Tag: Fibromyalgia

Brain Tumor

A Thing I Did While Growing a Brain Tumor

Emily Suess6 Comments

summerfest dmb

Facebook tells me that on this day three years ago, Dan and I attended the Dave Matthews Band concert at Summerfest in Milwaukee. I remember it well. It was raining and only like 50° F outside. We could see our breath.

In July.

Fuckin’ Milwaukee, guys.

Anyway, we had lawn tickets but no chairs or blankets, because we weren’t anticipating the rain or the cold, slippery grass.  So I stood for the entire show. For HOURS. I wiggled and danced for a bit, walked around a little. Then stood still. Then shifted my weight from one leg to another. Then started the routine all over again.

At the end of the concert, we had to walk back to the car. My legs were tired. The car was parked several blocks away, and I remember saying to Dan, “My legs feel weird. Like I can’t walk. I don’t know if I can make it all the way to the car.”

I had no clue what was happening to me at that time. I just thought it was exhaustion and that I was really and terribly out of shape. (Even though my height, weight, and activity levels were still leaning toward the decent side of healthy because I’m stubborn.)

At that point, I had already started seeing doctors about weakness and fatigue and a bizarre sort of limp that came and went, but I wouldn’t get a fibromyalgia diagnosis for about three more months.

I wouldn’t learn I had a brain tumor for a couple more years.

I did make it to the car without aid that night. But it was hard, and I remember stifling fears that something was really wrong with me. I remember plopping in the passenger seat and sort of lifting a leg into the car because it just wouldn’t.

Anyway, I wanted to take a moment this morning to say I’ve done a lot of really hard things with a tumor in my head—a tumor that I knew nothing about. Wonder what else I can do now that I know and have doctors that know how to fight it.

Brain Tumor

Misdiagnosis: From Fibromyalgia to Brain Tumor

Emily Suess7 Comments

16832198_10102660054845834_6014347965752901571_nWhew! The past 72 hours have been utter shit for me. I’d explain why, but I’m going to just wave my Tumor! sign and leave it at that. There’s something else I want to write about now.

Did you know that May is Brain Cancer Awareness Month and Fibromyalgia Awareness Month? (Actually, May is the awareness month for a lot of things, but these two things have been just about my entire life since October 2014, so they’re getting top billing on my blog this May Day.)

I mentioned in a previous post that I believe fibromyalgia was a misdiagnosis for me as opposed to a comorbidity. As I have discussed many times with family and friends, I am mostly overjoyed to have an accurate diagnosis and a real plan to get better.

However.

There’s a special kind of emotional baggage I picked up on this path, and the only way I know to heal from it is to put it out in the universe by sharing it on my blog—where my family, friends, and even complete strangers get to read some of my most intimate thoughts.

I have no qualms about oversharing when it comes to my well-being.

So here’s the deal. On February 2, I had fibromyalgia. Then on February 3, I had a six-centimeter tumor on my brain stem.

On February 2 the general consensus among my doctors was that I wasn’t eating right or exercising enough. If I were, I’d experience improvement and maybe even remission of some of my symptoms.

On February 3 the general consensus among my doctors was “Holy, shit. You shouldn’t be able to do that” or “No wonder your body can’t walk, breathe, sleep, digest, or stabilize your heart rate and blood pressure like a healthy person.”

At first I was like, damn I am one tough cookie.

And then I was like, wait just a goddamn minute here.

I want to point out that from a purely physical experience, there was no discernible difference for me between February 2 to February 3*—even though in that 24 hours, my list of symptoms was suddenly more than validated.

Medical professionals (not speaking of specific doctors right now, just medical pros as a community) who were previously dismissive of my pain were suddenly losing their shit over how believable my reports of chronic pain and disability were.

And this is a point that I really want to drive home, so I’m going to repeat it:

The physical experience of living inside this tired, broken body didn’t change one iota for me in that time.

Still, somehow I went from being a whining, complaining exaggerator with two X-chromosomes to a human being who really had been experiencing unrelenting level-eight pain for TWO AND A HALF FUCKING YEARS.

charlie_brown_pain_scale

(My Spoonies are grabbing tissues right now, they are empathizing so hard.)

(Others might not quite understand just how much emotional damage was done. That’s okay.)

It makes me angry that I wasn’t taken seriously. It makes me sad that treatment (and possibly relief) could have come just a little bit sooner for me, but instead I spent months homebound.

The lazy-ass rheumatologist that was a little too eager to diagnose me with fibromyalgia in 2014 fought me over my symptoms and complaints of weight gain, insisting that I wasn’t exercising enough.

When I told him that I’d been tracking my steps, walking to and from work, walking three laps at the park after work every night, and using my FitDesk and hand weights at home and was experiencing physical decline instead of improvement, his response was “Well, you need to start out slower and build up.”

SERIOUSLY?

That’s all the motherfucker had. I must have been doing it wrong.

Now that I have proof of this brain tumor and I’m recovering from surgery, chemotherapy, and radiation therapy, I hear admonishments not to “overdo” when I tell the doctors and nurses that I’m walking without mobility aids or putting in 30 minutes (on the lowest resistance setting, for the love of god) on my FitDesk as I try to recover.

If you don’t immediately know why both of these experiences fill me with boiling rage, I’ll tell you: NEITHER VALIDATES THAT I KNOW THE PHYSICAL LIMITS OF MY OWN DAMN BODY.

And yeah, the anger that comes with that weasels its way into my waking hours from time to time. You got a problem with that?

*I implore you to think about this before you accuse someone with a fibromylagia diagnosis of being an attention-seeker, a pill popper, or a conjurer of fake maladies.

Brain Tumor

Emily Answers Your Brain Tumor Related FAQs

Emily Suess1 Comment

recoveryOMG! I just heard. How are you?

The answer to this one changes every 5 to 30 seconds. You know that graphic about recovery not being a straight line? That is applicable to just about everything in life, and medical procedures are no exception. I’m glad to report that after 71 days away, I am at home in Urbana. The overall trend is toward “better and better” but I have my days where it seems like everything sucks and I’m taking steps backward. I’m not shy about griping during those moments. I promise to let you know when things are bad and I need a little cheerleading.

Are you done with radiation and chemotherapy?

Sort of? The radiation is done unless future MRIs indicate there’s a need to zap the tumor again. Chemotherapy and I are, as Ross might say, on a break. There will be more Temodar—brain cancer chemotherapy in convenient pill form—in my future, but it will only be once a week every month. (One week on, three weeks off, lather, rinse, repeat.)

I imagine that my body will tolerate that schedule much better than the initial chemotherapy regimen, which was every freaking day for five weeks. Right now, doctors are saying to expect to do the one-week-a-month plan for 6 to 12 more months. Actual duration will depend on how the tumor responds and how the rest of my body tolerates continued treatments. You know, my mileage may vary and stuff.

I want to help. What can I do?

  • Tell me jokes. Laughter is a great distraction.
  • Carry on about your business like things are normal. When someone tweets how miserable their allergies are making them feel, I am not thinking “Yeah, but I have cancer. Count your blessings.” Rather I am thinking, “Better you than me, sucker!”
  • Donate to my YouCaring fundraiser. But only if you can. My medical bills are piling up, and as of today (4/24/17) I’m preparing for an appeals battle with my health insurance provider. They have denied a claim that exceeds $100,000 for the genetic testing that determined the best treatment course for my tumor. I’m not adjusting my fundraising goal, however, until I know for sure I’ve been screwed. I could win the appeal. Right?

What about the Fibromylagia diagnosis?

It’s still on my medical records as a thing. But my opinion, knowing what I know now, is that the rheumatologist who diagnosed me with it in late 2014 was lazy and just fucking WRONG. My thoughts on this topic are pretty complex, however, and I plan to do a more in-depth post of my experience. For now, just know that if you troll or harass anyone diagnosed with fibro I will cut you. It’s real.

You went to St. Louis for treatment?

Yes, at the recommendation of my primary physician (I will praise her more in a future post) I went to Barnes-Jewish Hospital for formal diagnosis and treatment. The hospital campus includes Washington University Physicians and Siteman Cancer Center. And every one of the people I was in contact with there was absolutely phenomenal—ER admissions staff, nurses, doctors, transport staff, nurse assistants, more doctors, residents, interns, food and nutrition employees, housekeeping, valet staff, radiation oncology techs, MRI techs, CT techs. I am seriously getting a little teary thinking about how well I was treated and how much confidence I had in the people taking care of me. I don’t know any of their salaries, but I know that none of them are making what they are worth.

 

Fibromyalgia

Fibromyalgia Update: Iron, Sleep Study, Nexium

Emily Suess2 Comments

fibromyalgia quote.PNG

I haven’t been feeling well lately. I know, right? You are so surprised.

Thought I’d follow up with my progress in regards to the iron supplements and my fibromyalgia. Which is a pretty easy task, because there is no more progress to report. I’m still taking the supplements, and the burning in my legs and feet is less frequent. But the initial shot of energy and hope I had during that first week—hope that this was what was wrong with me—has all but completely fizzled.

I was anticipating a call from the sleep specialist this week to schedule the sleep study, but it didn’t happen. (The sleep study requires pre-auth from my insurance company, so I’m guessing there’s some negligence or outright denial of coverage on the part of my insurance provider.)

Whatever. I’m too drained to check on it. It’ll either happen or it won’t.

Nothing is happening as far as my getting into the MS Center at Illinois Neurological Institute either. My last move was to clarify whether my primary doctor’s office had simply put in a referral to my insurance (which is not required) or whether they had communicated with INI to start transferring my records to them (which is required).

Of course, my primary doctor’s office hasn’t responded to that question, which I asked nearly two weeks ago. I’m feeling more and more like my doctor and the nurse practitioner there just want me to wait for another scary episode and go to emergency. Proactive healthcare in this country is a fucking farce. It essentially consists of flu shots and colonoscopies after age 50.

If there’s one bright spot, it’s that I haven’t taken Nexium in 11 days, because I haven’t needed it. Doing without it hasn’t completely stopped my dizziness, but it’s lower. I feel like falling isn’t as likely right now. So there’s that.

 

Fibromyalgia

More Medical Tests: Could I Have Sleep Apnea?

Emily Suess2 Comments

sleep-studyThree days ago, I was so close to canceling my sleep consult appointment. Like finger-on-the-green-call-icon close.

I generally face anxiety for three days prior to any scheduled outing. It’s not that I have genuine phobias about people or doctors or medical facilities. It’s just that it’s so hard. I mean, have we talked about how I get dizzy trying to brush my teeth yet? So, yeah. I get worked up about errand and appointment struggles days before I actually have to do them.

I didn’t cancel the appointment though—despite fretting it would be another dead end and waste of spoons—and I’m mostly glad I didn’t.

For one thing, when we got to the parking garage elevators, there were two hospital wheelchairs waiting. I was almost giddy; thought I’d have to make it all the way to the main lobby before landing one. But there was a red one and a blue one right in front of me. The wheelchair version of Take a Penny, Leave a Penny.

“Dan, will you push me in one of these?”

“Hop in!”

It was actually kind of fun. Like back in the day when Dan would take the doors off his Jeep and drive us in circles around the roundabout at the end of our street.

Instead of my usual doc visit blood pressure (in the area of 140/90-something), I was a reasonably stressed 126/88.

***

The nurse practitioner I saw today is recommending me for the on-site sleep study. I don’t know when that will happen yet, because insurance and pre-authorization and blah, blah, blah. But she was optimistic the first study could happen within the next month or so.

Parts of the Sleep Study

  • Initial Consult (Did that today.)
  • Sleep Study 1: Stay overnight hooked up to wires to determine if I have apnea and or RLS/limb movement.
  • Sleep Study 2: Happens if Study 1 determines I have apnea. They’ll fit me for a CPAP and document whether it’s helping.
  • Follow-up Consult

***

 My fatigue has gone from a 10 to about an 8—which is still shitty, but any improvement is welcome when you’re chronic—and that’s improved my mood. I even had a positive thought: What if I do have sleep apnea and actually getting oxygen through my airways at night fixes everything?

Time will tell, I guess.

Fibromyalgia

Watching Shit Burn

Emily Suess1 Comment
house-on-fire
Not My House. Just Thought It Looked Dramatic.

Last night I had all the anxiety. All of it.

Will I have to go to the ER before I get my appointment at the MS Center? How will they get my records before I’m an actual patient? Will they arrive and get lost because no one knows who I am or why they’re being sent?

Who are you kidding, self? No one is even working on your records.

Should I keep my sleep consult appointment on Wednesday? I already have to lean on the counter just to brush my teeth.  I don’t want to walk from the parking garage to the doctor’s office. I’m not sure I can do it, whether I want to or not.

I feel like I can’t breathe.

What if it is MS?

What if it’s not MS?

What if I don’t ever get better?

 

***

Last night Dan was working on a little project for me: removing, washing, drying, and replacing the covers we keep on our living room furniture to protect the upholstery from Boomer and Izzy.

Putting them back on required moving the couch and love seat. At one point he bumped the lamp on the sofa table, knocking it to the floor. The shade came off, the bulb broke. And then… the broken light bulb started smoking.

“I need you to unplug the lamp!” Dan said.

“OK!” I was sitting right next to the power strip where it was plugged in, but I couldn’t reach it. I made efforts to get out of my seat. I grunted. I rocked myself forward trying to use momentum to get me off the couch, knowing that once I was upright, I’d still have to turn 90 degrees and recover my balance. Then I’d have to bend over and, using my weak arms, try to pull the lamp cord out of the outlet.

“Fuck. Nevermind, I’ll get it.”

I had only managed to scoot myself closer to the edge of my seat. I wasn’t anywhere close to standing when Dan realized it would be faster for him to get up off the floor and walk over to the outlet.

Crisis averted. Nothing caught on fire. But I was smacked by the depressing reality that I can’t do anything and I certainly can’t do anything quickly.

I’m officially sick and a burden.

Fibromyalgia

A Different Kind of Meltdown: Heat and Fatigue

Emily SuessLeave a comment
hot-bath
LIES!!!

My parents have a garden tub, so while we were visiting them at Christmas I decided I was going to take full advantage. Traveling can be so stressful. That’s one of the reasons we stopped at Walgreen’s the day before leaving Urbana; I wanted to pick up a bag of Dr. Teal’s Epsom salts to soothe my achy muscles.

I was in the tub for about 15 minutes when I was overcome with fatigue. The bath had worked to soothe the muscles in my legs a little too well. And by that I mean I couldn’t get myself out of the tub.

I drained the water completely and tried to stand, but I couldn’t even get my feet planted under me, let alone stand on them. Next I tried the grab bar. Maybe a combination of standing and pulling with my arms would do the trick.

Nope.

And being stuck in the bathtub was getting me all panicky, which would only undo the relaxation I was trying to achieve. I grabbed my cell phone and texted Dan, who was reading in the living room.

“Help.”

***

That wasn’t the first time I’d tried to take a bath and been unable to get out of the damn thing myself. A couple of months earlier, it had happened at home.

We have a terrible old bathroom with no grab bars and shower doors that are decent enough to keep me steady, but no way is there any chance in hell they’d hold up to me trying to pull myself up with them.

Dan tried a couple of different methods. “Here, grab my hands and I’ll pull.”

Nope.

“What if…”

“That’s not going to work.” I started tearing up and my chin quivered and got pocked with pout dimples. I tried to take deep breaths to ward of panic and hyperventilation, but I was so drained and fatigued I couldn’t even suck in a big breath. I was hunched over, without even the strength to straighten my spine.

“There’s a way to do this,” I said, “I just need to think how we can get me out of here without breaking me or you, or tearing out the shower doors.”

After a few minutes, I had it. Dan stood behind me in the tub, hooked his arms under my pits, and lifted. Once my legs were under me, I could stand on them. (Though my knees had to be locked in hyperextension to keep me from crumpling.)

***

Before I got in the bath at Mom and Dad’s, I told Dan, “Keep your phone handy. I might need a rescue crane.”

***

I already knew that people who have multiple sclerosis (MS) need to avoid the heat. So—you guessed it—I went Googling. Back in the day, doctors would actually use a hot bath test to diagnose MS! Holy shit!

“In the 19th and early 20th centuries, the effects of heat on people with MS were used in the diagnosis of the condition. The hot bath test involved lying in a bath of warm water. If this caused or worsened neurological symptoms, it was taken as evidence that the person had multiple sclerosis.”

Most of what I’ve read says that the heat from the bath causes a temporary worsening of symptoms, but someone in a forum mentioned the debilitating effects could become permanent. Um, even if it’s a gross exaggeration of the facts, no more baths for me.

This heat intolerance thing may also explain why I can just barely function after a shower and have to lie down on my bed for at least 30 minutes