Snuck in again
you tricky fiend?
Grabbed her hands
promises with every
swallow of wine
and outright lies upon
every glimpse in
the mirror, every
swallow of food.
You may be manipulating'
quite a few parts,
yet you do
not have the most
For that is held
in fire and steel,
and guarded by
will never beat.
I think I'm moving into that acceptance mode where this isn't just something that is a week-long annoyance. This is something that is actually a part of my life. At least for the time being.
So I have no choice but to try, do I?
I need a plan. Right now my plan is to continue to deal with all of this with as much grace and dignity as I can. I am certainly not the first nor the only person that has dealt with peripheral neuropathy before.
So why has it been so difficult for me to bring myself up out of the hole of hopelessness this time?
I think this particular battle has turned scarier for me than the others. First off, the ED and the alcohol have both been things I have been fighting on and off for almost two decades. I didn't hone my attack skills against them until this past summer, but at least I was somewhat familiar with the enemy and I knew what I was going up against before I even started.
This time I'm going in blind.
I literally know nothing about what is hurting me. We haven't yet figured out what is causing the neuropathy to occur, and it is still progressing. I have lost the ability to feel sharp sensations from the knee down, and I have lost the ability to feel cold sensations on the balls of my feet. My hands are beginning to go numb on and off throughout the day and it is scaring the shit out of me. Until the doctors can find the cause, they can't stop it from going any further. (If that is even going to be an option.)
All of these "if's" are making me want to scream my head off.
So I need to channel it into something productive. I need to stop ignoring what is going on and I need to start paying attention to the information I am learning about this invisible enemy and using it to slow down this process as much as I can.
I way overdid it on Christmas.
I insisted on playing Santa. I not only helped with the wrapping of the tons of presents, which involved going up and down the stairs multiple, multiple times, but then I was also the one to wake up at 4:00am and do those trips all over again to get the presents into their stockings and under the tree. I went back downstairs to rummage through boxes to find the right lights for our "tree" (i.e. shrub) because my daughter was upset that we hadn't put any up at all this year with everything going on. It took me an hour and a half to get everything done and I paid for it on Christmas night. I was literally laying on the couch on the verge of tears because my nerve pain was SO BAD that I didn't know what to do. I was out of hope and patience and I just wanted this to stop.
But here's the thing. It's not going to "just stop." So I need to keep going.
I NEED TO TRY.
That's my plan of action. I'm learning from my mistakes and not repeating them again. I'm doing what I can to keep my body as healthy and strong as it can be to fight this thing as hard as it can without being able to see it, or LABEL it.
In other words, I'm fighting this sucker like a BADASS NINJA.
I like wording it like that. It sounds more fun. It sound more like the old B. The B before my toes started tingling on November 30th. I need to remember that I am still the same person. I can still fight just as hard. I just need to do it a little differently.
You haven't gotten my brain yet, f*cker.
I still have the most important parts. And that's all I need to keep getting everything I need out of life and giving everything back that I can. I can still enjoy my family, I can still enjoy the sun....I can still enjoy just being.
And I can still share my happies.
Once again, I've clawed my way back up. What is this? Time number 1,452? I lost count a very long time ago. I also learned a long time ago that it doesn't matter how many times you end up in that dark place. As long as you find your way back out, that's all that means anything. Everything else is just dirt. (Little reference to the ol' "Glitter and Dirt" wrap ups for my peeps! Woop woop!)
So, I'm back. Did I miss anything? Have the aliens taken over yet?? Fill me in please. I've been gone a while this time.
I really, really appreciate you all. XOXO
I am so fucking upset.
(If you are allowing children to read, you should probably stop that right now.)
So, I went to see another neurologist today. My original neurologist (Dr. M) sent me to see the second neurologist (Dr. F) because he couldn't figure out what was wrong, and this guy had an opening pretty quickly. Come to find out, that opening was for emergency need patients (sneaky, sneaky Dr. M! High five!) and this doctor was super confused as to why a fellow neuro doc sent me to him.
Side comment: If one more doctor looks at me and says "But why did they refer you to me?" I am going to throw their stethoscope across the room.
This guy got over his initial confusion and did his own workup, and WOULDN'T YOU KNOW WE HAVE SOME NEW FINDINGS??? I've got sensory loss from my knees down, people. It "may or may not come back." He took his little painful pin and stabbed me in my thigh, which hurt kind of like a tiny bitch (but I won't say that because that would be very not-Marine of me) and then he stabbed me in the knee...same stabby pain. Then he stabbed my calf. Or so he says. I wasn't really looking, but it certainly didn't feel like he stabbed me. It actually felt like my calf had been numbed in a bucket of ice water for half an hour before he stabbed me, because I barely felt anything. WHICH DOES NOT MAKE SENSE BECAUSE MY FEET AND LEGS STILL HURT LIKE A MOTHER F*ER SO HOW ARE THEY NUMB?!!! (The answer is peripheral neuropathy. Here is the Wikipedia page to give you the definition for anyone who wants to read up.)
Moving onto the part that makes me want to face-punch someone (don't worry, I am going to do a shit-ton of origami instead once I am done blogging about my woes.).....
This doc decides that my peripheral neuropathy might be caused by the fact that I am on Antabuse. You want to know why? Because he read an article like 3 decades ago and it "just popped up in the back of his brain" when he thought of a young woman with PN.
Can I just interrupt myself here and say that I Googled (Bing.com'd) that shit myself and found the study he was referring to from 1982 and it is an EXTREMELY rare side effect, and also, they weren't even sure if that was the cause of the girl's PN at all.
So, you know, let's just take B off of the med that ensures her sobriety and gives her the sense of security that she won't fuck up and jump head first off the wagon at the first sign of booze because 30 years ago some girl had similar symptoms and happened to be on the same medication. Awesome.
Also, because he is a doctor and obviously cannot put all of his eggs in the same basket, we are running a bunch of tests to make sure my husband isn't secretly poisoning me.
Merry Christmas and Happy Holidays and all that.
I've been doing so well with the ED lately. This is my first lapse in months.
I think I had one slip-up where it was a blip on my radar, but nothing like this. I will spare you all the details, partially because it would be insanely triggering to my fellow ED strugglers, and partially because I just can't bring myself to go through it word-for-word yet. I literally have been doing amazeballs when it comes to the bulimia.
YES I used the word. So fucking sue me. I am a bulimic. Occasionally I may throw out that term in my writings.
Moving on. I feel disgusting. I cannot describe how far down I feel I've fallen. Logically I know that it was a lapse. It was ONE LAPSE. I did all of the right things after. I told everyone every ounce of truth. So why don't I feel better?
Because it still happened.
I guess I need to try to practice that self-compassion thing. It's easier said than done. Right now I'm giving myself a hundred invisible lashes and degrading myself in as many other ways I can think of. But what good does all of this do? It will not build up my strength to fight against ED the next time he creeps in. It will not help me to board up all of those cracks and secret holes he may find his way through next. I need to prepare myself for next time. Because there will be a next time. I will be tempted again. This disease does not go away. You just get better at fighting it because you build up your arsenal of tools.
Today my guard was down.
I'm not going to use any excuses. I did what I did and it's done with. I fucked up. Now I have to rebuild all of that trust I had in myself, and that my husband had in me. And the pride that went with that. The high-fives from my treatment team for doing so goddamn well. All of that good stuff. I've got to start over. And I will.
You bet your ass I won't let this be the end of everything I worked for.
I will take every little bit of shame and indignity and hurt and guilt that I am feeling and I will mold it into something that can be used as a shield against future attacks from ED. I certainly won't be cowering in a corner and I damn sure won't be throwing in the towel and giving up my family and my life just so that I can go frolic with ED and die a quick and not-so-painless death.
I'm being real. So should you, if you're struggling.
This shit can't be messed around with. The second you realize you don't have a handle on it, you need to reach out. There are so many people that can help you, and so many people that are going through the same thing. Don't just let ED abuse you. You can get away. There is a better life out there. I promise. Just look at me; I'm all pissed off at messing up ONCE in a matter of 4 or 5 months! You can do it too. Take the leap. Make the call. Ask for help. Stop waiting for the right time. Just go.
Nothing is more important than ensuring you get to breathe your next breath.
Good luck, my friends.
Don't be fooled by the title - I'm pretty FUCKING ENRAGED right now.
I know, I KNOW, that I have always said that I'm a super-strong person. It takes a hell of a lot to knock me down, and I'm just talking to one knee. These past 7 months have managed to sucker-punch me, knee me in the gut, get some good kidney punches in, and then stomp on my grape until someone (thanks to whoever that was, by the way) pulled them off.
Let's just rewind back to yesterday, shall we?
I was all, things are looking up! The brain fog is clearing, my feet are starting to do what I ask them to do, and the worst thing about the latest possible diagnosis is that I might have to subsist on a shit-ton of leafy green vegetables. Shudder.
Fast forward to 3pm today when my neurologist called me.
Here's the gist of the conversation:
Dr. M: "Hi B, how are you feeling?"
Me: "I'm all right, what's up?"
Dr. M: "So I went ahead and scheduled that lumbar puncture for 1pm tomorrow. I hope that time works for you. I don't want you to end up having a spinal headache over Christmas or anything, you know?"
Me: PANIC PANIC PANIC PANIC "but what about the hypoparathyroidism?"
Dr. M: "I'm not convinced that's it anymore. So I'll see you at 1pm tomorrow? Just call if that time doesn't work for you. I'll see you then."
What a difference a day makes, huh?
So it looks like we're back to the other line of searching. The scarier, yuckier one. Awesome. I feel like I'm being yanked back and forth at a very fast speed and it is making me feel very, very ill.
How am I dealing with all of this, one might ask? I'M NOT!!!!!!! (That's why I'm writing right now.) Writing is one of my coping skills. I'm hoping to find some sort of divine sense of peace by getting all of this out of my head and onto a screen where I can look at it, and read it over, and just see it as a tangible thing that is OUTSIDE of me and not poisoning my innards.
I want to cry.
But I won't cry. I will keep doing what needs to be done, because I'm a mom. I will keep making sure I am eating, because I can't let ED creep back in. (His voice has been pretty damn loud lately.) I will continue to not drink because I know that alcohol would make this situation exponentially worse and I can't even deal with how bad it is looking right now.
So that's almost where I am at right now. Right on the precipice of total shutdown.
It was my son's 2nd birthday today. He had such a good day. He only got a few presents, but they were very well thought out, and he spent the entire day pushing them around the carpet and basically ignoring all of the rest of us human beings in the room. The only present he did NOT like was the one that was supposed to be his favorite. The Puppy Surprise! He has been ogling at that commercial for weeks now, so I caved and went to Toys 'r' Us and bought him one last night, and wouldn't you know it he was TERRIFIED of the damn thing?? Legit giving it like a 5 foot berth when he walked by it like it was going to jump out and bite him. He wouldn't even touch the tiny puppies. Sigh. Thank goodness for my little sister and her Bus that makes sounds and has flashing lights and things. He hasn't let that thing go since 8am.
So, here's the deal. I'm going to keep writing this part in bold because I need myself to pay really close attention right now. I need to GET MY SHIT TOGETHER and LIGHT MY FUCKING SPIRIT FIRE and figure out how I'm going to take on this beast. I don't know exactly what I'm up against yet, but I'm not going to be able to battle anything if I'm as weak as a fucking piece of kleenex. I'm giving myself 10 hours to rest and reboot. Then it's game time.
Whatever the fuck this thing is that is attacking my nervous system....do you have ANY IDEA who you are FUCKING WITH?
I'm guessing no. Oh well. You'll find out soon enough when I kick your ass back to the curb so you can go slither back down whatever hellhole you came from.
I'll be all, "Deuces, Motha fuckaaaaa!!!!"
(I get to talk like that right now because I feel really really shitty and my brain still kind of isn't working.)
Sorry for the profanities! ....Kind of!
Addendum: The two below are what push me to get up day after day. They make every single not-so-good-thing worth it. I'd do it all again in a heartbeat for my kids.
Happy 2nd birthday, Waffle.
I woke up this morning and I could FUNCTION LIKE A NORMAL HUMAN BEING!!!!
You have no idea how hard this has been over the past few weeks. Well, perhaps you do as I have been describing it in detail on this blog for you to read and understand and commiserate. The fact that my body was in intense pain that was not properly controlled was bad enough, but the idea that my brain couldn't even complete a simple task without blanking out halfway through and forgetting what the hell it was supposed to be doing in the first place was absolute hell for me. I am a very organized, fast moving person. I like to make charts on top of charts and I then I like to put them all in their own sections in my pretty three-ring binder. Since this episode started I haven't been able to do more than scribble a reminder on a post-it note, and even then I would forget what I had gotten the post-it note out for before I even had the chance to write anything down.
SO. INCREDIBLY. FRUSTRATING.
But, today, my friends. Today is a NEW DAY! My brain is clearing up, the invisible elves have run off to greener pastures and taken their stabby knives with them, and most of the shooting pains down my legs are gone. FUCKING AMAZEBALLS.
Now we are back to focusing on our normal life and our normal problems!
Wait a minute. For about 0.2 seconds there I forgot that my problems are the antonym of "normal." With the subsiding symptoms, the nausea let up, so I went into the kitchen to try to get some breakfast this morning. The usual song and dance commenced. The argument between ED and I ended up leaving me with a granola bar and a bowl of frosted flakes with whole milk and a cup of coffee before I retreated. I considered this one a win. (Warning: This part may be triggering to anyone suffering from an ED - viewer discretion advised.) While I was in the hospital, and the entire week before, I had zero appetite. The pain in my legs was all I could concentrate on, and it's hard enough on a good day for me to talk myself into eating 3 square meals. This led to a lot of worrysome and awful weightloss which was unintentional and very upsetting to myself and my husband. I look very sick. I actually looked as sick as I felt on the inside. When I look at the pictures I took of myself with my kids over the past few weeks, I can SEE the exhaustion and hopelessness and fear in my eyes. I had been doing so well with the eating and the drinking problems. My recovery was going great. Now, not only was I hit with this illusive illness that made me want to crawl into bed and scream and scream and scream until SOMEONE finally took me seriously and came up with a goddamned answer, but it was negatively impacting my hard-earned recovery.
I was SO FUCKING ANGRY.
It didn't seem fair that after an entire summer of battling two diseases that are known for being very conniving and for recurring with most patients. I had a long period of sobriety. I had a longer period of not using behaviors. This "episode" was messing with everything that I had spent my entire summer working toward. I was so tired and in so much pain that I did something that I never do.
I lost hope.
For those of you who know me, I never lose hope. I'm always there to give pep-talks and to motivate someone (or myself) when they need a kick in the ass to get going again. But this....I just couldn't do it, man. I had nothing left. I was so empty and so done. All I could think was that I was never going to be a nurse again, and that I was never going to be able to fully care for my children without someone else helping me everyday. My brain would never function the way it used to.
I wasn't B anymore. B was gone.
That's when HalloLe came in. My tribe. See, I've got these awesome friends. They are some of the best people on the planet that I have ever, ever had the pleasure of meeting. They got me through all of it. They pulled me out of this depression. They helped me out with my kids. They took care of me. They asked how I was doing, and weren't surprised or awkward when I answered sincerely. They made me laugh when I felt like shit. They gave me so many hugs. They were my medicine.
That's what tribes are for.
They sent me that. And that made everything better.
My husband and kids and family helped as well, don't get me wrong. They were awesome, too. I had a great support system through this whole thing. I am grateful for every single one of you. Thank you, from the bottom of my heart. I hope I can return the favor one day.
i woke up this morning and my invisible elves (I decided they were elves because that just goes along with the season, and why not be all "Happy Holidays", right?) had vanished! My legs still feel pretty weak and wobbly (think Bambi), but the tiny shitheads have turned-tail and moved on to their next unsuspecting victim. GOOD RIDDANCE DON'T YOU EVER DARKEN MY DOORSTEP AGAIN, YOU FIENDS!!! I don't know why talking about them makes me want to talk like I'm in an old Disney movie....
So I had my long-awaited neurology follow-up today. (THANK BEJESUS!)
First of all, let me start by informing you that I showed up to afore-mentioned appointment yesterday. Two hours early. In the wrong office (twice). Most of those things WERE NOT MY FAULT. Technically......yes, I should have known the appointment was for today. However, the wrong time was typed on my paperwork, and I was sent to the wrong office by the information desk. So today I just showed up at the time that was typed on the paperwork, and proceeded to sit in the hallway for an hour and a half waiting for someone with the keys to come open the damn office.
I shuffled down the corridor after my lovely Dr. M, who is the only doctor in this entire hellish journey who believes all of my crazy symptoms are real and that I am not some drug-seeking, melodramatic, dual diagnosis patient in crisis. (No I am NOT, Mom!) He led me into an exam room and made me sit on the table and asked me how I was doing. Then he told me to calm down about 20 times and he brought me into his office where we sat and we brainstormed some more. Luckily!! I had spent the two hours of downtime before my appointment to compile a list of all of my symptoms from my two "episodes" as I will be referring to them for the time being. I read them all for the doctor and he then grabbed my notebook from me and said, "wait, wait...see, we've been going about this all wrong! It's all about the CALCIUM!" (Did I mention how much I love my Dr. M? He not only listens to me, he mutters out loud to himself like an old mad scientist, but has the demeanor of a grandfather who spends his days doing nothing but fishing and reading his grandkids bedtime stories.)
So then, THEN!! he calls his friend in endocrinology. A woman answers. "Dr. A is not taking any new patients right now!!!!!!" she screeches. "To tell you the truth, he's ready to QUIT!"
"All right, all right now. I just need to fax over a case for him to look at -" Dr. M tries to de-escalate the poor, frazzled woman who, also, sounds like she is ready to quit.
"He is NOT taking ANY new PATIENTS." she says again, and then whispers, "You have no idea what it's been like around here the last few days!"
Guys, I'm not even joking.....you could LITERALLY hear the desperation in this woman's voice. Dr. M gave up on trying to calm her down and told her he would fax the information over.
"I'll just put it with the rest of the consults he has sitting in his box." she snapped.
Well then! Long story......shortish? "We" (Dr. M) are looking at hypoparathyroidism as the cause of the symptoms both this episode, and the episode I had back in August. Hopefully this all pans out, because if not.....we're steering back towards that lumbar-puncture-scary-ground I don't want to get near again.
I'm going to sit down and snuggle my littlest kid while I wait for the big one to get home with my husband. And then I'm going to enjoy a few moments where I DON'T feel like bawling my eyes out.
Peace out, girl scout.
Addendum: OH MY GOD I TOTALLY FORGOT WHY I TITLED MY BLOG WHAT I DID!!! (There was a reason, guys!) People with parathyroidism have to eat diets low on phosphorus - means cutting way down on meats and eggs....and high on GREEN LEAFY VEGETABLES....and broccoli and KALE!! (Those of you who have ever, ever known me in real life are laughing your asses off right now. NO I WILL NOT READ THE BOOK NOW, MOM!!!!)
Disclaimer: I am going to start this blog with a new format because everything is about to turn upside down and sideways. (I won't make you read it that way, though.) Also, please excuse any typos or any jokes or things that don't make sense. My brain twists things up now without my permission and I tend to come off looking a bit stupid. I'm not stupid, just having a "flare up."
Exactly 15 days ago, on November 30, 2015 I noticed an annoying and slightly-painful tingling feeling in both of my feet. I didn't pay too much attention to it because I was concentrating on a million other things. We are trying to sell our house and move to New Hampshire. Only 15 days ago, we were kind of under contract with my dream house and needed to sell our home down here within 7 days to solidify (is that the right word??*) that contract and move forward with our plan to go north and start the next chapter of our lives. I'm not saying we won't be doing that. I'm just saying that the next chapter is going to BLOW YOUR FUCKING MINDS. (Well...all right maybe not. It blew, mine though.) Each day that annoying pain moved up the pain scale. It went to fire-like pain in the feet. And then added shooting pain. Then added random electrical shocks. Add muscle spasms. Add metal bars being hammered through joints. And the GRAND FINALE 4TH OF JULY FIREWORKS STYLE...............ZEUS THROWING LIGHTNING BOLTS IN QUICK SUCCESSION! No Boston Pops playing in the background. Only my screams....
Okay, enough with the drama. It really does hurt that bad, though.
I spent 5 days on med surg floor swallowing Dilaudid and half being worked up by a neurologist/half being looked at suspiciously/skeptically by a lot of staff thinking I was there for the meds/attention/etc. Awesome. The Dilaudid didn't even do anything you dipshits (you guys weren't really dipshits - most of you were really REALLY sweet and I really appreciate all you did!). Almost nothing at least. I tried to not take it and found that it was more miserable to not take anything, so I asked to be put back on . Screw you for your judgement. You weren't the ones with the brains on fire.
I'm done. I'm really not an asshole. I'm just in limbo right now. I'm sitting at home - they discharged me with nothing but Neurontin 300mg BID (helps with neuropathy: i.e. nerve pain) and Inderal 20mg BID (I can only convince myself to take 10mg BID at most because my BP has been running so low anyway in the past few months since quitting drinking.) The prescribing doctor not only knew this, I called her after I was discharged and again voiced my concerns about the choice of drug. She said I could just take one pill instead of the two. Le Sigh. Okay. Moving on.
So here I sit, my muscle twitches have finally slowed down a little bit and I no longer feel like I am tied to a stake. But my skin is so insanely sensitive and my legs are feeling a bunch of different painful sensations at once. I am quite tired, my thoughts are going quickly and are jumbled, and I can't form a straight thought when I really want to. It gets stuck somewhere on the way out. Luckily, my husband has gotten used to this because of the first time this symptom appeared this summer when I was overwhelmed after coming home from residential. (That flare up makes so much sense now....) Instead of just stopping and waving my hands and staring at him while he helplessly stares back, I continue to try to talk, using other words to describe the word I am looking for. Most of the time he gets it. It isn't ideal, but it helps out a lot with communication. (Quick shout out to all of my girls from resi who made us play Heads up every night during snack time and taught me phrases such as, "the grass is getting shorter!" to describe a lawnmower....and "I stand up and I'm funny!" to describe a stand up comedian.) And communication is so important when you are dealing with this monster. I should know. I've been doing it for, like, 6 days.
Hah! Ah, Feck.
I don't even know if I'm going to post this. I'm just writing to get all of this out of my head. It's so full that I have no where to put any new thoughts. For right now I'm going to lay on the couch because my hands are too shaky to continue and I forget where I was going with any of this. You can't write a good blog if you forget what the hell it was supposed to be about.
That's all for now.
Addendum: No, we do not have a definitive diagnosis yet. We are running a battery of tests and ruling a ton of things out. Which should be awesome, right? Except I still have all of these shitty symptoms and I just want to know what the fuck is going on so I can be medicated correctly and know what the FUCK I am up against. Okay, I really am done now. With this entry, at least.
Just kidding! One more thing....Here's the list of everything we have ruled out, just so I can stop the barrage of e-mails of suggestions as to what it may be (Thank you for thinking of answers for me though!):
It is not......
Now I'm really done. Yay!
Mother and wife by day, psych RN by night. So many different ways to view life. I try to take everything in and be very slow to judge.