måndag 18 mars 2013

Vi har mycket att skratta åt imorgon.

Det är fredag natt. Vi ligger bekvämt nerpackade under täcken och har just avslutat dagen på det sätt vi vanligvis brukar; med ett avslappnat samtal om vad dagen har innehållit, när han vänder sig mot mig för att kyssa mig godnatt. Det är då han säger det, något så oväntat att jag får alldeles svårt att somna: 

"Vi har mycket att skratta åt imorgon"

Jag känner hur mungiporna åker upp, ögonen tåras. Skrattet och glädjen hotar att bubbla över och jag suger frantiskt på dem som på en favorit karamell. Jag sprängs inifrån av glädje.

"Vi har mycket att skratta åt imorgon"

Några enkla ord. Så mycket vackert innehåll.



tisdag 12 mars 2013

Membranous glomerulonephritis, Round 2, Week 13

End of week 12

Week 13:
Medication: 225mg cytotoxins (Cyclosporin), 32mg cortisone and other assorted goodies.

It's now been 4 weeks since I had any change in my medication, but I keep telling myself that the swelling isn't as bad as it has been. I can't really tell if it's wishful thinking or not, but it feels like my chin isn't hanging as low as before. Geez, there's a line I'd never expect to write... :)
I'm definitely not as frantic as I use to be, quite the opposite actually. I'm almost lethargic. My high as a kite days are sadly over. It's nice to be able to think rationally again, but the rapid degeneration of my body is taking some of the fun out of it.


The side-effects are the usual. What's new is a loss of feeling from my knees down. The closest I can describe it like is as though I've lost about 40% of the sensory capability in my legs. I can walk, but it's almost like I'm relying on the memory of the mechanics of walking. Countering unevenness is a slow process as I can't rely on my knees responding according to what the soles of my feet are trying to tell me. The general muscle atrophy is adding to that: imagine not being able to climb even one step without holding on to something, pulling yourself up. And having to rest, breathing heavily after just a few steps of stairs. Or grocery shopping feeling like a hardcore weightlifting pass in the gym. Yeah for me!
I'm also terribly dizzy whenever standing up or lying down. It's probably bloodpressure related.
The bruising is getting worse - I still have a great big one from when they drew my blood last time, four weeks ago, and another one on my arm from when I walked into a handle 6 weeks ago. Just imagine the state of the rest of my body... I could probably do stand-ins as a smurf.
Hangovers twice a day is another treat. The hangovers occurs 3 hours after I've taken the medicine, so I'm prone to believe that they are related to the cyclosporin, as I didn't have them during Round  One. I call them hangovers because that how they feel, and they are just getting worse every day. They start with a general feeling of queasiness, then the tips of my fingers and toes start burning. The burning turns into tremors and finally I'm shaking like a leaf and cold sweating. The upper abdomen swells and burns, and ends with me feeling like throwing up. This lasts for 2-4 hours. During the day I can sleep it off, but during the night this shit wakes me up. No rest for the wicked, huh?
Let's just say I'm hoping we can cut down on the cyclosporin at the next doctors appointment. ..and the blood thinners, and the blood pressure meds, and the...

Sincerely,
Pepsi-Mama