Stretched

Today has been hard.  The swelling is the worst it's been in over a year....it brings me back to those days spent at Eli Lilly with my feet propped up on my desk for fear that I wouldn't be able to walk out to my car from the swelling.  It hasn't helped much that I've been on my feet all day getting ready for the family to come home.

In the blink of an eye, those 2 weeks that were supposed to be full of bliss and relaxation are gone, and I'm neither relaxed nor full of bliss.

I'm having difficulty with the fact that this is what happens when I stop taking my diuretics.

If knees could have double chins, mine would.  There's just SO MUCH SWELLING....and it's very painful. My skin hurts, and I fear that if I don't rest with my feet WAY up that it might start to split.  This roller coaster is hard.  Less than a month ago, I was standing in my bathroom admiring my slenderness, and less than 30 days later, I'm bemoaning my potentially splitting skin.

I got to see how much my last hospital stay costs.  All I can say is that I'm VERY thankful for insurance.

I got my new medical alert bracelet today and I LOVE it.  It's MUCH less conspicuous than my bracelet and dog tag that I got from Mayo the day I went on Coumidin.

I got it from an Etsy store called Stamped Evermore in case anyone else is interested.  It's very light, and able to be bent so it fits snugly on my wrist, which is what I wanted.  I wore it all day today and only noticed it when I was writing something because I'm left handed and I wear the bracelet on my left hand.

And I got news today from a woman I met through this blog that her diagnosis of a non-kidney related illness is terminal.  She somehow ran across my blog and contacted me, and we've been messaging back and forth. At first, she didn't know what exactly WAS wrong...it was all a mystery.  But to hear this today from her has rattled me.  She had to tell her mom.  Her husband is torn up.  And her daughter asked her if she'd be alive when she's 18 (she's 8 now) and she doesn't know the answer.  And I don't know how I can help her, but I desperately want to.

This makes me think about my own mortality.  Dialysis is a treatment. Transplant is a treatment.  There is no cure, and I will not live as long as I should.  Of course people can live a long time on dialysis or with a transplanted kidney, but is that the exception or the rule?  I don't know...almost too scared to know the answer.  If I'm fortunate enough to get a transplant, will the FSGS come back right away, since it's seems to be so very tough and aggressive and resistant?  What does the next year of my life look like?  The next 5 years.  Will they be like the last 5 days, because that isn't living people.  This is awful in every single way.  I have to go to Milwaukee next week for training, which means sitting down all day (more swelling) then probably some social event in the evening, when all I want to do is lie down and put my feet up.  When I feel like this, I'm off socially....I clearly don't want to be there and have a hard time pretending.  Besides the fact that it's going to be SO FREAKING COLD NEXT WEEK that I'm not going to want to leave my lovely little boutique hotel that I get to stay in.

I'm being morbid, but it is what it is.  It's worse tonight because of the swelling and physical pain, and because of my friend's future, but it's always there....the thoughts.

I'm excited to see my family.....I've had a lot of time to myself, and I think I need some company now :)

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.