Whatever…Nothing!

Yesterday, I (with my Mommy) was running late for my pain specialist. I hate running late. It stresses me out. I think it is incredibly rude. But, yesterday, when my Mommy was apologising for making us late, I was just ‘whatever.’

Then I thought about it and I’ve been ‘whatever’ for quite a while. It’s not such a bad feeling – it’s stress-less, very laid back and unemotional. But it’s very nothing.

I also noticed that I haven’t been writing anything personal on this blog – it’s been all about research and studies. It’s because there is nothing.

I think I’m on too many drugs…

When I was first diagnosed, (other than a quick dose of steroids) I was immediately put on Lyrica. Anytime I felt more pain, the doctors increased my dosage…my current Lyrica dosage is 225mg both morning and night.

I also take 150mg of Sertraline for depression – it used to 100 mg but during this ‘whatever, nothing’ stage, I felt that I needed something extra. My GP was happy to increase the dose. There’s also 1100ʮg per week of Thyroxine for my under-active thyroid; the Pill (I went off it (because who’s having any sex?) but my periods were unbearable!); and, of course, there’s all the supplements that we’re supposed to take: vitamin D, Red Krill Oil, D-Ribose, Sam-E, CoQ10, and a multi-vitamin.

Anyway, my point is that no-one tried anything except the Lyrica…why not?

So, having visited the pain specialist yesterday, we’re trying something else: I’m running out of all the supplements at the moment, so I’m just going to stop them as the bottles empty; and I’m going to wean off the Lyrica:

doses

Because this ‘whatever, nothing’ just isn’t good enough. I want more. I NEED more!

Blast Off -2 days

Two days until the beginning of the hospital visit (again!)

When we (the Team: my pain specialist, Mommy and me) decided we were going to try this ketamine thing again, my doctor suggested we put in a central line instead of trying to find veins for a cannula.

You might remember I had a lot of trouble with cannulae last time: 6 wonderful needles into my veins instead of what should have been only 2 or 3, and then, finally, a subcutaneous cannula in my tummy – to which I had a horrible reaction. So you can imagine how happy I was to hear that this wasn’t going to happen again.

In fact, I was so happy that I didn’t bother to ask any questions…off to Google I go, and now I’m a bit worried…

A temporary central line is a short-term, long, fine catheter placed in a vein, with an opening at each end used to deliver fluids and drugs. The central line is inserted through the skin into a large vein that feeds into a larger vein sitting above the heart, so that the tip of the catheter sits close to the heart. There are several veins that are suitable for access, and the line may be inserted above or below the collarbone, on the side of your neck, in your groin or at the front of the elbow. The actual skin entry site depends on which vein is used. AAAARGGHHHHH! I am really hoping they choose above the elbow – I seem to have gotten that impression from the doctor.

picc for procedureSo, at 9am on Wednesday morning, I am expected to arrive at the Radiology department of one hospital, where an interventional radiologist will use x-ray and ultrasound guidance along with minimally invasive techniques to insert a special hollow needle. Supposedly, I will be under conscious sedation (a twilight sleep) and be given pain medication in order to minimize any discomfort. Bit, it really is beginning to sound VERY scary!

A tourniquet will be applied to my arm (hopefully – I really don’t like the idea of a needle going anywhere near my neck!) and the area is cleaned and draped; a local anaesthetic is injected into the skin near the vein. The catheter will be inserted through the needle, threaded through the vein and positioned so the tip of the catheter is in the large vein that carries blood into the heart.

Next, about 3 hours later (or so I’ve been told, although my Google searches says it only takes an hour), I will go to another hospital. No, blood will NOT be gushing from the protruding tube! When the line is not in use, a plastic cap and a clamp to prevent leaking of blood close any part of the line that sits outside the body. It should be secured with a “Stat lock” device (ie without stitches), and can be left in position for several weeks to months as long as it does not become infected. Thank God I only have to have it in for a week!

And, then, the ketamine experience will begin again…