Saturday, March 19, 2016

I'm Alright.

I'm not sure if it's by the standards of Kenny or Jo Dee, but I'm definitely alright.  My feet really do seem to be doing better, and I feel less run-down now that my blood pressure is back under control.  I still stare at my new medication and convince myself to swallow it every morning, but so long as my feet continue to feel better I'll continue to take the stupid pill. 

The next week will be busy.  On Monday I start pre-operative physical therapy for my hip. This way I'll have as much functional strength as possible going into surgery so that my recovery will be easier and faster. 

Tuesday I see a neurologist for some new perspective on my foot pain.  I'm finding myself nervous about this and arming myself with peer-reviewed studies and trying to be ready for the new medical terminology that might be thrown at me.  I've become such a professional patient.  I now know that the more I can speak a doctor's language the more seriously they will take my complaints, observations, and suggestions.

Wednesdays are always busy and this one will have a little extra oomph as The Beast has an unusual evening commitment, but Thursday ought to be a normal and relaxed Thursday.

Friday Bean has off from school and we'll bake pumpkin bread to eat instead of cake at his birthday party on Saturday.  Bean currently hates cake, which I find simultaneously endearing and bizarre. 

So we spent much of today getting ready for Bean's eighth birthday party (how is that even possible??  EIGHT???).  We made a big Pikachu and some tails for a game of Pin The Tail on the Pikachu, spray painted some ping pong balls to turn into Pokeballs, and we created some Pokemon Bingo boards.

I'm not one of those moms who really enjoys putting together a party, but Bean is one of those kids who has big ideas and will execute them with or without your help; we might as well go along with it so everyone makes it through with ten fingers and toes and little property damage.

We have also been removing wallpaper from our kitchen for the past week or so.  There are at least three - possibly four - layers of wallpaper on there.  Some of it was papered over, some of it was painted over, and some of it was behind a shelf that we decided to remove (it will go back up after we've painted.  There were 50 years of wallpaper on that wall, so we obviously took pictures.  Today we headed over to Walmart to pick up the last of the supplies we needed for party prep and stopped in at Sherwin-Williams for some color chips.

I never expected the kids to get SO excited over a paint store.  They each came home with a thick stack of paint chips that they then treated as both inspiration for their rooms and trading cards.  We're focusing on getting the downstairs painted this spring.  We need to always keep every other part of the downstairs in mind because you can see at least two other rooms from every room you are in - the colors need to flow!

Despite a decent amount of time spent standing, only my left foot hurts and it's not nearly as bad as I would expect it to be.  So.  Optimism.  I have it again. 

It will be really nice to have some projects finished and literally a fresh coat of paint on my very plain house when I'm recovering from surgery.  Let's hope I don't decide, while mostly stuck on the couch, that the colors are all terrible!

Also, thanks so much everyone for the emails and Facebook messages and texts and phone calls and invitations.  I've peered in on Facebook a couple times, but it has been good for me to remain signed out for the most part.  I don't seem to get as sucked in, and it's encouraging me to get up off the damn couch and see how my feet fare.  And that is what I feel like I really need to be doing right now.

Tuesday, March 15, 2016

So much sleep.

To try and get rid of the foot pain, I have been on a nerve drug for over a year.  The dosage was increased a few weeks ago.  Side effects include sleepiness, appetite changes, difficulty rousing in the morning (if I take the drug too late), sleeplessness/waking up very early and usually with a start (if I take it too late), and night terrors (if I skip my last dose before bed).  I also think it's impacting my word recall, but I'm not sure.

I also went off a blood pressure medication a few weeks ago, since it turns out it could be causing the foot pain. 

I traveled over the weekend, which meant eating a lot of sodium.  Because of my kidney disease, my body is particularly sensitive to sodium.  So when my blood pressure was high on Sunday I didn't worry too much.  (Ok, I worried too much.  But I tried not to.) I drowned my kidneys in water and on Monday my blood pressure was down.  But today I took it again.  I'm supposed to take it frequently so we can be sure my kidneys aren't beaten up too badly - high blood pressure can damage the kidneys, and also a spike in my blood pressure can indicate that my kidneys are in distress.  It was high again, so I waited 20 minutes and took it on the other arm.  Still high, so I called the doctor.  The receptionist asked how I felt and I had to admit that I felt like shit.  I have had a headache for three days that Tylenol put a dent in but didn't resolve, and where I was up at 5:45AM Friday and Saturday (I didn't need to be) I slept uncharacteristically late on Sunday, had trouble rousing on Monday, and wanted nothing more than to go back to bed while on the phone with her.

I also have my period and I can't get enough to eat.  And I either want a whole cake or a nice greasy burger.

So I feel a bit like a science experiment and am becoming not-opposed to adjusting my own medications.  (i.e. I wonder if reducing doses of the nerve drug is a bad idea...)

The good news is that I'm confident all this sleeping has nothing to do with depression, which I absolutely have also been struggling with over the last couple of months.  I've thought about medication for that (usually Zoloft is enough to take the edge off and get me through a rough patch), but hell if I'm going to welcome any more side effects right now.

Today I've spent time on the phone with the nephrologist's office and the orthopedic surgeon's office (about whether or not I can do the drug protocol after surgery because of my kidneys), and I spent some quality time with my calendar figuring out just how many appointments I will need rides to during the first 2 or so weeks after surgery.  My husband will take a solid two weeks off and cart me around to a post-op visit to the surgeon, physical therapy, and the lab (to pretty frequently check my kidneys).

Feet. Kidneys. Hip. Feet. Kidneys. Hip. Feet. Kidneys. Hip.

I just want everything to stop hurting, but I don't want to kill my kidneys to do it. 

And thinking about priorities and what could be making me so tired today is exhausting and costing me spoons and, well, no wonder I'm so fucking tired, right?

And with that, I am going to fill out paperwork for a neurology appointment next week and get yet more sleep!  Oof.

Monday, March 14, 2016

Managing my spoons

In order to understand this post, you need to read Spoon Theory by Christine Miserandino. 

I have known about Spoon Theory for years, but generally my chronic illness doesn't limit my spoons.  Except when pregnant, things are pretty smooth and I don't feel sick in my daily life.

But over the past 4 years I have absolutely felt sick.  I've been in a tremendous amount of pain. 

I injured my hip, had surgery, and will have surgery again in a couple months.  No, I don't regret the first surgery.  I am better off than I was.  I just hope that I can be better off still.  And by that I mean that I hope I don't have to give up traveling with my family simply because I can't sit for long periods of time.

While recovering from the first surgery, my opposite foot started to hurt.  I was in a boot for a suspected stress fracture when we moved across the country.  When we moved back, I had some new and bizarre pain and it was in both feet.

Over the past few months the foot pain has at times been unbearable and I have found myself planning my days and weeks around what I expected my feet to feel like.  Cocktail party late in the week?  I can't clean the house before it because I'll already be in too much pain.  The kids have a basketball game today?  I need to stay off my feet in case the game is running late and I need to stand outside the court.

Some mornings I woke up, put my feet on the ground, and the floor felt so hard and cruel and painful that I knew I wouldn't be able to withstand the pain of a shower (the hardness of the shower floor and there being nothing I could do to soften or angle it made showers one of the most taxing parts of my day).

I've been on a nerve drug for the pain and finally got a diagnosis.  Frustratingly, I then figured out by myself that the drugs I'm on for my kidneys might be the cause.  The timeline makes sense, assuming the initial pain really was a stress fracture.  I went on the kidney drugs as the stress fracture was healing and then this nerve pain started up because of the drugs.  Maybe.

I've been off the drugs for 2.5 weeks.  I think my feet are much better, but honestly I'm now so accustomed to being cautious about how much I'm on my feet that it's hard to say.  I put them to the test by making dinner today and I don't even have a little pain, so either the placebo effect is totally amazeballs or the drugs were the culprit.

Except.  Now I'm off the kidney drugs.  And I travelled over the weekend and ate a lot of salt.  My blood pressure was frightening yesterday, but better today after returning to my low-sodium diet and drinking a lot of water.

AND if the kidney drugs were the culprit, I'll go off the nerve drugs.  Which means night terrors.  I shit you not.  I took this drug short term in college and weaning it was very memorable.  Even now, if I accidentally skip my last dose I wake up in a panic in the middle of the night.  I never enter REM sleep.  I don't dream.  I just wake up in a panic.  Sometimes sweating.  Over and over and over.  So I have that to look forward to...I hope?

And don't forget I still have hip pain when I sit.  So I can't sit for long periods of time and I can't stand for long periods of time.  Cocktail parties are my nightmare.  Even studying for classes.  Having coffee with friends.  Sitting at the dinner table.  Painful!

I'm so tired of physical therapy and multiple doctor appointments and hurting and planning my days, weeks, months, life around what will hurt and whether it's worth it.  And I worry.  I worry about my kidney health and my heart health, which is so closely related to the kidneys.  I worry that I'm going to be in pain forever.  At what point do I accept whatever amount of pain I'm in?

And I'm impatient.  I'm waiting for my husband to be able to take two weeks off work (because I won't be able to drive and I will need to get to physical therapy, the lab for kidney tests because I'll be on drugs that can damage my kidneys, the kids need to get to activities, etc etc etc).  The delay means I will have to skip some things I'd like to be doing this summer and deciding to go ahead and do others I may really regret - like sitting all day for 5 days a few weeks after surgery...

About a week-and-a-half ago I ran out of spoons.  My husband didn't even know what I was talking about when I sobbed to him over the phone "I'M OUT OF SPOONS!  I HAVE NO MORE SPOONS!"  He was on his way to a conference and I was home alone with the kids completely out of spoons physically, mentally, and emotionally.  Between anxiety, pain, and the mentally taxing logistics of being the parent who maintains everyone's schedules, makes sure everyone is seeing the doctor and dentist when needed, who is the default sick care whose schedule get re-arranged (and oh!  I do have a schedule, and it is busy.  Someone imply to me one more time that being a stay-at-home mom is easy and I'll punch them in the nose!)...I ran out of spoons.

That night I turned into a puddle of neediness at bedtime.  I told the kids that I hurt all the time, and I have this job that is completely thankless.  I reminded them of how much they crave recognition when they've done something cool, or even just worked really hard at something.  And most of what I do is basically invisible.  I work hard to get a meal on the table - feet on fire - and I'm often met with complaints.

Both boys cried with me, hugged me, and told me how much they love me.  Bean wrote me a note telling me how good I am at being a mom.

In an effort to take care of myself, quell my mounting anxiety (you guys - TRUMP????), and force myself into some reflection and meditation, I'm signing out of Facebook for a little while starting tomorrow.  I'm not sure for how long.  But I need to make sure that I guard my spoons and consciously choose what to use them for, because running out of them was seriously ugly. 

If you want to reach me, please email me at contentedlycrunchy at gmail dot com.  If you have my phone number (or my other email address), those are also great ways to reach me.

See me regularly and didn't know I was in so much pain almost all the time?  That's because I'm a Spoonie.

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