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.

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.

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. :)”