Did I Make Myself Sick?

The last few days have seemed like this never ending eternity of nausea and anxiety. I got sick a couple nights back, threw up, felt nauseous the rest of the day. I started coughing hard in the evening and threw up again… not sure if it was my stomach or if it was my whole body tensing up in coughing fits. Not sure if it was a bug I caught, or if I’m really SO anxious about Monday’s appointment that I’ve made myself ill.

Monday is my first appointment with a new neuro-ophthalmologist for my intracranial hypertension. You’d think with all the doctors I see, all the appointments, all the new ones, I’d be better at initial appointments. I’m not. I’m a mess. For me it’s the interview process on both ends – he needs to know if he can treat me, I need to know that he can understand my needs during treatment.

Any first appointment is like this. What makes this one hard is how long waiting periods are to make initial appointments and this is my brain… I can help a psychiatrist understand that I know my conditions and my body because these are problems I’ve dealt with for years. It’s harder for me to convey my level of self awareness of my symptoms to a doctor that treats the physical side of things.

It’s paralyzing, this particular fear. That’s the only reason I feel that it could even create physical symptoms. The fear grows as the day draws near. I have about 40 more hours freak out about it. I’d been getting painful panic attacks for days even before I got sick. Shortness of breath, pain in my chest, etc… Those ones where you know the pain will go if you can just calm down, but the pain is freaking you out more. I hate those.

I haven’t been around and I make no excuses. This is what the last couple days and even weeks of my life look like. Fear, pain, throwing up, coughing til I cry. Let’s be honest, it sucks, and it drains my motivation.

So, appointment on Monday. Update on my condition or treatment options on Monday night or Tuesday. Stay tuned as we get answers.

~Brutally Honest Eccentric~

If we expected it, it wouldn’t be “the unexpected.”

It has been a few days since I’ve really felt able to string sentences together into coherent paragraphs. I am not sure I am really even there yet, but since this is part of being me, I figured “fuck it, let’s try.” It’s near 4:15am which is a normal time for me to be awake, or was, but my sleeping has decided that stress is now in charge of its schedule. My ideas on when I want to be awake or try to sleep have absolutely no standing.

Along with waiting for my Neurology appointment (which is about a month from now) for the brain pressure thing, I had my lithium changed because the medication I had been on affected the levels, so coming off it did as well. My psychiatrist is amazingly thorough and although it feels obnoxious to go through, he orders the necessary blood work to go along with my medication level tests. This means fasting – which SUCKS as a caffeine addict. It means that every time I need my lithium checked, I invariably need to plan for the withdrawal headache and thus need to plan my test for a time I can get there without worrying about spending extra hours in pain.

Usually there’s nothing of concern in the tests, so, honestly, I don’t expect phone calls first thing in the morning the day after my test from my psychiatrist’s office. Yesterday they called. Apparently one of the levels is high in the metabolic panel he did. If you take meds, you know some of them are going to strain your system, especially over time which is why these tests are so important. This particular test indicates my kidneys may not be happy with me.

I take over half a dozen different medications a day. The questions of how it might affect me in the long run have always been in the back of my mind but this is the first time they’re front and center. I had the results sent to my primary care doctor and I’m waiting on them to give me a call and let me know how we’re moving forward. I probably need another blood test. Not looking forward to another caffeine withdrawal morning but it’s worth it to find out what’s going on.

So, I have lots of questions and not enough information for answers yet. My mind and body gang up on me to respond to this with full on anxiety for hours while I’m awake and needing to go to sleep with no notice. I’d already started this when I knew I was getting pressure headaches again, the whole hyper-alert and passing out game is just now more insistent on my cooperation.

I think that’s something many people don’t always associate with anxiety, they think it’s intentional avoidance of issues or tasks. Sometimes, I don’t actually WANT to take a nap, I really want to try to get things done, especially when they freak me out. However, if I get overwhelmed, sometimes my eyes just start to close. I could down a full cup of coffee and still just pass out like I haven’t slept in days even if I only woke a couple hours before. It’s a defense mechanism, I think, my body trying to keep my mind safe, but it’s really frustrating when you need to take care of something even if it scares you.

For the past few days, I’ve been oscillating between the hyper-aware and passing out, so it hasn’t left me a lot of time to really focus on any one thing for long. Even just writing this has taken what feels like forever because my eyelids are starting to pull themselves down. People say ‘Expect the unexpected’ but we never can, we just have to hope that we’re prepared to cope with whatever the unexpected might be. I’ll work on figuring my new one out. I hope you continue to find ways to cope with yours.

~Brutally Honest Eccentric~

p.s. I don’t need or want “natural” remedy ideas for my illnesses. If I need to come off of medications, I will discuss all options with my doctors. If homeopathy worked for everything I had, I wouldn’t have gone back on medication a dozen years ago. I appreciate the efforts of people that try to offer these solutions but they are not for me.

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**

“In rare cases…”

I always get those symptoms on medications… “in rare cases.”  They don’t feel so rare. I also seem to win those undesirable lotteries with diagnoses.

I have been getting headaches lately. Searing pain behind my eye, sometimes pushing on the base of my skull. They scare me. For most people, headaches are something you take an OTC medication for and they dull or disappear. For many, migraines are a severe problem, light and sound sensitive, lasting days, the pain barely touched by prescription medication. For me, well, until I can get them identified, these pains are terrifying.

In 2015, I got what we assumed was a migraine. It lasted weeks. After the first few days, I went to the doctor who sent me to the Emergency Room because my blood pressure was skyrocketed – stroke risk levels. After hours and passing out in the hospital with IV fluids, my blood pressure decreased down to “normal” levels. The pain was still there but it wasn’t AS bad, so they sent me home. I made a neurology appointment as directed. The waiting times are horrible. Five, six weeks out – after my second trip to the doctor, who again sent me to the ER – my neurologist finally could see me.

We talked for a short while about the pain I had been experiencing non-stop for about 45 days, and all the pretty things I was and was not seeing. I couldn’t look at a screen, couldn’t see outdoors… I had looked up “auras” weeks earlier because I knew sometimes people with migraines had vision issues. By now, I had every ocular aura I knew of – dancing lights, halos, I couldn’t see through the bright white spots and greyed out circles. The doctor got his little light and magnifier and checked my eyes. He asked if anyone else had and I said no, asking why. He said, staring into the back of my eyes, “There’s nothing back here that resembles human anatomy.” I didn’t know if I should laugh or cry.

He wrote some things down, explained it all to my fiance because I was a mess, and off we went for a third trip to the hospital. This time was different though, my neurologist may have had a strange way of letting me know what was wrong, but he did make sure that we had everything we needed. He even left his cell phone number to call and let him know that I was being taken care of as it would be after hours by the time I made it to the hospital. I owe him more than any copay could cover.

This time I was fully admitted. The diagnosis: Pseudotumor Cerebri (PTC), or Idiopathic Intracranial Hypertension. I had high brain pressure. It took so long to diagnose that I had lost a third of the vision in my left eye and it was months before it returned. In fact, it took so long that we thought it might be permanent. PTC creates swelling of your optic nerve. It caused fluid to enter my eye that shouldn’t as well as some minor hemorrhaging inside.

PTC is a “1 in 50,000 people” kind of thing, so please if you notice symptoms like what I described above, don’t panic but get it checked anyway to be safe. I know sometimes we read something and end up with psychosomatic issues. This isn’t common at all. It is, however, potentially recurring. Especially when one comes off the medication that’s been controlling it. I will be making an appointment with my regular doctor, and then the others if I need to. My headaches don’t feel the same as they did back then but I think my fear is making things worse. Fear sucks.

This is where my mind has been lately, well that and dealing with the fact that my mood stabilizer level is low. When I pull myself together a bit more, we’ll talk about doctors. More specifically, the benefits of being assertive. If you have any questions, please feel free to comment or contact me. About anything really. Eventually, I want to be able to help people through my blog, not just myself, so if you have issues or situations you want me to try to address, let me know.

~Brutally Honest Eccentric~

Why “eccentric”?

Many words mean abnormal or mentally ill. Most of them have negative connotations, but I like eccentric. I  also think of myself as “emotionally unstable” and while that’s also something I don’t suggest calling me in the middle of an argument, it’s pretty accurate. I have been diagnosed with bipolar disorder, borderline personality disorder, social anxiety, general anxiety, agoraphobia, depression, and some physical stuff. Diagnoses change over the years, not all mental health problems are life long. Some, however, like bipolar are forever.

At sixteen, my mentor died from a heart attack at the end of the school year. I couldn’t go to his funeral because I was in Germany (three month private exchange). I cried so hard that I couldn’t even explain to my host family what was wrong for two days. I couldn’t say it. I couldn’t write it down. That fall, I started having severe crying fits I couldn’t explain, couldn’t stop, couldn’t understand at all.

During one such bout of misery, as the rain fell, so did my tears. Apparently a couple hours had passed. My parents thought I was in my room. They didn’t realize I was outside, I didn’t realize it had been hours. This was the day psychiatry entered my life. I was immediately diagnosed with bipolar disorder. No one was surprised, not friends, especially not family.

I was put on medication and took myself off pretty quickly. I wasn’t ready to know I would be on medication for the rest of my life. I made myself a deal: If I got so bad my family, my work/schooling or my relationships were severely affected, I would get professional help. At 24, I had a breakdown. I just started crying at work, for two hours with no reason we could find. One of the girls there asked me about every aspect of my life we could think of. Everything was fine… except me.

I went back to psychologists, psychiatrists. The bipolar was joined by borderline when I was inpatient at 27. I had also become agoraphobic. I couldn’t leave the family property without someone close to me. There were more diagnoses, and suicide attempts. Luckily they failed – well, some of it was luck. One of them I had my mother call an ambulance because I realized I would be hurting my brother and sister if I succeeded.

I’m not ashamed of any of this. This is my past. This is my path and how I got to be who I am today. We will revisit my mental health repeatedly. It is a major part of my life and who I am. On bad days, I might not feel like this is who I want to be, but on good days I know that I am who I need to be. I invest effort into bettering myself, and helping others and that is important work.

~Brutally Honest Eccentric~