Thursday, May 10, 2012

The bastard seems to be back : FSGS Sucks

Steroid-induced diabetes mellitus...otherwise known as type 2.

I've gotten this both times I was on prednisone, and it appears that the Acthar is producing a similar effect.  It took 5 phone calls yesterday to get it all straightened out, but I was finally able to get a new meter and correct test strips last night.  I started checking it today...I figure I'll do this for a week or so and see what's happening.

Here are my levels so far today:
before breakfast:  127
1 hour after chai:  218
2 hrs after lunch:  296
3 hrs after lunch:  282

And here's what they should be if I were any bit normal (According to the American Diabetes Association):
before breakfast: 70-130
2 hours after eating:  <180

Needless to say....I've got some work to do.  Luckily, I'm aware enough to start making changes now.  I've found a book that might be one of the first to help people that are diabetic also go gluten-free (The New Glucose Revolution Low GI Gluten-Free Eating Made Easy: The Essential Guide to the Glycemic Index and Gluten-Free Living, as several things are "out" now that I would've chosen.  Rice for example...I would've eaten it like crazy because it's gluten-free, but it's a high GI food, so I gotta be careful now.  So I guess I've got some reading to do.

Something is also happening to my voice.  Not sure what, but I've noticed a change lately in that it seems to be difficult for me to talk "loud".  Now, anyone that knows me can stop laughing.  Seriously...it's like I have laryngitis or something.  I've never had it before, and I can't clear my throat, but it's just so damn much more work to talk now.  Freaking annoying.

And I was able to give myself my injection last night....all 80 units of it.  Joacim's got a trip coming up, and I didn't want to wait until then to "try" it, so I did it last night.  Apparently he watched me from around the corner to make sure everything was ok.  It WAS a different experience giving it to myself than when he does it.  I did it in my left thigh again, and while I was actually injecting the medicine, I noticed that I seemed to enter some weird kind of "fog"....and I couldn't hear very well.  It's like I was wearing noise-cancelling headphones on, only I wasn't.  It reminded me a lot of the first time I took Humira...very similar response to that.  I'm guessing it's just the stress of doing it myself but I'll definitely be keeping an eye on it.  That's one of the reasons  I go into so much detail here sometimes.  I can't remember yesterday, let alone all of the gazillion other things I've got floating in my brain right now.

And I'm swollen.  A lot.  I sat with my feet propped up all day, and the only thing that ended up doing was making my knees hurt.  Awesome.

Tuesday, May 8, 2012

Mental Health Day : FSGS Sucks

I took a mental day today.  I needed it.  I needed a day where my husband and daughter weren't around...where I could run a bunch of errands....where I could have a complete thought (and a list) so I didn't forget anything.  And it was quiet...I didn't even turn any music on today...just me, my errands, and organizing the home.

Sadly, I overdid it.  This is a pic of my feet from last Thursday.

And here they were today at 4:00pm.  It's actually even worse now.  I can't even bend my knees because of all the water.

I think my mental health day today is going to turn into a physical health day tomorrow.  There's no way this swelling is going to go down, and I can't do much of anything.  I'm waddling like a damn duck.  My knees ache with every step.  I've gained 8 lbs since Saturday.  Awesome.

And I started taking the doubled dose of Acthar last Wednesday.  I can already tell a difference.  On Friday, I could feel how tight my bra was..my skin hurts.  The bruises all over my legs, and now my stomach.....they're just awful looking.  My face is starting to swell...my eyes are puffy.  One or two days after my injection...I get a bit feverish...my face gets really flushed (like rosacea flushed) and I just feel "off" (which would be today and tomorrow...since I got an injection last night).  My sugars are high...I checked yesterday after I hadn't eaten for a few hours, and it was 171.  Now granted, I haven't calibrated the thing in awhile, but still.  Scares me.  We were at a friend's house for dinner on Saturday, and she also has kidney disease, and I started describing the "sugar fog".  She had gestational diabetes so she knew what I meant.  It feels awful....eyes get all "gravel-ly"...throat gets tight...hard to breath....looks like there's a fog around everything, and I get a bit disoriented.

Knowing these signs, I called my new GP here to order a script for a new meter, or at least some new test strips.  Now, I really liked this doctor when I met her for the first time last Tuesday, but I'm not so sure now.    I've tried leaving messages, sending emails, and I'm not getting the response I'm used to, or desire.  I need test strips.  They signed me up for pre-diabetic counseling.  I have no test strips.  I have thrush from all of the antibiotics I'm taking, and I have no mouth-rinse.  I AM MISERABLE.

Just wanted to share (what I consider to actually be a funny) EOB from my insurance.  This is for 2 vials of Acthar, that would've lasted for 2 months.  Now this is just one month of medicine for me since the doctor doubled my dose.  Isn't this INCREDIBLE?  Today, I'm ridiculously thankful for insurance.  This is THE ONLY way I could take this medicine.

Transplant / Living Donor Info for me (edited)

I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info.  I&#...