Down week

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.

Not for the faint of heart

Everything with the Cyclosporine is going well so far.  Haven't gotten sick.  Haven't grown super bushy eyebrows.  I might have a little more hair on my face but luckily its blond.

It's the prednisone weaning that's giving me problems.  (Wow, that's putting it mildly)  The withdrawls are ROUGH!  Going from 20mg to 10mg... I thought I was dieing.  I change doses on Wednesday.  By that Thursday night I couldn't even move.  I felt like I had the flu.  I was having head aches almost every day as well.  I can't take Advil or anything so I usually just drink a Diet Dr. Pepper for the caffeine.  But I don't like drinking soda too often.

So I emailed Dr. R & of course he was fantastic & wrote right back.  He told me to try splitting my dose; half in the morning, half in the evening.  It has REALLY helped with the head aches.  But then I was having problems going to sleep because I was taking some of the steriod at night.  So I've started taking Melatonin which has helped.

A new, fun side effect of the taper is that I'm loosing chunks of hair.   I luckily have a lot so I'm hoping it won't cause too many problems.  But I'll probably have to cut it so the regrowth isn't weird.  I guess it'll depend on how much I loose.

This Wednesday & Thursday (going from 7.5mg to 5mg) didn't go so bad.  I was tired on Wednesday but felt good on Thursday.  Thought I skipped the rough part.  No sir... it came with a vengeance yesterday.  I was so tired I napped when the kids napped.  After being asleep for a while, I could hear that the big kids were up but I literally could not wake up.  Finally I heard the baby calling for me so I got up.  But it was really hard & I could barely get him out of the crib.  I spent the next 2 hours on the couch.  I didn't have the strength to stand.  I felt a little better this morning & now I feel good.

I know I can taper slower but I feel like I'll still have some of the symptoms & it'll just prolong it.  I know I have a rough couple of weeks coming but really can't wait to be off this crap.

As far as the FSGS, I don't really know where I stand.  I think I'm spilling less protein but my test strips expired so I think they're not working right (they still say I'm spilling a lot).  I'll do my cyclo bloodwork next week.  I feel like I won't have a good grasp on how I'm doing until I'm off the pred.

So there it is... my super boring update.  But that's what's up.