December 2009 archive

I Heard the Bells…

Happy Christmas everyone!!

Christmas was nice, the quiet kind, but in a way that was rather comforting. We didn’t do anything special, but of course the dinner was magnificent! All of my favourites (stuffing or dressing, depending where you live ;P) and of course homemade cranberry sauce!!

I felt just awful during the day. It seems that whenever the chance arrives that there could be a good day, the Lyme stamps it out quite effectively. It is cruel, although I know the bacteria doesn’t really check a calendar.

I did, however have a fun time playing some classic christmas songs from my monster christmas book, which I absolutely love! All those familiar songs are easy enough to play too, so there isn’t much thinking involved. There is something wonderful about traditions; they wrap you up in a wonderful warmth and fill you with a feeling of belonging.

Some of the best presents I’ve ever received, however, aren’t the kind that came in beautiful boxes and bows under a tree. The most cherished gift I have ever received are intangible. Is there anything quite as wonderful or perfect as love? If there is anything more important or beloved than a friendship, what is it? Could there be anything more precious than compassion, more blessed than a smile, more valued than a kind word? Is there anything that could be more special than this, all, every, moment?

But of course, none there are.

Pincushions

Yesterday was not one of those days that, if I could remember it, I would look back with a warm/fuzzy feeling in my stomach. But I believe my patience and display of stoic behaviour (and diplomacy) could be looked back on fondly someday. When I learn how to change the damn needle myself, I will be able to laugh at this, certainly!

The day started out as one generally does, with sun rise over the cotton ball sky and all that sort of thing. General, when a smiling nurse enters the building while one is eating breakfast, quite frankly, one completely looses their appetite and thinks “what a jolly good way to start the day”, but perhaps with a few more choice words. 
The lady was very nice. A golf clap for being nice, definitely, and 2 gold stars for trying. I am afraid that is the end of the accolades. 
I recognize that a ‘Huber’ needle is rather tricky, but we figured that a nurse could handle taking it out. Well…well, not quite.  She certainly tried hard enough, which was un petiet peut uncomfortable, but what can one say? We (well she did all the work) to get the damn needle out, and then back in again for an hour. We had to call two different doctors in the USA in order to walk her through how to get it out, and back in. Grr. Eventually (apparently) I politely asked if there was someone on her team who would be able to do this. I tried not to be mean, but by this point I was very put out by all the pinching of my the tender, recently placed catheter. I was very annoyed that we had to go to ER in order to get the needle taken out, which is actually a very easy thing. We had to go through the whole ER thing, and FINALLY they did put in a new needle in, a procedure that took perhaps a minute, but was all day coming. I was feeling particularly bad on that day too, which didn’t help matters. 
Well its in. Needle numero dos. I like it as much as the first, maybe more *rolls eyes*. 
Honestly, it isn’t that bad. Or painful really. The idea of having a needle in my chest revolts me so much. I would love disassociate/disown the right side of my chest, but such things have technical problems. 

California.

It is sort of nice being home. Familiar, and it makes the ‘stuff’ a little more tolerable.
I saw a lot of the people I used to know, which was amazing! They are all so different, taller, older, its wonderful! It makes me feel a little more normal to just be able to hang out with old friends, and just relax.

I went to see the doctor the other day, which really wasn’t so bad. Most of the Lyme doctors just talk about the symptoms, rather than poke and prod very much, for which of course I am very grateful. They did, however, ‘access’ my port for the first time, which wasn’t quite as fun as I thought it would be *rolls eyes*. Its not that it hurt, because really there was very little ‘true’ pain associated with it. Even the stitches don’t hurt, but then again I am on hella strong meds, so that might have something to do with it.

Anyways, I didn’t watch them put it in, put the feeling was rather bizarre. The port under your skin must be sort of pinched/pushed in a very unnatural way which is very uncomfortable.

I went to the bathroom after, and cried a little, for my life, I guess. The thought of having a needle in my chest was just overwhelmingly awful. And the thought that I will have a needle in my chest, everyday, changed every week, indefinitely, scared the shit out of me, and I wanted to give up right then and there. But that sort of weakness is temporary, the kind that just knocks the knees out from under you for a moment, and brings your heart rate right up.

Of course I am way over that by now. I do not permit myself such displays of weakness often, because my greatest healing power is in my optimism. But I have a touch of the ‘realism’ in me, which wacks its hard, steely reality into me every now and again.

Everything, when it is fresh, and you are alone to ponder it, seems a million times worse. That is a darkness I fear most.

The Onomatopoeic Procedure

Today- well gosh, its now yesterday!- was a very…new. And different. The kind of day you hope you only get once, lest it’d ruin the memory.

I’m in California. Stereotypically, it was sunny today, and I barely needed a sweater. We went on a wonderful outing, and spent some time at a doctors office. A doctor of vein related thingys (okay…there is  a science word I could insert here, only I’ve clean forgotten it. Blast.), who was very nice. And on time (woah bear.).

It went well! I should start by saying that. The proof is in that I am writing this now! The procedure is simple enough. Wash wash. Snip snip. Push push. Thread thread. Glue-a-dee Glue. See, not so bad?

I had to have an IV in. I’m totally pro at dealing with this now. We can count pinpricks, if you like. Just two, tiny little bruises on the back of my hand, bringing to mind the bite of a little snake. And hardly a mark in the crook of my arm, so little so that it looks like a faint scar! Kodos to her, hunh? Drip drip.- I forgot that in the above onomatopoeic poem- a little saline, and some numbing stuff.

My chest looks GROSS. Not gonna lie. I miss the good ol’ days when it was just me, no plastic and cuts and such. The top incision is tiny, half-inch. I wonder what it feels like, cutting through skin with a scalpel? It makes my little waterproof shell and stretchy covering seem rather flimsy and useless, rather like the first drops of rain ripping wholes in an umbrella. Anyways, through this first little incision, I think they slide a little string/tube/wire/whatever down the vein they’ve found, and down. I don’t really know why. Ask a grownup. Now, once they’ve done whatever it is they’ve done with that, they make the ‘cut’. Its about an inch and a half, give or take a bit of my skin, and that is where it goes. As it is now in me, I suddenly feel awkward talking about it. My little new plastic bit (I’m slowly being bought out and replaced!). Its about the size of a quarter, only round, like those bouncy balls you get out of quarter vending machines in the antechamber of malls. They have to push  it, and less than and inch from the incision. That is very uncomfortable. Force of that magnitude had yet to be felt by that part of my body. Ow. Quite impressive force I might add!

 It feels big under my skin, which is currently stretching to keep up with the new thing. You can feel it from the outside. A ball. A lump. Under the skin. Above 2 thin burgundy lines. Surrounded by a hardened purple tinged layer, which is like skin glue, to hold the skin together. It was stitched, too. Neatly.

Its sensitive. To touch. Or tense my chest muscles. My heart feels huge in my chest, as I consciously will it to beat a little more to the left, farther from the new bits.

Oh I’m on a lot of pain meds. Oh I’m in a lot of pain (generally. today was a bad day all round). So I may not be making the words go together nicely. I took pictures of the wound. I think it is better to have that sort of thing facing you. If I don’t look at it, it will be the monster creeping under the bed, the dark shadow in the night, the blackness of midnight, and it will be magnified and blown out of proportion. Everything looks better in the light. I’m debating whether or not to post the pictures. I’m thinking, well, on one hand, if you have to get a port in, maybe you’d like to know? Maybe it would help to see? If it were me, I’d want to know. Its better out there, than dark and wild hidden.

If you are going to get a Port in, know that if you are anxious about it, about the unknown, that it is not as bad as it seems. And I also know that that doesn’t help. But, Lidocaine is greeaattt. Yah, it hurts a little after…no…actually it is more just uncomfortable. It feels awkward and unnatural, but damn straight it is!!

It was really hard for me to be able to face this. Blood turns my stomach, even spilled tomato juice. I took this picture.

The truth hurts. It helps, & I’ll take it.
“Only by acceptance of the past, can you alter it.”
~T.S. Eliot

Break Things

I’m in California. I have arrived. I actually thought I’d just curl up on the plane and stay there, travel the world on a Unite Express. Hopefully they were headed for the tropics. Somewhere where the sun blots out all the shadows, and tans excellently.

I was exhausted when I woke up this morning, which never bodes well for a busy day.

I had to transfer so many times today. House. Car. Out of Car. Bathroom. Airport Chair. Aisle Chair. Seat. Walk to the Bathroom. Back. Aisle Chair. Wheelchair. Car. Car. House.  I may have missed a few transfers there, but you get the general idea. Going up up up made me feel sick too, so nauseous. You know that feeling when you take of, and for a moment you get so heavy, before your weightless (it happens in elevators too)? That feeling drives me mad.

But we’re in a hotel now. And its quiet now. And there is no moving. I feel so nervous about tomorrow. With a hand on my heart, I wonder what it will be like to have plastic under it, in just a few hours time. The idea makes me want to break things.

Lines Drawn

We went to ER the other day, so they could fix my PICC line, which had a tiny crack in it. Once it gets ‘compromised’, you are at risk of infection, which doesn’t sound like too much fun to me. We waited in ER for close to 7 hours, waiting, waiting, waiting (I read ALOT) until finally we were able to see a physician. Ironically, it was the same physician who I saw in the summer when I had a really really high fever, the night I lost my memory. It was like a kick in the gut of recognition seeing him, but also I realized that this doctor would be just as unhelpful now and then. And, if you can believe it, his knowledge of Lyme disease had not increased over the year and a half since I’d discussed it with him. He told us, after all that waiting, that they simply could remove the line, but couldn’t put another one in, because no physician would take responsibility for it. But I can’t blame them; putting in a PICC line for a Lyme patient would be like waving the Red Flag in front of the giant, charging IDSA bull. For all the discomfort involved in putting IN the line, it didn’t hurt at all to get it pulled. Well, no complaints about less pain!

Unfortunately, that means that we have to get the line put back in, in order for me to start my IV treatment again. Unfortunately, that means going to California to get it put in, the closest doctor to do that kind of work for a Lyme patient. Doubly unfortunately, I think I am going to have a ‘PORT’ put in. The world alone makes my stomach tighten and my heart quicken at the thought. If you don’t know what a port is, I will try and describe it to you, although I probably won’t do it justice *rolls eyes*. It is a small “bubble” (well I think it kinda looks like a drum, or a push-button, but thats just semantics) inserted UNDER the skin, usually on the right side, under the collar bone. And then a line is fed into the vein. Basically. It is a little minor surgery, which all and all doesn’t sound too bad. The part that I find unappealing is the part that involves puncturing the “bubble” with a needle (gulp) and injecting the ‘stuff’ into you. This is the little snag. You see, just thinking and typing words like ‘puncture’ and ‘needles’ or ever ‘stuff’ makes me woozy. My head gets hots, and I feel a small trembling in my arms and legs, and I feel faint. So you can feel why the idea of a port, scares me. Yup, totally terrified of the idea. Yuck. Yick. Yeulch. So we’ll wait and see. We’re going to California next week to do ‘this’. So wish me luck.
Yuck.

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