Back to Life

I just saw when I posted last and thought - where the heck have I been? Oh, yes, I just got married on Friday!!!

The day was pretty gosh darned cool if you ask me. Looking out and seeing the smiles on everyone's faces, trying not to cry while Dad walked me down the aisle/gave his speech/danced with me, dancing like an idiot to hair metal - everything was so fun!

Since Friday, Matty and I spent time with family that were still in town, organized and unpacked everything (what am I going to do with all this leftover cake?! how do you dry out a bouquet?!) and have been starting to get back into our routine. The honeymoon isn't until late March, so it's nice to just relax....We are driving everyone crazy around us with our constant references to our new titles: "Hello Husband!" "Oh, hi there Wife!" - you get the picture. Bloody annoying to everyone but us.

Since we got engaged, I've asked many couples how much the relationship changed when they got married. From their answers, I came up with this idea that couples who say how much better their relationship is after marriage must not have had that great of a dating relationship. Couples who say nothing changed much seem to have had a much more solid foundation going in. I feel we belong to the latter group - how could anything change, really? However, I have noticed something very subtle. It's like things deepened just a bit - we went through not only the day, but the year or so of planning and stress - and everything feels a little bit sweeter having gone through it together. Can I get a collective "Awwwwwww"?

I have to say, it is a bit of a relief to have this behind me. Toward the end, this little shindig was consuming me beyond belief! I wasn't sleeping, I couldn't focus on anything else and I probably wasn't all that pleasant to be around - what with the constant chatter of "is this the right shade of red?" and all.

I also haven't been taking that great of care of myself - see the "not sleeping" portion in the above paragraph. For the days of rehearsal dinner and the wedding, I didn't take my Gleevec - the thought that I could be nauseous or worse was not an option for Le Big Day! The vomiting is supposed to occur during the booze-soaked reception - not during the ceremony, right? Also, I received a splint from my physical therapist (hereafter known as PT) and haven't been too diligent about wearing it. You see, wearing it means I can't do much else since it bends my right hand into a fist - which is not conducive to driving, making decorations or slamming the phone down when the floral shop puts you through to voice mail for the umpteenth time. So, I don't have any excuses now - time to get serious!

Hands Across Torrance

Another visit to UCLA this week - the usual vital check and howdy-do with Dr. K as part of the clinical trial. I was complaining about the intermittent nausea on the Gleevec, and the doctor asked me if I took it during the day or before bedtime. Have you ever had that moment, when you're answering a question, when you know you're a total idiot? As I'm saying. "Why, I take it during the day..." I think - um, wouldn't taking it at night be better? Duh! (Doi? Der?) To confirm my duh-ness, Dr. Khanna suggests I take the meds at night. Why not be nauseous when I'm sleeping, right? So the dose goes to 300 mg and I'm hoping for the best.

I decided to be a Good Patient and actually made a list of questions to ask (instead of relying on my less than stellar memory - always fun to get in the car after a visit and go, "Oh yeah! I was going to ask about ...") for the visit. I even emailed the list to the doc the day before so he would be prepared - if I don't get some kind of Good Patient Gold Star for this...

Anyway, one of the questions was about my hands. I haven't been able to make a fist with either hand for a little while, and I recently noticed I can't really make the "ok" sign anymore. Which is kind of annoying because now I have to rely on "thumbs up" to signify anything good in a nonverbal way. Something else I noticed - the other day, I was trying to hold change and my keys and I ended up dropping change everywhere because I couldn't hold on to it. My right hand is starting to curl under slightly, and all I can think of is the patient I saw on my last visit with her hands completely curled under.

So I figure Dr. K will just hand me an arthritis squeezy ball thing and that will be that. Instead, he is pretty alarmed. He tells me that once the hands start to do this, they won't stop unless we get aggressive. He says I am to start physical therapy immediately - twice a week for three months. Which suits me just fine cause I loooove doctors' offices!

I try to find a place as close to home as possible and come across one in Torrance with a really cool, big, splashy web site. You can set appointments, print insurance forms - neat-o. After a frustrating 10-minute call with the receptionist, I'm told that they don't accept referrals from physicians who aren't in their practice! Huh? So, let me get this straight - to be seen by a doctor in the practice, I have to be referred by a doctor in the practice? Maybe you should include that valuable info nugget on your big, splashy web site!

I ask receptionist if she knows someone else - she does! I get the info and call.....awesome! The therapist herself answers and we chat for a bit (after determining that my insurance is accepted naturally). She's great - asking me how I'm doing, saying all the right things - I just bet she's a "hugger."

Anyway, so I've got that to look forward to - I wonder if manicures will now be covered by insurance?

You Only Look as Good as You....Look

Something has been on my mind for a little while. I recently was sent a scleroderma newsletter that had a link to a "Silent Illness" support group. I'm wondering 'what the heck is silent illness and what does that have to do with me?' Turns out, silent illness is any illness or disorder that is not really visible on a patient.

I bring this up because I've had the opportunity to attend a couple of weddings and see some old friends recently. Many haven't seen me since I was diagnosed. The response has been very positive - mostly along the lines of "You look great!" And, you know, they're....right. While I'm convinced that everyone who sees me sees my patchy thick skin, red spots and stiff hands, they really don't - not at first glance anyway. I should point out here that I'm a little vain. Not in the "I think I'm so hot" sense of the word - more in the "I don't want to look like an ugly troll" sense. So there is a comfort in hearing that my appearance still passes muster.

There is a flip side here, however. Because I don't really look all that sick, is there a mindset in people that maybe I am not all that sick? No one has said or done anything to make me feel that way, but I can't help but think it's human nature. When I attend social events, I'm just me laughing and enjoying present company. Who wouldn't think - "She's fine!"? Usually, what happens afterwards is that I go home and sleep for two hours. Those weddings I went to? Slept pretty much the whole next day. Now I have those pesky medicinal side effects to deal with which - as of today - includes vomiting!

The dichotomy became clear when I read an email from a scleroderma patient in another part of the country. The disease has affected her mostly in the skin - though not her organs. She tells me her skin is very dark and tight - I'm sure there's no question that she looks pretty gosh darned sick. Whereas I have significant lung and GI involvement but look pretty gosh darned OK. Weird.

I know several people with other "silent illnesses" - Crohn's Disease, diabetes, asthma, lupus, depression, fibromyalgia, even cancer to name a few - and I have to admit before I was in the same boat, I didn't really "get" the seriousness of what some of them are going through. I know, I know - I shouldn't get wrapped up in what other people might think. It just seemed like everything came together on this point at once - so instead of keeping it silent (see what I did there? silent? haaa!), I thought I'd make a little observation. Too bad this chronic disease stuff doesn't come with some kind of handbook...