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.

Doctors, tests and surgery, oh my!

This has been quite a week. I don’t usually do this kind of thing to myself, but it was just unavoidable. 4 doctor appointments in 3 days. Yeah, I’m a glutton for punishment sometimes. heh

First appointment of the week was the medication shrink. I pretty much fall apart in her office, and we have the longest session I think we’ve ever had. I really like this woman, she’s been good for me. Gets my sense of humor (well, as much as I show her anyway), has similar “beliefs” as I do, doesn’t pull any punches. I admit, I’m not usually a fan of female doctors, but she’s been great. So happy I made the change.

A bit of an aside, and a word of advice for everyone, don’t be afraid to “fire” your doctor. It doesn’t necessarily mean they’re not a good doctor, they might just not be a good fit for you. Health care professionals are a VERY personal choice. Of course, you want someone that’s competent, doesn’t make mistakes, keeps up to date on new technologies, new treatments, the latest research, etc. That’s a given. But someone can be technically/medically “perfect” and still not be a good fit for you. You need to be able to trust your doctor/nurse/dentist/shrink, etc, and you need to feel comfortable telling them what problems you’re having, and even challenging them if you’re not sure something is working. If you’re going along just because you don’t want to rock the boat or hurt their feelings or whatever, you’re not doing EITHER of you any good. I believe on the whole, most doctors, etc, want to help their patients get better. If they’re not doing that for you, for whatever reason, making them believe they are or ignoring the issues isn’t going to make them happy. And I think generally they can tell things aren’t going the way they should… but are they going to “fire” you? Likely not. They’re going to keep trying, and likely as not, failing because it’s not a good match. Think of the relationship as exactly that… a relationship. If you’re keeping a friend around because you don’t want to hurt their feelings, how is it really helping either of you? You’re miserable, and they’re still around when they could be “with” someone else. Open up that space for them and find a better match for you.

Anyway, back to the first appointment of the week. We discussed how things were going (the MS treatment change, the house, the back pain, the nervousness about seeing the surgeon, etc) and she said that while medication isn’t going to fix any of that, not having a medication that’s working for me isn’t going to help me deal with it either (ah, the joys of mental illness. When the chemicals are out of whack, it takes 20 times more to deal with some stress that others might just take in stride.). So, we’re trying a new anti-depressant. Just like any other medication, sometimes things just stop working. I’ve been on Celexa on and off for the past… Oh… 100 years or so? heh Amusingly, as we were discussing other pills, there was a lot of “Have you tried this?” “Yeah, it worked ok.” “Ok, how about this?” “Oh no, that one didn’t work for me at all.” “Let’s see. I have that you’ve tried this and this and this, and they didn’t work so great.” “Geez, I think I really need to start keeping a list of all of these.” “Might not be a bad idea.” So, we’re trying one that I don’t think I’ve tried before, and so, we start the “medication dance” again. Tango, anyone?

Second appointment of the week was the talking shrink. Haven’t seen her in a while due to craziness on my end, and then a cancellation on her end. We haven’t met since before Christmas so there was a bit to go over. And I think we finally made a little bit of a “breakthrough”. Yay! Took a little back and forth, but I think she finally got through my thick head a little bit and helped me see things a little differently. Just needed to find the right analogy, really. Again, we come back to that “right fit” idea.

Third appointment was this morning with the orthopaedic surgeon. Boy, was that one making me anxious. We went over all the details of my back, what I’ve tried, what issues I’ve had, what the MRI said, etc… but, of course, he had to send me down for yet more x-rays before all of this, and, of course, they had to bend me every which way to get the images he wanted. :/ I didn’t really hurt a ton before that but boy was I feeling it afterwards! (and I understand why it was that way, mind you, but it still didn’t make it hurt any less). And he was definitely a surgeon. Buy, are they a different breed entirely. Thankfully I’ve dealt with a few of them so I kind of knew what to expect, but they’re a tough one to deal with. The only “personable” surgeon I’ve ever had was the one that fixed my nose. He was great. The rest have all been very matter-of-fact, dry, etc. He wasn’t too bad though.

What he did tell me was that it’s not a herniated disc, but a bone spur. So, yeah, there’s that. Not sure how the two can be mistaken, but I’m not a doctor. But it’s still a problem, it’s still causing issues, and needs to be fixed. And that, in his opinion, means surgery. A “laminectomy” to be technical. For ease, here’s a link to a little information about it from the Mayo Clinic, but for quickness, it’s basically him taking away a little of the vertebra off to make more room for things. Like I need to be missing any more parts! (I am missing one of my ribs, never born with it apparently. Found out when I was about 12 and they were checking out my scoliosis, and elicited the comment “I always knew you weren’t all there” from my Granny. Love and miss that woman). But first, I get to have something called a nerve conduction study, or EMG for short (yeah, I don’t know, look it up. 😀 ). Last one I had was… unpleasant, to put it mildly. That’s scheduled for the beginning of February. Thankfully, through this process, I had a dear friend there to help with listening, asking questions that I forgot/didn’t think of, and generally making me calmer and more able to focus on what he was saying rather than just shutting down. <3 Love you, lady! And finally... I ended today with an appointment with a doctor I respect and trust, and frankly missed a lot when he left Chattanooga. Man, am I glad I decided to see him about all this. This is a doctor that is a good fit for me, can explain things in a way to make them comprehensible, is patient enough to re-explain things when I'm lost, goes to the computer to look up references to show me, and is generally one of the most compassionate doctors I've ever met. I got very lucky to find out he ended up in the same area as I did. He helped explain EMGs to me and why they're a good diagnostic tool (they test the nerves in sections so they can rule out what part is and isn't working. For those that understand the reference, it's kind of like using a multimeter for the nervous system. They try to find out where the problem with the nerve actually is, and thus can pinpoint where the actual problem is), showed me a diagram that helped explain why damage/issues with different parts of the spine make different parts of the body react the way they do (This picture isn't really graphic, but it might not be safe for work or kids. It's good, though. Incidentally, my spine damage is at L5-S1, which shows why I'm having pain down my leg, and have occasionally had pain on the side and front of my leg: Dermatome picture ), pointed out that I have done all the steps I could do, and in order, and that the next logical step would be surgery, as well as some information about spinal/nerve damage that I didn’t know… And generally reassured me that while it’s a big choice, it really seems to be the right one. I’m not happy about it, but I feel better informed and calmer. (this is also the same doctor that finally got me into a medication shrink and put forth the idea that I might need more than just an anti-depressant… and while it took a while to find the right medication, it’s the best thing that’s happened for me mental health wise). If you read this, thank you Doc.

So, now that y’all have read me ramble on, I hope you can take something away from this, some little bit that might help you either now or in the future. For me, it’s just good to get it out, get it “logged”, and be able to move onto the next step, whatever that might be.

Oh, and I ended the day with a little shooting practice and dinner from Jason’s Deli. I won’t bother you with pictures of my dinner, but I’m going to brag a little about my shooting. Didn’t do as good as I would have liked at 10 yards, but I started strong and finished weak… I was having problems keeping a good stance due to pushing myself a little too much today and making my back/leg hurt. But not bad for not having shot in, oh, maybe 2 years?

Target at 5 yards

Target at 10 yards

And now, I go to watch some Netflix with my wonderful hubby via XBox Live/internet.

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”

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! 😉

Serious state of affairs

This is copied from my Facebook note posted on October 17, 2014. It was a rather in depth post, so I felt it would just be better to add it here verbatim rather than try to write something new. Just trying to update the blog with some stuff that I felt needs to be here. (I have back dated this blog post to reflect the date, but this first paragraph was written in July of 2016)

“I’ve been trying to figure out the best way to do this, and I decided this was just the way. There is way too much for a status update. There are way too many people that I want to tell, so I thought this would be the easiest way.

I’ve been dealing with headaches for a while now. I’ve been thinking maybe it was stress (although I don’t really have much), or not drinking enough water. But I finally couldn’t take it anymore and decided to see the doctor (well, nurse practitioner, actually). He decided that an MRI of the brain was in order, so after some arguing with the insurance company (and winning rather easily), it was approved. Then my fantastic coworkers slipped me into a spot when they likely should have been eating lunch. (and I’d wanted to make sure to get the test done when one of two radiologists were there to read it because I’m more comfortable with them and asking them questions about what’s on the images)

On Wednesday, the np came over and asked if we could go somewhere to go over the results. (it helps to work next door to the doctor’s office). I pretty much knew that wasn’t a good sign. If it had been my old doctor, it would have been nothing, he always came over to give good news. But I knew that wasn’t gonna be the case here. Feel bad for the guy, honestly, this is the first time he’s seen me and he gets this. heh

The telling part of the MRI report is this: “The findings are consistent with demyelinating disease and most likely represent multiple sclerosis.” I’ve actually been dancing around the MS diagnosis for years, honestly. In Houston, numbness/diminished feeling in my legs and feet got me 4 hours of MRI (with poor Jon sitting in the waiting room) which showed nothing, and then a nerve conduction study that also showed nothing. In Buffalo before I left, there was talk of a spinal tap until I lost my insurance and it got cancelled. So I can’t say I’m surprised with the diagnosis, but I am kind of scared shitless.

I have an appointment on November 5th with a neurologist to see what to do next. Half of my coworkers had recommendations for neurologists, and the doctor I’m seeing is in that group. (he’s the one with the newest appointment, the rest are a wait till December or even April!!) So I feel like I’ll be in good hands. That doesn’t mean I’m not up for other information, other looks at the study, etc. I’m trying to figure out a way to put the study and viewer up on my server, but I haven’t quite gotten that far yet. So I’m just gonna put up some of the pictures from the study and a few bits from the report.

I’m generally fine. Other than the headaches and the fact that I haven’t been able to feel my right little toe in, oh…. a year? (yeah, yeah, I know… but I really didn’t want to have to go through a nerve conduction study again and that’s what I figured they’d do. I REALLY didn’t enjoy it at all), I don’t know that I have any other symptoms. I wonder if I still have the numbness/diminished feeling and it’s just become normal to me now, but not sure how to tell. And, really, I’ve been clumsy my entire life so it’s hard to tell what might be me and what might be the MS. 😀

I know people will have lots of questions, and honestly I do too. Don’t think I’ll really know anything until November 5th when I have my appointment, and likely not until after that when more tests are done. (Can anyone say “This is Spinal Tap”? heheh) I’m thrilled to have a good support team between my friends, Jon’s family, and my coworkers. I have lots of people that know lots of stuff. (Incidentally, Chrystal, I’d be thrilled to talk tomorrow if you have time, we’re gonna be on the road for a while so I’ll be unoccupied). I have lots of people that care and will stand by me, so it’s good. I won’t deny that I’m freaked the fuck out, but I know I’ll make it through.

Now for the technical stuff:

“The images demonstrate that the patient has multiple bilateral small white matter lesions. Several of the lesions are located in the periventricular white matter oriented perpendicular to the ventricles. The findings are consistent with demyelinating disease and most likely represent multiple sclerosis.”

This correlates to the images I put up below.

MRI of the brain that shows the spots. "Multiple bilateral small white matter lesions"
MRI of the brain that shows the spots. “Multiple bilateral small white matter lesions”
MRI of the brain that shows the spots. "Multiple bilateral small white matter lesions"
MRI of the brain that shows the spots. “Multiple bilateral small white matter lesions”
MRI of the brain that shows the spots. "Multiple bilateral small white matter lesions"
MRI of the brain that shows the spots. “Multiple bilateral small white matter lesions”

MRI of the brain that shows the spots. “Multiple bilateral small white matter lesions”MRI of the brain that shows the spots. “Multiple bilateral small white matter lesions”MRI of the brain that shows the spots. “Multiple bilateral small white matter lesions”MRI of the brain that shows the spots. “Multiple bilateral small white matter lesions”MRI of the brain that shows the spots. “Multiple bilateral small white matter lesions”MRI of the brain that shows the spots. “Multiple bilateral small white matter lesions”

Other than that, the report is actually pretty ok. Was pleased to see this next bit, and hadn’t even thought about this as a part of MS:

“The optic nerves and optic chiasm have a normal appearance. There is no evidence to suggest optic neuritis.”

Considering I really don’t know how I’d do without my eyesight, this was great to hear.

I’ll be sure to keep everyone updated when I learn more. I have had some people tell me to not necessarily “believe” it all and that it might come out false, and I’d love that to be the case. I’m not a medical person so I can’t know that these spots are exactly what he says they are. But I know the quality of our MRI machine and the quality of our radiologists so I’m preparing for a little bit of a lifestyle change. I will say, though, I have known and known of people with MS that you wouldn’t know there was anything wrong, so I’m not taking this as a “life sentence” at all. It’s just another thing, like my bipolar or my need for eyeglasses. It is scary because it’s new and there is so much “bad” heard about it, but I guess I’ll see how much of that is true. :)”