Saturday, December 29, 2007

Invisibility of Chronic Illnesses

"You look great!" my friend said.

I just smiled. I know I don't look great. I still have the Prednisone pie face going, I have purple circles under my eyes that I always get when I'm tired, and I've gained more weight than I'm willing to admit to.

But there's no obvious sign of my illness, and I can even fake that I have energy for at least a little while when visitors come, although I'm told my fading is pretty obvious for those who know to look for it.

But I don't look ill to someone who doesn't know me very well. And that's both a blessing and a curse.

I came across the But You Don't Look Sick website ages ago, long before I got sick, and I remember sending the link to my mother, who has myasthenia gravis and has complained about the invisibility of her illness.

And now I'm identifying with it.

Fatigue and joint pain and all my other symptoms don't show on the outside. So it's easy for people to forget that I'm sick, or to discount it.

I feel a little defensive when people tell me I look well, or like I'm feeling better. I realize that they mean well, and they're being hopeful for me. But it seems like I hear those things most when I'm feeling the worst, and I don't know how to respond. Do I start detailing the way I feel? All my symptoms? Do they even want to know?

Usully, I mentally roll my eyes and smile and let the remark go. The people closest to me ask how I'm feeling instead of jumping to conclusions based on their observations. And really, they're the only ones that matter, right?

Monday, December 24, 2007

Clinical Fatigue vs Being Tired

I have to admit I had no idea about the difference between clinical fatigue and normal (even extreme) tiredness before getting sick last summer.

Hey, I had a baby. I had those early months of never getting more than a few hours sleep at a time. I walked around in a fog like every new mom does. And truthfully, I couldn't imagine that there was something that people could have that involved being even more tired than I was then.

Now I know.

But I have trouble trying to explain it to people.

"Maybe you're sleeping too much," some people say.

"It's because you're so inactive -- you need to get some exercise and then you won't be so tired," others say.

"I'm really tired too. My kid was up all night being sick, and I didn't get any sleep at all. I know exactly how you feel."

Well, not really. (Although I have great sympathy for parents up all night with sick kids! It is exhausting, no question.)

Clinical fatigue is more of a bone-deep exhaustion that lasts for weeks, months or years. I need about 12 hours sleep a day just to function at a bare minimum. But when I wake up, I feel as tired as though I haven't slept at all for weeks or months. (I've tested it -- it is worse if I sleep less.) It's a complete lack of energy that no amount of caffeine will cure. (Although I've given up caffeine, I have tested to see if it helps. It doesn't.)

It's a feeling that I don't think you can really understand unless you've been there yourself. And I sincerely hope that my friends and family don't have to find out firsthand. (My mom, who has myasthenia gravis, already knows.)

But I'm grateful that I've found others, mostly online, who have been there/done that because it helps me feel a little less isolated, a little less alone on this illness frontier.

But I still find myself at a loss of words when I try to explain to normal, healthy people what I'm going through and why it's not just a matter of bucking up and powering through as many people have implied or out-and-out suggested.

And it's not that I'm lazy. Or simply that I'm out of shape from inactivity due to the length of my illness.

It's a symptom of the illness itself, that undefined, undiagnosed illness that I fear will be chronic and not temporary, although I haven't given up hope yet that something will happen and I'll find myself feeling better, slowly and surely.

I'm not sure if that means I'm in denial. Or if I'm just trying to hold onto the power of positive thinking.

Sunday, December 23, 2007

Looking for Alternatives

Well, I'm finally going to follow some advice and try acupuncture for my current ailments. While I don't expect to find a cure for whatever the heck it is that's making me sick, I'm hopeful that it will help some with the joint pain and maybe even the fatigue.

At this point, easing my symptoms would be a huge relief.

Since my insurance doesn't cover acupuncture, my parents have generously offered to help with the expense. They have both had very good experiences with acupuncture and are hopeful it will make the difference for me.

I've done acupuncture twice before. When I lived in Yakima, WA, I found an amazing acupuncturist who had trained in mainland China and was wonderful. While she couldn't cure my shoulder problem, which ultimately required two surgeries and left me declared by the state to be permanently partially disabled, I got a lot of pain relief from it. And it amazed me how my range of motion improved while she had the needles in. Eventually, she told me that my job was making my shoulder worse and that she couldn't do anything more for me as long as I kept that job. (And you know, she was right -- when I left the AP, my shoulder finally improved to the point where it only occasionally bothers me.)

In my first year or so in Portland, I was having some back pain and sought out another acupuncturist. At that time, my insurance had some coverage for acupuncture, but there was only one approved provider in the metro area. She was locally trained (I think at the College of Oriental Medicine), and I did not have a good experience with her. Not only did the acupuncture not help my back pain, but the experience itself was painful. When I complained about it, she insisted it was supposed to hurt with the needles in. That completely contradicted my first experience and everything I've read about it. I quit seeing her after just a handful of sessions and since my insurance wouldn't cover anyone else in town, just gave up on that route.

A friend has strongly recommended an acupuncturist that she has had wonderful results with, so I'm finally going to call Monday and see if I can make an appointment for early in the new year.

Meanwhile, I've taken several DVDs out from the library looking for an exercise program that will help or at least not aggravate my symptoms. Today I tried one called Tai Chi for Arthritis. I only made it through the 10 minutes of warmup exercises before my chest pain got too strong to continue, but I'm hopeful if I do it slowly and build up, I might be able to get a little exercise. Everything I've read says that gentle exercise is good for the type of joint pain I have, whether it's caused by arthritis, lupus, fibromyalgia or whatever.

I figure I'll try several different types of exercises aimed at people with chronic pain and see which one(s) work best for me, and then I'll buy my own copy. You just gotta love the library for the ability to try things out for free!

Saturday, December 22, 2007

Trying To Balance Being A Mom With Being Sick

Yesterday was my daughter's third birthday.

My husband took the day off work, and we kept her out of daycare, to make the day special. As usual, the bulk of the duties went to my husband. But I forced myself to "power through" my fatigue and my pain and participate.

And I think it was worth it because as Ellie was going to sleep, she told Scott about how wonderful her birthday was and how happy it made her. Those are the kinds of words that melt a parent's heart.

Scott and Ellie got up at their usual early hour, letting me get a little extra sleep. By the time I came downstairs at 9 a.m., they had already baked her birthday cake and Scott was starting to tint the frosting pink.

We'd made plans to meet some friends (my old playgroup) at an indoor playspace. Ellie was excited to go see these kids she hasn't seen much of since I got sick, but she got even more excited when she saw that I was coming along.

We made a stop at the pharmacy first, which was probably a mistake because by the time we were done there, I was overtired and achy. But I needed to refill my pain meds before things close for the holiday.

When we got to Play Boutique, Ellie had a fabulous time, both on her own and playing with some of her friends (and some kids she'd never met before). I mostly sat in the "parents' lounge" area, where they were nice enough to offer a very comfy couch and chair.

It was so great to see some of the friends that I've barely seen since I got sick in June, but it was also hard to explain that I needed to sit quietly without talking for awhile until my chest pain faded. I wanted it to be like old times, where we could just chat and keep an eye on the kids and talk about everything. But talking was painful for me, and I had that brain fog that seems to go with this lovely illness so even following conversations was hard. I seem to get sensory overload pretty easily these days too, and the music (Christmas carols, which are never my favorite music to hear) seemed so loud to me but it probably wasn't really.

Then we came home, and instead of crashing, it was time for a birthday lunch, followed by the delicious pink cake and then the opening of all the gifts relatives had sent.

I was near tears from pain and exhaustion by the time Scott sent me up to bed at 2:30 p.m. I stayed there until dinner, and then it was pretty quick time for a bath and sending Ellie off to bed.

Of course, silly me, instead of following her lead, I then spent over an hour uploading the days photos to the web so family and friends could see her birthday celebration. No one would have complained (too much :) about having to wait a day or two to see them. But I knew my family in particular was eager to see them and I hate to disappoint so I pushed through.

Now, of course, I'm paying for it. And I don't really know how long it will take for me to feel better. Heck, I'm losing track of what better is, really.

Part of me feels good that for one day, at least, I was able to put Ellie first again. She's had to deal with a lot of changes in her life since I got sick, and I'm glad we were able to give her a good birthday.

Part of me also wonders if it's worth it to her to have one good morning/afternoon, and then have a mom who can't get dressed the next day.

Thursday, December 20, 2007

Cutting Back The Prednisone

So I've cut back to 20 mg of Prednisone, and after one more day, I'll cut back to 10 mg per day.

My internist says she thinks I'm better off treating my joint pain with narcotics than trying to keep my sanity on the Prednisone rollercoaster. Plus she agrees it will be better for my marriage.

So we'll see. I definitely noticed a significant increase in joint pain again when I dropped from 60 mg to 40 mg, but my internist says she doesn't think I'll see that much more of an increase as I decrease my med level. I hope she's right.

Time will tell.

But I can already tell that I don't feel as emotional and jittery. So that's good news.


I'm currently reading a book called A Delicate Balance: Living Successfully With Chronic Illness by Susan Milstrey Wells. It's really well written, although since it was published in 1998, some parts of it are clearly out of date. (It pre-dates Google!!)

Wells focuses on the "invisible" chronic illnesses that plague so many people. I really identified with her description of the pressure to get a diagnosis so you can explain your situation to other people who seem to have a need to label you.

I really like the parts in the book that address how chronic illness affects the entire family, especially the spouse. I'm hoping Scott will make time to read at least the pertinent parts of the book.

I really identified with the part about how stages grief for a chronic illness is different than the stages for a death or terminal illness. For one thing, you don't die (for a long time) and that makes it harder to reach a stage of acceptance and stay there. And the coping skills needed are different.

I'm still reading it and trying to process it, so my thoughts aren't very coherent yet. But I do recommend it.

Wednesday, December 19, 2007

Why Aren't Handicapped Parking Spots Always the Best Place To Park?

I don't get out a lot these days, other than for doctor's appointments.

But my internist did do the paperwork for me to get a handicapped parking pass, and I occasionally make use of it for things like pharmacy runs, particularly at stores that are generous enough to provide those motorized scooters for those of us with mobility issues, or the occasional small errand.

But I'm routinely surprised that the handicapped parking places often are farther away from the door of a retail establishment than "normal" ones.

Of course, I never noticed that before I could legally park in them. In my healthy days, it often seemed like the only good spots were handicapped spots, although that was mostly because they often were empty while the close-in regular spots were full.

I know that for some folks who need those handicapped spots, the key for them is the extra room around the parking space that makes it easier for them to load and unload a wheelchair or other assistive device. For them, maybe it doesn't matter if the closest handicapped space is 8-10 slots away from the door instead of directly in front of it.

But for me, the extra steps involved to get to the door often impact whether I can actually run my errand or not. And how bad I feel afterwards.

When I visited the Comcast Cable office in Beaverton recently, I was amazed that there were literally no handicapped spots near the customer service entrance of the building. The other end of the building, where I assume employees enter, had a couple spots, but none where I needed to go.

I was just there to pick up a digital cable box, which I thought was an in-and-out errand since I'd set it all up on the telephone. But no. It was like going to the DMV and waiting a long time for my number to be called. To top everything else off, although there were chairs to wait for your number to be called, once it was your turn, you had to stand at a high counter while being served. And of course, nothing had been done over the phone like I thought, so by the time I was done, I thought I was going to pass out and had to sit down in the lobby again before I could hike out to my car. Ugh.

Meanwhile, I'm learning to be more observant in parking lots. Scott and I recently drove separately to a doctor's appointment for Ellie since he was coming from work and I was coming from home. We followed each other from the daycare center, and I of course headed for the handicapped spot in the crowded parking lot. Scott took his time, looked around a bit and found a spot just two slots down from the door. My spot, the nearest marked handicapped to the door, was at least eight slots the other direction.

I've also noticed that at Ellie's daycare center. There's five or six really good spots for loading/unloading the kids directly in front of the door. But if you park in one of their handicapped spots, you've got a much longer walk to the door.

Tuesday, December 18, 2007

Please Make the Monster Go Away

I guess I shouldn't have canceled my appointment today with my therapist just because I didn't think I felt well enough to talk for an hour.

It's ironic that Scott and I braced ourselves for all sorts of mood swings when I got pregnant, and really didn't have any issues, but now I'm on the rollercoaster from hell.

I'm really just starting to recognize the pattern. I take the Prednisone in the morning, and about 12 hours later, I'm acting like a Meth addict (ok, I'm exaggerating since I don't really know what Meth addicts act like) -- I'm jittery, I'm irritable, I cry at the drop of the hat, I feel like every nerve ending is buzzing in a really bad way. I can't concentrate. I can't focus on conversations. I get overwhelmed by noise and activity, and a 3-year-old is essentially a whirlwind of noise and activity!

Unfortunately, that timing pretty much corresponds with Scott and Ellie getting home for the day and doing our nightly routines. I wonder if it would be better to take it at night and have that kind of feeling during the morning/day while I'm alone. Might be easier on my family, at least.

If I'd had a different kind of husband, we would have had a blow-out argument tonight. I'd wanted to talk to him earlier in the evening, but after getting Ellie down for the night, he went online and did some work and email and relaxed for a bit. By the time he came back to the bedroom, I was essentially strung out. My pain levels were blowing the roof off because I was trying to wait to take them as late as I could so they'd last longer through the night and help me sleep better. And I was teetering on the edge of a precipice on the Prednisone rollercoaster when he started a detailed conversation that covered at least three diverse topics.

So I of course pulled the: "So why do you expect me to be able to talk to you on your schedule when you can't talk to me when I want to talk to you? Don't you know how bad a place I'm in right now?!"

Well, he didn't, exactly. Although there were signs. So he went off to a take a shower and I took my meds, and when he came out, I went into more detail than I ever have before about how out-of-control and irrational I feel despite being on anti-depressants and going back on twice-a-day anti-anxiety pills. (Never, ever, ever needed the latter until the mega-doses of Prednisone in the hospital.)

And I cried, and he hugged me and promised that he'd stand by me and we'd get through this together. I married a good man. I can't imagine any of my previous relationships standing up to all of this, but then there's a reason why I never married until I met Scott. And it isn't that I was never asked.

But I'm so tired of this. I'm tired of being sick. I'm tired of feeling like I have no control over my life anymore. I miss my friends, and being a full-time mom, and doing more family activities and being able to quilt.

I'm definitely calling my internist tomorrow. The problem with saying that I just want off the Prednisone asap is that ... well ... in some ways, it is helping. Much of my joint pain in my extremities is improved since the latest round of Prednisone started. Yeah, the pain in that chest joint thingie is worse, but a lot of the other joints are doing better. They're still painful, but not as excrutiating as they were. And I'm afraid they'll get worse again as I lower the Prednisone dosage.

Monday, December 17, 2007

The Monster In The Room

I've heard a lot of anecdotes about the mood swings that Prednisone can cause, but I've had occasional prescriptions for steroids for various ailments for years and years. One of the benefits of growing up with asthma, I guess, and the frequent cases of bronchitis and pneumonia that seem to come with it.

I never thought it really affected me, other than the typical puffy-ness that comes with it and the increased appetite that makes it way too easy to pack on the pounds.

I had noticed that I'd been moody this past week or two, but I had chalked it up to my pain levels. I'm a wimp, and I don't deal with out-of-control pain very well.

But last night, as I was walking from our study to the bedroom and our sweet kitty, Gracie, was underfoot and wanting attention, I caught myself grumbling, "Get. Out. Of. My. Way." And I just had this intense wave of anger/irritation and a desire to kick her out of my way.

I assure you that I have never intentionally kicked or hit or otherwise abused an animal (or a child). I will admit to accidentally stumbling over Gracie, who does have a knack for being underfoot when you're not expecting her. But never on purpose. And it's never crossed my mind to feel that way before.

I really think it's the Prednisone. Because that was just so not me, to even think of doing that much less want to.

I guess it's time to call my internist again and see if it's really a good idea for me to be on this high of a dose of Prednisone. Because I don't think anyone is going to be too happy to be living with me if I keep having this kind of irrational anger.

One bit of good news is that the increased doses of painkillers are helping control my pain. I was even able to cut back a little bit yesterday and not take as much I did on Saturday while not letting my pain get too out of control.

I do hate this pill popping though.

Kicking Around the Kicker

Oregon is apparently the only state that gives money back to taxpayers when the economists who look into their crystal balls to estimate how much will be raised in tax revenues underestimate things.

In other words, when we have a good year and the state earns more money than it expects thanks to more job creation, better salaries, etc., they don't get to keep the money. Instead of investing in a rainy day fund, or putting more money toward the services that are desperately underfunded -- like public schools, higher education, feeding the hungry, helping the homeless, funding our jails so they don't let criminals out just because they don't have enough beds -- they send the money back to the taxpayers.

The trigger is when revenues are more than 2 percent higher than the estimates the state based its budget on.

This year, a record $1.1 billion got sent back to taxpayers this month. But in addition to not using the money the way it should -- for state-funded services -- it actually cost the state more than $1 million just to do the check printing/processing and mailing of the refunds.

Lots of Oregonians think they're entitled to this money, and even passed a constitutional amendment making this something hard for the state to ever get rid of. People write into the Oregonian and other newspapers about how this is their money and they deserve to get it back. The average kicker was $600.

But it's not like the tax refunds you get when you overpay your taxes (usually from having too much money withheld from your paycheck). This is money that you were supposed to pay in taxes; it just so happens that every once in a while state economists underestimate tax revenues instead of overestimating them and legislators then having to cut programs midstream to avoid a deficit.

So there's a big push on to donate the kicker -- to public schools, to any charity. And I think that's a great idea. And I wish I could say we were going to do that too.

But we got $1200 back in our kicker, and that pays for an entire month of daycare, which we're really scrambling to figure out how we're going to fund in the new year now that we've exhausted the area of savings we've been applying toward daycare. (It was money we'd put aside in hopes of having a second child. That's no longer in the plans.)

I feel really guilty about it because I do think the money should go back to the state. But I'm sure we're not the only ones in Oregon who have urgent needs for the extra bit of cash that came in the mail in the past couple weeks.

I'm actually thinking about applying for SSDI in hopes that we'd get some help in paying for the daycare that doesn't look like it will be unneeded anytime soon. The rules I read on the Web say that you need to expect to be sick for at least 12 months to qualify, and well, depending on how you count, it's been at least six months and possibly nine months since I first got sick. And there's no end in sight.

Of course, I've also been reading in the Oregonian about how the vast majority (90 percent?) of initial applications are rejected, and about the same number of appeals. But if you can wait for the two- to three-year backlog until you get a hearing, your odds of receiving benefits are pretty good. So it's a thought. Even though it certainly wouldn't be a quick fix, and I'd probably also need to come up with money for a lawyer to help me through the process.

And of course there's the part of me that doesn't want to think I'd possibly still be sick by the time my hearing came around, so why bother starting the process?

Saturday, December 15, 2007

Same Old, Same Old

No real news from the visit to the internist yesterday.

She thinks my chest pain is caused by inflammation in the joint between the sternum and the chest wall. This, she says, is consistent with both the parvovirus theory and the connective-tissue autoimmune theory.

(She explains it by saying that the parvovirus made me sick initially but for some reason caused an autoimmune response, which is why I'm still ill. It's uncommon, but has been documented in the past. Apparently, something similar can happen with strep throat, which can morph into an autoimmune disease that causes severe joint pain. Who knew?)

She did an EKG, which was similar to my past ones except she could tell from the print out that I was shaking during it. I suspect that was mostly from my lack of sleep the night before, but I do shake more when I'm in a lot of pain for some reason. The neurologist I saw said it was most likely an essential tremor.

She also ordered a chest x-ray. Unfortunately, the radiologist was otherwise occupied, so she said it was inconclusive whether I have fluid in that joint area in my chest, which would explain why the pain is so severe.

She put me back on the higher dosage of Prednisone (60 mg/day) because in theory that will reduce the inflammation and make my chest hurt less. We'll see. She did not agree with my theory that the Prednisone was the cause of the chest pain, but she did acknowledge that my body just doesn't react well to steroids in general.

She told me that another patient of hers who has a similar chest pain gets shots of cortisone into her chest, but I said I really wasn't interested in going that route because I've had so many cortisone injections previously in other areas of my body and I've never gotten any good results from them. She had no problem with my decision there.

So, essentially, she just gave me more and stronger narcotics to hopefully get me through this. When I was home from the hospital, I was on one Percoset every 4-6 hours as needed. Unfortunately, after a couple months of that, I started having an allergic reaction and itching uncontrollably so we changed meds. Eventually, I ended up on Dilaudid, 4 mg every 4 hours as needed. The Dilaudid was helpful with most of my joint pain, but it really doesn't even begin to touch the chest pain.

So now, when the chest pain is really bad, I'm supposed to take two to three Percosets every four to six hours. The hope is that the chest pain will lessen, and I'll be able to cut back to either just a single Percoset or the Dilaudid.

And I guess now I just wait for my Jan. 8 appointment with the new rheumatologist. And hope that my blood sugar stays under reasonable control without needing medication.

I also had a bunch of blood drawn for yet more tests. I had read that the parvo titre should be taken at least twice to be able to tell if it is an active infection or not and whether or not it's getting better. She also decided to do the strep titre on me because, hey, it's one thing we haven't tested yet and it also could explain my symptoms possibly. And then the usual stuff, like SED rate, blood counts, etc., just to make sure nothing is changing in a bad way there. We expect my SED rate to be lower because it does respond to the Prednisone (although I don't understand why I don't experience less pain when the SED rate goes down ... but maybe it's less than it would be without it. I certainly don't know.

And after a week on the Prednisone, the lovely drug-induced chipmunk cheeks are definitely back. Oh, joy.

Friday, December 14, 2007

Is It The Prednisone??

Man, it was a rough night.

Since starting back on the Prednisone last week, I've had increasingly bad chest pain that my pain meds just don't seem to touch. It seemed like my joint pain lessened, but the chest pain that sent me to the ER back in July came back with a vengeance.

It had never entirely gone away, but it had faded to a lesser pain with occasional flares when I overdid things.

But now ... wow. I was up most of the night because it hurt so bad. Reclining is my best position -- lying down flat or sitting up make it worse, and standing/moving is worst of all.

I thought about going to the ER very seriously last night, but all the tests they've done until now showed no actual heart problem. And I didn't feel like I could drive myself or want to take a cab, and there was no way I was making Scott wake Ellie up to drive me there!

So I waited until my internist's clinic opened this morning, talked to the triage nurse who over-reacted and wanted me to go to the ER but finally agreed to let me talk to Dr. Takano to see what she thought.

She says the kind of intense, sharp, stabbing/knifing pain I'm having is not likely to be a heart attack but could be caused by inflammation around the heart or lungs. I'm going in this afternoon for some tests, but we'll both be surprised if they show anything. Most likely, she's just going to increase my pain meds and hope the Prednisone takes care of any inflammation causing this pain.

I don't know. I'm not convinced my body reacts properly to corticosteroids. I've had problems with them when they've been injected into various joints. Prednisone has helped me get over pneumonia/bronchitis a few times, but it hasn't done much for whatever the heck this illness is with all my going on and off of them.

It's just so unbelievably frustrating. I'm convinced that the Prednisone is causing the chest pain I'm having, but I guess I'll go see what the experts think. I'll try to update later today, but might not get to it if I'm feeling too bad.

Thursday, December 13, 2007

My First Mammogram

Well, it's a rite of passage.

I turned 40 this year, and today I had a mammogram.

Breast cancer doesn't run in my family, thank goodness, so I'm not expecting any bad news. Mostly, I figured I'd follow the standard medical advice to get a baseline done now so just in case I ever develop a potential problem, they've got something to compare it to.

It wasn't as bad as I was afraid it would be.

When the technician took me into the room, I told her I needed to explain a few things -- that I'm ill, that I don't know whether I'll be able to tolerate the procedure, that I might have to stop and rest. She was very reassuring that we could stop at any time and I could have as many and as long of breaks as I needed.

I won't say it was comfortable or pleasant, but it could have been a lot worse.

The best part of the technology aspect was that although she had to squish me manually, once the machine had the picture it needed, it automatically released me. That was especially good for the side views, which I found somewhat painful.

I did take small breaks, sitting down between each of the four photos she took as she processed them or did whatever the heck it was she was doing on the computer. That helped.

I was still worn out after the experience, but it wasn't the horrendous ordeal that last week's trip to the dentist was, and I think that's because I learned to be more exact about what my needs were.

Thanks to the anonymous commentator who suggested how I need to be proactive in handling things like my dental visit. I'm definitely taking that advice to heart!

Wednesday, December 12, 2007

The Long, Winding Road

I'm still stunned at how hard the dental visit hit me. I totally understood why my jaw hurt so much that I could barely move it to talk or eat, but why did every other joint in my body seem to join in the party?

I saw my internist on Friday and she put me back on Prednisone, which hasn't seemed to do much for me in the past but I'd never had this much joint pain going on.

I started it on Saturday morning -- 60 mg/day, a moderately high dose from what I understand although nothing like the 125mg three times a day I was getting in the hospital last July!

And I think it might actually be helping ... although it's hard to say if it's the Prednisone that's making my joint pain lessen or just that everything is calming down after being exacerbated by the dental visit.

On the other hand, the chest pain that I always think feels like heart pain but they tell me my heart is fine has gotten at least 200 percent worse. Which is actually more like how I felt last summer, when I had very little actual joint pain but really bad chest pain.

So am I getting better? Or worse? Or just trading symptoms?

Meanwhile, I had to start checking my blood sugar again because of the high dose of Prednisone, and it looks like those are out of whack again too. I'm waiting to hear from my internist whether I'm going to have to use insulin temporarily again. Last night, about 90 minutes after dinner, my blood sugar was 200. At 11 p.m., four hours after I last ate, it was still at 152. This morning, at least, at 6 a.m., it was down to 80, which I think is relatively respectable.


On Monday, my internist called to tell me that she had spoken to the new rheumatologist she wants me to see. She summarized my case for him, and he wasn't too excited about my low positive ANA, moderate positive anticardiolipins or the monoclonal proteins. Like my last rheumatologist, he was mostly fascinated with the fact that I tested postive for parvovirus (aka the mild childhood rash disease known as Fifth Disease) back in August.

He said he'd read several case reports about adults having debilitating, severe joint pain that lasts for up to a couple years. So maybe that's really what it is here. But I really don't think so. And my last rheumatologist said that even if the joint pain lingered, it should have been lessening and not getting worse. And that's really all it's done is spread to more joints and intensify the amount of pain.

This whole thing is just so incredibly frustrating. I'm tired of being sick. My family is tired of me being sick.


Weird symptom #148: On Monday night, when I was getting ready for bed, I noticed that my face was really red. It essentially looked like what I had in early July that made me wonder if I'd caught Fifth Disease from Ellie, who'd come down with it a few weeks earlier. That time, it lasted a couple days. This time, it was mostly faded by Tuesday, but I'm still kind of blotchy red. This time I followed advice from one of my net.buddies who has lupus who told me to always take a photo of any weird rashes so you can show them to the doctor the next time you go.

It's a pretty unflattering photo, but here it is:

I definitely wasn't sunburnt, didn't have a fever, didn't feel a hot flash kind of thing. My face was just bright red. And it isn't normally that blotchy red. Very, very weird, if you ask me.

Friday, December 7, 2007

Recovering Slowly From Dental Appointment

Wow, I still can't believe how hard that dental visit hit me. I'm slowly getting better from it, but I'm not yet back to where I was before the dental appt.

I never even made it out of my PJs yesterday. I was in bed until about 1:30 p.m., then dragged myself downstairs to spend a few hours in my recliner before going back to bed.

My jaw hurt so bad I could barely open my mouth. It's better today, but it still hurts badly if I open my mouth wide. I saw my internist today and she pressed on my jaw joint and I about jumped out of my chair. That was one joint that hadn't bothered me yet, and I don't know when it will go back to its previous condition, or if it will.

My chest pain was so bad I spent a lot of yesterday in tears. I thought very seriously about going to the ER, but talked myself out of it because I'm not convinced they could do anything for me other than give me some stronger painkillers and send me home.

I'm moving very slowly today. In some ways, I feel worse than I did during and immediately after my hospitalization in July, if only because I have more places that hurt than I did then.

I guess I don't know if my heart rate is as bad as it was then because the medical assistant didn't take my pulse today. But my blood pressure was high for me at 124/88. Before being sick, I was usually under 100/and somewhere in the 60s. Although my blood pressure is still low enough that it doesn't seem to spark any interest from medical people, I still don't like that it's higher than it should be. It had gotten lower again (although not as low as my pre-illness levels) lately and I don't like that it went back up again.

My internist is putting me back on Prednisone for at least a month. I'm starting at 60mg per day, and she told me to start checking my blood sugar two days after I start the meds. (I was too worn out to stop at the pharmacy, so Scott will go in the morning for me.)

The best news, I guess, is that she made an appointment for me at the rheumatologist she wants me to see. It's not until Jan. 8, but since so many doctors take time off over the holidays, I figure that's pretty good. She's trying to reach him by phone to see if he can get me in sooner, but I'm not too unhappy about having to wait until Jan. 8.

I was too out of it to ask for a copy of the results of my platelet function test. There was an irregularity that she said accounts for my bruising. But I'm still confused on how I can have an issue where I'm bleeding too much when I also test positive for anticardiolipin antibodies, which are a warning sign for blood clots. This illness is so confusing. But I've never heard of what she said was odd on that platelet test, so I need to get a copy next week so I can look it up on the Internet. I love!

Wednesday, December 5, 2007

The Dental Hygienist From Hell

I had the worst dentist visit ever in my life.

Even worse than the sadistic pediatric dentist who pulled absessed molars with no novocaine or other painkillers when I was 12 or so.

Although this time, it wasn't the dentist who was the problem for me. It was the hygienist.

I guess it started when she asked how I was doing and I said I wasn't having a very good day. I probably need to learn to just say I'm fine, but it seems so dishonest when I'm not fine and haven't been since sometime before last June. Or maybe March. I don't go into detail, but I do tell people I'm having a lousy day when I am.

She led me to the room and told me to have a seat on the chair, and then proceeded to sit in a chair to my right and about three feet behind me. I wasn't comfortable talking to someone without looking at them, and it was painful to try to turn around and make eye contact. So I asked her if it was possible that she could move where it was easier for me to see her. So she moves so she is exactly next to me, and I had to point out that that was still painful for me to turn my neck that far and could she please move to where I pointed. So she moved to somewhere between directly next to me and where it would have been comfortable for me to look at her.

Then she starts asking me if I brought my records from my previous dentist and I said that I thought her office requested them. She wanted to know if I'd signed a consent form, and I'm sure I sounded exasperated when I said that my records had been there in my file when I was there in August. Sure enough, she opens my file and there are my records.

The hygienist then asked if I'd had any medical changes since then. You know, I really didn't feel like going into a long explanation of my current medical status. So I mentioned a cancer scare and that it looked like I have an undifferentiated connective tissue autoimmune disease. She had no idea what that was, so I said it was similar to lupus and rheumatoid arthritis. I don't think she had much understanding of what that was either.

So before she takes my x-rays, I tell her I have a very strong gag reflex. Instead of doing what other hygienists have done for me, and getting the equipment set up before putting the bite wing in my mouth, she insisted on putting the bite wing in first and slowly getting things set up. So it took five tries to get the two pictures she wanted. Meanwhile, the coughing from the gagging was making my chest hurt worse.

As she starts cleaning my teeth, I tell her that it's painful to hold my jaw open and I need frequent breaks. In my mind, I thought she would give me a break after doing each quarter of my mouth. But she wanted to do all the way from side to side before giving me a break to close my mouth. And when I did get to close it, instead of giving me a minute or two, I got maybe 20 seconds. And that's estimating generously.

As I got more tired and my pain grew, I told her that I wanted to skip doing the part where they measure how much my gums have receded. "That's Dr. Chin's call," she said. Actually, I said, it isn't. It's my call. She started going on about state requirements, and I said fine, I'd sign a waiver that I had refused treatment.

"You don't understand how little time it takes to do it," she said, estimating it at 10 minutes. "No, you don't understand the level of pain and fatigue I have," I responded.

What I wanted to say, but didn't, was that it was illegal to force unwanted medical (or dental) treatment on a patient who refuses it. And if I wasn't allowed to leave when I wanted to, the criminal charge for that is kidnapping.

Yeah, I was getting a little worked up. But I didn't feel well; I was tired, she was making my pain grow exponentially, and of course I was very overdue on my pain meds because I refuse to drive after I've taken narcotics.

Finally, I told her stop before she finished scraping at my plaque, that I couldn't do anymore today, that I didn't feel well and needed to go home. By the time the dentist came in to talk to me briefly and look at my teeth, I was on the verge of tears. Of course, I've got two new cavities that will need to get filled sometime soon. Oh, joy.

(I've had lousy teeth since early childhood when my baby molars came up without enamel. My permanent teeth didn't have that problem, but they seem to have thinner than typical enamel, or so I've been told by several dentists.)

As I was leaving, the hygienist told me to come back next time when I was having a good day. "It's a little challenging to plan those in advance," I responded.

I don't know. Maybe I should have postponed the visit until I feel better, but I don't know when that's going to happen and when I go longer than six months between visits, I always end up needing work done. I actually did consider calling this morning and rescheduling, but thought I could do it because it shouldn't be that hard to lie in a dental chair.

But I was there for over an hour before I walked out. And that's all I'd expected to need since that's the typical length of the cleanings I've had done. And it was just too much for me.

Should I have called in advance and gone over some of the accommodations I might need, such as longer and more frequent breaks to rest my jaw? Is there some way I could have explained my illness to the hygienist, who didn't seem to understand that I actually was ill even though I look mostly fine to someone who doesn't know me?

It was just so frustrating. And I felt lame for crying over it, and humiliated that I cried in the office in front of the nastiest hygienist I've ever had.

And I'm sure she wrote down in my file somewhere that I am a "difficult patient."


And now my jaw and entire face hurt, and I'm even more exhausted than usual, and I didn't even get my teeth fully cleaned. And it won't surprise me if it takes me more than a day to recover from.

Sometimes Even a Small Load Seems Heavy

I don't have a lot of responsibilities around the house any more. My husband, who is a definite contender for the Best Husband In The World pageant, does all the cooking, most of the cleaning, the lion's share of childcare, all the yard work, most of the grocery shopping and takes the trash out.

My main tasks are to do Ellie's and my laundry and keep up the bookkeeper for our very detailed budget that tracks every penny in and out as well as keep the bills paid. I also scrub the toilets (Scott's most despised household chore), joint laundry like bedding and towels, and help with loading and unloading the dishwasher. I'm also the one who still takes care of choosing gifts for family members we exchange with, getting them wrapped and shipped as needed.

It's really not that much.

But somehow, our towels and bedding don't get washed as often as they ought, nor do the toilets get scrubbed as frequently as I'd prefer. My laundry is way behind. And I've got all of November's receipts sitting in a pile on my dresser (and it's a large pile).

About all I'm really keeping up with is getting the bills paid on time (I love my bank's internet billpay!) and keeping Ellie in clean clothes.

(Even there I fail in the sense that she's got a few favorite outfits that she's disappointed when they're all in the hamper and she has to choose something else. But I don't really feel all that bad about that because she has a huge wardrobe thanks to friends who give us handmedowns and it doesn't kill her to have to wear something else once in a while.)

Last Friday, I told Scott I needed help wrapping the mountain of gifts that needed wrapping. (Ellie's birthday is right around the corner in addition to Chanukah that started last night.) But I didn't nag him, and he had plenty of other things to do, so when Monday rolled around, I pushed myself to get everything wrapped and a few boxes ready to ship out.

And of course, what should have been maybe a 2-hour job at most took me literally all day. And I was so far beyond exhausted that I was cranky by the time Scott and Ellie got home.

And I still haven't touched the pile of receipts that need to be organized and entered into my Excel spreadsheet so I can be sure we're not overspending. And I've got doctor's appointments of one kind or another just about every day this week, so I don't know when I will get to them. I don't think I've been this behind in bookkeeping since my week in the hospital in July and the following few weeks.

I don't have that many responsibilities anymore so I really don't think it should be such a big deal to get the ones I do have done in a reasonable amount of time. But my energy is so limited, and my joint pain sometimes makes typing very painful. Good excuses, but they don't get the job done. I think I need to learn how to power through, although it seems like when I do do that (like on Monday), it backfires on me and makes me feel worse.

Whine, whine, whine.

I gotta find a way to manage these things because I can't dump yet more responsibilities onto Scott's plate. (Plus, I'm way better at getting bills paid on time than he is, and that's why I've taken charge of that pretty much since I moved in back in 1999.)

I probably need to apply Flylady's 15-minute methods to my chores. She advocates doing household chores (or anything, really!) in 15-minute increments, using a timer so you really stop when the 15 minutes are up. I did that last spring when I went on a decluttering binge and it was amazing how much you could do in 15 minutes if you set your mind to it and didn't let yourself get distracted.

It's a thought, at any rate. I'll let you know how it works.

Monday, December 3, 2007

Why Is It So Hard To Sleep When I'm So Darn Tired?

So how come I'm bone tired by the end of the day and barely able to keep my eyes open, but as soon as we turn out the lights it's like I'm wide awake?

And it's not that I'm napping too much, because it's actually worst on days that I get up to see Ellie and Scott off and end up staying up all day. Thank goodness I don't have too many days like that. ;)

But seriously, I can be totally worn out, eyes at half-mast, but when the lights go out, my brain starts churning. I have imaginary conversations with people I need to talk to but haven't lately. I write blog posts and emails in my head (and unfortunately forget all the details when I get to my computer the next day!).

It's kind of like I can't turn my brain off.

I have tried taking Ambien and a newer sleep drug ... Lunestra? Something like that. They don't really help much. I don't benefit from Tylenol PM because the sleep ingredient is essentially an antihistimine and I've been on constant allergy medicine since early childhood so even massive doses of those don't make me sleepy.

I cut caffeine out of my diet in 2001 when I was dealing with chronic stomach ulcers, so it's not that. (Ok, I didn't completely cut it out of my diet; I still eat chocolate occasionally when I can't resist or am PMSing, which I guess is redundant.)

A big part of the problem is my pain levels. Even a pretty good dose of narcotics just brings my pain levels down to tolerable, it doesn't make it go away completely. It's very difficult to find a comfortable position to sleep in, even though I use at least four pillows for support, and sometimes more. (And when I do find the perfect position, I inevitably need to get up to pee and lying back down exactly the same as I was before won't work again.)

If you have any good suggestions, I'd love to hear them. Either comment here on the blog, or email me, please!

Sunday, December 2, 2007

Random Things

The blogger whose writings inspired me to start this blog, Laurie at A Chronic Dose, honored me this week by tagging me for the "7 Random Things" meme. She said she chose me because she thought I'd "have really interesting entries for her list of seven things."

Hm. Well, I'll do my best here. :) When I was lying in bed last night having trouble getting to sleep, I mentally wrote this post. Of course, it's almost 24 hours later, so I've forgotten most of what I thought of.

  1. My second major in college turned out to be religion when I took all of a favorite professor's classes just for the fun of it and then realized I only needed two more classes for a double major. By junior year, I thought seriously about attending rabbinical school, and even applied senior year. The school, however, thought I needed a year out in the real world before entering rabbinical school, and by the time I finished my first year with the AP, there was no way I was going back to school for five more years.
  2. I once bought a book on how to write erotica because a friend, who was also a reporter (but not at the AP!), told me about the great money she earned doing it. I never even tried it after reading the book and, er, doing some market research.
  3. I'm somewhat notorious among people who worked for the AP in the mid-90s as the reporter who was told by an interviewee that she needed Prozac because all Jews are depressed -- "It's in the genes!" Read the sidebar I wrote on the psychologist nicknamed the Pied Piper of Prozac here. Funny how the mainbar doesn't seem to be anywhere to be found on the Web, but the sidebar continues to survive after all these years! (I didn't give him the nickname; I "borrowed" it from an NYTimes reporter.)
  4. My husband and I had a long-distance relationship (200 miles) for 4.5 years before I finally moved to Portland to be with him. It took us another two years to get around to getting married.
  5. When I met my husband, I warned him that I was just getting over a bad breakup and that he was going to be my transitional fling. I made a point of telling him that our relationship would never last and he should be careful not to get too attached. Yeah, that was nearly 13 years ago. He still reminds me of that and asks when I'm going to be out of my transition.
  6. I did my sixth-grade (and seventh-grade) career report about being a journalist. I really wanted to do it on being an author (i.e. writing books and not newspaper stories), but our assignment had very specific bits of information we had to include, and authors' careers varied so much that it was too complicated, so I went with journalist instead, which was much easier. That was the first time it occurred to me to become a journalist.
  7. I made up quotes for a story I did for a journalism class in college. The guys I was supposed to interview for it bailed out on me at the last minute, so I got info about them from a mutual friend and wrote the story anyway so I wasn't late with an assignment. It's amazing how good the quotes can be when you're making them up. Of course, that was the article that impressed the prof so much she wanted to submit it the college newspaper, and I had to fumble for excuses why I couldn't submit it there. That awkwardness made me swear off ever doing that again, and although I know reporters who have made up quotes for stories, I've never done it. (Although I have fixed grammar to clean up quotes occasionally. When I worked in West Virginia, my bureau chief said it was cruel to quote people in ways that make them look like idiots if they're not in public life, i.e. celeb, politician, etc., and don't know better.)

Ok, the next part of this challenge is that I now have to tag seven other bloggers to do the same thing. I'm new enough to this blog thing that I'm not even sure I know seven bloggers well enough to tag them! I lean toward parenting blogs, so that will be obvious here:

  • Sherril, who writes the Invisible Chronic Illness Experience. The hardest part of illnesses like mine and so many other people is that we don't look sick so people often don't realize how hard our illnesses hit us. Her blog makes me think about that aspect of my illness. She's also the one who I first saw mention NaBloPoMo, which was a positive experience for me. Mostly.
  • Karli, who blogs here, is a mom I met through a playgroup that spun out of the hospital's new mom group back in early 2005. She blogs about her everyday life and family stuff, and right now is past-due on giving birth to her second child.
  • Robert Barron writes How About Two?, the first Daddy Tell All blog I came across when I started exploring blogging this fall. He's a wonderful writer who makes me laugh every time I read his blog, except for the times he makes me cry (which was mainly the earlier posts that I dug back to find because I didn't understand why he was only writing about one child when his title suggested two). If he hasn't already packaged them up and tried to sell a book to a publisher, he should.
  • Dr. Rob writes Musings of a Distractible Mind. Since I spend so much time with doctors lately, I find it interesting to hear what a doctor has to say. Sometimes he's very humorous, sometimes very serious. Unfortunately, he seems be taking a break from posting lately but I'm hopeful he will be back to it soon. His Nov. 7 post about how to answer patients who ask how he's doing when he's having a rotten day was very thought-provoking to me. I also hate having people ask how I'm feeling lately because I'm boring everyone, even myself, when I go into any detail about how I feel. It's so much easier to say "fine" or "OK" than to give a thoughtful answer, and that's all most people want anyway. Plus, if I've managed to forget for the moment how crappy I feel, why does anyone want to remind me by making me think about it? (I know that isn't anyone's intention when they ask the question. They ask because they care about me, for the most part, or because it's part of our social programming for small talk among strangers.
  • Knudsen's News is just funny. I've only recently discovered it (thanks Dr. Rob!), but I'm enjoying it a great deal. And hey, everyone needs a smile sometimes.
  • Okay, Being Five isn't really what I think of when I think about what constitutes a blog, but it's really really funny and I hope someday the artist gets picked up for major syndication if s/he wants to be. Very fun. I even emailed my local newspaper, which has been trying out new comic strips, and told them this one was better than any of the ones it's been trying out.
  • Kristie's Now Quite What I Had Planned is another parenting/family blog I enjoy trying to keep up with. I don't even remember any more how I first landed on her blog, but she's an entertaining writer and someone I think I'd enjoy writing.

Whew! I think I actually came up with 7 blogs to tag! I wasn't sure I was going to there! And now it's their turns!

Here are the rules:

1) Link to the person that tagged you, and post the rules on your blog.

2) Share 7 random and/or weird facts about yourself.

3) Tag 7 random people at the end of your post, and include links to their blogs.

4) Let each person know that they have been tagged by leaving a comment on their blog.