An FYI

I have a little bit of a rant today. It’s not prompted by anything specific, it’s more the product of some collective things. I’m going to start off shedding some light on some medical issues I’ve been having lately. If you already know about them or just plain don’t care, feel free to skip down.

Back in October I went to a routine eye exam where I was told that my optic nerve was elevated. I didn’t know what that meant, of course, and the Doctor wasn’t particularly amused by my response of “cool”. He said that it means there’s swelling behind my eyes for some reason. He wanted to keep an eye on it, but when I came back for a follow-up the next week he had me redo every test and said he didn’t feel good about it --that occasionally he gets nagging feelings about cases and feels prompted to address them and this was one of those times. He then explained that the most common cause of this elevation is a brain tumor. He was hopeful it was not a tumor and instead was a rare condition that mimics a tumor. He needed to refer me to a specialist, a neural ophthalmologist in order to have the right testing done. So, I waited a few weeks and then went to see the specialist. I figured he’d say it wasn’t a big deal, but he kept asking about symptoms (have I had vision problems, have I had ringing or whooshing in my ears, have I been shaking, have I been dizzy, have I been forgetful, have I had severe headaches). I had all the symptoms but also thought I had alternative reasons for every single one so I never even thought they were a problem. For the last 9 months or so, my vision blacks out for 15-30 seconds or so and I can’t see anything. I figured I’d just been worn out and stressed, because it always stopped after a nap. I’ve had headaches my whole life, so I figured there was nothing new, except that it was worse when I was exerting myself, bending, or coughing. I blamed my bipolar medications on the dizziness and shaking. I’ve been confused, but I figured it was just stress and exhaustion (even though my husband doesn’t think forgetting things like what a car or a cup is called is normal). The specialist was understandably concerned over the situation and said that there is something causing the elevation and they needed to know what. The protective sheath that surrounds the optic nerve is the same one that protects the brain so we needed to pinpoint where the problem was. He also thought (like the regular eye doc) that a rare condition called pseudotumor cerebri meaning “false tumor” or idiopathic intercranial hypertension, could be the cause. In this condition, for some unknown reason the cerebral spinal fluid doesn’t absorb and instead backs up in the skull, putting pressure on the brain. The symptoms mimic that of a tumor, so it’s important to figure out what is going on. He sent me in for an MRI with MRV which came back clear of tumors and clots. It did however, show pressure on the brain. This necessitated the spinal tap. They needed to run the fluids for some scary things like MS and meningitis, and several others that I couldn’t even attempt to spell. They were really leaning towards the pseudotumor/IIH diagnosis by this point, but they needed to fully rule out the cause of the pressure issue before moving forward.

I went in for the spinal tap last Monday and then I got the call holding the results later that day. He told me it came back clear of everything, but that my fluid pressure was high enough to diagnosis the pseudotumor cerebri condition they had suspected. A normal adult has an opening pressure between 10 and maybe 22 and I was at a 35. It sounded even worse when I found out that often when the pressure reaches 40 - 50 it is not uncommon for the person to be unconscious from the intensity. It was a little terrifying to find out mine was so high and I didn’t even know it. They were able to bring down my levels from 35 to 16 through the spinal tap and I’m temporarily on a couple medications to help keep levels down.

If you’ve noticed a couple of my Facebook/Instagram posts, and if you’ve made it this far in reading my post you might have noticed me saying I’ve been having some issues the past week. I was told that something called a spinal headache can happen after a lumbar puncture (and after epidurals, although the 3 I’ve had have NEVER given me one before) but that they’re not that common. Just FYI… they lied. Google says up to 45% of lumbar puncture and epidural/spinal patients get them. On Tuesday after my 24 hours of laying down, I tried to get up and felt like someone shot me in the head. Now, I’ve been around the block a time or two with migraines (I’ve dealt with headache issues for a loooong time) so I’m not kidding when I tell you THIS WAS HORRIBLE. I joked with Caleb that he should just put me out of my misery and shoot me. It really did feel more humane that expecting me to function while repeatedly dealing with a headache of that intensity that NO amount of Tylenol could touch (Excedrin was off-limits at that point). The headache would instantly go away when I laid down, but with three kids, that’s not so easy to do. I was supposed to lay down and stay down as much as possible if I got one, but it’s really hard to do that. It lasted until basically today. When I could try Excedrin, it got me maybe 45 minutes pain free (although you could still feel it looming) before the headache would rear its ugly head (Excedrin makes me a little loopy anyways, so Caleb highly discourages it).  I still have a little bit of the headaches now, especially in evenings, but no where near as bad as it was. We had a couple rough nights where the kids were terrified and kept asking “Daddy, what’s wrong with my Mommy?!” I’d like to avoid a spinal tap ever again, just so you know.

        

YOU CAN START READING HERE IF YOU SKIPPED THE REST

You may be thinking “Oh, that’s not so bad” or “I’m so glad it’s nothing serious!” If that’s what you’re thinking, seriously please just keep it to yourself. It is not helpful in the slightest bit. Things could have been a whole lot worse and we’re really grateful they’re not, but you need to understand that saying those things completely minimizes my right to be stressed over everything we’ve gone through in the last six weeks. I spent four days having nightmares that I would have to tell my kids I was dying. Would you like to give that a try? … I doubt it. Would you like to forget what basic items are called? A car? A cup? Who forgets that crap?! And when I say “forgets”, it’s not like scatterbrained forget, it’s more like sitting there for a solid minute and literally blank with nothing coming to mind because you can’t FOR THE LIFE OF YOU recall what that is called… and you’re terrified because you should know it, but you can’t remember. “Go get in the… the…. The… the… uh… the… THE THING YOU DRIVE!” Go ahead and try to tell me that isn’t an issue. Problem solving at its finest because good ole’ mom can’t remember what a car is called. So, believe me when I say that we are so grateful I’m not dying or dealing with some debilitating illness that will force my children to care for me in my old age. But please, don’t for a second thing that this is just a headache or just a condition that will go away and that it’s not a big deal. It is to me, and I like to think it’s a big deal to the people that care about me.

There is no cure for this condition. In fact, there isn’t much known about this condition at all. One of the limited connections they’ve made is that women of childbearing age tend to get it more than anyone else, and that if those women are overweight, losing 10% of their bodyweight helps lessen the intensity. So, it’s not really something I can do a quick fix with, but I can’t just slack off either. I can’t just take medications for this. All medications are temporary fixes, so the fact that this didn’t turn out bad is really a “we’re so grateful it didn’t turn out bad THIS FIRST TIME” mindset. The goal is to make sure it doesn’t happen again, and I have to put in the hard work for that. Now we just hope and pray we can keep it all down so that it doesn’t progress and cause worse things, like permanent vision loss. Each and every time someone tells me it’s not a big deal it digs in and it hurts. 

I know I've used the term pseudotumor cerebri more commonly than idiopathic intercranial hypertension when I've talked to people, and maybe it's made everyone focus on the "tumor" part, false as it may be. Then when you learn there's no tumor, you don't care (to be honest, it feels that way with a lot of people I've talked to). But I just want you to know that the only reason I prefer that term over the other is because it's literally half the amount of syllables. When you talk about it to people over and over again it gets really old and it's easier to use the shorter one. So if you've felt misled or like I made it sound worse than it was, I can assure you it wasn't my intent. We waited to talk to almost everyone until after we had the results of the spinal because we wanted to make sure we had all the answers when people asked. My life and my health is not about starting drama, I can promise you that much. 

We’re having to switch up my bipolar meds because they inhibit weight-loss a bit, so now I’m popping literally like 10 pills throughout the day between the ones I was on, the new ones we’re switching to, and the temporary medications to help keep my levels down, and I’m exhausted and feel like crap and just hoping and praying everything gets sorted out in time for me to enjoy my graduation (which by the way, is next week. Because all of this had to happen now.). So, when you take all of this in to account and start saying that what I’m experiencing “isn’t a big deal”, you might as well just pick up another stone and throw it at me. It hurts. And if you’re someone who’s known about all of this and are reading it and thinking “oh crap, did I say that?! I think I said that!” just know that I’m not counting cards here. I’m not singling anyone out. And you know what? I’ve had plenty of people who’ve said just the right things when I’ve talked to them about this. And I really have appreciated each one of them. I just felt the need to let everyone know that I’m a little fragile right now. And that some of these meds have the unfortunate side effect of serious irritability (oh, and that I feel like my hands are being electrocuted throughout the day, too, which only adds to making me irritated), so I refuse to be held accountable for what I do or do not say to you about my health issues from here on out. I’m 100% tired of talking about it and hearing how much it “isn’t a big deal" in other people's minds. So instead of just silently hurting, I'm letting it out and just giving everyone a big FYI that if you suggest to me that what I'm experiencing is better than an alternative option or that it could have been worse, you might as well be telling me you'd rather I was dying. Because that's how I'll take it deep down. 

The one thing I keep thinking is how much we know so little about what is going on in someone else's life. We can't be aware of every single little thing, but I do think we can try to care more about other people and take a general interest in their well-being. I'm determined to believe that no one has a perfect life. So many of us try to put on a facade and paint a picture that shows the perfect life, and while it may be annoying as heck, it's ok. It's ok to try to be perfect and fail miserably at it. It's also ok to try to be perfect and do a dang good job of making it look how you intend it to. It's kind of like this post (the first comparison, not the second). Honestly, I hardly deliberated on this, and I may seriously regret it tomorrow. It's not perfect. Its probably riddled with spelling errors (that I'll blame on meds or recovery) and maybe I could have figured out a better way to cope with how people's comments make me feel. But you know what -- it's ok. It's alright if I occasionally post a mess of emotion where I would have kept things so much more restrained if I was talking to you in person. It's alright, because right now, it's all I have to offer. It's the best that I've got. It's genuine; it's raw; it's messy. It's ok for me to admit when someone has hurt me, especially when it took me a lot of guts to tell anyone about these issues in the first place. It wasn't my first instinct to do so, but along the way I've mentioned it to more and more people and now it feels like I'd rather people just know about it, and if you're going to hurt my feelings, just choose to keep it to yourself. Or just do us both a favor and remove me from your friends list. PLEASE.

It comes down to this -- it doesn't take much to be kind. It doesn't take much not to judge someone. And it robs you of nothing to just do as Thumper would do -- "If you can't say nothing nice, don't say anything at all." So this is my public notice of sorts, and now it’s been said. Take it and do what you will with it. But I will warn you that if you think you’ll be funny and lighten the mood by saying how much it isn’t a big deal or I should lighten up, I’ll probably unfriend you because I don’t have time or patience to deal with people who act more immature than my two-year-old.

That is all.

Later.