Pity party #113- more to come

I'm feeling really alone today. And down. My kids have been really really hard lately. My husband works all of the time. I'm so grateful for his job and how hard he works but doing the single mom thing is wearing on me. I don't get a break.

This is the first time I've ever wished my kids weren't so close together. It's always been a lot of work but I've had 3 kids at home full time for over 2 years and have another year to go before N & A start kindergarten. They are so difficult to take anywhere. I feel like the overwhelmed mom who had one too many kids & is barely keeping her temper in check (sometimes I don't keep in in check). I don't want to be that mom.

Preschool starts next week. That'll help.

I've been feeling really crappy since going back up to 20mg. So far it hasn't helped my protein spillage & I've put on 3 lbs (in less than a week) all while working out every day and eating healthy. I'm serious- I kick butt at the gym. I work really really hard. I know it's doing something good but it's discourage when I just keep getting fatter all while eating salad.

I also just don't quite know how I'm going to have another baby. That's part of what makes me feel so alone. It's easy to say from the outside that I have 3 beautiful, healthy children. I am so blessed. It should be enough. So even my friends who understand my illness might not understand why I feel I need to have another. I just do. But it scares the crap out of me.

Alone. That's how I feel. Really really alone. And that's no one's fault. I have fantastic friends and family who listen & are supportive. It's just... Hard. This is hard. Too hard.

Cha-Cha-Changes

An update on the relapse... Things didn't improve much with going back on my BP medicine so I upped my dose to 20mg on Sunday.  I've been feeling crappy the last couple of days but hopefully will adjust soon.  I would have loved my doctor's input on it all but I am sick of calling her twice a week & never hearing her.  Last time I called & talked to her nurse to see if I could get more lab orders, she said, "Oh, Dr. B wanted to see you."  HOW WAS I SUPPOSED TO KNOW THAT?  So frustrating...

Which brings me to my exciting news: I have an appointment with a new doctor!!  I've spent hours in the last week trying to find a new doctor that has privileges at the hospital I want to deliver at when I have a baby.  Its a new hospital so no one could seem to tell me who to call.  But to make a very long story short, some helpful nurses (who don't even know me) lead me in the right direction.  My new doctor specializes in pregnancy & chronic kidney disease!  Sounds like a perfect fit!

My appointment is 2 weeks from today.  I'm super excited to go to someone who actually knows what's what.  Yay!

Sucky Labs

I got my lab results from last Tuesday.  Clearly, from the title, they didn't turn out great.  I'm now spilling over 1g of protein & my blood protein, albumin & globulin are low.  Everything else was in normal range but my Chloride was at the very tip-top of normal, whatever that means.

So I recognize that there are many many people with FSGS that would consider my protein spillage minimal. But just 2 months ago I was spilling NONE.  I was in complete remission.  So this really sucks.

And I've been feeling bad, which now makes sense.  I couldn't even get myself out of bed Sunday morning.  I've just been so fatigued.

My last ditch effort before going back on a high dose of prednisone is to go back on my ACE inhibitor.  I never said in the previous post why I went off of it... I went off because its a "black box" drug if you're pregnant, meaning it causes birth defects.  I'm not pregnant but I'd like to be in the near future.  But I have to be off of the ACE.  So even though going back on it is not the biggest deal in the world, and its far more desirable than going up on my pred, its still kind of a blow.

Another new "fun" symptom I've been having lately is knee pain.  It started last Monday after my spin class.  By tonight, they had stopped hurting but hurt again during tonight's spin class.  I'm not sure if this is because of the prednisone or because of my disease but it really pisses me off.  Exercising as much as I do is for my mental health.  Its clearly not doing anything for my physique.  I discovered my love for cycling over a year ago & if I can't do it anymore I'll really really be pissed.  Like seriously pissed.  I have struggled off & on with anxiety for almost 2 years & have been able to avoid medication because of exercise.  But that's another post...

I really am having a hard time.  I cried almost the entire spin class, which seems ridiculous, but it was a good place to do it because its too loud for anyone to hear & my tears can drip away with my sweat.

I am just in mourning.  That's the long & short of it.  I'm mourning for the death of my health.  I'm mourning for the death of some of my dreams.  My 30th birthday is on Saturday.  This is not where I wanted to be at 30.