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.

Aaaaah, the internet…

Facebook somewhat reminds me of the old BBSes we used to be on, back before access to the “internet” was public for all to spew, er…. see. When I first started on Facebook, it was all pictures of friends and pets and selfies and the like. There were hundreds of invites for silly games and stupid quizzes and cute pictures.

Wow, has that changed. Nowadays, it’s all snipping at each other for different beliefs that we ALL knew at one time.

Here’s my thing,… it’s time to get over it. We are doing NO good sniveling at each other when there’s no chance of changing other people’s minds. What will actually happen is that we’ll alienate those around us, both friends and family alike. We will also alienate those friends of friends, making us look a fool and making that friend wonder why they would be friends with people that would “bully” us, and use terms like “I’m just surprised you feel that way”, which, at least to some, comes across as “Wow, I didn’t know I was smarter than you!”. Or how about “your so-in-so supporting friends are idiots.” Bravo. At least you’ve gotten some people to agree with you, but your friend now has a bunch of people rolling their eyes… and possibly unfriending them so they don’t have to see your crap.

And it never stops. I re-followed someone on Facebook because I was told they weren’t sharing political stuff anymore, and 2 days after I started seeing their posts on my feed, there was a ridiculous political meme. If it was an article from a “reliable” news source (and, honestly, I don’t think there are really any of those anymore, but at least if it was from one of the big ones, ok), I’d have just scrolled on past. I’m getting rather good at that. But no, it was useless rubbish. So, back on the unfollow list they went. Maybe in another 6 months I’ll revisit the list.

But more just keep getting added. I’m over it. I don’t care what side it’s from, I’m over it. It’s all a load of bullshit. ALL of it, both sides. And I’m just not going to be subjected to it anymore.

Here’s a clue: No one except those that feel exactly the same as you care about your memes and political pictures and quotes and jokes, and even some of those people don’t care either. “Alternate facts” and Madonna and Mylie the crotch grinders complaining about Trumps lack of morals, and possibly being willing to unplug life support to charge a phone… And the more you complain about the “other side” while still posting this drivel because it’s “funny”. No, it stopped being funny a long time ago… As in, before the internet was even online.

At least if you have something to say, say it yourself. Don’t post someone else’s post with no comment of your own because you agree with “most” or “some” of it. Yeah, I share stuff… but you’ll notice that I have a comment to make about it, something I wrote myself.

And I have my blog. I’ve been using it more because it allows me to write what I want without completely covering everyone’s feed with what I think is important. It’s one little link that people can choose to click on or not click on.

As far as me only wanting to deal with people that think the way I do… My best friend and I are very opposed when it comes to political stuff. And I love her dearly. She will always be my best friend, I will always be there for her whenever she needs me. We have discussed politics on occasion, and then we move on to other things after we agree to disagree. We actually LISTEN to what the other person has to say, and sometimes we add our own views to it. But I don’t have to deal with “You’re obviously a racist because you feel that way” and she doesn’t have to deal with “You’re a special kind of stupid” (these are both paraphrased things I’ve seen written either in comments or in memes, nothing we have either said to each other).

So, think before you share that next meme or post or “news” story. Is that how you really want to be viewed by your family and friends? Do you agree with everything it says? How would you feel if someone made the opposite comment/joke about you?

Yeah, that’s what I thought. Now, if y’all will excuse me, I’m going to spend some time away from the computer and on more important things… like my shrink appointment. I have two this week. My mental stability is a little off at the moment, and I’m thinking a “vacation” might be in order.

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”

Brain disconnect

Suffering from bipolar makes life definitely interesting. Also getting early menopause (discovered at about age 30 after having my tubes tied at 29 and stopping birth control for the first time in over 10 years) and trying to control the symptoms that come with it is also interesting. Putting the two together is downright annoying.

I recently went off my hormone therapy due to my doctor suddenly leaving his practice (and not being able to get a refill for almost a week). Well, by the time I did get said refill, I realized I felt better than I had in a while, so… let’s not take the hormones anymore. However, this brings it’s own dilemma. Change in body chemistry seems to take a little while to really take effect.

And, well…. hot flashes SUCK. (anyone that has gone through them can commiserate. They really are maddening, and for someone that’s already maddened, it’s no fun For someone that’s regularly cold blooded as well, it’s obnoxious). Going off of hormones when you’ve been found to be IN menopause at 30 (who knows how long it had been going on, I might not ever have been able to have kids, and that might be why I never wanted them) means the hot flashes come back. Thankfully not with a vengeance (they were worse before, I won’t deny that), but back nonetheless. So, to preserve what little sanity I have, I needed to get one something. Yes, I do make “light” of my mental illness. I would/will also likely make light of cancer/diabetes/hemorrhoids if/when I get them. It allows me deal with things better.

Anyway… off to the first gyno-type doctor I’ve seen in 10 years (been letting my primary care do my paps, and yes I’ve kept up with them. I’m not a complete moron, there’s a bad family history there) on the “recommendation” of a few friends/coworkers. She put me on a compounded medication that’s “called” (and I say that because it’s compounded. It’s not a real name for it): Ergo-Bell-Bital. This stands for Ergotomine, Belladonna and Phenobarbital. Yay! Something that’s non-hormonal that will give me poor body a chance to adjust to no hormones! Except… well, see, I’m a looney, so I take something with seratonin in it… that means there is a very slim chance of “seratonin syndrome”, which means too much seratonin in the body. The chance is slim, but it needs to be known that it’s there. What should I look out for? Confusion, joint pain… that’s what I was told. Got it. I’ll look out for that. Medication filled 5/1/14. I start noticing results within a little over a week. Yay! Still occasional “hot” flashes (more apt to call them warm flashes) but very occasional, night sweats reduced, life is good.

And then…. get to this week, starting 6/2/14. Things are looking somewhat weird. Got a call from a patient, he needs to talk to the doctor’s office next door, I give him our fax number. :/ But it’s a Monday, crazy is as crazy does. Later, patient needs the phone and fax number for our lab. I write them down. As we’re talking, I look down and see that I have switched them (phone is under fax, fax is under phone), take it back and re-write it. All good. an hour later, receive a fax from said doctor to MY fax machine (not the lab’s) for orders. Hmmmm…. Yeah, something’s wrong. Then had a sort of “breakdown” (not too bad, but needed help). Yay for coworkers who are understanding and didn’t hesitate to come up and help me. Went away, got a little break (I don’t usually take breaks since I quit smoking years ago), and decided to call the shrink and see if he could get me in earlier than July. Yes, Wednesday is fantastic, thank you very much. Take a breather, then go back up. Work till about 3:30.

Today… we won’t go into today. I felt it right as I woke up, but can’t call in. They need me. Didn’t screw up too badly, but I did screw up, and I don’t usually. This, of course, makes me more upset because I don’t usually. My boss is ALL kinds of understanding (I went right to her when I found the mistake, felt better having her hear it from me than from a tech or from the patient first. I do try to own up to my mistakes. Told her I fumbled. Think I need to try my Madden trial on XBox), and the tech affected sent me a message later reassuring me that all was fine, and that she hoped I got some down time once I got home. They apparently know I don’t screw up. That made me feel MUCH better, and I don’t know that I can ever really express it to them.

So, now I have what I call a “brain disconnect”. It’s not working the way it should, it needs “defragged” or “diskchecked” or something, but I have two appointments tomorrow, one with the shrink and one with the gyno=-doctor. I really hope at least one of them helps. I hate feeling “wrong”. Mind, I’m not sure what “right” is supposed to feel like, but still. I know what my “right” is supposed to be, and this isn’t it.

In the meantime…. a full 10 mg of ambien. 2 25mg benedryl. A few drinks. And here I am awake. This is the fun blog, this is the one where you get way too much information, and it makes you feel a little better about yourself. This is the one you should share with your friends so THEY feel a little better about themselves. But remember… if they do suffer from any kind of mental illness (gods, I actually hate that word/phrase… I need to come up with something better, it’s way too clinical), telling them “Well, she’s got it worse!” is not a way to make them feel better. Instead, share it with “You’re not alone.” 🙂

Introvert/Extrovert

I fall into a “weird” category I think. I’m a partial introvert/partial extrovert. I weirdly like being the center of attention while maintaining my “privacy. Yeah, doesn’t make sense to me, either.

I’m rather vocal about my mental health diagnosis (bipolar, and I promise you I will see which “bipolar” it is when I see the doctor next). Yes, I was afraid of it. Why? Because I didn’t want to be my Mom/family. So, yes… I was afraid of my diagnosis. But I’ve come to realize that I am me, I am an individual, and that how I deal with my diagnosis is who I actually am, not the label of my diagnosis itself. And if more people realize it’s just a part of the person, not something that person is choosing (like cancer or diabetes), maybe it’ll be easier for that person to deal with. It’s a disease, not a choice.

So… I’m an introvert for the most part. I don’t do real well with small talk, I feel weird trying to do it. But I do like talking with people. I’ve realized this, as I’ve gotten comfortable with my job. I like chatting with and “helping” the patients we have. I like making them feel at ease. I like helping them feel a little more comfortable with the idea of having their test, with getting whatever diagnosis they get and owning the fact that it might not be ideal, but they’re learning about what’s going on with them. They’re learning now what too many people learn to late. I almost feel like I’m giving them hope.

And I really feel that it’s that little interaction, that little bit of “humanity” that makes what I do better. I’ve seen people come in afraid and go back to their test less afraid. I hope I make the lives of our techs a little easier.

My hubby has made it clear to me a number of times that I don’t need do what I do. I can stay home, work on my art/jewelry, and make a living there. He makes good money, we don’t live beyond our means, we do quite well. I don’t necessarily need the job, but that maybe, mentally, I need the job. And after talking with my head shrink (as opposed to my medication shrink), I agree. The job is good for me, I’ve come to realize that the interaction with both our patients and my co-workers (at least most of them) is good for me.

When we lost our dear Bonners, it was a serious turning point for me at work. I can never really make clear to those I work with how much it meant to both of us what they did for us. It wasn’t generic. It was very much a “their surviving family needs help getting through” and I know I can never really express to them how much that meant to both of is. It was very much the change for me at work. I belonged. I felt like part of the crew. It really made me weep, even though I didn’t necessarily do so there (I think too many years of “Grow up and get over it” kept me from showing my true emotions). I really wish I could truly long hug everyone I work with to make it clear how much it meant to all of us, both me and my hubby, as well as all the “kids”.

So, yeah…. a bit of an introvert. Some people get it (Lisa who knows what I was like growing up, and Jon who was with me way back when with the “woman” who was afraid to talk to his friends), and I know quite a few don’t. But think of the most shy person you know. That was me at one point. I just moved past it because it was necessary to help the animals that I was working with. They were the most important thing to me at that time. Their lives were often in my hands. And I took that seriously. That’s why I became able to deal with the general public. Now it’s become a habit, but often times I need a break. It’s exhausting to me. It’s like running a marathon. So, when I seem to tense up and “freak out” at times, that why. Give me a few minutes and I’ll be alright. Try to force me to keep at it, and you’ll see someone really freak out. 🙂