Tuesday, October 30, 2007

Clueless Therapist

I went to see a therapist this week.

I'm not entirely sure why, but it seemed like a good idea at the time. I started taking anti-depressants a couple months ago when it felt like I'd been sick forever and there was no end in sight. (Gee, sounds kinda the same as now!) They definitely helped with my feeling blue and being irritable and weepy.

But I felt like I needed someone to talk to, and I hate to burden my friends with endless "poor-me" sagas about my health. They're all busy, most of them are moms and some of those moms recently had second babies. And while they're all very supportive and sympathetic, they just don't have time to come over and hold my hand every day or even every week.

So I think I just wanted to pay someone to be my friend and listen while I talked about how hard all of this is and how scary I find the latest developments.

I wasn't looking for someone to "fix" me. But that's what this woman wanted to do, with all kinds of "alternative" healthcare solutions. I know these things work for some people, but I think you have to believe in them for them to help. And I am way too cynical to believe that the reason my elbows hurt is because I need to change directions in my life. Huh? What about people with Rheumatoid Arthritis? Is the miracle cure to all joint pain really in a bunch of affirmations?

She asked me about my coping strategies, and I mentioned this blog as one of them. I think I've written about my life ever since I got a diary for my ninth birthday. (Still have it, but have no memory of who gave it to me.) This therapist couldn't understand why I'd want to write about my thoughts and feelings in a public forum rather than a private journal.

While there are definitely things that I'm not going to put out there where a future employer (or my mother!!) might read them, it does help me to feel like I'm communicating to the world at large even if only a handful of friends and family are reading me. Or even no one at all. It's simply healing to me emotionally to let it (almost) all hang out, in a place where others could read it and perhaps identify with me, to know that I'm not alone in this experience.

And that, I think, is the worst part of being sick like this, the feelings of isolation and being all alone. Don't get me wrong, I know there are many people out there dealing with similar or even much worse illnesses. But when you don't have a diagnosis, you can't even join a support group, online or IRL.

Anyway, I think I found a new therapist to try, and this time I made sure we talked on the telephone for a little while before I made the appointment so I could be sure we had an understanding about what I was looking for and what she could offer. We'll see how it goes.

Wanted: Dream Interpreter. Apply Within.

I had the weirdest dream recently.

I was in a public place (a department store?) and I collapsed and went into what I can only describe as convulsions. I was lucid, but my body wouldn't obey me and my limbs were twitching uncontrollably. I was screaming for help, for someone to call 911, but crowds of people just stepped around me and went about their day.

Finally someone called 911 and the paramedics arrived. They strapped me onto a stretcher and put me in restraints like you see on tv because my arms and legs continued to thrash uncontrollably. I was crying, hysterical.

And then the scene changed, and my best friend Cathy was stroking my hair, telling me to relax, calm down, and everything would be OK.

And then the scene would change again, and the dream would essentially repeat itself, again and again, just in a different locale. Every time, though, Cathy was there, whispering in my ear, reassuring me.

Eventually, Scott woke me in the middle of the night, stroking my arm and asking if everything was all right. Apparently, I was moaning and talking unintelligibly in my sleep, clearly distressed.

The interpretation is probably pretty obvious. I'm clearly stressed out about my illness, about the way my body is out of my control and has taken my life out of my control. But the part that isn't so obvious unless you know the back story is that my friend Cathy died in June 2005 at the age of 37.

Since then, from time to time, Cathy pops up in my dreams. Usually, we both know that she's dead, but we talk around it except for saying how much we miss each other. Sometimes I get a chance to tell her something new that's happened in my life. I sort of think of her as my guardian angel, watching out for me up there.

I'm not normally New Age-y enough to believe in angels or even in any sort of consciousness after death. But Cathy is special, and the only way I could bear it after she died was to believe that somehow, somewhere, she still existed and could still be a part of my life.

The last time I saw Cathy was about a month before she died. It was the first (and only) time she got to meet Ellie. The photo of her holding Ellie is precious to me and I keep it as the wallpaper on my computer. Ellie, who has no memory of Cathy (she was only 5 months old when they met!), recognizes "Auntie Cathy" in photos dating back to our college days and knows that her Classic Pooh plushies and a beautiful Pooh cross-stitch were a gift to her from Auntie Cathy.

Cathy gave me a wonderful gift after that too-brief visit. When we got home from Chicago, I found a chatty voicemail message from Cathy saying how much she enjoyed seeing us and meeting Ellie, how beautiful Ellie was. And then she went on to say how much our almost 20-year friendship meant to her and that she loved me and my family. It was just one of those things that makes your heart smile. I saved the message for a couple weeks before accidentally deleting it a week or so before her death. I didn't know it was the last voicemail I'd get from Cathy, or I'd have saved it forever -- the way I still can't bear to delete her from my cell phone directory or my email addressbook.

I miss my Cathy, as Scott and I have called her since early in our relationship. I wish she were alive, but if she has to be dead, I'm so grateful that she continues to visit me in my dreams. And I know she's doing her best to look out for me and my family and to help us get through this challenging time.

Sunday, October 28, 2007

Out In Left Field

Ok, so I'm mostly done with freaking out over the idea of being checked out for a form of cancer. And I'm definitely done with reading about multiple myeloma on the Web.

Sometimes I think the Internet is a dangerous thing because I get way more information than I really wanted, especially when it comes to a possible diagnoses.

My uncle, who's a retired anesthesiologist and a good diagnostician, assured me via email (in a rather morbid way) by saying, "One would think if you had cancer, it would have done you in by now."

It would have been easy to take that the wrong way, but it made me laugh out loud and even reassured me quite a bit.

It's just so frustrating that after nearly five months of doctor visits, blood tests, MRIs, a bronchoscopy, CT scans, EKGs, echocardiograms, a nerve conduction test and so many different meds, we would know what is wrong with me by now and be treating it and not just continuing to run tests after tests.

It seems like every time I turn around, a doctor comes up with a theory out of left field. First it was "bad asthma." Then my ANA came back positive but just weakly so, and I went to a rheumatologist. What does he think? He thinks it's parvovirus (Fifth Disease) and wants to wait and see if all my symptoms go away.

Yeah, like that worked.

And now this multiple myeloma thing. Am I even old enough to have it? Web sites suggest that the vast majority of people are over 60 when they develop it and over 50 percent are 71 or older. I'm just a kid compared to that.

Meanwhile, I have more tests to look forward to. Oh, joy.

Saturday, October 27, 2007

Email Subscription Works Now!!!

Woohoo! It looks like I've finally managed to get the email subscription working! So if you'd like to keep up with my blog, go ahead and sign up and get new posts in your inbox instead of having to remember to check the webpage!!


Friday, October 26, 2007

A Wrench In the Works

Ok, this is pretty much a repeat for anyone on my email list -- and I suspect that's all who is reading here -- but just in case someone found me by serendipity and has been wondering about the test results, well, here it is.

I had a bit of a surprise a couple days ago when my rheumatologist called me to say that some test results suggested there could be a problem with my bone marrow. He referred me back to my internist with the suggestion that I be sent to a hemotologist for a bone marrow biopsy.

The first blood test was a serum protein electrophoresis, which is used to identify at least two dozen diseases including lupus and RA, and it came back with just a borderline irregularity and the recommendation that it be followed up with an IFE (which I'm not entirely sure what it stands for ... immunofixation something, I believe).

That test confirmed the presence of monoclonal immunoglobulin in my blood, which can be a sign of a bone marrow issue.

I followed up today with my internist, who says that while it's not likely that I have cancer, it's important to rule it out before we go any farther. Specifically, the form of cancer they'll be looking for is multiple myeloma.

She remains convinced, however, that my problem is an autoimmune disease. I asked about starting on plaquenil now just to see if it helps, and she said we had to wait until the bone marrow problem is ruled out because if I do have an issue, it could be a really really bad thing to be on immunosuppressants.

But the fact that my joint pain has spread to the knuckles on my fingers in the past few weeks really just increased her certainty that I've got an autoimmune problem.

I have an appointment with a hemotologist oncologist on Nov. 7. I don't expect her to express any opinions then, just do a patient history and probably repeat the bloodwork that the rheumatologist did to see if it was a fluke.

If I still have the monoclonal immunoglobulin in my blood, she'll most likely order a bone marrow biopsy, and then we'll finally be able to rule out a problem there.

The downside is that my internist says that while it's possible to have these monoclonal immunoglobulin thingies in your blood and not have cancer, it's usually a sign that you're likely to develop it later as you age. Which wasn't exactly what I wanted to hear since I'm pinning my hopes on not having cancer.

Tuesday, October 23, 2007

What Store Sells Patience?

I've been sick now for nearly five months.

It's getting a little old, both for me and for my family and friends. I'm so weary of being asked how I feel, and yet I know it's just people who care about me who are asking and hoping for a little good news.

The hardest part, I think, is not knowing what's wrong with me. We have some ideas -- an autoimmune disease? Parvovirus (Fifth Disease)? fibromyalgia? -- but the answers are difficult to pinpoint.

My daughter was supposed to start preschool this year. Instead, she's in daycare.

My husband doesn't complain (usually!), but I know he has to be getting tired of carrying all of the responsibility for household and childcare duties. We did the traditional vows when we married, including in sickness and in health, but this sort of uncertainty wasn't what we expected in a marriage of two people who like to plan and budget.

I'm waiting, again, for blood test results that might give us some answers. But if the results are anything like the dozens of other results I've had, we'll just end up with more questions.

I'm lucky that I have decent health insurance and some very good doctors, especially my internist, Dr. Lina Takano at The Portland Clinic. When I recently recommended her to a friend who was seeking a new doctor, my friend asked me, "Is she brilliant?" Well, I'm not sure about that -- after all, she hasn't yet figured out what's wrong with me. But more important to me than sheer brilliance in a doctor is one who never rushes me out of the examining room, is willing to listen to all my symptoms and issues and theories and really pays attention to me, and is willing to continue to seek the source of my illness without just writing me off as a chronic complainer. I see her so often and we've shared some details of our personal lives that I sometimes have to remind myself that she's my MD and I'm just her patient, not her new best buddy. :) But a doctor who's really willing to spend the time to listen and really hears what you're saying -- that's priceless.

Meanwhile, I continue to try to build up my ever-shrinking store of patience as I wait for an answer and hope for a treatment plan that will give me my life back and restore my family to normalcy.

What Kind of Blogger Am I? It's Certainly A Question Worth Pondering

I was checking out a blog I'd seen mentioned on a blog I like, which led me to yet another blog in what seemed like a neverending stream. Finally, I got to the source of what looked like a fun quiz to determine what type of blogger I am.

Coincidentally, or so I wondered, the stream of blogs that led me to the source of the quiz had all earned the title of "Pundit Blogger -- Your blog is smart, insightful, and always a quality read. Truly appreciated by many, surpassed by only a few."

You'd think that would be an honor, right? And as such a novice blogger, I certainly didn't expect to reach that high summit of bloggers.

But I did. Who knew? (Although with only a handful of posts under my belt, I'm fairly confident that I am not yet "appreciated by many." But who knows, maybe fame and fortune as a blogger -- is there such a thing? -- is in my future!)

After 15 years in the news biz, I'm enough of a cynic that I was suspicious that it didn't matter what I answered on the quiz -- that everyone got the same result.

I tested it by taking it again and answering with what I thought were the most obnoxious possible responses. And you know what? It did come up different. So much for my nose for a fraud. :)

Anyway, if you like taking fun, frivolous quizzes about a wide variety of topics -- including what kind of blogger you are -- check out http://www.blogthings.com/. You can find out everything from what kind of kisser you are to whether you fight fair to what kind of breakfast you are. (I'm not sure I really understand the last one ... )

Monday, October 22, 2007

A New Perspective

One of my guilty pleasures lately is watching Oprah.

I try very hard not to watch daytime television despite being home all day alone because it was hard to kick a 20-year soap opera addiction. But I figure Oprah is different. And hey, I deserve to do something I enjoy while I'm stuck in the house.

Today's episode featured two people who know they are dying of cancer but still manage to embrace a positive outlook while not denying the inevitable. Talk about courage.

I was especially moved by Randy Pausch, a father of three kids under the age of 5 who has been told he has 3-6 months to live before dying of pancreatic cancer.

He said professors always talk about the "Last Lecture," what you would talk about if you knew you were about to die and wanted to have meaningful last words.

He gave that last lecture at Carnegie Mellon, where he is on the faculty, in September. Of course, it's been posted to YouTube.com, and probably a hundred other places, and has been viewed over a million times.


His topic was about how to achieve your childhood dreams. He admitted that one of his dreams -- of being a professional football player -- never came true. But he did become an Imagineer for Disney, something he vowed to do after his first visit to Disneyland. It didn't happen on his first try. Or even his second. But he kept those rejection letters around as inspiration, and eventually the Mouse came to him and he achieved a dream.

He says that lecture was more about leaving something for his young children than for his students or any of the rest of us. But I'm far from the only one taking away a lot of meaning from it.

If you haven't already seen it, check it out. Search his name on YouTube, watch the entire hourlong lecture (including lots of people talking about Randy) at Carnegie Mellon's site, or see a shorter version he did on Oprah today here.

Meanwhile, I'm going to work on being more of a Tigger than an Eeyore.

Saturday, October 20, 2007

A New Milestone

Well, I've reached a milestone -- one that I didn't expect to hit for at least another 30 or 40 years.

My doctor authorized me for a temporary handicapped parking pass.

The few times I've used it so far, I've felt really weird about it -- like people are going to look at me and think I'm using someone else's pass since there's nothing obvious wrong with me.

I also think it's ironic that twice now I've parked in a handicapped spot, only to discover as I'm on my way to the building that there was a non-handicapped spot that was open that was closer to the entrance than where I parked.

My pass is set to expire in April. Six months is the longest that Oregon authorizes temporary passes, and I certainly hope that I'm well long before then. But seeing it dangling from my rear-view mirror, with the month and year of expiration punched, it strikes me as so arbitrary since my many doctors can't tell me when I'll feel better or even whether I'll ever be "back to normal" again.

After getting the pass, I accompanied my husband and daughter to Costco, where we parked in a handicapped spot and then I borrowed one of Costco's electric scooters since I knew I didn't have energy to walk around the entire store.

My daughter, who will be 3 in December, thought it was so cool, and of course she wanted to ride on my lap. I suspect just being there would have worn me out anyway, but having to try to steer while she was trying to turn the wheel back and forth all the time was enervating.

I did find it interesting how different a store looks from a seated position. I had trouble finding items that are normally so obvious, but now they were above my line of vision. It was also interesting to have to turn my head to look since I couldn't turn my body to face the shelves. I wondered if that was what it's like to be in a wheelchair.

Monday, October 15, 2007

How Can I Call Myself A SAHM If My Daughter Is In Fulltime Daycare?

I never planned on being a stay-at-home mom.

For many years, I had no interest in having children. I loved my job with the AP with a passion and was focused solely on building my career for many, many years.

Even when Scott and I got married in September 2001, we were both sure we didn't want kids. We liked our life together the way it was, with plenty of money and time for the hobbies and "toys" we loved.

Maybe it was my biological clock that started ticking. Maybe it was his. But somehow -- after going back and forth for awhile based on whether we'd most recently seen cute kids or screaming, tantruming kids at Costco -- we both got on the same page again in 2003 and decided to start a family.

Even then, though, I had every intention of continuing to work out of the house at least part-time.

Then Ellianna was born, and everything changed.

The AP had a very generous maternity leave plan (thanks to union negotiations!), and I had 9 weeks paid and then could take off up to 18 months unpaid and they would guarantee me a job.

Initially, I said I would take 6 months unpaid time for a total of the first 8 months of Ellie's life. And then Scott got laid off when Ellie was 4 months old and was off work for nearly 4 months. When he finally got a job offer, it was a contracting job that didn't offer benefits so we had to continue to pay $1,200 a month for Cobra benefits. That was a lot of money, so I started negotiations to go back to work.

The bureau chief refused to make things easy for me and denied my request to work only evenings and weekends so Scott and I would be able to juggle our schedules and keep Ellie out of daycare.

Finally, I was willing to relent and made an appointment to discuss my return. Still being difficult, the bureau chief made me wait nearly a week before he would see me. And the day before our meeting, Scott was offered a direct hire position at the company he was contracting for, and it included full benefits and a huge raise over his previous job. Boy was I smiling when I went into the bureau chief's office and said our need for insurance had changed and I was going to extend my leave to the maximum 18 months! Of course, then he offered me the evening/weekend schedule I'd requested initially, but I turned it down. And when the 18 months was up, I turned in my resignation. The job had stopped being fun when he took over the bureau, and I was thrilled we could afford for me to continue to stay home with Ellie.

And then I got sick.

And then when I got even sicker, and it was clear I couldn't take care of Ellie anymore, we had to put her in daycare. This was a child who had only been left with good friends as babysitters, and even then fewer than a handful of times. And now she leave by 6:30 a.m. and doesn't get home until nearly 5 p.m. And that's every single day.

Slowly, she's adjusting. Slowly, I'm adjusting. Slowly, Scott is adjusting.

But now when people (usually doctors or nurses since I'm not out-and-about anymore other than for medical appointments) ask me what I do, I don't know what to say.

Yes, I'm still a mom, and I'm still staying at home, but I'm not exactly a SAHM anymore if my daughter isn't home with me.

I hesitate to call myself a homemaker when my husband does virtually all the household chores, including the cooking.

So what am I now?

Sunday, October 14, 2007

The Start of a Slippery Slope

I knew turning 40 was a milestone, but why did no one tell me that my birthday marked the end of my body's warrenty?


I turned 40 on March 3, and a couple weeks later came down with a killer cold. A few weeks after that, I'm feeling worse and head to a Doc-In-A-Box, where I'm diagnosed with bronchitis and a sinus infection and prescribed antibiotics and Prednisone.

Back to a different doc a week later, and my diagnosis is upgraded to pneumonia although no chest x-ray was taken. "Why bother?" the doc asked. "I'd treat you with the same meds no matter which you had."

By the time I'm feeling like myself again, it's mid-May. And then just a couple weeks later, on June 1, I'm sick again and, so far, it looks like my life will never be the same.

It started with a sore throat and mild fatigue. I wasn't too worried about it since both my daughter and husband had gotten sick with the same initial symptoms.

It was a busy time -- our house was on the market and we had an open house scheduled for June 3, and then we were flying to Chicago to visit my family on June 5. Or at least that was the plan.

We got through the open house, which attracted disappointingly few visitors and no offers. But early in the morning on June 5, I woke up and was freezing. I was so cold, even huddled under the blankets, that I trembled. That lasted about three hours, and then, just as suddenly, I was drenched with sweat and was burning up . My head hurt so much I thought it was going to explode.

The alarm went off, and I discovered I literally couldn't even sit up in bed, much less get dressed, navigate the airport and keep a toddler entertained on a plane for four hours. I had my husband call to cancel our airline tickets and hotel reservations, and call my parents to tell them we were too sick to fly.

I couldn't pull myself out of bed until about 4 p.m., about 14 hours after the illness had hit in force. I probably should have gone to the hospital that morning, or even later that day, but, ironically, I felt too sick to go to the ER. When I finally went to the doctor three days later, on June 8, I was diagnosed with pneumonia in both lungs after a chest x-ray and prescribed antibiotics. I went back on June 15 with no improvement and was put on Avelox, a strong antibiotic that's used for respiratory illnesses, and Prednisone again.

When I returned on June 23 still feeling very sick, a chest x-ray showed the pneumonia was gone and my internist assured me that I would be feeling better soon. Pneumonia, she said, took up to a couple months to recover fully from but I should start feeling better soon.

In the meantime, I was still home alone with my daughter. Too sick to go anywhere and chase after a toddler, I let her watch much more Little Einsteins and Dora the Explorer than I felt comfortable with. But I was exhausted and short of breath, and when I spent more than a few minutes on my feet, I would get dizzy and, several times, even black out.

On Monday, July 9, I told my husband I was too sick to go shopping with him to Costco and asked that he stop on his way home from work and grab a pizza for dinner along with items on our weekly shopping list. When he got home, the three of us ate some pizza and then I had to lie down. I asked Scott how I would know if I were having a heart attack -- I was having severe chest pains, shortness of breath, sweating, headache and left shoulder pain (but I always had pain in that shoulder from an on-the-job injury in 1995). He pulled out a self-help book published by the Mayo Clinic and went down the list of possible symptoms for a heart attack. I had many if not all of them. So at 7 p.m., with a tired 2.5-year-old in tow, we headed to the ER, where they quickly determined with an EKG that I was not having a heart attack. Thank goodness!

But they admitted me anyway, after numerous nebulizer treatments, because my lung capacity was poor, my heart rate was sky high -- especially when I walked it would reach upwards of 200 bpm -- and my blood oxygen would plummet to 70 percent when I moved.

After an 8-day stay in the hospital, three EKGs, two echocardiagrams (one as a "bubble test"), two CT scans of my lungs, one with contrast, and three days of being monitored 24/7 on the cardiac care floor, they decided that whatever I had wasn't going to kill me anytime soon and sent me home. To a house with two flights of stairs before I would reach my bedroom, which I initially had to crawl up with frequent stops because I was incapable of walking up.

To sum up what's become a way-too-long and detailed story, I have consulted a pulmonologist, who did a bronchoscopy and declared my lungs pristine; a cardiologist, who said there was nothing wrong with my heart despite my rapid heart rate; a neurologist, who performed a nerve conduction test and then declared me normal neurologically; an endocrinologist, who declared my longtime hypothyroidism under control despite my hair falling out by the handful; my internist, who ran blood tests that showed a low-positive ANA (18), a moderate positive anti-Cardiolipin test (49), and a rather, but not extraordinarily, elevated SED rate (78). She says the combination of these mean I have an autoimmune disease, but she hasn't a clue which one. I tested negative for all the Lupus-specific tests.

When I consulted a rheumatologist, he was fascinated by the fact that I tested postive for Parvovirus, commonly known as Fifth Disease. A very mild rash in children, it is rare for adults to catch it because most are already immune from a childhood infection. Until recently, it was thought to be just as mild for adults, but it has now been linked to myocarditis, an inflammation of the lining of the heart, and my internist says serious research is being done to look into what else it might cause.

So, while I wait for my doctors to stick a label on me and finally start treating my illness instead of just giving me pain killers, I've basically been put out of work. How can I be a stay-at-home mom if my only kid is now in full-time daycare because I can barely take care of myself much less a toddler? And while I'm blessed with a husband who is lucky enough to earn a high enough salary as an electrical engineer that he can support our family on only his income, our budgets didn't include a line-item for $300 per week daycare bills.

And what was it about turning 40 that made my body decide to stop working properly? It's silly, I realize, but I can't help thinking I wouldn't be so sick if I were still a thirtysomething ... which is ridiculous because, unfortunately, there are many, many thirtysomething people out there who are battling cancer, getting injured in this neverending war our country is in, and coping with their own chronic illnesses.