Temerity Jane
30. 04. 2018

How are thiiiiiiings? This is how my things are: yesterday was my kid’s birthday. She’s been around a long time now, but she’s not as tall as me yet so I think I’ve still got some time with her. She IS trending on the 50th percentile for height, though, whereas I am slightly… not… that… so maybe not too long. I can almost still lift her. Sort of. Her feet don’t get very far off the ground. She’s quite long. She made me take her picture before she went to sleep the night before her birthday so she could compare how tall she got when she woke up 7. She’s more of an art kid, not so much science and math. Very alien to me. My husband is… well he’s not here right now but I’m sure he’s fine. Whenever he’s out of sight he manages to find his way to some ice cream, so yeah, I’m sure he’s fine. For me, I have had, like, a million specialist appointments lately, none of which were expected to find anything crazy, but I still had to be subjected to them just in CASE. I am FINALLY down to only two appointments on my calendar – my neurologist, who might as well be my primary care doctor for as often as I have to go there, and ophthalmology, but that one is a YEAR away, as is normal, after a weird period of “Oh shit I need to see you back here in 4 months instead” followed by my neurologist saying “Actually we need you to see optho tomorrow.” But as usual everything is fine and my neurological condition (one of them) has not yet begun to render me blind.

So this is the kind of bullshit I have been dealing with, ok. My neuro sends me to a vestibular specialist just to CHECK. Nothing major expected, and there was nothing and it was fine, EXCEPT the said, so you’ve got some abnormal structure in your right ear and you need to see an ENT (ANOTHER ENT, THE FIRST ONE BEING A WHOLE OTHER THING), and I said okay, well, does it cause the symptoms I’m here for? And they said no, and I said, is it affecting my hearing? And they said yeah, probably some conductive hearing loss. And I said but you JUST TODAY tested my hearing and said it’s in the perfectly normal actually pretty excellent range. And they said, well, still, perhaps it is less excellent than it could be. Anyway, that ended with both my neuro and my primary care doctor saying “so you’re supposed to see an ENT” and me being like “nah I’m not doing that” because I am SO DONE with medical invasions that are meant to do nothing but confirm normalcy, I am at the very end of my rope. I even am wearing a 30 day heart monitor right now to CONFIRM THAT MY HEART IS FINE so they can confirm something else neurological (except no, I fell asleep, and it started screeching for some reason so I ripped the batteries out and it fell behind the bed. It’s now a 29 day monitor.) ANYWAY the OTHER ENT visit was apparently because I have a mega deviated septum with bone spurs, but I asked them if it was DOING anything to me and they said no but we can still fix it and I was like the hell you will. I REMAIN DEVIATED.

ANYway, that brings me to last week. I had to go see my primary care doctor to get her to sign off on me getting a PA drivers license because while Phil was active duty military I was allowed to carry an expired license, but it is TOO expired for them to just hand me a new one at this point. So I go to that appointment and it’s just a physical (AT WHICH SHE DENIES MY REQUEST AND REVOKES MY DRIVING PRIVILEGES BUT I’VE MOVED ON TO BEING ANGRY ABOUT SOMETHING ELSE SO FORGET THAT PART) and I tell her hey, so, like a year ago, I found this tiny lump in my forearm and I thought I was hallucinating it, but over the last 6 months or so, it started to grow – are you still reading all this? – and I think it’s a lipoma like my husband had, but I guess if anything starts to grow you should bring it up to your doctor. Especially since it went from a size where I thought I was hallucinating it to the point that you can not only easily feel it, you can SEE it from the outside. And she’s like yeah, and feels it, and says it SEEMS like a lipoma but she’s going to order an ultrasound, which was today.

So I go to the stupid ultrasound and I’m already mad, because it’s just a dumb test to confirm something is normal and it is so 99% likely to be entirely normal. And if for any reason it appeared slightly ABnormal, I knew they were going to have to do further tests only to come up with the exact same conclusion and I am SO TIRED of the doctor. Anyway, the ultrasound dude looks at my arm and says yeah, I see that, and feels it and I said, “I think it’s a lipoma” and he goes “seems like, but let’s take a look” and he puts on the gel and he’s scanning and scanning, turning my arm and scanning and scanning, feeling the bump and finding the edges and scanning the edges, and I was looking at the screen thinking I saw it and it just looked like blackness to me, or very similar to when I was pregnant, but I am certain I am not pregnant at all, let alone pregnant in the arm.

So he’s looking and looking and he says, it’s not there. I can’t see it. And I’m like, excuse me? It’s there. And he’s like, I know, I can feel it and I can see it on your arm, but it is not on the scan at all. And I asked, is that weird? And he’s like, “uh, yeah, a bit.” And I said, but it’s a lipoma? And he said, well, no, because a lipoma would show up as a bright area right here. Then what is it? No idea. It’s absolutely indistinguishable from muscle fiber, there is no way to see where it starts and ends or how deep it is or how big it is. It is there, he felt it, he can SEE it, my doctor felt it and can see it, but it declines to show itself.


What happens next will depend on how much my doctor believes in CYA, I guess, and the tech mentioned both MRI and waiting 6 months to see if it decides to change texture and show itself. Personally, I am firmly in the waiting six months camp, because I am just. so. done. With everything. With all of this. NORMAL TESTS THAT ARE SUPPOSED TO JUST SHOW THAT SOMETHING IS NORMAL AS SUSPECTED BUT REFUSE TO BE NORMAL ENOUGH TO JUST DROP IT. OVER IT.

Anyway, I guess to cover everything I will also say that after six years of being mysteriously ill in ways I have sometimes described here and sometimes kept entirely to myself, I have a diagnosis, myalgic encephalomyelitis, which is something I’m not entirely convinced actually exists, like I know a lot of you will feel if you look it up, which you shouldn’t, because it’s boring. And I’m in a weird position where, like, I don’t think this is real? But at the same time it is the current title for my particular collection of symptoms. But it is a diagnosis of elimination, and it makes me feel like the attitude is “well we’ve hit a dead end so here, you have this thing that may or may not be real, and we can’t prove, and there’s no cure or real treatment, good luck to you,” and on one hand, ok, it’s convenient to say I have this thing, so the collection of symptoms is instantly understood, but on the other hand, it is like, come on, keep looking, I refuse to accept that in 2018 you’ve just come to a dead end with no further suggestions, and on the other other hand, it’s embarrassing and weird because it’s one of those conditions with a stigma, because EVEN I DON’T FULLY BELIEVE IT’S REAL, so why would anyone else, so you MUST be able to find something else because no one even believes in this and I don’t want to carry this label and never be taken seriously by doctors again, which you know is going to happen, if not all of the time, at least some of the time.

But what I can tell you is this, that while maybe the condition is real or it is not real, the symptoms are real, and telling me, “oh yeah, I get really tired sometimes, too” is NOT going to go over well with me, even though I will nod and smile and not get into a pain olympics situation with you. And if I have learned anything at all over the last six years, it is two things: you need, NEED to really push for yourself with doctors. I have a crippling fear of being seen as “that patient” or drug seeking even though I flat REFUSE narcotics on the regular. I want to be taken seriously and somehow that has perverted itself into the idea that if I just go along with everything doctors say and I’m not too loud or too whiny or too annoying, they’ll think I’m a “good” patient and know I’m not dicking them around, but you know what, sometimes that works and sometimes YOU GET NOWHERE FOR SIX YEARS.

And the other thing I’ve learned is that… you shouldn’t… hm. How to put this? Don’t make chronically ill people prove to you how sick they are. I don’t mean doctors, I mean the general you. Don’t tell them “but you look fine,” and put them in the awkward position of being like, “well, I’m actually not” and listing off to you how life is garbage, because that makes everyone feel like garbage. If someone you know is sick and seems to be living a normal life, let them. I don’t know how to better explain it. Don’t make me whine to you. Just let me be. If I appear happy and healthy and having a good time, well, good for me. What a great day. Just let it be a great day.

Okay, so, that’s it. What’s up with you?

11 responses to “The rundown of the last two years that actually only covers this week.”

  1. HereWeGoAJen says:

    Nothing much is up with me. I just bought three pairs of ridiculously overpriced pajamas and I’m eating some raspberry sorbet. It’s pretty good.

  2. Liz says:

    Well, last year was absolute crap so I am determined to make this year better by doing all the things I’ve been waiting to do “at the right time,” or “when we are ready,” like buying a house, getting a puppy, taking a vacation and it’s all happened/is happening and I’m running out of energy and resources to do anything else and the emotional trauma of last year is starting to catch up… so I am over all GOOD with a sizable helping of denial/avoidance. TMI?

  3. Julie says:

    CFS/ME fistbuuuuump! Also a whole pile of other things, but we won’t get into those. You didn’t mention the next bit after “but you don’t look sick,” which is the unhelp asinine advice people decide to give you that absolutely won’t help but totally cured their mother’s friend’s cousin’s kid’s teacher.

  4. Delicia says:

    Well, the neurologist was sure that I had a small early stage aneurysm (my mother died of a brain aneurysm at age 54) based on something he spotted on an MRA, so I got to go around for 6 months in constant fear of any headache being IT “oh, don’t worry, you’ll know if it bursts.. if you’re lucky, it’ll be a slow leak, and you’ll have the most blinding headache you’ve ever had and you should have time to call 911 and get to a hospital before you die”. Six month checkup and the neuro is like.. hum. well.. I don’t see it or anything, I think it was just a shadow on the previous one, you’re fine. Smart me DIDN’T tell my kids until after the fact just as an aside “haha, btw silly doctors!” so at least they weren’t freaked out for 6 months. so yay

  5. LeighTX says:

    I’m so sorry you don’t have a more definitive diagnosis after all this time. CFS is one of those invisible things like fibromyalgia or depression that people think is just in your head and you really CAN do stuff but you just don’t want to, and it’s so frustrating and hard to explain to people who’ve never lived it.

    Also I refuse to believe that Penny is 7, I’ve been reading your blog since before she was even a thought and it cannot possibly have been that long. Happy birthday to her!

  6. Kara says:

    I was guilt tripped into getting a physical, after the nurse at the CVS Minute Clinic told me my thyroid was too big (in December 2017). Of course, that turned out to be an actual thing, and after seeing a primary care doctor, an endocrinologist, and a surgeon, I got my thyroid removed two weeks ago (also, three neck ultrasounds and a biopsy on one of the nodes) Now I have the fun experience of trying to figure out what the correct dosage of thyroid medication will be for the rest of my life. And a lovely scar. I feel more exhausted at 4 PM every day that I have ever felt before in my life. Like my arms and legs are weighted with concrete.

  7. heidi says:

    Yay for things that may or may not be real and are really because no one really knows what it is in TWO THOUSAND AND frigging EIGHTEEN. (Not yay at all.) I’ve gotten the – it’s probably fibromyalgia from my docs but then they just say. eh. what are you going to do? Although recently one of them FINALLY got me an appointment with a rheumatologist. It’s just, they didn’t have an opening for 4 months. So, maybe we’ll know more come June. (And. it’s been about 15 years since all this shit started.) Is fibromyalgia real? I’m not sure. But, it is SOMETHING. so, I guess we may as well call it that.

    Hope you are doing well and get a break from the appointments for a while.

  8. Kate says:

    I wrote a whole big comment that was basically “Yeah, all of that” so I deleted it. Although I would like to add, sometimes what I am considering a good day doesn’t look like what *you* might consider a good day. Don’t make me defend my good day-ness to you and in the process rehash all of the things that make the bad days bad while ALSO pointing out the difference between what my good days look like versus yours. Just let me say “I’m having a good day!” and let me be…

  9. Suzanne says:

    I was so excited to see your blog post pop up in my feed reader!! Very glad for the post, very sorry to hear about all the frustrating and endless medical stuff. The invisible visible lump sounds so mysterious and infuriating! What a jerk, to fail to present itself!

    What’s up over here is that I have an almost five year old, which is CRAZY to me. So I can only imagine the suspicious squinting you give to your own child. SEVEN? That hardly seems possible. It was just yesterday I was reading posts about tiny infant Penny!

  10. Farrell says:

    So good to hear from you! I’m glad you’re being your own advocate but it’s frustrating not to have “real” answers and just guesses.

  11. Riverter says:

    So glad your blog is back, I have been following your family ever since you showed up on BRK back in the day. Loved your writing style and stories, was sad when your site when down for a period of time so glad it’s back.