Every year I start with this idealistic view of new beginnings. I will write blog posts every day, I will check Twitter for inspiration and content, I will be sane enough to help people through my writing…This year that all went to shit before I even began.
In October my medicine got changed from Seroquel to Seroquel XR, which was a life changing event for me. I can eat gluten again, my sleep schedule is much less dictated by my medicine, I feel more alive, more human than I have in years. So many years ago standard Seroquel changed my life in the exact same way, I had no idea life could be better. It was almost like when my husband went from standard hearing aids to his BAHA implant, completely a game changer. Except (I hate that word, it always means something bad is coming) Seroquel XR is not scheduled to become generic until May, thanks to the legal battle fought in 2012. The insurance filled the first month as a “courtesy” then denied additional refills, forcing me to be off medications for more than a month. The whole system is fucked up, I knew that. What always gets me is I have experience navigating the system. I get frustrated and want to give up, but what do people do that have no experience or legitimately cannot function enough to fight back? Blows my mind that we make such a big deal of gun safety and mental health is mentioned EVERY SINGLE TIME a mass shooting happens and someone like me still has to fight to get the medications that keep me from being looney toons. Ugh.
So anyway, I finally got my meds back in December. I was off of work for 12 days on vacation. Life was busy with Mixing Spirits, really it still is but hopefully that’s getting under control now. We got so slammed over the holidays. Completely blind-sided by how popular our products were. Now we are fighting to stay above water as frustrated customers want to know when their glasses are shipping. We’re almost to the end, but it’s been a really rough few weeks. I’ve been trying to help, but answering frustrated customers when you’re collapsing into a little ball of hatred in your head is a really terrible idea.
Speaking of that little ball of hatred…I forgot how much that place blows. It’s been happening for a while, that voice that says I need to push harder. I’m not doing enough, I’m not helping enough, I’m not good enough. It starts at work so I push harder. This time it happened at work and at Mixing Spirits. I pushed harder, I worked until I wanted to die. Which is ultimately where that leads. It’s been a long time since I’ve had legitimate end game plans. That also is much worse than I remember. I rewatched part of Elizabethtown. (“I’ve been the substitute person my whole life”) The more you want to see yourself as the third wheel the easier it becomes reality.
I have a really hard time understanding why people want to be around me. I always feel like I’m too serious to have fun or be silly, like an anchor that weighs the whole experience down. At work I feel like I’m not smart enough; unworthy of my position. I don’t ask enough questions to really get to know someone, but when I do I’m too nosy. I’m going to work on being nosy again. Last night was excellent, I got to spend one on one time with one of my favorite people in the whole world. That one on one time has catapulted me from the black hole I was entering into the living world. Thank goodness. I can’t even begin to describe how horrible that black hole felt after so many years of being away. I hope I can get out of it’s reach entirely this time.
I honestly don’t remember what I wrote in my last post. At this point it’s moot. Three weeks ago I was hospitalized at an inpatient facility for four days. Then I spent five days immediately following that at an intensive outpatient program, here they’re called partial programs because you spend part of your day “in the hospital” and part of your day living as normal a life as you can. I’m struggling to keep my head above water, but the program has helped quite a bit. Also, I’ve been having trouble with school. Trouble catching up, trouble knowing what my options are, trouble talking to the right people. That seems to be on the upswing though. I’m slowly learning how to navigate the system, learning who my allies are, learning to lean on them as much as I can.
The psychiatrist I’ve been seeing not only increased my medication, but also wrote me a prescription. A little over 8 weeks left before Beastly gets here and I finally have found a doctor willing to stick his neck out for me. Not only that, but he’s also smart and doesn’t sugar coat anything. After Beastly arrives I will be scheduling CT scans and MRI scans to make sure there is nothing wrong with my neurological systems causing my hallucinations. It’s apparently really rare that hallucinations like the ones I experience happen in mental illness. Not unheard of according to my doctor, but not likely. It’s either neurological or something repressed that I need to work out in therapy. Who knows what that could be, probably something my asshat of an ex did considering they only started a few years ago when I was under extreme duress.
One of my goals is to update this blog more regularly. That’s always one of my goals, but I’m developing a system of when and how to do things that I hope will make this a higher priority. Writing about mental illness, different coping skills, the trouble I experience as a student, and soon as a parent, will hopefully keep my mind focused on recovery rather than desperation.
Thank god I have an amazing support system. I don’t know what I would do without them.
Asking my seroquel where it went is, of course, a silly question. For one thing, it’s an inanimate drug. For another I stopped taking it because of Beastly. Oh Beastly, just you wait until I can tell you all about the sacrifices I have made for you. Most of them will be incoherent, because I will likely scream them at you when I feel like crap, but they will be true. Each and every one. Until your dad says they aren’t. Then he’s right. Because he’s the sane one.
Anyway, the point of this post is not how sane or insane I will be when I ultimately tell my child that I went off of the medication that prevents hallucinations for their safety. The point is how much better I feel after only one day of having that medication back. When I saw the doctor a week ago Thursday they gave me risperidal. Which was lovely, and helped a little. When I saw the geneticist last Thursday I let them know about all the continuing problems, even with the risperidal. That doctor will forever be in my heart as the nicest doctor I have ever known. He told me that being off the medicine during Beastly’s first 10 weeks was great, but now there is no more development happening. And the risk of not having the medicine is so much worse than having the medicine. If there’s no me, there’s no Beastly. As a result I have gotten my seroquel back.
It feels like there has been a weight lifted off my shoulders.
***Originally posted on Blogger 06 Sept, 2011***
Every thing I read online keeps saying, “stick with it, when you find the right medicine combination you’ll feel amazing!”. I have been through the ringer with medicine for the last 10 years. They keep screwing with it now, I swear if I ever find the right combination I’m going to be 150 years old. It feels hopeless.
Right now I am supposed to split up my Seroquel and take some during the day. This is not possible at all. I’ve had the trifluoroperizine dose increased and I am still seeing a guy outside my window with a knife. The prazosin was increased to help deter the dreams even more, and I’m waking up wondering how I got back home because I was obviously at school picking up books on genetics. Obviously Julia just told me Henry is going to school in Rockford with their little baby, why isn’t she going along?
I’m tired all the time because sleep brings no relief from my daily trials and tribulations. On top of that the medicine does nothing but make me pass out.
I’d say the worst, though, is the paranoia. It’s never stopped. My therapist said I need to decide what behavior I want to modify and that is enemy number one. I’m convinced someone else would be better for Terry, that he really should have nothing to do with me. That my friends should want nothing to do with me. I want to slide into a life of nothingness, no people, no animals, no me, to protect myself and everything around me. Slowly my thoughts are turning back to everyone being better off without me. Slowly the idea that I need to find an escape is creeping back into my life. Enemy number one is these thoughts. They need to be purged and when I’m so tired from the medicine I don’t know that I can make them go away. Though, that tired nature means I probably won’t have the energy to act on those thoughts, it really only takes one burst of energy and one well thought out plan and it will be done. Unfortunately, it would likely be without warning. I can only hope that burst of energy leads to a phone call instead of action taken. There is really not a guarantee that will be the case. So, enemy number one must be fought like hell.
And maybe someday the therapy and the medicine will do their job. In the meantime I am continuing to stumble through life, school, and trying to get my head on straight. Hoping like hell that my short term disability will see this as enough to pay for my time in treatment.