Life after Neurology, or during it

I may have underestimated how much I have going on in my life currently. I said I would be back after my crash, but then Monday I had my neurology appointment and Tuesday was therapy, so they each came with their own downtime.  We’ll get back to my Sunday and my crashiness another time. Right now my high brain pressure is what’s overtaking my thoughts, so I’m going to go there for a bit. My neurologist, Dr. J., is consulting with another doctor, Dr. M, who I may be seeing as well to get his thoughts on my condition and my treatment issues.

I have to, at least temporarily, restart the medication that kills my sex drive as we don’t want this to worsen while we work on finding a treatment plan. The reality is I may have to continue with that medication the rest of my life. Not something I consider with any sort of happiness, but the reality is that between my vision or my sex drive, I would rather keep (both, but if not…) my vision. So, back on the pills I go, and immediately notice another side effect that I hadn’t realized. Yay. Trading pain for misery and pain isn’t high on my list of things to do, but we do what we have to in life.

Dr. M is a neuro-opthalmologist, so basically brain/eye issues, he works mainly across the river but has office hours on this side. I didn’t know whether or not there were any neuro-ops on this side, honestly, which was why I went to the Dr. J in the first place. He works at the same practice as the man that diagnosed me five years go – the one that retired… If you’re looking for a specialized specialist, it feels prudent to get the referral from someone else in the same field.

Explaining my problem to Dr. J. I broke down crying three times, maybe more… it’s a good thing they keep tissues on the desk. I was trying to explain the difficulties in making it to appointments across the river, the fact that although I have gotten past a lot of my agoraphobic issues, I can’t travel alone to the city yet, the difficulties with the side effects, how terrified i was that this was still happening…

I had to stop myself and just explain that I’ve been having a really rough month, that although IIH was plenty reason to be upset, I’m usually more composed in these situations. He’s a nice doctor, he just nodded and said “Well we get through it, right?” Right. So apparently, for my condition there are medication treatments (the other easy one of which I’d already been on for psych reasons and had an adverse reaction), there is putting in a shunt – which is actual brain surgery, and there is a type of eye surgery that I do not know much about nor do I know if that’s even a possibility for me. These are why I need to see Dr. M. … after I get brain scans and follow up with Dr. J.

I am scared. Often IIH (idiopathic intracranial hypertension) will resolve itself. In many patients, it does. For some of us, it doesn’t and then they try harder to find out why – is it a medication, is it something else? We don’t know. So right now my brain is acting like there is a tumor in it, even though there is not (hence the other name for it – pseudotumor cerebri). I am scared… That kind of scared where you just want to curl up in a ball and cry. But I won’t, not yet. I have too many other things to handle. Medications, finding a psychiatrist, discussing blood tests with my GP, grieving the loss of a friend, trying not to isolate myself even though I want nothing to do with people.

I may be preoccupied with my health lately, and my own life situations, but I feel like I have enough going on that it’s a valid way to react. I am used to putting myself aside for others and right now I can’t. The situations going on could land me in the hospital if I’m not careful so I need to put myself first. If others can’t see how this is a healthy way to cope, that’s just not my problem. Luckily, most of my friends, if I don’t respond to their messages, understand that I see and hear them, I just can’t invest myself right now. I have really good, very supportive friends. I am lucky in that while my health may be a problem, my support network is part of my solution.

~Brutally Honest Eccentric~

Invalidation.

Yesterday, I was told that I don’t care about anyone but myself. This wasn’t by some random acquaintance or anonymous internet troll. I got told this by my mother. Last week we got into an argument, yesterday after a week of not speaking, same argument. She was telling me how to handle my doctors. I was telling her that I had it handled.

Any of you with chronic mental illness or chronic pain, you know the multitude of appointments it comes with. You know that sometimes you need to change treatment plans or doctors. I need to change psychiatrists and I am also going to a neurologist on Monday to work on a treatment plan, if possible, for my brain pressure that causes migraines. I’ve had all of this going on for weeks to months. The psychiatric issue has been half handled, the neurology is scheduled. Somehow I was being told that I’m not handling it correctly, that I’m not listening and that – and this one gets me good – I’m going to the wrong doctor for my brain. The reason that last one gets me is that she’s known about this appointment for six weeks.

Sometimes, yes, I do ask for help when it comes to where to go when I am unable to do it myself. This time, however, I had a plan. I had appointments. I hadn’t asked for anything. For some reason, this plan that my mother had been made aware of weeks earlier was not good enough.

This has happened before about a lot of things in life. It’s probably happened to you as well. You make a decision and people support you and back it and then they change their mind. Maybe it’s about a job and your best friend doesn’t think you should quit even though you already put in your notice. Maybe it’s about a guy and your dad doesn’t approve when you get engaged… Whatever it is, all of the sudden it’s as if your choices aren’t good enough. Obviously, being treated this way is going to create disagreements.

Sometimes the change of heart is because of something that is happening or has happened in the other person’s life. It’s okay to change your mind and change your views. It’s not okay to invalidate someone else’s choices because you change your mind though. It’s not fair to either of you. If you want them to hear you, you may need to hear them too.

I work hard to advocate for myself. I work hard to advocate for others. I am assertive when it comes to anyone’s healthcare. I want us to find the professionals we need to get the treatments that are necessary. I have also spent the better part of seven years running peer support on facebook. I have stayed with family to help care for them when they were unable. I have acted as extreme emotional support for people who have been unable to get it professionally. I have shown up on the doorstep of a suicidal friend so they would not be alone. I do these things partly because I can, I have the knowledge and capacity. I do them because it helps me cope with not working. I do them because I love.

So, now, I’ve been treated like I can’t deal with my own medical treatment and told I don’t care about anyone but myself. Honestly, I have been in pain for over a month almost daily. My medication was incorrect due to a differing opinion with a doctor, and a friend of mine has passed away. I don’t really have the emotional capacity to handle the problems of others that I usually do. This doesn’t mean that I don’t care. It simply means that I need to practice self care right now and have boundaries.

I draw the line at anyone invalidating my choices in life, my choices in healthcare and my opinions on how our interactions are going. Why am I telling all of you this? Because people WILL invalidate you in life, and I want you to see that it’s okay to stop letting them. This is me trying to explain to you that it is okay to make your own choices and your decisions ARE good enough.

~Brutally Honest Eccentric~

Today hurts… so,

Can it just be enough?

Can it be enough for you if all I do today is love you? If all I do today is smile through the pain and give you a kiss? If I can’t think straight through the pain and I’m not sure I want to not think straight through the pills? Can it be enough if I just exist today?

If I can’t be there for you when you message me? Or if it’s been weeks and we should talk but I can’t dial? If I see that you’re hurting but I can’t explain that I care? If I am here and you know I’m here but I feel a million miles away?

Can it be enough that even through the pain I am still pushing to move forward?

I know there are things I should do, or would do if I were having a better day. I could shower, or maybe tell you that everything is going to be okay. If it were another day, I could do more than puzzle games and passing out. If it were a better day, I could actually giggle at your jokes, reassure you through your stress, and remind you how strong you are.

If it were a better day… but it isn’t. So, can it be enough for you if all I do is make it through to tomorrow?

~Brutally Honest Eccentric~

Pain, compassion, and frustration

As I sat here contemplating a DIY lobotomy, trying to figure out whether or not to take the pain medication I was prescribed, I realized I had therapy in a couple of hours. I, then, tried to decide whether it was better to go in severe pain as it coursed through my head like a pulsating rod from behind my right eye into the base of my skull, or go while I was loopy and entertained, but definitely not in a position to absorb information. I called to cancel last minute. Well, it was still a couple hours off but I do not like to cancel at all, especially the day of.

For me, creating a doctor’s appointment is creating an obligation and I try so hard to keep all of my obligations regardless of my mental and physical states. I try to make the necessary phone calls, show up at the necessary times. I try to drink enough water, to take my medication, to eat. I try to go grocery shopping through depression or anxiety because I do not think it’s fair to let my disabilities take away my ability to at least try to function on some level.

Days like today frustrate me. There was little I could do, I was not going to be able to function at the mental level needed for an effective therapy appointment. I could have wasted both of our times, but why? My neurology appointment is still a couple of weeks out and, as I am not having any ocular auras (and my kidney function labs were redone and fine), I have not gone to the hospital. This does mean that we are treating my intracranial hypertension (high brain pressure, there is an issue with my cerebro-spinal fluid) with pain management as long as it’s not affecting my sight. I honestly thought I could keep it from affecting my other obligations.

Obviously, I was wrong. The medication has worn off and although I can still feel pain, it’s a pain I can tolerate and maintain some function through. Six years ago, before this was ever an issue, it’s a pain I would have taken OTC painkillers for and whined about on the couch until it dissipated. Our pain tolerance changes with our life.

The same is true of emotional pain. What we could not handle ten years ago may be something we can cope with now, or due to manifesting disorders, or even simply new stressful situations coinciding with it, we may not be able to cope with them as well. All of this varies with time, situations and especially from person to person. While I would not expect a random stranger to be able to cope with this headache pain easily, this stranger may have already experienced worse pain and be prepared to handle it. It is as likely they have not, and it would temporarily incapacitate them until relief came. For all I know, you are experiencing the same level of pain right now.

Maybe I pass you in a parking lot, smile, nod, say “Good morning” and you reply with the same smile and greeting. Perhaps both of us are hiding immense pain behind that smile. Perhaps neither of us are. Maybe that cranky old man in line in front of you simply has his arthritis acting up and what you see is him coping with his pain. Not fair to the guy behind the register, maybe, but then the pain we experience isn’t fair either.

Over and over I see memes regarding not knowing the pain another is hiding or their struggles and it feels so cliche to write it, but at the same time, I have been in so much pain lately … Maybe you see me stare off during a conversation, you think I’m not listening, that I am ignoring you, but maybe it just hurts less if I let my eyes unfocus for a bit, maybe you’re sitting under a bright light and I just can’t bring myself to say, “Could you switch seats?” because I’m tired of my pain affecting me and I don’t want it to affect you.

All I really want to ask is for the benefit of the doubt, not just for me but for anyone you may encounter in your travels. You know my pain because I put it here on the screen. Not everyone is so visible with theirs. In this day and age of zero fucks given, I’m just asking that maybe you save one to give.

~Brutally Honest Eccentric~

Bad Days Happen.

Not every day is a good day. When you have mood disorders, no matter what medications your on and what therapy you have participated in, some things are going to break through. For me, it can happen when I’ve tried to mentally prepare myself for something for days, and yet what happens is unexpected.

Yesterday morning, I tried to call the neurologist’s office that I went to five years ago. I couldn’t remember his name, so I asked the receptionist to look it up for me. I was prepared for “He works in a different office,” or “He moved to California.” I thought I was prepared for the disappointment of not being able to see him again. She gave me his name and told me he retired just after I left last time. “Retired” was not something I prepared myself for.

For a lot of people, that small difference of “moved away” versus “retired” wouldn’t mean much. They both mean that he’s unavailable as a doctor currently. For me, I broke into tiny pieces. My voice changed immediately as I tried not to cry and as soon as I hung up the phone, the floodgates opened. I messaged a friend, I messaged a small group of Ingress friends. After being unable to stop crying after almost half an hour, I also texted my mom asking her to call me.

My Ingress friends, the women I left a note for as I could barely see through my tears, are amazing. I mentioned in my Ingress post (How I Got Out) how supportive my team has been. This includes when I’ve lost my shit completely. I hadn’t slept enough, the crying was making the pain in my head worse than it had been in days, and I had no idea how to move forward making an appointment with a neurologist.

Before I got in touch with my mommy (and yes, when I’m crying she’s still “mommy”), Lois* left a message describing the next steps I should take (with Superwoman* and Pretty Bit* agreeing). At the time, I could read the next steps, but I couldn’t actually get the information to stick in my head enough to work with it. When my mom called me back, she and I talked for a few minutes while she was at work. I managed to mostly stop crying, and she gave me almost the same exact information. After being a little prepared for it by Lois, I was much more able to comprehend and internalize the information mom gave me.

Basically, I need to call, make an appointment, ask to be put on the short list (waiting/cancellation list) and be prepared to go in with little notice in hopes that I can be seen sooner than six weeks from now. This seems like such an easy task to read it now, but overtired and emotionally drained from unexpected information and crying for half an hour and giving myself an extremely bad headache, this was an insurmountable task. When I first saw it, I felt like it was impossible, but I owe Lois many thanks because it was her preparing me that made it seem like I could try it later when my mom gave the same advice.

A lot of people don’t understand how something so trivial, like a doctor retiring, when we’re not expecting it can be so devastating. I can’t explain to you why it is, I can only tell you that it’s much more possible than people without mental health issues typically understand. I am lucky in that my support group is vast and includes these Ingress ladies. Pretty Bit kept reminding me to breathe and while at the moment even that seemed impossible, just being reminded is so helpful. Breathing is something we do automatically but the deep breaths that help us calm down are not, they are intentional and controlled.

I got some sleep, got the headache to subside in the afternoon. Milan*, one of the other women in the group I mentioned earlier, checked in and asked how I was doing. I was much better by this point and appreciated her support. While I have not made my necessary phone calls yet, I feel I will be able to today.

It’s okay to have depressive episodes. It’s okay to have bad days that break through your treatment. It’s okay to not be able to handle things sometimes. If this happens, though, please find your support systems. Talk with them, be honest, let them help you. We can sit and do nothing and tell no one and nothing will change, or we can try to ask for help. It is one of the hardest things we do, but it is also one of the most necessary. I will keep you updated about the doctor, and I hope you keep your friends updated on your struggles too.

~Brutally Honest Eccentric~

*Names changed. My life is an open book, but their privacy is important, if they wish it.
**Image is my hand – heartbeat ring from my sister, a reminder that life is ups and downs, green nails because my Ingress team’s color is green. 

Knowing they care is hard.

It’s hard being on disability. It feels like everyone around me has this piece of their life that I can’t really be a part of. In place of a job, I have pain management, medications, doctors appointments and trying to shower. People lose interest quickly. They can complain about coworkers or a boss each day for weeks and others will commiserate. When I show them my world, though, those days it’s really getting to me, they don’t know how to react. Often, people just don’t react at all.

This aspect of my life, the inability to share my life with people who do not go through the same things, it hurts. It creates a feeling of loneliness, of being forgotten. I know it’s tedious listening to me complain about issues that I’ve had for years or will have the rest of my life. I know it’s not happy. I know you don’t know what questions to ask, and some don’t want to. I know you don’t have words that will make things better so you choose to say nothing.

I don’t know how to fight the thoughts of “No one cares,” or “Why do I even bother?” I tell myself they care. I tell myself I matter. I tell myself a lot of things. It’s hard to shout into the void sometimes. It’s hard to say “My life has meaning and my struggles are important.”

Your struggles ARE important. Your fears are valid. Your emotions are valid. Mine are as well.

I have been having a really hard time lately. Most of my friends are used to my depression and anxiety issues. They are used to me having to disappear to recharge my soul so I have compassion and love to give to others. They are used to me babbling in hypomania and sleeping through emptiness. They are not, however, used to me in pain.

I am learning it is hard for people to switch gears. My general mood is okay but I have a lot of fear surrounding the pain that I have because the problem causing my headaches can also take my vision. I am trying to handle it but sometimes that means talking about it and it’s really hard to talk when it feels like no one is listening. I know my friends love me and care about me. Yours do as well. I know I am not a burden to those that love me, and neither are you. However, at times, I do not feel like these things are true. Tonight is just one of those times.

Please know you are always loved, cared for and are not a burden. It doesn’t matter if your friends know the questions to ask to help you FEEL like they care, the reality is they DO care. I want to say something uplifting like “stay strong” but really, you don’t have to be strong all the time. We will love you and care even if you need to melt down for a while.

~Brutally Honest Eccentric~

Doctors, Pain, Self Advocacy.

I had every intention of talking about the need to be assertive when dealing with doctors for this post. Please note, I did not say aggressive, simply assertive. It doesn’t do you any good to yell at them, they may stop working with you. However, standing your ground when you need help, when you need something changed, this is important. When your medications aren’t working or you’re still in pain when you should not be, when your side effects are not something you can live with… Tell the doctor and make sure you get them to understand you. You NEED to be your own advocate even if others are helping you.

I will go further into that another day. Today I am back stuck with fear and frustration. These headaches, well, I can’t tell what’s bringing them on or what’s getting them to stop. I believe that I am dealing with the pseudotumor again. By the way, it’s called a pseudotumor because your brain is acting as if there is a tumor there but it is simply the pressure of your cerebro-spinal fluid. It’s not a “fake disease.” It just has misleading symptoms.

I am going to try to reschedule my doctor’s appointment. I want to make it earlier, if possible. I will need referrals. I do not want to go back on the medication I was on for the last four and a half years. I need to try to find a different solution and I am sure that the specialist I used to see will only want me back on it.

There are definite side effects from it that affect my life, and there are issues that have come up since starting it that mirror those of my friend who also takes it. She and I were talking last night and comparing diagnoses we’ve received since starting the Diamox. If I have to go back on it, my vision is kind of important to me, so I will find a way to make that sacrifice. However, if there are other options available, I have to try.

We all self-identify as certain things. For some, it’s being a free spirit, or being creative. Some people identify as intellectuals, others as sarcastic comedic relief. One of mine has always been that I am a sexual being (oversharing is another, obviously). I just have been for as long as I can remember. I was writing erotica before my first kiss. Diamox takes away my sex drive. It’s like losing a piece of my soul. Some people will think that’s overreacting, however, consider how you identify. If you’re an avid reader, what if someone took away your ability to read? Or to enjoy it?

So, this is where I am. I need to see doctors. I need to find options. I need to take care of myself and I can, and I will. I will advocate for myself so that I can try to keep that “piece of my soul” and I will stand my ground. Doctors are amazing people, but they are still just human. So, even if the specialists I do see recommend the Diamox, I will be assertive and let them know that I want and need something different if there is any chance to handle it another way.

~Brutally Honest Eccentric~

 

**Disclaimer: I’m not a medical professional. Everyone reacts to medications differently, this is about me, not meant to be medical advice for or against any medications**