Thursday, August 26, 2010

Change (Sort of)

My husband sent me a link to the above photo with a note "remember when our family room looked like this?"

But I couldn't get past the thought, "Wait! When is this from? When's the last time we had our so-called breakfast bar that empty?!" And after a few beats, "How old was Ellie here? She looks really young!"

Sure enough, it turned out that the date on that photo was in April 2007, which was right when we put our house on the market. (And Ellie was just over age 2, but already loving to help cook and bake.) Luckily for us, since we had no clue that the bottom was about to fall out of the housing market, we failed to get a single offer on our house, which we finally took off the market in July 2007, about a month after I first got sick. 

In an interesting coincidence to the timing of my husband sending me this photo is that one of my friends who is also a medical mystery is on the verge of moving into a new house (You know who you are -- I can't remember right now if you've blogged about this or not and don't want to out you if you haven't! Feel free to chime in on the comments!) and not really sure how she's going to manage it all -- packing, moving, unpacking -- while simultaneously working full-time despite extremely debilitating symptoms and having a first-grader. 

I also got a call this week from a Realtor who had liked our house when he visited it back in 2007 who calls me every six months or so to see if we're considering putting the house back on the market. (He doesn't have a client who wants it; he just wants to list it.) 

Each time he's called, I've told him that due to my health problems, we don't feel like we can even consider trying to get it in show condition much less pack it up and move. This time, I told him that since our prime motivation for trying to sell it was to move into a better local school district before Ellie started kindergarten, we weren't likely to look to move anytime soon since we've enrolled her in a private school and kindergarten starts in less than a week(!).

Meanwhile, I teased Scott about why the heck did he send me the link to the above photo, when there was a much cuter one of Ellie in the same batch:

He claims the first showed more of the clean, empty family room, and maybe it did. But isn't she way cuter with the big smile? :-)

Now my baby (growing out those bangs) looks more like this:

Saturday, August 21, 2010

Status Report

It's been awhile since my last status report, mostly because there's not much to report. 

When I had my post-op appointment with the surgeon, she reminded me that despite the fact that the laparoscopic openings make it look like minor surgery, it's actually major surgery. My liver, she said, has burns on the entire underside from the cauterization that need to heal, as well as various other parts that got moved or injured during the surgery. Apparently my theory that the insides heal faster than outsides was totally wrong. And, she says, it normally takes about six weeks for everything to heal.

Of course, my PCP reminded me yesterday that I'm never a "typical" patient, so it won't be surprising if it takes a little while longer for me to get back to my normal. 

In the meantime, I'm not really getting out of the house, especially not under my own steam, with the exception of just a few acupuncture appointments and doctor appointments. I'm taking more pain meds than I'd like to be (but still well within the max dosages I'm allowed), but I'm hoping that once I'm over the gallbladder surgery entirely that I'll be able to get down to lower pain med usage. 

Other than that, I'm just watching DVDs from the library and keeping an eye on our two relatively new aquaria. 

I hope all of you are doing well. Apologies to those whom I owe email or even regular mail. I'm far behind on those things these days and can't seem to get caught up. :-/

Friday, August 20, 2010

Is It Just Me? Or Are We All Hypochondriacs?

So I got an email recently from someone who (allegedly) reads this blog. That happens sometimes, and I'm always happy to hear from people and I appreciate when y'all comment or give me advice via the blog or email.

Well, except when someone tells me I'm a boring whiner. Or, in this case, implies that I and my blog's readers are hypochondriacs. 

Yep. She not only insinuated that I was a hypochondriac, but that all of you are too. Nice, huh?

Mostly, I think, she was hoping I would post a link to her article that might drive up her traffic. 

Can I just say it's not happening? You might be able to find it, if you want, by googling the title, "10 Signs You're A Hypochondriac." But I hope you won't because I'd hate for her to profit from her advertisers based on page hits.

She thought, and I quote, her article on identifying hypochondria "dovetails well with your (my) audience."

Apparently believing one has an undiagnosed illness/condition and going to doctors frequently are some of the top signs of hypochondria.


Of course, they're also signs of being someone who is sick with something that's challenging to diagnose, which happens to a lot of people from what I have gathered over the past few years. 


Thursday, August 5, 2010

A Quick Status Report

It should have been pretty obvious to me, but I discovered this week that I feel way more recovered from the surgery when I am sleeping a lot and not doing much. 

On Wednesday, I made it out of the house for the first time since the gallbladder surgery and went to my acupuncture appointment. And just getting there pretty much wore me out and kicked my pain levels up a couple notches. I also discovered that I have a pulling sensation on the surgical wounds (which look totally healed on the outside) when I do more walking than I get in the house. 

I'm not sure if that pulling sensation is simply a cue that the internal healing isn't complete yet, or if I've already developed adhesions that are going to bug me until/unless I do something about them.

I go back to see the surgeon on Tuesday, which will be exactly two weeks from my release from the hospital and 15 days post-op. I'm assuming this is all pretty normal, and actually going very well, since she told me I wouldn't feel up to things like grocery shopping for a couple weeks. (I didn't mention that grocery shopping is too much for me even before my gallbladder issues.) So I'm guessing I'm right around where I should be, especially since I have a pre-mystery-illness history of healing slower than average.

Thanks so much to everyone who has emailed or left comments on the blog for me about my gallbladder surgery and my post about traveling in search of a diagnosis. I really like hearing from people, and appreciate the time and energy you spend when you comment or email me.

Tuesday, August 3, 2010

Would You Travel For A Diagnosis? And If So, Where?

Somewhat ironically, I've been writing on this topic everywhere, it seems, but my own blog.

My friend, Q, who writes at MedicalPuzzle, recently made her first trip to Johns Hopkins in search of a diagnosis after mystifying way too many doctors. But although she hasn't received a diagnosis, she has more clues about what's going on with her body than I've figured out about mine. She's participating in a study at Hopkins for people with suspected or diagnosed Sjogren's, and has an upcoming appointment with a doc who's apparently the only doctor of both neurology and rheumatology in the country. (As someone who also has been repeatedly bounced back and forth between neurologists and rheumatologists, that sounds like the perfect doctor to see for a medical mystery!)

The idea of traveling for a diagnosis has been one I've pondered almost back to the start of my mystery illness. And the longer I've remained a mystery, the more frequently my extended family has urged me to go somewhere like the Mayo Clinic, where there are all kinds of specialists and, most importantly, they work together to figure out what's wrong with patients. 

But is a "destination" medical center really worth the money and the energy it would cost me?

I asked about this recently on MedHelp, one of my favorite forums. (Although for those going to check it out, my most positive experiences there have been in the communities for Multiple Sclerosis and Surviving Neurological Limbo Land-No Dx. I haven't found the same kind of support and response in other groups there I've visited.)

I also posted about it on WEGO Health, a really cool site for health activists. 

And on top of all of that, I even sent an email to my favorite doctor blogger, Doctor D at AskAnMD, who kindly sent me a personal reply and then also blogged about it. (And I'm so far behind on my blogging thanks to my gallbladder issues that I'm just getting around to thanking him a month after his blog post. Ack!)

Here's Scott's and my thoughts about it (although it's of course my understanding of Scott's thoughts through many, many conversations we've had): If there were some sort of guarantee that I'd come home with a diagnosis and a treatment plan that would have me feeling better and being more functional, I'd do it in a heartbeat and the money would be very well spent. 

But there's no guarantee. Of anything. And I've read posts in various places from so many people who have traveled to Mayo Clinic or other similar places at great expense, and gone home with nothing more than they came with. In way too many cases, I've heard about people getting labeled at Mayo Clinic with psychiatric issues (i.e. "It's all in her head" syndrome), something that some doctors who don't like being stumped like to toss onto patients they can't figure out. And yes, sometimes that probably is the truth. But not nearly as frequently as I hear of it happening. 

I'm already depressed after three years of debilitating illness that remains undiagnosed. The last thing I want is to be labeled as either faking or psychosomatic, labels that some people I've met online have had a hard time shaking even when their mystery illnesses have finally become undeniably specific for diagnosis. 

Meanwhile, I live in Portland, Oregon, which while not a megapolis like New York City, still has plenty of doctors of all types. If I were still living in Charleston, West Virginia, or Yakima, Washington, I would absolutely be traveling to a bigger city with more specialists. But Portland is home to a fairly reputable medical school and is known to attract doctors who like the quality of life they can have here. 

There's the financial cost to that kind of search for a diagnosis, but I also have to consider the personal cost of my limited amount of energy. I fear that by the time I manage to get myself to whatever destination medical clinic I choose, I'll be exhausted and flared beyond being able to then spend full days seeing doctors and having tests run. I know it sounds silly, but I'm not sure I'm well enough to travel to find a doctor who can diagnose me.

On the other hand, my extended family makes a good argument when they say that I owe it to Scott and Ellie to try to get diagnosed in the hopes that it leads to a treatment that makes me better. I've already been on the sidelines for Ellie's preschool years, and she doesn't have any memories of being home with me full-time before I got sick when she was 2.5 years old. 

I've learned over the past few years that it takes a surprisingly long time to diagnose many people like me, particularly those with autoimmune diseases. It seems hard to believe that I can be as sick as I am, symptom-wise, and still not have something that doctors can easily figure out and treat.

I will continue pondering this, but I'd love to hear from any of my readers about their experiences traveling for a diagnosis and/or how you made the decision to travel or not. Thanks!


Monday, August 2, 2010

Life Without A Gallbladder

Life without a gallbladder seems to be going fairly well.

I had my surgery last Monday, and it was successful even if I had to wait hours for it because my surgeon was running late from a previous procedure. (The frustrating part there was they had moved up my arrival time from 12:30 p.m. to 11 a.m., and then I didn't get taken to the operating room until after 4:30 p.m., more than two hours after my original estimated start time. They wouldn't let me drink anything -- or even have ice chips -- so by the time they took me, I was dehydrated to the point that when I tried to talk, my lips would get stuck to my teeth and gums.)

I woke up in recovery around 7 p.m., and got to say goodnight to Ellie on the telephone from recovery because it was going to take too long to get me into a room and Scott needed to take her home and get her into bed. 

The best news is the surgeon was able to do the procedure laparoscopically, so I have only four small incisions, the biggest one a little longer than an inch. No stitches even! 

Because of my anti-Phospholipid antibody issue, I was treated just before surgery and exactly 24 hours later with a blood thinner to help prevent a blood clot. My surgeon had consulted several other specialists about me and they decided that while it wasn't necessarily going to be a problem if I didn't have the blood thinner, if I did have a blood clot, it could be more of a problem for me because of my tachycardia than a more typical patient. 

Interestingly (to me, at least :-), the injections had to be given into the belly. The only other shots I've had into my belly were insulin when I was on shockingly high doses of steroids during my 2007 hospitalization and had temporary blood sugar issues. Those insulin injections were great -- no pain whatsoever. I had the idea that all/any belly shots were painless. I guess they use a bigger needle or something with the blood thinner, or maybe it was the drug itself, because these belly shots hurt. And that surprised me, although there's no question that I'd choose an ouchy shot over a high risk of a blood clot.

I got home just in time for bedtime on Tuesday after going back-and-forth with my nurses and a resident about whether I should stay in the hospital for a second night. My pain levels shot through the roof just a couple hours before I was planning to go home, and we were all a little concerned that I'd get home and end up back in the emergency room for out-of-control pain. The resident sent me home with a prescription for 10 mg of morphine for break-through pain along with oxycodone for regular pain. 

Scott made the trip out to the pharmacy to fill it for me (what's up with hospitals that don't have pharmacies open past 5 p.m. for ER and discharged in-patients?!), but thankfully I ended up not needing anything but a slightly higher-than-normal dose of oxycodone.

A week post-op, I think I'm doing fairly well. I'm still using some pain meds for surgery-related pain, but I'm taking less oxycodone than I was the week before surgery. I'm fairly happy to have weaned down as much as I have. 

But I'm still sleeping a lot more than even my "usual." And I haven't been out of the house since I got home from the hospital. (My first appointment is Wednesday for acupuncture. I'm hoping I can get myself there.) I managed my first shower post-surgery on Saturday evening, but haven't managed another one yet. 

When I saw the surgeon on Tuesday morning, she said my gallbladder was swollen, scarred and full of stones. She also said that it was clear from looking at it that it had been causing me problems for years, and that it definitely needed to come out. That was nice to hear since I'd worried a little bit that it would turn out not to be a gallbladder problem after all. 

I go see the surgeon for my post-op check up on Tuesday. I'm expecting to be told everything is healing fine, but I'm looking forward to getting a copy of the pathology report on my gallbladder.