Please check out my most recent article on The International Bipolar Foundation (IBPF) blog. The article, Trust In Your Medication Changes, talks about how I manage and trust in my medications, treatments, and doctors. Please check it out.
You can find all of my posts on the IBPF website here.
My psychiatrist has categorized me as treatment resistant. Basically, that means that I don’t respond to at least two standard treatments. It means I’m non-responsive to the normal treatments that usually work for others. There are a lot of medications that I’ve tried that don’t work for me. I also tried ECT, which worked for a while, but after quite some time it became too much for me to handle.
No matter what, I keep trying, even if I’m not getting positive results. If I don’t try, then there’s no way to find a solution. By trying to work at it, there’s a possibility, no matter how big or small, that something good could come out of it. At least I’m only considered treatment resistant, and not treatment intolerant.
I have been taking psych meds since I was 14 years old. Ever since I started taking medication, I have always been on a lot of meds. I currently take eight different psych meds, plus other medication for my physical health. I’ve spent more than half my life on medications, and I’ll probably spend the rest of my life taking medications.
Sometimes the meds help and sometimes they make things worse. Medications always have side effects that need to be treated. It’s a pain in the butt. Meds can cause both physical and mental changes. They tend to change the way I act, which is helpful for bipolar treatment, but sometimes it goes too far. I feel like the medications change who I am to begin with. The mental changes that take place are hard to deal with. Right now, I don’t like to go out in public unless I have to and I don’t enjoy things I used to care about. This sounds like depression, but it’s been this way even through manic episodes. Maybe it’s part of the PTSD. I can never tell what’s what anymore.
Will I ever know who I really am? Am I just going to continue to change depending on my medications? How much change is good, and how much is too much? These are questions I ask myself all the time. I was a different person when I was younger; I was social. Now, I’m nothing like that. I know a lot of it is because of my bipolar disorder, but I wonder if some of it is because of the medication as well. Will I ever really know? I guess I just wonder what’s really me and what’s because of the medicine?
The other day I made the decision to stop my ECT treatments and to increase by Clozapine dosage. I’m currently at 200mg and will be increasing my dose by 25mg each week until I reach 400mg. This was one of the options my psychiatrist gave me. Another option was to go back to doing ECT three times a week, but I’m not willing to do that at this point. The third option my psychiatrist gave me was to do IV Ketamine. He has been offering this as an option for many months now, but it’s not something I want to do.
IV Ketamine scares me for a couple of reasons. I used to get high off of Ketamine when I was using. That was a long time ago, and I know that abusing Ketamine and using IV Ketamine are two completely different things; the side effects of IV Ketamine are nothing like the effects of getting high off of it. My biggest fear of trying IV Ketamine is the possibility of dissociation. When I would use Ketamine to get high, I would take so much that I would slip into what’s called a ‘k-hole’, which is pretty much a dissociative state. I couldn’t move or speak, but I could still feel everything that was going on around me. The possibility of dissociating scares me, it triggers my PTSD. I always need to be able to protect myself, and dissociation would take that away from me. Plus, the treatments are especially expensive.
The use of IV Ketamine is highly effective, and it works very quickly. It is known to show improvements by the end of the infusion. Maybe my reasons for not trying it are ridiculous, but they are my reasons. I’m not saying that I’ll never try IV Ketamine; I would just prefer to leave it as an absolute last resort.
My body is just as screwed up as my brain. I had my first surgery when I was 16 years old; it was a cardiac ablation. My heart rate would randomly jump from normal up to 200 or more, and I would pass out. A year later, I had a tonsillectomy. In 2009, I had surgery on both of my knees. A year after that, I had a tubal ligation, which I will explain. I had a total hysterectomy in 2014.
The tonsillectomy is pretty much self-explanatory. I chose to have my tubes tied in 2009 when I was living in Connecticut. This was after my total breakdown. My psychiatrist had to write a letter explaining that I knew what I was doing and was making a sound decision. I decided that I have a hard enough time managing my life. I’ve had ups and downs; no matter how hard I try, I can’t always take care of myself. I’ve seen many people struggle with being a parent; it weighed on them so heavily. I didn’t want that to happen to me or my child. I decided it was better for me not to have a child. For me, this was the right decision, but it has been really hard. It’s been extremely difficult for me to not be able to have children. I often cry uncontrollably because of that fact. A year later, I ended up having to have a total hysterectomy because of severe endometriosis.
I pretend to be okay with the fact that I can’t have kids of my own. I’m a 31 year old grandma, who has never been a mother. Of course I wish I could have kids, but if I had to do it all over again, I would still make the same choice. I made the decision because it was the right thing to do for me, not because it was easy.
Right now, the most difficult problem I deal with physically is the interstitial cystitis. I currently get treatments every week; sometimes I can stretch it out to as much as every 3 weeks. The treatment involves getting catheterized so the doctor can put medicine directly into my bladder. This problem has been getting worse over time. I also have chronic bronchitis and pneumonia among other conditions, but luckily that’s not acting up as well.
I know that I’m luckier than many people, but I’m also worse off than a lot of others. Why do I have to have both physical and mental health problems? Why are all my problems chronic? Living with and managing physical pain as well as mental health is exhausting.
Just before I turned 17, I met a guy and was immediately attracted to him. Jared had a personality that was appealing to many. He made friends with people easily, but he only let them see the side of his personality that he wanted them to see. For the first couple months of our relationship, he only let me see positive traits. Once we moved in together, everything changed. He became physically and emotionally abusive. He would tell me when I could see my friends. I had to have dinner on the table when he got home, or else. We did a lot of drugs together. I fell for every trick he played and didn’t stand up for myself at all. He had me convinced that I was lucky to have him; he made me believe that no one else would want me. The worst part of it all is that he broke up with me. He said I wasn’t happy anymore. I remember telling him he would regret it. I was devastated. I don’t know why I was so hung up on a guy that treated me like crap, but I was.
At a party, I met a guy who was so sweet. Chris was the exact opposite of Jared, except for the drug use. I started smoking crack when I met Chris. Jared tried to get back together with me, but I finally stood up for myself and told him no. Jared started stalking me at that point, so I became terrified for my safety even more than I already was. Chris and I dated for several months. He kept talking about getting sober, but I wasn’t ready for that. I was completely addicted to crack that it came before everything. I was even with Chris getting high instead of being at the hospital when my dad died. That is one of the biggest regrets I have. Chris ended up getting killed only a few months after we met.
The loss of my father was exceedingly difficult, even though I knew for years that it was coming. He had been sick for many years with cancer and kidney failure. He ended up dying from an infection on October 10th, 2003. He was in the ICU for a while before his death. I miss my father and think of him every day. Losing him was like losing a part of myself. I wish I had been there to support my family, but I was too far into my addiction. I wish he could have seen me get sober.
My drug use was insane, I was almost always drunk or high on something. All of this made my mental health even worse. I was dealing with rapid cycling; I was either manic or depressed at all times. I didn’t want to spend much time with my friends, the few that I had left. All I wanted to do was die. This was probably my lowest point in life. I finally decided I wanted to quit drinking and using, but I couldn’t do it. I wished I was dead every day. I had lost so much in life, but the worst thing I lost was my self-respect.
One day, I had finally had enough. I went to my mom and told her I couldn’t take it anymore. I told her I needed to go back into the hospital. She told me that a behavioral health hospital would not fix things. I needed more than that; I needed to get sober. Apparently, she had already been looking at places to send me. She showed me some of the places she found. I was interested in this one place in Arizona; it was a year-long in-patient treatment center. It treated drug and alcohol abuse as well as mental health. I actually became excited; I finally felt a glimmer of hope. I was scared, but so enthused about the possibility of feeling better, that it actually lessened the fear. Most people don’t go to rehab willingly. I went not only willingly, but eagerly. I was also terrified; the thought of something new scared me, but the depression was so horrible that I felt my only other option was death.
Right now, I’m waiting, and I’ve been waiting for days. I’m waiting for the results to my Clozapine level blood work. The results to this test will tell my doctor whether or not he wants to increase the dosage of my Clozapine. I’m currently at 200 mg every night. I did the blood work on Friday. My normal weekly blood work was completed on Friday, but the Clozapine level takes longer to come back. I just don’t know how long; I even tried to figure out how long it would take by researching it online, but I came up empty-handed. I told my psychiatrist that I’m in a depression. I informed him that I’m sleeping too much, I’m overeating, I feel worthless and empty, and I’m easily irritable. He told me to hang in there; we are waiting for the results of the Clozapine level. Once we have the results, then we can figure out our next step.
So now I’m just waiting. I’m waiting for my blood test results, I’m waiting to find out what change my psychiatrist wants to make, and I’m waiting to start feeling better. When you’re waiting for something, every moment seems to drag on and on. I’m just trying to get through this, one moment at a time, but how much longer do I have to wait? Even if my psychiatrist decides to add a new anti-depressant, we all know that it takes 4 to 6 weeks for the medication to start working, if it’s going to work at all. So that’s more waiting. No one should have to wait this long to feel better.
I’m compliant with anything I’m told to do by my doctors. However, I am getting sick and tired of it all. I wouldn’t mind the waiting, if I knew that there were going to be positive results. I also wouldn’t mind the waiting if I knew that the positive results that I was going to get would be more than just temporary. We all know that no medication to treat bipolar disorder is permanent. Every time we try a medication, our bodies react differently; we almost never react the same way twice. How a medication works varies depending on our current mental state, the medications we’re currently taking, and any treatments we’re currently undergoing.
I just wish there was an easy answer to treating bipolar depression and mania. There should be an answer, an easy way to help us, where we don’t have to spend most of our time waiting. My bipolar disorder is very gray, nothing is absolute, and everything is questionable. I wish my bipolar disorder was more black and white, I wish it had easier, faster, and more accurate answers.
ECT went well today. I’ve done it more than 30 times; it’s become normal for me. When I woke up from anesthesia, I felt fine, no pain. By the time I got home, the pain set it, so I had to take a Percocet. I have a pounding headache and my jaw hurts terribly. I’m just waiting for the pain meds to kick in. I wish I could go to sleep, but for some reason, I can’t, I’m just not tired. If I could sleep, it would probably make me feel even a little bit better.
My memory is back to being crappy. I can’t remember where my husband is, although I know I knew his plans before the ECT treatment today. I looked in my calendar and saw that I recently went to visit my family in Connecticut, but I don’t remember any of it. I can’t remember my wedding, that one really bothers me. I went through my wedding album; it brought back some of the memories. That was helpful, but still not enough. I’ll probably watch my wedding video later today. I hate the memory loss. Every time it finally starts to improve, it’s time for another treatment that causes memory loss again. It’s a vicious cycle.
I don’t want to continue (I think I’ve mentioned that many times), but I just do what I’m told to do. One of these days, I’m going to stop being so compliant. I know that my being compliant regarding my psychiatric treatment is extremely helpful, but it’s also exhausting. I’m afraid that one day I’m just going to do what I want to do instead of what I’m told to do. Following my bipolar treatments is overwhelming. I’m going to rest today, or I’m going to clean the house and go play cards with my family. I know I should rest, but I doubt that will happen.
I have another ECT treatment today. I do them every 4 weeks; I can’t believe it’s already been that long. I hate going and doing this. It is helpful, but I guess I’m just tired of it. Maybe I would feel okay about it if doing ECTs made me able to reduce the amount of medicine I took, but it doesn’t. The people there are very nice and know me well since I’ve been doing this for more than a year. The procedure doesn’t take long, but I do feel somewhat crappy the rest of the day; mostly headaches, body aches, and memory loss.
I’m too scared to stop. What happens if I stop and it turns out that it was the one thing that was holding me together, in a way. I don’t want to go, but I always go because I’m afraid not to go and because it’s the right thing to do at this point for my treatment. Sometimes, I wish I wasn’t so compliant. Time for me to go now.
At 8:15am I had my 32nd ECT treatment (I miscounted before). I now do the treatments every 4 weeks; they’re maintenance treatments. They’re done under general anesthesia; the treatments only take a couple of minutes. I usually leave the hospital within 90 minutes of getting there. Normally, I get home and go to sleep for a little while. When I first started the treatments, I could go back to sleep for a couple of hours, but the amount of time I’m able to rest afterwards has been decreasing with every treatment. Today, I got home from my treatment and was unable to go back to sleep at all for the first time.
I’m not a fan of the recovery and after effects. My jaw hurts so bad that it hurts to chew anything and my entire body is muscle sore. It feels as if I just ran a marathon, or two days after a massive workout, when you have to brace yourself for every movement you make. My memory gets even worse than normal after the treatments; the memory issues last longer than the physical ones. The memory issues make me feel like an idiot. I’m constantly asking questions, and I usually ask the same questions over and over again.
I’ve been doing these treatments for so long now, I wonder if I will ever be able to stop them. My psychiatrist wants me to be stable for 6 months before stopping, and I just don’t see that happening. I could just tell him I want to try stopping the treatments, but then what happens if I end up in a huge depressive or manic episode? Then I would have to go back to doing the treatments 3 times a week. I don’t want to do that, and I’m not sure if my body can even handle that. I wonder what the long-term effects are of ECT; maybe that’s something I should look into.
My Side of the Pole 