skip to main |
skip to sidebar
I recently came across a link for a journal article written way back in 1999 that says that 60 percent of women who are infected with parvovirus develop joint pain, sometimes severe. Typically, it only lasts a few weeks.
But the article also says 20 percent of those women develop persistent or recurring problems with joint pain that lasts months or years. The emphasis, of course, is mine.
Ugh.
That doesn't sound like such a rare problem as I'd been led to believe by my doctors.
Although the medical community is historically slow to pay any attention to diseases that affect women much more severely than men, and like fibromyalgia, chronic fatigue and other invisible illnesses, men are much less likely to have these problems from parvovirus.
I'm still not entirely convinced that my problem is parvovirus. I haven't read much about the chronic killer fatigue I suffer showing up from parvo, at least not on the medical sites. The articles all focus on the joint pain.
As my rheumatologist says, all we can do is wait and see.
Wow.
Well, if you saw my last post, you know I had a really intense flare-up last weekend. Coincidentally, I had canceled my acupuncture appointment on Friday because I was exhausted from a poor night's sleep due to a sick child and because I wanted to be free for whenever we could get into the pediatrician. (Ellie is fine, btw. Just a tummy bug, which she kindly shared with me. :)
My next acupuncture appointment was Tuesday, and I wasn't optimistic that it would make a major improvement in my pain and energy levels. I've been doing acupuncture since late December, thanks to the generosity of my parents, and while I'd made small amounts of progress in becoming more functional and taking fewer pain meds, I wasn't convinced acupuncture was the source of the improvement. But I was willing to give it the benefit of the doubt and figured if nothing else, I feel better just feeling like I'm doing something since my medical doctors don't seem to be making much progress with my illness.
I did notice that after my appointment last Wednesday I was able to inhale deeply without causing pain. It only lasted a couple hours before the pain returned, but it was something that definitely was different than before my acupuncture session. And it was the first time I'd been able to do that without any pain since I got sick last June. It didn't last, but it was still nice to experience that.
Anyway, I told my acupuncturist my tale of woe from the weekend, but also mentioned what had happened last week. We did a bunch of needles, and I left the office feeling pretty much the way I felt when I went in, which was pretty lousy. At that point, I still had pain when I inhaled deeply.
About 30 minutes after the appointment ended, I again noticed I could inhale deeply without pain. Again, it only lasted a short time, this time about an hour.
Today, however, I woke up feeling ... better. Not great. Not even as good as I did a week ago before the flare up. But a definite, noticeable improvement in both my energy levels (which I would rate today as about a 3 versus the 1 I rated it on Monday) and my pain levels (which I rate at about a 7, down from an 8.5 on Monday).
I was able to cut back a little on my pain meds today, which makes me happy, and I wasn't constantly watching the clock to see when the next dose was due. (Although my pain did let me know very promptly when the next dose was due.)
So there's no way to know absolutely for sure that it's the acupuncture that made a difference. Perhaps I would have felt better today anyways. Perhaps the Plaquenil is kicking in sooner than my doctor anticipated.
And if it's just a placebo effect, I can live with that too.
Who knows?
But I do know that I'm going to try very hard not to miss another acupuncture appointment, even if I'm feeling like crap. Maybe even especially if I'm feeling like crap.
I'm sorry to say that the forward progress I was hoping that I was making seems to have evaporated.
It's not like I was feeling well exactly, but I was feeling like I had become more functional and was coping better. But it's been a rough few days.
I think my backward trend was triggered by a lack of sleep Thursday night because my daughter, Ellie, was sick. Although Scott was the one tending her and comforting her through the night, I still was sleepless as I listened over the monitor to her whimpering and fussing.
Friday I was mostly just exhausted. I've recently started logging my energy levels, pain levels and sleep so I can show my doctors how I'm doing not just on the day I have my appointment but over the time since my last appointment. On Friday, I was very tempted to rate my energy level at 0 or even a negative number, but I finally rated it as a 1 since I figure anyone with zero energy is probably dead.
It wasn't until Saturday that my pain levels spiraled out of control.
I had been working hard at lowering my pain medication dosages because I was uncomfortable with how much I was taking. I had gotten things down to a single Percoset three times a day. But Saturday I discovered that a single Percoset just didn't even touch my pain levels. By late afternoon, I relented and took two and that finally made my pain almost bearable.
And that's pretty much how it's been since then. I'm back to watching the clock for that last hour before I can take another dose of pain meds, and taking them every four hours on the dot instead of stretching it to six or even eight hours between doses.
It's the usual places that hurt -- primarily my hands, wrists and elbows. But I started having significant knee pain a few weeks ago that kicked in on stairs or if I tried to bend my knees into a squat. And now the left knee especially hurts even when walking on flat surfaces. Part of me wonders if I injured the knee somehow, and I'll ask my internist for x-rays when I see her April 2, but I suspect it's just the same old joint issue that hits my other joints.
I have acupuncture this afternoon and I'm hopeful that will help at least a little bit with the pain.
I recently was deeply flattered when I was asked to write a guest post on the site Dancing With Pain. I wrote about how living with chronic pain sometimes makes me feel like a sullen teenager again, but this time I'm full of resentment against my illness, not my parents. You can read my post here.
The website is aimed at helping people with chronic pain find release both through traditional medical avenues and via natural pain relief. It's an interesting website to explore, full of therapeutic ideas and commentary, including guest blogs like mine. If you go check out my post there, take a few minutes to explore the rest of the site.
I've been noticing that I'm waking up with vivid memories of my dreams lately and I finally realized it's probably from the Plaquenil.
Typically, I rarely remember a dream, and if I wake up with it still in my head, it fades quickly. These dreams, I wake up and want to talk about because they're so weird! The only other time I had such vivid dreams that stuck with me was when I was pregnant with Ellie, and that's definitely not the situation now!
I kind of like remembering my dreams, although I have to be careful to remember that they're not real if I wake up angry with my husband over an argument I dreamed about. :)
The good news is still no negative side effects from the Plaquenil this time around. I wonder if it helps that I'm taking it in the evening this go-around instead of in the morning. That's been known to help me with medications that cause nausea, which was one of my symptoms last time fall.
***
I'm having some second thoughts about whether I'm ready to start taking classes again.
I had a 3 p.m. meeting yesterday with one of the disability counselors. The meeting went well; I found the counselor very supportive and encouraging. And she had dealt with students with autoimmune issues before so we were able to discuss things like whether attendance at class could be an issue.
The thing is, the vast majority of the classes in the paralegal program are offered in the evening. That works out well for students who are working full-time, as many are, as well as for the working attorneys who teach the classes.
But evenings are not a prime time for me. And I'm particularly worried about trying to drive across town for a class running 6-9 p.m. I'm at my worst both for fatigue and pain in the evenings, and I have doubts about ability to cope without painkillers that late in the evening. (And I feel very strongly about not getting behind the wheel when I'm on narcotic painkillers even if I don't notice a delay in my reaction time. There have been enough studies about alcohol to show that it really does affect one's ability to drive even if one "feels" sober.)
Scott and I talked about the possibility of using public transit, but then there was an article in the newspaper a few days ago about all the shootings in that vicinity that made me uncomfortable with the idea of standing on a street corner waiting for the bus.
(For those local readers, the classes are offered at PCC's Cascade Campus in North Portland. I didn't really consider it that bad a neighborhood until I saw the graphic in the Oregonian with all the red dots showing shootings scattered around the campus. As far as I know, there haven't been any shootings on campus, but there was at least one at the high school right across Killingsworth from the campus.)
Scott also reminded me how hard a time I had with the Living Well with Chronic Illness class I took earlier this year. I barely made it to four of the six afternoon sessions, and going knocked me out for the rest of the class day plus the next day.
So I don't know what I'm going to do. I guess I'll get my ducks in a row so that I can enroll this summer, and I'll have to evaluate how I'm feeling when registration starts in May to see if I think I really can do it. I really want to, but I just don't know if I'm up to it.
I'm happy to report that I still have no side effects kicking in from the Plaquenil.
The rheumatologist told me not to expect to notice any benefit from the medicine for at least three months, but I'm just happy that my body is tolerating it this time around and hopefully we'll get to see if it helps me.
Semi-quiet week ahead -- a meeting Monday with the disability services folks at PCC, two acupuncture appointments, and that's about it. I'm really really really hoping to be able to attend Purim services on Thursday night. Ellie is so excited about the prospect of going to synagogue in one of her princess dresses and a tiara! So I'll be trying to not wear myself out so badly that I can't go.
It wasn't a particularly good weekend for me pain- and energy-wise. I had hoped to accompany Scott and Ellie to Tot Shabbat on Saturday morning, but felt like if I went there, that was going to be the end of what I could do for the weekend. Then Ellie begged me to accompany Scott and her to OMSI and I really wanted to see the dinosaur exhibit, but by the time lunch was over, my eyes were barely staying open and I knew I needed a nap. Scott was not the happiest camper to twice end up taking Ellie out on his own after I'd said I would try to go, but he's a good sport and didn't complain.
We did accomplish one major thing: about five batches of hamantaschen! Now I have to bag them up and try to get them delivered to our Jewish friends here before Purim. It's a lot of cookies! Of course, we'll be saving a few for ourselves to eat! :)
So here I am, three days into my new prescription of Plaquenil (600 mg/day) and I don't seem to be having icky side effects yet. Which is good news, since I'm pretty sure I was having nausea by the time I hit three doses of it when I tried it last fall.
That time, my internist was monitoring me on it and when I told her my symptoms after being on it for a week, she decided to take me off since I wasn't really showing any improvement and I was feeling really miserable -- severe nausea, hot and cold flashes, increased fatigue (like what I already had wasn't enough! :), and so forth.
This time, I chose to take it in the evening rather than in the morning, and while my sleep has been a bit disrupted (hard to say it's because of the medicine since we have a sick 3-year-old in the house), I haven't really been feeling the start of those side effects this time around.
And that's good news, because my rheumatologist told me it would take at least three months before we'd know whether the Plaquenil was helping or not. That seems like forever right now, but I'm sure June will be here before I know it. And it would be nice if I were feeling better before my one-year anniversary of getting sick.
So I'm hoping. And I appreciate those of you who are hoping right along with me! :)
****
Meanwhile, I had a really good conversation with the department chair of the paralegal program at Portland Community College.And I'm kind of excited about starting the program.
But I did decide that I wasn't in a good place to start classes on March 31, when the spring term starts. So I'm going to hold off and take my first class during the summer session, which starts toward the end of June.
Meanwhile, I've got a meeting set up for Monday with someone in the disability services department to discuss what kind of accommodations they can help me with, if any. I was really excited when a new friend told me her community college provides notetakers to help her through her program. I don't know if it works differently where she is than it does here, but essentially here I have to find my own notetaker and hope their notes are both legible and complete. I'm a little skeptical on how well that works, although the college does provide this carbonless copy paper so the person can give you your copy of the notes at the end of class.
I think the solution I'm going to settle for is audio taping my classes and using a laptop (ooh! an excuse to buy another computer! :) to help me take notes. The truth is, there's no way I can type non-stop for a 3-hour lecture any more than I could good notes that long these days. (I have mostly fond memories of spending 8-10 hours days taking notes in court rooms or at conferences when I was an AP reporter, but those days are long behind me thanks to this lovely illness.)
So I'm hopeful that I'll be feeling well enough by late June that I can commit to taking a single class and that the length of the class won't be quite as difficult for me as the Living Well With Chronic Illness class I took earlier this year. As I said the other day, I'm thinking positive.
The fun thing is that a former AP co-worker that I'm trying to lure away from the company has decided to enroll in the program too. But she's starting with the spring term, but we'll take the same class during the summer so I'm pretty sure she'll help me out with notes if I need them and I'll have a built-in study buddy. :)
I saw the rheumatologist today. I was a little worried about what his reaction would be when I told him I'd stopped the Salsalate without consulting him, but it was no big deal. (Just like you said, Stef! Thanks! :) He is putting me back on Plaquenil, which you might remember that I tried last fall but gave up after a week of side effects that my internist summarized as doing too good a job of fooling my body into believing it had malaria.
The rheumatologist thinks that the side effects should lessen after I've been on the drug for a while, so I'm willing to try it again. Particularly since after he saw the records from my gastroenterologist about my series of ulcers from 2000-2005, he said that he definitely wasn't willing to put me on NSAIDs since the ulcers were clearly caused by NSAID use (including the ones that are supposedly gentle on your stomach like Vioxx and Bextra). We'll see how the Plaquenil goes. I'm told it will take at least three months before we'll know for sure if it's helpful. If I don't see results within six months, he'll take me off it.The rheumatologist still leans toward thinking this is a rare case of prolonged chronic parvo but says it could also be a "mild" case of Lupus. (Man, I'm glad it's not the severe kind since this "mild" case of whatever I've got has certainly knocked me on my butt! :)
Essentially, he says there's no way to be sure which it is. "Time will tell," he says. If it's parvo, it will eventually go away. As of yet, he says there are no case studies of parvo lasting longer than 5 years. But there's also no guarantee that it'll be gone by then even if it is just parvo.
Even if/when my symptoms do disappear, we'll have to wait longer (how long? who knows!) to be able to determine for sure that it was just parvo and that I haven't simply gone into a Lupus remission. He was perplexed by my continued hearing loss and tinnitus after stopping the Salsalate. He was not terribly concerned about the ear pain I continue to have that my ENT suggested could be a connective tissue/inflammation thing. He also was not terribly interested in my complaints about my increasing knee problems. :/ (Oddly, the resident who was with him looked at my right knee and declared she didn't see any inflammation despite my repeatedly saying it was my left knee that was the main problem. :P ) Interestingly, I mentioned the nasal polyps my ENT is so interested in and that he said they had grown considerably since the first time I saw him in March 2007 (they decreased in size for awhile during my early days on Prednisone). The rheumatologist said that there was a rare combination of asthma, allergies and aspirin sensitivity that causes flare ups in nasal polyps when on drugs like Salsalate. He said it was probably good that I was off it. Lucky me, one more "rare" condition. ;) There was a name for it but I don't remember it. It will be interesting to see if the nasal polyps are smaller when I return to the ENT in June. So that's all I know. I continue to go for acupuncture twice a week, which seems to help a bit with my fatigue (i.e. exhaustion!) and I have cut back some on pain meds, at least for right now. My pain levels tend to cycle so it's hard to know if this is a "permanent" decrease in narcotic use or whether it's just temporary. But I'll take it when I can get it!
Looks like June will be a big month for me. That's when I return to the rheumatologist, get another hearing test to see if I improve after more time off the Salsalate, and the ENT will put another scope up my nose (and down my throat) to check out my polyps and ear canals.
I'm trying to think positively these days and assume that the theory that I've got this rare case of chronic parvo that mimics Lupus but will eventually, someday, go away is the right one.
And that means I need to think about the future, and assume I'll be capable of holding down a job again.
I've been thinking pretty seriously for awhile now about going back to school. One of the problems I've had is that most of the things that I think I'd really enjoy doing require more expensive schooling that would most likely require me to take out student loans. But the pay for those jobs often isn't any higher than I would earn if I went back to being a full-time reporter, which I definitely don't want to do. For instance, I'd love to be a librarian but getting an MLS would be a serious investment. For most of my youth, I wanted to go to law school, but that's really exorbitant.
I had been thinking about maybe getting an MBA. There's all these programs around that you can do it online or evenings and weekends and be done in 18-24 months. It was sounding pretty good, until I started pricing the programs and found out the less expensive programs (online) would still run $20,000 in tuition plus books and fees. Yikes! But that looked cheap when I looked at the University of Oregon one offered in Portland that costs $46,000!!!
It would be one thing if I wanted to aim for a high-powered career. But the truth is that I don't. I just want a well-paying job that I enjoy and get to use my brain for. I don't want to be expected to work more than the typical 40- to 50-hour work week.
After talking with a friend who's a tax attorney, I'm considering enrolling in a certificate program at the local community college that would train me to be a paralegal. If you do it full-time, it's a one-year commitment. I'd probably do it slower than that, though. I'm not sure of the costs yet, but it's got to be cheaper than a $20,000 MBA. :) They also offer a 2-year program to get an associate's degree, but since I already have a BA, I don't really see the point in that.
I have a meeting tomorrow with the department chair to discuss it. During a brief phone conversation, he said he thought my 15 years experience in journalism would be a great background for a paralegal, which was encouraging.
I'm not sure how quickly I'd start it. Currently, the inflammation (and pain) in my hands is too severe for me to take notes during a 3-hour class, which is how they offer the introductory class. But a new acquaintance told me I can request special assistance with a doctor's note and the college has to provide me with someone to take notes. (I guess then I just hope they're as good a note-taker as I used to be. :) So I'll be looking into that too.
From O Magazine, a quote from Henri J.M. Nouwen that resonated for me:
"When we honestly ask which persons in our lives mean the most to us, we often find that it is those who, instead of giving much advice, solutions or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not-knowing, not-curing, not-healing and face with us the reality of our powerlessness ... makes it clear that whatever happens in the external world, being present to each other is what really matters."
Today is my 41st birthday, but I'm not feeling very celebratory. The past year hasn't been a very good one in so many ways, and I don't feel very optimistic right now that this year is going to suddenly be a lot better.
Mostly, I'm just tired of being sick and feeling lousy and I want my life back. And I guess I need to find a way to live with this illness and be happy it's not worse. But I'm not there yet. And it doesn't help that as soon as I get used to one set of symptoms, they morph on me.
Guess I just have the middle-aged birthday blues.
The really frustrating part about this illness is when something new starts hurting or acting weird, I'm never sure at first whether it's a new symptom or simply unrelated.
For the past week or so, my left knee has gotten increasingly stiff and painful. It's made getting down on the floor (and back up!) really challenging because I can't kneel on it and I also can't put all my weight on it to stand up without it feeling like it's going to give out on me. I end up needing something to help pull myself up with, which ends up hurting my hands and wrists.
It's just the weirdest thing. I'd say it felt sort of like an injury, but I haven't done anything that injured it. It's not like I'm all that active these days!! (And maybe that's the problem?) I've been comparing it to my right knee, which just has the "usual" level of joint pain I've had for months now, and it doesn't look noticeably swollen or anything. It's just ... weird.
I'd probably try to go see my internist this week but she's off for the month because her son had to have surgery. And it doesn't seem urgent enough to go see a doctor I don't know at her practice. So I guess I'll wait and mention it to the rheumatologist when I see him March 11 ...
It's just so weird the way my symptoms morph sometimes. From what I've read, that's not uncommon for patients with things like lupus, fibromyalgia, chronic fatigue, etc. And even though I still don't have a definite diagnosis, I do have a lot of similarities with those kinds of illnesses. It's just so hard that just when you think you've adjusted to a set of symptoms and learned how to cope with them, they change. Not drastically, necessarily, but enough that I need to find a whole new set of coping strategies.
I got sick back in early June 2007, as many if not all of you know. It wasn't until I was hospitalized in early July for just over a week that we realized I wasn't going to be able to take care of our 3-year-old daughter, Ellie, for awhile.
At the time, we optimistically assumed that I'd be better by the end of the summer and enrolled Ellie in Kindercare planning to take her out six weeks later for our planned Labor Day weekend trip to Chicago. Then she'd start the 7.5-hour-per-week preschool I'd signed her up for and paid two months' non-refundable tuition plus registration.
Best laid plans, and all that. Here it is March, and I'm still sick and still unable to care for Ellie. Even just an hour or so while my husband does some yard work on the weekend exhausts me.
But, I thought, at least daycare expenses are a tax deduction. So I carefully printed out all my online receipts and kept them in a file until I was ready to work on our taxes.
I've used the Turbo Tax program for years, but since this was my first experience with daycare expenses, I was shocked to find out that they were only deductible if both spouses were working, full-time students or one or both was so extremely disabled that s/he could not dress, bathe or feed himself/herself.
I thought the Social Security standard for disability was tough! This is just unbelievable.
And what about families that are barely making it on two incomes when one parent gets too sick to work but the other parent's income isn't enough to cover both living expenses and daycare?! I suppose in that case, the child/ren might qualify for a Head Start program, if (and it's a huge if) there's space available since our government (state and federal) doesn't see fit to fully fund social programs like that.
But we don't qualify for that kind of aid. And I'm not looking for a handout.
But it seems to me that if full-time students with little or no earned income can get the tax deduction for daycare expenses, there should be some sort of provision for people who can get notes from their doctors to swear that they are unable to take care of their child/ren due to serious illness. I mean, gosh, if I'm sick enough to qualify for a handicapped parking pass, doesn't that suggest that I might have trouble chasing after a 3-year-old for 10 hours a day while my husband's at work?
I had a brief hope that perhaps I could use the childcare expenses as a medical deduction since I wouldn't have needed it if it weren't for my being sick. But I checked with a good friend who's a tax attorney and she said it would be a big red flag begging the IRS to audit us. And truthfully, since you have to meet the 7.5 percent of your income threshold to get a deduction, it only would have increased our refund by $600 for our $11,000 in out-of-pocket expenses (including $7,800 in childcare expenses). (Although I would have been happy for an extra $600. But it's totally not worth the stress of an audit plus whatever interest and penalties they'd charge us if we got caught.)
I plan to write to the Democratic presidential candidates as well as Oregon's U.S. senators about this crack in the system. And I strongly urge others who have chronic illnesses, or have friends or family members with chronic illnesses, to write to their senators and congressional representatives about this too. And please consider doing it whether you have children or not.
Posts
