up again. Is it possible I need a higher dose of progesterone? I don't know. What I do know is that I am going to have to replace large swaths of my wardrobe after this.
Friday, April 23, 2010
For some reason, this makes me laugh. Not in a good way though. I'll bold all the symptoms I have just for fun.
"Seek medical attention right away if any of these SEVERE side effects occur when using Prednisone:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); appetite loss; black, tarry stools; changes in menstrual periods convulsions; depression; diarrhea; dizziness; exaggerated sense of well-being; fever; general body discomfort; headache; increased pressure in the eye; joint or muscle pain; mood swings; muscle weakness; personality changes; prolonged sore throat, cold, or fever; puffing of the face; severe nausea or vomiting; swelling of feet or legs; unusual weight gain; vomiting material that looks like coffee grounds; weakness; weight loss."
Pool. of. blood. this morning, people. Pool. As in swim. I have exceeded the definition I was given by my OB for 'problem' post partum bleeding by both quantity and time. And I haven't had a baby recently!
So because the red blood cells and other important oxygen related cell thingies were stable, the whole thing was a non-issue.
Which is as it should be, I guess, but here I am still bleeding. So nothing much changed for me. I didn't even get the progesterone shot the PCP told me about.
I did receive a lecture about why low carbing is bad for me, which I neatly turned around and educated ER staff on why someone like me should eat like that. And I explained PCOS. Multiple times.
Emergency Rooms needs to do better with PCOS. Maybe it's not considered emergent, but I would prefer medical professionals actually understand PCOS before deciding if it's an emergency or not. I would avoid awkward conversations where some well meaning health care professional tries to tell me I'll feel horrid on progesterone.
Ummm. No. PCOS is an overabundance of unopposed estrogen and not enough progesterone to act as a counterbalance. Also, I, personally have a luteal phase defect meaning I don't have enough progesterone to sustain a pregnancy on my own.
So yeah, could ERs get their shit together on PCOS? Please?
Also, kindly avoid conversational gems like this one...
"Come back if it gets worse though," they said after telling me heavy bleeding was no biggie.
"I came in because it got worse. I've already done worse. I'm not coming back," I said. "What's the point if the worst bleeding of my life is not considered relevant and all my hormone levels are 'normal'?" (By the way this is the oxymoron that is PCOS.)
I should've just stayed home, powered through it, smeared myself with progesterone cream, and waited for the hubby to get off work and go pick up the progesterone pills. It would've saved everyone, including my family, a lot of time and trouble. But I did that Tuesday and got a 'go to the ER lecture.' I got another ER lecture from the PCP via phone today.
The real irony? The ER wants me to go back to the PCP as well as an endocrinologist and an OB/GYN.
Which, boys and girls, exactly what have I been doing? Going to the PCP. Looking for an endo. Scheduling an appointment with OB/GYN.
And how much help have I had? Anyone? Not much.
I can't fucking win over here. PCOS is a homeless diagnosis. No coordinated care whatsoever.
I did have one epiphany. The narcoleptic I'm-going-to-pass-out-wow-is-it-hard-to-keep-my-eyes-open feeling could be that the prednisone taper is not being well received by the adrenals.
It's possible I have two separate things going 'kablooey' at the same time; PCOS and Cushing's. Neither of which will be addressed in the ER, or so I've learned today.
Meanwhile, since there's absolutely nothing wrong with me, I'm going grocery shopping whether I feel like I can safely drive or not.
Think I'm nuts? Here's another patient with adrenal problems who could not get good care. What is so frigging hard about this? What is the point of endocrinology if they never do anything?
*Ever have a pelvic infection as a result of an IUI and find yourself trying to explain to an ER what IUI or PCOS mean because they've never heard of either term before? I have. I don't think I made much sense though--it was after they administered narcotics via IV.
This was back when I couldn't lose weight no matter what I did, so it was kind of amazing. I totally believe those infomercials that tell you all you need to do to lose weight is do their weirdo breathing exercises. I've experienced it first hand.
(Maybe they should consider inducing asthma attacks as a weight loss method?)
I went to the ER repeatedly. I went to the Doctor (PCP) repeatedly. Nothing was helping. I did not have a pulmonologist at the time so the PCP gave me a referral for one.
He screamed at me.
Screamed at me.
"WHO SAID YOU HAD ASTHMA? WHO GAVE YOU A NEBULIZER?"
I just looked at him. I was fighting too hard to maintain control of my breathing to do anything but blink at him blankly. Inside, I was thinking, "Are you serious? I'm not here to be abused. I'm sick, I need help."
Then they did the pulmonary function tests which showed my airways were down by 50%.
And that shut him up right quick. He changed his tune dramatically and suddenly I was being considered for hospitalization.
But I never went back (didn't go to the hospital either). Instead I complained to my PCP who referred me to my first 'real' pulmonologist. The one who gave me my life back.
The pulmonologist who screamed at me also has third party independent verification of asshole status. Coincidentally, my good friend went to see this jerk. He made fun of her clothes and treated her like absolute shit.
She didn't go back to him either.
I regret that I did not complain about him. By the time a doctor is driving patients away with inappropriate behavior, they are adversely affecting the health of patients. Because now the patient doesn't have anyone providing medical care and it takes time to get in to see someone else--time in which things such as my asthma flare up can go very wrong. Gaps in medical care due to a doctor's bad personality are inexcusable in my book.
I truly needed medical care. What I got was abuse. Not acceptable. Nor do I think I did anything wrong, I was too sick to talk or drive (hubby came with and he was just as appalled as I was).
How could I have possibly triggered this doctor's behavior? I don't think I did.
The weird thing is, this guy was in the system that did the methacholine challenge that was positive for asthma. How was that not enough for him? Or was he phoning it in and hadn't looked at my medical records?
If they are severe enough, they don't heal well.
Bones get 'bed rest' via a cast, they get set. You can have surgery if you need it where they'll pin the bone in place or give you a steel rod. Bone regenerates. A break will heal very fast.
Soft tissue injuries don't have as many treatment options and they aren't immobilized as well as a broken bone, so they don't get much 'rest' to heal. You're left with R.I.C.E and a nifty collection of ace bandages. Soft tissue tends to develop a chronic inflammation response and pain. It heals at the speed of a paralyzed glacier.
Worse, doctors don't really know what to do for soft tissue injuries that become chronic. (Massage therapy can help in many cases, but I didn't know this until it was far too late.)
So my hand doubled in size from the swelling and stayed that way for months. I had problems with it from that point forward. It truly was a bad injury.
By the time I was 25, I had literally lost my grip. I couldn't hold a cup. Couldn't write. Couldn't make a fist and squeeze. Push-ups were out as was carrying grocery bags. Forget opening jars or even stirring--when I baked the hubby would have to stir the cookie batter for me. Handwriting was incredibly painful as was typing. I used the computer mouse with my other, non dominant hand.
I had over a dozen ace bandages and I wore one every day. The pain was constant and it eroded my emotional reserves, wearing me down to the point of tears on a regular basis.
But my primary care physician wouldn't give me the referral to a surgeon or any place else (like physical therapy). I asked. She said no. I asked again. She said no. We did this dance for a year.
Which was incredibly frustrating.
Then my husband happened to need surgery for an avulsion fraction of his finger -- the result of a tag football game gone wrong. I was impressed with the surgeon and wanted him to fix my wrist/hand. (This is a great, albeit unusual, way to vet doctors.)
I went back to my PCP and listed out all the ways I couldn't use my hand. Then I begged, "If it's like this at 25, what will 30 be like? I am going to completely lose the use of my hand at this rate. We need to do something. Please."
I got the referral.
The surgeon ordered an arthogram-- they inject dye and see how much of it 'leaks' through' tears in the muscle (at least that's how it was explained to me)--and it showed nothing.
I was crushed.
I thought the negative arthogram was the end of the road. Especially after having been ignored and poo-pooed by my PCP for so long--maybe she had been right. Maybe I was a big faker too--this is always my default assumption in these situations, that I'm an idiot. Yet oddly enough, I'm the one who is usually right and it's the docs who are missing things. Weird.
Thankfully, the surgeon really was as good as I thought he was. He spent several long minutes palpating my wrist, popping bones in and out of place (everything was loosey goosey in there) and said we should do the surgery anyways. He told me arthograms miss things about half the time.
I was SO relieved. There was still a chance to get my hand back.
They allotted an hour for the surgery, but ended up needing three. For my little wrist! I am kind of tall, but I have teeny tiny hands. So how they found anything to do for three hours in my teeny wrist is amazing to me.
There were some issues with the anesthesia team during surgery (another post for another time) but the surgery went well overall. The surgeon told me I would probably need more surgery in the future because the damage was much worse than he'd anticipated. He'd run out of time to do everything that needed doing. However, more than ten years out from the surgery I have NO complaints. My right hand, on a good day--of which there are many--is at 90-95% which is amazing.
I have no plans to seek additional surgery. I'm good. Also, enough high medical weirdness has happened since then, that I am not anxious to do anything I don't have to, you know?
While my bum wrist was a major factor in my inability to continue with massage therapy, the surgery made a huge difference for me. Let me count the ways...
-I can mostly open jars--I'll always be little weaker than someone with a regular wrist.
-I can carry a full cup without spilling.
-I can carry grocery bags as well as a baby in an infant carrier.
-I can do push ups, although there's arthritis in the wrist and sometimes this doesn't go over well.
-I can cook, but also use a Kitchen Aid mixer to spare my hand. Kneading bread is hard and used to require the hubby's help, but now that I low carb that's not an issue.
-I still sometimes have to switch the mouse to my non-dominant hand and watch how much I type, but that's a minor quibble.
-Handwriting continues to be painful, avoided and illegible anyway because I can't control the fine motor movement very well. Computers allow me to compensate pretty well.
-Breastfeeding was hard because of how much the hands are used to support the baby (and also an anesthesiologist screwed up my other hand during labor-which is another story). I was able to work through that using massage for the muscle tension and the My Brest Friend pillow --which makes breastfeeding ergonomic and takes the strain off the shoulder girdle and arms, much better than the Boppy.
-The overall pain level has been reduced by 95%. It can still flare up at times and there are problems with all the muscles in my forearm up to the elbow, but mostly, I have my wrist and hand back.
It was scary to ask for surgery, but I am so glad I did. This one had a happy ending.
Now I should write up the story about the anesthesia team because it was actually kind of funny. They had a really difficult time knocking me out. All they need to do was say 'it's okay' but somehow they thought the answer was more drugs.
I think I'm in trouble over here.
The plan is to call the NP this morning and just check to be sure giving me estrogen to stop bleeding is the best idea. PCOS is all about estrogen dominance breakthrough bleeding so I'm wondering if we're making things worse?
Because things are worse.
We'll see how far I get with the NP. From there, it's looking like ER time. I don't know if I'll make it to the Monday OB appointment--I think I've lost too much blood. I'm cold right now again and weak, but I haven't started shaking yet so we'll see. I'll be happy if I can hold out until the hubby comes home from work so I don't completely disrupt everyone's schedules for the day.
So...heads up to the ERs of the world and a reminder, as much as I do not look like Selma Hayak, you do not look like Zac Efron yourself. I did my damndest to keep my vagina from offending your delicate sensibilities, but it didn't work so now I need some help, okay?
There are several posts (written a while ago in case you were wondering what my secret was) that are scheduled today so you'll have something to entertain yourself. I think we have the story of my wrist surgery and the pulmonologist that yelled at me.
Update 1: Crap. I'm going to have to go the ER. I'm getting weaker with some dizziness now and don't think I can drive. Not a good sign.
I found this though:
"PCOS results in excess estrogen production and commonly presents as abnormal uterine bleeding." (There's also a relationship with Cushings and since I've been on prednisone for like a month and the last endo said I was definitely suppressed and had exogenous Cushings...)
"Progesterone alone can be used to stabilize an immature endometrium. It is usually successful in the treatment of women with anovulatory dysfunctional uterine bleeding (DUB) because these women have unopposed estrogen stimulation."
WHY did the NP give me estrogen? I even asked her at the appointment but she assured me it was a Good Idea.
It wasn't. Things are so much worse now. I am not happy.
Essentially, unless some bizarre diagnosis comes in sideways to shake things up, I'm going to go the ER for a progesterone prescription.
And I did everything I was supposed to as a patient and I still get fucked over. Damn it.'
I'm going to the ER as soon as I can--the NP called in progesterone pills but said they don't have the shot. The ER has the shot.
I can't carry a conversation without losing my breath and I am very weak. BP is okay (I imagine because I'm so ticked right now). There's no way I can drive to get the prescription right now. I had some natural progesterone cream handy so I've smeared that all over. I took some iron and C as I have been all along.
I asked hubby to cut out as early as he can.
The thing is I tutor at risk kids and I have to get better because I have a student tomorrow. I've already missed so many sessions from the asthma hospitalization. I have to be there tomorrow--this kid is counting on me. If I miss again, I'll ask them to find another tutor because it's not fair to the student. Which is sad, because we get along well. I've got them believing in themselves.
Thursday, April 22, 2010
"Our work suggests that vitamin D enhances the anti-inflammatory function of corticosteroids,' said Dr. Leung. "If future studies confirm these findings vitamin D may help asthma patients achieve better control of their respiratory symptoms with less medication."
This study comes on the heels of another paper by National Jewish Health faculty, which showed that low levels of vitamin D in adult asthma patients are associated with lower lung function and reduced responsiveness to corticosteroids."
"In children with a previous diagnosis of asthma, asthma attacks as a secondary outcome occurred in 2 children receiving vitamin D(3) compared with 12 children receiving placebo."
In 2006, I tried to come with a strategy to better manage my impaired judgment and poor communication skills when ill. I tried to think about what I could have done differently to change my experience in the ER.
I thought about typing up a note that could speak for me, but felt that wouldn't be well received.
Then, I tried to coach the hubby on how to advocate for me. Except he's just not medically oriented. I could lose a limb and I don't think he would notice. It's not that he doesn't care, he does, but health anything is just not on his radar.
So nothing happened other than I made sure I stayed current with my pulmonologist. And I lapsed into complacency, believing I would never get sick again like that.
Then this latest episode hit and I can't be complacent any longer. I have to find a way to mitigate my own stupidity when I'm sick so that I don't delay care and end up in the hospital again. It costs too much money. It means that the toddler doesn't get the attention she needs. I can't work. These kinds of episodes are not limited in scope, they effect everyone in the family as well as everyone in my social and work circles.
I need to manage this better. It is not optional.
The hubby is going to have to step it up and help me help myself when I'm sick.
As a result, he'll be coming with me to the asthma education appointment. He needs to know asthma like I do.
I hope it will end up being as simple as him saying "Do you think you're getting better?" And if I say no, him pushing me to go to the ER. But I can't count on being aware enough to say no, so he's going to have to know about peak flows and objective measures that indicate an ER visit is necessary.
The obvious one is going to be if I've already done 5 days of steroids and nebulizer treatments at home and still don't feel well, I just need to go to the ER already. It's a no brainer. I mean, I look back at that and I just want to slap myself. HOW could I have been so dumb and not realized this????
I compounded my own misery and there has to be a way to ensure that doesn't happen again.
I was 16 at the time. I have no recollection of what prompted the statement, but it stands out in my memory for some reason.
Probably because now look at me... here I am flirting with diabetes and total destruction of my thyroid (you know, just in case asthma + diabetes is easy peasy).
Ahem. I digress. The point is...
This afternoon I was on hold with a doctor's office for an eternity so I was googling to pass the time and found this little study abstract. (The toddler is napping by the way.)
The title alone makes me happy. "Insulin resistance is a poor predictor of type 2 diabetes in individuals with no family history of disease."
Then this: "...insulin resistance per se is not sufficient for the development of diabetes in individuals without family history of disease..."
I have no family history of diabetes. I might have a shot here. I'm trying not to get too excited because it's a snippet, one from the internet no less. Who knows where it lays (lies?*) within the broader context of science, so I'm not truly qualified to interpret it.
But it made me feel warm and fuzzy inside when I read it. Good enough for me!
Oh as for the hold thing...I'm trying to see if I can go back to my RE. Regular endos are too rigid. I need Doctor Cowboy not Doctor By-the-Book. Reproductive Endocrinologists are much more flexible, creative and interested in what the patients have to say in my experience.
Also, I would like to not bleed to death. Which is, unfortunately, still a concern. I am taking the pills that are supposed to stop it. They aren't working. I think I need someone who knows their way around not just the hormones, but the girly bits too and regular endos, well, they don't keep speculums in their offices now do they? Or transvaginal ultrasound equipment.
All the regular endos are totally missing out.
I didn't make an appointment yet, just called to see if I could and turns out I can! I think I will wait to see what happens with the OB, the lump and my blood pressure and decide from there whether I need to drag the RE into this mess or not.
*Yeah, yeah, yeah. I can use the word 'prescient' but can't figure out lay and lie. Sue me.
The RN talked me down when my blood pressure was so low that I thought I would have to go back to the ER. And they listened as I poured out all my concerns in a long, breathless monologue of panic.
The NP is getting me a second opinion on the lung through a colleague at a major teaching hospital--assuming I can get a CD of the CT scan.(Mostly to shut my Dad up who has taken to calling me and shrieking 'you're gonna die and I'm gonna kill your doctors if they let you'--it's like a litany of fear, it needs to stop). She also hooked me up with some diabetes experts who are giving me some recommendations for good endos in my area. (Get this, the diabetes experts say I do not have a 'typical' history--they got me.)
It never occurred to me to ask anyone for this kind of help before. I mean, these folks are all out of town or out of state, I figured they wouldn't know anyone local and I didn't want to bother them.
I am so happy to be proven wrong in that assumption. I have names. I have a direction to go. I'm getting a second opinion. No one thinks I'm a nutty hypochondriac either. For once, I have people who know what they are doing looking out for me.
Now if I could just find doctors willing to do the same.
Cold, shaking and lightheaded the other night, which probably was a bit more urgent than I wanted to believe? Not a problem. Totally fiiiine.
General all around feeling like road kill stuck on a Hummer wheel, which is not an urgent medical problem? I want to huddle in a fetal position today and commune with a very large quantity of Advil alternated with Tylenol.
I feel like I have a blood loss hangover. Is that possible? Also, the pain, is well, painful. I don't usually have pain like this so I'm a baby about it I guess. (Do I redeem myself if I say I labored 8 hours with Pitocin before asking for an epidural?).
Just leave me alone will you? I exercise you. I feed you decent food. I take your sorry ass to the doctor to be sure I haven't missed something. Can you just sit down and shut up? I have a life. I don't have time for this. Grow up already.
Now, where are my big girl panties? It's going to take my biggest pair to slog through today.
Wednesday, April 21, 2010
You want to know what happens to me sometimes?
I turn into a serial killer.
At least it feels like I do.
Then I eat some sugar and begin to feel better.
I had some apologizing to do tonight to the hubby and requested that, any time I behave that horrid toward him in the future, to please offer me some sugar.
Gives new meaning to the old saying 'you catch more flies with honey.'
In other news, I'm still having 'problems'. I am just so over this. If you look at the side bar you can see where I added a section for incoming lab work. This way I won't inundate you with even more posts when lab results come back (I AM posting a lot, but I usually am a prolific blogger. Also, there's a lot going on. When there is not so much going on, I will not post so much. Promise.).
My blood related cells dropped lower than they were a month ago, so I'm quite keen to find the main water valve and solder that thing shut. It would be nice to avoid anemia proper.
You know, I think part of my funk was frustration with my blood work being 'normal'. The hormones are all normal. You would never know I had to do IVF to get pregnant. So frustrating when there's clearly a problem and nothing shows up.
Although, this one time, I had a negative test, but they did the surgery anyways and it was much worse than they ever imagined (the surgeon's words, not mine). I'll have to tell that story sometime.
On the upside, my peak flow meter is not whoring around behind my back. I have no STDs. I'm not knocked up either
(Parenthetical Aside: It is always so funny when medical personnel try to argue with me about being pregnant.
-But you could be pregnant.
-I was really infertile. Like hardcore. Dead people have a better shot at procreating.
-But you could be pregnant.
-Well, if God intervened maybe.
-Okay, so we'll check to be sure.
-Yeah, umm whatever you want to do.
Doing the test is fine, but don't argue with me about it. I am infertile. Pregnancy would be like winning the super lotto, scoring with Johnny Depp and being declared a Saint on the same damn day. Could it happen? Sure. Is it likely? No.)
Anyhoo...the next step is an ultrasound. A prescription of some kind to stop the bleeding. And probably a mammogram.
Oh and another thing. I'm beginning to wonder if I ever had high blood pressure. I think things have progressed to where I'm so wound up just by going to the doctor, that my fight or flight response kicks into gear. I don't know for sure yet. I'm still on prednisone, but the only place I have really high HIGH blood pressure? The doctor's office.
Also, tying me to a blood pressure machine just as the toddler runs off to God knows where and you* do NOTHING to protect my kid is NOT the way to get an accurate blood pressure reading. You trip the momma bear switch and you'll be lucky to have any blood left by the time I am finished with you never mind getting a decent BP reading on me.
Oops. There I go again. Maybe I need to find some more sugar.
*Yes, I know it's not the nurse's or aide's job to watch my kid, but if I'm literally attached to a machine, would you please make sure my child isn't about to kill herself/visit people in the bathroom? The same way any one of us would try to help a baby heading for the street? Thank you.
They say they 'can't.'
Which is bullshit.
I know for a fact the doctor or NP can print shit off and hand it to me. They do it all the time.
God forbid patients be able to facilitate medical care with actual information. Can't have that, bureaucracy trumps health care.
I know better than to think I'll win this one. Red tape is evil. I would love to see some patient friendly laws on obtaining medical records. It shouldn't be this hard to get information to your doctor. (I'm also in favor of electronic records that can be accessed by any physician anywhere.)
In other news, since I was flirting with anemia before, I am now taking iron and C twice a day for a while. I feel like I've faded a bit. Just not as strong as I was. I rested most of the day yesterday and today did a s-l-o-w work out on the elliptical this morning. Hopefully I'll bounce back pretty quickly.
It's not like I can't breath or anything. So I'm not that sick. Non-asthma sick = easy. Usually.
For example, my doctor told me to 'cut back on caffeine' but then offered no information on how to go about it. Doctors need to follow the parenting advice I hear a lot which is, 'tell kids what to do, not what they shouldn't do.'
For myself, I am a huge fan of displacing bad habits with good ones. I find it to be a very effective technique to bring about change.
So when my blood pressure prompted me to start cutting back on caffeine, this is what I did to swap out a bad habit for a good one. It was actually pretty painless and a strategy that I think others might find helpful.
There are 3 steps...
1.Take an Excedrin in place of the Coke Zero for the first 3 to 5 days to manage withdrawal symptoms. Excedrin contains caffeine and painkillers which makes the withdrawal painless. I was inching up to a 3 can a day habit so 1 Excedrin was still a big drop in caffeine intake for me.
2.Transition to caffeine mints (brand name Jolt). 5 mints = one cup of coffee per the manufacturer. I would have 3 mints in the morning and 2 in the afternoon. Some days I had more. I didn't sweat it. The goal was progress not perfection.
3.Make allowances. I allowed myself caffeine free diet root beer if I was really desperate for a fix. Or sugar free popsicles. The idea wasn't to torture myself, it was to change, so if I needed to lean on a crutch to make it palatable, I did so.
Within 3 weeks, I didn't need the caffeine mints anymore. I do keep some on hand for those times I need a pick-me-up after a sleepless night caring for the toddler or tossing and turning while my brain races under the influence of prednisone. I'll also drink caffeinated tea sometimes.
I'm not completely anti-caffeine, I just don't want to be slave to another bad habit or blood pressure problems. I also don't want to pass this habit on to my daughter. Pop is not okay and I don't want to act like it is.
6 weeks later, I finally drank the last can of Coke Zero in the fridge. It didn't taste good at all. I would say that marks this as a mission accomplished.
Although it really didn't do anything for my BP, so in that respect, the whole exercise was a dismal failure.
Tuesday, April 20, 2010
What do I say?
I'm not calling family or friends. I ignore their calls, letting them go to voice mail.
What do I say?
I haven't figured out how to pretend that my life hasn't been consumed by a medical Chinese fire drill. I'm too upset to hide it well.
Everyone knows the basics,what started this mess. The Facebook crowd knows about the asthma ER visit. I can't say anything more. Some of my Facebook relationships are more superficial, more professional, and I can't taint the network with too much information, you know?
My family knows about the lung nodule and the thyroid stuff, but I've stopped talking about anything else. The look on my Father's face earlier this week; pity, anguish, fear for his child, stops me cold whenever I go to open my mouth.
So I'm silent. Avoiding his calls. Thankful my Mother is in another country with horrid phone lines.
I don't want pity. Some empathy would be nice, but I don't want pity. I don't want to think my parents are afraid of what will happen to me. My own fear is enough, thank you.
I am not good at secrets. So instead I disappear.
Going through infertility, I lost one very good friend due to collapsing into myself. A loss I regret to this day. I apologized, but she wasn't interested any more. That's okay, I don't necessarily deserve to be forgiven, but I hope she knows it wasn't her, it was me. I hope she knows I still love her. I just didn't know how to nurture our friendship and keep myself together at the same time.
Now the struggle is to not repeat that experience. To find the 'zone' in my head where I'm just 'me' and not the Pissed Off Patient.
Only you, lurking internet readers who rarely comment, only you know everything.
You're the only ones it's safe to tell.
So the NP I saw today wanted to know if I've been sleeping around.
She must have heard about the STD clinic and the prostitutes I used to hang with. (You have to read a ways in to find the explanation behind that reference.)
I snorted and said, "The only thing I've been making out with is my peak flow meter trying to see if my lung capacity has come back yet*."
She laughed. "Well, we have to ask. Just to be sure."
"A few weeks ago, I couldn't walk and breathe at the same time let alone participate in an extra-marital roll-in-the-hay. So no, it's just me and my peak flow meter."
Another laugh. Made my day! Although reading it, I'm not sure the humor translates. I was quite dead pan in the delivery.
I got another emphatic lecture about ' you should've gone to the ER.' I get it. Just because I got away with not going this time, doesn't mean that I did the right thing.
I truly thought I was good until I started getting ready to go see the doc today. Then I realized how shaky and lightheaded I was. I did almost go to the ER instead of the doc. Almost but not quite.
Have I mentioned I can be stubborn?
You know, I have now had to go or been instructed to go to the ER on three separate occasions in less than a month. This is a trend I am actively fighting. It's not exactly the life I want to lead.
Fortunately everything worked out this time. We don't know what happened, the blood work won't be back until tomorrow. It's probably PCOS hormonal weirdness.
Welcome to my medical freak show of one.
*Did you know this is like my new hobby? Blowing the peak flow meter? And the hubby is jealous because I blow it better than he does. Heh.
Laying down really helped.
Go random medical shit on the internet from completely unverified sources! The next time the Great Internet tells me slurping down Apple Cider Vinegar will cure all that ails me, I will not laugh nor link to Medscape articles debunking this. Promise.
Things are still abnormal, but I don't feel that bleeding to death is imminent. At least not this very second.
Currently waiting for the doc's office to open. And I will call the OB who I haven't seen in a few years and make an appointment. I mean, I had a normal uterine biopsy last year and all the other tests of the girlie bits have been fine so....huh.
There are some previously written posts that should publish today, assuming Blogger doesn't fart.
They have nothing to do with my uterus.
Monday, April 19, 2010
It's Revenge of the Uterus time. Yes, me, the poster girl for annovulatory chastity. The girlie bits have gone haywire and to avoid being graphic, let's just say, it's the worst I've ever seen from the 'bits.'
And I've given birth.
I have NO idea what is happening. My body just continues to spin out of control.
Is this really happening to me? Why?
Well, this will bump the lump up. I'm going to have to go to the doctor tomorrow. Assuming I can stay out of the ER tonight.
No more baby aspirin for me for a few days.
I'm going to lay down on the couch. I read resting helps.
Send me some 'no ER' vibes if you've got 'em.
I literally could not stop myself. It took an enormous amount of will to NOT gorge.
8 chips doesn't sound like a lot (especially considering hubby ate 1/2 the bag in one sitting) but if you look at the label, the chips are pretty high carb even in small amounts. It's enough to derail my low carb efforts and I do feel bloated today.
I told hubby the bag of chips better be out of the house when I woke up this morning. He took them to work. Thank goodness!
I am on day 2 of no rescue inhaler and I'm feeling really strong today. Except super sore in my ribs and legs. The rib pain is all asthma. As for the legs...well,the other day it seemed like a good idea to do 15 minutes of lower than low impact aerobics. I improvised a cardio kickbox routine and did 20 squats. Piddly little workout. There are 100 year old women who workout harder, I'm sure. So nothing major, but here I am in a lot of pain.
I think the prednisone might have something to do with that--it can interfere with the ability of muscle cells to use calcium which impacts contraction. I've had charley horses in the past with prednisone and remember having to be really careful about how I exercised. Strength training was out and I didn't dare make any sudden moves or else things would spasm. This made the elliptical the ideal workout for me--same motion over and over.
In my opinion, I am way too sore for what I did the other day. I actually shrieked when the toddler went to sit on me today. Very painful. I took Tylenol Pm before bed and was up last night at 3am taking regular Tylenol too. I am about to start alternating doses of Tylenol and Advil (aside from the joy of bringing the toddler home from the hospital, this little pain relief trick was a highlight of giving birth).
So today I'll dial it back a notch and maybe take the dog for a walk. Something gentle. And if I can work up the courage, I'll try to massage the worst of it out of my muscles. It works but it hurts. Similar to the choice between ripping the band aid off fast or slow. Pick your poison.
The hubby was there. He said I communicated well and agreed that the doc just was not hearing what I was saying. Hubby even spoke up and tried to help, but we just couldn't break through.
I think it was a fat bias. All doctors believe if I just lost weight, all my problems would disappear. Even my husband, who managed to watch me go through 4 years of infertility treatments without learning anything, thinks this logic is fallible.
If he can see it...?????
So this doc's perspective is that my weight = high blood pressure.
Okay fine. If my weight is the constant WHY did I have to stop ALL BP meds while on prednisone?
What changed? Hint: It wasn't my weight.
I was still fat the whole time I was on prednisone so...?????
Am I missing something? If I am PLEASE tell me. I mean, my PCP gets it, how could a specialist not?
Today's endo admitted my BP reaction to prednisone was not normal, but apparently not abnormal enough for him to want to do anything. (Are there legions of patients out there who have low blood pressure on prednisone and zero underlying pathology? If so, where are they? Google can't find them.)
Other than that, he was professional and courteous and a teeny bit more open to my input than the last guy. Much better communication skills. Still not quite the best fit for me.
Anyway, on the thyroid front, I guess I really do have Hashimoto's. I got a good, rational explanation of why they wouldn't bother to test for antibodies and feel comfortable accepting the diagnosis now. I need to follow up with more ultrasounds for the nodules, be careful not to take too much iodine (I'm not taking any right now) and avoid cabbage (ironically after I just made a week's worth of gingered cabbage coleslaw).
On a side note, the nurse pissed me off by flat out refusing to enter all the supplements I take into the system. Since some of them cross react with prescription medications, I thought that was irresponsible. I told the medical student as much and she had to input them all.
That is a minor quibble, but still WTF? The medical community says 'tell us everything you're taking' and then you're going to say 'no' when a patient tries to follow directions? Grrrr.
Bad nurse. -10 for you.
From here, I'm going to try one more endo and then I give up. I can't just go to the doctor non-stop. I have a life and a lump that needs to be palpated--got to find time to squeeze that in.
If the 4th guy isn't getting it then a) I must be fine and over-reacting and b) if there is a problem, hopefully, it will become glaringly obvious to someone somewhere so I can get the right care and c)I'll just keep asking 'What about the blood pressure and prednisone?'
I'm not going to let them forget.
Note 1:You can read about the first time I had Cushing's here.
Note 2: Today is the day I see a new endocrinologist. I am terrified that I will find no help. That no one will listen to me, again. My husband is coming with, to help keep everyone on track and so I don't just give up and walk away, again. Good thoughts would be appreciated.
Note 3: The picture above is from my actual lab result. I am not super tech savvy so that's why it's so funky looking. (Also I wanted to crop out my name.)
The second time I had Cushings was slightly better than the first in that it was diagnosed. I must add, that the diagnosis came after much pushing on my part. I had finally done some reading and knew that something bad had happened to me as a result of the prednisone in the past. I had no desire to repeat history and was emphatic about being tested.
The blood work came back at 1. Normal cortisol levels start at something like 8.
For a year, we tapered prednisone and did 2 hour challenge tests (have no idea what the official medical term was for the test).
I felt like shit, but having gone through it before, I marshaled my resources. I watched what I ate. I exercised despite some pretty significant muscle pain. I didn't lose weight, but I didn't gain either. I might have lost if I'd known about low carb eating (which is actually recommended for Cushings FYI).
And when they gave me the thumbs up to stop the prednisone, everything went to hell.
I had less energy than a corpse. Actually had issues staying conscious at times. Slept 15 hours a day. Went to work, fought to stay awake (passed out once at work), came home and went to bed. If I laid down, I would essentially pass out. So I had to keep moving as much as possible in an effort to keep myself from falling asleep against my will.
This may seem like exaggeration or hyperbole, it is not. This was literally my life.
God, it was awful. Thankfully, at least I wasn't driving--the hubby took me to work as our jobs were in the same area for the same company.
Dutifully, I presented myself to the doctor and they could find nothing wrong.
By this time, I had also enrolled in some basic anatomy and physiology classes. Doctors practice defensive medicine,right? Well I needed to put together my own special brand of defense. I couldn't count on doctors anymore.
While studying the Krebs Cycle in my A&P textbook, I stumbled upon a chart that listed important vitamins/nutrients related to the Krebs Cycle and ATP production.
A light bulb went off in my head.
If prednisone interfered with nutrient absorption?
And I had been on it for a year?
And on it intermittently for years before that?
And I had no energy, ergo maybe there was something going on with ATP production?
And I wasn't a big vitamin taker?
Given all that, what could pantothenic acid do for me? (Link goes to an article on the Krebs Cycle.)
I bought some that night. Took five pills, beyond caring about an overdose and figuring more was better.
80% improvement overnight. No lie. It was more than a miracle.
It took another two years to recover the remaining 20%--something I attribute to still not fully understanding how nutritionally deficient the prednisone had left me. (And also the incredible lack of awareness within the medical community about how prednisone and Exogenous Cushings could affect someone even after the adrenal glands started working again.) So between the first episode of Cushings and the second, Cushings consumed my life from the age of 22 through 30.
What were you doing in your 20s? Probably off having a lot of fun that was not even an option for me. I hate that about my 20s. Then in my 30s, I got hit with PCOS and infertility. I feel gypped.
Anyway, not once had a doctor thought to check my B levels or assess me for any other nutritional deficiencies. Oh, they checked me for diabetes. They checked my adrenals again, but they missed the obvious. Again.
(Doctors don't seem to know much about nutrition and it is hurting patients like me. A book I highly recommend, that I've even seen in some physician offices is Prescription for Nutritional Healing.)
This was also the turning point that marked my enduring interest in nutritional/alternative therapies. I have had really good experiences with vitamins. Now, I don't know if that's because I was chronically deficient from the prednisone or what, but they work for me. I am more likely to try a vitamin, natural remedy or supplement than a prescription drug, often with great results.
In fact, right now, I'm eating celery every day for my blood pressure (which remains low with the occasional higher reading, but I'm still on prednisone too). I read about its impact on blood pressure and, since I currently eat a lot of celery due to prednisone munchies anyway, I thought, why not see what happens?
What the hell? It can't hurt me any more than a doctor would.
Note: I've recently learned about steroid withdrawal which sheds new light on this story.
Sunday, April 18, 2010
I am concerned that there are multiple hormonal things going on and important details are getting missed. My goal is coordinated care where someone is pulling all the disparate threads together.
Right now there are multiple doctors doing different things and nothing is coordinated. Everyone is dealing with the parts and not the sum.
I would like some help in figuring out the right treatment regimen for me. I want to be sure we're not missing something important.
1. 1988-1999 Asthma diagnosed at 15. On prednisone more than off along with multiple ER visits until the late 90s when modern asthma meds finally gave me some control.
2.Regular menstrual cycles and normal weight loss with low fat, low calorie, high carb, high exercise regimen in late teens/early 20s. Maintained for 5 years until...
3. 1991-2000 Asthma and Cushings related to prednisone use in the 90s (in my 20s). Had Cushings twice within this time period. (Copy of lab work to be provided.)
4.Inability to lose weight doing what I had done before, which was treated medically with 'Go to Overeaters Anonymous' when that was not my problem. Always on a diet, always exercising, never losing weight but I was a very fit fat chick. I even taught aerobics.
5.2002, tried to conceive and found out I had PCOS and a luteal phase defect. No family history of Diabetes or PCOS.
6.2002 Given Metformin and Fortamet for the PCOS on 3 separate occasions, discontinued each time due to muscle pain and cramps. No GI upset, just muscle pain and cramps.
7.2006 Worked with an endocrinologist on a PSMF and lost 60lbs. Unfortunately, I still didn't ovulate, I still had dyslipidemia. All the same health problems, just prettier packaging.
8.Jan 2007 Got pregnant via IVF. Never responded to injectible cycles, but did have OHSS with IVF--twice.
9.Had an uncomplicated pregnancy but was on prednisone in 2nd trimester for asthma flare and was told not to low carb because it wasn't 'safe.' So I didn't and gained about 35 lbs.
10.Gained even more weight with the 1.5+ year of severe sleep deprivation as a new parent.
11.2008 Developed a (determined to be benign) sinus heart arrhythmia and racing heart. This improved somewhat in 2010 when Advair was replaced with Symbicort, but I do still experience an oddly (to me) racing heart beat.
12.2009 Hypertension diagnosis but no meds until 2010—Pending question of hormonal influence. 2010 Low-dose dexamethasone suppression test ordered, but due to an asthma exacerbation in March, could not complete because of prednisone. My BP dropped on the prednisone. I had to discontinue all BP meds. Weight loss of 25 lbs did not effect BP. Actually gained 8lbs of fluid with prednisone and had low BP.
BP required 2 meds and control still was not achieved; we were waiting and seeing if additional weight loss would help or not, but then I got sick.
13. 2010 Enlarged thyroid with nodules too small to biopsy and thryoid levels are normal. (Copy of lab work to be provided.) Advised it was Hashimotos but no antibodies test was done. My maternal aunt has Hashimotos. My maternal grandmother had hypothyroidism.
14.Currently on an alternate day taper of prednisone 10mg every other day. Should finish this week. Concerned about Cushings developing again.
15. 2010 a CT scan found a small lung nodule in right lower lobe. Due for second CT scan in December.
16.Found a lump that may need to be assessed further.
1.Is it possible to test for the antibodies to find out if I am developing Hashimotos' or not?
2.Should I supplement with iodine? I realized that I don't actually get much in my diet. How much should I supplement?
3.Is it possible that the thyroid is enlarged due to low carb eating? I have read that long term low carb can affect the thyroid.
4.What about prednisone = normal blood pressure and discontinuing BP meds?
5.Should we test my adrenals to be sure they are coming back online after this latest round? I'm concerned about Cushings again.
6.Should we try Metformin again? But how do we ensure it's safe? Is there a way to test and find out if the muscle pain is a serious side effect or not?
The pain is significant enough I don’t know if I could handle it even if the muscle side effects aren’t dangerous. So perhaps it's moot.
7.What can be done to address the insulin resistance? The supplements I use have been studied and shown to help, but I have no idea if they are helping me or to what degree. I am kind of making things up on my own and shooting in the dark, which is not ideal.
8. I think it might be a good idea to do a glucose challenge--I've had some wonky hypo like episodes that have me concerned. My insulin is high and I've recently been made aware that anyone with a fasting blood sugar over 90 tends to develop Type II within 5 years (or was it 10??) and I'm a candidate for that. My fasting blood sugars have been over 90 since 2002.
9.Switch weight management clinic to your system?
10.What do you think the next step should be?