Further Frustration with My Pharmacy

I’m beyond frustrated at this point. I’m so annoyed and pissed off. I’m still having problems refilling my Clozapine. Yesterday, I had to call the pharmacy 6 times. I finally found out that the problem with my prescription is because of the national database. I don’t know what problem the national Clozapine database has found. My blood work is better than it used to be, it’s finally back to normal. My doctor waited a few extra days to write my prescription because he was waiting for my Clozapine level blood test to come back. That test took a few extra days. I usually get my script on Sundays or Mondays, and this time he didn’t write my script until Thursday. Maybe that’s the problem.

I have an appointment to go do my weekly blood work today. Part of me is wondering if I should even get it done since my script from last week hasn’t been filled. I’m out of Clozapine. If I can’t get my script to be filled today, then I have no Clozapine to take. I wonder if there will be bad side effects or withdrawals. I’ve forgotten to take the medication by accident once or twice. When that happens, I usually end up feeling sick to my stomach, more like a stomach pain. I have no clue what to do. I keep calling the pharmacy, but I’m getting nowhere.

Clozapine Refill Frustrations

I started my Clozapine rechallenge on April 3rd; I have now been taking it for close to 8 weeks. My doses have increased slowing over that time. I’ve had some side effects, but nothing that can’t be managed or dealt with. Some of the side effects have gone away over time and others I’ve learned to deal with to the best of my ability.

I just had my Clozapine level taken and the results finally came back yesterday. My level came back at 80, which is very low. I’m assuming that my doctor is going to be increasing my dose, but I’m not sure. I don’t really know where he wants my Clozapine level. A low level is between 50 to 150 ng/mL, 200 to 300 ng/mL is a medium level, and 350 to 450 ng/mL is a high level. I’m pretty sure that the therapeutic level begins 100, which I haven’t reached yet.

Every week I seem to have problems with my blood work and filling my prescription. People at the pharmacy tend to lose track of my blood test results, which they need in order to fill my prescription. I have finally learned that if and when the pharmacy says they haven’t received my weekly blood work, I just need to tell them to look in my file. I thought getting my script filled would be easier now that I’ve figured out that part. However, this week’s prescription has been difficult for another reason. First, my doctor wanted to wait for the Clozapine level results so he knew how much to prescribe. I normally get my script filled on a Sunday or Monday. It’s now Thursday, so I can’t last much longer without a refill. My doctor has called the prescription in twice to the pharmacy. He said that he was on hold for 10 minutes just to leave a message. I’ve called the pharmacy 3 times today regarding this script, and it still isn’t filled.

I don’t know why it’s so difficult to get this prescription. It seems to add a great deal of anxiety to my life every week. I’m actually taking Valium just to deal with this situation. I wonder if it does more good than harm.

Vivid Dreams

Insomnia and other sleeping disorders are common among patients with bipolar disorder. I personally have suffered from insomnia. I have taken Ambien, Lunesta, Seroquel, Trazodone, and other medications over the years to get me to sleep. Right now, the Clozapine I take gets me to sleep and keeps me asleep. It is also common for individuals with bipolar disorder to have very vivid dreams, especially nightmares.

Patients diagnosed with bipolar disorder often have strange and scary dreams. Many of these patients have anxiety in their dreams. Their type of dreams may also change depending on their status, whether they are manic or depressed. My husband tells me that I am very active at night. I tend to talk a lot in my sleep and I also move around a lot. I’m not sure, but I think that this is related to the type of dream I am having.

Nightmares tend to occur more often for those diagnosed with bipolar disorder. Personally, I tend to have very vivid and scary dreams, but if I don’t talk or write about them right away, I will easily forget the dreams. For the past couple of weeks, my dreams have been extremely vivid. Everything seems so real. The dreams I’m having are mostly everyday situations. I’ve actually had a few times when I’ve confused my dreams with real life. The dreams are common occurrences such as disagreements with my husband or family members, difficulties with doctor appointments for my physical health, or problems with pets.

One of the things that suck is that I have been feeling physical pain in my dreams, specifically bladder pain like I feel from my bladder disorder. I wish I could get rid of these dreams. Isn’t it enough that I have to deal with this crap during the day? Why do I have to deal with it again in my dreams? I had a conversation with my husband in one of my dreams. I ended up using that conversation from my dreams in a real life situation. My husband had no clue what I was talking about. It took me a while to realize that what I was talking about actually came from a dream.

I think I should start keeping track of my dreams. Maybe I’ll keep a journal next to my bed. This way I can write down what my dream was about as soon as I wake up. If I wait too long, then I completely forget what it was about. I’m interested to find out how my dreams change based on what episode I’m in.

Waiting Is The Hardest Thing To Do

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.

It’s All Too Much

I’ve completed a few things so far today that needed to get done. I went and got my weekly blood work, this week it included a Clozapine level. I also emailed my psychiatrist to let him know how I’m doing. I let him know that I think my weakness and exhaustion is from ECT, not from Clozapine. For every step I take, it feels like I’m taking a thousand steps. Every single task I work on, even when I don’t complete them, requires a major effort. And it seems to be never-ending. Once I finish one task, there are three new ones to finish. It keeps increasing. Can’t people tell I’m not up for this right now? I know that I normally fake being okay, but I’m not even trying to fake anything right now. To fake being okay requires energy, and that is not something that I have at this time. All I can do is be myself; tired, confused, and distraught.

My husband has decided to look for a new car. Actually, my mother-in-law wants to get my husband a new car and give his current car to his brother. His immediate family is pretty much computer illiterate. His brother once told me it was amazing how I was going back and forth between two windows. So any time they want to do something, they always ask me. “Why don’t you ask Jodi? She could easily do that for you.” My only problem with that is I struggle to say no to anyone. I especially struggle to say no when I’m asked in front of a group of people. This time, it felt as if it was assumed that I would do whatever I was told to do or whatever was “asked” of me. It’s hard enough to get something done when you have one person telling you what they want, but when the decision is between two different people who aren’t in the same room, it becomes a major challenge. It is not something I want to get myself in the middle of.

Maybe I would feel a little better if I could get a few more things done that need to be done for me. Tasks such as cleaning the house would help me feel good. I even break that task down into smaller tasks so I feel productive as I’m cleaning. I already cleaned the kitchen and the bathrooms a couple of days ago. All that’s left is to dust, vacuum, and mop. I wish I could get rid of my depression. It’s making life so difficult; every little task is a massive job. I just don’t want to do it anymore.

Clozapine Side Effects

Today marks 6 weeks that I have been on Clozapine. My psychiatrist has been increasing the dose slowly. I have only been at my current dose of 200 mg a night for 2 weeks. This is the dose that my psychiatrist wants me on until we get the results of my Clozapine level from this upcoming blood work. Things were going just fine, until the past several days. There’s always some sort of problem with me and medications, it can never simply work.

One thing I noticed is that I’m starting to slur my words and sometimes I just have a hard time saying certain words, usually words that have several ‘s’ sounds strung together in a row. It doesn’t happen often, but when it does, it’s very frustrating. I feel like a little kid again with the speech impediment I had until I reached 3rd grade. I first noticed it happening about 3 or 4 days after increasing my dose to 200 mg. My initial thought was that it could be due to the Valium or Percocet. I paid close attention making sure that the slurred speech was still occurring even when I had not taken any Valium or Percocet.

Over the past few days, I noticed another side effect, drooling. It only happens when I’m sleeping, but it gets so bad that my pillow is soaked. Sorry, I know it’s gross, but it’s been happening for about 4 days now. I tend to wake up in the middle of the night and then I have nowhere to lay my head down when I try to go back to sleep. I did some research, and it turns out that drooling is a regular side effect of Clozapine. The slurred speech is also a known side effect, but it’s not very common. I wish I could fix the fact that I tend to get so many side effects from medications. I wonder if it’s because of my Ashkenazi genes.

I told my psychiatrist about these side effects. He said that we can discuss options regarding the drooling the next time I see him, which is on Wednesday. That sounds promising, at least there are options. However, he said that if the slurred speech continues or increases, then I would most likely have to reduce or get off the Clozapine. I’m not happy with that option. There’s nothing I can do about it now. If I do end up having to get off the Clozapine, then I’m sure there is a very good reason for it. Now, I just wait and see…

Zone Meal Plan

In the past 6 months, I have gained 32.5 pounds. Bipolar weight gain is terrible and extremely difficult to control. The weight gain began when I was in the midst of yet another depression, before I started taking Clozapine. Then, during the first couple weeks on Clozapine, I noticed that my hunger was never-ending and as a result, my weight was increasing even more. It was one thing when it was just 10 pounds, but now it’s more than 30. I have been through many depressive episodes, and I’ve gained weight during each of them. The largest amount of weight I gained during a depressive period was 80 pounds; that was when I was taking Risperdal. I will never take that medication again. During most of my other depressive episodes, I gained somewhere between 40 and 60 pounds. I always manage to lose the weight and get back in shape; I even keep the weight off, as long as I’m not in a major depression.

I decided, while I was on vacation, that I would start a new food plan when I returned. My husband said he wants to lose weight as well. It always helps to have another person in the house eating healthy and exercising. I have decided to go back on a zone (block) food plan from CrossFit, which I was given several years ago from my personal trainer at the time. It requires a lot of measuring and weighing. Breakfast, lunch, and dinner are all 3 block meals, and both of my snacks are 2 blocks each. After a couple of weeks, I will lower my snacks to 1 block each. I just want to give myself time to get used to eating on a schedule again. I think that starting with 2 block snacks will give me a bigger chance for success. If anyone is curious about the CrossFit Meal Plan, just follow this link, Crossfit Meal Plan PDF. The document explains what a zone meal plan is, what blocks are, it has a block chart showing what foods are worth, and example meal plans.

The meals are plenty for me to eat and they taste good; I’m not hungry. I still want to eat, but that’s just because I always want to eat. I eat compulsively; I overeat pretty much all the time. I wonder how long I’ll be able to follow the plan without overeating. Once I eat off my meal plan, the rest of the day is doomed. My mind doesn’t work right in so many ways, and food is one of those ways. I’m particularly proud of myself for choosing to start this meal plan. I really hope I stick with it and follow through. It’s a sign that my depression could be improving. I still feel depressed and have suicidal ideations, but even the smallest improvement can make a huge difference. My husband suggested that we work out together; he used to be my workout partner years ago, and we had a lot of fun. It sounds like a great idea; I just have to figure out how to manage my anxiety. Plus, I should probably only do one thing at a time; maybe I should wait until I’ve been on the new food plan for a couple of weeks before adding in a workout at the gym.

Challenges Show Us What We’re Made Of

I’ve heard it said many times before, ‘Challenges aren’t there to stop us; they’re there to show us what we’re made of.’ If that’s true, then I’m made of medications. It’s my daily medications and my as needed meds (such as Valium) that allow me to face my challenges. Okay, maybe I’m being a little dramatic, but I honestly don’t think I would be able to do anything without my meds. I can do a lot without Valium; it’s just there in case I need it. While on vacation, I have needed it more, but there have been times this past week when I did things without taking any. I’m going out with my mom and grandma this afternoon for mother’s day and I’m going to do it without taking any Valium, or at least that’s the plan. I can do it, I can do it. I tell myself over and over and eventually it helps. Everyone faces challenges on a daily basis, big and small. Even if I have to take daily medications and some other medications as needed to get through these challenges, at least I’m getting through them. At least I give it a try.

One challenge I’m dealing with right now is getting my weekly blood test results over to the pharmacy so I can get my prescription for Clozapine. I had my blood drawn at the local hospital and then I was told that they could not send my results to the pharmacy even though my psychiatrist requested it on the lab order, he gave them the pharmacy fax number and everything. All labs are closed on Sundays where I am, even the one in the hospital. So tomorrow morning, I have to call the hospital lab and Quest labs and explain the entire situation to them. Hopefully they will have my results and will fax it over to my pharmacy. If not, then I’m going to have to go to the hospital to talk to someone in person. The hospital is 40 minutes away. If that doesn’t work, then I don’t know what I’m going to do, but I will find a way to keep trying. There has to be a solution.

This is a huge challenge for me. I’m extremely uncomfortable talking to people. My anxiety increases, I start rocking back and forth, I lose my words, my heart rate increases, and I start shaking. Maybe no one else notices it, but I feel exposed. I feel as if everyone in the world can see that I can’t even ask people questions. I’m getting a little better at it, but it’s still terrifying to me. Sometimes, I write down my questions in case I lose my focus due to the anxiety. That way, no matter what, I can get my questions answered. I need to at least try to do it. The times that I try and it works out, I feel so proud of myself. It’s a huge accomplishment. I do my best not to let my challenges stop me; I try to find my way around them, one thing at a time.

My Lab Results Finally Improved

For the past several weeks, my blood work results have been getting worse. My white blood cell (WBC) count, eosinophils, and absolute eosinophil have all been high and increasing every week. My WBC should be somewhere between 4 and 11 k/mm3, instead, it got as high as 13.6 k/mm3. My eosinophils should be between 0 and 7%, but it maxed out at 26%. My absolute eosinophil should be in the range of 0 and 0.7 k/uL, but my got to be as high as 2.9 k/uL.

I don’t really know what these levels mean, except that it makes it very difficult for me to get my Clozapine prescription filled every week. My psychiatrist and my pharmacist get copies of my blood work results every week, and every week my pharmacist questions whether or not to fill my prescription. It becomes a huge deal and I usually have to have my psychiatrist call my pharmacy to tell them it is okay to fill my prescription. It’s never an easy task, and starting next month, it’s about to get even more difficult. My pharmacist told me there are new protocols being put in place starting in May. If blood work results are off, like they have been every week, then they have to be sent to the central Clozapine database. The database will decide if the prescription can be filled instead of the pharmacists and doctors making the decision.

Luckily, I think all of these problems might be coming to an end for me, hopefully. For the first time in a month, my levels are finally going back to normal. It might take a little while to completely return to normal, but at least it’s headed in the right direction. My WBC is within normal limits at 9.7 k/mm3. My eosinophils are down to 17% and my absolute eosinophil is down to 1.7 k/uL. Those are all huge improvements for me; I’m hoping my pharmacist will see this and fill my prescription without question.

I have been living week to week for the past month, never knowing if I’m going to be able to stay on this medication. Every week, I wait for blood work results and then wait to find out if my prescription can be filled. My bipolar disorder already causes me not to have control over my own life. The Clozapine blood work, test results, and weekly prescription fills have allowed me to have even less control than I normally have. I’m hoping that since my blood work results are finally improving, I won’t have to keep worrying about whether or not I can get my prescription every week. I am concerned about what will happen when he increases my dosage again, but I can only worry about some many things at one time. I don’t want to add this to my long list of worries, especially since it is also something I have no control over.

Feeling Shameful – Admitting My Mistake

I forgot to take some of my medication last night. Of course it was the most important of all meds, my Clozapine. Right now, I’m feeling very shameful. The one thing I have going for myself is that I’m always compliant. I always take my medications, I always do whatever I’m told to do by my doctors (no matter how much I really don’t want to), and I always follow through on these things. I can’t believe that I forgot to take those pills.

I got home last night from the trip, unpacked, and was so tired I just fell asleep. I should have realized when I woke up two hours later, that I hadn’t taken my Clozapine. I was in and out for the rest of the night on the couch. Why didn’t I take that hint of not being able to sleep through the whole night? I didn’t realize until I was making the bed this morning. At that time, I saw my meds sitting on my nightstand. My first plan was to pretend it didn’t happen and not tell my psychiatrist. Then, I thought that I wouldn’t be able to live with myself if I wasn’t completely honest. So I sent an email to my psychiatrist and told him exactly what happened. I was extremely worried about what he would say, but his response told me not to worry and that I could still go and get my blood work done today.

I felt a little bit better knowing that my psychiatrist isn’t upset, but I’m still upset with myself. I expect myself to always be compliant. However, I was just told that by telling my psychiatrist exactly what happened, I was still being compliant. Complete honesty is what’s necessary for compliance, and that’s what I have done. I suppose I should give myself a break. Everybody makes mistakes; I need to allow myself to make mistakes as well. I need to stop shaming myself, and begin to be proud of myself for my honesty. As always, it’s easier said than done. I guess it’s just another thing to work on.

My Side of the Pole

Bipolar – Mental Health

Tag: Clozaril