Multiple sclerosis, Struggles

Hold on … hold on

It’s been awhile since I’ve posted about music.

Or posted at all. Quick recap …

The good: Fall! Pumpkin spice latte! Car bumper fixed! Weekend trip to Dallas! Corn chowder time! More pumpkin spice latte!

The bad: Copaxone leaving huge welts. Left hand numb. Fatigue a beast.

And … back to music.

R.E.M. broke up today.

I was never a superhuge fan who knew all the deep tracks, but the songs I do know I love deeply. Nightswimming … What’s the Frequency, Kenneth? And of course, Everybody Hurts.

When the day is long and the night, the night is yours alone,
When you’re sure you’ve had enough of this life, well hang on
Don’t let yourself go, ’cause everybody cries and everybody hurts sometimes

Multiple sclerosis, Struggles

Being sick on top of being sick

I’ve been fighting a nasty cold here lately.

Like radioactive green stuff coming out of my nose kind of cold.

It’s really the first time I’ve been sick in a year, which, coincidentally, is how long I’ve been living with MS.

And let me say, for the record, it f#4@*)&g suuuuuuuuuucks. I don’t recommend. I want to kick this cold in its face.

But I’m a trooper, or I tried to be. I missed a day of work and called for reinforcements (my awesome mother) and home remedies (her awesome soup).

I should have called my PCP (but didn’t). I should have taken something other than chicken noodle soup and hot tea (I didn’t). I should have stayed home more days (of course I didn’t).

Stupid me.

I woke up the other night with my hair so wet you would think I had just washed it. I guess I had a fever?

So here’s the thing about MS and being sick. If you are having an exacerbation, it lingers around, as if there wasn’t enough wrong.

The fatigue and weakness, hallmarks of MS, are ramped up just a bit more. They do, in fact, go to 11.

So this weekend will be about taking it easy. The only activity really on the agenda is attending a Travs game, finally. It’s their last homestand of the season.

And there will be sleep. And reading. And bossing asking Nick around politely to do stuff.

 

 

Multiple sclerosis, Struggles

Registries and a new drug

This week I signed up on a registry.

Not quite the kind I had hoped to do. There are no bottles or strollers or baby accoutrements on this one.

This registry is for women who were on Betaseron and got pregnant.

I had almost put the whole experience in a box and tucked it in a far corner of my heart where it wouldn’t be ever-present.

And then came the flood of questions. When were you pregnant? When did you get off treatment? How long were you on treatment? When did you miscarry?

I’m so sorry, says the voice on the other end of the phone. Is there a flowchart for what to tell people in my situation? Is it written down somewhere, like in Up in the Air?

Thank you. Is this the appropriate response?

My body is still in limbo, nearly two months later — an exacerbation that has been off and on since June, and still no cycle to speak of.

I don’t know how to heal from this hell, other than to keep going. Isn’t that what Churchill said?

I start a new drug this week, Copaxone. It’s a daily shot, but with not nearly the side effects of my previous treatment.

I just hope it works. I had a nightmare that I had a severe allergic reaction to it. No anxiety here.

It’s been a reflective week. I struggled with pangs of longing and bitterness, especially seeing all of the families around me on the first day of school. I wonder if that will ever be me.

 

 

 

 

 

 

Multiple sclerosis, Struggles, Treatment

C is for …

Copaxone, one of the disease- modifying MS drugs I will soon find myself taking. Also, a Class B drug, which is safe(r) during pregnancy.

Can it be this simple again?

It almost stood for chemotherapy, which is still on the table if I don’t improve and we decide to stop TTC for a few months.

It doesn’t stand for conception, at least for right now. Sigh.

C is also for complicated, which is certainly what my life has become this past year.

And for crazy, which I have most definitely become this year.

I wish C still stood for cookie.

It will always stand for chocolate, at least for this girl!

Multiple sclerosis, Struggles

Hot and bothered

The record-shattering temperature where I live was 114 degrees today.

That’s not a typo. Only Baghdad, Basra and certain lower levels of hell were hotter than here.

And, as you can expect, I’m not dealing with it all too well.

Starting with the parking lot I went all Towanda on. This morning, Groundhog Day all over again — parked in the way back. Grrrrrr.

And the office was a balmy 86 degrees because someone turned off one of the thermostats. Double grrrrr.

My house? Around 84 degrees. At least there I can strip down to almost nothing and it’s socially acceptable (my cats and dog are a very forgiving lot).

And it’s not that I’m all prissy and whiny because I hate to sweat. Heat does bad things to me.

Like create another exacerbation. Or a pseudo-exacerbation.

I’m officially over the IV steroid honeymoon. And also officially scared.

Because this means I’m worse off than I had feared. As much as I bitched and moaned about my MS treatment, it kept my body from losing its way. Now, the wiring is all frayed and the signals aren’t getting to places like my feet and hands.

I can still walk, so I have that going for me.

Still, if I were a robot, I would probably be destined for the scrap heap about now.

If I were a robot, would I be cooler?

I go for another MRI on Friday. And then it’s probably back on treatment, this time one that is safe during pregnancy.

How I wish this summer was an improvement over last year.

But, like the heat, I’ll drag on.

 

 

 

 

Multiple sclerosis, Struggles, Uncategorized

Gaining persepctive from loss

This week was to be the magical week, when we had hoped to be “in the clear,” so to speak.

We were going to share with our families and friends this weekend that come Valentine’s Day, there would be a new Godwin-Walker to introduce to the world.

It wasn’t to be.

Instead of being near the end of my first trimester, I was going for a follow-up appointment to my surgery from two weeks ago, a D&C.

Our first ultrasound at 8 weeks showed the beginnings of pregnancy, but the end of life — no heartbeat.

We were — are — devastated.

It’s tough to process, to understand why this happened. Not cosmically, but chemically. Was it the MS treatment I didn’t stop soon enough (it’s not safe to take during pregnancy)? Was it my own body?

We’ll never know.

And now we’re in the limbo land of wait-and-see for my body to get itself right again (as if that’s even possible).

We’d like to try again, but honestly, we’re a little terrified.

Every week that goes by without me on MS treatment is another week of fear for symptoms to creep back in. They already have, even with steroids.

If there is anything we can take from this summer it is that we can conceive. And that we can get through anything together. We have an amazing support system.

I know miscarriages are heartbreakingly common, but speaking up about them isn’t.

So I’m sharing, even if it means logging another sad post.

Because I’ve always said that this blog would be as real a portrait of my life with MS as possible.

Of course, when I said warts and all, who knew that it would be all warts?

Multiple sclerosis, Struggles

The day I went all Towanda on the world

That would be today, when I pulled in to my work parking lot at 8:45 and discovered all of the handicap spots were already taken.

And so I called the business that owns the parking lot and asked what the chances were that they would designate more spots for disabled people. This isn’t the first time I’ve had to park in the hinterlands and limp it into the building on a 100-plus degree day.

I’m coming off a pretty prickly exacerbation that made it painful to walk, and besides, it’s just too darn hot to be able to go more than 50 feet without wanting to pass out.

The conversation took a downward turn when she said that they had the minimum number of spots required. And then came the comment that really worked me into a lather.

“Maybe if you got to work earlier there would be a spot available for you.”

Lady, seriously? I work 40-plus hours a week as is. And then some. I don’t get paid overtime for that, either. And I was there 15 minutes before I needed to be. So, no, I don’t need to adjust my schedule to put my already taxed body through more paces.

It’s bad enough you jacked up your rates. You need to do the right thing.

And I counted your spots. You are most definitely in violation of the ADA. By my math, you should have at least seven spots, and you only have five.

So expect my wrath to rain down upon you. Probably in the form of a tersely worded letter. And a complaint to the DOJ.

Because I will go Towanda the avenger — righter of wrongs, queen beyond compare!

Multiple sclerosis, Struggles

Be advised

Excessive heat plus hormones aggravated by MS is an extremely volatile mixture.

It produces a mindset not unlike that of a psychopath.

Thus, I cannot be held accountable for any of my actions or comments in the next couple of weeks. Starting, well, right now.

I know, I look so harmless on the surface. A sweet demeanor to go with that smile? Don’t bet on it.

So don’t look at me askance. Don’t ask me inane questions that truly don’t deserve an answer. Spare me the snide sarcasm that is your weak attempt at humor.

Don’t talk to me about the following topics: Politics, your petty grievances, your adorable ankle-biters, the Mideast, the weather, local government, the debt crisis, gas prices, my problems or your problems.

Those topics not off-limits: Cute animals, cold treats you plan to bring me/share with me and movies/books/TV shows that make good distractions.

It should be said my righteous indignation goes double for random strangers who see me in clear distress with my cane trying to cross a busy street and still have the gall to come up and ask for money. I don’t know their struggle, which may be great, but they can clearly see mine, and yet they feel no compunction to accost me in a weak moment. For such scum, I will not hesitate next time to use my cane for a purpose than it was otherwise intended.

Maybe MS should have made me more sympathetic, but in a way, it’s hardened me. And widened the chasm between me and normal. I feel like I don’t identify with anyone anymore.

It could be my new fresh hell responsible for such malaise. Maybe it’s the heat. Or the hormones.

Maybe it’s me.

No, it’s definitely me.

 

 

 

 

 

Multiple sclerosis, Struggles

Something is not right with me

So I might be (definitely) having a flare-up (pain and numbness of indescribable proportions).

Damn.

I am off my therapy for now. We knew that was the risk going in. I gambled and the house won.

And now I’m back to Square 1, MS-speaking, if I could just drag my useless left leg to that box.

I can’t adequately put into words what this feels like.

Raw nerves is how I first described the contradictory symptoms of numbness and pain.

I have the ability to feel pressure but not texture or temperature.

You know when you get in too cold of water, that electric shock that ricochets through your entire system? That’s the closest universal feeling that I can come up with, if you want a comparison.

That’s what is happening in my leg right now. And, ummm, higher.

Like so much else here, this is probably more than you wanted to know.

Stop reading right now and go look at cats in pigtails if bathroom talk bothers you.

Still here? Don’t say I didn’t warn you.

Suffice it to say that me and the porcelain throne have been pretty much inseparable. Because of the numbness, I can’t tell if I’ve voided, to get all clinical with it. So I go. And try to go, with mixed success. Are you there, pee? It’s me, Jennifer.

There’s not much by way of a remedy. I suppose I could just give up and wear some uber-attractive adult undergarmets. (Hey, they’re not just for crazy astronauts!) Poise can help me keep mine, right?

Exacerbations can last days, weeks, even months. Because I won’t be going back on my treatment for now, my only other option is an IV steroid infusion.

I’m hoping it doesn’t come to that, either.

 

 

Multiple sclerosis, Struggles

Big gulp

Believe it or not, there are some aspects of living with multiple sclerosis I have yet to write about.

So far I haven’t had any of the, ahem, bathroom issues. And I would like to think that I would spare myself and others the mortifying experience of actually sharing that if I did. Then again, as my previous posts have demonstrated, pretty much nothing is sacred or all that private.

But this post has to do with the other end of things, which is at the beginning, actually.

What I am experiencing with alarming frequency is dysphagia, or difficulty swallowing.

Lesions can essentially make any area of the body a serious pain in the ass, whether it’s jelly legs or numb hands or bladder problems or throat issues.

Sometimes, I have to summon the strength to swallow, practically Jedi mind trick the throat to work. The throat has several muscles, and it takes most of them to go through the actual act, which is normally pretty automatic.

It’s one of those small miracles of the human body we take for granted, like breathing. I know I’d never given it much thought until I couldn’t do it.

And when you can’t — physically can’t — go through with a gulp, it is so panic-inducing that you can feel your throat closing up and your mouth drying up.

I’m 90 percent confident that anxiety plays a role in this. How could it not? It’s more than a little difficult to stay calm and carry on when in the throes of a tightening throat.

To give an idea of the cycle — can’t swallow. Panic. Throat closing. An actual lump? More panic. More not swallowing, followed by more panic. Dying. I am dying. Rinse. Repeat.

Then, miracle of miracles, a swallow. Followed by a sigh of relief. Then a big gulp, just to make sure I still can.