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BlogBiking

I’m writing this post from the bike at the gym (note: it’s also heavily edited – turns out phone blogging during cardio isn’t efficient). I questioned how much of a workout I could possibly be getting if I’m able to freaking blog while doing it, but the sweat and heavy breathing (not that kind) tell me I wasn’t doing too badly. This gym visit is costing me approximately $360 because it’s the first time I’ve been to the gym in my year of membership here. I’m not proud of that, but I am proud of myself for getting myself here today.

Ever since my most recent medication changes a couple months ago I’ve developed an obsessive relationship with food. I’ve watched the scale go up and up and up, and my depression get worse and worse. It’s hard to get dressed much less get myself out the door to the gym. But today I did it, and I made a plan and goals for doing it for the next month. If I feel too depressed to go, I don’t go, and it’s not a failure. If I go, I will celebrate by eating junk food. I’m mostly kidding, but I’m also self-destructive as hell.

I would love to lose the weight, but really I just want to feel better. Getting back to my active athletic self is what I want, even if I start slowly. Like on a stationary recumbent bike navigating fake hills and texting and blogging while my long inactive legs start to burn.

Anyway, all this to say: I’m proud of myself today.

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The First TMS Treatment

Today I finally had my first TMS treatment for the depression part of my bipolar disorder. I had the prep appointment the other day, but because we were waiting on insurance paperwork to come through, I didn’t have my first actual treatment until today. I was so tired and frustrated from waiting for insurance that I didn’t have any energy left to be nervous about the procedure. That ended up being fine because the procedure was not scary at all.

The technician, who I will become intimately acquainted with over the next seven weeks, walked me through the procedure before we started. She’s very friendly and thinks I’m funny. Every time I say something she thinks is funny she repeats it loudly instead of laughing at it, which is amusing. She told me she liked my shoes (shown in the photo above – I put on special shoes for my first day) and I said, “Thanks, I call them my David Bowie shoes.” She said, “YOU CALL THEM YOUR DAVID BOWIE SHOES!” I’m going to make this a project during my treatment, to see how many of my comments I can get her to repeat in a loud voice.

Anyway, the treatment. They put the cap back on my head and positioned a round instrument on the left side of my head according to the grid they made the other day, and they pressed it into my head. There was a series of zaps that lasted four seconds followed by a ten second rest. It felt like mild electrical waves tapping my head. It didn’t hurt, but it induced a headache behind my right eye that lasted four seconds. It was mild, but if I had a headache like that on a normal day it would be annoying but not painful.

The series of four seconds on, ten seconds off lasted 17 minutes and then I was done. The tech asked me questions about my mental health history, current diagnoses, and rating my moods on scales from one to ten. She said she would ask me those every day.

All in all it was very simple and easy. I have a bit of a headache afterward, and feel a little lightheaded and nauseated, but neither stopped me from getting tacos for lunch on the way home. I do feel mentally exhausted, maybe partly from the depression, but also partly from the brain “workout” I did today. The tech said that usually gets better after the first week. So I’ll have my second treatment tomorrow, then I’ll be in full swing starting next week.

Now I’m going to go stare at a wall for a few hours because that feels like my level of mental competence today. I hope some of this depression lifts soon.

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TMS Day 1

Today I officially began the TMS process, which I talked about in this post. This is a seven week commitment and 36 treatments, and there’s a chance it won’t even work. There’s a chance it will though, and that chance is worth the effort after almost 20 years of trying medication after medication after medication after medication, etc., and failing all of them. This is something new and different.

Today was like freshman orientation – lots of paperwork and lots of preparation and meeting the people I’ll be working with for many hours of my life for the next seven weeks. I didn’t have a treatment today, but they did use magnetic waves to map the left side of my brain in order to see where the most effective spot to treat was. They did this by taking lots of tape measurements of my cranium, drawing symbols and numbers on it, and drawing lines on my face with surgical marker. It was sexy. Then they made a grid of the specific area of my brain they were going to treat.

Four different people asked me if I needed to go to the bathroom in a matter of three minutes. Perhaps I looked like someone who might pee in their chair. They had me lay my forearms on a table, hands face up, and they explained that they were going to administer magnetic waves in the left side of my brain and make my right hand twitch. Then they were going to gauge how strongly my hand twitched to figure out the most effective spot to stimulate my brain for the treatment. They used an instrument that looked like those giant glasses attached to the chair at an ophthalmologist’s office, and it would make a clicking sound and my hand would twitch as a result, just like they said. I felt nothing. Just my hand moving of its own accord.

They went row by row, cel by cel in the grid. After each row I had to stretch my hand, make a fist, and wiggle my fingers. There was a technician who reminded me to do this and giving me instructions.

Click. Twitch. Click. Twitch.
“Make a fist. Stretch your hand. Wiggle your fingers.”
Click. Twitch. Click. Twitch.
“Fist, Stretch. Wiggle wiggle.”
Click. Twitch. Click. Twitch.
“Fist. Stretch. Wiggle Wiggle.”
“Can you say ‘jazz hands’ instead of wiggle wiggle please?”
“No.”
Click. Twitch. Click. Twitch.
“Fist. Stretch. Jazz hands. Ugh.”
“Thank you so much.”

The process took about an hour. It was tedious, but I will say that the technicians and staff were very sensitive to the needs of mentally ill patients. Before they took measurements they told me that they would need to stand very close to me for a few minutes, but I could let them know if I needed them to back off. They explained everything in detail before they did it, and the program coordinator even told me ahead of time that there would be a man and a woman technician, and that if that was an issue for any reason that I could let them know. It’s always nice to be in an environment where I don’t have to fight the system to get what I need. It’s a rare situation to be in, and I’m always thankful when I come across it.

I have to wait for more insurance paperwork to come through before I start my actual treatments, and who knows how long that will take. Even though they’ve explained to me in detail what to expect, I’m still nervous about all the unknowns. The slight discomfort doesn’t worry me. For one thing I have twenty something tattoos, so whatever happens I can deal with it. For another thing, I don’t care what I have to go through if it will make me feel better. I’m nervous about the unknowns. They said that the depression and mania can get a little worse during treatment before it gets better. They recommended seeing a therapist more often, and keeping my support system close. That’s scary. But I will do my best to push through.

I will update the blog once I get an actual treatment and share how it went. For now, I’m going to go to the bathroom because no one gave me the opportunity to go while I was at the doctor’s office. So inconsiderate.

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Mental Health FAQ

When you go to a psychiatrist appointment, a general practitioner appointment, or a therapist appointment to address your mental health issues it can be scary, especially if it’s your first time. I was terrified the first time I decided to see a therapist when I was 20 years old. I was alone, I had no support, I didn’t know anyone who had seen a therapist, and I had stress diarrhea for weeks. The first time I brought up my depression with my general practitioner was scary also because I was terrified that he wouldn’t take me seriously. The first psychiatrist appointment ever was daunting because I didn’t want to believe that I needed a psychiatrist.

I imagine I’m not alone in my fears because living with mental illness is scary. We are up against a stigma that spreads through almost all parts of our lives. Even when we ask for help, things can go wrong. But when things go like they’re supposed to, there is progress. I have been to many therapists, may psychiatrists, many GP’s for mental health, and I’ve seen good ones and bad ones, and ones that have just not worked for me. Here are a few things that I wish I could have known when I started treatment. If you are considering getting help for your mental health, I applaud you and hope this helps.

Q: What will a therapist do on my first visit?
A: They will introduce themselves, and they will ask you why you came in. This is not a judgement, they want you there, and they want to know how to help you. Even if you aren’t able to be articulate why you’re there, do the best you can. They will ask you questions and lead the conversation when you’re not able to.

Q: What if I’m embarrassed by something I need to talk about with my therapist.
A: Your therapist will never judge you. The truth is that they’ve probably seen it all. I tend to seek out older therapists who have been practicing for a long time because there is literally nothing you can say that will surprise them. Being honest is the only way to make true changes in your life. You’ll get out what you put into therapy.

Q: What if I don’t like my therapist?
A: The best thing you can do is be honest with your therapist and yourself. It’s okay to discuss this with the therapist. If you can’t work it out, find another therapist you can work with. It takes some trial and error sometimes, and there is absolutely nothing wrong with leaving a therapist you’re not comfortable with. This applies to all doctors and psychiatrists as well. Trust is a big part of mental health treatment.

Q: What could a general practitioner possibly know about mental health?
A: Enough to help point you in the right direction when you need help. Sometimes a GP is all we have available to us, and there’s nothing wrong with that either. They can prescribe medications and refer you to a psychiatrist or therapist if they think you need it. Go to who you trust as your first step.

Q: Is it as interesting to sit in a psychiatrist’s waiting room as you’d imagine?
A: Waiting rooms are always professionally discreet. No one is even paying attention to you much less trying to guess why you’re there. I’ve never felt unsafe in a psychiatrist waiting room.

Q: What is the difference between seeing a psychiatrist and a general practitioner?
A: A psychiatrist specializes in only mental illnesses and mental illness medications. They will be more up to date on specific medications and specific diagnoses and can provide a more in depth mental illness treatment. Generally, the philosophy is that if it works, keep doing it. I mean that if your GP prescribes you some medications that make you feel better, then keep taking them. If your GP has tried everything they know to try (like in my case) they may say go to a psychiatrist to try something different.

Q: What is the difference between a psychologist and a psychiatrist?
A: A psychologist will be your therapist and cannot prescribe medications. A psychiatrist will prescribe your medications. Most psychiatrists don’t do therapy, but there are some who do. I’ve never been to one who does, but it sounds like it could be a nice simple “one stop shop.”

Q: What’s the deal with medications? Are they pills that make you happy? Are they just a crutch?
A: Mental illness is much more complex than happy/sad. The hardest part of getting mental health treatment is that there is still so much that even the experts don’t know about it. They don’t know exactly why some medications work and some don’t, or why it’s different from person to person. While mental illness is a real, diagnosable medical condition, just like diabetes, or a broken arm, the treatment is different for each person. A doctor will pretty much treat a broken arm the same way for each person, because if they do, it will heal. Unfortunately depression and other mental illnesses are not so linear. We use medications as a way to stimulate our brain chemistry to do what it should be doing anyway. Just like a diabetic gives insulin because it’s what their pancreas is supposed to be doing anyway. Medications are not happy pills. They are not a crutch. They help clean up your thought processes and clear pathways so that you can function as yourself, just like when you clean out the hallways of a house so you can get around the house with less stress. I was prescribed medications for the first time at age 20, and I carried the bottle around, unopened, until I was 22. I was afraid of the stigma. I was afraid that they would give me a false perception of the world. I wish I had been more open minded sooner though, because it was the depression that was giving me the false perception. The meds helped me see more truth.

Q: Is it possible that medications won’t work?
A: Unfortunately there’s always that possibility. Sometimes it takes trying a few medications that don’t work before finding ones that do. It can be a frustrating system because often you have to take the medications for several weeks before you know if they’re helping. It can be so time consuming. It’s an imperfect system, but it’s the best one we have right now. There’s so much research being done about treating mental illness, learning why it happens, and learning what the symptoms mean that there are new options available all the time.

Q: Can insurance be a pain in the ass when it comes to mental health?
A: Sometimes. Mental healthcare is still a completely separate section of insurance from healthcare (guess what, it’s all healthcare!) and it can have its own rules. The issues I’ve run into over the years are that insurance can sometimes dictate how many therapy sessions you get per year, and they can limit the options for doctors you can see. The staff at therapist and doctors’ offices are pros at dealing with insurance, and will work the system if they need to to get you what you need.

Q: Is it okay to be scared?
A: Absolutely. Getting help is supposed to be the greatest thing you can ever do, and there are supposed to be circles of cheerleaders following you around wherever you go, and everything is supposed to be perfect and amazing and rainbows and smiles. Well, getting help is a great thing, but more than that it’s a brave thing. We’re still in a world where it’s often an uphill battle to get help for mental illness. I wish to god it wasn’t. I wish that mental health was treated like the rest of healthcare, and that people didn’t have to be afraid and anxious to seek help or even avoid seeking help because they’re afraid they won’t get it. I’m going to be real with you – getting help can be hard work. I will cheer for you and assure you that you’re not alone, I will share everything I’ve been through in hopes that it helps, but I can’t tell you that it will be smooth sailing. I do think you’re worth the fight. I also believe that you can be strong and brave and terrified all at the same time. And I think it’s worth asking for help, even if it looks like just showing up in a doctor’s office, not making eye contact, and saying the word “Help.”

These questions and answers are based on my own experiences, and my own fears before I got into treatment. I have not had a smooth ride with mental illness or its treatments, but I have met some really good people along the way who have helped me a lot. I’ve met some good people who haven’t helped me too. And I’ve met some idiots. But so far I haven’t given up on myself, and I don’t think you should either. I hope that at least some of this is helpful.

If you have any other questions, or if you have any other insights from your own experience that you think might be helpful to someone else, leave them in the comments or you can e-mail me. I don’t claim to be an expert, but between all of us I bet there’s a lot of really good information out there.

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TMS (Transcranial Magnetic Stimulation)

Transcranial magnetic stimulation, or TMS, is a new, non-medication non-invasive depression and anxiety treatment that uses MRI waves to target and stimulate areas of the brain responsible for regulating neurotransmitters. Dysfunctional neurotransmitter communication is the closest known cause of depression and other mental illnesses, so TMS is a way to potentially treat the source of the problem without using medicated stimulation of the same neurotransmitters. TMS is performed without anesthetic and is reportedly pain free. Insurance will cover it if at least 5 other medications have failed to treat depression successfully. It’s a less invasive procedure than ECT, which is more intense treatment and is done under general anesthesia.

It does not appear to be a magic cure that Pharma’s been keeping a secret from us because the success rate is about 30%, the same as for medications. Supposedly if you have tried several medications without success TMS is less likely to work for you. In the last two years alone I have failed on at least 5 medications. I’m currently on six different medications that are helping marginally but creating serious side effect problems.

The weight gain that is common with some antidepressants and bipolar medications is causing more serious problems than just making me uncomfortable. The medications make me crave sweets and my appetite is through the roof. It’s bigger than self discipline. I’ve gained 30 pounds since starting two different medications, and because I am so hungry all the time my blood sugars are out of control. 400 – 600 mg/dL high. Daily. I should be able to just not eat so much, and I should be able to control myself since it’s actually making me face my own mortality, but I can’t.

I need something to clear itself up – the bipolar, the depression, the insatiable hunger, the grief, the foggy brain, the sleep problems, the kidney damage caused by not only the lithium I’m taking but now my extremely high blood sugars. Something! Help! I’m tired of watching myself die.

So I’m trying TMS. The success rate isn’t as close to 100% as I would like, but it’s not going to hurt me. It might be a little expensive, but insurance covers part of it. Incidentally I learned that TMS can treat anxiety too, but it’s not approved by the FDA. This means that insurance won’t cover it and it’s around $11k.

The treatments take 30 minutes a day, and you go every Monday through Friday for seven weeks. I’ll be awake, there will be scalp discomfort for the first few days and I might get a headache afterward for the first few days. That’s the worst of it. If this can help me get off even one of these meds I’m on I will be grateful. I’d like to get off most or all of them, but I’m cautiously optimistic. It’s something I’ve never tried, and I’m pretty damn close to having tried everything and still feeling very depressed. It’s my normal. What if it could be different?

I’m willing to venture an answer to that question by trying TMS. The answer might be “It can’t be different,” and I’m prepared for that. If it’s anything other than that I’ll be thrilled. I am so tired of trying the same things over and over and getting the same results. I do not want to accept that this will be the rest of my life.

I am going for a final consult with my doctor today. Assuming I go forward with the procedure I will report the progress and the things I learn along the way. Here’s to voluntary brain zaps!

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Plan B

How many people are really living out their Plan A in life? How many people are doing what they always planned to do, living life the way they want to, haven’t had to rebuild themselves, maybe a few times, in their life? If those people are out there, just give them time. Their Plan B is coming. Personally, I ran out of letters for the amount of backup plans I’ve had to scramble together in my life. Even if I prepare for something, it often proves to be a wasted effort.

I recently got back from a vacation that involved a two day road trip. On the way back I stayed in a hotel after about 13 hours of driving, and around 3am my insulin pump alarm woke me up saying that the pump was dead and needed a new battery. If I don’t have insulin within a couple hours, my organs will start shutting down. So I guess it was important that I change the battery, or whatever.

I had packed batteries for just such an emergency, but it turned out I had AAA when I needed AA. I was going to have to come up with Plan B. I drove through the Virginia/Tennessee border in the middle of the night by myself without a bra. To my intense relief there was a gas station down the street from the hotel and I went in.

“I’m sorry, I can’t take any customers right now, I’m doing my nightly close,” said the gas station attendant. But what if I might literally die? Sorry, won’t have registers for another 20 minutes. Oh, I am sooo going to write a blog post about this, I thought as I grudgingly started forming Plan C.

There was a Wal Mart down the street from the gas station, and while driving there I chickened out and didn’t go in. I had nothing to defend myself with, and I felt there was a distinct possibility I would need to. To keep the anxiety at bay, I did, however, speculate about what kind of people would be in a Virginia Walmart at 3am. 400lb men in motorized carts and long, unwashed hair. Shift workers buying bulk Cup O Soup, being neither terribly happy or terribly unhappy with their lives. Groups of twenty year olds with neck tattoos glistening in the methamphetamine sweat, wearing wife beaters and dirty black jeans. I get really specific with my speculations.

I asked my GPS where the next gas station was, and it said Sure I will save you! Let’s go four miles! But after 12 miles of driving through unlit woods with sketchy looking streets, I ended up on a highway and recognized my exit for the hotel. In other words, back to exactly where I started. There was the gas station I just left.

I figured I might as well go back in and see if she could unconstipate her customer service. Fortunately she could take my money that I gave her in exchange for saving my life. She went from Plan A to Plan D in a matter of 30 minutes. I went back to the hotel and changed my pump battery and got a shaky 45 minutes of sleep before I had to get up and hit the road again to come home.

The thing about losing your Plan A is that while it’s a surprise and it’s jarring, life doesn’t stop there. I don’t know how long I started at that gas station attendant with my mouth open when she told me she couldn’t help me, but also there was that thing about how I would die without making a new plan. I considered shoplifting, but I’m not that graceful and didn’t want to get arrested while not wearing a bra. So Plan B makes itself. Same with Plan C and etc.

I was anxious but didn’t panic because batteries existed somewhere, I’d find them one way or another. Another thing I have learned is that I will be okay, no matter what happens.*  I’m not dead yet, and until I am I will be okay. I’ve faced my greatest fears, more than once, and I am still here. Being out of batteries in the middle of nowhere can’t scare me anymore.

*Unless it’s the zombie apocalypse, in which case I’m screwed.

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The Greys and Army Greens

Why does reading about someone who has bipolar give me a start? Why does hearing about someone who committed suicide make me feel just a little bit jealous? It doesn’t mean I’m a bad person and it doesn’t mean I’m crazy, that’s just the nature of triggers I guess. I’m reading a book that mentions someone’s family member who had bipolar (by the way I’m careful to say “has” bipolar as opposed to the more commonly used “is” bipolar because our conditions do not define us) and refused to take medications because they didn’t want to be “dulled.”

The person ultimately killed themselves, and it sounds like they had a lot of struggles in life. I can relate very much to not wanting to be dulled. Taking the relatively large number of medications, in addition to making me fat, turn my brain into fog. My feelings are dull and I don’t get as much enjoyment out of things I normally enjoy, but when I feel sad I feel it too strongly. The thought of getting off my medications just so I can feel something again is very appealing. But the consequence of doing that is that I will probably end up either hurting everyone I love, putting myself on the streets, or dead. At least I would feel life again, though!

I’m not going to go off my meds, but it will never stop sounding appealing. I think of the days when I wasn’t on medications or wasn’t taking my meds like I was supposed to, and though I had huge mood swings on a daily basis, I felt love like fire, I felt joy doing the things I loved, even the lows that I felt so strongly made me feel alive. I was connected to life. Sure, I wasn’t sleeping or eating much, and I would have days at a time where I would cry in bed barely getting up to pee much less function like a human. But that’s part of what made me feel alive.

Now I’m taking all the handfuls of meds like I’m supposed to, but I feel a muted sense of being alive. There are many things that make me happy: my boyfriend, my dog, my friends whom I cherish. The love for those things runs deep. But everything feels muted. I still have the mood swings, but they’re not as extreme. The “even keel,” the “baseline” doctors want me to stay on feels Okay. I am Okay. Life doesn’t have the reds and blues and purples and lively yellows anymore, just greys and army greens. My memory is shot, focus is a challenge, I often feel like my personality has gone into hiding, my hands shake, my energy is in short supply and I’m often too tired to function, but I am Okay.

Not fantastic let’s-get-up-and-go-I-don’t-care-where. Not terrible, hopeless, I’d be better off dead. Just okay. I am so lucky to have people who care about me and are always there to help me through the days, even the days when the high/low extremes come back and I’m not Okay anymore. In the meantime I’m living in the fog and reminiscing about the times when I felt like I was living in brighter colors.

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Poetry in the Wild

I went on a hike through the forest the other day and I found this tree about a mile in. It says:
“It’s nice to know
That you’ve got so many choices
So many paths
So many things
To fiddle and play with
Enough so that you can drop one
And pick up another
No matter how you choose
You’re gonna be happy
 
It’s nice to know
That I’m the one
You chose to drop.
But that’s okay.
‘Cause now I realize
For now and forever
I am your loss and he is your gain.
So make the best of it.
You got one life.
So make your choices now
Before it’s too late
 
It’s nice to know that I can walk
Or even crawl
And – – – run
Well I keep going
Someday you’ll be a wall
And someday I’ll pass you.
 
And it’s nice to know
That I’ll never look
Back”
 
– The Forest