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. πŸ˜€ ). 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”

All things mental part 2

I mentioned how I was on the ‘med dance’ now and it was getting better. I think hit a hiccup, and that was the fact that after two weeks and dropping to a lower dosage, I was still seriously out of step. So I talked to the doctor and she said to go to a yet lower dose. Which I did. And felt even worse. Because it was late at night I was left with the internet to see if I find out what the problem was. I did find out. And the answer pissed me off.

Apparently the doctor had put me on a medication that has some seriously fun withdrawal side effects.

Yay.

So now I have to have a discussion with my doctor on what medications are and aren’t acceptable to put me on. I think I also need to be a little more assertive. I know, I know, this might surprise some people but I tend to close up quite a lot when I’m unsure, and I’m very unsure when it comes to my mental health. It makes me nervous and I think I don’t make my thoughts as clear. This could have made my current situation a little more difficult. We’ll see on Wednesday if my new doctor will continue to see me as I know I’m gonna likely be a little terse when talking to her.

But really, withdrawal effects?! This is what you develop for a medication when you often have to bounce around on medications until you find the one that works? Something that takes a month to see if it works and then might take a month or more to get off of? Some of us work for a living and can’t afford that time to get off a med where one of the withdrawal symptoms is insomnia. As someone with a mental illness in the first place, I don’t need something that makes me even crazier.

I ended up doing something I normally wouldn’t do, and I know I’ll likely get yelled at by more than just the doctor… I decided to stop taking it. I have an extra long weekend (4 days) and after feeling like I was gonna die and having taken a full 10 mg ambien and 4 benedryl to try to get to sleep once I moved down in dosage and my body started to react badly, I decided to take advantage of the long weekend and ‘force’ myself off the stuff. I knew full well that going from 80mg to 20mg meant I likely had another few days at least of withdrawal, so why not go the rest of the way.

The doctor will likely give me some grief for it, but not nearly the grief I’m gonna give her for putting me on something that has this type of problem. I’ve walked out of doctor’s offices before, I’m not adverse to doing it again.

So I’m single pilled for the moment, and will be that way until at least Wednesday. And whatever we discuss putting me on then will get major research before I take pill one of it. I’ll also be ‘dominating’ the conversation on Wednesday about what’s generally going on with me instead of ‘letting’ her take the reigns of the discussion. Yes, she likely knows better what my diagnosis will be, but I do know better what I’m doing daily and what my problems are. I won’t deny being bipolar 2, but if that requires medications that have effects like this, I’ll find a different way. I’m not going down that road, that’s for sure.

All things mental

I’ve recently had my mental health diagnosis changed from ‘depression’ to ‘bipolar 2’. I still haven’t decided exactly how I feel about that but there it is. I’m now a little crazier than I was before.

Bipolar 2 is a less extreme version of bipolar disorder. I found a good definition from the Mayo Clinic website:

Bipolar disorder β€” sometimes called manic-depressive disorder β€” causes mood swings that range from of the lows of depression to the highs of mania. When you become depressed, you may feel sad or hopeless and lose interest or pleasure in most activities. When your mood shifts in the other direction, you may feel euphoric and full of energy. Mood shifts may only occur only a few times a year, or as often as several times a day. In some cases, bipolar disorder causes symptoms of depression and mania at the same time.

Bipolar II disorder. Bipolar II is less severe than bipolar I. You may have an elevated mood, irritability and some changes in your functioning, but generally you can carry on with your normal daily routine. Instead of full-blown mania, you have hypomania β€” a less severe form of mania. In bipolar II, periods of depression typically last longer than periods of hypomania.

So, that’s ‘now’ me. It’s actually been me for quite a while, I just didn’t realize it before. Now I do and can move forward, I hope.

Mental illness isΒ  very much like getting any diagnosis… it’s scary, it’s unnerving, you go through denial or anger at it… but that doesn’t change the diagnosis. This one is hard for me because it’s ‘that one’, that’s the one person that someone knows that snapped and did something stupid or dangerous and suddenly have everyone mad at/afraid of them. I don’t want to be that person, I don’t want that disease! But I also didn’t want my allergies and definitely don’t want the asthma… just things I have to deal with. Just need to add this one to the pile of ‘who I am’.

I wouldn’t be ashamed if I had diabetes… or was short…. or had irritable bowel syndrome… Why should I be ashamed of this? Why is this disease one that people still step back and start talking very gently to you when they find out… or ask ‘What are you sad about?’ or ‘There’s nothing wrong with doing things out of the ordinary, that’s normal’. There’s no education to regular people about what’s really going on, how to really handle and talk to someone that suffers from this disease. It’s all news reports about how this person had mental illness and killed his family or robbed someone at knife point, or just snapped and drove through a crowd. They don’t put the person that drove to work, did their job, had lunch and drove home without anything going on. That’s boring, that doesn’t make people watch. But it would help those of us with some form of mental illness get through a day without getting a sideways look from someone that knows we have it. It would show that the extremes are not the normal way we react, the way we handle ourselves day to day.

My meds have been changed and that’s taking a little time to adjust to. Been over a week now and I’m better this week than I was last so that’s a step in the right direction at least. Just hoping they work, the ‘med-dance’ is not my idea of fun., but it has to be done. My dancing shoes are just old and don’t protect me so much anymore.