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.)


Jeanne said...


I'm sorry your neurologist appointment was a waste. I've had my share of appointments that were a waste so I can sympathize with you there.

Heat intolerance is terrible, isn't it?

I'm sorry you had to undergo all those tests only to get the "normal" announcement. I know that "normal" announcements with the absence of symptom relief generally just means even more tests.

I can also relate to the brain fog. Been there, done that. I too have neuropathy. It's a shame that your appointment wasn't productive.

That's great that faxing a letter got you connected with your doctor. Good for you!

I have been tested for lupus for many years now, starting with when I had a growth removed with "lupus-like scarring" behind it but the tests always come back negative. My doctors keep looking for it, though.

Good luck with your medication adjustment.

Glad you had some fun with your houseguests but sorry it tired you out. I am currently very drained after visiting with out-of-state relatives this past weekend.

Sorry your fridge died. Wow... our fridge was bought in 1999 too and I still think of it as new. That's kind of scary that yours died. My parents bought their fridge before I was born and it finally died a couple years back. So it had to be nearly 40 years old. They don't make appliances like they used to.

That is AWESOME that you found a way to recycle your old appliances!

Hopefully the rollercoaster will stop and let you off soon. :)

Lisa Emrich said...

I'm also sorry about the wasted appointments. Hopefully, though, this means you just might be closer to a diagnosis which will hopefully offer up treatment options.

My mother and aunt both have lupus. They each have different treatment protocols but are both doing well. If it is lupus (or closely related), then it makes complete sense that the prednisone is working well.

Keep that up, girl.

Lisa said...


I don't know how I didn't get to this post sooner.

Between your recent neuro appointment and mine, I'm convinced that it is one specialist that I don't want on my team. They just seem out of sync with those of us who don't match textbooks. What specifically were they looking for with the lumbar puncture?

I hope they can get to the bottom of the Lupus diagnosis quickly though Lupus always concerns me - so many things are concomitant with it and I don't want docs to stop there.

As always, I'm thinking of you, my CI twin! I'm here for any rants, tears, and cheers. When docs solve your mystery and you get the treatment you need, I'll be flying out to Oregon to throw a party!!

Many hugs,