Weekly Blood Work – Same Phlebotomist

I have been nervous for days now about the blood work I had to get done today. Most of my nerves were because of the inappropriate phlebotomist from last week that kept asking me personal questions and telling me what I should do for my bipolar disorder. I have been practicing all week just what to say to her if she was the one drawing my blood again. I was prepared; at least I kept telling myself I was prepared. I was ready to tell her, “I don’t want to talk” if she asked me a question, or to ask for someone else completely. To be honest, I wasn’t prepared. I took a Valium to calm myself out of my anxiety attack and I went to the lab.

I arrived at the lab and stood in line to check in. I made a 2pm appointment, but they were running late. At least my Valium was kicking in, I was able to breathe, my chest pains stopped, I started shaking less, and my mind began to slow. I looked behind the counter and only saw one receptionist and one phlebotomist. Then my heart started to beat a little faster again, it was the same woman from last time. As I walk past her, she asks me “Did you think about what we talked about last time?” I can’t believe that she was that invasive two weeks in a row, better yet, she broke HIPPA laws two weeks in a row. I was surprised, but my response comment came to me quickly. I told her, “Yes, and I’m happy with the way I’m doing things.” I couldn’t believe it, but she actually backed off. The only other things she said was just normal chit-chat, to make time go by quicker. What I said was nothing like what I planned on saying, but it still seemed to work, and that’s all that really matters.

If she says something to me again next week, I will report her. It’s really hard for me to report her or tell her boss about the situation; I’m not sure why it’s so difficult, it just is. My husband keeps telling me I should report her. He’s probably right; I should probably do it for the people she treats after me. Even just the thought of reporting her, or having my husband report her, makes me start to have a panic attack. I don’t know if I could do it; I don’t know if I want to do it.

An update regarding the Clozapine: My fatigue has been decreasing every day and I have no other side effects that I’m noticing. I informed my psychiatrist these facts and that I completed my weekly blood work today. He told me I could up my Clozapine dose to 125 mg. I was so excited when I heard, I was worried he was going to stop the medication because of my blood work results, but he is still allowing me to move forward on my dosages.

Preparing To Travel

Traveling is something that can be fun to do, depending on several factors such as how you get there, who you’re with, and your destination. I have two different getaways coming up, and I know that it’s time to start getting ready for at least the first one. I want to be prepared for them, and the only way to do that is to actually do the work, both physically and mentally. Traveling when you’re bipolar takes more than just packing. The more prepared I am for the actual traveling, time management, and visitations with others, the more I will enjoy my trip.

My first getaway is this Wednesday and it’s just one night away with my husband. A friend of his is getting married and we decided to go away the day before so we don’t have a lot of driving to do all in one day. Plus we get a night away from our normal lives, which every couple needs to do now and then. I should be looking up activities to do while we are away other than just go to the friend’s wedding. Instead, I’m just anxious about going somewhere I haven’t been before and going to a wedding where I’ll be surrounded my other people. I know that I’ll be with my husband, who makes me feel safe, so I’m sure everything will go okay. I just need to stop playing it all over and over in my head, that’s doing me no good. As I was writing this, I realized I need to start planning some things to do while I’m away with my husband, we like to stay active. With one simple Google search I found a Dolly Steamboat tour and an entire Ghost Town to explore! It was so simple, and it looks as though we will have a lot of fun together. We can start making plans soon when he gets home from work. I’m actually looking forward to it.

My next trip to plan for will take a lot more planning. I’m going across the country to visit my mom and the rest of my family. I will actually be with my mom on Mother’s Day, I can’t wait! The most difficult part of the trip is the flying. I love to fly, my dad was a pilot, but it’s the airports that get to me. People don’t respect each other’s space and everything is crowded from the security lines to the bathrooms. People act as if you’re going to win a million dollars by boarding the plane as quickly as possible; it’s the same problem when it comes to deboarding the plane. I don’t like to be rushed, so I get there early, but that just means I have to deal with the crowds longer. All I really want to do is find a quite place to myself, anywhere I can sit down and plug my laptop in while I wait for my plane. I look for the same thing during my layover. It’s not usually a successful venture, but it’s still worth a try. To keep myself calm I take my Valium and I remind myself all the time that I’m on my way to see my family. Nothing is better than being able to see my family.

I’m going to visit with my mom, nieces, nephew, aunt, grandmother, family friends, and even some old friends I’ve been out of touch with. I’m lucky that my family is extremely accepting of my bipolar disorder and my anxiety. It can be difficult to fit in everything I want to do during the short amount of time I’m there, especially when you’re trying to adjust to a different time zone. This time, I’ll be there for eight days. I’ll get as much done as I can, but I can’t overextend myself, traveling is hard enough already. It is hard living away from my family, I need to take advantage of the time that I do have with them while I’m there. This visit in particular, I’m looking forward to one-on-one time with certain people such as my mom, aunt, and grandmother. I mostly just hang out with my family, but there are a few things I want to do while I’m there. I want to complete my Wellness Recovery Action Plan (WRAP) with help from my mom, I still have to do blood work and get medication, I have a birthday gift for my niece, and there’s a 3D Leonardo Di Vinci exhibit I can’t wait to see. This is all I can think of at the moment. If I want to get all of that done, then I better start planning.

Rapid Cycling

Rapid cycling is described as a pattern in an individual’s bipolar disorder. The individual must experience at least four or more episodes in one year. These episodes can be either manic or depression, I’m not sure if mixed episodes count. My specific diagnosis is Bipolar 1, rapid cycling, with psychosis. Maybe, my previous post where I was wondering if I was crashing is just another part of my rapid cycling. That could be why it feels like my episodes come in waves; they happen so often I have a hard time keeping track of them all.

People who are rapid cyclers can still crash; I guess the crash just doesn’t last as long. However, rapid cycling is a diagnosis that is not necessarily permanent. It can change as time goes on. A person’s bipolar symptoms tend to change with time, generally based on their experiences and treatment. This makes it possible for the rapid cycling diagnosis to be temporary for most individuals, although the diagnosis can come and go.

I find rapid cycling difficult to manage. Just when it seems as if I’m getting a handle on current emotional status and its symptoms, my episode changes to something else. Lately, it’s changing slowing, which is nice, but it’s hard to keep up with. One day, I can be cleaning, getting stuff done, and reaching out to others, and then the next day I can’t get off the couch. It usually takes me a couple of days to mentally realize and accept my current state, and that is extremely difficult when things are always changing.

I have a couple of questions. Is it even possible to cycle daily or weekly? What I find tells me that rapid cyclers usually cycle at least four times a year. Are there any other individuals diagnosed with rapid cycling bipolar? Do mixed episodes count towards rapid cycling? It would be great if anyone wanted to tell me about their experiences; I would appreciate hearing from you and finding out how often you cycle and how you handle your cycles.

What’s Coming? I Hope It’s Not A Crash

I wouldn’t necessarily say that I’ve been manic lately; I’ve been in a mixed episode more or less. Everything changes day by day; whether or not I’m able to get things done, how much energy I have, my emotional state, how much I reach out to others, if I can complete my goals, and how impulsive I am. These are my major signs that show what state I’m in; manic, depressive, or mixed. Since I had an ECT treatment yesterday, I generally slow down for at least a few days as my body recovers.

When I’m manic or mixed, I tend to get a lot of household responsibilities done. I can go all day without stopping. I make sure that I can complete every goal I set out for myself. I can’t stand not being able to cross off every item on my to-do list. I also usually reach out to others, both friends and family, when I’m manic or mixed. I withdraw as the depression sets in. I usually don’t have elated feelings to begin with during mania or mixed episodes; I still tend to feel bad about myself, unable to see the good things that I have done.

Every day, I see certain symptoms changing. For example, today I’m having a hard time getting things done. It is the day right after ECT, so I’m trying to give myself a break, but reaching out to others is also very hard. I’m also feeling the emotional depressive symptoms, wishing I wasn’t around is a common feeling for me. I’m not sure if there’s a crash coming, or if I’m just reacting to life’s circumstances. The worst part, in my opinion, is I keep gaining weight. It’s been happening for a few months now. I’m up 30 pounds, and I don’t have the will power to fight it. I have been wondering what’s coming for a little while now. Sometimes I think my episodes happen in waves; often never-ending and they don’t often last long enough to realize what’s happening, which is an improvement from before, now that I think about it.

If this is a crash coming, then it’s probably the easiest one I’ve gone through. Or maybe the new medication, Clozapine, is helping ease the fall a little bit. Other times, I have spent all my money, gained 80 pounds, or withdrawn completely from my loved ones. I’m still productive, no matter how difficult it is, and I’m working at keeping my relationships healthy, which is extremely difficult for me. I’m still trying, that’s what matters. Maybe I should just be grateful that I am still able to work at it. When my depression hits, it doesn’t matter how hard I try, I still don’t get things done like I want to.

Venting: Letting Out My Day

Normally, I just push through my days, no matter how bad they are; I find some way to make the time pass. I can usually hold it together; I can put a fake smile on and say what I need to in order to make others think I’m fine. Today, however; was not one of those days. My psychiatrist is worried and wanted me to be checked for Clozapine-induced myocarditis. I went to the doctor, and it was a waste of time. I checked her notes afterwards, and she only listened to about half of what I said. I also couldn’t get the ultrasound they referred me for; I wonder when I’ll actually have that appointment. My psychiatrist isn’t taking me off the Clozapine yet, but I’m just guessing that based on my luck, there’s going to be some reason to take me off it.

I’m overwhelmed by life. I don’t know how much more of this I can take, or how much I want to take. Aside from my mental health diagnoses, I’m also diagnosed with interstitial cystitis, a painful bladder disease. The treatments that I am using for it are called “installations”. Basically, every three weeks, I get catheterized so medicine can be put directly into my bladder. I’ve been doing this for over a year now. Most patients can go longer in between treatments, but since stress is a huge trigger for pain, it gets really bad every time I try to stretch out the treatments. However, because my stress has been greatly increased lately, so has my pain, so my doctor is having me do treatments every week for three weeks. The treatments help somewhat, but I still have a lot of pain and frequency problems.

Every four weeks, I also get to go to ECTs (electroconvulsive therapy treatment), and tomorrow is that lucky day. I hate doing it; I don’t want to go. Even though I admit that it was extremely helpful and was a big part of getting me out of a depressive episode I had last year, I still don’t want to continue with this treatment. It’s too much for my body; the past few times it tends to hurt more and more. My psychiatrist said since the treatments are further apart, my body isn’t used to them anymore. I also have a lot of memory loss from the treatments, but it has gotten better than when I first started. However, I don’t stop them because I’m too afraid of what will happen if I do.

A relationship of mine seems to be changing a little; it seems more strained than normal. This friend means a lot to me, to my entire life, and I guess the stress on the relationship is scaring me. I just thought I would say that, because I haven’t actually said it until now. I don’t let a lot of people in, so I don’t have a lot of friends; hopefully I’m not the one pushing this person away.

Well, I just needed to vent today. It was a rough one for me, but at least now it’s close to bedtime. It just seems that crap keeps happening; over, and over, and over again. I just wonder when it’s going to stop. I try to be positive all the time, whether it’s real or not, hoping that it will help, because I feel like that’s what I’m supposed to do. However, someone today told me that I don’t always have to put a face on, and I really appreciated that. So I decided to be 100% honest and admit that today, things suck. I have been extremely stressed out, very frustrated, overwhelmed, and I still made it. I even was able to clean my entire house, that’s how I like to get out my frustration. I’m unsure if tomorrow will be any better, but at least I’ll start with a clean house.

Clozapine Rechallenge – Day 16 Problems Arise

So apparently I have to go to the doctor today. It was either that or the ER, and luckily my PCP’s office had an opening. I was shocked. My psychiatrist was concerned about my most recent blood work, which took 3 times as long to complete as normal. My psychiatrist wants me to be checked for Clozapine-induced myocarditis. His reasons are because of my recent symptoms (which are now gone) such as shortness of breath, fatigue, chest and throat pressure, and eosinophilia (this is his concern from my blood work); as well as my previous reaction to Clozapine the first time I tried it, which was a high fever; and of course my genetics. When he refers to my genetics he is talking about my Ashkenazi genes.

I have an appointment in less than an hour and I’m ready to go. I’ve printed out my last 3 weeks worth of blood work and my psychiatrist’s notes. Hopefully nothing is really wrong; I’m sure it’s all fine. However, my stomach is killing me right now, probably from the anxiety.

Update: I went to the doctor and I’m not even sure that she really listened to me. I read the notes after the appointment was over, and half of them were wrong. It was extremely frustrating. Either way, they did more blood work and referred me to my cardiologist for an ultrasound. I asked if they could call to make the appointment, that way I could get in sooner, but they said they couldn’t do that. Then when I called the cardiologist myself, they said they don’t have my referral and can’t make the appointment until they have it. Now, I’m even more frustrated. My psychiatrist said I can wait on the ultrasound; I don’t have to go to the ER today, which is the first good news I’ve heard. I really am pretty sure everything is fine, I think it’s just a precaution. Although, the likelihood that I will be able to stay on this medication is decreasing. I’m doing everything I can to be able to continue taking the Clozapine, I’m just not sure if that’s enough.

Treatment-Resistant Bipolar Disorder

Treatment-resistant bipolar, also known as med-resistant, is something that most of us know too much about. Sadly, it’s extremely common. Being diagnosed as treatment-resistant generally depends on the number of medications a person has tried during the phase that individual is in. Many individuals have been through all sorts of different medications without much success. And then of course, if a person finally finds a medication that helps even a little, it comes with side effects that are too much to handle. I have been considered treatment-resistant by my doctors many times throughout my diagnosis. I have taken so many medications that I’ve lost track of them all. I’ve even lost track of the horrible side effects. I know that for me, Abilify sends me into a huge manic episode, Depakote causes me to lose my hair, and I gained 80 pounds on Risperdal. Those are just a couple examples of medications that I couldn’t handle.

Treatment-resistant doesn’t mean that there’s no answer; there are several individuals that are treatment-resistant that have gone into ‘remission’ for multiple years. I am one of those individuals. Somehow, I was able to live a regular life, work a full-time job, and have a full-time social life. I don’t know what happened or what changed, but after a little more than 2 years, something changed. I was still taking my medication and seeing my doctors, but it was as if I was a ticking time bomb. Then I exploded into such a massive manic phase that I had to leave my job and go live with family. I haven’t been stable since that time, but I do know it’s possible. Sometimes I wonder if I can ever get back to the place in life that I was at before. Honestly, I don’t know if it will or will not happen, but I haven’t given up.

There is always hope, even for those that are treatment-resistant. New treatments and medications are always coming out that could help. Sometimes, a certain combination of medications or treatments is the key to remission. It’s not easy to be patient, or willing to try new treatments, but you never know when one of these new methods will be the key to our health. I am always willing to research and usually try new treatments and medications. I am doing ECTs, electroconvulsive therapy, every month (I’m doing the maintenance treatments at this point), and I am doing a rechallenge of the Clozapine medication. The ECTs helped me get out of a major depressive episode. The Clozapine is supposed to help take away my suicidal ideations; it’s too soon to tell how effective it will be. My conclusion regarding treatment-resistant bipolar is that you never know when some new treatment or medication is going to help; don’t give up before the miracle happens.

Clozapine Rechallenge – Day 14

I’m still on the 100mg dose. My psychiatrist says that he’s keeping me at that dose because of the energy and fatigue that I’ve been experiencing. He doesn’t want to increase my dose until I can do some regular activities without having to nap for a couple hours afterwards. I’m very grateful that he’s not pushing the dosage increase. I’m supposed to start keeping track of this symptom using a number scale of 0 to 10, where 0 is none and 10 is the worst. This will be difficult to do, but I’ll try.

Today I woke up again with no side effects, and I even slept through the night. I won’t know how my energy and fatigue is until later in the day. I will rate yesterday’s energy and fatigue as a 5. It’s better than most days, but I’m still falling asleep if I sit down and rest for even a couple minutes.

I think I’m going to stop posting about my Clozapine rechallenge every day because it seems to be the same thing each day. If there are changes I will definitely post them, but I’m finally at 2 weeks, so I think I can cut back on these posts.

Clozapine Rechallenge – Day 13

I’m almost at the 2 week mark, which is where it all fell apart for me last time. However, this time, I’m doing so much better. I woke up this morning with no side effects; I’m feeling better and better every day. It’s amazing that I feel okay. No muscle soreness, no chest or throat pressure, no dizziness, no unsteadiness, and no fever. I am gaining weight, which can be a side effect of Clozapine. However, I was already gaining weight before I started it, so I don’t think that the weight gain has anything to do with the medication. I did get tired yesterday after running a couple errands and I ended up falling asleep on the couch for about 30 minutes total.

I stayed at 100mg again last night. I’m waiting for my blood work results to come in so I can get my next prescription. My psychiatrist wants me to have my blood pressure and pulse taken the next time I’m at the pharmacy. I will do my best to remember that when I’m there.

Inappropriate Phlebotomist: Difficult Blood Work Visit

I had quite an interesting visit to the lab today to get my weekly blood work done. I went to the same lab I normally go to, and as usual, I ended up with a new phlebotomist. I signed in for my appointment 10 minutes early and then sat down in the waiting room. Within a couple of minutes, a woman yells my name and says, “Come back and go to room 5”. Normally, they come into the waiting room to call your name and walk back to the desired room with you; I was already off to an odd start. I sat down and she entered the room moments later. I told her that they normally use my right arm.

She looks at me and asks if I’m okay. I said I was very tired, that it’s a side effect of the new medication I’m on, the med that is causing me to have my blood work done every week. Then the odd and inappropriate questions and comments began. She asked what medication I was on that required weekly blood work; I told her it was Clozapine. She asked why I decided to go on this medication; I reluctantly told her I’ve been dealing with suicidal ideations for 5 or 6 months. I didn’t want to answer her questions, but I have a hard time saying “no” to people. She asked if I see a therapist; I said I see both a therapist and psychiatrist; I informed her that I’ve been dealing with this since I was 14. She asked what I was being treated for; I told her I’m diagnosed with bipolar 1 and PTSD. Then she asked why I was diagnosed with PTSD. None of this is any of her business, but I was so uncomfortable and struggle to tell people to back off, so I hesitantly told her it was from a bad relationship.

Then she started to tell me that her husband was schizophrenic and he took medication too, as if that’s supposed to mean something to me and make it okay for her to ask me these questions. At this point, she began telling me what I should do to help my disorders, as if I don’t try to help myself and I don’t know what’s good or bad for me. She told me I should start doing some kickboxing or martial arts, which would help to empower me so I felt better. I told her I would think about it, but she kept telling me that I should do it. I explained that I had a double knee surgery and I have to take things easy, and she told me I was using that as an excuse. She asked if I used meditation; I told her it was something I was working on. Her next question was if I took time journal at all. I told her that I just started a blog and I found it extremely helpful. She responded by telling me that I should write everything out by hand, that typing doesn’t have the same effect. I told her that it works for me, but she kept telling me what I should do.

I called my mom as soon as this appointment was over and told her all about it. I don’t always know what’s appropriate and I needed to make sure I wasn’t overreacting. I wasn’t sure if being offended was necessary, I don’t trust my emotions lately. My mom reaffirmed my emotions. She told me that it was okay to be upset; this woman should not have asked me these questions. My mom told me I was “should on”. She made me laugh and loosen up a little bit. Since I struggle so much with saying no, my mom helped me find the appropriate words in case it happens again. I can say, “I’m not comfortable with this conversation. Can we please stop talking?” She also told me that I could talk to a supervisor if I wanted or I could simply ask for another phlebotomist. Talking to my mom validated the emotions I had about my experience. While I decided I don’t want to do anything about it unless it happens again, my mom helped me feel more comfortable with what I could say if I decide to talk to a supervisor about it. After having a short conversation with my mom, I felt as if I could take control next time; I could decide what I’m comfortable saying. I’m no longer nervous about my next appointment. I always feel more comfortable after talking with my mom.

My Side of the Pole

Bipolar – Mental Health

Tag: Clozapine