Nerve pain

Haven’t blogged for a while. Sorry to my one or maybe two viewers ūüėČ

 

Ever experienced it? Some backstory; I’ve had shingles twice. Same place both times; top left of my face. Shingles, weirdly, is just one one of your bodies sides for some reason. Anyways, they got treated both times. So didn’t really think about it when I got home after some weeks, but I started getting some pain exactly where I had shingles. I didn’t think about, since I’ve had various random pain throughout my life.

The pain itself. I had never, once in my life, ever, been forced to my knees, screaming out loud from any pain until I had this nerve pain. Wow. It faded away, but wow. One of the times I’ve scared my mother like that.

Imagine a heated up knife, stabbing you in the face, twisting the knife. Have that for 5 seconds (couple of minutes in my mind), then carving upward on my head, twisting again and do that a couple of times more. I’ve experienced lots of different kinds of pain, but this takes the cake. And I had NO idea this could happen! It was treated, right? :p

Anyways, it was handled with Lyrica, some nerve pain medicine. Now I have no pain, but a VERY annoying itch inside my eyebrown that can’t really totally be quelched. Very annoying, but better than the alternative.

 

I’ll try and blog more often, sorry!

 

 

Auli

ECP

Going to the hospital in 12 hours. I’m having a treatment called¬†Extracorporeal photopheresis, ECP for short. It’s used for various skin problems.

I’m taking it because… no one really knows why I need it, I just do. Story of my life? :p They think it’s either because my body reacted to some kind of medicine/treatment or the GvH after my bonemarrow transplant.

What happened to my in September/October in 2012 was that my skin turned red. Sunburnt-red. It basically looked like I had Red Man Syndrome. What it did, at its worst, was making my skin red and liquid-y (so my stomi basically fell off xD). The worst thing it did, though, was making my skin really, really hot. All the time. Which doesn’t sound THAT bad, but all the external heat made my internal heat very, very cold.

We have a heater in the basement (where I basically live) and if I had the heat on lower than 30*C/86*F I would freeze and shiver. I remember I sat outside in the 26*C/78.8*F with a jacket and beanie and froze. So I shivered for months. It took away my energy, because my body had to use it to try and get warm. It doesn’t sound that bad, but trust me, it was bad :p

Back to the ECP. It worked on my “redman syndrome”. Which was great. It took over half a year until it finally worked at max, but at least it worked. It’s a simple treatment. I basically sit 1.5-2 hours in a chair with both arms still because of the needles in my veins. Quick version of what happens: My blood is drawn and goes into a machine. The machine does it’s thing; takes my blood, centrifuges it and UV-light the white blood cells. Then I get the blood back. That’s pretty much what it is.

I started out doing it every 2 weeks for half a year+, then went to every 4 weeks. I did that for about a year and finally got up to every 6 weeks. Then I got some kind of stings or bite that they don’t know what it, but they are small red sores that go dry, skin is peeled off, it gets red, gets dry and white and rinse and repeat. So back to 4 weeks for now.

 

That’s pretty much it.¬†It’s amazing what is invented and the people who do invent it are geniuses in my eyes.

 

 

Auli

Broken teeth, broken spirit…

I had no idea what to blog about. I have some thoughts, but… well, now chewing this chocolate with nuts in them gave me a reason; it broke.

Yeah, it was about 30% broken from before and then suddenly I felt myself chewing something pretty hard, which turned out to be pretty much the rest of my tooth. It doesn’t hurt, so I guess it’s not THAT bad, but when you start to lose teeth at 28 you get kinda sad. It’s not a visible tooth, so it’s not that, but I kinda like having my body. Every part of it. Like that one Futurama-episode with the old, almost dead robot-cannon that said: “My body might be old and broken, but it’s my body.”

I guess a thousand days of puking might have a slight say in how awful my teeth are. Now I will feel bad for myself for some hours and then back to the regular “eh, I don’t really care about much” state of mind. So just a little update.

 

 

Auli

Some quick maths!

Right now I’m very, very bored. I’ve been thinking, for a long time, to actually get some exact numbers or get my entire medical journal and check how much I’ve actually spent in a hospital/been sick.

I’m going to discard after the bonemarrow transplant for now. So from 1992 to 2012-ish.

Here we go:

  • a dose of chemo average every 2.5 weeks (from every day to every 3 months (rarely)) for 20 years

52/2.5 = 20.8      So lets say 20 doses a year.

20*20 = 400¬† ¬† ¬† That’s 400 doses of chemo over 20 years.

For the first 15 years I had to drive 2.5 hours to the hospital. Get my chemo. 2.5 back. Then the last 5 years or so I got it at my local medical centre.

  • I usually got very nauseous. I puked and felt like crap for 2-3 days after. I usually took the chemo on Fridays after school so I wouldn’t miss that much. So:

400*2 = 800 days of puking. No wonder my teeth just break randomly now.

That’s years of feeling like crap. And this isn’t even with all my hospital visits where I had infections, pneumonia or various other stuff I got.

 

I think that’s it for now. Don’t worry. There’s more xD

 

 

 

Auli

Histiocytosis X

It’s not called that anymore. It was in the beginning. Langerhans cell¬†histiocytosis¬†is a type of¬†cancer¬†that can damage tissue or cause lesions to form in one or more places in the body.

I’ve had this since I was 2.5 years old until my bonemarrow transplant in February 2012. I’ll most likely write a bit about that on a later date.

You basically have one or more of three types of LCH:

  • Bone lesions (pretty much “eats” or dissolves bone tissue. Some times just making a seemingly random spot soft or completely dissolving it). I’ve, luckily, only had this.
  • Skin
  • Organs

If you only have bone LCH, it normally “burns out” itself over some years or during puberty. It’s not fatal. Skin and organ can be fatal. (Correct me if I¬®’m wrong here, please)

The treatment is usually some type of chemo, cortisone tablets (prednisone) or radiation therapy.

 

I will go through my 20 year old period in another post. Kinda want to ease you in, I guess.

 

Auli

Mondays…

Everyone hates Mondays, right?

 

I don’t really know what I’m doing with this blog. Different reason, I guess. Self help, having something else to do, I don’t know if even ONE person will see this blog, but maybe I’ll hopefully be writing something that people see as help.

I’ve experienced a lot in my short life of 28. Not travelling, meeting loads of people, being good at school or making a life for me. My life has been mostly sickness. A lot of sickness. I’ll most likely write about it going forward.

 

But now is Monday. The day I grue. The day I’ve, for over 6-7 months have said to start over and be the best I can be. I guess many have the same problem; to start being the best. “Next Monday I will start to be the best I can at school,¬†next Monday I will start to be the best I can at working out,¬†next Monday I will start to be the best I can towards friends and family or¬†next Monday I will start to be the best I can at my job”.

You usually start off Monday and Tuesday pretty good, right? Then you might get some kind of setback in a day or two or 12 and you go “Darn.. ok, I’ll just break the promise to myself this ONE day, then back to it!”. You don’t get back to it. “But NEXT Monday…!”

That’s been the last half a year for me. I bet most of people have been like that some days, weeks or months. Even years. I started again today and I failed, at least, SOME of my goals, again. But I’ve realised that being the best you can for just some days, or a week is a hell of a lot better then you’ve been. So just jump back up on the horse again.

 

One thing I’ve learned over the years of being ill is to keep on going and try your best to be the best you can be.

 

 

 

NOTE: This blog will mostly be about my experience of being sick most of my life. And maybe some stuff that will help YOU!