Thursday, August 27, 2009

Patients For a Moment #6

Please check out the latest Patients For A Moment roundup of posts by, for and about patients. I didn't have a contribution for this round of the blog carnival, but I hope to for the next one.

Lots of good reading by many of my favorite bloggers, and other good reads by people I expect to be following in the future even if this was the first I'd read them.

Thanks to Kim at Emergiblog for hosting this round, and to Duncan Cross for starting PFAM and continuing to organize it.

Tuesday, August 25, 2009

Doing the Prednisone Taper

I'm tapering further off the Prednisone, which is probably a good thing since it can be awfully hard on the body, but I hadn't realized how much it was helping even when I came down to 10 mg/day and my joint pain returned.

What's the song that says, "You don't know how good you've got (it?) until it's gone?" Apparently, that should be my theme song.

So, let's see about an update...

The good news is there's a settlement in my uninsured motorist injury claim dating back from Aug. 16, 2006. The mediation was a crock -- even my lawyer, who's done hundreds of these, said the mediator wasn't even pretending to be objective and argue our case for us with the insurance company.

Steven, my lawyer, said he has found that there are two types of mediators: the ones who ask both sides what numbers they want and then tries to help them reach a compromise and the type who evaluates the claim on his own and decides how much it is worth and pushes for that number and not a penny more or less. We had the latter (chosen, of course, by the insurance company who paid the mediation fee).

In the end, we came to what's probably a reasonable settlement. Not "fair" by any means, but within the ballpark (at the bottom end, of course) of what my claim is probably worth. I could have chosen to go to binding arbitration, and Steven felt that on a really good day, I could have gotten twice what we ended up settling for. But there was also the risk of getting nothing (unlikely, but still a risk) or, on a not-so-good day, getting 25 percent less than we settled for.

It's good to have it done with. And well worth the third of the settlement my lawyer will receive that I haven't had to deal with the insurance company for the past 18 months. And even giving up his fee, I will still get slightly more than twice what the insurance company initially offered me to settle the claim and was pressuring me to accept while I was too sick with my mystery illness to deal with it.

I saw my rheumatologist last Thursday. He was pleased to hear of my improvement on 20 mg/day of Prednisone, but had had me taper to 10 mg/day a week before I saw him. He says 10 mg/day is the upper limit for a maintenance dose and wanted me to taper off completely to find out if the 10mg a day is worth the damage Prednisone can do. I'm currently on 5 mg/day for 10 days and then supposed to do 5 mg/day every other day for 10 more days before quitting entirely. If I'm significantly worse, he'll put me back on 10 mg/day as a maintenance drug.

Of course, it will be hard to tell if I'm worse because of the absence of Prednisone or from other things going on in my life, such as the 10 days break between Ellie's summer camp and her preschool starting. I typically flare when she's home for an extended time because I overdo things and don't get enough sleep and quiet time with little to no stimulation.

Interestingly, while talking to his resident, my rheumy said almost exactly what I'd said to my acupuncturist, Abby, the day before: A different, "lesser" doctor would probably already have diagnosed me with lupus and possibly already put me on a lupus treatment like methrotrexate since I can't tolerate NSAIDs or Plaquenil. But that class of drug is really quite scary and harmful to the body, so while part of me wishes I could try it just to see if it helped, the rational part of me is happy I have a conservative doctor who is cautious about prescribing it even for those patients he has diagnosed with lupus.

On Friday, I went to see a new ophthalmologist about my eye pain and wonky vision issues. Not entirely sure I liked him. He didn't see anything that should have been causing me issues, but asked if there was any chance I could have a sinus infection. I said I didn't think so, but I get them quite frequently and anything was possible even though I didn't have the usual symptoms for it.

Now I'm trying to decide if I'm simply very suggestible or if he knew what he was talking about because today I woke up major pain behind my cheek bones, and worse on my left side just like my left eye has hurt worse than my right, and that's my usual way of knowing I have a sinus infection. I also have been having more than my typical number of headaches for a few weeks now.

Prior to that appointment, I had thought the headaches were caused by my eyes being weird. After the appointment, I started pondering if the reverse were actually true and the headaches were causing the eyes to feel funny. Even the weird vision issues could be a sign of migraines, which I've had in the past.

Meanwhile, I've been taking a low dose of Florinef as prescribed by my cardiologist in an attempt to treat my dysautonomia and cut back on my dizziness and fainting. I think it might be helping some, although it's always hard to tell. I think I'm feeling less likely to faint when I've had to be on my feet, but it doesn't help my vertigo at all, which apparently means it probably comes from a different problem. And it hasn't made my dizziness and feeling faint go away completely. I revisit the cardiologist next month, and I wonder if he might try a higher dose of the Florinef since it's somewhat helpful but not entirely.

I think that's all the major stuff to update.

Oh, one good thing about tapering off the Prednisone is that hopefully I'll lose my chipmunk cheeks again. Ellie commented a few days ago that boy my cheeks had "grown" and then proceeded to poke at them and squeeze them to see what they felt like. Gotta love kids! (Or at least my kid. :-) Of course, she also doesn't think I've got fat on my tummy; instead, she says I "grew extra skin" and am "extra skinny." :-) Can I just say how nice it is to be told that I'm "extra skinny" even if I know that what she means isn't quite what the words say.

Monday, August 17, 2009

Just a Quick Update

Sorry I've been so quiet. I tapered down to 10 mg of Prednisone per day last week and have definitely felt the lowered dose. And not in a good way.

I also have something weird going on with my eyes, which I will eventually get around to seeing an eye doctor about. I also started running a fever again on Friday, which is somewhat mysterious since it hasn't turned into anything and I thought I was done running random low-grade fevers.

The excitement of my week, however, will be spending Tuesday in non-binding mediation for my uninsured motorist claim regarding my ongoing neck and back problems that stem from an August 2006 car accident. Sigh.

I also see my rheumatologist on Thursday, who I assume will be as disappointed as I am that my pain and swelling has returned with the lower dose of Prednisone. Oddly, the slight edema I've been having on the Prednisone hasn't gone away with the lowered dose like I thought it would.

Anyway, I've been trying to minimize my online time because it aggravates my eyes to look at my monitor, so if I owe you email, I hope you'll understand.

Wednesday, August 12, 2009

Patients For A Moment #5

Steve at Adventures of a Funky Heart did a great job on the latest edition of Patients For A Moment, the carnival of blog offerings written for, by and about patients.

There's a lot of good reading there by thoughtful bloggers. And yours truly apparently wasn't too whiny to be included. ;-) Please take a few minutes to check out the other offerings.

Someday I hope to get my nerve up to offer to host the carnival, but for now, I'm just thrilled to be included.

Saturday, August 8, 2009

Helpful Government Worker Is NOT (Always) an Oxymoron

I have been thinking about applying for Social Security Disability Insurance for a long time now. While I hate the idea that my mystery illness is going to go on long enough to make it worth the effort to prove I qualify for it, it's been over two years that I've been almost entirely dysfunctional due to this illness.

I started the process last February, but got overwhelmed by the application and just let it sit unfinished until this week. But the website said that if I didn't get it filed within six months of initiating the process, I could be penalized. It didn't say exactly how, but I assume by adjusting the date of my benefits if/when I qualify.

The six-month deadline was Aug. 26, so I figured I really needed to get back to it. I got the application filed on Thursday and started work on my Adult Disability & Work History Report, where I essentially had to list every doctor, hospital, medical test, job, etc. I've had.

I spent a couple hours on it Thursday, and complained on Twitter that I didn't know how anyone who was sick enough to qualify for SSDI was capable of completing the process on their own. I got a lot of agreement on that count from the chronic illness community!

I was about another hour into working on it on Friday afternoon, when my phone rang and caller ID said it was "US Govt GSA" calling. Huh?

Turns out it was someone from the local Social Security Administration office, who noted that I had filed my application but not the really long history that accompanies it. I told her I was working on it at the moment, and she suggested that I close the online file I was filling out and that she would go through it with me.

Kay spent over an hour on the phone with me, asking me questions to fill out my history, including some I hadn't even seen on the form, such as confirming that I had a minor child living with me and asking for her birth date. Turns out, if I qualify for SSDI, Ellie will also get some payment as well. (I knew that was true of children whose parent(s) died, but I didn't know it was true for children who had a parent on SSDI.)

She also modified my date of disability after learning that I had a permanent partial disability from a 1995 workers comp claim, pushing it back almost three years. She said she would have pushed it back to 1999, when I cut back to part-time due to my shoulder pain, but apparently I earned too much even working just two days a week. So she put me down for November 2004, when I left the AP.

Somehow, I had been expecting that dealing with SSA workers would be akin to dealing with the stereotypes of people who work at the IRS or the DMV. I mean, it's a huge joke to say, "I'm here from the government. I'm here to help you," isn't it?

But Kay was friendly and sympathetic and helpful. She made a difficult and challenging part of the process much easier on me, and I'm grateful for that.

I'm not naive -- it makes total sense to have "nice" people work on the customer service part of the agency, while others will get to be "mean" and reject my application. (I can't remember the statistics I've seen for Oregon, but the vast majority of applicants are turned down on their first SSDI application, but then win on appeal.) I fully expect to have to hire a lawyer to help me with my appeal, particularly since my claim is complicated by the lack of diagnosis, but that's fine.

It's nice to have this item crossed off my list of Things To Do finally, and there's a part of me that's hoping that now that I've applied for disability, that maybe my body will decide it's ready to start working properly and I'll get better. I'd be good with that. :-)

And it's also nice to know that the local SSA folks in Portland are friendly and helpful.

Friday, August 7, 2009

Feeling The Love!

I just wanted to say thank you to everyone who commented on my last blog post. I'm truly feeling the love. :-)

I'd also like to admit that while it's true that I'd still blog even if no one read my writing, I'm very grateful to have found such a supportive community of people on the Internet. I've learned so much, both from the people who read my blog and those whose blogs I also read. (Many of whom are in both categories!)

I've received wonderful support, good advice, and suggestions for things to have various doctors check out for me. (And yes, my primary care doc does appreciate those suggestions. She's as frustrated as I am at not being able to figure out what's wrong with me and help me get better.)

As many of you know firsthand, coping with a debilitating chronic illness is never easy. But being part of the blogosphere's chronic illness community is an immense help to me, and makes my life so much richer than it would be without all of you.

Thank you!

Thursday, August 6, 2009

To Whine Or Not To Whine? That Is the Question

I got an email this week that made me think that perhaps I should make clear my reasons for blogging.

I started the blog partly -- perhaps even mostly -- as a way to keep family and close friends updated about my mystery illness. Before I started the blog, I would send out mass emails updating those who wanted them on what was going on for me: symptoms, medical tests, doctor appointments, etc. Honestly? I never thought that someone I didn't know in real life would ever read my blog more than in passing.

Around the same time, I found Laurie Edward's blog, A Chronic Dose, and realized that I was far from alone; that there were other people out there dealing with chronic illnesses and finding ways to cope. That was my introduction into the chronic illness community on the blogosphere and the Internet in general. I quickly began reading other people's blogs, making connections, leaving comments, trying to both find and give support to others in similar straits.

My blog became a place for me to vent, to share my personal struggles with chronic illness with the void that is the Internet. I feel blessed by many of the people who have reached out to offer me support, and I hope the support I have tried to offer in return has given them some comfort too. I personally find comfort in knowing that I'm not the only one confused and struggling with it all, trying to adapt to new limitations from this mystery illness that shift and change like the wind. And I know I've found some amount of validation, I guess, in learning in the similar experiences others go through whether they have similar illnesses to mine or not. It helps a great deal with the sense of isolation I struggled with early in my illness. (My isolation hasn't changed much, but my acceptance and comfort level with it has. My world has shrunk, and in some ways that makes life easier because I rarely struggle anymore with trying to be my pre-illness self. I guess I'm not sure if that's acceptance or simply that I've given up. I prefer to see it as acceptance.)

My blog, more than anything else, is a place for me to express my emotions and my feelings. It has taken the place of my paper journals that I've kept on and off since I got my first diary as a ninth birthday gift from my brother and sister. Do I whine about my aches and pains here? You bet. Where else can I express how cruddy I feel, other than my blog? In "real life," I rarely burden people (other than my incredibly supportive husband) with the details of how I'm feeling. I know full well that when someone asks how I'm doing, they don't really want the answer. So depending on how much they know of my situation, I either say, "Fine, thanks! And you?" or something along the lines of "I've had better days," and then change the subject quickly.

I'm not a stoic person. What seems like a million years ago, in the mid-90s, I got sent to a pain clinic after my first shoulder surgery didn't miraculously fix an on-the-job injury. It was a workers comp claim, and the pain clinic catered to workers comp programs and insurance companies. In other words, they weren't really trying to address my problem; they just wanted to clear me to go back to work full-time so Labor & Industries could close my claim. At the end of my month at the pain clinic -- where I'm still not sure if the physical therapist was kidding or not when he said the goal of the program was to increase our pain so dramatically while we were there that we felt better when we stopped coming and therefore settled our claims faster -- I had an exit interview with the two psychologists and my then-boyfriend/now-husband was asked to be present. Turns out, the session was more for telling him how to deal with me than for me.

As I listened to them telling him not to offer me comfort when I expressed or acted like I was in pain, to withdraw and ignore me, and reward me with his attention and company only when I acted like I was pain-free, I was flabbergasted. I interrupted to tell them (and Scott) that if he followed their advice, it would likely be the end of our relationship. For me, expressing my pain somehow makes me feel better, both physically and emotionally. If I hold it all inside, I simply end up making myself sick in other ways. (FWIW, it turned out the first surgeon had somewhat botched the job. A second shoulder surgery two years later had much better results, but I still ended up being declared permanently partially disabled by the state of Washington in 1999.)

And I don't think I'm entirely alone. A British study recently showed that swearing has a pain-killing effect. I think talking about the pain one is feeling, whether physical or emotional, also helps lower pain levels. I think that's why support groups are so helpful for many people.

My blog is an outlet for me, and yes, I'm probably going to whine about the places and ways that I hurt, both physically and emotionally. And OK, going by past performance, "probably" is a blatant understatement. :-) I'm grateful for those of you who read my blog (especially those who aren't related to me! :-), and even more grateful for those of you who take the time to comment, either on the blog or via email. I've learned a lot from folks who have commented over the past couple years, and I don't have words for how much I appreciate the support I've received.

But you know what? I'd be writing here even if no one was reading. Because it helps me. And if reading my blog helps someone else figure out their journey through a mystery illness of their own, I'm thrilled. If it makes them feel less isolated and like they're the only one going through something like this, that's wonderful.

But it's not why I'm here. I'm selfish. I'm self-centered. My universe revolves around me and my family. (I firmly believe that's true for everyone, although I'm sure some will disagree.) And as a writerly quirk, I often need to put things in writing to work through them. I don't always know how I feel about something until I've written about it; I process things through my fingertips at a keyboard, often having no idea what I'm going to write until I see it on my monitor. (Hm, that's a telling fact about me that I'm sure some of you will tease me about.) I was like that as a reporter too; I was often surprised by how my stories turned out. The best ones, it often seemed, really did write themselves.


For those who are curious, the email that prompted this post:

"My mom passed away on July 27 and I see on that day you complain about every ache and pain. I too have those days but are a complainer and I am sure the doctors just cringe when they see you on their books. You are wasting their time with all of these expensive procedures. And we wonder why health care is so expensive. Give it a rest."

My response:

"My condolences on the loss of your mother. You must be going through a hard time right now. As for the rest, well, I consider my blog a place for me to vent. I think everyone needs an outlet for venting, and that's where I do mine since I figure no one is obligated to read it and "hear" my whining if they don't want to. I don't burden people with it in person, so the blog is where I let it out.

If you find my writing annoying, well, I recommend you stop reading it."

And apparently she took my advice because I got a notification that she unsubscribed to my blog today.


Meanwhile, many thanks to those who continue to stick with me.

Wednesday, August 5, 2009

The Blessings of Prednisone

I never thought I'd say this, but I'm so happy to be on Prednisone.

It's just a bizarre thing to be saying/writing, because my Prednisone experiences early in my mystery illness were so negative; primarily, it made me crazy and didn't seem to do anything for my symptoms.

But this time around, it's helped big time with my joint pain and hasn't seemed to affect my moods. All good news.

And I'm convinced that although I overdid things with the cousins visiting and flared up by the end of their visit, that without the Prednisone, I wouldn't have been able to do half as much as I did with them without ending up bedridden.

Are there downsides to the Prednisone? You bet. I'm covered in bruises, most of which I have no idea how I received. And I'm fairly sure that the Prednisone is irritating my notoriously sensitive stomach even though I'm careful to only take it with food.

But the improvement in my joint pain more than outweighs the downsides. For a few weeks, I was pretty darn close to pain free. I'm flared now, sure, and the joint pain has returned, but I'm convinced it would be way more intense if it weren't for the Prednisone keeping the inflammation down.

Tuesday, August 4, 2009

Where To Start?

What a week (and more) it's been.

Where to start? That always seems to be the question.

I saw my neurologist on July 27, and came home irritated and frustrated, so much so that I couldn't bear to blog about it. It was a waste of time, money (both mine and the insurance company's) and my limited energy on a day when Portland set a new record for heat in part of the record-setting 10 consecutive days over 90 degrees.

Have I mentioned that I found heat enervating even before my mystery illness hit? These days, it takes everything out of me.

Essentially, the neuro confirmed that the results of the tests she gave me over the phone (i.e. the normal EEG and close-to-normal lumbar puncture/spinal tap) and said she was "releasing" me back to my rheumatologist and internist. I was so dizzy and exhausted and in such deep brain fog from the heat that I failed to ask questions about my ongoing neuropathy, my increasingly bad shakiness (hands and sometimes whole body), and such. I was just bewildered that I came in to follow up with her and there wasn't really any follow up. Why waste my time and hers?

On the positive side, I finally discovered a way to communicate with doctors whose assistants usually screen all calls and act as middlemen: I wrote my rheumatologist a letter and faxed it over. I wanted to let him know about both my positive test for Lupus Anti-Coagulent and that Prednisone was suddenly acting beneficially for me with good results.

And it worked! I got voicemail from him a week after I faxed in the letter (he works limited hours during the summer), telling me he found it "very interesting" and wanted to talk to me about it. Of course, I failed to connect with him that day and had to wait until the following week to talk to him, but he called me back and we discussed it over the phone. He says I now have three of the minimum of four points required for a lupus diagnosis, but the fact that I haven't clearly developed lupus means I might never do so. As far as he's concerned, that's good news, although it means I might never get a diagnosis.

He was, however, concerned about the idea of leaving me on 20 mg of Prednisone on a longterm basis. He says 10 mg is maximum he's comfortable using for an extended period. He wants to see me in mid August, and he told me to cut back to 10 mg a week before my appointment with him. I'm a little disappointed at the thought tapering down or off Prednisone, because when I've tried going down to 10 mg, I've lost all benefits. But we'll see. My appointment with him is Aug. 20.

Meanwhile, we had houseguests for back-to-back weekends, which was ... challenging. Don't get me wrong -- I was delighted to have them.

The first was an old friend I've known longer than I've known my husband, and who housed me many times during my visits to San Francisco until she moved to Idaho. She and her boyfriend were probably the easiest houseguests ever; they were in town for a wedding celebration and needed no entertaining. But just being around people tends to wear me out, and they were too fun not to spend time chatting with. And of course the heat hit just before they got here ...

They left, and we had to quickly get ready for my cousin and his 14-year-old daughters to arrive. We had a lot of fun with them, but it was definitely more work. For one thing, the girls slept in Ellie's room, which meant she slept with us. And there was a reason why we stopped co-sleeping when she turned 2: The kid takes up way more space in a bed than you'd expect of someone under 4 feet tall!!

We took them to the Oregon coast on Friday -- where it was a blessedly cool 68 or so degrees -- and I thought I'd send everyone out on Saturday without me so I could rest and find some energy for the rest of the weekend. Unfortunately, our refrigerator died a day or two earlier, and although we stayed in denial as long as we could, we couldn't put off shopping for a replacement any longer. So we dragged the cousins and Ellie along as we went comparison shopping for refrigerators. Apparently, sizes and styles have changed since we bought our original fridge in 1999, and we ran into some problems finding one that we were sure would fit the space in our kitchen without ending up with a smaller fridge. (I wanted a bigger one, because we're always running out of space, especially when we have company or during summer fruit season when we go crazy on berries and other fruit.)

In many ways, it was a blessing to have the cousins along for the haul, even though I felt guilty that they were spending their vacation in appliance stores. But Ellie adored her teenage cousins, who kept her out of trouble while we examined the offerings and debated which ones suited us. After 1.5-2 hours and $1800, we'd bought a new, slightly larger (25.1 cubic feet vs 22.7 cubic feet) fridge and a new chest freezer, figuring our 15+-year-old freezer was likely the next appliance to die on us. Of course, they weren't going to be able to deliver until Tuesday, which meant we not only had to continue eating virtually every meal out in restaurants, we couldn't bring any leftovers home.

By Sunday, after having spent way too much time on my feet appliance shopping and picking up a few things at the mall while we were there (hey, the teenage cousins were delighted at the opportunity to see our malls! :-), I was done. I sent the crew off to Oaks Park to visit the roller rink (featuring a Wurlitzer organ, no less!) and enjoy some of the rides. And that was when I realized there was no way I was going to be able to entertain the cousins on my own on Monday until their 8 p.m. flight back to Denver. Sigh.

Scott, who's been under a lot of deadline pressure at work and had taken a vacation day on Friday, ended up taking off Monday too. I went along for a ride on Portland's tram (which is pretty darn cool and costs just $4 roundtrip), but by the time we had lunch after our tram ride, I was toast. Beyond toast. They had to bring me home, and the gang went off to visit OMSI and enjoy the CSI exhibit while I slept. Scott and Ellie dropped the cousins off at the airport around 6 p.m., then came home.

And it was a good thing, too, because even with the naps Sunday and Monday afternoons, I'm flared despite the best efforts of the Prednisone. My knuckles are all puffy, my chest and joint pain has returned and my vertigo is intense. I don't think I would have been in good condition to do the airport run, especially since it was at the height of rush hour traffic. While my cousin could have driven the minivan to the airport, I don't think I would have been entirely safe on the road for the trip home.

Well, that's my long story. I'm trying to catch my breath on this rollercoaster. The new fridge and freezer were delivered today and the old ones taken away for recycling through the Energy Trust of Oregon program. (We probably could have sold the chest freezer for more than the $30 we'll get from the program, but it's also nice to have one less thing to deal with.)