Fibromyalgia

Brain Tumor Update for March 21, 201

Stuff that still tastes decent, for the record:

Baked potato
Scrambled eggs
Vanilla ice cream
Yogurt
Bananas
Banana bread
Chicken
Sweet tea
Peanut butter
Green smoothies
Cinnamon raisin toast
French fries
Oreos
Pretzels

The radiation treatments are giving me canker sores and burning the skin around my scar. I have lotion for the burns and all kinds of stuff for dry mouth, so I do get some relief. I’m diligent about avoiding thrush, which is a common complication on radiation. (I had it when I had my tonsils out years ago and it. was. horrendous.)

In other news, I’m 6 hours past today’s appointment and mom says she can still see waffling from my radiation mask. That sucker is so damn tight now.

Talked to the radiation oncologist about the swelling and my worsening headaches. He says one option to reduce the headaches is to double my steroid dose. Unfortunately, that would likely also up my swelling, which is not exactly detrimental to my health, but it is really uncomfortable and makes it hard to get around.

For now, I’m just going to keep on keeping on until it becomes abundantly clear that I need to up the steroids or find another option.

Adding a picture of some dude getting head radiation so you can kinda get a feel for what I do mon-fri, and how the mask works. It keeps me from moving and keeps them from accidentally zapping part of my brain stem, which I really, really need.

17457309_10102725286935204_2631908762749500327_n

Brain Tumor · Fibromyalgia

February 27 at 10:53am

Dan’s on his way to Urbana for a couple of days to take care of some things on the homestead. I am allowed to travel, but it’s just too hard. I am very sensitive to light and sound the past few days. So staying put with mom & dad and continuing to heal up after surgery.

Made an attempt to Google my tumor type last night and got kind of panicky. So I went back to playing Farm Heroes Saga. Dan went over the images with one of my docs when I was out of the room. Not quite ready for that either. There are counselors I can talk to when I’m ready. But I’m not. Yet.

Starting to have really bizarre dreams at night. Tumor? Meds? Subconscious processing reality? No idea.

Still feel better than I did before the biopsy. Which has me kind of amazed. I knew things were bad, but you kind of lose track when all the bad stuff just piles on.

Anyway, enjoying my “vacation” from doctors & treatment while I can.

Fibromyalgia

Something’s Squeezing Me, but from the Inside

symptom-checker

Sunday night was…weird. I went to bed early because I was feeling…weird.

Dan came to check on me. “What’s up. You doing okay?”

“No.”

“Well, what’s wrong?”

“I don’t know. I just feel really strange. Like something’s squeezing me, but from the inside. Everything’s heavy. I feel like I can’t breathe.”

Dan tried to push me for clarification, but I had nothing. The sensations were new, and I couldn’t determine whether I was having some kind of panic attack or my worst flare up to date.

Am I panicking? Or am I just so weak I my muscles won’t expand enough for a solid breath?

I could tell he wasn’t sure how to help. “I’ve just been lying here trying to decide if this is worthy of an ER visit, but I don’t figure there’s much point in going if I can’t even explain what’s going on, you know?”

“Yeah.”

Spoonies learn quickly that ER visits are  borderline pointless. Unless you can show the doctor a gunshot wound or… Well, it’s pretty easy to talk yourself out of going. They’re expensive as hell, and the doctor you end up with is a total crap shoot.

Like the one who gave me Mylanta and sent me home when I had a gallstone he didn’t bother to check for. That waste of my time cost me thousands of dollars and several more months of excruciating pain.

***

Ever since my doctor’s appointment on Friday, I’ve been getting weaker and weaker. And it’s not like I had all kinds of strength to start with. In fact, during the strength test part of the visit, she asked me to grab her fingers and squeeze them as hard as I could. I gripped the index and middle fingers of each of her hands and gave it everything I had.

I was thinking to myself, based on my perceived level of exertion, that she was going to say uncle. I pinched up my face and waited for her to tell me to let go.

Instead, she said, “No, as hard as you can.”

***

When I wake up in the mornings, my spasms are worse. I yawn repeatedly, and with each yawn my entire body tenses up from head to toe. The back of my right ear and earlobe are numb. My forearms and hands are mostly numb, but painfully so.

Whatever that means. How is it possible to be in pain and numb at the same time?

Talking triggers yawns, which triggers more head-to-toe spasms. Getting up from the couch—when I can manage to stand up—triggers head-to-toe spams too. I have to wait for the muscle contractions to stop.

Imagine you’re angry and making a fist. And you’re so angry that your arm and fist shakes in tight, tremor-like contractions until you let go of the fist.

That’s what I’m calling a spasm. Only it’s all over my body. And I can’t just think let go, and my body magically lets go. It’ll let go when it damn well feels like it, and there’s not a blasted thing I can do about it.

***

There’s no question the reality of my situation is starting to sink in. If you type the visit diagnosis items from Friday’s appointment (weakness, abnormal gait, clonus, restless leg) into my symptom checker app, you get the results I posted in the above screenshot.

Knowing what I do about my own body, I’m 99.9% certain I’m dealing with multiple sclerosis. But I can’t completely ignore that other possibility. And I’m already conditioned to fear non-answers. If the MRIs (just got them set up this morning and they are scheduled for Thursday) don’t show MS lesions or anything, what then?

***

Thank God for medical cannabis in Illinois. Whether Sunday night’s breathing troubles were directly related to my physical condition and spasms or my overactive, anxious mind, one quarter of a gummy helped.

In a few minutes, I felt the muscles around my chest and stomach let go. I could breathe. And then I feel asleep.

Fibromyalgia

It Isn’t Fibromyalgia After All

visit-summary

Dan and I were leaving the clinic after my doctor’s appointment Friday. I was hobbling with my left arm hooked around his elbow and my right hand gripping my cane. I was so exhausted, I wanted to stop and take a nap halfway to the car. The only thing that kept me going was my desire to get out of the razor-sharp wind.

“Did you hear her?” I asked. “She said ‘this is not fibro.’ I kept it together in there but I wanted to cry.”

***

The past week has been dreadful for me. I’d-rather-do-aeorbics-in-a-pool-of-peanut-butter level dreadful. I’d spent so much time not doing anything in order to save a few spoons, that I didn’t realize I couldn’t do anything, even if I wanted to.

Dan had to bring me clothes, help me rinse the shampoo out of my hair before my appointment, and search the house for my comb. (The comb was in the dining room, where it had been since we unpacked after holiday travels in December. It’s always wash and air dry for me.)

After every chore, I’d have to stop a few minutes and rest.

Wrap a towel around my head. Sit on the toilet with my eyes closed. Brush my teeth. Sit on my bed. Get dressed. Sit on the couch and try breathing a little deeper. Put my shoes on.

By the time we were on the interstate, I was dizzy and willing away a panic attack. (For the record, most times the mental anxiety doesn’t come until after my body starts freaking out.)

***

“Your pulse is 120.”

“That seems high, doesn’t it?” Dan and the CNA both agreed with me. I was sitting upright, but had just walked down the hallway seconds earlier. (I’ve been saying for months that my autonomic processes are screwy. I was appropriately concerned, but not surprised.)

Next, she put the cuff around my arm and in a few seconds announced that my blood pressure was 174 over 110.

I gasped. “Ohmygod. That is really freaking high—the highest I’ve ever had—but I guess it explains why I am so dizzy.” I was also seeing floaters, but I didn’t bring it up. I was focused on willing myself not to pass out.

“Yeah, it’s pretty high,” she agreed. “Earlier this month it was better, though.” She pointed to my records on the monitor, referring to the day Dan pushed me in the wheelchair to my sleep consult. “I’m going to come back in 15 minutes and take it again, okay?”

When she came back, it was down to 132/90, and I was feeling more stable.

***

The doctor eventually came in, and the three of us discussed the issues that had been of most concern to me recently: the inability to move my leg, my worsening weakness, how I walked like I had mad cow disease, and my inability to stand up on my own—at first after a bath, but now also after showering with a shower chair.

“What about getting up off the floor?” she asked.

I looked at the sterile floor of the exam room. “There’s no flippin’ way,” I said. Please don’t make me prove it. The thought of trying to get myself up off the floor…

She took my word for it, but asked if she could watch me walk. The three of us went into the hallway, and I began my slow hobble down the hallway with my cane in hand.

“Are you going to fall?” she asked?

“I think I’m OK for now with the cane.” I wasn’t really confident, but I needed her to get a decent picture of what was going on with me.

As I made my way back to them, my leg muscles were utterly exhausted after only about 20 steps. I asked her about ruling out MS.

***

Next, Dr. S asked me if I’d sit on the exam table. I shakily climbed the single step and tried to lift my butt up with my core muscles while my palms were planted on the cushioned part of the table. It was a struggle of epic proportions.

When I was finally seated, knees bent and legs hanging over the edge, she started a physical examination that included testing the strength of different muscle groups by having me push and pull against her.

Next, she started hammering reflexes. When she tapped my left knee, my leg swung wildly out and then back in. My heel slammed against the metal base of the exam table. It was loud and echo-y and sounded like I’d just lost the game of the year and was kicking lockers in a self-loathing rage.

“I’m sorry!”

The three of us had a good chuckle, and she said not to worry or try to minimize any of my reflexes. She finished up with her little hammer.

Then the weirdest thing happened. She grabbed my left foot, moved it up and down quickly a couple of times, and then held it in a flexed position. My foot went spastic, pulsing in the same repetitive motion for several seconds until she let go. It happened with my right foot too, though not as pronounced.

Clonus.

***

I’ve been reading up on MS and watching YouTube videos for weeks, so when it happened I already knew it had a name. I didn’t know, however, that I had this sign. It felt really weird, voluntary muscles acting involuntarily.

She said I could step down. “This stuff can’t be fibromyalgia,” Dan said.

The doctor agreed. “The muscle weakness, clonus, gait abnormailities, and the inability to move your leg that you reported last month—this isn’t fibro.”

You guys, joy washed over me in a wave from my head to my toes when she said that. Then she added, “If you talk to others with MS, you’ll probably hear a similar story. They’ll tell you that for ten years they dealt with inexplicable symptoms while doctors looked at them like they were crazy.”

I nodded my head in agreement. 2005. The vision loss. The pregnancy test. Doctor I-Don’t-Think-It’s-a-Stroke.

***

She ordered MRIs of my brain and cervical spine, and recommended that I keep any appointments I have. She believes the sleep study will still be helpful. Plus I now have two neurologist appointments on the books, one with INI in Peoria and one with someone local.

“They’re far enough out you can cancel if one or the other isn’t needed, but you don’t want to be waiting to get back on the books.”

***

I’m convinced it’s MS, though there are some other possibilities. However, getting that diagnosis could still be a long, tough road. I’m trying to prepare myself for inconclusive MRIs, just in case. I am the queen of negative test results.

If you’re interested, here’s a quick explanation of how MS is diagnosed and what a challenge it can be.

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.