Today, I had my biography and my first blog posted on the International Bipolar Foundation (IBPF). My first blog talks about the importance of honesty between patients and psychiatrists. It explains how I have learned over time what a big role honesty and respect play in the relationships between patient and doctor.
You can find my first post on the IBPF website here.
You can find my biography on the IBPF website here.
I take a lot of medication, and I really mean a lot. I take medication for both my mental health and my physical health. I already take Lithium, Tegretol XR, Deplin, Clozapine, Mirapex, Cytomel, Valium, and Inositol all for my mental health. I also take Zofran, Percocet, Depo-Estradiol, and Depo-Testosterone for my physical health. This doesn’t even include my multiple inhalers and breathing treatments. I’m hoping that I can decrease the meds over time. The first medication I want to go off of is the Deplin. It’s really expensive and I don’t think it’s been doing me any good. I have to wait until I’ve been off of ECT for a while before making any changes to my mental health medications.
A doctor told me this past week that a certain medication may help my bladder condition, but it would be a lifelong medication. I laughed, sarcastically, and told her that wouldn’t be a problem for me. I’m already on a lot of other meds that are lifelong ventures, adding one more to that list is no big deal. Plus, it would be awesome if I could eventually stop getting bladder installations done every week. The new medication is called Elmiron, and the problem is that it’s very expensive. The cheapest I found it was $224 a month. Luckily, my aunt found a patient assistance program that I’m qualified for. I have already filled out my portion of the paper work. I will have my doctor fill out the rest of the documents (which isn’t much) and then I can send it in. I’m excited to find out how much this program will help me.
I often wonder how much is too much. It’s hard to get off medications once you start them because everything has to be done slowly in order to know what medication is causing or helping each issue. Most of my medications are for my mental health, but there are still many that I take because of my physical health. Also, a couple of my meds from both physical and mental health are taken only as needed, so I don’t take them every day. For example, I only take the Zofran when I’m nauseous, the Percocet for pain, and Valium for anxiety attacks. I try to take these meds as little as possible; I don’t want to become dependent on them. I’m sure that I’ll always be on medication, but maybe one day I won’t have to take as much as I do right now. I wonder how many other people take as much medication as I do.
For me, there are different degrees of severity to my depression. I can only speak for myself, I don’t know if other people experience these levels of depression as well. My depression is getting better, hopefully because of the Clozapine. If that’s true, then the dosage increase should help even more. When I’m really deep into a depression, dealing with the worst of it all, I can barely get myself to get up out of bed or off the couch. I struggle with personal hygiene, I gain weight, I don’t care about things that are normally important to me, and it’s even difficult to feed my dog. Sometimes I cry uncontrollably, other times I’m just crying on the inside. I distance myself from my friends; I stop calling and visiting them. I also stop reaching out to everyone. There are times that I’m not able to express my emotions. For example, I will see a funny movie, I will think it is funny, but I’m unable to laugh. That is really hard to deal with. When my depression is at its worst, I can’t push myself through it no matter how hard I try. I’ve also been struggling with suicidal ideations for many months. It’s always there in the back of my mind.
Right now, it feels as if my depression has begun to improve. I still struggle with personal hygiene, weight gain, expressing my emotions at times, and reaching out to some people. However, I do recognize my improvements. I have been able to reach out to certain friends and even take the time to visit them. Taking care of my dog is no longer an issue. There are times when I still struggle to express emotions, but the fact that I am able to laugh at times is great. The fact that I am able to push myself to do things is a huge improvement. Even though certain things are hard, I have the ability to push myself to do them. It’s better than it was a little while ago when I couldn’t do anything no matter how hard I tried. It’s a big deal that I can notice these improvements. The suicidal ideations are still in the back of my mind, but the thoughts are there a lot less. Those feelings are no longer my first ideas.
I finally have some hope. I do think it’s possible that I can be genuinely happy again one day; I’m just waiting for that day to come. I must have some patience, maybe a lot of patience, but it will happen. I believe that I will have lots of ups and downs throughout my life. This depression is not the end of everything for me.
I’m sitting on the couch, rocking back and forth. My arms and legs are curling me into a ball. Parts of me shake as I rock back and forth; it’s usually my right leg that shakes uncontrollably. Normally, I know the reasons for my anxiety attacks. In fact, I think that this is the first time that I don’t know what’s happening.
The only thing I can think of is that my husband and I both have appointments at Discount Tire tomorrow morning. I need two new tires and he needs a new one because he got a flat last night. New things normally cause me to have anxiety, but this shouldn’t be a problem because my husband will be with me. He always makes me feel safe.
I have a lot to do around the house. Maybe cleaning will keep my mind occupied and reduce my anxiety. Plus, my house could use some cleaning. I think it’s been over a week since I did a good cleaning. If cleaning doesn’t work, then maybe I’ll take a Valium, but I only like to take those when absolutely necessary. I could also try meditation once I’m able to stop rocking and shaking.
UPDATE: I started cleaning my house and my anxiety got better. I like seeing a clean house, it makes me feel relaxed. It’s nice to know that there are people in all parts of my life that are willing to help me though anything. Thanks for the suggestions and support.
I have so many different struggles that it makes me wonder which difficulties have been there all along, and which ones are side effects of medication or ECT. Something has to change. Whatever it is, I really need to see some improvement. Hopefully I don’t have to wait too long. The three biggest struggles that come to my mind are memory loss, trouble finding the right words when talking (aphasia), and trouble making decisions. I mentioned these issues to my psychiatrist the other day. He told me that the aphasia is most likely caused by the Lithium. High levels of Lithium can cause aphasia in some individuals. Even though my Lithium level is low, it can still cause aphasia. I chose not to make any changes to my Lithium because we are already making a couple big changes such as increasing my Clozapine dose and stopping ECT treatments. It’s not a good idea to make too many changes at once. If something does happen (positive or negative), I wouldn’t know which medication change caused the new effect.
The memory loss is definitely from ECT. Since I have decided to stop doing ECT treatments, I’m wondering if my memory will get better and how long it will take for it to improve. Part of me is curious if my memory will get back to what it used to be; I’ve done 33 treatments and I’m not sure if there are any long-term side effects. Some of my medications, such as Lithium and Tegretol, can also cause memory loss. There is a possibility that some of my memory issues are from the medications, which means it’s possible that my memory won’t return to what it used to be. I guess I just have to wait and see about this issue. I hate waiting.
Problems making decisions is another issue I’m dealing with at this time. This is known to be a difficulty with depression. The only problem is that I still have the same issue when I’m manic or even hypomanic. The problem isn’t going away. I have difficulty making small and large decisions. Sometimes I can’t even figure out what to eat when I’m in my own house. My husband will ask if I want to go do something, like go bowling. I don’t know what I want to do, so I just tell him that I’ll do whatever he wants to do. I think that’s frustrating for him, at least I imagine it would be frustrating. Sometimes, he will ask me if I want something. For example, he will ask if I want ice cream. I respond to him by saying that I don’t need any. Then he tells me that he didn’t ask if I needed any, he asked if I want any. I don’t know how to answer that because I don’t know what I want. I wish this was less difficult to deal with, maybe one day it will get easier.
I have so many things I need to get done today, but I’m having a hard time doing them. I’m not being lazy; I’m just overwhelmed with things to do. I have already gotten my blood work done, went to the gym to workout, went bowling with my husband, played cards with my mother-in-law, and did a bit of blogging (not in that order). However, there’s so much more to do. I still need to shower, cancel my upcoming ECT appointment, meditate, clean/organize the house a bit, and contact a couple of friends. I just don’t know where to start; probably with the shower.
A couple of months ago I applied to be a blogger for the International Bipolar Foundation. Yesterday, I received a response from them. They said I can choose to be either a guest blogger or monthly blogger. I’m so excited. I need to get started on this as well. I feel honored that the IBPF organization wants me to write for them. Getting started on this is more important to me than cleaning and organizing my house. I think I will shower and then meditate. Hopefully, that will relax me enough to keep writing today.
I was very nervous about my psych appointment yesterday; I was so nervous that I even had an anxiety attack. I’m not used to telling anyone what I want, especially when it’s different from others want. Standing up for my own desires is nerve-wracking for me. I prepared for my psych appointment yesterday by writing down exactly what I wanted to say. I told my psychiatrist that I wanted to stop ECT because it has become too hard on my body and my mind. I’ve been doing ECT for close to a year and a half, and I just can’t take it anymore. I explained my reasons and to my surprise, he was okay with my choice. He explained that he respects my choice; I couldn’t ask for more than that. I’m very happy with the outcome of that appointment.
He gave me several options about what we could do moving forward. He told me I probably wouldn’t like a couple of the options, but he was going to mention them anyway. I’m glad he did mention them (without any pressure). It was nice to see all of my options at once, even though I didn’t like most of them. Together, we decided to slowly increase my Clozapine up to 400mg a night. We will increase the dose by 25mg each week until we reach our target goal of 400mg. We are increasing slowly to hopefully avoid some negative side effects such as dizziness, fevers, and drowsiness. It will take two months to reach our goal. I will see him in three months. This gives me time to get to the target dose and then allow my body to adjust to the dose for a while. I’m really hoping that this change will help. The Clozapine has helped quite a bit so far, I have a feeling that it will continue to help.
My husband pointed out to me that this is the first time that I made my own decision regarding my mental health, and stuck by it. He was proud of me. To be honest, I’m proud of myself. I know it sounds a little ridiculous to be so happy about this decision, but it’s a huge step for me.
I always do everything I’m told, and I think it’s catching up with me. I don’t want to cause any problems, but I feel like I need a vacation from my life, from myself, from my health. Just out of curiosity, I’m wondering how many people have had the same thoughts as the following:
These are just a few of the things that have been going on in my mind lately. I think I’m just a bit frustrated with everything, and I’m wondering if other people have similar thoughts as I do. If others do have these thinking issues, what do you do to get through them?
I wish I knew how to control my thinking. Everything can be going just fine, and then one thing happens, like someone gives me an attitude, and I automatically start going through all of the possible reasons they could be mad at me. How self-centered am I to think that just because someone has an attitude it has something to do with me? There could be a thousand different reasons for that individual to have an attitude. I really need to get over myself. I always think that I’m doing something or everything wrong. I even tend to do the same thing when someone is giving me a compliment. I think that instead of actually giving me a compliment, that person is pointing out that I finally figured something out.
Yesterday, when I was with my granddaughter, I heard a couple of people say, ‘Wow, you’re getting really good with her.’ Instead of hearing a compliment, I hear them saying how bad I used to be with her. Then I start getting frustrated; it’s not like I had children of my own, this is my first time dealing with an infant. I really down that people are giving backhanded compliments. People are probably saying how they really think and feel, and I’m just overanalyzing everything. I’m actually mentally exhausted from always over-thinking everything for no real reason.
Trying to cut myself some slack is a lot easier said than done. I really do think that almost everything I say or do is wrong in one way or another. No matter how hard I try, it’s impossible to please everyone. Maybe I should just work at doing things that will make me and my husband happy. The only problem with that is that I don’t even know where to start.
Late tomorrow afternoon, I have an appointment with my psychiatrist. I’m really nervous about this appointment. He is going to go over my Clozapine blood level with me and change my dose. I’ not really worried about that, but I have just decided that I don’t want to do ECT anymore. I’ve been thinking about this for a while now, but I finally made my decision (I think). Right now I’m going every four weeks. So at the very least, I could just start by taking an extra month off and seeing how that goes. If it’s a disaster, then I can think about going back on it.
I wrote down on paper what I want to say to him because I don’t normally stand up for my opinions.I don’t like any type of disagreements. Since I wrote it down, then I know I will be able to say exactly what I want to say. I’m going to tell him, ‘I am no longer willing to do ETC treatments. The stress on my body, the memory loss, and the loss of words in conversations is too much for me. It has been this way for a while. I tried putting it off, but I can’t wait any longer. I’m not willing to do the Ketamine treatments at this time.’ Hopefully I can stick by what I say. There’s a better chance of that happening since I wrote down what to say.’ I’ll let you all know how it goes.
My Side of the Pole 