Living by the numbers....

I feel like I'm letting "numbers" dictate my life right now.  Between the scale and my blood pressure cuff, I feel like numbers dictate everything about my day.  More specifically, it's affecting how I feel physically.  I may be having a good day, but then I'll step on the scale to see how the diuretics are working, and when I see that I've continued to gain weight, I freak out.  That makes me want to take more diuretics, which are inherently bad for my new bean.  And then I start to feel like I'm drowning in fluid, even though I felt find 5 minutes before.

I swear, all of this shit is really starting to mess with my head and I need to figure out how to get in front of it because I'm sick to death of reacting.

The weight really bothers me, I can't lie.  I think I should be lighter than I am because of all of the muscle tone that I lost after surgery.  And I also only eat half as much as I used to, so I don't understand why my weight is nearly the same or a little more.  I know that I'm retaining fluid, but it feel like it's set up residence in my torso lately and it's uncomfortable.  I've spent a lot of time this weekend lying on the sofa with my heating pad because it's unbelievably cold here in Minnesota right now, and it feels like I feel worse the longer I sit here.  Once I get up and move around, I feel a LOT less pressure in my chest and lungs.  But at the same time, I've been sitting a lot trying to keep my legs up to prevent swelling in my lower legs.  It's gotten a lot better since we switched up the amlodipine (blood pressure med) on Friday, only taking it in the evenings now as opposed to mornings and evenings.  That's made a HUGE difference in my ankle swelling.

With all of the protein I'm still spilling (which is certainly less than it was but not as little as we'd like) I'm bound to have some swelling, but it's hard for me to deal with any of it.  My expectations after transplant are to have a normal life.  No one goes into a transplant thinking about all of the sacrifices they'll have to make, or the substandard parts of their life.  I sure as hell didn't.  I don't want to be a whiner, but my expectations after transplant are to live a completely normal life (except for all of the meds....I can deal with those), but I don't want to have to watch how much potassium or phosphorus I consume, and I don't want to have to freak out about salt because I'll retain fluid.  I just want to live like a freakin' normal person.

Since we stopped the amlodipine, my swelling in my legs/ankles has gone down, but my blood pressure has gone up, which I'm sure will make my numbers shitting tomorrow when I go to Mayo.  I can't get into plasmapheresis until 1:30pm any day this week which makes for long days when you have to get blood work (which has to be done by 8:30am).  Luckily, tomorrow I only have urine labs, and I can do those at any time, so I won't have to drive at 5:30am!!!

I was talking to my doctor last Friday, and mentioning that both Izzy and Joacim were showing signs of getting a cold, and he then wanted to do an IVIG infusion (bleh), but with plasmapheresis being so late, I'm not sure how we're going to fit it in, so I have absolutely no idea what I'll be doing this coming week except for tomorrow.  The rest is totally up in the air.

Right at this moment, I'm just not feeling great.  I can tell when my blood pressure is high, and I can feel every kilo of weight that's extra.  It makes every breath noticeable, and a constant reminder that I'm still not OK, and that there's still not an end in sight.  I wish I could go a whole week without having to check my weight or blood pressure....to see if it would change how I feel physically.  I mean, I wonder how much of this is in my head and how much is real.  I honestly can't tell anymore.  And what's in my head can be manifesting physically too, so I don't know if I'm ever going to know.