Feelings of uselessness

It’s days like today… the past few weeks, actually, that the MS really rears it’s ugly head. Forgetful, addled, clumsy,…

Is it the “new” medication? Is it not working as well? The infusions seemed to work better, but I can’t take them anymore because of JCVirus and the risks involved with PML (which I think I explained in a previous post). So I’m on a pill, and I don’t know how well it’s actually working. Mention it to the Dr., and she says (reminds me) that stress can cause the MS to “bleed through”. So avoid stress.

Stress? Let’s talk about stress. I’m aware that people have it worse than me, but that doesn’t help (and don’t bother telling me to think about it, I won’t respond because if I do, I WILL go off in a big way). So, what are my current stresses? Let’s list them:

  • Trying to get rid of the house in Chattanooga that needs repairs. Yes, there are repairs going on now, but in the mean time, we’re still paying mortgage on it, to the tune of $800. This is on top of our rent here.
  • Having been out of work for 2 months and having to use some of the insurance money for living stuff, and now having to come up with the money to pay for the repairs on the house.
  • Finding out there are more damages once they’ve gotten through some of the demo for fixing the house. This means getting the insurance adjuster out and having them take another look, and hoping they’ll be willing to give more money for repairs.
  • Jon having hurt himself and having been out of work since May. Thankfully he has short term disability and is getting paid regularly, but not paying any medical bills.
  • Having fought with Jon’s worker’s comp for so long that his treatment got very delayed and he’s still not really gotten any answers.
  • Trying to get myself back into the swing of things at work and having a hard time because of brain fog. I “get lost” sometimes while I’m working on something, and this sends me into anxiety. And with having taken so much time off, I don’t want to ask to go home because of it even though I have a hard time functioning.
  • Medical bills. Paying them off little bits at a time, but they’re just hanging over my head.
  • All of the kids being behind on their shots due to lack of money for it. And Percy is back to chewing himself so bad that he’s getting hairballs again. Few things quite as disgusting as a dog hairball.
  • Doing shows by myself because Jon can’t manage it (this I don’t blame him for, I was where he was and I don’t want him making himself worse). Yeah, I could not do the shows, but I need to try and get another inflow of cash.
  • Keeping up with custom orders while still trying to make stuff for shows.
  • Trying to pick good shows and having failed at that at the beginning of the year, meaning that I spent money to sit and not sell anything or barely sell enough to make the price of the table/booth.
  • Trying to keep things together at home: cooking, laundry, what little cleaning I do (which I will admit isn’t much). Also, grocery shopping, picking up medications, any other little things we need
  • Having my show tent break at a recent show and having to cut what could have been a profitable show short because I couldn’t use my tent. And now having to fix or replace it, or just not do any more outdoor shows. (and the worst part of this is realizing on my way home what I could have done to be able to stay… which just made me feel like more of an idiot)
  • Taking the dogs for their walks alone and just not being able walk them as far as they need. The heat is hard on me, and makes my brain fuzzy if I’m out in it too long (another problem with the outdoor shows. The most recent one left me feeling like someone had toasted my brain on high, and it felt like that for days. Crunchy brain.).
  • Having to be overly careful to not fall on my ass/face because it’ll likely undo the surgery I had. As someone who has always tripped over her own feet (and pebbles, and flush cracks in the sidewalk, and dust bunnies, and leaves, and….), this does make me self conscious, and again, feeling like an oaf who’s almost 43 and still hasn’t figured out how to use her own body yet.

So, what has all this caused? Brain fog where I get lost with what I’m supposed to be doing, both at home and at work. This makes stuff at work take a little longer because I have to double check to make sure I’m doing things right. Anxiety attacks where I just want to curl up in a ball and not doing anything for… well, honestly, days. I have to push through it with anxiety pills and willpower to be able to get anything done. Agitation with any little thing… the dogs needing to go out, needing to stop what I’m doing to do something else that’s necessary, the dogs barking at anything, the post office not delivering a package because they’re incompetent, the idiot driving in front of me that’s doing 25 in a 35 zone, the seat cushions on the couch moving out of place, the cats getting into things they shouldn’t. Finding myself constantly typing the wrong word… and I’m not talking about typos, I’m talking about typing “park” instead of “wouldn’t”, or typing a completely wrong name at work when I’m looking for a client. Not being able to come up with the word (or words) for what I’m talking about.

I just feel constantly on edge and at the point of breakdown pretty much all the time. And I just keep waiting for the next bad thing to happen. If I take any kind of drive, I’m often blaring Nine Inch Nails through the stereo in the car, which is my go to overly stressed album. And I feel bad, but there are a lot of times I just want to be alone. With Jon not working, he’s home and that’s not something I’m used to. We’re good in that we don’t have to constantly be in each other’s business, but it’s still a big change from what I’ve been used to for the past, oh…. 12+ years. And I hate feeling that.

The bipolar of course isn’t helping. The medication that was working fine now isn’t cutting it, but I hate the idea of upping things again. I’m an advocate for staying on medication, but that doesn’t mean I really like taking it. I still mentally fight myself with sometimes feeling useless because I need it.

I’m sick of being strong. I’m over being strong. But I don’t have a choice in the matter.

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”

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”.

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! 😉