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Wednesday, January 21, 2009
Beginnings
It snowed a little last night. Not a whole bunch but enough to whiten the ground. It's bitter cold too. The perfect day to sit inside. And sit I do. Keep it up and I'm going to wear my butt out pretty soon. Reminder to self: Get up and move. Actually I do move. A lot really. I've never been one to sit still. I always have something going and am never happy unless I'm doing. Quite the energizer bunny as Rick so kindly points out when I'm frustrated beyond belief at the shear volume of stuff I create around myself.

So now I have a diary. Cool. I've never kept a diary before. Perhaps it's fitting to start something new as I start upon a new phase in my life. What can I say? Should I say how sad I am? Nah. Let's not dwell on that right now. What about the fear? Yeah, there's a bit of that to talk about. But not now. The anger too. Everyone always asks me how come I never get angry. If they only knew. It's easy to hide feelings and paint a calm, cool, together-like face to the world. I learned that very early on. The only indication of how bad I was churning inside was my total inability to sit still. A year ago I thought I was cured. My thyroid was finally put in it's cage. It was going to be a new beginning. Wow! How quickly things can change.

Well, diary, I'm glad you're here. I've got a feeling we shall become close friends. I really need one now. My best friend is very likely going to die. I think I'll go cry for her now..........

Thursday, January 22, 2009
To Linda

There is an owl out there this morning. Every time I hear him, I think of you and your struggles. He gives me comfort though because he tells me you are still here. Hang in there and fight girl. The world needs you.

It's morning again and a thursday at that. I must get ready to go to work. I can still say that even though it's getting harder. There are so many decisions to make. Such difficult ones at that. Where do I go from here? I know where you'd go, Linda. Right back to work. Nothing gets in your way, does it? Ah, but we promised ourselves a nice romp in the park. Shouldn't we do that first? Let us cling to our hope here. There is some, you know. Let's reach for our dreams. They haven't gone anywhere. Don't you go anywhere either. Please!

Friday, January 23, 2009
Hello Diary

I've got a question for you today.

When will the haze lift? You know that one that settles in and causes everything to feel sorta surreal? Thoughts race by in such a flash that you can't seem to be able to reach out and grab any of them. But then at other times, my head feels completely empty. Everything's a distraction but not one thing grabs my interest. Automation? Yeah.

Things are piling up. I'm so far behind in everything it's like I'll never get caught up. I just don't feel like doing anything. I pick at things and then I wander off and pick at something else. No enthusiasm. So not me. The van broke down on me yesterday. So? It got me home. Barely. But hey, I only need it to get to work on Tuesday. Maybe it'll magically fix itself. I really don't care. I'd rather sit here and watch the squirrels gather nuts. Man, there are a lot of walnuts this year. I've never seen so many. I don't have any left from last year. I ate em all. I love black walnuts. Did I pick any up? Yeah, right. In your dreams. I'm beginning to realize how much this disease saps you. It not only saps your body but it saps your soul as well. The energy just ain't there.

Maybe it's the thought of it never coming back. That's one thing that scares me. What about all my plans? I've got so much that I want to do. The paint swatch is still on the living room wall. It's been sitting there since last spring. It's going to be the perfect color. Will it ever get painted? Oh, and the rocks. My passion. My walls and my rock gardens aren't finished. My incredible gardens. They call to me. I worked on em twice this last year. Both times I ended up with my nose in the dirt.

I guess I'm not ready for such a life changing event. It's like my whole world has been turned upside down. I was actually looking forward to turning 50. That's coming up soon. I know, not many people do but when people still mistake you for being in your early 30's, it can be rather fun. Even though I'm just a little thing, I'm strong and healthy as a bull. Or at least I was. Everything seems so much heavier now and 50 not so exciting.

I think an attitude readjustment session is in order. I'm alive. I need to act it.

Saturday, January 24, 2009
A different take on things

Today was kinda ruff. The edemas getting bad again. It makes my legs tingle but I actually got some stuff finished. I feel a little accomplished.

I suppose most of what I've been feeling lately is stuck. Stuck waiting. I know I can feel better than this. I know there's help for me. But what do I do? I wait. I wait for tests, I wait for results, I wait for appointments. Not that any of this stuff really takes that long, it's just the way it's done. It seems unfair. None of these people who are making me wait are sick. Why should I have to continue to feel sick just cause of their schedule? That's always irked me.

I enjoy a diary that talks back to me. :) I do appreciate the comments and the support it brings. Depression? No. I'm not depressed. I'm sad. Normal sad. This isn't the first time I've had bad news about my health and this isn't the first time I've felt like this. I'll get over it. I just need to let it out.

I guess I need to share some good things too. Sue - you know that cabin in the ozarks? I live it. Only in the hills of TN. It's the loveliest place on earth. There's a creek out front. I can hear it from where I'm sitting. There's thousands of acres of mountain woodlands surrounding the house. Critters everywhere. The waterfall? Just a little ways up the creek. It's just a hop skip and a jump up from the magic pool. The one with the rock slide and the rhododendron that blooms in June in such glory that it takes your breath away. And rock city. That's just up behind the house. Mammoth rock formations bigger than a house, secret passages and secret caves covering acres upon acres. It's mystical. It's also the place of the dryland fish. Morel mushrooms up the ying-yang in the spring. So mouthwatering. And then the pond. About an acre in size, surrounded by woods. Completely private. A perfect place to skinny dip on a hot summer day.

I live a dream. Anyone care to share a sip of moonshine?

Sunday, January 25, 2009
The Dream

Pics? Ok, can do. Just a few though. Don't want to make anyone jealous. :)

Today's a little better. I'm starting to get my head screwed on straight. This ain't the end of the world and perhaps maybe even a new beginning. I'll be able to work with my rock's again. A little extra air would come in handy. I'm not nearly as bad off as I could be and there's still a lot of stuff I can do.

Today I shall do something fun. What? I don't know. The sun's supposed to shine and although it's cold, I may wander out and survey the grounds. Maybe even go down and say hi to Lofty. He usually lives in the yard and spends his days peeking in the windows but there is green grass down in the pasture and he loves green grass. It also means I don't have to haul the hay right now. I do miss having him right here though. He's my buddy.

I'm starting to get antsy for spring. I can't wait for the first warm day. I want so much to get out and do. By then, I should be able to. I do my at home sleep study wednesday night. The respiratory therapist is coming all the way out here to bring the stuff and then will pick it up on thursday. What royal treatment! My return appt with the pulmonologist is less than two weeks away. No set time. I'm just to wander over there after I finish my PFT's. All the info should be gathered and we should be able to sit down and talk about what to do.

I'm extremely lucky. There will be no problem with insurance. I've had a chance to check and I'm covered to the hilt for anything and everything that could possibly come up for the rest of my life. This ain't going to break the budget this time. :)

I bought daddy's truck this morning. Solved the problem with the van. I can get that fixed at the mechanic's leisure and I will have reliable backup from now on. I've got a feeling I'm going to be doing a lot of running back and forth across the mountain for a while. At least it's a pretty trip.

So today is roses. It's time to stop sulking and start working on getting well.

Me, Katrine, Rick and Lofty

The view from my window

Monday, January 26, 2009
More dreaming

Ah, why not. How about a little more? I'm proud of this place. I laid every one of those rocks myself. It's a passion of mine. It's also something that takes strength which I didn't have last summer. This summer, I hope to have it back. I still have a lot to finish. I can't let this thing beat me.

Yes, we have deer. They come into the yard. We've got one that will almost come right up to you. He loves to kick the dogs asses. They're terrified of him and run and hide when they see him. He's a bold little fellow. He was just a fawn this last spring. We also have wild turkey. They've come back into the area. They're everywhere. So have the bear, although we haven't seen one yet. We have bobcats a few panthers and foxes too. All kinds of critters everywhere. Oh, and the coyote. I love to listen to them cry in the night.

Today I did some cleaning. Not a whole bunch. I find I have to keep sitting down. But I did get some done. I'm glad that Rick does a lot of it but still, I always try to do my part. The bed still isn't made. That's something that irks me. I used to always make the bed. For the last 3 mos or so, it remains unmade more and more often. Why?

Not a whole bunch interesting happened today. It was rather quiet. Linda's out of the hospital! Got home yesterday. We talked for over two hours on the phone. She starts chemo tomorrow. It's going to kick her butt. I don't know how she does it. I wanna be as strong as her.

Rick's got a cold. It's the end of the world. I guess I better go take care of him. He's moaning again. ;)

More walls

The rock garden

Wednesday, January 28, 2009
Ramblings

What gives? A couple halfway decent days and then wham. Someone grabbed hold of my heart yesterday and just wouldn't let go. I hate that!!! SOB really doesn't describe it. It's worse than that. SOB used to always mean the wonderful catching of breath I'd feel when I reached the top of the mountain on a let's see just how fast I can get to my favorite ginseng patches. SOB used to was exhilarating! Now it's just downright scary. It settles in, it makes itself at home, it stays.

Ok. Maybe I lifted a few computers. Yeah, a couple of them were heavy but they didn't used to be. I used to get the greatest pleasure out of watching a big hefty guy come in and then reaching down and whipping his computer off the bottom shelf like it was nothing and then handing it to him and watching him go oooof. I'd just smile sweetly as they'd do a double take at little ole me.

Ah CRAPPERS!

There. Now I've bitched. Rick came in last night to say goodnight and sat on the edge of the bed. He rubbed my arm. He asked if I was ok. I said I was. He knows in his heart that something is very wrong. Double CRAPPERS! Why does this have to affect him too???

But hey, I did get a lot done yesterday. Said to hell with it and worked right through it. Didn't end up on my face either. Rescue squad's right across the street so why worry? Even got a good giggle when I got all woozy one time and it dawned on me that some people pay really good money to feel like that. I wonder if anyone would like to rent my body for a little while? I'd be more than happy to get rid of it right now. I get to keep the cute little butt though. They can have the rest.

Today's an at home day. I only go in to work tuesdays and thursdays. and work at home the rest of the time. Been doing that for years now. It's what I really enjoy about owning my own business. It gives me some flexibility. I'm sorta used to not being well. I walk around with a time bomb in my throat, never quite know when it's going to take a mind to poke me. Sometimes it's just a nudge but sometimes it really winds itself up and sorta slams me. It was almost exactly a year ago that I finally got a feel of what it feels to feel normal. Twas the magic little pills that done it. It was wonderful. It radiated from deep inside all the way to the outside and everybody saw it. People's response - "What happened?" I could only laugh. If they only knew how hard and how long I'd fought for that. Thank you doc for listening only to me, your patient, and telling me straight out that I wasn't crazy. Remember, you promised to tell me if I ever was. I'm getting there. You better watch it. ;)

So today, the guy brings the stuff out for the sleep thingy. Supposed to be here at 11. I wonder if he'll be able to find the place? That's often times a problem. I like living in a place that nobody can find. Just remember, you gotta go a bit further than you think you do. We live way back yonder.

Oh man, I just looked out. Dawn is dawning. It's pink out there. An incredible sight. The yard is glowing. Everything is standing out so sharp and clear. The bridge to nowhere just shimmers in the light. Was this just for me?

Friday, January 30, 2009
Another day

Gosh, I've got a lot to do. Everywhere I look, it's something. Where do I start? The desk doesn't look too bad but that's only cause I threw everything in the file drawer which has somehow gotten to the point where not another sliver will fit in. I need to get rid of some stuff. How come I feel this urge to get my affairs in order? Clean things up and make it easier for whoever ends up going through my stuff. Does it really matter?

Well, yesterday officially sucked. Not enough sleep and a full day of work. The guy came by on wednesday, almost right on time, and dropped off the stuff for the apnea screen. Here, you strap this to your chest here, put this cannula on and stick this on your finger and secure it with a bandaid or two, turn the units on and then fall asleep. Yeah, right. Forgot to mention that the light on the chest unit sometimes fails to light and they don't know why but that's ok cause it still "usually" records. You lay there for hours wondering why you aren't lit and whether this is all for naught and whether you'll have to spend another night with this weird device strapped between your boobs and still have the results in time for your appt. Luckily he said they only needed two hours cause I ended up with maybe 2 1/2. Almost all of it during the time I should have been up getting ready to go to work.

I made it to work on time. Skipped a shower and went in grubby. That's ok cause it matched my mood. If this disease doesn't get me, these tests surely will. That reminds me. We seem to have forgotten about all my other disorders. No one thought to schedule any followup on any of those. Just a referral to the pulmonologist. I know I should call the primary's office and get all that stuff set up but I dread dealing with the nurses over there. I keep putting it off. They make me feel like a worm.

I suppose I'll just wait til next friday and see what the pulmonary doc has to say and go from there. I'm tired. Wicked tired.........

Friday, January 30, 2009
Duh!

Now that's a good one. Turn on the microwave, go sit down and forget to put the food in it. Come on now. I gotta get this head screwed on a little tighter. At least Rick laughed. He's getting used to these silly antics.

Yes, Cheryl, you're right. I must count my blessings that I could do this at home. Fingers crossed that the screen is negative so I don't have to go in for a formal study. So far, I do like this pulmonologist. She seems quite knowledgeable and accommodating. After the PFT's next Friday, between her and my primary, the workup is pretty much complete and we can get to the business of doing something about it other than just the lasix.

Now what to blame? I don't think it was me who mentioned a rheumatologist. I did see a rheumy about 25yrs ago. He was a bit perplexed because I was antibody negative to everything he could think of but came up with some type of sero-negative arthritis. Turns out to be psoriatic arthritis but the lesions didn't appear for another 10yrs. Strike one. At the time the mystery lesions appeared I was being "treated" for hyperthyroidism. One that didn't match anything anyone had ever seen before. Turns out to be a very rare genetic defect that has caused me to be hyperthyroid since birth. Proper diagnosis and treatment started a year ago. I have long term, untreated hyperthyroidism. Strike two. About 15yrs ago, it was discovered that I have latent TB. Health Dept put me on isoniazid for a couple months until my liver enzymes started climbing. Nobody noticed that I also went acidic on them. Ten years later, the primary says "what's this?" and goes back thru the years of labs to see something I had questioned on many occassions and had been told was an insignificant lab finding. I have chronic renal tubular acidosis. Strike three. I doubt anyone's ever going to figure out what really caused it or if perhaps it was just the wicked combination of all three.

While we're at it, I may as well introduce my other medical issues which I also deal with on a daily basis. I have diabetes diagnosed last fall, early onset osteoporosis diagnosed a year ago, an IgG immune deficiency diagnosed 15yrs ago, palmoplantar pustular psoriasis finally diagnosed last summer, truncal and peripheral neuropathy diagnosed fall of 2007 and long term hypercholesterolemia. I had my uterus and left ovary removed when I was 33 and they currently have me under surveillance for a slightly suspicious breast lesion. These are just the high points. Ran out of room on my medicalert a long time ago.

I'm a mess. ;)

But I do feel better tonight. I've lost 2lbs of water since yesterday morn. Been watching my salt a little more carefully and got a good, long nap this afternoon. Tonight I can breathe and the chest ain't hurting. Yipeeee!!!!

Tuesday, February 03, 2009
The Appointment

Hello Diary,

It's been a couple days. I'm still waiting but Friday's starting to get closer. I'm starting to feel antsy. I hate doctor's appts. The anticipation sucks. You wonder. Your life is on the line. Is this person going to help me or are they going to run too? It's hard being a "complicated case". No one wants to deal with you. They take one look and toss you back at the primary and wipe their hands of you. Over and over and over again.

Ok. So me and the primary get a good giggle sometimes. Sure, it's funny when you look at it, but it still hurts. The nephrologist. Now he was a classic. I nicknamed him Speedy Gonzales. I went in and he waltzed into the room with his perfect do which he kept patting into place. Can't have one hair out of place, now can you? I really wanted to reach out and muss it all up. He took a quick look at my chart and said you have renal tubular acidosis. That's when the kidneys don't filter properly. Here's a slip for labs, I'll see you in a month. But doctor, what about this edema and the pain in my side? I don't do pain, you'll have to see your primary about that. Then he's gone so I leave. Timing, under 5 minutes. $320. A month later I go back. He's not there. He's off and someone else is filling in for him. He looks at my labs and says you are dangerously acidic, see here, your bicarb is less than 10. Are you sure you're alright? This is bad. Here's a script and a lab slip. Have the labs done right before your next appt. Come back in a month. Ok. So I go back a month later. Speedy's back! He looks at the new labs. There's nothing wrong with me!!! But doc, the other doc... No, we must go by what the labs say. Next time your primary thinks a patient has rta, have him call me first so that he doesn't waste my time. You're dismissed from clinic. Gone. So tragically typical. My primary handles it now.

I've traveled far and wide for the same thing over and over again. I've become gun shy. I don't want to see another doctor. They just don't ever understand and I'm so tired of it. The applecart's so delicately balanced right now. I'm scared someone's going to tip it.

It snowed yesterday. It was pretty. Strange though cause the day before was so nice. Sunny and almost warm. I got outside and wandered around. Visited my little pond and watched the waterfall for a bit. Walked the bridge to nowhere and just plain enjoyed being out. Then I got the rake and cleaned up the hay that had accumulated around the trough and then went down. Well not all the way. I was clinging to the rake and the fence but it was goodbye air. So it was off to bed for a long nap. But not to worry, it's happened before. Before I didn't know what it was. Now I do. I almost wish I didn't.

Ah, the moods. Up and down, up and down. I think I've got a handle and then I don't. I'm still waiting for acceptance to hit. Come on. I can do it. Maybe after friday. Get the appt out of the way. See what this lady wants to do with me and go from there. Please, whatever you do, don't toss me back.

I hate appointments!!!

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