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.

Gift Giving Is A Gift Itself

Everyone has something they enjoy doing. When you’re dealing with depression, those things you normally enjoy seem to become work instead of fun. One of the things I like to do is search online for gifts to give my loved ones. I even tend to enjoy it when I’m going through a depressive episode. I greatly enjoy giving people personal and meaningful gifts, something that they would enjoy. I don’t always know why I like doing this so much; I just do. Better yet, I’ve been told by many family members that I’m really good at it. I suppose that when I’m looking for the perfect gift for someone, I think back through all of my memories I have with that person. I think about that individual, what they enjoy, and I get to replay our good times together. Then, when I give the person their gift, I get to see the enjoyment on their face and/or in their voice. All of that is a gift that I get.

For example, my brother just got married and I gave them a set of four stone coasters. Each coaster had a different vintage map on it; his new wife is into vintage things. I put a different map on each coaster. For their honeymoon, they went on a cruise. I looked up their cruise and found out where it was going. I put the different places they went during their honeymoon on the coasters. That way, every time they use the coasters, they would remember their honeymoon. I wasn’t sure if they would like them or not, but they ended up loving them. I really enjoyed hearing the excitement in their voices and their thank you card when I heard from them shortly after they returned, which was a great gift to me.

I’ve already started my Christmas shopping this year; actually, I started at least a month ago. I keep a list of all of my ideas, that way I don’t forget since my memory is so horrible. Then I buy a couple of things here and there. This makes it easier for me when Christmas comes along; it takes the stress off during the holidays. I don’t have to spend one large sum of money all at once; I just spend a little bit at a time. I’m not pressured to come up with gift ideas in a short amount of time. Why didn’t I think of doing this earlier? The only problem is that I get so excited about the gifts when I get them in the mail (since I do almost all of my shopping online) that I have a hard time waiting to give the gifts to each person. I’m doing well so far this year; I haven’t given anything away early.

Monthly ECT

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.

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.

Bipolar Disorder Affects Our Friends and Family

Personally, I mostly think of how much my bipolar disorder affects my life. Bipolar disorder causes my personality and capabilities to change over time. I can be happy one moment, and then suddenly I’m crying. It’s not always this extreme, but my moods do shift without having the power to control them or even know when they’re coming. I’m lucky to have family and a couple friends that are extremely supportive of me. However, no one is perfect. Sometimes one of them may say or do something that upsets me and my mind automatically thinks, ‘Don’t they know what I have to deal with? And they’re complaining because of how my disorder affects them?’ It takes me a little while, but then I realize that my disorder has a huge influence on those around me, especially those I’m close with.

I have to work very hard at remembering that I’m not the only person my bipolar disorder has an impact on. Even when my loved ones are educated, they’re still human, and some of my symptoms can be extremely difficult to live with. This is true especially when I’m in a manic or depressive episode. Recently, I was experiencing a mixed episode, some of my manic symptoms included constant fidgeting, increased talking, and was barely sleeping. It took me a while to realize that my symptoms were also affecting my family, especially those I live with. One family member recently said something that hurt my feelings. All I could think was how I didn’t have control over what I was doing, and I felt as if this person was blaming me for that. It took me a while, but now I realize that my family has to live with bipolar disorder as well.

Many individuals diagnosed with bipolar disorder at some point struggle to work. Personally, I went through a huge manic episode with psychosis that caused me to be unable to work at all. I have been on Social Security Disability since 2009. I still bring in some money thanks to SSDI, but I don’t make the money that I used to make. For many people, this type of situation often causes problems in families and couples. Our support systems often feel helpless because they can’t fix us, and they often can’t even understand us when we’re manic. But they’re not helpless. They can help to make sure we are taking our medication, help us come up with strategies to reduce stress, encourage us to contact our doctors, and if necessary they can contact our doctors if given permission when we have failed to do so. These are things that my family helps me with.

It’s a lot of work to be the support system for someone with bipolar disorder, or any mental health illness. Our loved ones can experience emotional and financial distress, they often have interruptions to their routines, they have to learn to handle our unusual and sometimes reckless behavior, and the stress they experience can often cause health problems. There are support groups and meetings for our loved ones, just as there are support groups that we can go to. It’s vital for our support system to receive support; otherwise, they won’t be able to be there for us. If we want someone to be patient with us, then we need to be patient with them. It’s much easier said than done.

My Side of the Pole

Bipolar – Mental Health

Month: April 2016