Thursday, February 28, 2008

I Hate This Connective Tissue Stuff!


Went to the ENT today, who said my ears, which were still mildly infected last Friday, look clear today and are definitely no longer infected. He did say that my eustachian tube in my left ear moves irregularly when I breathe and might require having a tube put in my ear at some point. But he says I'm not there yet.

The ENT thinks that at least part of my pain is being caused by my TM joint which, as you know, is just in front of the ear. He says that they're so close together that it is common to mistake pain in the joint for ear pain. It is true that when I open my mouth wide, I get a painful popping sensation in my ear.

But the TM joint issue doesn't explain why I get severe pain when my ears pop from sneezing or blowing my nose. That's when he mentioned the irregularity with my left eustachian tube.

And there are times, like this, that I hate it when my husband is right. The ENT says there is quite a bit of connective tissue involved in the ear (as well as in the TM joint) and this could quite likely be related to my connective tissue issues.


So he recommends that I go talk to my dentist (who I see March 6) and my rheumatologist (who I see March 11) about this and see what they say. In the meantime, he suggests taking ibuprofin, which I'm not really supposed to take because of my past history with ulcers.

This illness is just so irritatingly complicated, and I'm feeling really frustrated about this latest development.

Wednesday, February 27, 2008

Is There Connective Tissue In Ears?

I have essentially had an ear infection since at least Feb. 1, although I think I started noticing ear pain a day or two before that and it wasn't officially diagnosed until Feb. 2.

I've done two rounds of antibiotics -- first a Z-pack and then Levaquin, which I just took my last dose of yesterday.

Then last night (late afternoon, early evening), when my ears have typically intensified in pain, it started feeling like my ears were exploding whenever I sneezed or blew my nose. And with year-round allergies, I do that more than the typical person even when I don't have a cold. (Which I don't right now.)

When I told Scott, my husband, about it, he asked if there was connective tissue in the ear canal and whether the ear pain could be linked to my underlying illness.

My first response was, "Nah!"

But now I'm wondering. Because essentially when they look in my ear, they tell me it's red and inflamed. Isn't that essentially the problem that's causing my other aches and pains? Although most of the places I hurt aren't as easy to look inside of as my ears.

I go back to the ENT tomorrow because he didn't want to just call in a new prescription of antibiotics for me without seeing what was going on in there. Although he just saw me last Friday and at that time declared I still had a double ear infection, although he said it looked mild at that time. (When I was diagnosed and had what I thought was excrutiating ear pain, the doctor I saw at urgent care said it was only a moderate infection. I sure hope I never have a severe one if that's what a moderate one feels like!)

Scott's theory would explain why two rounds of antibiotics haven't worked too well for me ... but I'm hoping it's just a "normal" ear infection and it's just my compromised immune system that's making it take longer to heal it up.

Tuesday, February 26, 2008

The Spoon Theory and More About Hearing Issues

A few years ago, I was looking on the Web for more insight into my mother's illness, myasthenia gravis, in hopes I could understand a bit better why sometimes she seemed fine and other times couldn't even come out to dinner at a restaurant.

At the time, I thought I understood fatigue, but as I've since learned, there's fatigue and then there's fatigue.

Anyway, I came across a really cool site called But You Don't Look Sick, and while browsing it, came across an essay written by a woman with Lupus who is trying to explain to her best friend what it "feels" like. Please read the full essay here. Seriously. I'm going to summarize, but it won't be as good as the full essay.

At the time, I had what Oprah calls "An Aha Moment." Or so I thought.

In the essay, Christine Miserandino writes compares having an illness like Lupus that affects your energy levels to having a specific number of a concrete object (you could use poker chips, pens or anything, she uses spoons in her metaphor) that you have to "spend" to get anything done. Healthy people have, if not a limitless supply, almost as many as they want. People with this type of chronic illness, or my mother's myasthenia gravis, don't. We have a very limited number, far fewer than we had before we got sick, and when we run out, that's it. And of course, some days, you have fewer than others. (Boy, have I been feeling that one lately. I went to a friend's 3-year-old son's birthday party on Saturday and got so wiped out that I'm still recovering on Tuesday and don't think I've made it out of my pajamas yet.) (Ok, actually, I've changed pajamas several times so I'm not in disgustingly dirty ones, but still just wearing PJs. It's all I can manage. I even went to the acupuncturist in my PJs today. Hey, it's Portland. No one cares.)

Anyway, I came across the link for The Spoon Theory when a friend sent me a link to a page her partner (also a friend) had set up to remind friends and family and others how to best communicate with the hearing impaired. (You can read it here.) Most of it was stuff I already knew -- my mom is deaf and I grew up with a lot of what's listed. But I'm not all that used to thinking about those tips in relation to me. Especially the parts about making sure you have someone's attention before talking and the part about facing the person you're talking to.

I generally don't have problems if I know someone is talking to me and I'm concentrating on the conversation. But if I'm doing my own thing in the family room and Scott starts talking to me from the kitchen (which is all one big room, but opposite ends), I don't always realize that his words aren't just more background noise that I've got going in my head. And the other day, we were all in the kitchen but Scott was making his lunch for the next day so he was facing the counter and had his back to me. He had to repeat what he was saying three times before I caught the gist. Following the tips on that webpage would solve these problems. Assuming we're always perfect and never forget. :)

Friday, February 22, 2008

Update on my Hearing Loss

I had a hearing test today and a visit with the ENT to discuss my hearing loss apparently caused by the mega-dose (4500 mg per day) of Salsalate, which I'm told is essentially a form of aspirin, my new rheumatologist put me on last month. The goal was to reduce my inflammation and hopefully get my pain levels down. (I have a history of developing severe stomach ulcers from more conventional NSAIDs, even the ones that are supposed to be gentle on the stomach like Vioxx and Bextra.)

I really had only very small positive results from the Salsalate. My joint pain decreased ever so slightly while I was on it, and some of the swelling on the pads between my knuckles appeared to get very slightly smaller. It was such a minor decrease in the swelling that I was never entirely sure whether I was imagining it or not.

So I wasn't experiencing great benefits from it, and I ended up having very major side effects in that it made me *very* hard of hearing to the point that I couldn't understand anything my 3-year-old daughter, Ellie, was saying. Dr. Wernick had told me that the tinnitus and hearing loss that are common side effects of the drug would be mild and fully reversible when I stopped taking it.

But my hearing loss was pretty severe. (See here for my post on how bad it was getting before I stopped taking it.) And then my internist, who I have immense respect for, told me she wasn't sure the hearing loss was reversible like the tinnitus. My Uncle Doc then expressed the same concern.

So when my prescription ran out, I didn't immediately refill it and went in to discuss the issue with my internist again. She agreed the med hadn't done me much good and said that since it simply treated a symptom of my illness, not the disease itself, there was no harm in stopping it. In the meantime, she scheduled me for a hearing test and an appointment with the ENT I've seen occasionally before.

Within days of stopping the Salsalate, my hearing improved. Complicating matters, I got that horrible bug going around and ended up with a diagnosis of a double ear infection (and bronchitis and laryngitis).

Anyway, I had the hearing test today. I had my hearing tested about a year ago and was told it was very, very mild then and was technically within the range of some people's normal hearing.

Today, I was told that my hearing loss had increased significantly and I now had moderate hearing loss. The audiologist said my hearing loss is concentrated on the frequencies people speak at, which is why I find it so frustrating. She also said the pressure in my left ear was negative and the ear drum was barely moving.

Following the hearing test, I saw the ENT. He said that the issue is complicated by the fact that I still have a now mild ear infection (which I pretty much knew since I still have ear pain at night and often have to sleep propped up). I'm on day 6 of a 10-day dose of Levoquin, which is my second round of antibiotics, and he told me to continue with that and also continue with the same dose of Prednisone I'm on (10 mg per day).

He wants me to come back in June for another hearing test and office visit, at which time he hopes to be able to determine if my current level of hearing loss is permanent or if there's more improvement once the ear infection is completely gone. He also told me to stay off the Salsalate because it can cause permanent hearing loss at the kind of dose I was on in people who are sensitive to it, as I apparently am.

On a side note, he said that the polyps he discovered in my nose when I first saw him over a year ago have gotten even bigger. They initially shrunk enough while I was on high doses of Prednisone last year that he decided I didn't need surgery to have them removed. But he's now concerned about their size and says they contribute to the frequency that I get colds and sinus infections. He did note, however, that I "have a lot going on right now" and that they are not an urgent matter that I need to take care of. He also said I have a severely deviated septum, which I have no memory of him telling me previously but he says he did. For whatever that's worth. It probably means I'll eventually have a minor outpatient surgery, but I have no plans of doing that anytime soon. Maybe in a year or two.

Thursday, February 21, 2008

A Gentler Dental Experience

On Tuesday, I finally went in to see the dentist about one of the two cavities that they discovered during my cleaning back in December, when I had an awful experience with the Dental Hygienist From Hell. I wrote about her here.

I'd made a point of talking to the dentist by phone after I procrastinated for a month on making an appointment for the fillings because I was traumatized and in such jaw pain. Apparently there had been other complaints about this dental hygienist, and the dentist assured me that she would accommodate my needs so I could get my dental work done. And she also promised that she would put in my file and in the computer system a note that I should never be scheduled with that hygienist ever again. (Why they haven't fired her if they keep getting complaints about her, I sure don't know.)

And the dentist did just as she promised when I went in on Tuesday, and her assistant was sympathetic and very accommodating as well. Both cavities are in the left side of my mouth, and I had planned to have the larger one done first. But that one was in the farthest back upper molar. Since my ear infections continue to linger, the dentist was hesitant to work on that one since I'd need to be fully reclined and possibly even with my head lower than my feet. My ears are pretty painful when I recline, so I was happy when she suggested doing the smaller cavity in the bottom molar that's second from the last.

Not only was the work done faster than the other one would have been, but she drilled primarily from the outer edge of the tooth, so I didn't have to open my mouth as wide as I'll need to for the top molar.

Anyway, I had been really worried about this for awhile, and it was quite a relief that it went better than I feared.

I don't know that it had anything to do with it, but my acupuncturist had put a teensy bandaid with a radish seed in it on the pressure point on my ear lobe that she says corresponds with jaw pain. She told me to press on it periodically that day. She was very happy when I reported back to her during today's appointment that I had no jaw pain after the dental work. It may have been a placebo effect, but I'm perfectly happy with placebo effects if they make me feel better. :)

Friday, February 15, 2008

Off Topic: Organ Donation

I've been seeing the ads on television, and maybe even in the newspaper, about the new online registries to sign up to be an organ donor.

I've had that D on my driver's license for years, but apparently that isn't considered informed consent and your next-of-kin is still faced with the hard decision of what to do at a time when they're in a great deal of emotional pain.

When my best friend died suddenly (and WAY too young) while on a business trip to Canada in 2005, her family honored her wishes and had her organs donated. At her memorial service, I heard stories about how the people at the hospital were so blown away that her family not only donated her organs, but donated them in Canada to Canadians even though they were Americans. (I don't even know if taking them across the border to the U.S. was even an option.) I think that took a special kind of grace to make that kind of decision while in intense shock since there hadn't been any hints that she had any problems with her heart or other serious illness.

I've made a point of making sure that Scott, my husband, knows my wishes, and I think I've told other family members too. But it wasn't until I got my daily post from The Happiness Project that I sat down and did it right away.

And if you haven't signed up on the registry and want to be a donor (you can limit what organs/tissues/etc you donate), please do so right away. G-d forbid that you or your loved ones will be in a position to donate anytime soon, but there's such a shortage of organs available. And wouldn't you want your loved one who needed a transplant to have a better chance of receiving one before it's too late?

If you're in Oregon or Washington state, go here. If you live elsewhere in the country, find your state's registry here.

I have to admit I hesitated about whether I was willing to donate skin, although Jews don't have open caskets anyway so it's not like anyone is likely to see me. I just find the concept a little squicky. But then I thought about the world of difference it could make for a burn victim, and I unchecked the box that would have refused it. For what it's worth, the FAQ says that even if you do donate your skin, it's still possible to have an open casket. (This is getting morbid, but I guess they leave it on your head and probably hands too so the parts people would see still look normal.)

State laws differ on whether family members can overrule your decision to donate once you're on the registry, but at least it's a clear way to indicate your preference down to the detail of exactly which parts you're willing to donate.

If you're not sure how you feel, at least go to the site and read the FAQ. If you still have questions, there are numbers for people you can call to discuss it. (At least on the NW page. I assume on other state/region pages as well.)

The Slippery Slope

Things are seeming awfully familiar as my aches and pains come back.

It's funny that they don't all come back at once, and they're returning pretty much in the same order that they started in. First my chest pain started again, but I blamed it on the lingering cough I have from the bronchitis of a couple weeks ago.

Then my hands and wrists started hurting. I tried blaming that on the valentines I had to help Ellie with for her class at school and the birthday party thank you notes that I'm still slowly working on.

They've all been getting worse, and tonight at dinner I noticed that my elbows are tender if I put them on the table again. (I know, it's rude to put your elbows on the dinner table! What can I say? My manners are imperfect. :)

And I'm again waking up in the night frequently because I get too achy being in one position for very long.

And the fatigue has been building all week long. I'm not (yet?) as bad as I was at my worst, but I'm sad that I seem to be headed back in that direction. :(

On a positive note, my hearing has improved as my ear infection clears up. (And the acupuncture has been noticeably helpful in dealing with the feeling of fullness in my ears that I'm assuming is the fluid build up my doc saw last week.) But I'm having more frequent tinnitus and it's still not where it was before the Salsalate.

I didn't have tinnitis at all before the Salsalate, so I sort of blame it on that although I guess the ENT will tell me next week if it's related to the ear infections or the meds.

Wednesday, February 13, 2008

A Downward Slope

Well, I fear that it was more of a fluke than a new trend, this feeling better thing.

Monday was a pretty great day, and when Tuesday wasn't as good, I thought maybe it was because I overdid things on Monday. But I was very careful not to do so on Tuesday, and today was even worse than yesterday with increasing fatigue and joint pain.

I'm a bit bummed.

On the other hand, perhaps this is the road to recovery, with improvements followed by some backsliding followed by yet more improvement. I hope that's what it is.

I guess since this illness hit me virtually overnight, I keep thinking that it will leave the same way it started. But I suspect that's wishful thinking. I don't think that's really the way chronic illnesses work.

Tuesday, February 12, 2008

Update on Airlines

This is a long overdue update on a post I made in November asking why airlines aren't more supportive of people with unanticipated illnesses.

In late November, American Airlines sent me a voucher for the total cost of the three airline tickets we bought for a trip scheduled for Labor Day weekend. That was incredibly generous. It gives us until next November to apply it towards tickets, either for us or for anyone else we choose to buy tickets for. The voucher isn't transferable, but we're not limited to buying tickets for us.

That's great since even though I'm (*knock wood*) showing signs of getting my illness under control, I'm not sure when we're going to be ready to tackle the stress of traveling. I've already told many family members not to expect us to be traveling this spring/summer, even though that means missing a much anticipated double bat mitzvah and visiting friends and family in Denver in May and our annual trip to Chicago to visit my family.

In the letter of thanks I wrote to American Airlines, I vowed that they would be my airline of choice in the future because of their generosity. I can't swear that I'll always fly them; their schedule in and out of Portland to the places we fly most often is very limited. But when the schedule and ticket prices allow, I'm going to be leaning toward flying American in the future.

I remain very disappointed in United Airlines, which had long been my favorite airline and the one I chose unless there was a major price difference with another airline for when I wanted to travel. But there were many times when I paid slightly more simply to fly the "Friendly Skies."

But I guess they're only really friendly when you don't suddenly come down with an illness or other health problem that won't let you fly for a long time.

I'd bought tickets last year on my birthday (March 3 :) to fly to Chicago for my niece's high school graduation last June. Although the three of us had some symptoms of illness, it was nothing that was going to interfere with flying (or so I thought) and I even checked us in on the Web on June 4 for our June 5 flight.

Of course, those of you who have been following my story from the beginning know that I got seriously sick essentially overnight and was physically unable to get out of bed the morning of our scheduled flight. I very carefully made sure my husband called the airline to cancel our tickets, knowing that if you don't call before the flight leaves, your tickets become worthless. (At that point, I assumed I was going to be better within weeks if not days.) He made all the calls -- airline, hotel, rental car -- while I laid in bed feeling like death. I remember thinking I should go to the hospital but deciding I was too sick.

Anyway, to try to summarize, when I followed up with United several months later, I discovered that because I'd checked us in on the Web, their computer said we had traveled to Chicago as planned and just never flown back. Weird. You'd think with all the Homeland Security stuff that their computer would have noticed that although I'd checked in on the Web (and not at the airport!), we'd never boarded the plane. Aren't they supposed to match that stuff up so that terrorists can't check baggage with bombs and then not board the flight? Why bother scanning our boarding passes when we get on the plane if they don't update their computer to show who boarded and who didn't?

I was told to put it all in writing to their customer relations department, which I did. And I essentially got a form letter back that didn't address any of my specific points, including the missing credit for the outgoing part of the tickets. It repeated the standard line about how generous the airline is to allow non-refundable ticket holders to pay a fee to change the flights to a day/time that must be completed by the one-year anniversary of the original purchase date.

In other words, by my birthday a few weeks from now. I can't even imagine having tried to fly anywhere this month or the previous nine months!

In my letter, I included a note from my doctor explaining that I was too ill to travel and would be for an unknown length of time. I had hoped to be allowed to transfer the credits to my brother and his family so they could visit us in Portland.

Of course, the standard procedure says that those ticket credits are non transferable. I even asked if they could be donated to a charity like the Make-A-Wish Foundation if I couldn't use them so someone else could. But no.

Perhaps the problem is that I don't fly often enough. My brother, who is a "premier level" member of their frequent flier program, has always had his fees waived for changing flights due to illness. (And, in fact, the reservations person I spoke to last September told me that the airline usually waives those fees with a doctor's note.) But not for me. The form letter I was sent said the airline never makes exceptions for those fees.

I understand that those rules are important for the airline. But it seems to me that it's good business practice to acknowledge that sometimes, just sometimes, there are circumstances that call for exceptions.

American Airlines understood that. And they have earned my future loyalty.

I remain disappointed in United Airlines. Not only could United not acknowledge my extenuating circumstances with generosity like American, but they could not even address my issues in a non-form letter. I have frequent flier miles with them that I certainly intend to use, either for my family or to fly relatives to visit us, but they have lost my loyalty after many years of choosing them first.

Monday, February 11, 2008

A Good Day

I don't know if it's just the difference of being over the virus I had vs having the virus on top of my "usual," or what, but today was a really good day.

It's the first day I've felt essentially over the nasty bug that gave me the ear infections, bronchitis and laryngitis. I still have a sore throat that feels worse at night and first thing in the morning (at least it did last night and this morning), but I've had an amazingly good day with more energy than normal and less aches and pains.

I'm biting my lip and crossing my fingers that I'm not jinxing myself for even mentioning it since it seems like whenever I say, "Gosh, I'm a little better today!" to anyone it boomerangs and I end up feeling worse.

But you know, I got up to see Ellie and Scott off on their day. I usually linger a little while with the newspaper before going back to bed on Mondays because it's garbage day and they come between 6 and 7 a.m. and I can't sleep with all that noise anyway so why lay in bed for it? But then I picked up the novel I started last night (Water for Elephants -- a wonderful read that reminded me of my grandfather a lot, although he never worked in the circus :) and next thing I knew, it was 9 a.m. I figured since I was awake, I'd make some of the phone calls on my list for today, and then I filled out an application for a preschool for next year for my daughter. Read a little more in the novel. Was chilly and thought about turning the heat up a little but then realized that was silly since a more eco-friendly solution was to go get dressed in something warmer than my jammies so I got fully dressed.

Then I was hungry again, and I looked at the clock and it was a little before noon, so I figured it was lunch time and heated up some leftover beef stew my husband had made for me when my throat was so raw that I couldn't eat dry food hardly at all.

I've occasionally had mornings like that since I got sick, but when I do, typically that means I crash and sleep all afternoon (which backfires because it sets me up for a restless night although I can sleep until noon and sleep find that night).

But not today. I decided to hand deliver the preschool application and deposit since the school fills up quickly. Then I hit the pharmacy for some meds. (How come even when I feel good, there's always meds that night picking up?!) And on the way home, I stopped at the library to drop off some materials due in a couple days and pick up a DVD ("Knocked Up" with Katherine Heigl) that was waiting for me.

I was out and about for 90 minutes, and yeah, I was tired when I got home, but I wasn't entirely wiped out the way I'd normally be after doing just half of that. And I was even good and parked in non-handicapped spots everywhere, forcing myself to walk a little farther, and I still didn't have to head straight for bed.

Now I'm just hoping it won't turn out that I overdid things horribly and I end up back in bed for a week. :) But so far, I'm tired, but not too bad. And I barely took any pain meds today either, and I seem to be doing OK.

I don't know what it means. I've had occasional good days and even, once, a good week since I got sick last June. But it's been a long time since I felt as good as I did today.

And G-d, I pray that it lasts.

Saturday, February 9, 2008

Still Trying To Shake This Ear Infection!

My ear infections are still so lousy that it's hard to know exactly how bad my hearing is these days.

Actually, I guess I don't know for sure that there's still an active infection going on since it's been a few days since my internist peered in at 'em, but they're definitely still full of fluid and affecting my balance as well as my hearing.

I've got a new antibiotic waiting for me at the pharmacy, which my internist hopes will help clear the ears. I learned something new when she was telling me about it -- apparently ear infections are considered upper respiratory infections. I know the ears and nose and all that are all connected, but I don't think of my ears as having anything to do with my ability to breathe. It sounds like some kind of Yoga thing to be able to breathe through your ears. :)

So hopefully I'll get those picked up tomorrow and started on, and then we'll see exactly where my hearing is these days after cutting out the Salsalate.

I also still have a killer sore throat, but after two negative throat cultures, my internist said current research suggests that many of these lingering sore throats are actually fungal infections so I'm going to try some antifungal meds for that too. You take it once a week for four weeks, and I figure that even if it isn't a fungal infection, it ought to be better after four more weeks!

Plus, I'm increasing my acupuncture to twice a week starting next week, so hopefully I'll start seeing more of an improvement from that too.

Wednesday, February 6, 2008

Officially Non-Compliant

After hearing from my uncle, who's a doctor, who echoed my internist's concerns that while the tinnitis might be reversible, the hearing loss caused by the Salsalate is likely not to be, I've officially gone non-compliant with my meds.

Well, officially in that I've told my internist that I've been off them for 48 hours or so now and that I'm leery of resuming them. (I went off them primarily because my prescription ran out and with this bug hitting me so hard, I wasn't making it to the pharmacist quickly enough.)

The good news is at least some of the hearing has come back. The scary part of the loss I had has reversed. It might be because my ear infection is improving (although my internist said today my left ear drum was really bulging from the extra pressure in it and my right ear still looked very red and infected -- although it doesn't hurt as much as the left one.) Or it might be from the Salsalate being stopped.

My internist and I agreed that since it was a symptomatic treatment and the only thing not taking it might cause is increased joint pain, there was really no damage caused by not taking the Salsalate right now.

I have an appointment for a hearing test with an audiologist followed by an appointment with my ENT on Feb. 20, so we'll see what he says. Until then, I'm definitely not resuming the Salsalate.

I guess the bad part is that I am afraid to call the new rheumatologist and tell him I've chosen not to take the medication. I really liked him, but I know he's really busy and I'm afraid he'll say that if I won't take his advice, I need to find a new doctor and fire me as a patient. I've heard about that happening. Not with him -- just other people with other doctors.

My internist says not to worry about it for now and to wait and see what the ENT says. If he sees that it's a problem, then she says I can go back to the rheumatologist and tell him that I was having so much hearing loss that my ENT was concerned that it was caused by the medication and might be permanent if I continued to take it. That sounds good, right? :)

Anyway, my hearing is still worse than it was before the Salsalate, but the good news is it's better than how scary it got last week. The most important thing is that I can hear Ellie most of the time and understand a good bit of what she's saying, particularly if she's actually talking to me (i.e. facing me/looking at me) rather than talking to Scott in another part of the room. (I'm gonna hate it if I permanently lose the ability to overhear other people's conversations! It's the best part of people watching. :)

Monday, February 4, 2008

More on Hearing

So I know I'm no where near being actually deaf, but it unnerves me that there's a lot I can't hear. (Can't tell yet whether the ear infection is contributing or it's all the salsalate.)

But I don't hear the phone ring anymore. Which is a partial blessing because I have very little voice and am not easy to understand right now on the phone with my laryngitis, although it is getting better.

I went into the laundry room today and hit the wrong light switch -- there's one for the fan and one for the light. The light didn't come on, but I didn't hear anything. Hit the other switch, and yup, there was the light. That one really weirded me out.

I had dozed off on the living room couch while Scott was making dinner, and apparently didn't notice/hear Ellie start crying when she somehow (and I still don't understand how) stubbed her toe so hard it was bleeding. When Scott woke me, he was right there next to Ellie, next to the couch, and I hadn't heard anything until he yelled my name. That one really weirded him out.

I don't hear anything on the monitor if I'm asleep anymore. If I'm awake, it still sounds so muffled to me that I don't understand why Scott's jumping out of bed to go respond to Ellie.

The really weirdest part is I always thought that if you couldn't hear, that it was silent in your head. But it's not silent in mine.

This morning, it took me a long time to decide that yes, that was Scott's clock radio I was hearing and that I needed to go let him and Ellie know it was time to get up. But when I was in Ellie's room, I also could have sworn there was a very faint radio playing in the background. I also get a lot of strange percussion-y sounds.

The good news is, the antibiotics are doing their job and my bronchitis is easing, my voice is still lousy but is much better than it was. My ears still hurt quite a bit, but not as frequently or as severely as they did before. My throat is still very painful but some improved. So hey, at least I finally have something I'm getting better from! :)

Sunday, February 3, 2008

Is This Tinnitis? Also re Hearing Loss in General

So one of the side effects for virtually everyone who takes Salsalate, an NSAID I'm taking huge doses of, is tinnitis and some hearing loss, all of which is reportedly reversible when you quit taking the medicine.

Combined with the loss of hearing from my very stoppered ears from a double ear infection, and there's a lot I'm not hearing. (It makes me very sad that I can barely hear Ellie so while I might catch a word here or there, I can't carry on a conversation with her right now because it's just not enough when dealing with a 3-year-old who makes digressions an art form.)

I always thought Tinnitis was a ringing in the ears. And I have had a little of that since I started the Salsalate, but not much. But it's very very noisy in my head.

When I woke from a nap on Saturday afternoon, I could have sworn I was on the El in Chicago because of the clickety-clacking sound in my head. Sometimes when I hold my ears because the pain is particularly bad, it sounds like waterfalls.

But the really weird part is that I frequently hear what sounds like a poorly tuned radio that's mostly static but with a faint strand of melody that I just can't quite make out. That can't possibly be tinnitis, can it?

It's also a little scary being home alone during the days because I keep hearing what sounds like doors closing, someone walking on the stairs (both in the house and up to the front door at different times). On Friday I think it was, I started the dishwasher and its early sounds were totally below my hearing level. When it got into a more serious gear later on, I jumped and went running to see what had happened because I'd forgotten all about it and it seemed to me to have started out of no where.

I grew up with a hard-of-hearing Mom whose hearing was ultimately bad enough that she had cochlear implants put in a few years ago. At dinner Saturday night, Scott commented on how he's noticed that (before I got laryngitis yesterday) I'm talking just a shade louder than "appropriate." It reminded him of my mother, pre-implants. I nodded, and reminded him what she always said, which was that if you can't hear yourself, you don't know if you're talking too loud so it's up to him to kindly and discreetly point it out to me if we're in public. And that I'd probably need frequent reminders.

I was talking to my sister the other day and bemoaning how difficult it was to explain it all to Ellie. And Sharon said, "Just tell her what Mom always said to us!" Which in paraphrasing was something along the lines of "Mommy's ears are broken and they don't work so well right now so you need to speak with a big voice so Mommy can hear what you're saying." (It helps to be the oldest kid -- you remember so much more because it got repeated on all the other kids! I don't remember ever hearing anything like that!!) It helped in that Ellie no longer sounds as confused why I can't hear her, but her best response was, "Do your ears need new batteries, Mommy?"

Saturday, February 2, 2008

Is This A Second Childhood, or What?

So what's the deal here?

First I test positive for parvovirus, more commonly known as Fifth Disease, which virtually all adults are assumed to have immunity from because 99 percent (Ok, I'm making that number up, but virtually everyone) gets it by the age of 6.

And, as y'all know, that seems to be directly related to my ongoing chronic illness with debilitating fatigue and joint pain.

So I mentioned a couple days ago that I had a cold and such. Well, I called my internist on Friday and talked her into talking me into not coming in for an office visit, even though my symptoms were taking a bad turn and my fever was much higher than normal. (Essentially, my norm now is running a low-grade fever. Used to be, my norm was 96.7 but since I've gotten sick, my a.m. temp is typically about 99.5 and it goes up from there.) On Friday, my 5:30 a.m. temp was 101.7. Really shoulda gone in.

Friday night was just awful, despite sleeping mostly upright because of the killer, sharp ear pain whenever I lay down. But Dr. Takano had explained to me that it was highly unusual for adults to get ear infections and went over the differences in the shapes of adult vs child eustacion (sp?) tubes.

Anyway, when my Saturday 5:30 a.m. temp was 102.6, I decided I was definitely going to see a doc. The Portland Clinic does have an urgent care but I've never been happy with my care there so I went to my favorite urgent care (which coincidentally is the same office as my husband's regular doc) and sent Scott and Ellie across the parking lot to the McDonald's that has a free playspace.

The diagnosis? Double ear infection, lyringitis, and bronchitis in its early stages. Lovely. Got myself a Z-pack and vowed that Ellie will get way more Tylenol next time she has an ear infection and we will not save it only for bedtime.

So what's the deal with my coming down with these kiddie conditions? Don't forget the Pink Eye that I'm still dealing with too!

I know people tell me I don't look my age (40, going on 41 in just over a month!), but you know, they don't bother asking for ID for me when I buy a bottle of wine so no one's mistaking me for a youngster!

Friday, February 1, 2008

Another Thursday, Another Excuse For Missing Class :(

Well, I'm fairly sure I mentioned that Ellie required a lot of extra care last week because her cold took a turn for the worse and she developed conjunctivitis. Although the ped said she did have fluid in her ear, she did not have an ear infection.

Tuesday night, Scott commented on one of my eyes looking a little funny to him, and when I woke up Wednesday, I thought both my eyes looked a little swollen and reddish although still very definitely in the early stages. So I went to my internist, who gave me a 'script for antibiotic eyedrops but told me not to use them unless my eyes got worse. She also did a throat swab to rule out strep.

Uh, yeah.

That night and early the next morning, I woke repeatedly with my eyes stuck to each other and oozing all kinds of goop. So I self diagnosed and
went to the pharmacy and picked up my eyedrops. (My doc recommends that every have their own bottle in case you accidentally touch the tip to your eye or the area around your eye that's crawling with germs.) (FWIW, Ellie and our kitty, Gracie, got the same prescription with the same strength but Ellie got a bottle with 5ml and Gracie got a much cheaper bottle of 15ml.)

I don't think my doc's office opens until 9 a.m., but I'll be calling when they do because I woke up at 5 a.m. with a 101 degree fever and now it's up to 102 despite my massive doses of NSAIDs plus some extra Tylenol thrown in for good measure and some narcotics because that's the only thing that even touches the pain. I think I have an ear infection, although it looked fine on Wednesday, but I notice sharp pain when I change positions and especially lying down is very painful. (I spent the night propped up on my sister's old college backrest. Whatever my folks spent on it, it's gotten good use for its cost because it's getting close to around 30 years old, I think.)

I do think there ought to be a rule against people with chronic illnesses also catching common acute illnesses. Hmmmph! I guess that's just the joy of having a little one in daycare!

p.s. Although the eyes are still very red, they're not as goopy as they were, so I do think the eyedrops are doing their job!!