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......
- B12 deficiency
- Brain Tumor
- Mitochondrial Disease
- Herniated disc (I do have one, but it is not the cause of my symptoms, unfortunately. Just an added bonus!)
- Chiari's Malformation
- Parkinson's Disease
- Lyme disease (I personally don't think this is it, as I haven't noticed any problems with my vision other than the normal blurriness that is fixed when I put on my glasses. Also, I haven't had a fever in a very long time. Definitely not since way before I was in the partial program, which was when I had my first "episode" or whatever you would like to label these horribly awful sucky vicious and soul-sucking days of my life.
Now I'm really done. Yay!