Membranous glomerulonephritis. Round 2. Week 3.

End of week 2 on meds. Good thing I'm not a contender for The Next Top Model, cause I'd so win that show ;) Just look at the splendor of that chin and the energetic twinkle in my eyes... 

Week 3:

Medication: 150mg cytotoxins (Cyclosporin), 64mg cortisone and other assorted goodies.

As I posted earlier, skin sensitivity is now a factor. Any seam feels like barbwire, clothes have the texture of sandpaper, and orgasms are quickly becoming a thing of the past. It's time to make moisturizing a new habit. If you won't you'll make permanent new best friends with stretchmarks. If you haven't had a facial, now it's too late. The skin on my face might look rosy and healthy, but in reality, the swelling is camouflaging some serious clogging of the pores. The tweezers are in constant use, because now, excessive hair growth is one of my companions. I don't mind looking like a freak if I have to, but I do not intend to find out what the offspring of The Bearded Lady and Quasimodo would look like. The hair on my head has also changed texture; it is now as smooth as a baby's bottom, and totally unmanageable. Hairspray accomplishes nothing. I look like a hobo in my sweats and unkempt hair, but at least I’m semi comfortable and without a mustache.

The ever present swelling has started to affect my throat, and from now on it will only get harder and harder to breathe. I expect to be sleeping sitting upright within a few more weeks.

My mind is being a bitch. It closes down during the day and goes into overdrive at night. Insomnia is a new acquaintance, and so is chattiness. Talk, talk, talk... I'm hardly ever quiet around people. Given the chance I'll talk until hoarse. Once, in band camp... No, really during Round One, I spent half an hour talking to a stranger in the grocery store. What about? Well, he was trying to get to the sugar, upon which I was leaning, so naturally we had to contemplate whether something as sweet as me would actually fit in to his cart.

You can either feel dumb and embarrassed about things like that, or just go with the flow. Me, I go with the flow.

Tip: Moisturize and shave. Place a notebook and a pen by your bedside table. If you don't purge you'll never sleep. Clear a space for yourself somewhere in the house where you can do all the projects you have thought of, but do not give in to whims with longtime consequences. Painting the entire house purple might seem like THE BEST IDEA EVER right now. But trust me, that impression won't last. Tomorrow it'll be lime green with pink polka dots instead. Take the advice and hints your friends and family will undoubtedly give you and calm down, even if it's hard with all the accumulated manic energy. Do the smaller projects instead, reality is you won't have the energy to tackle the bigger projects anyway. You're just mindfucked, that's all.

My doctor told me to stay away from people who are sick, and especially sick kids, due to the cytotoxins that finishes off whatever immune system the cortisone has left you with. I'd like to add: Stay away from persons that are in plentiful contact with furred animals. They carry mites, which can give you eye infections. Also, because of the vanishing immune system, make sure you load up on antiseptics and that you treat every scratch and cut, no matter how small. Trust me, I have scars from Round One to back me up on this one. Preventative antibiotics is a part of my cocktail this Round, but I’m still not taking any chances.

A paper cut turned into a infection the size of a tennis ball during Round One. It had to be cut open and drained for months. Hurt like a son of a b*tch, and left me with these "vampire bite marks". I'd rather give birth without painkillers (again) than go through pressing the puss out of something like that once more.

Sincerely,

Pepsi-Mama

Membranous glomerulonephritis. Round 2. Week 2.

End of week 1 on meds. Tired and swollen.

Week 2:

Medication: 150mg cytotoxins (Cyclosporin), 64mg cortisone and other assorted goodies.

Week one was spent learning the effect my medication had on me. When to eat, when to sleep, when to think. I wake up energetic, but get sick and weak 1,5 hours after the meds, and it lasts for a few hours, longer if I don't eat regularly. After that I crash, and nap for about 2 hours. The nap works wonders. I wake up to some energy and a clearer head. Pretty soon it will be time for meds again, and the hamster wheel goes round and round...

Week two came with its own challenges. My taste buds started changing; Ketchup without added sugar now tastes sweeter than chocolate, and all kinds of soda tastes metallic. This will mess with your eating habits and screw your eating patterns up further. I've found that high protein, modest fat and low salt serves me best. Small portions, but more often, and I add carbohydrates for an extra boost as needed. 

One of the seriously bitching side effects of cortisone is swelling, and it gets bad as you'll see from my pictures. From Round One I've learned that all the different stages of swelling will give me a new problem to deal with. This time I really started to feel the swelling during week 2. It starts in the face and then slowly ascends over the throat, neck, shoulders, back and upper half of the abdomen. By the end of the treatments I know I will look like Quasimodo from the Ringer of Notre Dame, face and hump and all, but there's nothing to do about it.

For me, the inability to concentrate, is so far the most disappointing thing about all this. For a super organized, highly efficient person, like I used to be, that’s frustrating as hell. Think 'high as a kite and dumb as a door nail . That's me, right now anyway. I get spurts of manic energy, overdo it and then crash, all with the attention span of a three year old. Needless to say, I try not to drive any more than necessary, and I know from experience that this is not the time to make any long lasting decisions.

Tip: Beware of overeating when your taste buds go haywire. The low levels of energy had me aching for energy drinks, which normally tastes metallic and artificial to me, but now tastes like canned heaven. Problem is, they, like any soda, also add to the swelling, and leave your mouth dry. Besides, the effect really doesn't last that long, and only makes you crash that much harder later on. Find healthy snacks to boost your energy, and don't feel bad if hardcore carbohydrates is the only thing that'll do. Listen to your cravings, your body knows what it needs. It's better to feel a bit like yourself than worry about your weight. Weight can be gained and lost, but feeling like shit will stay with you and eventually drag you down so badly you'll get depressed. So eat, and be happy. Also, fishoil is supposed to be good for your kidneys, so you might want to get some of that. I know it is consistent with the type of cravings I've been having, so I'll be picking some up.

By now you'll want to make sure you have a good pair of tweezers, sufficient lighting in your bathroom and plenty of shaving gel. Hairier days are coming. Also, visit your local pharmacy for some basic but high quality moisturizer, you're gonna crave it.
High quality bed linen, as soft as you can get them, and seamless underwear will be good purchases. Skin sensitivity is around the bend.

Sincerely,
Pepsi-Mama

Decluttering tips #1

# Blankets: How many people are there in your household? Let everyone keep their favorite one for those chilly nights when they're needed, and one as a part of the emergency kit you should have in your car, but sell/give the other ones away.

# Wires: Label your tech-wires and get rid of duplicates. Hint: I found I could use the same wire for both the camera and the mp3-player.

# Bed-linen: A maximum of two sets/bed  is enough, at least for those of us with easy access to a washing machine. If your household is big, 1,5 sets/bed might be sufficient. After all, one rarely changes all the linen at the same time.

# Paper: Keep one notebook for everything, and maybe some paper for your printer if you have one. That's really all you need. Bonus: Going through the notebook later during the year will help remind you of all the fun you actually did during the year.

# Candles and assorted holders: We seem to get these every Christmas or birthday. Stop feeling guilty and just throw them away. I've kept a generic one which I can change with the seasons. Sand and seashells in the summer, red candles and moss/pine cones/i.e. during winter. It also serves as a incubator for plants.

More to come!

Sincerely,
Pepsi-Mama

Membranous glomerulonephritis. Round 2. Week 1.

One of the more noticeable changes is the one on ones appearance. Medication is not easy on the looks. But fortunately, I'm not too vain to medicate. This is me, day 0. Without makeup I might add, but surely you already noticed :P

Day 0

Week 1: 

Medication: 150mg cytotoxins (Cyclosporin), 64mg cortisone and other assorted goodies.

He spoke gently, tilted his head in an attempt at sympathy.

Am I distressing you? he asked as my blood pressure measured 175/110 (True number, btw). Me distressed? Why doctor, whatever do you mean? How could I possibly be distressed? Being told I'm back at ground zero after a year on, and just four months off, meds can't possibly be distressing can it?

As he droned on on the new and improved side-effects of the planned medication; this time almost guaranteeing diabetes, I more or less zoned out whilst he told me of the weekly blood-sugar and blood-pressure appointments, the bi-weekly other testing, what to look out for, and other signs to check. As of yet I'm not sure I got it all. I can pretty much guarantee I missed some major important stuff. I know I missed the 'take it easy and relax' part in particular. Oh, and breathing. Forgot about that too :)

I got two months of sick-leave to start with. The plan is to half the cortisone within a month.

The side-effects I experienced during week 1 were: Nausea and cold sweats about 1,5-2 hours after taking the meds, and a complete inability to concentrate on anything more than a few seconds.

Tip: Eat a sturdy but healthy breakfast before taking the pills. I skipped breakfast the first day, and all those meds on an empty stomach hit me hard. An all time low energy level is to be expected, so I've started drinking a Green spinach smoothie every morning to get the extra energy I need. The smoothie recipe I use comes from here.
You'll also want to get a deep cleaning, but non corrosive facial, and if you like me got some grey hair, a coloring. Those won't be possible later on.

Sincerely,
Pepsi-Mama

Membranous glomerulonephritis. Round 2.

In December 2010, I went to the doctor's, having legs swollen to the size of three trunks. It took 6 months before I got my diagnosis: Membranous glomerulonephritis. Treatment with high doses of cortisone started immediately.

Now I'm undergoing Round 2, because after only 4 months off meds, the Membranous glomerulonephritis is back. This time the coctail is cortisone and cytotoxins.

So, that's what these posts will be all about. Battling the Membranous glomerulonephritis. Round 2.
A kidney disease I'm told is kind of rare, and for which in my case, they do not know the cause of. Apparently it's not that common, at least not here in Finland. 

I'm planning on posting photos and weekly comments on the side effects I'm experiencing. 
Please realize that everyone responds differently to their medication, and that this is merely my experience, NOT a foretelling of your journey should you receive the same diagnosis and treatment. Drug intensity, duration, and personal reactions varies. Still, my hope is that by telling you my story, I might offer some insight on what's to come and provide helpful hints.

Sincerely,
Pepsi-Mama

Sant

Duktighetshysteri, läs mer här!

Ventilating

Me and you and you and me
No matter how they toss the dice, it has to be
The only one for me is you, and you for me
So happy together

Bull.

The Turtles were full of it.

My boyfriend of five years and I have been living together for 10 months now, and let me just say I have no idea how people do it without losing their mind. Don’t get me wrong now, I love him dearly. I just want to kill him and string him up in the garage sometimes.

Our problem; Communication.

We think we’re clear and precise

 …and we’re obviously not.

Bitching on the down-sides of living with the man you love is easy when he’s not around to disagree, so to even out the Karmic repercussions; here’s a short shout out for the up-sides: 

• Bulging arms and other assorted eye-candy readily accessible 24/7.

• No problem working with heights anymore. Or cans. Or the heater.

• Always a partner in crime ready for whatever dumb idea I should come up with.

• Toasty warm feet.

Sincerely,

Pepsi-Mama

Things worth believing in

Secondhand Lions – Uncle Hub’s Speech:

"Sometimes the things that may or may not be true

are the things a man needs to believe in the most.

That people are basically good;

that honor, courage, and virtue mean everything;

that power and money, money and power mean nothing;

that good always triumphs over evil;

and I want you to remember this, that love…

true love never dies.

You remember that, boy. You remember that.

Doesn’t matter if it’s true or not.

You see, a man should believe in those things,

because those are the things worth believing in."

This was originally a part of Marelisa's post. The woman is wonderfully inspirational! If you'd like the whole thing, the link is here! Make sure to watch the Britain's got talent video she posted - I cried my eyes out, it was so beautiful!

Embrace your inner weirdo

Read something lovely here today, and wanted to share!
(make sure my daughter reads it later on)

After

Six shoppingbags later this is the result. Could use a bit of further weading, but for now, I'm content.