Sick Momma

Check out Patients For a Moment

2009-07-01T15:41:00.000-07:00

I'm delighted to say that my post What's In A Name? was included in second round of the new blog carnival for, by & about patients, Patients For a Moment, started by Duncan Cross.

For those who aren't familiar with blog carnivals, they are (usually weekly) collections of posts by various bloggers on a specific topic. There's a number of medical blog carnivals out there (my favorite is Grand Rounds). You submit yourself and the host of that carnival decides whether to include you. Some hosts include all submissions, others sometimes pick and choose what they consider are the best ones for their theme or topic.

I've been a little shy about submitting my posts to carnivals in the past, partly because my blogging is usually more about what's going on in my life than taking more of a step back to look at issues.

Anyway, there's lots of great reading in this blog carnival, so if you haven't already seen it, please take a look!

Yet Another Weird One ...

2009-06-30T19:23:00.000-07:00

What is it with me and weird blood test results that don't seem to have much signifiance?

The jury's still out on this one, so we'll see what my rheumatologist does with it.

But the hematologist called me this evening with the good news that I'm not going to bleed to death. (I kind of knew that already.)

I am among 1 to 3 percent of the population that has a weird antibody that causes an abnormal test result on the typical test used to check clotting.

Dr. D called it a "lupus inhibitor," which is a bit of a misnomer because apparently "lots" of people without lupus have it. (Lots, of course, being fewer than 3 percent of the population. The Lupus Foundation says about half the people with it do not have lupus.)

Ironically, people with this antibody that makes it look like they don't clot properly are more at risk of thrombosis (blood clots that can lead to a stroke or embolism, etc.).

Turns out this might also explain my miscarriages a few years ago, if the heart-shaped uterus wasn't enough to cause them.

Anyway, you can read more about this at Wikipedia here or at the Lupus Foundation page here.

So I don't think that this will help my rheumatologist assign me a lupus diagnosis. I don't know if I want one ...

But I'll be calling his office tomorrow to alert him to this latest development. I'm also hoping to get copies from the hematologist's office of all the lab results of the tests he ran, which I'll post here to share.

Medical Update

2009-06-27T10:43:00.000-07:00

Seems like I've seen a ton of doctors lately, and I don't think I've updated on all of them. So here's a little roundup of what my most recent medical stuff has been:

Dermatologist: Biopsy of weird white bumps on knee scar came back as secondary milia, pretty much the best possible result.
Cardiologist: Follow-up visit on 6/22 was pretty normal. Residents apparently persuaded cardiologist to recommend a heart monitor that I will wear for a week to see what (if anything) is happening heart-wise when I faint and/or feel close to fainting. (I have far more close calls than actual loss of consciousness.)
Hematologist: Blood drawn June 19. Called to check on results June 24. Nurse said doctor had to sign off on results but "they confirm your blood is thin." The remainder of the tests he ordered were various autoimmune coagulation tests, which she described as "pretty esoteric" and said she couldn't interpret them. Had hoped to get call from doc yesterday, but no such luck. Hopefully next week.
Internist: Visited 6/23 with long list of things to discuss, including increased joint pain, fatigue and return of hair loss. She ordered more blood work, including cortisol test, thyroid, and iron levels.
Neurologist: Playing phone tag but she left voice mail that EEG was normal and lumbar puncture did not show O-bands, which would have been a sign of multiple sclerosis. Only 50 percent of MS patients have O-bands in their spinal fluid, so it doesn't entirely rule out MS, but she's not leaning towards thinking that's my mystery illness. I'm scheduled to see her again at the end of July.

Phew. That's a lot of stuff!

I got distracted and failed to call the hospital to set up an appointment to get the heart monitor. I'll have to call on Monday and see when they want to do that.

What's In A Name?

2009-06-26T11:31:00.000-07:00

Which is worse: Having an invisible chronic illness that takes months or years to diagnose or having one with a diagnosis that isn't taken seriously by either medical professionals or family, friends and/or co-workers?

Rosalind Joffe, author of Women, Work and Autoimmune Disease: Keep Working, Girlfriend!, blogged this week about being glad she has a disease people actually believe exists.

What is it with the lack of respect for illnesses like fibromyalgia and chronic fatigue syndrome?

Since I came down with my mystery illness, I've started reading a fair number of medical blogs, both by patients and by medical professionals, many not even remotely related to my experiences.

For some reason, I've been especially drawn to blogs by people who work in emergency rooms. I suspect it's the dark humor, something I've missed since leaving the newsroom.

But I'm offended when I read references to patients who came into an ER as having a "made-up disease" or being a drug seeker. To those folks, unless there's something that shows up on an X-ray or MRI, it can't be real. Migraines, back pain, fibromyalgia -- none of those things exist to some of these docs and nurses, and even if you go to the ER for something else, they would look at you with suspicion if you had a history of those problems until and unless they found clear-cut evidence of a problem (preferably trauma) they considered worthy of their time.

Here's my deep, dark confession: I was relieved last time I saw my rheumatologist and he told his resident that he had crossed fibromyalgia off his list of possible diagnoses for me because of the collection of abnormal blood tests results I'd had.

Don't get me wrong, I respect fibromyalgia as a legitimate illness that causes much pain and suffering, sometimes to the point of total disability. I do not consider it a made-up disease.

But there are so many doctors out there who either don't believe fibromyalgia exists, or who think it's a psychological disorder. And even more laymen who think it's a bogus diagnosis.

Even (especially?) the media has little to no respect for fibromyalgia. Earlier this year, the New York Times (not my favorite newspaper) inflamed the fibromyalgia community with an article about the approval of the drug Lyrica to treat fibromyalgia. The article was insulting to people who suffer with fibromyalgia from its start: "Fibromyalgia is a real disease. Or so says Pfizer ..."

It's bad enough to have an invisible chronic illness and constantly have people saying (or thinking), "But you don't look sick ..." without also having them roll their eyes because they think you're either faking or that it's all in your head.

What does it take to get some respect for the fibromyalgia community? And the rest of the invisible chronic illnesses?

The Longest Day

2009-06-24T10:26:00.000-07:00

Tuesday was two days after the summer solstice, but it was certainly the longest day I've had in a long time.

My husband, Scott, had one of his rare business trips, with his flight leaving at 6:15 a.m. Tuesday and, thankfully, returning home that night.

His early departure meant that when Ellie woke up at 2 a.m. and called for him, I needed to respond to her instead. We'd discussed his trip with her, but in the middle of the night, she apparently forgot about it and was beyond disappointed to get me instead of him.

"Iiiiiiiiii waaaaaaaaaant Scooooooooooott," she sobbed for just over an hour. (Yes, she tends to call us by our first names, and we're mostly OK with that. Mostly.)

The poor kid eventually cried herself to sleep.

Then it was, I think, the first time I had to get her ready for school/camp/daycare on my own. Since I didn't have a job I needed to get to, we didn't set an alarm and she woke up on her own about 6:30 a.m., 30 minutes later than normal. (And I was grateful for that, and that it wasn't one of her days when she woke up 45 minutes earlier than usual.)

The morning routine went fine -- she was delighted when I let her choose what clothes I would wear for the day -- and I dropped her off at preschool at 7:30 a.m.

I came home and immediately crawled back into bed for a couple hours more sleep, although I would have been happier with five or six more hours sleep. But I had a noon appointment with my internist (who, btw, had not heard of the NIH's Undiagnosed Diseases Program and was excited to hear about it), followed by a meeting with my lawyer to discuss next week's deposition on my 2006 car accident that left me with ongoing back and neck pain.

Back-to-back appointments on any day would have been Too Much for me, particularly such lengthy appointments (almost an hour with the internist, 90 minutes with the lawyer). But this day? I was crazy to even try.

After the lawyer, I went home for a little downtime before picking up Ellie. I had promised her a trip to McDonald's Playland after school, but I knew I just wasn't up to it so I bribed her with a "movie night" instead. She was delighted, since she rarely (if ever -- I can't think of another time) gets to watch DVDs on a week night.

We both enjoyed Enchanted, a movie we've watched several times before. Ellie was great about cooperating with getting ready for bed, but then came the hard part -- going to sleep without Daddy. I had this silly idea that if I let her stay up a bit later than usual, she would be tired and fall asleep faster. Nope!

We hit her bedroom for lights out about 8:30 or 8:45 p.m. I was beyond exhausted at that point, to the point that I was literally shaking/trembling. Ellie was a chatterbox (she gets that from her mom, who was notorious with college roommates for getting chatty as soon as the lights went out), and just didn't settle down the way I hoped she would. She talked, and sang, and fidgeted until finally, around 10 p.m., she finally gave up and fell asleep holding both my hands.

That last part was trickier than it sounds because it hurt even though she wasn't squeezing my hands particularly hard. But it was worth it, since it got her to sleep finally.

I was creeping out of her room about 10:20 p.m., just as I heard Scott coming into the house, a long, long day for both of us.

Today, I'm really paying the piper for putting in a "normal" day yesterday. I find it amazing that when I overdo things, not only do my mystery illness symptoms flare, but so do other ones. I started getting a killer sore throat during Ellie's staying-awake marathon, and by the time I got to sleep myself, I had major congestion and sinus pain.

My lawyer asked yesterday afternoon how I was feeling, and I replied, "Cruddy." Today, I'm wishing to go back to cruddy, which would be a major improvement. :-(

******

Apologies to those who have left comments lately or sent email, both of which I'm horribly behind on. I will catch up, but it's not looking likely for today.

Another Blood Draw, Another Bruise

2009-06-19T15:16:00.001-07:00

You know it's a bad sign when the lab technician says, "Jeez, you just don't want to clot, do you?!" as she raises your arm in the air and presses with gauze on the site of the blood draw.

My hematologist read his email while on vacation, and I got the call this morning that he'd like to repeat the platelet function test to make sure it wasn't a fluke or a lab error (although with the elevated result from November 2007, it seems unlikely that it was a fluke) as well as to run some autoimmune coagulation tests. Unfortunately, I didn't get the names of those tests today, so I'll have to wait until I get the results to find out exactly what he was looking for.

My hematologist teaches and treats patients at OHSU, Oregon's medical school, so you deal with a lot of students there. A phlebotomy student who finished her coursework and is doing her internship asked if it was all right for her to draw my blood.

I told her no problem, but also alerted her that my veins can be challenging to get a needle into. Then she looked at both my arms, with 4-inch-long, 2-inch-wide bruises at both wrists and a large bruise in my right elbow, and bit her lip.

She felt around tentatively for a vein that wasn't in the center of one of the bruises, before she asked the other tech to trade patients with her. Poor kid. I was fine with letting her try a poke or two on me since I figure students need practice on the people with tricky veins as well as the ones with easy veins. But she didn't want to hurt me by poking me in one of the bruises, and those were the only veins she felt semi-confident of being able to tap.

Her more experienced colleague got lucky on the first poke, and then was determined that she wouldn't add a new bruise, hence the holding my arm up when I didn't clot with normal pressure.

I got only a little bruise where the needle poked me, but I got a series of bruises higher on my arm where she tied the tourniquet.

But what are you going to do when you bruise easily and have for your entire life?

Post-Op Visit: Good; Clotting Ability: Poor

2009-06-18T13:21:00.000-07:00

Today was my two-week post-op checkup with my OB who did my D&C and endometrial ablation on June 4.

She said she was pleased with how the procedure went and gave me some photos of the inside of my uterus. The only thing that was at all unusual is apparently the inside of my uterus is heart-shaped. That sounds sweet, but it may have been a contributing factor to my miscarriages. (It's moot now since we no longer plan to expand our family.)

But the abnormal platelet function test that her nurse called me about just a couple days after the procedure is apparently more serious than I realized. The OB was pleased to hear I already have a hematologist, and told me to call him today.

I left a message for his assistant, and got a quick call back. "Your PT is 70?!" she asked. "Do you have it in front of you? Can you fax it to me?" Meanwhile, she was looking at my file on her computer. "It looks like Dr. D was treating you just for anemia. We didn't know you had a bleeding disorder!"

"Well," I replied, "I didn't know that either. And I don't know that I do."

Like my neurologist, Dr. D is out of town on vacation, but he's responding to email sporadically so she expects to have a plan for me tomorrow.

Hm. I guess if I'm not clotting properly -- I'm taking twice as long to clot as it should -- that explains the horrendous bruises I have from my blood patch experience ...

Stay tuned. I'll let y'all know what's up when I hear something.

(FWIW, the OB said that perhaps my difficulty clotting was related to my overall health issues. She says it sometimes becomes an issue for people with lupus and other autoimmune diseases. We'll see. I suspect this is just another in a long line of weird test results that don't lead to a clear diagnosis.)

Edited to Add: I vaguely remembered there being some tests run earlier in my illness because I was freaking out about my bruises. I dug through my very thick file of lab test results and discovered that platelet function tests had been run back in November 2007. At that time, the APTT that's causing concern now was 53.6. I don't know why that didn't get followed up on back then. I faxed over those results to the hematologist as well, so he'll have that much more to contemplate. I'm guessing that I won't be waiting until I'm due for an annual checkup on my MGUS before I see him again ...

More About Undiagnosed Diseases Program

2009-06-17T16:57:00.001-07:00

I'm not sure why I'm getting all excited about this since I've got to clear a huge hurdle to get chosen for the program. And there's no guarantee even if I get accepted that they will be able to diagnose me.

But I just think it's so cool that there's a program like this for all the medical mysteries out there. (And please, President Obama & Congress, don't cut its funding!)

Anyway, I wanted to share a link to a New York Times Magazine article about the program (featuring an Oregonian no less!) that was published back in February. I'm shocked none of my relatives or friends saw it and pointed it out to me back then, but thanks to Shiri for telling me about it in the comments of my last post! (Note, you may need to register with the NYT to view the article on the website, but it's free.)

OTOH, after reading the article, I suspect I'm not nearly sick enough to qualify for the program. But that's OK. I like knowing it's out there, and I'll bring the information about it to my internist next week and see if she thinks I'm worth offering as a candidate to the NIH. (I wonder if my rheumatologist would go on the record as saying that perhaps I've got a previously unknown/undiagnosed disease and that's why they're having trouble figuring out what's wrong with me and how to treat it.)

Relief!

2009-06-17T12:53:00.000-07:00

Just wanted to update that yesterday's blood patch was worth getting up at dawn for -- the head and neck pain disappeared by the time I woke up from the light sedation the doc administered.

The only odd part is apparently they had a lot of trouble getting blood out of me for the patch. I was lying on my stomach, face down like on a massage table, and my arms dangling off the sides of the table. My last memory is of one of the nurses tying my arm to aid in getting a blood sample, and the anesthesiologist saying the vein in the center of my right elbow looked like a likely candidate.

I'm always a little challenging to get blood from, but there are four needle marks in bend of my right elbow, two on my right wrist and two to three on my left wrist. I've got huge, horrible bruises on both wrists, which are a little sore and I've been icing.

Meanwhile, I'm learning yet again the benefits of social media. I'm on Facebook and Twitter, like the rest of the world. (I'm very dull on Twitter and don't use it extensively.)

But yesterday, someone I didn't know sent me a tweet asking if I was familiar with the National Institute of Health's Undiagnosed Diseases Program. I'd never heard of it, but luckily the guy gave me a link and wow! I've already printed out the letter to physicians so I can take it with me when I see my internist next week. It's a lot of work for her, but I'm hopeful she'll agree to do the referral I need.

If I'm accepted into the program, the costs of meeting with lots of top doctors and doing whatever tests they want to run is free to me, and the program might even pick up my travel costs. And while they make it clear that they cannot guarantee a diagnosis for every patient in the program, it seems like if I'm seeing doctors who specialize in rare and/or difficult to diagnose diseases, I stand a better chance of getting a diagnosis.

Cross your fingers for me, everyone! And if, like me, you've got a mystery illness, follow the link for the program and consider asking your doctor for a referral for it too!

Blood Patch, Here I Come!

2009-06-15T21:09:00.000-07:00

So after repeated phone calls today, the consensus among the medical professionals was that yes, I have a spinal headache, and yes, I need a so-called blood patch.

My neurologist is on vacation (of course!), so one of her partners talked to me about what was going on. I had hoped that maybe since I'd held out for five days that it meant it would go away by itself very soon. Instead, she told me that the fact that it hadn't gone away yet nor lessened meant that it was highly unlikely to go away on its own.

Live and learn, I guess. I wonder if I could get into med school based at least partly on all I've learned during the two years I've been chronically ill ...

So, now I have to get myself to NE Portland (I live in SW) by 6:45 a.m. tomorrow. Sigh. And I'm supposed to have a driver, which means I'm messing up Scott's morning in a big way with very little notice. :-(

I am grateful that they got me in so quickly. The reason for the ungodly early hour for the procedure is the anesthesiologist is squeezing me in before the start of his day.

Spinal Headache?

2009-06-14T21:09:00.000-07:00

I had my lumbar puncture/spinal tap on Wednesday, and it wasn't as bad an experience as I'd feared it might be.

Of course, getting the darn thing was practically a comedy of errors.

I was surprised that the hospital hadn't called me to pre-register since it was going to be done in their short-stay surgical unit. (Yes, many doctors do these in their offices. However, when a doc has her office in a hospital's medical building, chances are all her procedures will be done at the hospital.)

My parents are visiting from Chicago so my father went along to be my designated driver afterwards, which was great since it meant Scott didn't have to miss work.

We were running a little late (my fault), so I was feeling extra anxious when we arrived and it turned out that the check-in people didn't have me on their list as scheduled. Luckily, I brought along my letter from my doctor's office telling me when I was scheduled and what to expect.

So they figured out who I was and got my paperwork ready. It wasn't long before my name was called and I was led back to a room and told to disrobe and put on a gown. The nurse came in, took my vitals, and told me she would call my neurologist to let her know I was there.

Somehow, I hadn't brought a book along. How the heck did that happen? So I watched old TV while I waited. And waited. And waited.

I was told to check in at 1:45 p.m., 45 minutes before the procedure was supposed to occur. At 4 p.m., the nurse poked her head in and asked if the doctor had been by. She hadn't, so the nurse called her office again. Turns out, the neurologist had already left for her son's graduation. (High school, I think.)

So she asked me if I wanted to re-schedule or to have an anesthesiologist I'd never met do the procedure instead. I opted for the doctor I'd never met, figuring it was more convenient to have it done while I was already there. When I made that choice, I assumed he was in the hospital.

But no. He needed to come from his office. So I waited some more and watched more bad TV.

The procedure was not exactly pain-free, but it wasn't as bad as I feared based on my experience with an epidural during my labor with Ellie back in 2004. The doctor very helpfully cooperated with my attempts to distract myself by telling me all about why he chose his specialty. (He started his residency in general surgery but new residents didn't get to do anything and the surgeons were nasty but a really nice anesthesiologist chatted to him during a surgery and invited him to do whatever it is the anesthesiologist was doing, and that was that. He switched his focus. Plus, he says, surgeons have to stand for up to 12 hours during surgeries and he didn't like being on his feet that long. :-)

What surprised me, I guess, was that unlike when blood is drawn and it's a quick process, it took about 20 minutes for the spinal fluid to drip out the tube in my back and fill up four test-tubes.

Apparently about 30 percent of people who have LPs get what's called a spinal headache, which eases or goes away entirely when the person lies down. The nurse told me there'd be no question if I had a spinal headache because it would be the Worst Headache Ever.

So I think I was in denial about whether or not that's what was happening to me, but now I'm pretty sure that's what I've got, if only because lying flat makes the headache and dizziness fade to background discomfort.

The cure is what's called a "blood patch," where the doctor takes some of my blood and puts it into the same place he put the needle for the spinal tap. Although I'm hoping that since I've been putting up with it for so long that when I call tomorrow, he'll tell me that it's almost over anyway ...

I'm not particularly eager to have another needle put in my back!

Biopsies Normal

2009-06-08T15:59:00.000-07:00

Got the call this morning from my OB's nurse to let me know that just about everything looked fine from the tests they ran.

The polyps they biopsied were normal, as were most of my lab tests. The only question was about my platelet function test, which was abnormal. Normal is 22-35, and mine was 70.

So they want me to retake the test in two weeks, when it will hopefully be normal.

If not, I'm guessing I'll be going back to see my hematologist. Good thing I have one that I like. :-)

Meanwhile, I have my post-op appointment June 18, but everything is going fine so that will just be a formality.

Good Surgery

2009-06-05T15:42:00.000-07:00

Just an update to let everyone know that my surgery yesterday went fine with no complications of any kind.

I got some pain meds at the hospital in my IV right after I woke up, and one 5 mg oxycodone at that time, but I haven't taken anything else other than ibuprofin (shhh! don't tell my gastroenterologist about that!). And today, the only new pain I have is a very sore throat from the breathing tube the anesthesiologist put in.

No cramps, no bleeding, nada.

My legs are still a little wobbly from the anesthesia, which always seems to linger for me, and I'm even more tired than normal, but I have to say that it's a better day-after-surgery than I've ever had before!! Oh, and this is the first of my seven surgeries that I didn't wake up from the anesthesia in a major asthma attack. Woohoo!! :-)

I hope to get the biopsy results when I see my OB for my June 18 post-surgical check up, but it's unlikely the polyps were anything but benign.

And hopefully this will put an end to my trouble keeping my iron levels up!!

Not-So-Happy Anniversary to Me

2009-06-05T15:27:00.000-07:00

Two years ago today, I woke up in the wee hours feeling feverish. First I had the shivers, then the sweats lasted for hours. It was great timing because we were scheduled to fly that afternoon to Chicago for my niece Becca's high school graduation.

When it was time to get up and start getting ready, I literally couldn't lift my head out of bed much less get up. My husband, who wasn't fully healthy either, got to take care of my 2.5-year-old while also canceling our flights, hotels and rental car and notifying my family what happened.

It was three days later when I finally felt well enough to drag myself to the doctor to find out what the heck had knocked me on my butt. She diagnosed double pneumonia, put me on antibiotics and sent me home, where, essentially, I just never got better.

A month later, I was hospitalized after showing up in the ER with what I feared was a heart attack but wasn't. They admitted me because my heart rate was through the roof and my oxygen saturation plummeted whenever I was mobile. I stayed in the hospital for eight days while they ran test after test that ruled out most likely causes to kill me, and then sent me home with no answers, feeling worse than when I arrived.

A week or so later, we enrolled Ellie in full-time daycare because it was apparent I wasn't going to be able to take care of her on my own anytime soon. We assumed it was a temporary measure and planned to take her out before a trip to Chicago on Labor Day weekend to give my niece the beautiful butterfly quilt I had made for her graduation gift.

Of course, that trip got canceled too (albeit not at the last minute), and the quilt was shipped to Becca instead.

And here we are, two years later, and I'm still sick and Ellie is still in full-time daycare and we still don't have a diagnosis or treatment plan.

Happy anniversary?

I don't think so. I look forward to celebrating the anniversary of when we figure out what the heck is wrong with me and, ideally, curing it. Or at least finding a way to treat it that give me back the ability to fully participate in my daughter's life.

Biopsy Taken

2009-06-03T15:38:00.000-07:00

I saw the dermatologist today -- another likeable, good doc my internist found for me -- and she leaned toward thinking the weird white bumps on my right knee are either secondary milia or caused by foreign objects that didn't get cleaned up properly when I injured it.

To be sure, she went ahead and took a small biopsy of one of the bumps.

She initially was going to just take a shaving to look at it under a microscope to see if it was normal milia or not. But when I mentioned my mystery illness and that my rheumatologist was fascinated by the rash, she decided to take a larger biopsy that went deeper than a shaving would so it could be tested for autoimmune diseases. It would not be the first time someone got diagnosed with one of the autoimmune disease thanks to a dermatologist doing a seemingly unrelated biopsy.

The only annoying part is she put in a single stitch on the biopsy site because of the depth of it, so I have to go back for a 5-minute appointment to get the stitch out. The really annoying part is we're going to be at her office on June 12 for an appointment for my daughter, and I asked if I could have the stitch out at the same time, but it's two days too soon. Sigh. (I plan to have them look at it and hopefully for once in my life I'll heal quickly so they'll decide they can go ahead and take it out for me while I'm there and save me a trip!

Anyway, the dermatologist said that because of my mystery illness, she was going to send my biopsy to the best guy in town to figure out if there's anything else going on in it. It was nice to have her take it all quite seriously.

Other than that, we discussed the return of my childhood eczema, and she prescribed some ointment for me for that. She did the whole-body scan and commented on my lack of moles. :-) I've got a lot of freckles, but no real moles, which I guess is unusual in someone as fair-skinned as I am and who has been sunburnt as badly (and frequently) as I was in my youth. (I don't tan. And I've finally learned not to even try, but I think I was in my late 20s before it really sunk in.)

Yesterday's dental appointment was fine -- no new cavities, thankfully! But the dentist doesn't like the look of some of my older amalgam fillings. He recommended I replace one of them with a crown before it ends up breaking on me at some point. So it's going on my to-do list for when I have time, energy and money to deal with non-urgent health matters, like the sinus surgery I keep getting told I need.

Look At All The Pretty Colors

2009-06-01T21:55:00.000-07:00

I had my EEG today, and hope to hear from the neurologist by the end of the week.

It was kind of a wild experience in some ways.

They had a recliner for me to sit in. There were 26 sensors attached to my face and head after the technician spent what felt like a long time measuring my head and marking with a red grease pencil in various places (including the bridge of my nose!).

Then I settled back in the recliner and answered a few questions: "What's your full name?" "Where are you right now?" "Count backwards from 10."

Then she settled a rectangular light just a few inches from my face and told me to close my eyes for the rest of the test. The strobe light went off for brief periods with different speed levels.

The rest, of course, was just sitting still and trying to relax with my eyes closed, which was harder than I expected. I kept listening for the tech's typing, which would come at what seemed like random periods. She also had water running in the room from a sink faucet, which just drove me nuts. :-)

Afterward, I asked her how many bulbs were in the lamp. She told me there was just one, a white light. But I saw color changes through my eyelids. It started out (through closed eyes) as a vivid red, then changed to blue and then green. And wow -- the patterns it made were fascinating. My favorite was a pattern of dotted curved lines, almost like flower petals, that moved, radiating from the center outwards. It was almost hypnotizing.

The Weird Rash Thing

2009-05-31T21:06:00.000-07:00

So, you might remember that I took a tumble on Thanksgiving Day and messed up my right knee pretty badly in a superficial way. I had a nasty wound that went deeper than I realized at first. It took ages to heal but finally did, leaving a red scar.

Then I noticed a funny white bump: something hard underneath the skin on the edge of the scar. I assumed it was a clogged pore and would eventually clear itself. Instead, I got more of them.

They cluster in weird ways. The group at the top of the photo (which is the bottom of my knee) has at least 10 of the little white bumps. The other ones you can see in the photo are groups of at least two or three.

So far, all the doctors I've shown it to are fascinated and looking forward to finding out exactly what it is. I see the dermatologist on Wednesday and assume she will biopsy it, and we'll some answers about that, at least.

An Addendum or Clarification

2009-05-29T21:39:00.001-07:00

After reading yesterday's blog post, Scott reminded me today that when my odd little episode happened, it was actually somewhat bilateral at first. Initially, I could move my left leg semi-normally, but both arms were almost impossible to lift. I think my right arm could get just a couple inches at first, but my left could reach a bit farther initially and full motion came back much faster on the left than the right.

He said that if he had understood how asymmetric my symptoms were as they settled in, he would have ignored my telling him not to call 9-1-1.

****

I have a crazy medical appointment week ahead next week.

Monday: EEG at neurologist's office
Tuesday: Semi-annual dental checkup (Here's hoping for no cavities!)
Wednesday: Dermatologist appointment (I keep meaning to try to take a photo of my knee so y'all can see the weird mini cysts I have on the scar from my Thanksgiving Day fall.)
Thursday: My minor surgical procedure (D&C and endometrial ablation)
Friday: Recovery from Thursday

Yes, I am single-handedly supporting the Portland, Ore., medical community. And I'm not even dealing with the things that seem less important, like my sinuses that the ENT insists need surgery and the allergy testing my immunologist has been asking to do.

(The immunologist wants confirmation that I have serious allergies because then he won't feel concerned about my high eosinophil levels. I keep telling him to just take my word for it that I have serious, year-round, major allergies. I don't need testing to confirm that, although it might be interesting to see if I've picked up any new ones in the past decade or so since the last time I got tested.)

****

A Funny Thing Happened ...

2009-05-28T20:55:00.000-07:00

A weird thing happened on Monday, and I have struggled to describe it to two doctors so far. I'm not sure I'll do better here. It's all kind of foggy.

I was having bad vertigo, which happened a few months ago when a sinus infection settled in my inner ears so I wasn't thinking too much of it other than to complain to Scott that I felt drunk without the fun part. Room spins and such.

Scott was starting to chop veggies for a stir fry for dinner, Ellie was watching something on Noggin, and I got out of my recliner to refill my water bottle with Crystal Light. It's 8-10 steps from my recliner to the refrigerator and when I got there, the dizziness hit me so hard that I grabbed the counter with both hands and tried to hold on without fainting. I didn't faint. But I did collapse after a moment or two that seemed to last forever. Scott went to get me a cool washcloth without saying anything, and that felt good. I asked him to give me my water bottle, and he held it out to me and I realized that I couldn't seem to lift my arm more than an inch or two. He took my pulse, which was 130ish, but my "normal" these days is 100-110 at rest and I was definitely freaking out so that's not as big a rise as it could be.

I couldn't get up off the floor, my right leg wasn't really working either. I lay on the kitchen floor for awhile and eventually regained the ability to move. (I also decided that if I'm going to collapse and not be able to get up, I need to lose enough weight that Scott can lift me off the floor when I'm dead weight!) We talked about calling 9-1-1, but I was mortified at the idea of being carried out of the house on a back board to an ambulance. Yeah, I know that's silly. But I clearly wasn't dying and ...

Even after motion came back, I still didn't feel "normal" on my right side. Tinglier, heavier. I was shaking/trembling. Another weird thing was that the right side of my mouth was shaking too. So weird. By bedtime, I could walk, but couldn't lift my right leg high enough for the stairs.

By the next day, everything worked pretty much as normal if a little shaky and feeling like it took extra effort.

Tuesday, I called my internist, who verbally rolled her eyes at my not calling 9-1-1 and told me in certain terms that if it ever happened again, I was to get to an ER either by ambulance or my own steam, immediately. I told Scott she said to ignore me if I told him not to call 9-1-1 again.

Today I saw my neurologist for an appointment that was already set up. She says that next time I need to call her asap (and she agreed with my internist that it was ridiculous that I hadn't called 9-1-1).

I think the scariest part was that she was talking about the need to notify the DMV if she thought it was likely that I could have another episode like that and lose control. I rarely drive other than to doctor appointments and occasionally to the pharmacy, but boy I'd hate to lose my license.

She says there's way too many possibilities for what it could have been to know. I'm scheduled for an EEG on Monday to see if it looks abnormal. And I'm scheduled for a lumbar puncture (spinal tap) on June 10, which may or may not help with my diagnosis and/or ruling out multiple sclerosis and several other autoimmune diseases.

Here We Go Again!

2009-05-22T11:19:00.000-07:00

Funny how quickly we forget.

I remember now why it was a bad idea to take Prednisone in the evening. My internist wanted me to start on it in an effort to kill the sinus infection I've had for weeks now. It hadn't ever gone away after the cold/flu bug I started in late April, but it flared up with a fever and worsening symptoms this week so I decided it was definitely time to do something about it.

So I'm back on my favorite antibiotic -- Avelox -- and 40 mg per day of Prednisone on a decreasing dose.

I have the shakes back and the jitteriness that Prednisone always gives me. And oh, did it make sleeping last night challenging. I know I was dozing at periods because sometimes the time went faster than it seemed like it had, but I swear I was awake last night more than I was asleep.

But I think the steroids might be helping my joint pain. I'm afraid to jinx it by writing or talking about it, and really, it might just be that my brain is so focused on my sinus infection that it's not processing the joint pain, which will come back in force once I shake the infection. But maybe not. Maybe I'm finally responding to corticosteroids the way I'm supposed to. Wouldn't that be nice? :)

This afternoon I have to go to the hospital's pre-admission clinic to fill out paperwork and get some labs done for my June 4 procedure. Then I go see my OB for my pre-op appointment.

I hope y'all have a lovely long weekend!

Good News, To A Point ...

2009-05-19T10:27:00.000-07:00

I saw my delight of a hematologist yesterday. (He's pretty awesome -- if you're local to Portland and need a hemonc, go see Dr. Thomas DeLoughery at OHSU.)

The good news is my ferritin levels responded exceedingly well. They bounced up from 26 to 214. The hematologist says that level of response makes it unlikely that I'll need to repeat the infusions, but I'll need to get my levels tested in three to six months and then annually from now on.

The downside? If iron deficiency was causing my fatigue, I should be feeling more energetic by now. And I'm not.

Sigh.

Of course, that might just be because I'm not completely over the flu bug I caught a few weeks ago, and I'm still run down from that.

All I know is I don't feel any better.

Meanwhile, about those weird ganglioside antibodies I tested positive for? The ones none of my other doctors were willing to venture a guess as to their significance? He's referring me to my neurologist for more testing and leaving me in her hands.

I'm feeling fairly frustrated at this point regarding my mystery illness. Yeah, that's an understatement. :)

Looking ahead, I see my internist on Thursday and am considering requesting antibiotics for my sinus infection. (My eosinophil level on my May 11 tests was 10 percent, and I'm guessing that was due to my ongoing infection.) I do my pre-op appointment with my OB on Friday. And I see the neurologist on May 28, who I hope will go ahead and order the tests we discussed last time I saw her.

And that's all the news from here.

Brandt Disease

2009-05-14T14:47:00.000-07:00

"I know we joked about it before, but I'm afraid it might just be true that you have Brandt Disease," my rheumatologist said while examining the weird rash-type thing on my knee.

"Is that a variant of Lupus?" his resident/intern asked.

"Sometimes we just have to admit that we don't know all there is about the human body. There are diseases out there that we haven't yet identified," he explained to her (and me), after I'd reminded her of my last name and that he was referring to a disease named after me.

****

I'm sorry it's been so long since my last update. I'm still coping with a sinus infection left over from the cold/flu bug I succumbed to two weeks ago. Sigh. I'm not sure if that's the reason I'm feeling as low (or lower) in energy than before the infusions, or if they just haven't kicked in yet.

I went in for my follow-up bloodwork on Monday, and I see the hematologist on May 18 (next Monday) to find out how I did and what he thinks of those ganglioside antibodies that I tested positive for earlier.

Meanwhile, my internist thinks she knows why I've had chronic ferritin deficiencies, and after talking to my OB, I'm scheduled for a D&C and endometrial ablation on June 4. The D&C will remove the three uterine polyps found on a sonohysterogram in March, and the ablation will essentially remove my endometrial lining to my uterus. Without the ablation, the OB says the polyps will almost certainly return within a couple years. And since we long ago decided the chronic back pain from my 2006 car accident (which may or may not have been responsible for the miscarriage I had two days later) meant the end of our hope of having a second child, the fact that the ablation makes it dangerous if not impossible to have more kids is not a problem.

I was actually scheduled to have this procedure back in March 2007. It got postponed originally because I came down with pneumonia. It was rescheduled for June 2007 and rescheduled again because of my second case of pneumonia. And I canceled it from my hospital bed in July 2007, when it became apparent I wasn't going to be healthy enough in the immediate future.

There's a small part of me that keeps thinking that this is the cause of my medical mystery since this was when my body started acting wonky. I've been assured by multiple docs that it's just not possible that it could be responsible for my wide variety of symptoms, but I'm not sure I'll completely believe that until it's done.

Infusions Completed!

2009-04-28T15:02:00.000-07:00

I got my last infusion yesterday, and I guess it's a good thing that it was my last one because I got hives from it. Now to wait and see if they help!

I'm scheduled to visit the lab on May 11, and see the hematologist on May 18.

Meanwhile, I came down with a cold over the weekend, which sucks, but the upside is I don't have to leave the house for the rest of the week. And that is definitely a total blessing after the way I spent most of April.

The Infusion Center

2009-04-24T15:00:00.001-07:00

I know this sounds odd, but I think I'm going to miss the infusion center after I get my last iron treatment next week.

In some ways, coming here (I'm hooked up to an IV with Venofer as I type) reminds me a little bit of what I enjoyed about going to work in an office. I come in, and everyone recognizes me and knows my name. They greet me and kid around with me as I get settled into a recliner and get vitals taken and hooked up to the bags of liquid dripping into my veins.

Then I spend an hour or so on my laptop doing my own thing. I occasionally exchange a quip with someone, sometimes chat a little with the person in the chair next to me, but mostly do my own thing.

When it's time to leave, everyone says goodbye to me, wishes me a good evening and asks when I'm back in next.

It's a very friendly place to be, and I'm convinced that the nicest nurses and medical assistants work in these oncology departments.

*****

I'm feeling very optimistic about these iron treatments after chatting yesterday with the woman in the next chair, who was getting the same treatment. She has some sort of genetic problem that affects her ability to absorb iron from food or oral supplements. (Her mother and aunt have the same problem and have gotten treatments all their lives.)

The woman, whose name I didn't catch, said it usually takes her about a month for the iron treatment to kick in. Then, she said, it's not the lightning burst of energy I was sort of hoping for, but it's a noticeable improvement of everything from attention span to muscle weakness/strength to shortness of breath.

She said the treatments last longer than they did before chemo for cancer put her into menopause. She now gets them about once a year, and previously received them two to three times a year. She cautioned me about letting my ferritin levels get too low; in her youth, she sometimes was in denial and would procrastinate getting them until her ferritin levels were zero and she became anemic. She told me that now that they know I don't absorb iron properly, I should ask to be tested whenever my energy levels start sinking and ask for infusions when my ferritin hits 30 or below.

I'm kind of excited at the thought that maybe some of these symptoms that I thought were caused by my apparent autoimmune disease might really be caused by my iron deficiency. While it's time consuming to commit to five 2-hour treatments, it's still a fairly easy fix if it helps me significantly.

Time will tell.

The reason it takes 3-4 weeks for the treatment to kick in is because it needs to get into my bone marrow, and my bone marrow has to start churning out red blood cells with more iron in them. At least, that's my layman's understanding of what's going on.

Here's hoping that my June is looking way better than my March and April have been. :)

Extreme Fatigue

2009-04-22T16:03:00.001-07:00

Just when I think my fatigue/exhaustion can't get any worse, it does.

It's been a killer couple weeks, and this week is just piling it on.

I just can't seem to cope with having something that needs doing and somewhere that needs being on a daily basis. I'm getting desperate for a full day of downtime, although it's bad enough that I suspect a single day of downtime isn't going to cut it.

Yeah, I guess this is turning out to be a "Poor Aviva" post again. Sorry. But if I don't whine here, where can I whine? :)

I think April 9 is the last day I was able to just veg at home alone, and that was trying desperately to recover from not getting home from seder until 10:30 p.m. the night before. Since then, it seems like it's been one commitment after another, mostly doctor appointments but also some social and volunteer commitments.

So the really weird part? It's getting harder to sleep instead of easier as I get farther and farther past exhaustion. I'm walking around like a zombie, but it's challenging to actually fall asleep when I have the opportunity, and I'm waking up earlier than I'd like and not being able to fall back asleep again.

Don't get me wrong -- I'm still getting 10-11 hours of sleep a day, and I have plenty of friends with young children who would be thrilled to get 8 hours. But since I got sick, I've needed to average closer to 13 or 14 hours a day to feel even semi-functional. And let me tell you, I'm not feeling very functional these days, although I'm going through the motions as best I can.

I'm craving caffeine in a way I haven't in years. (I gave up caffeine when I had chronic peptic ulcers in 2000-04.) And boy do I wish I could still take the Provigil for an energy boost.

I figure if I can just get through the next six days or so, I can crawl into bed and not come out until the following weekend.

In the meantime, I've got those iron infusions Thursday, Friday and Monday. I sure hope they kick in over the next few weeks so I can believe it was worth the time, effort and energy to get them. And money. I don't know yet what they're going to cost us out-of-pocket, but I know they'll cost something.

Thanks for listening, folks. And if you wondered why I have owed you email for weeks now, well, this is my excuse.