wendyswriting

[wendyswriting]

That did not help...

A few months ago, just after our anniversary in February, Chris and I got to talking about expectations of engagement on holidays etc. I told him I already know not to expect it around holidays, birthdays, anniversaries, etc. He said anniversaries weren't necessarily part of that list.

Since then, I've wondered. And then tried to put it out of my head, because getting my hopes up is a surefire guaranteed way to crash expectations and make me feel bad. So I've gone back and forth between wondering/hoping, and chastising myself for even thinking about it. Just enjoy the damn trip and don't obsess. Stupid woman brain.

So last night, after I finished packing for our upcoming vacation (we're going to a resort to celebrate our 20th anniversary, though a little late), I crashed out thinking about it. When he came to bed, I sleepily told him to please just tell me he wasn't going to propose this weekend so I could shut my woman brain up.

Instead of telling me he wasn't ready or whatever, y'know, the usual, he said, "Can you just not think about it?" With this weird tone in his voice.

What the... ???

NO. NO I CANNOT... NOT NOW!

FML. Woman brain = overdrive now.

[wendyswriting]

Blame

At what point does taking responsibility for your actions (or inaction) and situation become less helpful and more self-deprecating? 

When I worked at the radio station, I experienced a shift. My boss told me I needed to stop blaming others for the mistakes I’d made and start taking responsibility for them. And she was right. I had been coming up with every excuse in the book why something wasn’t my fault. It was annoying and abhorrent and I hate it when other people do that, so why was I? 

So I stopped. 

The thing was, as open as I was (and am) to accepting responsibility when I mess up, there are two other things that go along with that for me. 

1) I instantly become defensive if blamed by someone else for something I didn’t do/cause, but...

2) I can easily take on the blame myself for things that I didn’t do/cause.

This time last year I was full of hope. I had a new medical plan with a deductible and I knew that one of the specialists I was going to see would want an MRI, which would meet my deductible straight away and everything else I had done would be covered at 100%. It was amazing. I had appointments with two endocrinologists that I’d hoped would help me get on track. I was going to get an MRI of my brain and we’d see if I was dealing with a growth or a tumor or an issue with the pituitary gland. I was put on a new med to help me lose weight. 

But all in all, it came down to “everything’s pretty much normal”. There were some things askew here and there, as is wont to happen with Hashimoto’s, but essentially, things are looking fairly OK, so it came down to me. 

And this was frustrating, as I’d looked for reasons why I keep gaining weight, why my body hurts every god damned day of my fucking life, why I’m fatigued as hell and, left to my own devices, can easily sleep the majority of the day away, but no. It’s me. 

So it comes to this. It comes to facing the fact that these things contribute to the issue, but the biggest problem is ME.

I’m the biggest a lot of things.

Bee straight up told me that we’ve looked at these things but they’re not the biggest factors. It was hard to hear, because I’d been so desperately wanting to be able to look at something and say “OK, here it is. THAT’S the thing. That’s what’s causing all of this!”

Turns out I need a mirror.

But I’ve found myself ruminating on this and turning the responsibility to myself, and I feel it merging into blame and blame is negative. I found myself talking down to myself in very hateful terms for doing this shit to myself. It’s not helpful at this point. It’s worse. But I am having difficulty navigating these waters. 

I’m trying not to be body negative, but I sure as hell can’t be body positive right now. 

Fuck.

[wendyswriting]

Hi. My name is Hashimoto’s. I’m an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid. I am now velcroed to you for life. If you have hypothyroidism, you probably have me. I am the number one cause of it in the U.S. and many other places around the world. I’m so sneaky–I don’t always show up in your blood work. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and any way I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over. Remember when you and energy ran around together and had fun? I took energy from you, and gave you exhaustion. Try to have fun now. I can take good sleep from you and in its place, give you brain fog and lack of concentration. I can make you want to sleep 24/7, and I can also cause insomnia. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. I can also give you swollen hands and feet, swollen face and eyelids, swollen everything. I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That’s me. Crying for no reason? Angry for no reason? That’s probably me too. I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me. I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don’t discriminate. Some of my other autoimmune disease friends often join me, giving you even more to deal with. If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons: That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) You may have a family history of me. Whatever the cause, I’m here to stay. I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants. There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That’s probably me. Can’t get pregnant, or have had a miscarriage? That’s probably me too. Shortness of breath or “air hunger?” Yep, probably me. Liver enzymes elevated? Yep, probably me. Teeth and gum problems? TMJ? Hives? Yep, probably me. I told you the list was endless. You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away. You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these ‘understanding’ (clueless) doctors, to see a psychiatrist. Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be. Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago. They’ll also say things like, “if you just get up and move, get outside and do things, you’ll feel better.” They won’t understand that I take away the 'gas’ that powers your body and mind to ENABLE you to do those things. Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next. You’ll be told things like, “Oh, my grandmother had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE’S taking, doesn’t mean it will work for you. They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ requires the proper amount and the right kind of of thyroid hormone medication for YOU. Not what works for someone else. The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand. I am Hashimoto’s Disease.

Gena Lee Nolin (via aninfinityofwarmth)

[wendyswriting]

Really tired of the attitude that eating can “ruin” your progress in the gym. No, fuck you. If you run a mile, that’s a mile you ran. Your legs are stronger, your lungs are stronger, your heart is stronger. I don’t care if you ate an entire cake, you still ran a damn mile. 

If you view exercise as something that “cancels out” food then you’re gonna have a bad time. If your only exercise goal is to burn calories, I don’t know what to do with you.

[wendyswriting]

[wendyswriting]

PSA: “Healthier” does not mean low calorie, low fat, low sugar, low carb. Healthier does not mean less.  Healthy is relative to each person’s needs.

Also, guilt-free is not a description for food.  Guilt is not an ingredient; it is a feeling.  No matter how many ingredients or calories you remove from that food, the guilt is in your mind, not the food.

[wendyswriting]

As always, it’s been a while...

I had a FNA (Fine Needle Spiration) biopsy done on my thyroid and it was one of the weirdest feelings... omg. They used this numbing spray to numb the skin since basically they stick a needle into the thyroid nodule and jab it up and down several times, and by doing so it collects several samples of cells and shoves them up into the needle (kind of the way they do geological surveys by collecting layers of samples by sticking a giant tube down into the ground, but in and out instead of just straight down). It still hurt and I could still feel everything, but who knows how much worse it would have been without the numbing spray!

The results came back benign - yay! Basically, my thyroid is still pretty fucked up, but not cancerous. Woohoo!

I was rather confused when I got a check from my insurance in the mail, but it turns out the specialty lab they use (it only processes thyroid nodule samples) is out of network and my insurance does a weird thing where instead of paying that amount, they cut the member/patient a check and they pay from there. 

It turns out that I lost the bill from the lab and hoped they’d send me another so I knew who to pay, but the next thing they sent me was a letter with a financial assistance application. OK! As it turns out, I qualify for their assistance program, so why not? The Universe knew I needed the money from the insurance company when I did (my plan was to cash the check and use it for my bills, then make payments to the lab out of my HSA as it was funded). It may work out to just be a straight blessing for me. I may not have to pay anything. And if I do, it’ll likely be less than was due, which is still awesome. 

I’m not sure if I have mentioned this before, but my PCP is AMAZING. She is SO cool and straightforward, but loving and cares SO deeply, and is so generous. This past month, I was fortunate enough to be on Isagenix shakes and vitamins because she gave them to me to try. How amazing! Have you SEEN the prices of these things? Mind. BLOWN. I’m SO grateful!

I was going to try to do 2 shakes a day, but ended up doing one for breakfast instead. I ended up having three PM vitamin packs left over, and those were from a few nights where I ended up passing out before taking my night pills. But oddly enough, I noticed this past month my back, for the most part, has hurt less! HOW? The only change is the Isagenix. Weird!

She also recommended a book to me, and we’re actually doing a bok club at work on it. Every Thursday, a few of us (usually around half a dozen) read a chapter and meet to discuss. It’s been really nice to have that camaraderie with my coworkers! 

[wendyswriting]

There was a PROBLEM!!!

I had my Endo appointment on June 12th, and it was well worth the drive! Well, I mean, I find a drive alone pleasant anyway, but this was good. Aside from my GPS taking me to a different place, the auxiliary members inside not knowing WTF I was talking about or even that Endocrinology existed (for real, and one lady was like, “Is that a kind of cancer, dear?”), then giving me incorrect directions and making me late for check-in, it was all good. And now I know how to get to the office so we’re good!

Roberta asked me to move my chair over to her so she could take notes, enter my data, and also pay attention to me and make eye contact with me. Great start! She had actually READ my big long symptom list and right off the bat acknowledged that I “have a LOT going on!”

OMG. Yes. Please be my Endo doc forever.

So then she asked me a LOT of questions and actually LISTENED to my answers. She asked a few a couple of times, either because she had been typing when I answered and maybe missed my answers or wanted to see if I gave any further info. IDK but it doesn’t matter. I felt very valued, listened to, and validated. She said that she likes that I’m an informed, advocating patient (indicating toward the stack of papers and manila envelopes I had brought).

She did mention there was no supporting lab values for the dx of Hashimoto’s, but I think there are. I’ve had a few antibody tests run. But when I mentioned that, she said she’d prefer to see where they are now, and go from there. I’m fine with that. Being informed from testing done now as opposed to testing done several years ago is good with me.

She had one of those plastic displays showing the types of thyroids seen in people with various conditions. The normal one was smooth.  The Hashimoto’s one was enlarged, irregularly shaped, and bumpy. She felt my thyroid, gave me some water and had me swallow while she palpitated the area, and told me she thinks I have a nodule on my left side. I couldn’t help but think of the scene in Pitch Perfect where the redhead dramatically tells the girls “I… have nodes.” :-P

She then drafted orders for over a dozen lab tests (with about five of them being panels with oodles of tests each, so TONS of testing being done!) including the Hashimoto’s antibody, CBC, CMP, thyroid panel, celiac panel (duuuuude that would SUCK), and a bunch of others. I’m hoping I can get signed up for the portal soon so I can get those results!!I had them drawn the next day, which was 5 days ago, and she said some of them and DNA tests that can take about 2 weeks to process. I tried getting on the portal and was unsuccessful, so I’ll need to call on Monday and have someone enable me.

She ordered a thyroid ultrasound, which I’ve never had done before. I was excited to have it, though I know that for the most part, my testing tends to come back as WNL (Within Normal Limits) even if I feel like shit. So I had it done Thursday and Doyle was the tech doing it. I love getting ultrasounds done by Doyle, because he’s great at explaining everything he’s doing and answering questions along the way within his scope of knowledge/ability. Fully expecting my thyroid would look perfect (perhaps but for a small nodule), I was surprised when he had JUST put the wand onto my neck and laughed. “Your thyroid looks exactly like mine, kind of creepily so, and that’s not necessarily a good thing. I shouldn’t laugh! I’ve just never seen someone whose thyroid looked like mine before!”

Fuck yeah. Validation.

Because of the angle of my head during the test, I couldn’t see what he was doing, so he told me when he was done he would go through everything with me and explain what he found. Did I mention I love having Doyle do my ultrasounds?

When we were done, He walked me through it and showed me that my thyroid is enlarged, bumpy, heterogeneous (doesn’t all look the same), and actually has a couple of nodules, one that was what Roberta felt, and one that is in the middle part that connects the two lobes. Both are about the size of a marble, so IDK how I can’t feel them!

Roberta called me the next day and left a voicemail (I missed her call, dammit!) letting me know that my thyroid does show a couple of nodules that she wants to get biopsies on. She made it a point to emphasize that most nodules are perfectly benign and not to worry about them. And I’m not. I am, however, SUPER curious to know what my life and body would look like if all else was the same but my thyroid was normal. What difference does it actually have on my life? What impact?

I asked at the hospital and they don’t do fine needle thyroid biopsies here, and the consensus was that Flagstaff was the closest place. But it turns out they do them in-office down in Cottonwood. I know it’s an extra hour drive, but I really don’t mind having it done right there in-house with my doc. In fact, I like that idea. The biopsy itself is a trip, and I hope they use that stuff that numbs the skin for future pokes, because that’s a lot of pokes. The site I looked on showed 2-6 pokes, and I think because I have two maybe twice that? IDK but she will call me Monday to talk about it more.

What would my life look like if my thyroid was normal? What would my body look like?

Would I wake up each morning feeling like I actually got sleep? Would I have the energy to go for a run? To blend up a nice protein smoothie and do some yoga before work? Would I not weigh damn near 300 lbs and feel like I barely have the energy to move my body from one side to the other in bed? Would I feel like I could make it through a day without my body screaming at me to lay down and nap? Would I not have to pace myself because I know I only have so much energy to spend? Would my body not ache down to my bones every day for no apparent reason?

So many questions. So many things I wonder. So many things I hope to find out.   I’m very curious to see how things go from here! I feel like I have a long way to go, because she told me that since I DO have so much going on, we were going to have to pick a place to start and go from there. I must remind myself to have patience. I can’t help but want to tackle everything going on since I’ve found someone who actually takes me seriously, and she will help with it, but pacing myself will be a challenge to overcome.

Having someone take my problems seriously and giving me the glimmer of hope that I can get better is just so exciting!

[wendyswriting]

Adrenal Fatigue

Wow. So I’ve been doing some reading and came across this issue. I’d seen it mentioned before and wondered about it, but never really looked too deep, or at the time my symptoms didn’t really match up too much.

But right now? I watched a video (the one I posted today) - a webinar on Adrenal Body Type - and I cried. It described me in a scarily accurate way. I’ve looked more into it and seriously. It’s crazy.

Symptoms to look for:

My blood pressure remained a PERFECT 120/80 for YEARS (my doc was flabbergasted and told me that whatever I was doing - keep it up!), then shot up to 132/86 for the last several years, and I was put on high blood pressure medicine. I was taken off a couple of months ago and ironically, my BP Has since regulated some to 121/79. But I still regularly have an orthostatic reaction (lightheadedness when going from sitting to standing).

I’ve gained 12 lbs in the past month and a half. I can’t control my insatiable cravings for salt and sugar. I’ve broken the no-chocolate habit I worked so hard to maintain and I’m sure that and my salt cravings have made the 12 lb gain happen. It just kills me that I steadily gain and am getting back toward 300 again. That’s fucking with me mentally.

I have very little experience with the UP part of this, but the fatigue, lack of stamina, tired but wired, and lack of get up and go... that’s the story of my life right there. Every fucking day of it.

YES!!! I’ve been holding on to a LOT more stress lately, my fuse has shortened to practically non-existence, anxiety is ramped up to the point where I’m considering seeking a new script for Xanax, and I’m having trouble getting myself back to the annoying optimist I’m used to being.

I’m used to being a smart, clever, creative person, but my brain has gone to shit. Hell, I’ve gotten in trouble at work because my mind is so dull. I’ve become at risk of losing my career over this fucking mess going on in my noggin... and, it seems, adrenal glands. Interesting side note: the adrenals ARE controlled by the pituitary gland, which my Internist suspected a problem with.

Thank GOD this one doesn’t apply as much anymore. I say anymore because before I started working in healthcare 6 years ago, if there was something going around I would catch it twice and feel like death for a long time in between and after. I am living proof that exposure helps lol

This is one where it went from bad to surprisingly not bad, and recently back to annoying. When I started my current job, I had to switch from nights and weekends to mornings, and I started taking melatonin to help me sleep at night. It sure does help, a lot. I found that, aside from still momentarily waking when I tossed and turned, which didn’t happen as often, I would fall asleep pretty quickly and actually stay asleep. But over the past few weeks, I’ve been waking more frequently throughout the night, and I’ve started waking up fully - usually around 3-4 a.m. - having to pee and then going back to sleep. Thankfully it doesn’t take *too* long to get back to sleep. But since this started I’ve also been straight up fucking EXHAUSTED throughout the day. Like, if I close my eyes for a split second longer than a blink, I feel myself WHOOSHing into the Land of Nod.

When I was younger, I had a crazy high libido. Chris actually used to call me insatiable. Now it has dropped dramatically and I HATE IT!!!

Duuuuuuuuuuuuuude. This is crazy accurate. I still can’t help but wonder about a connection with my pituitary gland, which controls the adrenals. But this stuff is bananas!!!

[wendyswriting]

Wowwwww this video (between 05:00-20:00 ish especially) made me cry. This is SO perfectly me. Jesus. Down to my body shape (except I have fat legs too, kind of a combo of this and the Thyroid body type). I definitely plan on talking to my endo PA about this when I meet her. I stopped watching when the sales pitch came at the end, but before that was jaw-droppingly me.

[wendyswriting]

Well, it’s been a millions years, hasn’t it?

So my brain was perfectly fucking beautifully normal, apparently. Because of course it was. I mean, don’t get me wrong! I’m SO grateful to not have fucking brain cancer or MS or something! But it also meant I was no further toward figuring out WTF was going on than before.

Since then, I’ve done Physical Therapy for vestibular imbalance and wouldn’t you know it’s helped? :o So that was cool.

Now I’m headed to an Endocrinology clinic in 11 days to see if we can’t get to the root of some crap going on hormonally. And thank fucking GOD because this out-of-control feeling is killin’ me, Smalls!

So yeah. I could update much more but something else is on my mind. So there’s that.

[wendyswriting]

Self-aware organ is self-aware...

I can’t wait to be told the standard “Everything looks just fine!” by the doctors and be done with this constant match of hyper-speed ping pong my brain is playing.

Just go back to being my normal neurotic self instead of this worry wart.

My brain... the organ that worries about itself.

[wendyswriting]

Stream of Consciousness

You don’t have to bother reading this. Really.

My brain goes back and forth on everything at about a million miles a minute. I’m constantly playing devil’s advocate against myself.

I figured just typing out a little portion of what was racing through my brain would help me get some sleep. I have to work in 8 hours. 

This could very well be nothing, just like 95% of my other tests. Or it could be something. If it is something, it’s probably minor. Or it could be a fucking potato-sized malignant, non-operable tumor. I don’t want to die! You’re not going to die, Jesus... fucking drama queen. I’m glad someone who knows their shit found something not right. Of course you are, you fucking attention whore. No really, I’m glad because I have said for years that something is not right. Now it is the first step toward proving it. I wish I would have insisted on an MRI sooner. It won’t show anything. It might. Then I fucking hope that the radiologists actually see something if it’s there, and not miss it, saying everything is fine when it’s not, making me look like a fucking faker and making any doc WAY less likely to run another MRI down the line for comparison, and BOOM I could die because it went undetected. I could die suddenly from a toilet seat hurdling through the air, debris from a space station. What’s the point? What if I do have something wrong? What if I need surgery? Will the risks outweigh the benefits? Will I lose my hair? Will I have to do chemo? Will the surgery be successful except for affecting some other part of me, and I suddenly can’t do something I could, or it changes me in a bad way? What if I go deaf? What if I go blind? What if I turn into a fucking vegetable? What will Chris do? Will Chris marry me beforehand? Is that a good idea? Would it complicate things for him if I died and we were married? Would it be easier for him? I need to do my fucking HCPOA. Would we still be able to get married on our anniversary? What if I get suddenly sicker and we have to move it to sooner? Will I still be as happy with a new date? Who am I kidding - of course I would. I’m marrying Chris. I’m fucking scared. But knowing me, I’m probably scared and crying and breaking down and all worked up and it’s... nothing. A mistake. I need to calm my shit when talking to Bee. She’ll think me a loon if I allow myself to dump what I am ACTUALLY thinking on her. God I hope she orders the MRIs like I’m going to request. I’ll be pissed if she doesn’t, honestly. I would ask D or Hotcakes to do it instead. I’ve seen countless tests done for patients for way less shit. Why am I even doubting it? My house is a fucking disaster - what if I DO need brain surgery? There’s no way I can come back here in this condition. That means other people would have to clean it up to get me home - and I only trust a select few. Bex said I would likely need to recover at her place. She’s right. I wonder if she would be cool with Chris staying there, too. I would feel so alone without him, even with my BFF there with me in the next room. There is something about this situation that makes me want to cling to him and never let him go. I’m afraid of dying. I’m afraid of being a veggie and making him make the choice what do to. He should go. If I’m a veggie I want to not be in this world anyway. That’s no way to live. Fuck that. What will happen to me if I die? What do I want done? Will I find out if there is a Heaven or Hell, or reincarnation, or will all just cease to be? Would it be painful or immediate and peaceful? Would Chris stay in town? I hope he would do something great and go somewhere he is happy. I hope he would follow through on his dreams and do great things like we both know he is destined to do. I always pictured myself with him through all of it, but this is the first time I’ve put this much thought into the possibility of not. I’ve not thought about death this much... ever, I think. Not my own. Will I see Daddy and Nana again? Play with Bonzai? NO! This is probably my Thing, so I’m going to be fucking FINE. It may be hard, long, arduous, trying, struggling, full of strife, frustration and misery, but I can survive. I just have to remember it is my Thing and plow forward. If I have to have surgery and stay with Becca, what about Meeko? She’s getting old - what if she dies and I’m not able to... what? What would I want to do anyway? If the science foundation won’t take my body if I die, should I be cremated? Mix my ashes with silver holographic glitter and have people take some with them to spread somewhere beautiful that makes them happy. That way I can be all over the place like I want to. I should have traveled more when I could. I still fucking can! It’s not like I’m dying of a brain tumor! HAHAHAHAHA! No really, though, wouldn’t my symptoms be worse and sooner if it were reeeeeally serious? Maybe this is something totally benign and fine. I would kinda prefer that. It’s still something, but it’s something I will live with. Can live with. For a long time. 

No answers, really. Just endless questions. But it did help to get just this little portion of what’s going through my mind out and on here. Now... sleep.

[wendyswriting]

Being a Self-Advocating Patient vs. Hypochondria: Where is the Line?

(Or maybe less Hypochondria and more “reaching for a diagnosis”? Because a diagnosis is a thing with a name and, oft times, a treatment.)

For as creative a person as I am, my left brain takes over in a big way when there are big things to tackle. For instance, when I am planning a trip, the creative part of me is excited at the travel and possibilities, but my logical part wants to know, nail down, compile, organize, and confirm the exact destination, how to get there, where we will stay, what to know about where we will stay, what we will do, insider info on activities, contact info for them, where will we eat? Can we find a Groupon for that? I print it all out and slip each part into a sleeve protector in a binder, in order of use. Maps, confirmations, coupons and certificates, contact information, and names/phone numbers of all people I spoke to about it.

This logical, facts-driven, “I feel the desperate need to soak up all possible information I can about this subject” way of thinking also applies to my health. I research like a madwoman. For as much research as I do, I may as well just go to medical school! 

Symptoms? I research them. What is this lab test ordered? Research it, why it’s done, common reference ranges and implications of various results. Given a diagnosis? Time to pore over scientific and medical studies related to it. I try to stick to purely informative and less subjective sources, though I do start with wikipedia because of the links... I am a linkaholic. Whether it’s clicking because I want to know “What is that word mean?” or “Oh, that’s related? Let’s find out how...”

I get copies of all of my test results. I even like to have copies of the orders to attach to my copies of results. 

I go to doctor’s appointments with lists. Lists of my symptoms, what I think they may be related to and why, and what I would like to discuss doing further. Often they will read this list and address some of the points and leave some untouched.

Now I don’t know if it is because of the nature of my research-everything mind and finding new things that catch my eye as being something I can relate to, or if I am genuinely dealing with more things than the average healthy person my age. I have no comparison since I have, since as long as I have been old enough to focus on my own health, had this general feeling of crappiness pretty much 100% of the time. That IS my normal. But IS that normal? Does everyone feel kinda crappy all the time and they just don’t bitch about it because it IS normal? And because it’s not a big deal? Am I super sensitive to normal, making it more than it really is?

Am I just a whiny, pussy-ass bitch?

Am I only finding more and more things to associate with by DOING this research? Ironically enough, I just tabbed over to do some research and it seems that I am more describing Munchausen Syndrome.

Munchausen syndrome is a psychiatric factitious disorder wherein those affected feign disease, illness, or psychological trauma to draw attention, sympathy, or reassurance to themselves. Munchausen syndrome fits within the subclass of factitious disorder with predominantly physical signs and symptoms, but patients also have a history of recurrent hospitalization, travelling, and dramatic, extremely improbable tales of their past experiences (Wikipedia) 

Am I doing that?! I’ve only been hospitalized once, and they could never figure out the cause and booted me 8 hours later. I DO have dramatic tales of my past experiences that some could find improbable. For one reason or another, I have had shitty experiences with medical professionals in various fields. While I know all of these things have happened to me, do others believe me? Further reading indicates that people with Munchausen will fake their test results and symptoms. OK I don’t do that. Though I have waited to do a routine thyroid panel until I could feel my thyroid cycling downward, because I wanted to see if the low results would show up. Fuck. But no, I don’t fake my symptoms or exaggerate them. So I guess Munchausen is out. Sweet.

Either way, I hate the idea of being a high-maintenance patient, partially because deep in the core of my being, I hate having to ask others for help (I have learned over the years that I likely will not get it anyway), and partially because I’ve worked in the medical field for 6 years and I know exactly how the staff think about high-maintenance patients. They’re annoyed by them. They see their names on the schedule and roll their eyes. They take them less seriously. They judge them.It shouldn’t happen, but it does. It totally does. 

As such, I rarely go to the doctor, even when I should. Case in point, it took me 6 weeks to see my PCP when I was having an acute increase in dizziness and vertigo that was negatively impacting my life. It took me 5 months to see a specialist. I drag my feet figuring that it will improve on its own, and besides, they usually can’t find anything wrong with me ANYWAY, which adds to the whole “feeling like a hypochondriac” thing.

And the average patient that runs to WebMD and decides they have a brain tumor when really, they don’t drink enough water... I don’t want to be THAT patient. 

Funny thing about all of this is, I actually suspect that there is a possibility I might just HAVE a brain tumor. 

And admittedly, I find a great deal of humor in that. :)

[wendyswriting]

How to become a muthafuckin’ detective...

Step 1) Be told by a medical specialist you have a problem in your brain. Not be told further details. Annnnnnnnnnnnnnnnnd GO!

Step 2) Attack the internet (be wary of Wikipedia and don’t even BOTHER with WebMD! In fact, stick to NIH.gov articles and studies for the most part, mmmmkay?) to find out all you can based on the few facts you DO have from your conversation just prior.

Step 3) Learn a lot. And get scared, too.

I mean, it’s Dr. Internet... it has a way of convincing you that you have a freaking brain tumor or something.

Oh wait... you mean to say I really, actually might? Oh... Mmmkay then.

So when I took to do my crazy research, I took pieces of what the audiologist told me. The important details. And I started reaching for any information based on the few key words I did have. Horizontal beating nystagmus, central processing, history of migraine, vertigo...

These led me to learn that it was referred to as “Gaze-evoked nystagmus”, and that it is bloody fascinating how, in neurology, they can look at a set of symptoms like “Oh, your eyes beat on either side at extreme side gazes? That is caused by this issue in this part of the brain!” *ding*! 

So in truth, it narrowed it down. But truly, after a week of poring over articles and medical research, I keep seeing the same thing over and over. Likely this is caused by a brain lesion, with the medulla or cerebellum being the most likely sites though the pons could be affected, but it could be a tumor as well, either benign or malignant, but in those same spots. I read countless articles and studies, watched youtube lectures, and my web history looks like that of a neuro student now. 

What’s interesting as well is that my previous PCP suspected an issue with my pituitary gland. Secondary Hypothyroidism, it’s called. Again, when I did research on that it brought me back to a very common cause being growths affecting the pituitary gland, which sits right above the pons and medulla. 

Logically, it is possible there could be something in there, pressing on both of these parts, causing a whole host of symptoms. Woah.

Causes of lesions and growths are generally unknown, but there has been a link so traumatic brain injury. At first I didn’t think much of it, until I saw “For instance, a motor vehicle accident.” Well shoot, I’ve been in two of those, one of which was pretty damn bad, though we all 3 somehow managed to walk away from it. 

Or, y’know, it could be NOTHING. LITERALLY NO SIGN OF PROBLEMS. Because that is my LIFE. 

What it comes down to is something that I’ve wanted to have done for a year now: I need a brain MRI. And a PCP to write the order for one.

So now I (very impatiently) wait for the Audiologist’s report to come in to my PCP (specialist reports are generally sent in 24 hours. She said a week or so. Whyyyyyyyyyyyyyyyyyyyyy?!?!?) and take it from there. 

[wendyswriting]

Audiology Appointment

I went into some detail in my last entry about it, but not too much. So...

In 2006-2007, I started getting really dizzy and experiencing tinnitus during the day, and had crazy vertigo at night when I was trying to sleep. I went to the doctor who referred me to an ENT. The ENT looked in my ears, talked to me, and diagnosed me with Meniere’s Disease, a disorder of the inner ear. He said the final thing he needed was a hearing test during a vertigo attack, but at the time, the attacks were only at night when no machine or tech was available. He sent me on my merry way.

I went home and researched Meniere’s and while most of it rang true with me, I didn’t feel like I had hearing loss. But he said it was coming, and that scared the living shit out of me, because hands down, I would rather be blind than deaf. Music has such a huge impact on my soul; the thought of losing that was horrifying.

So eventually the vertigo at night pretty well fades away, but the dizzy spells randomly throughout the day continued, plus started peppering in some daytime vertiginous spells. But I dealt with it, just as I dealt with the migraines or tension headaches almost daily, which I have lived with since I was about 7), the fatigue and body aches all the time, joint pain, and all the other shit I live with. It became my normal. I was used to it, though I didn’t like it, nobody could find anything wrong with my lab tests, so clearly I was fine. *eye roll*

Fast forward about 10 years and my PCP (an Internist and the only one who paid enough attention to my symptoms as opposed to my test results, which were always either fine or borderline, and who has since left practicing in his clinic) told me that he suspected I have Secondary Hypothyroidism, and that he wanted me to see an Endocrinologist.

So I went home and I do what I do - I studied it. It was NOT easy to find information on, let me tell you! But what I could find is that a common diagnostic tool for this condition is a brain MRI. I wondered if having one done ahead of time would be a prudent idea, and I don’t remember if I brought it up and he said to see what they wanted to do, or if I just thought about it a lot. I hate that I can’t remember. Not that it matters.

Well, I never did see an Endocrinologist. Life got in the way and I lived with it. It was in the back of my mind, and occasionally I would make steps toward doing so (usually from a push from Kelly), but I never was able to go.

In the mean time, in July of 2016, my dizzy spells and vertigo took a sudden sharp increase. They went from maybe once or twice every day, but for about 5 seconds each, to every few seconds, lasting a few minutes each. I am quite stubborn and it caught my attention but I held off on seeing a doc. I needed to drink more water, I figured, so I did. And it still happened. Well, I must be eating too much salt. That’s it. It’s just the Meniere’s flaring up. Cut the salt and it still happened. Fuck.

But it wasn’t until it happened while I was driving (first time) that I freaked out. It happened twice in as many days and I got really scared. Becca made me promise to see Bee (my new PCP) about it. I did, begrudgingly. She asked me about the Meniere’s and what the ENT put me on for it. I looked at her blankly. “Nothing.” She was appalled. I told her I had no idea there WAS anything I could take for it. Shit, I would have asked about it!

She put me on Meclazine (my THIRD antihistamine daily) and wrote me a referral to see an audiologist. The thing is that the Meclazine pretty much brought me back to baseline for me, so I didn’t know if a trip to the audiologist would even be beneficial. I called their office to discuss it and they said if I was asymptomatic, there wasn’t much point in it, and to call back if I felt worse.

I told Bee and she said fine, for now, but get in to see them anyway when you can. Life happened and the next time I was able was in January. Bee made it clear I had to see them before she would do another refill on the Meclazine, which was making me feel somewhat functional. This scare tactic worked. In I went (amazingly, I was able to get in within 3 weeks, which - for a specialist - is shockingly quick).

We chatted about my symptoms and the audiologist did several hearing and ear-pressure tests. After that portion of the appointment, she said that while it isn’t her place to make or disprove the diagnosis, she truly doesn’t feel that I have Meniere’s. 

She also said (to my great relief) that my hearing was really good (averaging 98%!). 

Then she took me to a darkened room with an adjustable exam table. She had me sit on the table with my legs hanging over, looking at this long, thin LED light bar affixed to a stand. Kind of like this set-up, except I was on the exam table. 

So she put these Virtual reality-looking goggles on my head that have cameras that watch my eyeball movement. I did secretly wonder what my eyes had to do with an audiology appointment, but it turns out there is a fascinating neurological link between the two, in addition to their close physical proximity. 

The goggle cameras watched my eyes while she had me do several tests, all of which required me to hold my head and neck still and use only my eyes (or, for the last four tests, don’t do anything but lay still). First I sat up on the exam table and watched the light bar as a single light scrolled back and forth. It was a red dot and I thought about my cats LOL Then the light jumped around. The bar was then moved vertically and the tests were repeated.

Then back to horizontal. For the next test, it had multiple dots evenly spaced and scrolling from one side to the other rapidly and I had to try to count them. The number didn’t matter, she said, just my eye movement doing so. Then I was to choose a dot at where it originated and follow it until it disappeared. 

Then she closed the lid on the goggles and had me look straight ahead for 10 seconds, then all the way to the right (I could feel the nystagmus when I did so), then back ahead, then all the way to the left (again, I could feel the nystagmus). She moved my head into several different positions, each time repeating this sequence, then moved my body into several different positions, again repeating the sequence with each. She adjusted the neck part of the table upward and repeated the testing.

Then came the weird part.

I heard an air compressor come on. She explained she would be sticking a tube into each ear, respectively, with cold then warm air. So right cold, left cold, right warm, left warm. Each exposure to the forced air would last 60 seconds and it would induce vertigo. She said the symptoms would resolve in a few seconds. I had to keep my eyes open the whole time (save natural blinking), and in between each test we would play a simple alphabet game to distract me from my vertigo.

In went the tube. The cold air felt so weird! And about 10 seconds in it hit me. I grabbed onto the table to keep from falling off the earth. I could definitely feel the nystagmus. Holy shit. She asked me for girls’ names starting with A, then B, then C, etc. I struggled a bit to concentrate but made it through. We got to M and a tiny light in the goggles turned on for me to look at and focus on to help stop the nystagmus. It was hard to focus on it at first, but it did help. I didn’t have any access to a clock, but it felt like it was about 2-3 minutes before we moved on. My vertigo stopped just in time...

On to the left side for cold air. And same thing, about 10 seconds in, BOOM! Oh shit! Clutching the table. The timer and air go off and she asks me for boys’ names starting with A, B, C... etc. I was more disoriented this time and struggled some, but made it through. This time took me longer to recover. Maybe 3-5 minutes?

Next came warm air in my right side. She said it would invoke the same reaction. The air starts and all 60 seconds go by... without vertigo. I didn’t know if this was a good or a bad thing. The timer went off, she pulled the tube out, and BOOM!!! Oh shit... this was worse than the other two combined! I thought I might throw up. She asked for city names starting with A, B, C... I struggled HARD with this one. I was so disoriented! I got to F and said “France... wait... that’s a country... shit... F... Franklinville. There’s probably a Franklinville somewhere... yeah...” and for G “Georgia. Wait, that’s a country too... and a state... G... I don’t know. I just don’t know.” This one was definitely longer to recover. Well over 5 minutes. I wasn’t completely recovered from it when it was time for the last one.

Thank god it was the last one. Jesus.

Warm air, left ear, and I had no idea if it would act like the cold and be 10 seconds in and zoom, or nothing until pull out and then holyshitzoom, or what. With 10 seconds to spare, my life got flipped turned upside down... I wildly grabbed for the wall with one hand and clutched the table with the other in a desperate attempt to stabilize myself. This time she had me count up by threes. “Oh dang it, why does it have to be math? I’m... crappy... at m... math...” I managed to slur. I could barely control my brain, and it was frightening. I heard the words coming out of my mouth and knew some numbers were wrong. It was as if there was a disconnect between my mouth and anything else. I repeated a few numbers. She finally had me stop. Thank god. The light came on in the goggles and I could barely focus on it. It almost made me feel worse to see it bouncing around so. It wasn’t, of course, my eyeballs were, but hey.

I felt my limbs go cold and my mouth started watering. My eyes teared up. I was going to vomit. I took a slow breath in to compose myself and quietly asked “If I have to vomit, where do I do so, please?” I could hear in her voice she was startled as she said, “Oh no! They just moved us into this room today and haven’t moved in a trash can or any bins! Eek! Try and hold it and I’ll see if I can find anything! Keep breathing deep like you have been!”

SOMEHOW I managed to not throw up. I’m amazed. But this is why they have you go NPO! My recovery time for the fourth one was substantially longer than the others. It was a much stronger reaction, too. I apologized for taking so long to recover and she told me it was perfectly fine, to take my time, and that she didn’t have anyone else scheduled that day. Again, estimating time, I probably lay there for a good 15-20 mins before feeling like I could turn on my side toward her. I took a chance opening my eyes and it was ok. 

She rolled back a little on her chair to come into my field of vision and discussed the findings with me.

“The good news is that your hearing is great and your ears are doing really well. Your right side is really close to being considered having a weakness, but it’s right on the border.” “Story of my life, doc. It doesn’t matter how bad I feel, I will test either within normal ranges or borderline. Ugh.” I said. “Well, your left ear is over-performing by about that same amount, so that tells us you may have some equilibrium issues since the ears are sending feedback to the brain at different rates, which can throw everything off.” Then she explained the nystagmus. “When I had you look all the way to the right or left, your eyes did something we call beating, a type of nystagmus.” She went on to explain that it was an abnormal reaction, indicating that the issue isn’t in my ears, but... my brain. She hesitated slightly as she said it. 

“I know it’s scary to hear!” she said apologetically. “Eh. Everything is controlled in the brain in one way or another, right? Besides, I’ve thought there was something askew up there for a while now.” I replied, keeping cool for her benefit. “That’s a good way to look at it!” she said; I could hear relief in her voice. “So we refer to it as a central processing issue. Basically, up in the brain. You need to get to a neurologist. I wish I knew more about it to tell you, but you do need to get referred to a neurologist. What’s interesting about this is that the patients who have this also tend to have a history of migraines.”

I’ve had those since I was 7. Huh.

She showed me a video of my eyes during the testing. Cool! I asked her for a copy of that video emailed to me. She said she will do so. She also said that it’ll take her a week or so to complete her report and send it to my PCP, but when it comes through, to see a neurologist. We talked about available neuro docs in the area.

By this time, my head was pounding (it started hurting at the first air test and progressed) and I took some Tylenol. I probably stayed in there with her for another 5-10 minutes chatting before she asked if I was OK to try standing. I said I was, and we carefully stood me up from the exam table. She walked me to the front door and I thanked her again and headed out. 

When I got to the parking lot and sat in my car, I allowed the shock to hit me.

“I have a problem in my fucking BRAIN....” I mused aloud, astonished. A million questions flooded my consciousness immediately, and I refused to allow myself to acknowledge or answer a single one of them. First things first... call Chris. 

He was asleep and I woke him. I chose not to tell him everything now; he would have bad dreams while I was on the road. I’d wait. Instead I asked him what to bring home for dinner. I then went shopping and got lunch and dinner and headed home. 

After eating, I allowed myself to think a little bit about what happened. It was time for copious amounts of research when I got home.

I got home and sunk onto the couch. Chris and I then talked about all that happened as he prepared dinner. I could tell he was startled but being cautious about letting himself react. 

Then he made a joke about it really actually being all in my head and we laughed. I love that he knows how to make me laugh when I need it the most. I have a feeling I’m going to need that in the coming days going through all of this.

[wendyswriting]

Could this be my Thing?

For a very long time, though I cannot recall precisely when I was first struck with this notion, I have had a firm notion in my mind that someThing is going to happen to me. I mean when I think of this Thing happening, I feel it to be as true as the fact that I am a female human named Wendy. 

To be more specific, I have this notion that I am going to go through a very big, scary, serious health event, like cancer or something, and it will be hard and scary, but I will ultimately survive it.

I also mentally associate my late Nana with this. I don’t know why... I’m thinking either my notion told me it would be something she dealt with, or she told me on a non-physical plane that I would go through it. 

I know, it sounds odd. But somehow it is something I can shrug at, because I know I will be OK in the end. 

I’ve told a few people this and have met varying responses including “No, you’re not going to have anything like that!” and “Well stop thinking you will and putting energy into it, or you WILL end up with cancer!”

Nope. Something WILL happen and I WILL survive. Period. I know like I know like I know. It’s an interesting feeling.

So now I wonder if I might be facing my Thing. I’ve had my fair share (if not more) of health issues. I have a growing collection of autoimmune diseases and have suffered from chronic fatigue and pain on an everyday basis since I was a teenager. And I had some medium-level freakouts about the most recent diagnosis of DDD and a confirmed diagnosis of fatty liver (that made me look at the link between that and psoriasis, which was scary), but this feels like it’s on a different level.

I’ve dealt with sporadic dizziness and vertigo for about 10 years now. I went to an ENT and was diagnosed with Meniere’s. Lived with it. This summer, it suddenly became acutely worse, and it was frightening me, but not enough to make me see my PCP about it - until it happened while I was driving. She referred me to an audiologist and put me on a new med for it. The med was amazing and brought me back to baseline sporadic dizzy and vertigo spells, so I didn’t pursue the audiologist appointment until she said my refill on the med was conditional upon completing this consultation.

So I went, we did hearing tests and caloric tests which is a mindfuck of a test that involves a machine blowing air into your ears that sends your brain into a tailspin, inducing vertigo and nystagmus. She had me wearing these VR-looking goggles that had a camera that traced my eye movement in response, because the eyes and ears are more connected than I ever thought they would be.

The testing SUCKED. It was shitty! It made me feel shitty! I had to grab the wall and exam table to keep from falling, though in reality I was laying perfectly still. During my recovery time, I was talking to the doc in an effort to distract myself from the horrible feelings induced while she was putting together her observations. What felt like about 15-20 minutes of recovery, we talked about her findings. 

She said the way my eyes reacted indicated an abnormal reaction, and she was clearly trying to gently break it to me that she doesn’t think I actually have Meniere’s and that the issue is actually inside my brain. She said it sounded really scary, she knew, but... I played it cool and told her “Eh! Everything is ultimately controlled in one way or another by the brain. To be honest, I’ve always felt like something was askew up there. And I figure you would have a great knowledge base of what Meniere’s does and does not look like!” 

On the inside, though, I was like... WTF?! Oh shit! In my fucking BRAIN?!

She said her report would take her a week or two to compile (shit - specialist reports usually take 24 hours!) but she REALLY wants me to have my PCP do a referral to a neurologist. We discussed options of specialists in the area since I drove 2½ hours to get to the office. 

When I was driving home, I was thinking about the possibility of something being actually physically wrong in my brain. More than the joking “Haha it really IS all in my head!”... it really IS. Holy shit. What IS this?

So, without having the specific names of reactions, I went to the task of researching like crazy. I found out what those reactions were and was fascinated to discover that neurology is so exact that they can pinpoint where in the brain a problem is based on presentation. Coooool! 

But also it could be a couple of not great things.

More about that later, as I have to wrap up and go. But... could this be my Thing?