Abatacept update and another diagnosis code!

Lately, I just haven't felt like writing.  Hell, I haven't felt like doing much of anything.  I had a BIG case of that utter exhaustion that pops up every now and then.  Luckily, I got a new PCP that identified the problem....hypothyroidism!  I went in for a physical a few weeks before Christmas and she decided to check my levels.  I'm actually not even sure what prompted her to do it, but I'm glad she did!  Let's look at the symptoms of hypothyroidism, shall we?  According to Mayo Clinic's website, hypothyroidism signs and symptoms may include:

• Fatigue
• Increased sensitivity to cold
• Constipation
• Dry skin
• Unexplained weight gain
• Puffy face
• Hoarseness
• Muscle weakness
• Elevated blood cholesterol level
• Muscle aches, tenderness and stiffness
• Pain, stiffness or swelling in your joints
• Heavier than normal or irregular menstrual periods
• Thinning hair
• Slowed heart rate
• Depression
• Impaired memory

Well, that about sums up every thing I've been feeling.  Hell, if I hadn't already had 2 kidney biopsies confirming my FSGS diagnosis, I'd say it was ALL hypothyroidism.  Sadly, I'm not that lucky, but I AM lucky enough to finally be on some medicine, and I think it's really working.  I mean, it's only 5 days in, but I definitely have more energy, and I can feel the fog lifting from my brain..I'm quicker, wittier (okay, that may be debatable, but I think I'm pretty funny via text messages) and just generally all around happier.  I'll go back in 6 weeks to get my levels checked again, so keep your fingers crossed for me, okay?

Someone anonymous posted a comment on this blog a couple of days ago asking me to update everyone on the abatacept infusions, so that's really what prompted this post.  Whoever you are, thank you for getting me in gear writing again!

Okay, so I've had a total of 3 infusions so far.  I did these on Day 1, Day 15 and Day 30.  From now on, I'll be going to Mayo once per month to do them, assuming the drug works/continues working.

Sometimes I don't feel so well after the infusions.  I do notice some nausea, most noticeably in the mornings.  I have some zofran left over from a hospital stay and I take that, and that's a HUGE help.

Sometimes my face gets really PUFFY.  This picture was taken the same day as my last post was written, and if you read that one, you'll know that it was a REALLY bad day.

I honestly don't know if the drug is working.  My pee is still ridiculously foamy.  That being said, even if I had a 50% reduction in my protein loss, I still lose a shitload of protein, so I probably wouldn't notice a difference anyway.  I'm not going to lose hope, and I'm not going to spend a single second wondering if it's working.  If it does, SUPER!  If it doesn't, then I'm no worse off today than I was before I started taking it, right?

There are a few weird things that are going on, but I don't attribute these to the abatacept at all.  This is just a result of the awful things that FSGS does to my body.  Case in point:

This is my fingernail.  Gross, right?  Yeah, I think so too, and now some of them GROW OUT THIS WAY.  I've got 4 nails right now that are growing out with what appears to be bruises...they look like the kind of bruise you get when you shut your finger in a door, only I haven't done that (I mean, I'd remember THAT!).  I'm blaming this one on the nutritional deficiency that is occurring due to the protein loss.

I also get weird rashes that are unexplainable, incredibly itchy, and totally gone the next day:

This month, I think I'm seeing a total of 4 doctors, if you include my dentist (which I do).  I FINALLY was able to get an appointment scheduled with an orthopedic surgeon to check out my left hip that I had MRI'd at Mayo this past summer.  My hip has been feeling pretty good, but in preparation for the appointment, I started on the elliptical machine again, hoping I can aggravate it enough.  I know this seems counterintuitive, but I've been to so many doctors for things that are bad when I feel good that they don't pay the same level of attention, so I want this thing to HURT so he understands how bad it can be, and how much it affects me.  Initially the doctor looked at the radiology report and told the nurse that nothing needed to be done.  Thankfully, I'm nothing if not persistent, and told them that someone was going to see me because it hurts like hell and I wanted to start running again.  Wish granted :)

Okay, I really hope that captures the last month or so.  My wrist hurts from typing, so I'm outta here :)

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.

FINALLY...a normal day : FSGS Sucks

As you recall....the beginning of last week S.U.C.K.E.D for me.  Unfortunately, it ended in pretty much the same way.  I went to get my hair done Wednesday night (yippee), but as I sat there, I got THE WORST sore throat and ear aches that I've ever had...no seriously..THE WORST.

I got home..cried about how tired I was of feeling like shit, and then went to bed.  I woke up feeling pretty much the same way, so I tried to go to the minute clinic at my CVS (since I don't have a doctor here yet), and they told me they couldn't see me because I was on immunosuppressive therapy.  Awesome.  So they recommended me to the nearby Urgent Care.  Let me just throw this out there that Urgent Care is such a moronic term.  There's nothing "urgent" about it...it took 2 hours..but they FINALLY gave me an antibiotic because my WBC was up, clearly indicating an infection of some sort, but thankfully my body is still able to try to fight it.

I had to take an hour-long drive after that for work...couldn't get out of it, and then back home again, and I was DONE.  Laid on the sofa with Izzy and watched a movie.  Friday night was pretty much the same way, except I woke up with my eyes swollen, but my left eye was really bad as you can see below.

And it just kept getting worse and worse throughout the day.  I swear I go from chronic dry eye to chronic weepy eye in a heartbeat.  And my skin around my eye got really red and irritated and dry.  Btw....the headband..yeah, that's Izzy's idea.  She was doing Mamma's hair :)

But then on Saturday I woke up and it was HORRIBLE.  Okay, horrible may be a relative term, but who the hell cares...it's MY FACE.  Lying down was the worst thing I could've done for the swelling.  And I KNEW at that point that the infection was a sinus infection, because my eye sockets...hell, my whole face hurt.  

And then I started crying again because we had a party to go to that evening.  And for me, well, I just didn't want to go looking like a freak of nature.  I don't want people to look at me in that way...and I'm tired of being sick.  I'm tired of feeling as awful as I do, yet having to "put on a happy face".   Luckily, gravity helped my face (but not my ankles, so I wore jeans) and I went to the party.  I had fun, but didn't feel like myself.  I was so worried about what I was eating, thinking it was going to trigger some crazy other side effect (I've had hella awful heartburn lately).  And I had a glass of sangria, then some water, and then ventured to hot tea (wooohoooo!  living large at the party while everyone else is getting drunk off of yummy wine and beer :)   Fuck...I'm just tired of it.

So tired that I took up my friend Julie's advice and called a holistic kidney doctor on the east coast.  I sent her my labs, completed a questionnaire, and then spent an hour on the phone with her yesterday going over her recommendations.  Surprisingly, everything was reasonable (except no cheese....it's a sad sad world if there's no cheese in it).  And one of the things she DID recommend was taking a 20 minute salt bath every other day.  Now THIS is a prescription that I can easily follow.  It's essentially creating reverse osmosis through my skin to the bathwater to draw out the toxins, and I think it actually sucked out some of the edema today as well, because I can see BONES IN MY FEET!!  Check out these beautiful bony feet!!!!

I've been a bad, bad patient with my meds.  After last week, I stopped taking the Cellcept completely.  I forgot my Acthar dose on Saturday.  I didn't start taking ANY meds (except for the amoxicillin for the sinus infection) again until Sunday night, and I think the break has done me a bit of good...a bit of perspective at least.