Membranous glomerulonephritis. Round 2, Week 46.

Medication: 8mg immunosuppressants (Advagraf), 32mg corticosteroids (Medrol)  and other assorted goodies.

F#CK!

F#CK!

F#CKETI-F#CK-F#CK!!!!!

After easing down to 2mg corticosteroids, 7mg immunosuppressants for several months, a new test showed my kindeys acting up again. Raised it to 4mg corticosteroid, and the proteinuria results still got worse. Now I'm supposed to raise the corticosteroids to 32mg. Just as I was starting to feel normal again. Well, "normal" in any case.

32mg is a Quasimodo meets the Smurfs sitcom. It's Oh-My-God-Can't-Feel-My-Legs and Trippin'-All-Over-The-Place slapstick. 

 I. Do. Not. Have. Time. For. This. Shit!

I'm worried about my job, I'm worried about being a burden to my family,  I'm worried about my sex-life, I'm worried about the baby we had planned never happening - I'm already 36 for God's sake!, I'm worried about not having energy enough to be a present mother for my wonderful teenage daughter, about the rite of passage trip through the U.K. I have planned for next summer for her, I'm worried about my social life, about not being able to be there for my friends, I'm worried about the home improvement plans we have for next year, I'm worried I'm missing something obvious to worry about and that it'll come to bite my ass later.

Do I need to say I'm feeling pretty sorry for myself? That all my zen is gone? That I want to rip apart the Mala bracelet and just scream for as long as I've got breath?
Don't worry, it wont last long. I'll get my shit together, I always do. But right now - this is how I feel.

Sincerely,
Pepsi-Mama

A Walk in the Forest

Sunday afternoon. Mr. Man is surfing his I pad. I'm flitting through TV channels, overworking the remote. Nothing can root me today. I feel haunted, restless. No book can captivate me, no project feels satisfying enough. I've got to get out of here.

The smell of fresh pine, salty sea and the heady sweetness of decomposing leaves and moss greets me as soon as I open the car door to step out. And silence, blessed silence. Finally I can think! Finally I can hear my inner voice. In the distance I hear waves rushing to their demise over the stony shores and now and then the honking call of swans break the silence. I look around. The darkest corner, the most twisting road, that's the one I want to take. Ever further along the unknown until I'm good and lost. Or at least until I can pretend to be. And never, never ever the same route back.

Without the usual fears crippling my mind; the fear of falling; the fear of not having energy enough; of forgetting this and that; I step into the forest and am immediately enchanted. God how I've missed this!

The exertion heats me, flushes my skin and the air feels gradually colder, crisper. I'm panting like a dog and the sound of my ragged breaths feel disturbing in the stillness. I'm rushing in for sanctuary, trusting my legs to carry me as far as necessary. Fleeing almost, from modern age, plastic and metal. My lungs labor for air, and the clean air burns like a crystal through my lungs. Taking all the filth in them and rendering them clean and new. A cigarette would lessen the icy impact, but I can't smoke here. It would be sacrilegious. The forest is the only holy place I recognize, my only place of worship. It's a cathedral of peace and quiet. Smoking here would be offensive. Unnatural. Abominate.

 My sight is the last of my senses to surrender to the intentional slowness that is being in the here and now. Twisted tree branches, perfectly clear springs, mossy hills and the gentle swinging of grass catch my eyes. My imagination runs wild. I completely can understand how tales of trolls and fairies came about. Better stories of them than of cars and factories, of stress and finances. Sadly, for a creature capable of so much, our imaginations have taken a turn for the duller, more politically correct and morally nonthreatening.

I've walked good and long when I notice the shadows getting deeper. The sun is slowly setting, and I need to get back. I wish I didn't have to. I wish I could stay longer, just keep on walking. I’m afraid I’ll lose my new sense of equilibrium and all of a sudden, that equilibrium is the most precious thing to me. It’s what I’ve been missing for so long, what I’ve unknowingly yearned for, and having it now makes me giddy with relief and lightness. As I approach the car, a heap of glistening blue metal in the middle of nowhere, I’m afraid of losing my sense of peace. Can I take it home with me? Will it last?

It does.

Sincerely,

Pepsi-Mama

Mastering the ’to-do’

When I was younger, I had a small black book. In it I listed books to read, doodled, hatched ideas, wrote down my thoughts, glued small pictures of beautiful things or artwork, quotes; pretty much anything and everything that rocked my world or made sense in one way or the other. But as I grew older, that little black book was slowly replaced by lists and fell into oblivion. Getting things done, taking responsibility, acting my age elbowed its way to the forefront, and being inspired, daydreaming and creating was something I no longer had the time for. I remember my younger self sitting in a corner of a busy bar on the weekend, writing page after page all night, nursing the same beer for several hours, compelled to get whatever it was out of my head and onto paper (journaling if I remember correctly). I’d love to get to know that version of me again! The only time I show the same frenzy now is when I’m paying the bills. The sense of accomplishment that gives me is sadly one of the highs of my life.

I’ve been living by my calendar for a long time. Problem is, the calendar soon proved insufficient; I still ended up making list after list after list. For groceries, for things to do around the house, of peoples birthdays and other small things to remember. I even have a list of thing to do for my own enjoyment should that time arrive. My handbag is full of post-it notes scribbled with very important things not to forget, just waiting to be added to one of those lists.

As the lists has grown in number, and each list in length, so has my exhaustion. Trying to organize my life takes up more time than I have to actually do the thing on the lists. And the longer the same things lingered on those lists, the more reluctant I become to get them done. I really resent them,  but can't seem to function without them either.

Recently I made a note of meditating. It had exclamation mark after exclamation mark and was circled with highlighter. At the time I thought nothing of it. But I found it yesterday, and something just clicked. How fucked up are you if you have to make a reminder note of meditating?? Man I’m a mess!!

So I'm daydreaming about a stressless life and how to come about it. In my dreams I'm throwing out all the lists and calendars and settling for something like this:

Very girlie, girlie. Very paired down yet happy, happy. Things to do is narrowed down to only one thing per day. What to make for dinner has always been one of the thing I’m always procrastinating over, since I really don’t like cooking, so it’s way out there – no way to avoid thinking about it. And so is keeping in touch. I’m terrible at it, and it grates on my conscience all the time. All the other little things that would normally end up on a list somewhere is listed under the enjoy! segment. A reminder of that with mindfulness, even mundane chores that usually would suck the life out of me, can be fulfilling if I just slow down.  And finally, the ‘what happened’ part to start me journaling again and to remember what to be grateful for. 

 However, this figment of my imagination is scaring the living hell out of me. How will I ever remember everything? The control freak in me screams in horror. So no, at the time this is not a viable alternative for me, but I wish it could be. I'll probably just do a post it note detox and work my way from there. Baby steps, right?!

Sincerely,

Pepsi-Mama

The scents of summer, or, I wish I were a dog.

I've used my nose quite a bit this summer. It started early this spring, too early really to be logical, but what can I say. Instant satisfaction is such a human trait. Of course I'm talking about the first barbecue of the year. The one where one huddles close to the fire, battling the chill of spring. The scent of the first sausages grilling came drifting from the neighbors yard, signaling the start of summer. A defiant start, certainly, at only +15 degrees Celsius, but a start none the less. After some time, that scent becomes common, and indistinct.  That's when the Hackberry takes over. The trees turn white with blossoms, and your nose gets another delicious treat. Lilacs are next on the list, then bridal wreath spirea and roses. Not forgetting the scent of freshly mowed grass, or the salty scent of the beach.

After rainfall we get treated with the scent of petrichor. The official explanation of petrichor has to do with plants emitting oils during dry spells, which seeps into the soil and are released by rain. But the explanation I like best, although it's not true at all, is that that's how it smells all the time, but that our human nostrils can't detect it unless the humidity is at a certain level. I shamelessly substitute the truth with my own fake, but more romantic version. (It just goes to show that sometimes the first thing you accidentally read on-line is the thing that sticks with you.)

Anyway, today this made me think that I might like to be a dog, if that's how the world smells like all the time for them. What a wonderful experience that would be! No wonder dogs run around sticking their nose everywhere! Although... What's up with the crotch-sniffing?
I'd most definitely leave that one out. 

*Woof, Woof*

Sincerely,

Pepsi-Mama

Membranous glomerulonephritis. Round 2, Week 25.

Medication: 5mg immunosuppressants (Advagraf), 8mg corticosteroids (Medrol)  and other assorted goodies.

It's week 25, and I'm feeling like a completely new person. The mirror is still showing me a preggers Quasimodo light, but I know Quasi was a good person so I don't fret about it. I'm on my second week of part-time work, and being back among hard working and driven people has worked wonders. Dancing around the kitchen to Going Loco Down In Acapulco only works so far on keeping your spirits up, and being back at work showed me I was slowly heading towards a defunct in the happy department. Now I'm suddenly noticing the sweet scent of lilacs in the air. Way to go, me!

Physically I've still got some work to do, but it's getting there. I'm not Bambi on ice anymore, so now I can start working on my endurance. Only problem is I hate to 'work out', and taking long walks is just so damn boooooring. I love to dance though, so my sister has promised to drag me to some Zumba lessons.

Tip: This one probably should have been mentioned earlier, but... I forgot. If you suffer from acne, have black spots or zits; do not, I repeat; DO NOT pop them. Scarring is almost guaranteed.

Membranous glomerulonephritis, round 2, week 22

Week 22:

Medication: 3mg immunosuppressants (Advagraf), 8mg corticosteroids (Medrol)  and other assorted goodies.

Caterpillar eyebrows. Facial hair aplenty,
but the hair on my arms and legs is gone.

If you've paid attention, you've seen that my medication has changed. After a couple of months with twice daily nauseating hang-overs, I was finally sent to a specialist who could change my medication into something less puke-able. I'm both pissed and overjoyed. Pissed because it took them this long to take my nausea seriously, and overjoyed because I'm no longer feeling like crap on toast. 
Yeay for me! (Big freakish smile)
I'm on sick-leave until the end of May, making it almost six months of staring on the same four walls. It's getting depressing, and even the promise of a new summer approaching isn't enough to lighten my mood. I'm soooo ready to get back to work, but I haven't been on the new meds long enough yet to evaluate what, if any, side effects they'll have. 
I'm still weak, and by now my back muscles are pretty much gone as well; Bending over to pick something up cramps my back. No gardening for me this year. (oh nooo.... hehehee)
So to summarize: No muscles nor fitness in sight, but finally feeling like a human being. Definitely could be worse!

Sincerely,
Pepsi-Mama

I like being silly, or by a more sinister heading: Membranous glomerulonephritis, round 2, week 16.

Week 16:

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

As previously promised: Me as a china doll. Make-up by my 14 year old daughter. (And I didn't even get to peek)

Sincerely,
Pepsi-Mama

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.

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

Meanwhile, finished projects

Membranous glomerulonephritis, Round 2, Week 10

Day 0, and week 10 front and side.

Week 10:

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

Hi Folks,

Time for a short update: As I claimed, the swelling would get worse, and as you can see, it has. I tried taking a picture from the side to show the hump on my back, but all you can really see is the chin. Well, it's there, you'll just have to take my word for it :) I'm now officially Quasimodo.As you can imagine, breathing with that thing around your head and throat isn't the easiest. I've chased Mr. Man out of the bed with my snoring and gagging for air several times, and my back is constantly aching. Good posture is non existent. 
The muscle atrophy is now so bad that rising out of chairs is difficult, and I'm constantly afraid of falling, even when just walking around at home. During Round One I fell over my own feet for anything, and as a result I was covered with bruises and scabs that wouldn't heal. Even just taking the biweekly blood tests leaves me with bruises that takes ages to heal. My arms look like I'm abusing intravenous drugs or something.

On a more positive note; my daughter and I am planning a "china-doll" picture of me, just for shits and giggles. I hope to be posting the pic soon. Also, we've decreased the cortisone again, so I'm now where we planned to be after four weeks; on half the dose of cortisone. Took some time, but we're getting there...

Sincerely,
Pepsi-Mama

Membranous glomerulonephritis. Round 2. Week 7.

End of week 6.

Week 7:

Medication: 250mg cytotoxins (Cyclosporin), 48mg cortisone and other assorted goodies.

For week 7 the Doctors orders were to amp up the cytotoxins again, but to decrease the cortisone by -16mg. So good news! 
I've responded really well to the treatment so far. Some measurement had decreased by 3/4 (which one I do not know) and the protein leakage into my urine has decreased as well. I got two more months of sick-leave, which makes the total four months. I'm hoping I won't need all of that.  

On the flip side of this change is the nausea and tremors caused by the cytotoxins increasing while the high from the cortisone diminishing, and frankly, I'd rather be high and frantic than feeling like shaking shit turned over. I'm already tired enough to lash out at my loved ones for the smallest freakiest things after the last increase, so an even more nasty temper is probably only to be expected. Explain this to your family, and remember to apologize after one of your outburst.

What else? Last week the mother of all nasty vaginal infections plagued me horrendously. I still have sensitive dry skin on the rest of my body, and after experimenting with taking no naps during the days I'm now sleeping 6 -7 hours on a good night. I still need to take it easy during the two hours I normally would have napped though.
Also, I no longer have any muscles in my thighs. Rising from a chair requires holding on to something, and don't get me started on getting up of the floor. Think truck backing up, ass first.


Sincerely,
Pepsi-Mama

Project "Tin jars"

Tin jars are a hoot and a half! Look for tin jars at the fleemarket - you can redo the even the ugliest ones to something usable. These cost me maybe 0,5€/pcs.

Before: The black chalkpaint was discolored,
and the tin had other stains that didn't come off.
After: Tea and Chocolate tins. No more half empty cartons of still unused tea or
half empty bags of O'boy in my cabinets.

How do you like my new cookie jar?
Sorry, it was so ugly I never took a "before" picture.

Sincerely,
Pepsi-Mama

Overstating the obvious

The Bitchslap I got from Karma for thinking bad about my mother (see previous post) , was an eyeopener in more than one way.

Apparently I've also swallowed the text-trend  in interior design sink and hook.
This pic woke me up:

At the bottom left corner. What do I see?

I'm not blind, nor stupid. I can see there's tea there. Why the text??

I'm sooo painting this over. 

Then I turn around, and no less than 3 meters away, there's this hanging on the wall by the fridge: 

Huh. Guess I have to rethink the not stupid statement, right? 

However, this does not contain tea... Bazinga! 

After doing it's foremost duty; reminding me to take the meds I'm on, it also  holds an assortment of all the little knick-knacks I don't know where else to put, but which comes in handy in the kitchen. Such as rubberbands, breadbags-clips, toothpicks and extra fridge magnets.

But why haven't I scratched off the text? Poor guests! I always tell them to make themselves at home in my kitchen, and yet here I am misleading them terribly. He, he, he... ;)

By now I'm intrigued. What else text-wise is there really here? Quite a bit it turns out. 

Just in the kitchen area I found:

Sink backsplash.

After 1,5 year in the house, I still don't remember which knob turns on what.
The controlfreak in me loves the labeller so...

True.

Again, true.

Truth #3. Sign remade to magnet,
hanging on the edge of  the stove fan, facing the living room area. 

The living room area had been spared, almost. This is the Man's addition of text in the house and it's going out to the Party-Barn come spring.

Moving on throughout the rest of our little house:

Hallway.

Bathroom. Colorcoded sortingstation for laundry.

Little bathroom, cabinet. Labeller in use again.
Top shelf: Batteries-Plugs-Insects-Sun
Lower shelf: Medicines (Me, the Man, All purpose)

The little bathroom again. Small window, no real need for curtains,
 so why not a framed comic? I do not know how my mind works...

Desk.

Bedroom mirror. "Life's simple pleasures:
A seed to sow, a place to go, a walk to take, something to make"

Bedroom again.

What do you think? I'm thinking maybe I need a text-detox. I'm really overstating the obvious, aren't I?

Funny thing is, the only "statement" we have deliberately placed in our home doesn't even have text on it.  This is it:

Hint: It's not the lamp nor the fern.

Sincerely,

Pepsi-Mama