Author: Kat

MS treatment update

As it’s just easier to get it all out there at once, here’s the scoop. If you haven’t read the previous MS update, it’s right here: Holiday stress and other fun things.

So, onto the update. We went to the neurologist today, after a second JC Virus test was higher than the first (.49 for the first, .57 for the second. These are “titers”, showing how many anti-bodies my system has created to fight the virus). She wants to take me off of the Tysabri, which has been given by infusion every 4 weeks, and change me to Tecfidera, which is a pill taken twice a day. She feels this is a safer option, and the fact that I’ve been on the Tysabri for a year and a half and just now gotten a positive is normal and should cause no problems. Also, the heavier treatment of the Tysabri should have gotten the MS more under control and going down to the Tecfidera should pose no problems for me. And the concern of the JC Virus is lessened, but they will be checking my white blood cell count (I forget the name she actually used for it, but am using the information she gave me for the white blood cell info).

This will mean I’ll have a lapse in treatment of about 4 weeks. I won’t start the new medication until about 8 weeks from now (and had my last infusion on Friday). There are some side effect to be aware of, but nothing that I haven’t dealt with before with other medications.

I, of course, worry that I’ll start having problems, but I trust this doctor. And I definitely DO NOT want to risk PML. There is some risk of that with this medication as well, but it seems like it’s less, and easier to keep an eye on. Which is good… I don’t need to turn what little brain matter I do have into mush! 😉 Unfortunately, it also means another pill to remember in the morning… which I’m not good at. I’ll have to just have some on me so when I remember after I’ve gotten to work, I can take it then.

On a side note, tomorrow (January 11) I will be having an epidural for my herniated disk that we had to wait for almost a year to find out about (mind, part of that was my fault, but the insurance company would have rather had me jump through hoops rather than do an MRI like my doctor wanted. It would have cost them less if they’d just done the MRI… now it costs them a bunch of PT visits and then the MRI. 😛 ) That has me a little concerned as well, as I just don’t know what to expect. But I’ll find out tomorrow! Hopefully it’ll just mean less pain and more ability to be on my feet without having my left leg hurting.

So, that’s the current state of things. I will update more when I have more to update. Until then, here’s an adorable (albeit slightly blurry) picture of Ruiny getting one of her many bathes from her big sister/mom, Guin. <3

Ruiny getting a bath from Guin. This is every day... multiple times a day. Ruiny getting a bath from Guin. This is every day… multiple times a day.

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The perceived pussification of the human male (American male?)

I’ve noticed a long running trend about men… they’re pansies, they leave their clothes laying around and won’t put them in the hamper, they leave empty plates laying around, they can’t handle being sick, they get the “man cold” which is a death sentence compared to what women get, yada, yada, yada…

I don’t buy it. Are there men out there like that? Sure there are. But I’m amazed at what gets shared/spread around the interwebs about men.

First, they’re chauvinists, they make rude comments about women, they keep women under their heal, they’re dismissive, they’re nasty. Any woman that says they haven’t had this happen to them are, of course, lying or clueless. Well, guess what. I’ve had the cat calls, I’ve had the comments, I’ve dealt with the rudeness, and I’ve survived. Why? Maybe because I dismiss it out of hand. I don’t allow it to control me. I don’t immediately get on Facebook/Twitter, etc, and tell everyone about how some man looked at my butt. That man (not all men) is a jerk, and I have better things to do than give him any of my precious time that could be better spent on jewelry, or art, or video games. But what if someone grabs me? They’re getting decked, plain and simple. I’m not a victim.

Second, this whole “man cold”. Oh please. I guarantee there are plenty of men out there that get up, go to work, take care of what needs to be done, all while sniffling into a paper towel (I have noticed they don’t always use tissues). Yeah, there are some that are babies when they get sick… and there are women that are babies when they get sick. But if “I” only report the babies, it makes ALL men look bad, and that, I believe, is the goal of this kind of thing. Same as any commercial or TV show that portrays men as bumbling, clueless, inept wastes of life. Disgusting.

What happens when a man posts something similar about woman? A woman being a baby and not getting out of bed because she’s sick? Oh, women are all on her side, saying she takes care of so much in the house, she deserves to lie down when she’s sick. How dare that man question her!

Sick of it. Just completely sick of it.

And if your man really does leave his stuff laying around, find a way to get him to help. Nagging isn’t going to do it. A simple “I would appreciate it if you’d make sure your clothes get into the hamper, please. It saves me the time to gather up everything”. And if he does it? Hug. Kiss. You notice he did it all on his own later? A hug and a “Thank you so much for getting your stuff in the laundry! It means a lot that you care about me that much!”

A relationship is a give and take. Learn to make it work

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Holiday stress and other fun things…

I haven’t really talked much about my Mom, but I just need to get this out. This year will be my 3rd Christmas without my Mom. Three Christmases ago we at least exchanged gifts, but hadn’t verbally talked from before Bon died (in September, so I believe it was early September that was the last time we talked). The following year I was diagnosed with MS and I won’t bother to repeat what she told me when I emailed her about it, but suffice it to say I haven’t heard from her at all asking how things were/are going (although we did get a “Hope all is well with you” in the Christmas card last year).

Three years without talking to my Mom at all. Two years with our only contact being a very generic Christmas card last year. Don’t know what I’ll get this year, if I’ll even get anything.

Hurting a lot this year for some reason. Mourning the loss of someone that is still alive is very, very hard.

On top of that, I tested positive for the JC Virus, which could affect my treatment for the MS. This Friday will be another test and then in January I have an appointment with the doctor to discuss what our next step will be. For a little information, JC Virus is very common, but “Polyomavirus JC (often called JC virus) is carried by a majority of people and is harmless except among those with lowered immune defenses.” As I’m on an immunosuppressant medication (Tysabri), this is a concern as what can happen is PML or Progressive multifocal leukoencephalopathy, and that’s not a pretty thing. More information for folks that are interested in the first and second links below.

Recently, I also entered a drawing in a “Rare Artist Contest” which is for folks somehow affected by a rare disease (MS is a rare disease). I entered just before the deadline, and thus likely won’t win the “popular vote” (it’s rather high for the first place art piece, and I would need everyone on my Facebook to vote, and have them all share it and have everyone on their Facebooks vote, and I know that’s a long shot). But I have put up a link for people to vote and share the link with the hopes that I’m at least in the running. I’m hoping that over the next few days (a person can only vote once every 10 days) the number that I have will go up.

But while winning would be cool, it’s not my only intent on doing the drawing and entering the contest. This is a very serious disease, as are other rare diseases. Having this new “JC Virus” hiccup has really thrown me for a loop. PML can be a really devastating thing to deal with, and I’ve known it’s a concern since I started my first treatment. Now that the JC Virus is a factor, it’s unnerving.

Because of all of this, I ask y’all for two things. The first is to vote for my piece if you haven’t already. The second is to take care of yourself. When you forgo treatment for a mental illness because you “don’t need it”, remember this: It’s not just for you. Your illness is affecting your friends and family, and it hurts them when you ignore that… and subsequently them. It isn’t just about you. If you want to have a relationship with those you care about and who care about you, get on treatment. Get help. Stay on your medication. Don’t think that you’re all better. You might be better, but it’s the treatment that is MAKING you better.

There’s so very much to lose when you don’t.

That is all.

National Institute of Neurological Disorders and Stroke: Progressive Multifocal Leukoencephalopathy Information Page

National MS Society information on JC Virus

RareArtist Contest “Special Snowflake”

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I think it’s a little telling…

As I’ve driving around our little historic town, I’ve seen MANY political signs in yards, medians, on fences, etc. And there are a lot of them. I’ve seen the same thing in years past, as I’m sure everyone has. But I’ve noticed something a little different this year.

There seems to be a lack of presidential campaign signs.

Oh, I’ve seen them for sure, both sides. But there have been many, many times I’ve passed a “field” of signs and there’s not a Trump or Clinton sign to be seen. And it’s been on both sides. Lots of Democrat signs for senators, councilmen, governor, but no Clinton sign. Lots of Republican signs for lieutenant governor, attorney general, state treasurer, but no Trump sign.

I think it’s proof that even the people that will put signs on their lawn don’t like our choices.

As for myself, I wouldn’t put one up either. I think most of my friends/family/acquaintances know my general politics, and I’m not happy with what we have to work with. And I’m terrified of what the future of this country will be. But here we are and I guess we just have to work with it.

If you’re educated, you know what “your” candidate stands for, what their past really is, what they say they will do (and if their past shows they are actually telling the truth), than vote. I will say I pretty much stand with Mike Rowe when it comes to telling everyone to get out and vote, and I don’t see the need to repeat it in my own words. He’s done it quite well.

Mike Rowe on encouraging everyone to vote

For now… all I can hope is that things will get better, but I don’t have a lot of faith in that. So instead, I will hope that everyone is safe tomorrow and in the days ahead.

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Is the proof in the pudding?

So, there’s been another shooting involving a police officer and a citizen who was, of course, completely innocent. Do I know what actually happened? Nope, and neither does ANYONE else until the footage is released. And the saddest part? It won’t matter WHAT that footage shows, people will believe what they want to believe.

The biggest thing I have to say about all of it is this: All that’s happening with these “protests”, and I’m using that term VERY loosely, is that they are giving those people who say/believe that black people are violent, dangerous, animalistic, uncivilized, etc., the “proof” that they need to keep saying/believing so.

And if these “protesters” had any kind of sense, they’d realize that and it might stop at least half of them.

Nothing is going to change until the shooting stops. I will say that if I were a police officer, having seen how much violence has been pointed in my direction, I’d be jumpy and more likely to shoot. Mind you, I’m not a police officer and I haven’t had the training they have. But I can somewhat understand why it seems these shootings have gotten more prevalent.

But are they really? How much of it is the way it’s always been, but because of our social media environment we’re hearing about them, and getting “information” before any of the real facts can come out? Because once this stuff gets out there, people have already made up their mind about the “facts” so that when they actually do, they’re able to twist those facts to say what they want them to say. It’s this kind of thing that causes trials to be moved because they alleged can’t get a fair trial where the crime has been committed due to news and public opinion having already been set.

So, what does this all boil down to? I’m disgusted, and I know nothing is going to change until either the police stop trying to defend themselves against an enemy that has sometimes shown itself so they have to “jump the gun”, or the folks being shot start following direction when they’re stopped by police for whatever reason. One of the sides needs to back off… and, unfortunately I don’t see that happening.

And that scares me because it’s only going to get worse and worse… and we can’t afford to buy a house out away from everyone and put up a tall, electrified wall to keep anyone out.

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Double standards

I’ve seen it time and time again. It’s ok to bash/flame/degrade certain groups, and people that do so often get defended when someone of that group tries to stand up for themselves/their group.

Why is this ok?

I want you to think of how many times you have said something derogatory about a general group of people: men, republicans, democrats, southerners, cat lovers… a group that it seems to be generally acceptable to be put down. Now, I want you to change that word to black, or mexican, or jewish… See how it’s suddenly not something to be defended anymore? Why? Why not be able to generally blame a nasty/vicious/stupid act on a group that you think shouldn’t be picked on? Where does the line get drawn?

When you’re not generally part of a group, and you only hear about that group from friends/news/jokes/anecdotes, why are you allowed to defend someone who has said something nasty or rude about that group? Sometimes going so far as to use another comment/joke/often talked about but maybe not as true as you think it really is to defend yourself/friend/person that you agree with?

I want y’all to think about that the next time you see a basher get called out on something. Before you defend them, would you defend them if they were saying something against a group you like?

Food for thought.

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The joys of Social Media

I’ve noticed as time goes on, I spend less and less times on Facebook. It’s not a matter of boredom, it’s more a matter of not wanting to deal with the drivel, stupidity and hate that’s involved on there so much. There’s only so much I can take

What kinds of things? I pointed out one earlier. The posting of “Hey, we’re getting other cars in trouble on purpose because they have the bumper sticker of the opposite candidate that we don’t like”. There’s also the “Her/His hair is ridiculous, are we really going to vote for that hair?!”

And then not even related to the election are the posts from those who don’t live in the US telling us what we should and shouldn’t allow to happen, and how our constitution should be interpreted. Of course, our country affects yours. But that doesn’t give you a say in what we, the real citizens of this country vote on and fight for. We have our reasons for our beliefs and will stick to them. Worry about your own country.

So, yeah… I find myself less and less being involved. I guess that kind of thing goes in cycles (just like the old BBS systems did and the forums did/do)… and I appear to be on a down cycle.

Trying to find a way to enjoy myself more… I’ve unfollowed some folks that are being way too “vocal”, and trying to remember to check in on those that I care about (since Facebook doesn’t want to give me what I want willingly). I can see myself doing a little more blogging, and I’m also trying to find a way to market my jewelry/art more. It’s going to involve work, and my friends will know how good I am with that.

High on the list, though, is my Bon story. It’s currently called “The Matriarch” and will have my painting of her on the cover… and is written by here. I’m planning on publishing so it will eventually be for sale somewhere, and I will post that when it happens, as well as posting the first chapter or two to get people interested in it.

So much stuff happening! Maybe not spending as much time on social media might not be a bad thing…

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Racism?

So, I listened to a young kid the other day talking about his pet shedding all over the living room. And then the words that came out of his mouth stopped me in my tracks and sent me on an internal dialog that occupied me for a while then, and has replayed in my head quite a few times since.

“This isn’t racist. There was black hair everywhere.”

What? How does that even work? Are be getting so sensitive about this that the word “black” is going to be something we’re not allowed to say anymore without a caveat? That is just ridiculous if that’s going to be even something a few people try to make common practice.

I will never pretend to have any idea what folks of African or likewise heritage have been through. I’m about as white as they come, grew up in suburbs and rural areas, very little exposure to anyone that wasn’t of “European” descent (the darkest folks I usually had contact with were Italians). But are we really going to go that sensitive? To me, that would seem to be creating MORE of a rift between people rather than creating understanding and tolerance.

I’m not sure what the answer is, but I don’t believe this is it. Neither is taking away words from people. I know there’s a lot of “I’m offended by that word/phrase so you shouldn’t be able to say it anymore.” I wonder how many of those people would have been offended by it if they weren’t told to be offended by it from other people.

We’re headed in the wrong direction in my opinion. And the idea of anyone thinking that talking about their pet making a black furry mess on the floor could be construed as “racist” is a sad, sad state of affairs.

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It’s a cruel, cruel world

I’m getting blown away with the world lately, and how mean we’ve gotten to each other. As I wander through Facebook, news sites, or just in the real world, I’m stunned at the stuff that people post/say/do that’s becoming the norm.

Obviously the election has everyone very polarized and I get it… but do we need the nasty memes to go along with it? The Pope smacking Hillary and making everyone in the stadium happy, retirees baiting police to keep writing tickets for a badly parked car because of Trump bumper stickers… and that’s not all there is. Posts celebrating someone squirting someone else with boob milk because she wanted her to move. Posts about revenge. Posts about how stupid people (adults) who play games are when it doesn’t affect you at all.

And let’s talk about real life. Almost no one on my street knows how to park to allow everyone else to park in front of their own house. Trying to pull out of a parking lot is impossible. No one will move over if you need to merge coming onto the highway (and there’s no one in the lane next to them so it’s not like they can’t move over), people cutting other people off, not moving over when you see someone coming down the same aisle as you at the store.

What happened to us? Yes, there’s a “anonymity” that comes with being online, but when your friends/family see you post this stuff? They know who you are. And yes, they’re likely judging you. And out in public? Gee, you’re in a car, of course you’re safe. But why be rude?

When I see supposedly “Christian” people bashing each other, they’re not actually Christian to me. I have respect for those that actually follow their religion’s teaching. Unfortunately, it seems like it’s becoming rare. The “Wiccan” philosophy (rede) is the same. Harm none. And yet it’s easy to bash Christians because “they deserve it”.

I’m tired and disgusted with way too many of my “fellow man”.

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Strong one?

Oh, look! I have a blog! I can’t even say I forget about this anymore, it opens up in a tab when I start my browser. I just look at it and go “No energy, I’ll write tomorrow.”

But today I guess I have the energy.

I brought over my post from Facebook about my MS a little earlier today. As it said, I was diagnosed with MS (multiple sclerosis for those that might not know, and yes, there have been people who don’t know what “MS” means) in October of 2014. It actually was not a huge surprise as I have kind of danced around with the MS thing since the late 90s. I thankfully don’t have much problems with the MS, there’s no numbness, no paralysis, no real pain that I’m certain is because of the MS. I have a wonderful neurologist here in North Carolina (on the recommendation of my neurologist in Chattanooga who actually interned with her), and she got me right on treatment that seems to be working. The only real issue I’ve had is some “brain issues”, cognitive issues (memory, thought processes, finding the right word for things, etc) that I’m learning how to manage.

My treatment is an IV infusion once a month (the nurse and I joke that it’s replaced my “monthly visitor” since I’m already through menopause) with a drug called Tysabri. It was a little unnerving and odd at first, I won’t lie. Getting an IV inserted, sitting there for a few hours (today was 1:30 until a little after 4), having a bandage on my arm where it was for a while afterwards, getting a bruise (I just bruise, doesn’t matter how good the person is). But I’ve actually gotten used to it. I take chainmail supplies with me and often get a bracelet or earrings done while I’m there. They’re very accommodating when it comes the the IV placement to let me still use my hands to work pliers. Its become normal for me.

And then… there are instances like today. I usually sit in my chair, go through my IV stuff (the medication and then saline afterwards to make sure I get all the medication out of the line), pack up when it’s done, and sometimes use the bathroom before I go. It’s about a 45 minutes drive up to the hospital I get it done at, and I drink a lot of water during the day (makes the whole “IV” thing a lot easier). But today I had to use the bathroom while I had the IV in… and that means taking the IV pole with me into the bathroom.

I don’t know why, but that just throws me. Maybe because normally I can just ignore it. The IV insertion only hurts for a little bit usually, I can’t feel anything with the medicine going in, it’s in a sort of quiet part of the hospital that doesn’t feel quite as “hospital-ish”. But when I have to move with that pole, I think it just kind of drives home the fact that I’ll be doing this for a very long time… possibly for the rest of my life. And yes, I know there’s seriously amazing treatments coming for MS, but with my lack of real issues, I’m not planning to have chemo and then stem cell treatment… The cons to me outweigh the pros, at least at this stage in my life.

I’d done one of those silly Facebook quiz things the other day that gives you a “meaning” based on your name. Mine came up “The Strong One”. I’d commented when I posted it “Some days I’m not so sure…”, and today that came to mind when I was in the bathroom, staring at the IV pole and the line going to my arm… and, honestly, kind of fighting back tears about it. Yeah, I guess I’m doing it and I’m handling it better than some might, but some days it really doesn’t feel like strength.

I will say, though, I was rather glad that it was a “left arm” IV day. It’s really hard wiping with your left hand when you’re used to using your right! 😉

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