Friday, December 26, 2008

Cue the Violins ...

I'm just so damn tired of being sick. And this time of year, it's especially easy to fall into self-pity for all the things I wish I could do but can't or don't.

And the guilt.

I know people make fun of those annual holiday letters that they receive from people they don't hear from the rest of the year. But I actually like them. I love seeing the photos of kids and pets. I like hearing about the vacations people took during the previous year (even if they sometimes provoke envy on my part :). I enjoy hearing about the highlights of people's lives. (It probably helps that we don't get any obnoxious ones, but I'm sure that's because we chose our friends and relatives carefully. :)

Each December, our back door becomes a collage of cards and photos that people have sent, serving the dual purpose of adding some festivity to our decor and blocking the sun, which comes in at a blinding angle during the winter on the rare occasions we actually get sun during a Portland winter.

But I'm noticing that we're starting to get dropped off some folks' holiday card list. I don't blame them -- this is the second year in a row that I had good intentions but never found the energy to follow through.

And it's like one more connection with the "healthy" world at large is getting thinner and thinner.

Everything just seems harder than it should be, and more complicated than it needs to be. Even wrapping gifts was a challenge. I took advantage of all the "free shipping" offers and did almost all the shopping online this year. If it were just Scott and me, I probably would have just resorted to grocery store bags or something. But for my 4-year-old, ripping through the wrapping paper is probably 70 percent of the fun of getting presents. And with birthday and Chanukah gifts to wrap for her, it was a LOT of packages. (She turned 4 on Dec. 21.)

And it bums me out that with Scott and Ellie home full-time for two weeks now, I can't catch up on my energy. I'm just so exhausted, despite the fact that Scott is doing almost all the work of keeping Ellie entertained. I just need more downtime than I'm getting, but I feel guilty whenever I slink upstairs to rest. It doesn't help that the unusual amounts of snow have left us mostly housebound for the past two weeks and unable to have the babysitter I arranged for come over. (I'm hoping if these warmer temps hold up that she'll be able to come over on Sunday or Monday for sure.)

Meanwhile, I've got a busy week next week since all my medical appointments have been rescheduled for two weeks. I see the immunologist on Tuesday for the pneumonia vaccine testing so in six to eight weeks, I can finish the testing to see if I have the immunodeficiency it looks like I do.

And on Wednesday, New Year's Eve day, I will have the endoscopy to do the biopsies for celiac disease as well as checking for new ulcers.

Maybe the new year will bring some answers ...

And thanks for "listening" to my vent.

Friday, December 19, 2008

Snow Week

It's been a hard week.

The snow started in a serious way on Sunday. We live on a street with a steep hill that ends with a stop sign where our street T's into a thoroughfare.

Our first winter in this house, I figured that as a native Chicagoan, I wasn't afraid of an inch or two of snow and set out to go to a class after it had snowed. Despite taking our street at a crawl, my AWD Subaru slid right through the stop sign. I was lucky both that I didn't end up in the ditch on the other side that no other vehicles were coming. It was one more lesson that just because 4WD and AWD can go in the snow or ice doesn't mean they can stop.

So we make a habit of staying home when the roads are snowy and/or icy.

Adding to the decision for my husband and daughter to stay home from work and school were that Ellie's school was closed for most of the week. The public schools were pretty much closed all week too.

I don't really understand why I get exhausted just from being around people (especially my kid, who turns 4 on Sunday). But oh, it was hard.

Add to it that I'm still on what my friend Joan calls a "drug holiday." I like that better than the idea that I was developing an addiction to narcotics. As she points out, it's important to sometimes take a break from medications to see if they're actually doing more good than harm. I've done that with allergy and asthma meds over the years, and always decided I really did need them and benefit from them.

For now, I'm still on my "holiday." But I'm not ruling out a return to pain meds. One benefit of the break is I should see more benefit from a lower level of meds if/when I resume taking them.

Meanwhile, I'm bracing myself for two more weeks of a full house. Ellie made it to school for a partial day today (they opened late and closed early), but school is closed for two weeks now over the holidays. The plan was for our old babysitter to come over for three-hour or four-hour shifts most days during the break, but since we're supposed to get another winter storm on Sunday and the meteorologists are warning of winter weather at least through Christmas, it's iffy if we'll be able to have her over.

Had to reschedule the immunologist again this week due to the snow. I fear I'll have to reschedule my endoscopy if the roads are still snowy and icy on Monday. And the downside to being off the narcotic pain meds is I've had to use ibuprofin despite my history of ulcers, and I'm not sure if I'm developing a new one or I'm being psychosomatic because I have an endoscopy scheduled but my stomach is not a happy camper these days.

Wednesday, December 17, 2008

The Spirit Of The Season

I came across this at Nothing To Do With Arbroath and couldn't resist sharing. :)

Friday, December 12, 2008

This Week's Adventure

Well, it's been an interesting week, although it's ending pretty much the way it started, with no new answers.

This week's adventure started with a toothache. I assumed I had a cavity since I've always had lousy teeth, and my dentist kindly worked me into her schedule on Wednesday despite being fully booked. After x-rays, a dental exam and even looking at my teeth with an ultraviolet light to see if there were any cracks, my dentist told me that my severe toothache was not caused by any damage to my teeth. However, she warned, tooth and/or jaw pain are often an early sign of a heart attack in women, who frequently don't get the more typical pain radiating to their left shoulder. So she recommended, especially with my history of tachycardia (which has been getting worse again), that I follow up with my internist.

Unfortunately, I couldn't get in to see my internist on Wednesday because it was her half day and she was totally booked. So I talked to her by phone, and she told me I could go to the ER if I was really worried or I could wait until Thursday morning and come see her in the office. I went back and forth, both in my own head and with Scott, and ultimately decided to wait until Thursday morning. There came a point Wednesday night when I regretted that decision, but by that point, Ellie was already in bed and there was no one to take me and I wasn't bad enough off to call an ambulance.

Thursday morning, I continued to feel worse, but at that point it seemed just as easy to wait for my 10:45 a.m. appointment. It helped a lot that Ellie stayed home from school that day with a cough so Scott was available to drive me to the doctor.

My EKG came back normal, as always, but my heart rate hit 120 beats per minute during a very slow ambulation and was 108 while sitting still. My internist also did bloodwork, which unfortunately would have gotten results much sooner if I'd gone to the ER but took all day from her office.

So she called me at home around 5:30 p.m. and told me that my D-dimer results were abnormal. Normal levels should be below 0.5, but abnormal results can range from 0.5 to 4.0. Mine was 1.25, not excessively high but enough to want to get checked out. According to, "
D-dimer is normally undetectable in the blood and is produced only after a clot has formed and is in the process of being broken down. Measurement of D-dimer can tell your doctor that something has increased above normal the body's clotting mechanisms."

Off to the emergency room we went, with me wondering if I should pack an overnight bag or not first. Scott and Ellie waited with me for a little while in the waiting room, which was the busiest I've seen, before I sent them home so Ellie could get a good night's sleep. I figured at least one of us should, and I could take a cab ride home. (I'm glad I did that since they didn't finish with me until past 11 p.m.)

So I had a CT scan looking for a pulmonary embolism. I believe they also looked at my legs since they had me going in and out of the scanner repeatedly. The ER doc says my lungs are beautiful, which is always nice to hear. :) No signs of a clot anywhere. But to do the scan, they injected my IV with gell-like iodine, which caused my chest pain to worsen considerably.

But he said that one cause of chest pain like mine can be from esophageal spasms, so they gave me a nitroglycerin tablet to dissolve under my tongue. And apparently, it was a good, fresh, strong nitro tablet because within a minute or two, my head felt like it was going to explode. And I still have a headache from it more than 12 hours later. Made the chest pain feel different, but not better.

Meanwhile, I noticed that while I reclined on the stretcher in the ER, my heart rate dropped to the upper 90s and my pulse ox was a good 98 percent. But if I even just sat up fully, my heart rate would climb to 130 and my pulse ox dropped to the low 90s. Both better stats than when I was admitted to the hospital from the ER in July 2007, but definitely not normal.

But apparently I was the only one concerned about that because not long after I noticed, I was discharged, without even being asked to walk around the ER to see what happened to my heart rate and pulse ox then.

So, I bet you're wondering what's next. Good question!

My internist is seeking pre-authorization from my insurance company to run a stress test on me. Because of my bum knee (which I'm still limping on) and my fatigue and other issues, she wants to do a chemical stress test instead of the more typical variety.

And I am already scheduled for an endoscopy for Dec. 22 to do biopsies for celiac disease as well as for any new ulcer developments. The ER doc thought it would be good for checking out my esophagus as well, and I know my gastroenterologist looks there on his way up and down.

Meanwhile, I'm feeling incredibly lousy, worse than when I went to the ER last night. But I think I'm happy I didn't get admitted since it seems like my hospital experiences are all pretty negative in that I come home in worse shape than I started.

But I'm grateful that they didn't find any blood clots and that I didn't have a heart attack.

Saturday, December 6, 2008

Am I Crazy??

I blame it on the neurologist.

I went cold turkey on my pain meds about a week ago.

When the neurologist told me (through a medical assistant) not to come back to see her until I'd been off narcotics for 30 days, my first reaction was anger. Yes, I understand that pain meds can contribute to my overwhelming fatigue. But it's not like I'm taking them because they taste like chocolate. I take them because I hurt, and my belief is that whenever we figure out how to treat what's causing my overall health issues, including the pain, then the fatigue will go away too.

But then I talked to my internist, who, btw, is amazingly supportive and empathetic, and I think she wishes she could cure me even more than I wish she could cure me. And she conceded that yes, cravings for narcotics can cause all of the symptoms I have, essentially -- not just the fatigue, but also the pain, the fevers, the hot and cold flashes, the general feeling of malaise, and more.

So I cut back, and cut back, and cut back. And did some research online about narcotics addictions and withdrawal, and even took an online quiz to see if I was an addict. (Fwiw, I scored one point out of a possible 15, putting me squarely in the 0-3 category that was defined as probably not addicted but talk to your doctor anyway. I got the one point for agreeing that taking narcotics affects my ability to do certain activities, which for me mostly involves my inability or unwillingness to drive if I've taken any pain meds.)

Of course, my fall on Thanksgiving day meant that I took some more pain meds that day and the next.

But I've pretty much been "clean and sober" since then.

And in some ways it's not as bad as I feared it would be. But I also have only left the house twice in the past week, including my visit to my internist on Thursday.
It's funny the way there's a distinct difference between my knee pain from the fall and my more diffuse joint pain. The knee pain is bad, particularly if I don't keep it elevated and/or try to walk much on it. But, as always, it's really the chest pain (costochondritis) that kills me and makes me want to take something, anything, that might relieve just a little of it. At its worst, it makes me feel like I'm in a bad vampire movie and someone's putting a huge wooden stake through my chest.

So I saw my internist on Thursday and told her what I'd done regarding quitting the pain meds, particularly since I'd done it without tapering as much as I should have. The problem is I can't tell if I'm going through physical withdrawal from the narcotics, or if I'm actually ill and in pain and the narcotics were helping but now they're gone.

She voted for actually being ill and in pain, but agreed it wouldn't hurt anything (except me!) to wait it out at this point, if I can stand it, and see how, if at all, I feel differently once they're completely out of my system, which she said shouldn't take more than a couple weeks total since I was on short-acting narcotics.

The other main problem I'm having is that even though I'm exhausted, I can't sleep. I just can't get comfortable because I hurt in too many places and it's so hard to find a position I can relax in. And even once I do fall asleep, I wake up frequently and have trouble falling back to sleep again. I've been reluctant to take sleep aids, including Benedryl, because I figure if I'm developing an addictive personality, I don't want to transfer my addiction to sleeping pills or anything.

So there you go, my current crisis. :)

Certainly it's hard to argue that it's a mistake to put myself through this if it turns out that it was actually an addiction to the pain meds that was prolonging my illness. But if my doctor, who monitors my usage of pain meds, and I really don't think I'm abusing them, is it really worth the extra stress on myself and my family? Because it is stressful -- I'm cranky and emotional when I'm tired and hurting. And it's definitely worse than it was on the pain meds, so it feels like they were helping me have more of a life than I'm currently having.

So we'll see.

Wednesday, December 3, 2008

Engage With Grace

I've been seeing this web address around -- -- and didn't know what it was about.

Today, I visited the site after coming across a link yet again, this time on CarePages.

The top-level page was sort of confusing, so I decided to click on the video. Which I almost didn't watch when I saw it was an entire 10 minutes.

Engage with Grace from Health 2.0 on Vimeo.

I'm glad I did. I cried through it, since it wasn't hard for me to identify with since Ellie was about the same age as Za's daughter when I got sick -- thankfully not as seriously ill as Za -- and I remember how difficult it was for Ellie when her whole life changed due to my illness.

I encourage you, if you haven't already, to watch the video, answer the five questions, and share the questions with your loved ones. Talk about them, because no matter how healthy you are today, you never know when your health will leave you and when you'll be facing the end of your life. Or when someone you love will be stricken with a catastrophic illness or accident.

It was around the time of the Terri Schiavo tragedy that Scott and I wrote living wills and healthcare powers of attorney for each other. I hope it's many, many years before we need them, but they're signed and witnessed and filed away in our study along side our regular wills. (I should probably put a copy in our safe deposit box too ... I guess that's something to put on my New Year's Resolutions list.)

Tuesday, December 2, 2008

Better Late Than Never

My friend Joan's mom is battling cancer, and Joan recently set up a page over at to essentially blog about her mom's illness and her feelings about it. I'm sad her mom is sick enough that Joan decided to write about it, but I'm glad to have a way to keep up on her mom's progress and health, without having to ask Joan about it too often.

Anyway, I was exploring the public blogs on and found one called The Life of a Well Spouse. The writer mentioned that November was National Family Caregivers Month, which is something I wish I'd known about while it was still November.

While I mostly take care of myself, Scott makes that possible by essentially taking care of everything else. I try to make a point of telling him frequently how much I appreciate all that he does, but I still worry that he needs his own support network, and I'm not sure he has one.

I did find a link to a group called the Well Spouse Association, which I'm pretty sure I've sent him a link to before. Being the spouse or partner to someone with a chronic illness is different than other kinds of caregiving in many ways.

Anyway, here's a belated thanks to all the well spouses who take care of and love their chronically ill spouse.

Monday, December 1, 2008

Let's See If Third Try Is The Charm

I'm going back to the immunologist tomorrow afternoon for the allergy testing to the pneumonia vaccine. If I pass that, then I'll get the vaccine and go back in six weeks to see if I'm as immunodeficient as I appeared to be on the first round of testing way back in June.

I thought seriously about rescheduling this appointment yet again since I'm still pretty gimpy from my fall on Thursday. But I really want to get some answers and this is at least the third time I've been scheduled for the allergy testing. Actually, I think it's the fourth. Every other time, I've gotten sick and he won't do the testing if my lungs are junky.

Anyway, I won't know anything tomorrow -- other than whether or not I actually pass the testing and get the actual vaccine. I don't expect it to be a problem since my reaction back in 2000 wasn't terribly serious.

Happy December!