I should have been posting more but I've just had a down week... I'll start with the good news though-- I'm off Prednisone! Its been about 10 days & I'm finally starting to feel like myself again. I've been SOOO TIIIRRREEEDDDD. I had a seriously bad head ache on Sunday but haven't had any since. Like I said, the fatigue is starting to get better but I'm sleeping a lot still so that's helping. I'm still getting some joint pain. I haven't been able to loose weight yet and... my hair is still falling out. IN CHUNKS. Its noticeably thinner. Hope that stops soon or I'm going to start to have bald spots!
I did labs last Monday & finally got the results this week. They weren't super fantastic so I was kind of depressed about that. Then there was a thread going on my FSGS group talking about... well, I don't really remember what it was talking about but there is one girl who is on dialysis right now waiting for a kidney. She said he kidneys were stable for SIX YEARS before she had a baby & then she was in kidney failure 14 months after delivery. That definitely gave me pause. I'm absolutely sure she will never regret that decision because it allowed her to become a mother to a beautiful little girl. But me? I'm already a mother. What if me having a fourth child compromised my ability to take care of the three I already have? Now, that's a big WHAT IF. But its definitely something to think about as we prayerfully make our decision. In the past, I had been focused on getting stable & whether I could bring a healthy baby into this world. I hadn't really given much thought to my health afterward.
I was pretty discouraged for a few days; its such a battle between heart & head.
I spoke with Dr. R (my neph) on Thursday & he wasn't as discouraged about the results as I was. We also talked about the dangers post-pregnancy to my body & he said he's given lectures on that topic. So his homework over the next week or so is to look up some of the studies regarding that topic and send them to me & Dr. A (my MFM doc) so we can talk about them at my appointment on the 8th.
I often get impatient & want to know right now what's going to happen but I keep being reminded to be patient... things will work themselves out.
3 comments:
YAY for being off Prednisone! My hair was shedding like crazy when I decreased my dosage too, and I was convinced I'd be bald, but I'm not. It did stop eventually. :)
I read that too. Wow. Scary! Luckily (if you can call it that) my journey with this disease started when my baby was around 1 and we knew we were done. It must be a hard decision to make when your desire is to have mother children! I always had protein in my urine during my pregnancies though (and they kept an eye on it but never did any further testing) so I wonder if my journey with fsgs began sooner than we thought.
Thinking about you Alisha. My husband and I had similar tearful discussions about having/not having another baby. The saddest part is that we had been trying for a month when I got sick. My first symptoms were swollen ankles and morning sickness (neither of which I experienced with my first). I took no fewer than 8 pg tests before going to the doctor to get a call back saying "YOU ARE NOT PREG, DO NOT TRY TO GET PREG. I need you to come back in for more tests, but DO NOT GET PREG." It was like mourning the loss of a baby we never got to have...no less painful than an early term miscarriage we had a few years back. Anyway, just thinking about you. Sending hugs XXXX
Post a Comment