Symptoms, after

Monday 2 Aug 2010 by Millicent | 1 Comment
Filed under: Uncategorized

(Note: updates are in BOLD)

Venoplasty happened today; keeping track. So far I notice a few things:

Pain level is much less (have not taken any scrip pain meds today, only ibuprofen)

Right hand is still numb but feels different (not as much of a tight glove feeling)

Smell — I could smell the oranges by the side of my bed that my friend brought me.  First time I’ve noticed a smell like that in a while

Reflexes — hyperreactive reflexes in the legs have stopped entirely

Procedure is easy and not painful. I have a headache, but I’m not sure if that’s directly related. The most difficult thing for me was peeing in a bedpan. I have a VERY tough time peeing while lying down.

Update from 8/18:

Well, two+ weeks out, this is where I am: neurological damage takes a lot of healing. My hand varies from “Yay! Feels great!” to “Holy fucking Christ, why? Whyyyyyyyy?” Right now the fingers themselves feel good, but the fingertips are numb. It’s a party!

I’ve been sleeping about 9 or 10 hours every night. Evidently my body needs a lot of downtime while neuro stuff is going on. My daytime energy level is good, but I sure am sleeping a hell of a lot at night.

I’ve also noticed some pulsatile tinnitus in my right ear. All my research about it adds up to: we don’t know, but increased blood flow might be part of it? Maybe? I’m thinking that that’s it. It pounds in the morning, and goes away by afternoon. I’m not concerned; it’s just irritating.

I had diarrhea and trouble regulating my body temp on the second day post-procedure. The diarrhea was from the contrast material — once that was out of my system, I felt fine. The temperature thing also lasted only one day, and I’m not certain what the deal was there, but it went away. I do not feel as sensitive to the heat as I did before.

Update from 9/2:

Pulsatile tinnitus lasted about 3 days and is completely gone now.

Right hand seems to have reached a plateau: I have pretty good sensation in the finger and thumb, while the middle, ring, and pinky are all still numb, although less than they were before. It’s as though I was wearing two pairs of gloves before, and now I’m wearing one pair with the first finger and thumb torn off.

I am walking very well. Balance is good. I go up and down the stairs in my house without any trouble, whereas they used to be a major impediment in my life.

Bladder may also be improving. I still have some issues with getting started, but I have more strength once things do start happening — it’s not the dribble that it was before.

I had a dream that I remembered the other night. Haven’t noticed any more, but that one was pretty cool.

Motion sickness is decreased. I was able to watch the kids play Lego Star Wars on the Wii without feeling as though I was going to lose my cookies. Progress!

Update from 9/20:

I am going to repost my “before” symptoms list and remark on my current condition for each one. Here goes…

Fatigue — Markedly less. I have more energy to accomplish things than I had before. WAY more.

Chronic pain: lower back, arms, neck, shoulder, headache — Markedly less. I don’t need pain meds like I did before, although I still have issues with neck and shoulder pain, since I have several herniated discs in my neck. Angioplasty didn’t do anything for that. Shocking! (Note sarcasm here.)

Numbness: right arm and hand, both legs — Markedly less. My right arm is no longer numb, nor are my legs. Numbness is now confined to the middle, ring, and pinky fingers of my right hand, and the outside edge of that hand.

Cold hands (mostly rt hand) — Gone.

Zingers, burning, pins, tingling: both arms, rt shoulder, rt hand, neck, rt leg — Gone.

Weakness: rt leg, rt hand — difficulty grasping and holding onto objects, frequently dropping things — Much improved. I have not dropped anything since the procedure.

Whooshing sound inside my head or in my ears, usually when I first get up in the morning — Gone.

Purple foot (rt side) — Gone.

Optic neuritis currently resolving rt eye — Improving. I still have a blurry spot in the middle of my field of vision, but it seems to be getting better.

Floaters in vision (mostly left eye) — Gone. No floaters at all.

Bladder (urgency, frequency, retention) — Improving. Could be better, but is SO much better than it was before the angioplasty.

No dreams — Post-procedure, I have been having dreams that I remember. At least 3 or 4, maybe more. I didn’t know how much I missed them until they came back.

Emotional lability — This one is hard for me to judge, but I think I’m less likely to fall apart at the drop of a hat.

Loss of sense of taste/smell — Improving. I can smell more stuff than I could before the procedure.

Loss of interest in food — Improving. Could be better, but it’s better than it was.

Insomnia — Still working on this one. My body is having to adjust to falling asleep without a boatload of narcotics in my system. It’s a work in progress.

Clicking/popping/pain in neck (mostly rt side) — This wasn’t caused by MS in the first place, I don’t think, but by the herniated discs in my neck. No improvement, but I am seeing my physical medicine doctor next week, and will discuss options with her.

Motion sickness (severe) — Vastly improved. I haven’t tested this on a car trip yet, but I am able to watch motion on the TV that would have made me sick pre-procedure.

Poor coordination — Much improved.

Frequent falls — I haven’t fallen since the procedure.

Knee buckles (rt knee, what a shock) — Hasn’t happened since the angioplasty.

Sensitivity to heat/humidity — Much improved. The heat doesn’t seem to sap all the life out of me the way it did before.

Muscle spasms (mostly rt leg) — Gone.

Some cog fog/memory problems — Another one that’s hard for me to judge. I feel less foggy, however.

Tinnitus — As noted above, I had pulsatile tinnitus for a few days after the procedure, but haven’t had any kind of tinnitus since that resolved.

Hyperreactive reflexes in both legs – Gone. I can smack my legs now and they don’t jump up the way they did before.

Other things that might be related? Whiplash injury at age 16, TMJ, TOS, anemia? – These things will take years of study to get answers, I believe. I don’t know if the whiplash contributed to the MS, or the herniated discs, or both. The connections are still unknown.

Overall, I feel SO MUCH BETTER. I have energy, I go up and down the stairs in my house without any difficulty, I am more coordinated and balanced, my friends and family have commented on how I look brighter, happier, less hunched and in pain. I can stand up straight and carry myself with strength and stability that I did not have. If all of this is a placebo effect, I say bring it on so that all other MSers can have the placebo too. I feel so grateful that I could have this treatment and see these benefits. I no longer fear what the future holds for me, as my continued deterioration without any hope no longer seems inevitable. I feel great. It’s a wonderful gift.

Symptoms, before

Sunday 25 Jul 2010 by Millicent | 2 Comments
Filed under: Uncategorized, symptoms

Needing to document what’s up with me before venoplasty, here is as good a place as any. Here we go, stuff that affects me daily, weekly, monthly:

Fatigue

Chronic pain: lower back, arms, neck, shoulder, headache

Numbness: right arm and hand, both legs

Cold hands (mostly rt hand)

Zingers, burning, pins, tingling: both arms, rt shoulder, rt hand, neck, rt leg

Weakness: rt leg, rt hand — difficulty grasping and holding onto objects, frequently dropping things

Whooshing sound inside my head or in my ears — usually when I first get up in the morning

Purple foot (rt side)

Optic neuritis currently resolving rt eye

Floaters in vision (mostly left eye)

Bladder (urgency, frequency, retention)

No dreams

Emotional lability

Loss of sense of taste/smell

Loss of interest in food

Insomnia

Clicking/popping/pain in neck (mostly rt side)

Motion sickness (severe)

Poor coordination

Frequent falls

Knee buckles (rt knee, what a shock)

Sensitivity to heat/humidity

Muscle spasms (mostly rt leg),

Some cog fog/memory problems

Tinnitus

Hyperreactive reflexes in both legs

Other things that might be related? Whiplash injury at age 16, TMJ, TOS, anemia?

In addition, I have developed a sensitivity to hydrocodone, so painkillers like Vicodin or Norco don’t work for me (unless you consider barfing each morning to be okey-dokey. Me, I couldn’t handle it). Neurontin is somewhat helpful for zingers, but it’s also the brain-destroyer that makes me stoopid. And I’m tired of herbal meds that are only somewhat helpful. It’s all a giant clusterfuck.

I know you mean well…

Thursday 25 Mar 2010 by Millicent | 1 Comment
Filed under: symptoms

…but just shut up about how I’ve lost weight, okay? You wanna know my secret? I’ve lost my sense of taste and smell. Yep, that will make a gal lose interest in food pretty darn quick. So even though we live in this culture that says that all weight loss is automatically good, every time, no matter what, that’s not actually true.

I’d gladly weigh more if it meant I could taste my food.

Today in Stupid Things

Tuesday 10 Nov 2009 by Millicent | No Comments
Filed under: social justice, wtf?

Witnessed by me on the back of the car in front of me while I was driving home from the doctor: a piece of regular 8X10 paper with a comment on it that someone had clearly taken time to write, print out, and then tape to the inside of their back windshield:

“Boy do I regret that Obama vote! Shoulda voted for RON PAUL! Then I’d still have my car and my “Stimulas” money!”

Where to begin? First of all, uninformed person, even if you had voted for Ron Paul, he still wouldn’t have won. Not even close. You can regret your vote all you want, of course. That’s your prerogative. In fact, I’ve felt a bit of annoyance at President Obama lately, as he continues to mealy-mouth about the fact that the House health care bill throws women’s health under the bus. I find it cowardly that he wants to pass some sort, any sort, of bill so badly that he’d go along with a plan that doesn’t care about the health and well-being of more than half our population (although I still would have voted for him, because if I had voted for, say, Ron Paul? He still wouldn’t have been elected).

Secondly, here’s how you spell that big Latin word: Stimulus. No ‘a’ in there anywhere. Now, maybe your word-processing program doesn’t have a spell-check? Or maybe it underlined “stimulas” in red but you thought, “Well, of course it doesn’t recognize that word!” But it does. This one does, Microsoft Word does, they all do. It makes it hard to take you seriously when you can’t spell the very thing you’re railing against. You hate the stimulus so much? Maybe before you should learn how to spell it, then. Because right now your rants make you look not-so-smart. I’m just saying. Another helpful tip: stimulus doesn’t need to be in quotes. It’s a for-real, actual word in English.

And finally, I understand from inference that you no longer have a car. But your message is on the back windshield of someone’s car. Whose is it? Could it be…Ron Paul’s?!??!!!!??!?

Sexism is High-larious!

Thursday 5 Nov 2009 by Millicent | 1 Comment
Filed under: sexism

Overheard at the physical therapy office: the therapist telling a patient about how his teenaged daughter is learning to cook. The patient says, “Aren’t they born with it?” Some more back-and-forth between the therapist, the patient (whom we’ll call Douchebag 1) and another patient (Douchebag 2), resulting in Douchebag 1 saying, “All women are born knowing how to cook.” Cue teehees from the others in the office. And then Douchebag 2 chimes in with, “Except blondes. They’re born knowing other things.” Douchebag 1 laughs and says, “Yeah, they’re born knowing how to use credit cards.”

Ha! Wow, wasn’t that an awesome slice of life! I am so glad that I got to overhear a couple of dudez telling us what’s what about the chicks. That was AWESOME.

And this is why I laugh and laugh when people try to tell me there’s no sexism anymore. Suuure there isn’t. Uh huh.

Why?

Wednesday 4 Nov 2009 by Millicent | 3 Comments
Filed under: atheism, social justice

Today is not a good day. Voters in Maine, Virginia, and New Jersey have made some choices that are utterly inexplicable to me. Why is there so much hatred? So much fear? Why does the idea of two people who love each other getting married scare some people so much? What the hell does it have to do with you?

Nothing, that’s what. If you truly cared about freedom, you’d be in favor of gay marriage. If you’re opposed to gay marriage, you’re a bigot and a fool. End of story. There is no explanation that you can give that explains your position, because your position is indefensible. As for Virginia’s new governor, maybe some folks who voted for him didn’t really understand his positions on the issues. Well, here’s one little tidbit: he doesn’t think women should work outside the home. Yeah, you heard me. The wimmenz should be taking care of the kiddies and darning socks and cooking dinner for the menfolk. No, I’m not kidding. This guy truly thinks this way. And a majority of Virginia voters elected him.

This is part of why I’m here. Our world doesn’t work the way it should. Sometimes I get sad and have nothing else I can do except express my anger, my disappointment, and my confusion. I truly don’t understand why some people have so much fear of others. Why? Maybe someday I’ll get an answer that makes sense, but I doubt it. The answer is ignorance, wrapped up in religious dogma. And that makes me want to cry. But instead of crying, I’m going to just say it: opposing gay marriage is ignorant hatred. Voting for conservatives is ignorant hatred. And I’m so, so tired of all the ignorant hatred. It’s never going to go away, and that makes me feel hopeless.

Bodies, in all their wonderful variety

Sunday 25 Oct 2009 by Millicent | 1 Comment
Filed under: social justice

I am human. I inhabit a human body. You are also human (unless you’ve just arrived from Omicron Persei VIII, in which case: Welcome, alien overlords!). Our bodies are human bodies, and they are infinitely variable and changeable. Western culture doesn’t like to accept that there are different kinds of bodies, however. There is a very narrow standard of attractiveness (thin, young, white, able-bodied) and bodies that don’t fit into that standard are considered “lesser.” Or “broken.” Or “deficient.”

I reject that standard. We are all deserving of respect and care and love and esteem, no matter what our bodies look like or how they perform. Fat people are human beings. Disabled people are human beings. We are all human beings. That’s why feminism (which, when you get right down to it, is simply the belief that women are human beings) is so important to me, and why I do my best to be an ally wherever and whenever I can. I don’t accept the common, insidious cultural standards that label disabled/fat/trans/etc. people as Other. Rejecting the othering of oppressed groups is a paramount concern of mine, and it’s a huge part of the social justice movement. We ALL deserve to exist, without muttered comments or outright hostility about our wheelchairs or our canes or our bellies or our hairdos or our skin color or our companions or our tattoos.

My body doesn’t always do what I want it to. This is irksome, and takes some getting used to, but it doesn’t mean that I no longer exist. I’m here, and I’m not going anywhere. I exist, and so do you. We are all human beings.

Balance, a tricky thing

Sunday 25 Oct 2009 by Millicent | No Comments
Filed under: symptoms

I have numb hands, mostly the right one. And I am right-handed. It makes typing difficult, and it also means that I drop things. A lot. I can’t even begin to count all the things I’ve dropped, but here are some samples:

  • Dishes (of all kinds: cups, plates, bowls, you name it; we’re mostly a plastic dishware house now)
  • Glass bottles (oh Pellegrino, it makes me so sad when I drop your glass bottles and they shatter into a million pieces)
  • Things at the grocery store (apples seem to be especially tricksy — I drop them, they roll away, never to be seen again)
  • Other miscellaneous whatever (newspapers, which flutter open so that their multiple pages are all separate. That’s awesome; toys, which make noises as if they’re shocked, shocked to be dropped on the floor; clothes, which is annoying when it’s a bra and I drop it into the bathroom sink and it gets all wet. Not that I’ve ever done that, ahem; cat food, which makes a delightful tuna fish smell that lingers all day; the list goes on and on)

And walking can be fraught with interesting challenges. So far, I am mostly mobile, and very happy that thus far, my MS hasn’t limited my walking. But I am wobbly, and my right knee buckles under me with some regularity. It’s fun to try to explain to people why you’ve fallen; I’ve mostly given up and if they think I’m drunk, well, them’s the breaks.

Do you fall? Drop things? Have you developed ways to accommodate your disability? Do you use a wheelchair? Or a cane? Do people treat you differently because of it? I want to hear all about it in the comments.

Atheism, Faith, and MS

Sunday 25 Oct 2009 by Millicent | 3 Comments
Filed under: about, atheism

I do not have religious faith. This wasn’t such a big deal until I was diagnosed with MS in the summer of 2006, when I went online to find other people dealing with this condition. There is a lot of helpful info out there, no doubt about it. And there are thriving support communities, but they have a common thread: they invoke religious faith as a tool for dealing with one’s illness, and they say that the illness is part of God’s plan.

The first part of that equation doesn’t trouble me; if your faith helps you, have at it. It’s great that you’ve got a system that makes you feel better. It’s the second part that I find troubling. I saw this sentiment expressed a lot: “God only gives me what I can handle.” Or this one: “This illness is part of God’s plan for me.” That sentiment just doesn’t work for me. I find it creepy and troubling to think that there’s an omnipotent being out there who gave me this illness. Why would he do that? It’s rather assholish of him, isn’t it? I’m not willing to accept that this is the plan, sent down from on high with holy fingerprints all over it. It seems much more likely to me that genetics and bad luck are to blame for my chronic condition.

So that’s why I’m here. I’d like to talk about chronic illness with other people who won’t invoke the Celestial Overlord when discussing MS or other conditions. Pain has made me less patient than I used to be, and I just can’t handle any more talk about how Jesus will save me. Let’s talk about science, and treatments, and disability, and medications. These things are real, they are important, and they affect our well-being. Let’s talk reality.