No word yet

I'm on the wait to hear about my test results. *Should* be today.

Last night, I got brave and opened my test packet. One of the things (that I actually understood) was a symptom checklist they want me to keep for the month I do the test packets. I said something dignified like, "Holy crap!" when I read the checker. I have ALL OF THEM. And some of them I don't have right now, because the bad cycle seems to be chilling out.

The things I'm not having now are the things that would scare me, like rapid heartbeat and shaking hands.

It seems so obvious I have a cortisol disorder. It also seems obvious I never seem to pass those kinds of tests....

Let's see if I can get you up to speed

Ok, so I'm home and recovering from my adventure in Seattle. In the few days leading up to my test Wednesday morning, they pumped me full of steroids. Steroids and I do not mix well. I had to take them every six hours, exactly, around the clock. They also made sleeping VERY difficult and uncomfortable. So if I was asleep at all, however briefly, I had to wake up at 1:00 a.m. to take my pill, then good luck getting back to sleep. It was not fun.

So after a particularly awful night of sleep (minutes of sleep), we got up at 4:00 to head to Seattle. When I got to the infusion center and sent to my room, the nurse asked, "Do you want to keep your IV in?" I asked, "Why?" He looked at me like I was daft and said, "Because you'll be needing it for the next three days..." I said, "Uhm, no, I won't." He said, "Yes, you will. You'll get your infusions for the next three days." Meanwhile, he's fiddling with meds, packages, etc.

I started getting a bit agitated and said he'd better check the sheet because I've been told it was just a test that took an hour. "Oh, you're here for TESTING? I thought you were here for MS treatment." At this point, amped up, already exhausted, and nervous enough about my ACTUAL test, I clarified why I was there, and only half jokingly said, "I wanna leave now."

He apologized profusely, looked up the correct person and forms and showed me he'd be doing the right thing. I was not feeling all that confident and seriously wanted to bolt. But I didn't. He finally assured me he'd be doing the cortisol test and we were fine.

Then he had trouble getting my IV in. So I have lovely bruises on both arms, my battle scars. The injection did indeed make me feel a bit ill. Then he took about six gallons of blood each time for four times. Then, I left, and fled upstairs.

I met Mark and Anna at the elevators, heading up to my consultation with the ordering doctor. Turns out, I had to meet with the PA, whom I didn't "click" with. She wasn't like Dr. Evil, but in real life, she and I would not be pals. No Starbucks for us, uh-uh. No common ground, no connection of any sort. But I persevered.

I was a bit chapped I didn't get the doctor. By this point, I'd been up for over 7 hours (and it was mid-morning)--if by up you mean out of bed (awake for what felt like about 30 hours with my awful, disrupted sleep patterns), and I found her questions grating and repetitive. And I wasn't filled with hope.

She said even if I do have this illness, it's extremely rare and extremely hard to prove. It hides in tests, and sometimes takes months or years to pin down. She gave me packages of expensive and time consuming "test kits" to take home (four of them). She also said if I'm not on a bad cycle, the tests would be useless, and we'd have to wait until I have another bad cycle and take them all again. But I should take them anyway. Neat.

The thing is, I tried to get in starting months ago, when I was having a severe weight gain/other symptom cycle, but they blew me off and bumped me to now--right after I've come through the worst of it. So, it looks to me, I may have to continue on as I have for...how long? Don't know. And during an "off cycle," I still feel bad and don't lose weight. A limbo of the worst kind.

Then, she told me she'd go talk to the doctor, and they'd come back. I was feeling a bit agitated and wanted to get the heck out of there! We had hoped to go to Panera Bread before my follow up with Dr. Nice (totally different doc, but in the interest of travel convenience, set for the same day). After awhile, no doctor, so I wandered the halls until a nurse told me she (the doctor) was coming.

Now her, I liked. She seemed to hear me, unlike the PA, who seemed to be phoning it in. But, nothing new. We see what the test shows and go from there. I can only hope the test, if I indeed have this condition, showed it. The most discouraging thing all parties said is even if the test is negative, doesn't mean I don't have it. Super. Thanks.

I have a working plan, though. If the test is negative (for now), I'll likely do another hcg cycle ASAP, and hope another bad cycle doesn't attack immediately after. The previous three times I did it, the weight held. Losing most of what I gained back would make me feel better in the meantime, while we wait for the other shoe to drop. THEN, when it does, I get my hiney in there and do the tests while I'm gaining 2# a week and feeling like death would be a treat and we can get MOVING.

But, I digress. After four fun filled hours at Swedish Medical Center, we went and saw Dr. Nice. That was a bit of a letdown. He did say, when asked, my labs (though he didn't test specifically for it) did not rule out the cortisol disorder, but that wasn't what he was looking for. He said my labs are all screwed up (duh). One test shows my cells do not get oxygen. The oxygen skates along the top, but doesn't get in and do the work it needs to do.

This is very odd and hard to treat and unlikely to be treatable here, nor would my insurance cover it. So chalk it up to thing #396778 wrong with me that we can't fix. We can see it, but we can't get there from here. I nearly burst into tears. I just want something to be clear and actionable.

Things improved after this point. We went North and spent the rest of the day and overnight with our dear friends we've known since before the invention of rope. Even though Mark wasn't feeling his best due to an interminable sinus infection and I was jacked up on weird drugs and exhaustion, we had a wonderful time. Their youngest daughter is one of our daughter's favorite friends, and they had a great time together as well. This good medicine was a special treat after the fatigue, body torture, and disappointment of the Seattle trip!

The next morning, after a nice breakfast together, we headed back to the Tall and Uncut. The trip took forever as we had to go to my dad's and retrieve our retrievers. We were able to stay at my dad's for a little while, have lunch, and relax a bit. Poor Mark had to work after we got home. Ugh. Then he had to both sub, and is working at Safeway right now. He's a trooper, but it still sucks. We're desperate for him to get a full time teaching job this next year!

Again, I lost my syntax. Anyway, today I've not felt well. The prednisone is slowly abating, but I've felt bad from the biohazard they injected Wednesday morning. I'm always tired after a trip to Seattle, but I was feeling discouraged about the depth of it. School was brutal, and my body just has felt weird. Then I looked in the mirror and thought it'd break when I saw the dark bags under my eyes. Then I recalled they said it was normal to feel quite ill for days after, and that cheered me up. I'll rally.

Today was a struggle all day, but tonight things seem to be improving a bit. I am hoping for much improvement tomorrow! But mostly I'm hoping for a good answer on Tuesday and for Mark's sinus infection to go away. The thought of the best case being I do another hcg cycle followed by probably another back surgery in the summer (that would as like as not kick off another bad cycle) makes me want to hide under my bed and refuse to come out.

But even so. I love my family. I love my friends. I am a blessed person.

weird medication

Glad there's only one day left of it...

I don't know if I want to clean the garage, pass out on my face, or go pick a fight at a bar.

Friendship and disability

Yesterday, I got an email with attached picture. It's of a coffee place in town, with a couch. So? you may be asking yourself. Couches are huge for me. Couches mean the difference between me going somewhere, or not. The vast majority of my going out somewhere falls under the "not" category.

With my back problem, I can't sit upright in a chair. 20 years, four surgeries, nine million physical therapy appointments later, and I still can't. The pain is too high. So, I don't have much of a social life.

So, when somebody actually went to the effort to scout something out for me, it means a great deal. This person is in my tribe (chronic health issues), but even so...she cared. She put the effort forward. She thought about me.

I love it when people do this. I wish they did it more! My wonderful friend across the continent has wanted me to come visit for a long time. It hasn't worked out, mostly due to surgery schedules (ugh), but now I'm gearing up for it. I've been worried partly about money (living on one income doesn't leave a lot of discretionary income), but mostly about how I could do it. Plane travel is painful. Getting around is painful. And, I can't sit like a normal person. But my friend has already been thinking of this, and making plans for me and us--things I can do.

I'll be sore as heck when I get there: I'll find a massage place for you.
I'll need to go to a Target or something for a chair that leans back: I'm on it.

She's even planned daily time for me to be able to chill out and rest up, has scouted locations with couches or outdoor seating, and/or planned fun take out places for me. I didn't ask her to do it. She did it because she's put love into action.

This is pretty rare for me, and a complete blessing. Yeah, I'm a bit scared about the trip. Most of my life feels defined by what I can't do. So I think it's a good thing to spread my wings and jump--see what I can do. Maybe that's one of the blessings of real friendship--it gives you wings.

As a disabled person, and a young one, I miss out on most of the fun, easy things most moms in my age bracket take for granted. They flit here and there, go for walks, go to coffee houses (with or without couches!) all the time. They don't have to make special plans. I see it all the time. Moms drop off their kids at dance and say, "Hey, let's go get some coffee," and away they go. While I stand there alone.

I'll walk into the building with another mom and kid (incidentally at arrival time), I walk over to the elevator, and they leave me standing there and take the stairs. This happens all the time. And yes, most of them know about my health issues. And it hurts my feelings.

Is it so impossible to slow their roll? For most, it is. Even for friends. I'm a normal person. I want to do things! And I can do them, with tweaks. But most people aren't willing to make tweaks for me. I wish I knew why.

It's a gift when somebody's willing to come to my house for a visit. Some act like I live in the Yukon Territories, when it's just five miles from town. And it hurts, and it's disappointing. I pretty much feel like there's an invisible bubble up between me and most everybody else.

I want to do things, I want to go places. It's a silly, embarrassing dream of mine to have a friend offer to come pick me up (can't drive far, obviously, if sitting is a problem) and go out to lunch with me (take out, of course). Or better--take me to Target or World Market! Spend time with me. Slow your roll. Going to Target is nothing to you, but it's special to me. Where are you?

I don't often ask for these things, because I get blown off. But sometimes, I swallow my pride and ask. But if you're not listening with your heart, you won't hear me.

Day 2

Today's day 2 of the meds for my cortisol test. I'm not feeling acutely ill, like I feared, but I do feel weird. And sadly, insomnia is a side effect. Ugh. I have five more pills to take, then whatever unholy substance they'll pour into me by IV tomorrow morning. Please do send prayers and good thoughts in my direction, both for getting through this with minimal misery and for accurate test results!

Thanks...

Got my info

....about my test next week. Now I'm nervous. I'm also annoyed. I have to take meds in the few days leading up to it every six hours, exactly. As in, take at 12, 6, 12, and 6. Isn't sleep important too? They also say the meds will likely make me sick.

Awesome.

Snow day!

It's snowing buckets! It's gorgeous! Sadly, Mark has to work tonight. :( We canceled everything else, including school. We did a little bit, then called it a day. It's just too distracting and pretty. There's probably only two days of this for the year.

It's hard for me to let go of the grip. I mean, we ROCK with staying on task over the course of the year. There's a reason for that, people. But it's not everything. There are other important things. This year I'm learning to loosen up a little bit.

Something that stuck with me was something my mom said to my sister many years ago. They had planned to take their son to Disneyland. But my sister was all hopped up on one of her crusades against big business. I can't remember why, but she was pissed off at Disney and wanted to NOT go.

My mom told her (kindly), Daniel won't remember that you stood on principle. He'll remember that you were rigid and intractable and didn't take him to Disneyland.

So today, we play in the snow and bake cookies. Thanks, Mom!

I forgot to add...

One thing I'm a little sad about is just a week back at it, and I clearly feel the stardust ebbing away, both physically and emotionally/mentally. For a long time I just felt...grim. And that went away! Now I feel it pecking at the corners. And the necessitated increased activity is causing physical discomfort, which leads to feeling bad. I suppose I didn't think I was cured of chronic illness and pain during the vacation, but one can hope!

We had a kid over today who's obsessed with belting out both showtunes (and doesn't ask if anyone wants to hear them--she just lets fly!) and Italian arias. Hey, I know, could be worse, but it *was* a bit grating. :} Having playdates here drains me. I don't want it to, but it does.

But that doesn't mean I don't go all out to make it fun for Anna and guest. My mom SUCKED at me having friends over (most of the time). So I go out of my way to be the fun mom who bakes and smiles, and actually enjoys my kid's friends. But it takes it out of me.

But that doesn't mean I won't do it.

Finally!

I should have written this a week ago; it would have been better. Now the core of what I planned on talking about has fallen victim to attrition. Sorry! But, last night my friend told me just get it out there anyway. So if it sucks, it's his fault (heh). Ok, then!

Well, our vacation wasn't what we planned, but it was what we needed. We got sick, especially Anna and me. It wasn't "serious," but it was formidable. It was a nasty cold bug that kept roaming from one part to another (bad cough, I lost my voice for five days, then I had an earache, etc.). It was so bad it postponed, then canceled, our trip to Orcas. So, we spent the whole week (and change) home.

What a blessing! We weren't too sick to enjoy movies and food, and Mark had a different pre-existing virus, and was ahead of us, so the first few days when we were too sick to do much but lie on the couch, he took care of business. And we rested. And we ate. And we watched movies. And some days, even Mark didn't leave the house. We've been so busy with life (Anna's schedule, Mark's two jobs, and the holidays), we were worn out. This was a wonderful time of recharging and relaxation. And, since we were scheduled to be out of town, we didn't have anything to do! Ahhhhh. Mark and Anna went and saw Hugo at the end of the week, which was fun for them. I felt a little bad being unable to go, but I was feeling particularly bad (just when I'd think I was ok...argh!), and my back makes movie theatres problematic anyway.

So, during this time, something good happened: my health took an upswing. A lot of my weird (cortisol related?) symptoms relaxed. So, even now, I am still feeling somewhat better overall, physically and emotionally. Yay! The only thing I'm concerned about is that since I seem to have reached the end of a bad cycle, my pending test won't be accurate. Heya, if you pray, please pray for accurate test results for me, will ya? :) Thanks.

Something else. This might sound odd, but roll with me. I remember after the second hcg cycle, I had trouble stabilizing (not like this last one, of course), but it went on for awhile. Then I realized, after awhile, suddenly I felt different, a sea change, if you will. I felt (and I can't explain how) that I had stabilized. I just felt...different.

I feel that way now! And, I verified with the scale: stabilized. Damn, too bad I gained 60 pounds back (groan). But, I could have gained the rest back, so I'm not going too far down that road. I still have to eat carefully, but now it feels like there's a point again, if you follow me Mr. Frodo. So I'm back to being more judicious in my employment of simple carbs (scarbs). I'm 2.4# above Decade of X (you again!). I'm going to try and nudge my weight back down into the Decade of X. Perhaps a steak day and continued avoidance of scarbs might do it.

I fully expect this to be a temporary situation! WHEN they diagnose me and we start treatment, the weight problem should be more within my control (Don't laugh; could happen!). Then it might take care of itself. Or the hcg diet can happen again, and it would stabilize properly. Or both. I am going to talk about the diet with both Dr. Nice and Dr. Impressive in two weeks.

So, there you have it: the virus that was a blessing and the weight that stopped just in time to save me from buying more clothes. We move forward.

Cool lab test interpretation sites

I took my packet of test results and the ones that show up on the databases all point to cortisol/adrenal.

The next test in two weeks tries to suppress cortisol production for two days (with pills every six hours 'round the clock), then they do a blood test. In most cases, if you have a chronic overproduction, the pills won't do it.

Heh. They haven't met me yet.

Happy birthday, Mom

She'd have been 73 today.

Maybe it's being sick, but I feel pretty emotional about that today. I miss her and frankly, I'm mad at her for her suicide by cigarette. Many wonderful people die of lung disease who had no choice in the matter. She did.

I know smoking is a horrible addiction. I know it's hard to quit. But, when you strip down the habit and the excuses, in the end, she chose cigarettes over living a longer life, seeing her grandchildren grow up. And I feel pretty angry and bitter about that.

Heck, I was 39 when she died and I feel like she didn't get to see me grow up, either!

I just miss her, that's all.

My pterodactyl is sick (so I can't do the dishes)

Well, we got a packet of test results (with no explanations). Being a layman, they're largely indecipherable for me. But, we did look them over several times, and can comprehend the ranges they say the various and sundry numbers should fall within. Many of mine are clearly without. Sometimes radically so. Especially those in the cortisol family (which is what I've been looking into of late).

In two weeks and change, I have a cortisol challenge test (which does not sound fun), and later that day, we will meet with Dr. Nice in Bellevue to go over the packet of test results I received. In the meanwhile, I'll send the results to Dr. Impressive, who will be looking into the cortisol issues further and who has ordered the challenge test.

There's also something way off with my sodium (so much so that the only thing in the whole packet that was written in the "notes" section was "sodium test verified by repeating;" so it must be bad).

Many of the tests have very long names with lots of syllables. Even sounding them out, we can't get a good read on them, so they morphed into silliness, as in, "Wow, the pterodactyl is 900 when it should be 100."

Do the math, and you get a sick pterodactyl.

Phone message

A message from Dr. Nice's office yesterday said all my tests are back, and did I want a phone appointment or a real appointment to go over the results and begin a treatment plan? Results. Treatment plan. That sounds like something, doesn't it? Mark called and asked for some information, but the receptionist said she doesn't have that information and that they'll mail me my results. ARGH!

I want to know now! And my voice, while starting to return (thank goodness!), is not up to a phone appointment. And, I already do have an in person visit scheduled with him in a couple of weeks. What I really want to know is a) what about my cortisol levels and b) is there something in there that explains my weight issue?

I'm relieved my voice is coming back. Anna is also improving. I still don't feel that well, and am a bit cranky today. Mark had to go to Costco as our dogs are nearly out of food and we get ours at Costco. They have an excellent grain free food that's reasonably priced, so it's worth the trip.

But I'm a little sad our week of vacation is on the backside now. While being sick has sucked, it's been, in some ways, a magical week for us! I'm sure if we had the kind of virus that anchors one to the bathroom, fun would be nonexistent. But we haven't. But, as it's turned out, we've had no plans because we were supposed to be out of town. So we've spent the week having family time, cooking and eating great meals, reading and watching movies! We are veterans of me having no voice, and not having to try and deal with the outside world has made it plenty easy for me to communicate by typing. And now my voice is coming back, so that problem is gone.

But, now the world encroaches. Sigh. I wish the week didn't have to end. But in a couple of days the demands of the world will push to the fore and no help for it. The holidays, and our everyday lives (school, Anna's activities, my health, and Mark's two jobs) are very tiring. This week, with being home and my body being occupied with the virus, my back has felt the best it has in months. Now that the virus is abating, my back is hurting more again.

I did not miss that.

Dude!

Last night Anna was showing definite signs of improvement: more energy, doing more stuff, being much perkier. So today, SHE HAS A FEVER!

What the heck?!

I seem to be about a day behind her with the virus. So today I'm feeling a little perkier. In case I follow her pattern, better force myself to get a bit more done today than I feel like (Well, ok, how is that different from any day?!).

I feel bad for Anna. Tomorrow afternoon Mark was going to take her to see Hugo. Hope that can still happen, poor little mite.

By inches

A little more voice, AND a little more energy. Woot! I may live, after all. Maybe.

Hard to believe

...but this virus isn't in retreat yet. How odd. While I'm annoyed our trip to Orcas Island is indefinitely postponed, I'm relieved we already had the week off.

What Tinkerbelle taught me today

Anna, Mark, and I just watched the third (modern) Tinkerbelle movie. I have to say, those movies are good! The first one, a couple of years ago, I was skeptical, thinking, Well, this is mine. But, as I said, they're really good!

Even though Anna and I are both sick (really sick--a nasty virus), and our vacation plans have been scuttled, there's still sweetness to be found. I need to remember that in my every day, chronic pain and illness existence. The good moments are there to be had, if we just look for, and take them.

My friend, The Goddess (who lives in Olympus), recently posted how it's her goal to say yes this year--especially to those parent things that there's no real reason to say no (You with me, parents? Things like leaving couch cushions out over night {groan} and playing the 50th game of Go Fish {I'd rather get the dishes done.}.) I love that! I, too, have tried to do that, but over time, it's drifted. But my friend has motivated me to bring that back to the fore.

At times, my life tends to be, for me, about what I can't do because of my physical limitations. But, you know, there's a whole lot of important things I can do! Things more important than vacuuming, or lifting, or...sitting upright. Or, speaking, apparently.

I can show love.

Trip postponed

And more relieved, I could not be!

First post

...still sick! Ugh!

Many reasons to "ugh" over this. Firstly, I'm not at church, though it's the last service I arranged. Also, we're supposed to leave tomorrow for Orcas. Not bueno! And...no voice.

It's a fine mess we're in, Ollie.