Stretched

Today has been hard.  The swelling is the worst it's been in over a year....it brings me back to those days spent at Eli Lilly with my feet propped up on my desk for fear that I wouldn't be able to walk out to my car from the swelling.  It hasn't helped much that I've been on my feet all day getting ready for the family to come home.

In the blink of an eye, those 2 weeks that were supposed to be full of bliss and relaxation are gone, and I'm neither relaxed nor full of bliss.

I'm having difficulty with the fact that this is what happens when I stop taking my diuretics.

If knees could have double chins, mine would.  There's just SO MUCH SWELLING....and it's very painful. My skin hurts, and I fear that if I don't rest with my feet WAY up that it might start to split.  This roller coaster is hard.  Less than a month ago, I was standing in my bathroom admiring my slenderness, and less than 30 days later, I'm bemoaning my potentially splitting skin.

I got to see how much my last hospital stay costs.  All I can say is that I'm VERY thankful for insurance.

I got my new medical alert bracelet today and I LOVE it.  It's MUCH less conspicuous than my bracelet and dog tag that I got from Mayo the day I went on Coumidin.

I got it from an Etsy store called Stamped Evermore in case anyone else is interested.  It's very light, and able to be bent so it fits snugly on my wrist, which is what I wanted.  I wore it all day today and only noticed it when I was writing something because I'm left handed and I wear the bracelet on my left hand.

And I got news today from a woman I met through this blog that her diagnosis of a non-kidney related illness is terminal.  She somehow ran across my blog and contacted me, and we've been messaging back and forth. At first, she didn't know what exactly WAS wrong...it was all a mystery.  But to hear this today from her has rattled me.  She had to tell her mom.  Her husband is torn up.  And her daughter asked her if she'd be alive when she's 18 (she's 8 now) and she doesn't know the answer.  And I don't know how I can help her, but I desperately want to.

This makes me think about my own mortality.  Dialysis is a treatment. Transplant is a treatment.  There is no cure, and I will not live as long as I should.  Of course people can live a long time on dialysis or with a transplanted kidney, but is that the exception or the rule?  I don't know...almost too scared to know the answer.  If I'm fortunate enough to get a transplant, will the FSGS come back right away, since it's seems to be so very tough and aggressive and resistant?  What does the next year of my life look like?  The next 5 years.  Will they be like the last 5 days, because that isn't living people.  This is awful in every single way.  I have to go to Milwaukee next week for training, which means sitting down all day (more swelling) then probably some social event in the evening, when all I want to do is lie down and put my feet up.  When I feel like this, I'm off socially....I clearly don't want to be there and have a hard time pretending.  Besides the fact that it's going to be SO FREAKING COLD NEXT WEEK that I'm not going to want to leave my lovely little boutique hotel that I get to stay in.

I'm being morbid, but it is what it is.  It's worse tonight because of the swelling and physical pain, and because of my friend's future, but it's always there....the thoughts.

I'm excited to see my family.....I've had a lot of time to myself, and I think I need some company now :)

It SUCKS. It SUCKS. It REALLY REALLY sucks.

I was just talking to my friend, Emily, asking her if this is the bottom yet.  Seriously....gaining all this weight so fast hurts, both physically and emotionally.

My clothes don't fit.  My boots don't fit.  My legs go numb because my socks cut off the circulation.  I'm having a hard tie breathing.  My hips and knees ache because of the added weight.

I'm pissed.  My heart and mind want to do yoga, but my damn belly is in the way and I can hardly bend my knees and ankles.

I broke down and popped my diuretic pills as soon as I got home.  Experiment over.  I'm anxious to see how long it'll take for this to ease up.  And I'm tired of looking pregnant.

Hey! Looks like I found another word to describe how I feel. I'm doing a little experiment here....I've stopped taking my diuretics for a couple of days now, just to see how bad it would get. All I can say is "ouch".

I have a water baby. And it's spreading to my lower back. Yuck! I'm still on my salt binge, which isn't helping, but that craving appears to be tapering now. I'm trying some weird water thing that I read about to see if that does anything, and I'll be paying attention to my salt intake over the next few days so we'll see what happens.

Also, if you could say a little prayer for my friend, Macy Grace! That'd be great. This little FSGS hero of mine is in the PICU tonight so doctors can monitor her mysterious illness more closely.

Location:Chubby

Blahhhhhhhhhhhh

That's the only word to describe how I feel.  Oh, and jiggly....yes, feeling VERY jiggly.

This is frustrating.  Beyond frustrating.  To have gotten down to my goal weight, and then, within a couple of weeks to be right back where I hate to be is the most aggravating thing.  Sure, food tastes better, so I eat more, and I expected to gain a little weight back.  But this is ridiculous.

But looking at my ankles today as I was doing yoga (yep, got it 45 minutes!) I saw the swelling on my ankles, and the roundness of my belly is back, indicating severe water retention.  This is no surprise, and partially my fault as I've been binging like crazy on salty things.

My appetite/cravings are powerful right now.  It's not like I'm bored.  I'm probably not getting enough sleep which could account for some of it, but I almost ALWAYS feel that hungry feeling in my stomach, and it's almost ALWAYS growling at me.

UGGGGGGGGGGGHHHHH!

This is the way it is, I know, but I'll never stop bitching about it.  I just met with a new PCP whom I really liked, so that's great.  I'm also getting in to see Dr. Lee at Minnesota Kidney Specialists in March, so that's something to look forward to.  My hope with them is not for another form of oral/injectable treatment, but a 1 and 5 year plan.  I NEED to know what the future might look like for me and my family.  It's of paramount importance for my sanity, and as m y sanity gets challenged, so does my health.

I feel like I need some sort of detox diet or something...just to clean me out and start over, but it's not as simple as looking up something and trying it out.  I wish it were because I would, but I'd fear doing more harm to my kidneys without enough knowledge, so next on my list is a renal nutritionist.

Can anyone in the Minnesota area recommend one?