Catching up : FSGS Sucks

I feel bad that it's been so long since the last post, but with everything that we've been going through lately, some things just had to be put on hold. I'm not promising a lot of consistency here in the near future, but I'll eventually find my groove again.

As you know, we moved to Minnesota about a month ago. I imagined I was going to have all of this time to do all of these things, and it just hasn't happened. The commute is longer, Izzy's been a bit more difficult in the evenings, sucking what little energy I have left. Most days I come home for work and ache to do nothing but lie on the sofa...trying to get the swelling to ease and restore myself a little, but it just hasn't happened.
The GREAT thing is that I had my appointment with Mayo last Monday. I have one word -AMAZING. I mean, Mayo Clinic is a machine, and I couldn't be happier that my care is now in their hands. My doctor was kind, listened, and knows that I know this disease. He gives me no guarantees, but is already willing to try things that I asked my previous neph about during the summer of 2010. He started. E on 4 new meds, which I think brings my total to 18 now. I started prograf, cell pet, Acthar gel and bactrim. I
The first 3 are immuno-suppressants, and the bactrim is used as a preventative antibiotic to help me ward off infections since the other 3 are trying to knock down my immune system. I've taken program in the past, and it gave me severe headaches, but I talked to Dr. fervenza about it and he started me off on the highest dose I could tolerate. I've also taken the bactrim before...no biggie there. I've never been on the cellcept so we'll see about it.

What I wouldn't give to have some of my girlfriends here to talk to face-to-face. I've got an AMAZING kidney support system, I mean AMAZING, but I need that face-to-face as well. My husband just seems so distant about the whole thing. I mean, it's like he made me feel bad for wincing in pain when he was giving me my first shot of this medicine. I know it's cultural, but it's not ok. I need support at home...I need empathy...I need to be shown he's concerned, and I just don't feel it. I've told Jim, tried to talk to him...not much mystery to be had there. I don't know if he's tired of hearing me talk about it (which is how it feels) and that makes me terrified of the future. Yesterday, I felt that "Mack-truck kind of tired"....the kind of tired some of my kidney friends understand. It's not sleepy tired...my arms and legs feel like they're made of lead. And in my head, I hear him being all judge-Judy because I go to bed and watch Netflix. He thinks I should go right to sleeps but I can't....I need to wind down, from work, from my daughter, from him. And it also indicates to me that he'll never understand the kind of tired I mean.

We closed on our house yesterday...a day I've been waiting for for what seems like forever. And when we got home, I wanted to lie down and rest. You'd think that the first thing I'd want to do was go to the house, but I could just have easily gone to bed...at 4:30 in the afternoon. I asked him to make me some soup because my stomach was upset ( a fairly frequent occurrence at this point) and he made me feel lazy. I got up and went to the house, which was nice because I'd never seen it at night. Izzy was beyond hyper, which is cute, unless you feel the way I felt, and then it's nothing short of exhausting.

I get home, excited to go to bed, but Izzy needed a bath, and we also had to lick out shrubbery for landscaping, which you'd think would be fun unless you suck at things like that like I do. FINALLY, I'm ready for bed...and he asks me if I've taken the dogs out. No big deal normally, but considering how I told him ALL DAY how awful I felt, you would've thought he wouldn't even ask me...that he'd just do it because he knew I wasn't ok. But no. Nothing. I get back upstairs from taking them out, and he's in bed reading. Nice.

I don't want to use this as a platform to bash my husband,...that's not the intent here. But I've got to get it out, and since I don't have a girlfriend down the street to go get coffee with yet, you poor people are gonna have to read this. This thing with my husband is comprised of 2 things: cultural (typical reserved Scandinavian) and work ( he's a manager, and he never turns that part off anymore...he's ALWAYS thinking about work) which is so very American management. It sucks. I miss my Swede who had his priorities in an order that included me at the top.