Brain Tumor

Downs and Ups

Down

While checking in to my hometown clinic for standard chemotherapy blood work last Monday (with my month-old Illinois Blue Cross Blue Shield ACA marketplace insurance), I learned that medical services at Carle are not covered by my plan.

That includes visiting my primary care physician—whom I really need to fill in on my progress—and getting the physical and occupational therapy my oncologist prescribed.

My Washington University/Barnes-Jewish Hospital doctors (in freaking Missouri!) are on the plan, and that’s not insignificant—but what the hell? How does that make any sense?

Up

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On Saturday, I received this little letter in the mail notifying me that the government agrees that I am, in fact, disabled and qualify for disability benefits. This is a relief, because unlike the LTD benefits I wrote about earlier, I can get SSDI for longer than 12 months.

Down

The official-ness of being on SSDI makes me a little sad too, though. I don’t imagine I really have to explain why.

Unfortunately, disability benefits don’t even come close to covering living expenses for the two of us, let alone make it possible to pay off mounting medical bills. (I was billed more than $14,000 for my ER visits on June 7 and 8. I can’t even.)

But whatever. Blood and turnips, bitches.

Up

However, now that I’m officially qualified for SSDI, it might be easier to find additional financial assistance on the hospital bills. I’ll start making those phone calls as soon as I’ve got the spoons.

 

Brain Tumor

Weekend Update

Dan at the Dentist

toothThe dentist mailed us an estimate for Dan’s dental work. While it needs to be handled sooner rather than later, it is thankfully not the catastrophic emergency I was worrying about. The work needs to be done in three phases:

Phase I: $584
Phase II: $584
Phase III: $105

That’s a grand total of $1,273. Once we have raised enough to start Phase I, he’ll get it on the books. If you’d like to help us cover expenses, please consider sharing a link to our fundraiser campaign: Help Emily Suess Pay Medical Expenses for a Brain Tumor. (The site tells me every share can help raise another $37.)

Next Steps for My SSI and SSDI Applications

US-SocialSecurityAdmin-SealA wonderfully helpful woman at the Social Security Administration office in Effingham, Illinois called me earlier this week, because the Champaign office is backlogged and Effingham staff are helping out.

My initial application—which I completed online—was to see whether or not I qualify for SSI (income-based assistance, as in “we have none”) and SSDI (disability insurance). Do all the applying in one shot, you know.

“Can you tell me the approximate balances of any checking and savings accounts you have?” she asked.

I gave her the estimates, and she let me know that I have too much money in my savings account for the income-based assistance. (I won’t after paying September’s property tax installment, so I can ask them to fire off my application at that time, if I’m still waiting on an SSDI ruling.)

Before telling me that my application was being sent off to Springfield, IL for review and denial/approval, she helped me clarify my answers. (Seriously, some of the application questions are ambiguous and could be interpreted at least six different ways.)

My Current Mood

thumbs up emojiI’m doing very well, all things considered. While I struggle to complete activities I took for granted 10 years ago, I am content with the dynamic nature of my abilities and disabilities. I wake up in the morning thinking to myself, Even if this is all I am capable of accomplishing for the next 20 years. I can do that. And be happy.

I know not every day can be like that. And that’s okay too.

Fibromyalgia

How I Got My Panties in a Wad

hanes-underwearNew game plan: get my primary doctor to order an MRI (or get me in the door of a doctor who can and will).

Getting into the MS Center does not seem likely at this point. That’s primarily because as a sick person, I don’t have the energy and resources I need to force the issue. My insurance lets me see whatever doctors I want, but getting my records to Peoria? I might as well try to send my test results to Mars.

I still work full time. There are spoons left for nothing else. And my physical abilities continue to decline.

I don’t totally give up, but I do give up a little. You know what I mean?

***

I was feeling slightly better there for a couple of days, and I had almost decided that ruling out MS was just going to waste me time and money. But then I got slammed with another flare up of symptoms.

Last night I took a shower, but got two toes stuck in the leg hole of my underwear. I couldn’t get my leg pushed through the opening and pull them up and I couldn’t free my toes.

I also couldn’t lift my leg out of the underwear to reverse course and start over. Defeated, I just stood with one hand on the shower door and one hand on my tangled up Hanes and started crying. I was about 30 seconds from collapsing due to exhaustion when Dan rescued me from my self-pity.

***

My vertigo came back with a vengeance, despite the fact that I haven’t taken (or needed) a Nexium in 15 days. So, Nexium apparently isn’t my problem. Still don’t have any plans to continue taking it unless my GERD rears its ugly head again.

***

My sleep studies are scheduled to start at the end of March. I’m confident they’ll find nothing, because no tests ever find anything.

Fibromyalgia

Let Me Introduce You to My Fibromyalgia

This is my fibromyalgia. There are many like it, but this one is mine.

Fibromyalgia is typically defined as “a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.” I have found this definition particularly useless when trying to explain my life to friends and family, so this is my attempt to compile an exhaustive list of what my life is like with fibro*.

I was diagnosed by a rheumatologist** about five months after my first complaints of muscle weakness and generalized, on-going pain. On a questionnaire, I answered questions about my sleep. On the same form, I was asked to shade in the parts on the human body that hurt.

“I see you shaded in your entire body, front and back,” the doctor said.

fibromyalgia-trigger-pointsAnd then he pressed on seemingly random areas of my body. The pain was so intense my knees buckled and I cried out in the exam room. That was the day I learned about trigger points—the day I realized I could actually hurt worse. The day someone induced my first honest-to-god fibromyalgia flare up.

What follows is a list of my symptoms. Some of them may more accurately be described as side effects from medicines I take, but I generally just lump them all in for two reasons: 1) I wouldn’t be taking the medicines if not for fibromyalgia, and 2) even my doctors can’t distinguish what’s primary and what’s secondary and what’s side effect.

  • Dizziness
  • Feeling faint
  • Elevated heart rate
  • Muscle weakness
  • Muscle cramps
  • Muscle knots (trigger points)
  • Muscles aches
  • Muscle stiffness
  • Limited range of motion (particularly in my neck and shoulders)
  • Gait problems
  • Falling
  • Widespread nerve pain
  • Joint pain
  • Swelling in hands and feet
  • Burning sensations in hands, feet, and legs
  • Itching sensations
  • Cold and numb sensations on face and nose
  • IBS-D
  • IBS-C
  • Migraines
  • Chronic headaches
  • Vitamin D deficiency
  • Malnutrition
  • Dry mouth
  • Dry eyes
  • Abnormal breathing (catching my breath with no apparent cause)
  • Hiccups after eating or bending over
  • High blood pressure that fluctuates with pain levels
  • Hypersensitivity to light, sound, smells, touch, tastes
  • Waking ranndomly to pounding heart, increased respiration (like my fight-or-flight kicked into overdrive for no other reason than it wanted to)
  • GERD
  • Fatigue
  • Weight gain
  • Nausea
  • TMJ
  • Anxiety
  • Low body temperature (usually around 97, at 99 I feel feverish)
  • Sensitivity to medications
  • Reduced (non-existent, if I’m honest) exercise tolerance
  • Brain fog (crappy short-term memory, inability to recall words, inability to multi-task without getting completely derailed)
  • Temperature sensitivity (both cold and hot)

Some of these things are constant, and some of them come and go. Obviously some have a greater impact on my disability than others.

I’m probably leaving stuff out because I can’t brain.

Some of these are mitigated by drugs (the IBS-D, for example). The only thing we have been able to stop long-term so far is the IBS-D. God, that’s depressing.

Anyway, I think Dr. Ginerva Liptan describes the mechanism of fibromyalgia pretty well in her book, The Fibro Manual.

fibromyalgia

Got questions? Ask away.


*Not everyone with a fibromyalgia diagnosis experiences the same things. In fact, though there are many similarities among patients, I’d say no two cases are exactly alike.

**As I’ve written in prior posts, my relationship with the acceptance of this diagnosis is best described as on-again, off-again.

Fibromyalgia

All Good Things Must Come to an End, All Bad Things Can Just Continue as Usual

mehWelp, on Monday I go back to work. My medically induced vacation hasn’t been as helpful as I’d hoped. But if I’m obligated to find a bright side, I guess I’m glad I didn’t have to pretend to be OK for three weeks.

The amount of pretending and ignoring it takes to get through an 8-hour day when you’re struggling to lift a fork to your mouth or open a bottle of Gatorade is hard to explain. It’s crippling, it’s depressing, and it’s scary.

***

It was my worst flare up to date that prompted me to go back to my doctor on September 29 and spend a tearful 40 minutes confronting my disability.

In that first full week off, I learned that gabapentin is not a drug that’s going to get me back on my feet. The night terrors and lost sleep I experienced on that junk instead set me back weeks, maybe months.

I quit taking it after waking from one of many nightmares to find I couldn’t move my limbs for a few moments. Immediately after I stopped taking it, I went from being scared the drug was going to permanently break my brain to worrying that my doctor was going to react negatively to my “non-compliance.”

***

Without much to keep the flare from snowballing, I spent the second week in more pain than usual. I honestly don’t remember much about it, except that when I went back to the doctor for a med check she was OK with me stopping the gabapentin and wanted to me to up my nortriptyline dosage to 20 mg at bedtime. Getting restorative sleep needed to be the priority.

***

Holy shit, have I ever slept since that appointment. Here’s the sleep I logged using FibroMapp for the first 7 days at 20 mg:

Saturday 10/14: 10 hours
Sunday 10/15: 18 hours
Monday 10/16: 9 hours
Tuesday 10/17: 11 hours
Wednesday 10/18: 10 hours
Thursday 10/20: 7 hours

The longest sleeps include daytime naps at moments when I just couldn’t keep my eyes open another second—in case you were wondering. On all 7 days, I spent my waking hours in bed, getting up only to go to the bathroom or take a shower or grab a Gatorade from the kitchen.

Dan cooked all my meals, washed and folded all the laundry, took care of the pets, shopped, rescued me from the bathtub, vacuumed, washed all the dishes, ran errands, picked up my prescriptions, met with the gutter guy, and plunged the toilets when our drains backed up. He even helped me get my shirt over my head because my arms were so weak I couldn’t lift them over my head.

***

So here I am at the end of my third week off of work, a little bummed and a lot miffed that I haven’t made any progress. I used up PTO and short-term disability and have nothing at all to show for it except a new walking cane, more medical bills, and a half-used bottle of gabapentin.

Fibromyalgia

My Medically Induced Vacation: Day 1

2016-10-03-16-31-58
I’m off work for the next two weeks while I try to navigate my new disabled life and continue evaluating the effectiveness of the Gabapentin my doctor prescribed.

It’s not really a vacation at all, and it sucks that this is how I’m blowing my PTO. But a great deal more of this life is out of my control than I ever imagined would be when I was a young(er) adult. I’m learning to accept that, but not without a nice, ridiculous internal struggle first.

***

My itinerary for today included three things:

  1. Call the vet to secure Boomer’s boarding reservation for later in the month.
  2. Buy a mobility aid.
  3. Rest.

Check, check, and check.

And, yes, I do have to trick myself into resting by pretending someone’s life depends on it. Huh. I guess that life would be mine, come to think of it.

***

We got my cane at Walmart. God bless them, the thing was right inside the door, and I got to test it out while we walked around, smelled the pumpkin spice candles, and gasped at the ungodly price of area rugs.

$11.87. That’s what this institutional black walking cane cost me. They had some more decorative stuff available, but nothing I saw (even online) suited me. I promised myself I’d pimp my ride with stickers and streamers and other accessories in the future. What mattered most was achieving upright stability.

Much as I love Dan, I hate hanging on his arm all the time. As an accessory, he just doesn’t coordinate with my independent streak.

After we paid, Dan handed the cane back to me. “Ready to go, Grandma?” he asked.

“I’m going to need you to take a ‘Get off my lawn’ pic of me waving my cane in the air when we get home,” I laughed.

“Consider it done.”

***

I am very slowly coming to terms with how I look, but it is not easy. If I had aged at a normal pace and gained weight gradually, it might not be so shocking to see pictures of myself or catch a glimpse in a mirror. But I currently look at myself and think, Who the hell is thatDoesn’t seem to matter that I’ve looked this way for two years now.

I am in the grieving stage of chronic illness. It’s harder than denial, which is probably why I hung out there so long.