My daily pill intake

On the left are all of the bottles/blister packs of the pills I take. The photo on the right shows the pills. I put my cell phone in the picture for a size reference, because those pills in the middle (my cyclosporine) are BEASTS! When I first saw them, I thought they looked more like suppositories! :)

I spend a solid 1/2 hour every Sunday getting my meds ready for the next week.    I have to do this in order to keep everything straight, or else I'd completely screw it up and forget all the time.  I have to admit, though, that it is one of the things I hate the most.  Here is a list of the things I currently hate:
1. Spending the time to do my meds
2. Counting the pills
3.  I hate having to do this EVERY FREAKIN WEEK FOR WHAT SEEMS LIKE AN ETERNITY.
4.  I hate swallowing them
5.  I hate the sound of the ringer on my cell phone that reminds me every day at 9:00am and 9:00pm to take one of my meds.
6.  I hate that I have to have blood drawn at precisely 8:30pm every Monday morning in order to check the levels of these shit drugs coursing through my body.
7.  I hated the girl who was taking my blood, but thanks to a little phone call to her supervisor, I might have at least remedied THAT one (oh, don't feel sorry for her...her bedside/chairside attitude left MUCH to be desired). 
8.  My chubby body.
9.  Chipmunk cheeks
10.  The fact that I am turning into a werewolf (I fondly, but with some humor, call myself a Wolfmunk, or a Chipwolf...take your pick...)
11.  the fact that I have no idea when this is going to go away...
12.  the amount of work I have to put in to make it go away...
13.  the sheer EXHAUSTION I feel more often than not from weaning off of the prednisone
14.  the guilt I feel for taking a day off to regroup
15.  blister packs  (seriously..it's no fun after the 10th pill...my fingers are KILLING me)
16.  CVS (or rather most of the people that work at the one I frequent)
17.  Anthem for making it perfectly impossible to see if I'm getting ripped off (but I'm pretty sure I am somewhere along the way)
18.  myself for not putting more into an FSA...already blew through our $2700, and it's not the end of March yet :(
19.  The tingling feeling that is ever present in the back of my neck (if anyone has ever been to a chiropracter and had those electrical stimulation pads after a treatment, then you can imagine what feeling I'm talking about, only it's like they've got the electrical pulses turned up too high.
20.  The fact that some days I can't hold a pen and sign my name because my hands are shaking too bad.
21.  The fact that I can't find sunglasses/glasses to fit my face.
22.  The fact that my current glasses squeeze my head and give me a headache.

Yeah, that about sums it up right now.  I'm just pissy.

Oh my word....I'm tired

This week has been hell, workwise. I'm totally regretting staying home on Monday (even though I would've been WORTHLESS) because I could've used an extra day to get everything done. I've been working on a change control at work that was originally implemented during Christmas, but due to lack of appropriate requirements, had to be fixed. To make a long story short, I've already worked my 40 hours by this morning. Hopefully, I'm in a good place for tomorrow morning to start testing, because this MUST be completed tomorrow.

And I started the cyclosporine on Sunday....no creepy side effects yet...keeping my fingers crossed...

I've been pretty good about working out (except this week...it's been shot to hell). Joacim's been great about taking care of Izzy and getting her dinner while I work out when I get home from work. It's not a easy system, and everything feels so hectic, but it's so important for me to lose this weight, and if I don't put myself first in this regards, who will? I can't keep complaining about feeling crappy if I'm not doing anything about it, right? And I'm really starting to enjoy it! I sweat profusely (partly due to the steroids) but I feel sooo good when I'm done. And I'm doing a lot of different things so as not to get bored: 30-day shred with Jillian Michaels, Tae-bo with Billy Blanks, yoga and my pilates reformer. I've lost a couple of pounds since last week. Seems discouraging when I consider how hard I feel I'm working out, but I know this is something that's going to take some time. As everyone says...it takes time to put the weight on, and it'll take time to get the weight off. I also signed-up with Livestrong.com, and they have an iPhone app where you can track your food and fitness. It's been pretty eye-opening to see how many calories I eat in a day, and it totally motivates me to work out based on how much I've eaten in the day. Lovin' it so far!

Okay, enough rambling...I'm going to bed. Night!

Kidney Biopsy

I had my 2nd kidney biopsy yesterday morning. The first one I had was almost exactly 4 years ago. I had the biopsy a few days before we flew to Sweden for Christmas...BIG MISTAKE THAT WAS!!! It was VERY painful the last time, and I had a lot of bleeding, so I was expecting something similar this time.

Thankfully, for the most part I've been wrong. Could be because I'm on the steroids now, and they have a pain-numbing effect...could be because I had a baby and now a little kidney biopsy seems like a walk in the park. Who knows? Whatever the reason, I'm glad for it!
Ok, funny enough, this damn IV was the most painful thing of all. Now I've been poked with hundreds of needles these past few years because of this kidney thing, but this is only my 2nd IV. I never had one with Izzy, and the one they gave me for the last kidney biopsy ended up in the crook of my elbow because they couldn't get it in anywhere else. Luckily the nurse was able to get it in on the first shot, but it still hurt like hell. All day. All night.

This is how Joacim passed the time. We were there at 8:00am, but my biopsy wasn't scheduled until 10:00. They do some bloodwork as soon as the get the IV in, and they have to wait for the results as well, so there was a lot of waiting that morning.

I am patiently waiting, but all I can think about is breakfast, and the fact that I haven't had any at this point.

This is the room that they actuallly perform the biopsy in. It was a hub of activity with no less than 5 people running around prepping everything. There was a wonderful person named Alex who gave me delightful drugs. They give you a topical, then a local, and then a decent sedative during the procedure. I remember being awake and hearing the click of the biopsy needle as it sampled, but not much else. I didn't feel a thing...

Torturously, I still had to wait another hour after the biopsy was over to eat, so I kept drinking water, trying to pretend. when I was finally able to eat, I swear it was the best turkey sandwich I had ever had :)

I had to lay on my aide during the time on a rolled-up towel to stop any bleeding that might be happening. Lucky for me, there wasn't any.

I finally got up to my room around 1:30pm. As you can see, Joacinm was kind enough to bring me some yummy Starbucks to tide me over till dinner. I was all set, and clearly a vision of beauty :)

This was my dinner, which actually wasn't that bad. Chicken caesar salad....I decided on this because Joacim couldn't bring Izzy to the hospital...no children under 15 allowed :(

And this is what the biopsy site looks like. Not much, eh? amazing how painful this was last time...

And my friends at work were so sweet and sent me flowers!!!! Thanks to you all!!!

I checked out around 9:30 this morning, ran a couple of errands with Joacim, and then spent the rest of the day on the sofa. And I was soo excited when Izzy got home. I WISH I would've had my video going! Joacim opened the door, she looked inside and saw me and tripped over the entryway. But instead of getting up and crying she crawled as fast as her little legs would take her to me...panting the entire time. BIG HUGS AND KISSES FOR ME!!! Ahh....felt good. Granted, she's not really understanding the weight restriction I have (5 lbs for the next 5-7 days), but as lobng as Joacim's standing and I'm sitting, it works. Otherwise, all I hear is "up...up...up...up" relentlessly :)

Hopefully tomorrow I feel even better. Laying down so much makes me a bit woozy, so I hope to get up and about more tomorrow. Thanks for all your thoughts and prayers and help during this time! It's meant a lot. I should know some preliminary results next week, but if not, then definitely during the week between Christmas and New Year's. keep your fingers crossed for good news!!!

Some good news!!!

My intermittent leave at work finally got approved!!! Now you may be asking "What's the intermittent leave for?" Well, I wanted to have it as an option for this whole kidney thing. The last time I went through this, I pushed through, even on the most miserable of days, but I just kept making everything worse. This time I wasn't going to do that. There are days when I just can't or shouldn't go to work...I'm not doing anyone any good there, so this leave provides me the protected absence.

I've been working on this since August 24th. It normally doesn't take this long, but there was a lot of back and forth with my doctor and the case manager at work, and logistically it was a nightmare. I can't tell you what an enormous load was lifted off of my shoulders today. I needed this. I needed to know that I worked for a company that cared about me, and I feel that I got that today, so I'm very very thankful.

Steroid update

So, I haven't posted very much at all about my kidney issue and the steroids, mainly because there wasn't much to tell. It started off complete different than my previous round of steroids. I wasn't swelling up or going crazy. Was it because of all of the preparation I did before I started? What was the difference. I didn't have any answers, but I was cautiously optimistic that I would escape the awful side effects this time. Unfortunately, that doesn't seem to be the case.

Since we got back from our Chicago vacation, I can see a drastic difference. I can tell because my clothes no longer fit very well. My bras feel like corsets...very very tight corsets. The sheer amount of fat around my torso and neck feels like a 20 pound wet towel that I can't take off.

I'm frustrated by it all, because again, it seemed to happen so fast to me. I think I might be a little delusional too :) I have more than one chin right now, and I'd like to get rid of it. The crappiest part is that the weight doesn't start to come off until I'm nearly done with the steroids, and based off of my latest labs, that ain't any time soon. I started out at 5700mg/24hrs. After 8 weeks on steroids, I'm only down to 5100mg. I have to be <500mg in order for my doctor to be comfortable to wean me. Not good news for me.

There's no light at the end of the tunnel here. I'm not seeing a lot of positive things to look forward to in regards to this. The only time I can forget about it is when I'm playing with Izzy, or when I'm doing the photographer thing..that's about it.

Work is the worst. There are some days when I feel so uncomfortable in my own skin. I wish there was a way to transport myself directly from my car to my desk, where I could remain the entire day. It's horribly uncomfortable to feel as though you can't present yourself in the manner in which you're accustomed. No one understands this. I swear, if I hear "it's not as bad as last time", or "it could be worse" or something like that, I'm going to go CRAZY!!! I know that people are trying to be helpful, but it has the complete opposite effect in my head. It's like somehow they've taken away my right to feel crappy, and it's so unfair. It's as if my emotions and feeling regarding this are not legitimate. They have NOOOO idea what it's like for me every day, waking up to see this big round face in the mirror, not being able to fit in my clothes, going to work and not being able to perform as I did before because my brain is full of cobwebs. I read this article today by a woman who was put on driving restrictions when she was on steroids (at a lower dose than me, I might add) because of disorientation. Well THAT freaked me out.

I don't know what I expect, or what the next few months are going to be like, but I think writing about it is therapeutic, even if it's just nonsensical ramblings.

Steroids - Week 1

Well, thankfully I don't have too much to report in regards to the steroids. No noticeable swelling yet, no more irritability than what's commonly considered normal for me :). The only think I DO notice is this horrible, metallic taste in my mouth, and how it's affecting everything else. I mean, I don't even like the taste of BROWNIES right now....it's a tragedy.

Starting steroids...

Well, today is the day I've been dreading. I've been dreading it so long that I don't know what it's like to not dread it. I've dreaded it since Izzy was only a few months old, because I knew I'd have to start them again after I started breastfeeding. And I HATED stopping breastfeeding, partly because I knew I'd have to go on them again. But then I decided that I was going to wait until September, no matter what. I didn't want to gain all that weight during the summer again, because that meant no more trips to the pool, and being so uncomfortable all the time. I sweat A LOT on steroids (one of the many side effects, I guess), and I just didn't want to deal with it. But, my kidney decided otherwise, and I kind of felt that I didn't have a choice anymore. Especially now that Izzyboo has entered our lives.

So, I took those bitter pills this morning (figuratively AND really). And I cried. I needed some time alone to get it out of my system. I REALLY want to wallow today, but I keep picking myself back up and trudging through, trying to forget, but already imagining what's to come. I wanted Joacim to take Izzy on a walk with Murphy this morning so I could be alone, but she had other plans, which may be a blessing in disguise, I guess. Life is going to keep going, and Izzy is going to keep needing me, so, while I'll wallow occasionally, I'll always have to remember that I gotta buck up for her.

It's back... kidney disease....

Ok, I've been meaning to write about this for awhile...just struggling with the words. Saying it makes it real, and I'm still in a bit of denial. So, my kidney disease is back. Actually, it's been back for awhile, but I was dead set on not starting the drugs until September. Unfortunately, my kidney's have other plans, and my nephrologist has decided that I shouldn't wait any longer. When the words "renal failure" are thrown out there, I stop being selfish and start paying attention.

Guess I should update/inform those of you who don't know. In September of 2005, I had a standard physical at work that indicated a high amount of protein in my urine, indicated by a simple dipstick. The nurse suggested that I tell my GP about it, which I did, and lots of peeing in jugs for 24 hours and a kidney biopsy 4 days before a flight to Sweden for Christmas, and I was diagnosed with a kidney disease. To be specific, my disease is called Minimal Change Disease, which really doesn't say much. I found a really good link the other day that helps explain it WAY better than I could....here it is

In layman's terms...my kidneys don't hold protein. A normal person loses about 150mg of protein in a 24 hour period through their kidneys. I lose more than 5000mg. Yep, that's right...LOTS OF PROTEIN. My nephrologist (kidney doctor) tried to lower the level using a type of blood pressure medication known sometimes to have an effect, but not much happened for me. So in July of 2006, I began taking steroids...prenisone, to be specific. And for those of you that haven't already figured this out...not all steroids bulk you up like a body builder. Funny how people think that someone taking steroids hasn't heard that joke a million times...even funnier that they think it's actually funny. Let me tell you..prednisone is no joking matter. There is absolutely not one single thing that is funny about it. If you think I'm joking...let's travel back in time a little...

Here's a photo of me on July 2, 2006. I believe this was 1 day after I began taking steroids. We were at the Formula 1 race with some friends that were visiting from Sweden:


Here we were at Freudenfest, which is a German festival in oldenburg, Indiana. This photo was taken 12 days later, on July 14. Notice how my face is already rounder.


Ok, here's where it gets painful for me. Here I am on August 13:


Shocking is putting it mildly, don't you think? I am in full-on chipmunk mode, don't you think? I try to make light of it, but truth is I'm scared out of my mind to take this journey again so soon.

There's a lot more than just steroids that I have to take. Prednisone is the devil, and can cause a host of other problems (high cholesterol, diabetes, osteoporosis, infection, so I have to take all of these other meds too (some of which have their own side effects...like an antibiotic that I have to take, which always causes me to get thrush)). Here's a visual:


Last time, I felt like such a victim. There's so very little information out there for people like me. Most of the time, it's children that have my disease, and there's a good chance they'll grow out of it. For me, no one knows why I got it, how I got it, or what I can do to prevent it (which is nothing, at this point). Luckily, I response very well medically to steroids (according to my nephrologist), but I have an extreme reaction physically and mentally. What you see in those pictures is one of the side effects of steroids....it's called Cushing's syndrome. Some people are lucky enough to not have these, but I seemed to have gotten them all the last time, and I'm guessing it won't be much different. I also became a diabetic for awhile...it's another side effect. Luckily it went away once I weaned off the drugs, but it's awful. Here's another link that provides some information on predinose side effects.

I feel like I'm wearing a fat suit. Like there's so much fat around my neck that it's squeezing my windpipe and I can't breathe. I wake up in a pool of sweat nightly. Most of my clothes don't fit. I can't see anything without my glasses. My brain feels like it's full of cobwebs, and conversation becomes difficult for me. I feel useless at work because I can't think complex thoughts...steroids just take it all away from me. And I'm angry...very very very angry. Ask Joacim. I'm sure he'll give you a litany of examples of my roid rage. Which is wha makes this so very scary for me. I have Izzy now....I can't let her hear me yell like I did before. I've gotta find a way to control that part so much better than I did, for me and my family.

Ok, so I've got a ridiculous amount of anxiety about this. What sucks for me is that my kidney disease causes me no outward physical problems. I don't have any swelling, or ANYTHING that would even let me know I had it in the first place if it hadn't been for that physical, so knowing that I have to take a medication as cruel as prednisone to treat something that doesn't cause me problems is really hard for me to wrap my head around. And this totally puts off even the thought of having another baby. I'm not ready, and Joacim isn't even on board with another baby, but I always have the hope that it'll happen. And it still can, but this puts it off for a minimum of a year and a half. Overall, I'll be dealing with the drugs (high dose and then weaning off) for 7-12 months, and then I'll need some time to ensure that my kidney's are functioning properly before my doctor will clear it.

So, I've begun taking some steps to be a bit more proactive than last time. I haven't started taking steroids yet, but I will in a few weeks (ironically enough, I'll probably start the same weekend as I did 3 years ago). I've started seeing a therapist to help me work through some of the issues I have with this, as well as to help Joacim "deal" with me. I've also started taking some anti-anxiety meds in order to get them in my system before I start with prednisone. I think that first pill I swallow will be the hardest thing I've ever done.

So, I'm asking for help. For some support from my friends. I started this blog when I was pregnant to let everyone know how we were doing, but it's going to be a place I go to for support to vent in the future. I thank anyone for listening....