Clozapine (Clozaril) can be a frustrating medication to be on. You have to get blood work done every month just to be safe because the medication can have some serious side effects. I’ve never had any problems with the possible serious side effects from Clozapine, but I have had problems getting the actual prescription filled every month for the past year.
I go and get my blood work done (on time, like I’m supposed to), but the pharmacy I go to does not have it together. They always deny getting my lab results, so I end up calling the lab and having them re-send the blood work results. The pharmacy has even told me a couple of times that they weren’t there when the lab faxed over my results, which is why they don’t have them. That is complete crap. Even if my results were faxed over in the middle of the night, they should be there waiting for the pharmacy when they open.
Yesterday, I thought I found a new pharmacy. I talked to the pharmacist, and they were able to register me in the Clozapine database; however, they could not accept blood work results from the lab. So, it looks like I’m going to be staying at the same pharmacy I’ve been struggling with for the past year. I guess, I’m just going to have a sit down with the pharmacist and see if I can get everything figured out.
I take a lot of medications; most I take daily, and some are taken as needed. I keep very close track of my medications and when they need to be refilled. It’s a big task, but I make sure I’m on top of it all. I have a problem filling my Clozapine prescription every month. I have to do monthly blood work. The pharmacy won’t fill the Clozapine without the blood work results. Filling this prescription is an issue every single month.
Every month, the lab forgets to send the pharmacy my results. It’s always a huge hassle. Even though I filled out the paperwork, I still have to convince the lab to send my results over. I shouldn’t have to call the lab every time. At least I’ve found a way to make the phone call easier and shorter.
I refill my prescriptions about a week early (they can be filled from approximately 3 to 7 days early depending on the script). If I start early (at the 7 day mark), then it’s okay if they run into a problem. I learned this the hard way. Running out of prescriptions is not fun.
This is the third time in a row that I’m having problems getting my Clozapine prescription filled. The lab automatically faxes my blood test results to the pharmacy, but for some reason, the pharmacy cannot find them. Yesterday, the pharmacy told me they didn’t have the results without even knowing my name. Then I told them my name and said that the test results normally go straight into my file. Less than a minute later I was told again that they don’t have the test results.
I called the lab and left a message for them asking them to resend my blood work to the pharmacy. Today, I will call the lab again just to make sure they got my message, and then I will call the pharmacy again. If I’m still having difficulties, then I will just show up at the pharmacy and ask to speak to the pharmacist. I really wish it wasn’t this difficult getting my Clozapine script filled.
Yesterday, I dropped off my weekly Clozapine prescription at the pharmacy. I asked the pharmacy technician if she could check to see if my lab work had come in. I told her that it gets faxed over from the lab every week, and that someone from the pharmacy normally puts a copy in my file. She looked at me weird, and said, “We don’t do blood work here.” I explained to her again, that I get my blood work done at a lab and then the lab sends my blood work to the pharmacy so I can get my prescription filled. She still didn’t understand; she told me again, “We don’t do blood work here anymore.”
Wow, I was surprised at how ignorant this woman was. If she had just taken 30 seconds to listen to my explanation, then she would understand. At this point, she went to the back of the pharmacy with my prescription. When she came back up front, I asked if she found my blood work results. Her response was, “I don’t know, I didn’t look.” I was so baffled that I just decided to leave instead of try to get this woman to understand me. I asked her to please call me if there were any problems filling the prescription.
Luckily, they were able to fill my prescription. The pharmacist must have found my blood work in my file. I think they’re finally getting used to receiving my blood work results and having me filling my weekly Clozapine prescription there. The pharmacy technician I had this odd interaction with was new, so I can understand her being confused; however, if she had just listed to my explanation, she would have understood easily.
I’ve decided to write about my story, piece by piece. I’ll begin with my childhood and work my way up. I’m doing this because my memory is horrible and I’m trying to remember my life; I thought that writing out my story could help.
Growing up, I was a very happy child. I easily kept myself busy and entertained. My mom worked from home, so I spent a lot of time with her. My dad ran his own independent pharmacy. I also spent a lot of time with my dad at his pharmacy. I was happy to spend time with both my parents; I loved being with them. I’m the youngest of three children. The town I grew up in had about only 3,200 people. Everyone knew me because of my parents. My mom never had to tell me ‘no’ until I was 6 years old; I was a really good kid in the beginning. She could bring me to her meetings and appointments, and I would keep myself busy playing with rocks and sticks.
School was a breeze for me. I never spent much time working on school work; all of it was done while I was still at school. I don’t remember studying for tests, but I aced everything. I didn’t start getting in trouble at school until I was in middle school. I stayed busy outside of school. In my spare time, I rode horses, played the piano and several other instruments, and went skiing. I even rode horses competitively for many years and did pretty well. My first horse was named Houdini and my second horse was named Copperfield. I spent most of my free time at the barn. I worked there for a while doing things from mucking stalls, to teaching riding lessons, and helping to run summer camps. I’m used to working; my dad had me and my siblings working at his store on Sunday mornings at the very least. It taught me a lot about responsibilities.
My dad decided to take flying lessons one day. He ended up getting his pilot’s license and the two of us would go flying sometimes to different mountains to go skiing, sometimes just to go flying for the fun of it. Spending time with my dad was always a blast. The two of us were adventure buddies. I was always up for anything.
I also remember holidays with my family. Christmas was at our house. Thanksgiving was always at my aunt’s house. There were usually more than 20 people at these holiday events. My parents taught me that family is always there for each other. We support and love each other unconditionally. My entire life, I always knew I was loved. When I would get in trouble, my mom would say something like “I love you, but I don’t like your actions.” Not once while I was growing up, or even now as an adult, have I ever questioned whether or not I was loved. I had an amazing childhood; I know how lucky I was to have such loving parents and family.
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.
Decoding Bipolar nominated me for the Liebster Award. Thank you so much, I’m honored that you thought of me. I love reading your posts; you have so much passion in your writings.
The 2016 Liebster Award is an award that bloggers give to other bloggers; it exists only online. The Liebster Award began in 2011. The award supports the blogging community and brings bloggers together.
The updated rules for the 2016 award are as follows:
- Thank the person who nominated you and include a link to their blog.
- Display the award on your blog.
- Write a 150-300 word post about your favorite blog that is not your own. Explain why you like the blog and provide links.
- Provide 10 random facts about yourself.
- Nominate 5 – 11 blogs that have less than 200 followers for the award.
- List the rules in your post.
- Inform your nominees that they have been nominated for the Liebster Award and provide a link for them.
- Create 11 questions for your nominees to answer.
I found the official updated rules at The Official Rules of the Liebster Award 2016.
10 Random Facts about Me:
- I got sober at 19 years old and have been sober since then. I have 12 years of sobriety and very proud of my sobriety.
- I love learning. School was always fairly easy for me. However, it takes me a while to read because I tend to see a couple of letters and make up the rest of the word, and it’s usually wrong.
- I’m so hard on myself that I can’t even be proud of my 3.94 GPA that I earned for my bachelor’s degree, during a bipolar and PTSD breakdown.
- I’m extremely gullible. I pretty much believe anything I’m told. My husband likes to have fun with that.
- I played the piano (along with many other instruments). I miss playing and want to spend more time practicing.
- Family is the most important thing to me. Nothing comes above family.
- I married my best friend, who is 11 years older than me. I have 2 step-kids that are all grown and now I even have a granddaughter!
- I have a 10-year-old dog that is very well-trained. He is an 88 pound pit bull, dalmatian, english pointer mutt. His name is Cash, after Johnny Cash.
- I’m very organized, sometimes obsessively. Everything in my house is organized by color, shape, size, as well as alphabetically. The hangers in my closet are all 1 finger space apart.
- I grew up in a small country town in Connecticut with only 3,284 people. I often miss the small country town.
My favorite blog:
My favorite blog is called Story of My Life, it is written by a military man who deals with PTSD, depression, and attempted suicide. Dave, the author of the blog, displays honesty in his writings in a way that makes me feel as if I’m having a private conversation with him. I can relate so much to his struggles with PTSD. Even though the reason for our PTSD diagnoses are very different, I still feel as though I can relate to what he writes about his experiences and ideas. I think that is the best part about his blog, it makes me feel. He writes in a way that connects to my mind and my heart. It makes me feel more comfortable knowing that there is someone else out there that understands how I’m feeling and what I’m going through. A writer that can convey emotions to his or her readers is an extremely talented individual. If feels as if he writes the way he would speak, which also provides a level of comfort to the readers. Dave is also very open about his life experiences. I respect his blog and him as an individual. His honesty and openness have helped me to feel more comfortable in my own writing. He has made a huge difference in my own blog because of these characteristics.
I nominate the following bloggers for the 2016 Liebster Award:
Story of My Life
Bipolar is NOT who I am
My Bipolar Life
Closer to the Middle
Tony Vega dot Net
Wallflower or Butterfly.
The questions I was asked and my answers are:
- Is there a negative experience in your life actually turned out to be a blessing in disguise? If so, what and why?
I was an active drug addict and alcoholic, using any drug I could find. Around the time of my father’s death, I started smoking crack. This took me downhill very quickly. I wasn’t even at the hospital with my dad when he died because I was out getting high with my fiancé Chris. A couple of months later, Chris was killed. Everything in my life was falling apart. I couldn’t handle anything anymore. One day, I came home to my mom and said, ‘I hate my life, I want to go back into the hospital’. My mom told me that the hospital won’t change my life, but she had been looking at other places that could help. That’s when I agreed to go into a year-long residential drug rehab program. I honestly believe that I’m sober and alive today because I went to that rehab. My experiences while using and getting sober have made me who I am today.
- What is the one thing about yourself you want the world to know?
I work hard at everything I do including every job I do and every relationship I have. I also follow through on all medical advice and requirements including appointments, medications, research, and tasks. I do my best to stay open to new ideas, even when they scare me.
- Underneath what you do, your diagnoses, and all of the clutter of life, who are you as a person? How do you see yourself?
Underneath everything, I am a family member. I belong to two families, the family I grew up with and the family I inherited from my husband. I see myself as someone who is always there for their family and would go above and beyond to be there for them. I am a loving, caring, and considerate family member.
- Has your diagnosis (diagnoses) affected your life in a positive or negative way (or both)? Why? If you are the loved one of a person suffering from mental illness, how has their diagnosis affected your life in a positive or negative way (or both)?
My diagnoses have affected my life negatively because I have withdrawn from all of my friends during depressive episodes. I have been unable to work for the past 7 years. I’m also terrified to do new things, which makes life very difficult. My diagnoses have affected my life positively because I made some strong connections with people through mental health support groups who have supported me through good and difficult times. My diagnoses have allowed me to relate to others, become more considerate of the needs of others, and help other people even when I don’t realize it.
- If you could live a life free of mental illness, would you? Why? If you are the loved one of a person suffering from mental illness, how would it affect your life if your loved one answered yes or no?
Yes, if I could, I would live a life free of mental illness. I still would have gotten sober and met my husband. Without mental illness, I would not be on disability and I would be able to work, which I truly miss.
- What is your favorite non-physical thing about yourself? Why?
My favorite non-physical thing about myself is that I love others fiercely. I take great pride in all my loved ones and I do my best to make sure they know how much I care about them. I’m also an excellent gift giver, and I love giving gifts to other people.
- What is your deepest fear? Why?
I have a lot of fears, but my biggest fear is losing a family member, especially my mom. My mom is my best friend and I rely on her for so much. I don’t know what I would do without her. Even thinking about it now is terrifying.
- What is one thing you cannot live without?
I don’t think I could live without pictures. I spend a lot of time looking at all of my photographs. I’m very nostalgic, plus, pictures also help me remember things that I have forgotten due to medication and treatments.
- What’s your favorite place and why?
There is a single tree in a field a couple of towns over from my mom’s house in Connecticut. This tree is absolutely beautiful and helps me relax. It also brings back some wonderful family memories.
- You are given a time machine. You can go back and change one thing from your past. Would you do it? Why or why not? If yes, what would you do differently? Be sure to think of the potential effects it could have on any future events.
I would like to think that I would go back and somehow save my dad from dying, but I don’t know if that would even be possible. However, if I did, then that would change so many things. Even though my life has been pretty tough, I still believe that I’m very lucky. I have a husband that loves me, a mom who is my best friend, and I’m 12 years sober. Despite the fact that I struggle daily with bipolar and PTSD, I’m lucky to have these things in my life. I miss my dad every moment of every day, but it would worry me to change the past because of the effects it could have on the future.
- If you could have any career and there were no obstacles to this, what would it be?
If there were no obstacles and I could have any career, I would be a pharmacist. My grandfather and father were both pharmacists, and my aunt is still a pharmacist. When I was a child, I grew up always dreaming that I would follow in my family’s footsteps. I saw my grandfather, father, and aunt make a huge difference in many people’s lives, and I always dreamed of being like them and doing the same thing when I grew up.
The questions for my nominees are:
- What have you found to be the most surprising or unexpected benefit of blogging and why?
- What positive character trait do you have that you wish you could share with others?
- What is the newest activity or most recent learning experience you have had in your life?
- What aspect of your life would you most like to bring into balance? Why?
- What form(s) of art are you most attracted to or moved by?
- If you could travel anywhere in the world without worry, where would you go? Why?
- What is your favorite saying or quote?
- What individual inspires you the most and why?
- Describe a situation where you reached out to someone and it helped you feel good.
- What brings you the most joy?
- What decision or action has had the most impact on helping you through a bipolar or mental health episode?
Friday was the beginning of the Clozaril rechallenge (generic is Clozapine) process. I had my blood work done; there was some difficulty getting the lab to send the results to my doctor and my pharmacy. It was partially my fault, I did give them the wrong fax number for the pharmacy, but it took 4 phone calls to try to fix the mistake. Even when they finally said the problem was resolved, it turns out that it wasn’t; the pharmacy never received the results. Luckily, I ended up talking to one of the nicest and most caring pharmacists since my father and aunt. He was happy to call the lab himself and request my results so that I could get my prescription. Once he got my lab results, he realized that I had to be registered again in the Clozapine Database because I hadn’t taken the medication since this past summer; all patients need to be registered by both their pharmacist and their doctor. My pharmacist told me he would call me once the registration is complete so I can get my prescription filled. There aren’t many pharmacists that are as polite and happy to help as he was.
Sometime tomorrow I should receive a phone call from the pharmacy letting me know I can bring in my prescription. I admit that I am nervous. I’m not nervous that I will end up with some of the horrible side effects of Clozapine such as neutropenia, which is an abnormally low level of white blood cells, making the patient susceptible to infections. This is why there are so many protocols with Clozapine. I feel like I should be nervous about it, but I’m not. What I am nervous about is the fact that I don’t know if this will work or not. I’m trying to remain positive; I keep saying that this time it will work, I won’t get a fever, I won’t have to go to the hospital, and there won’t be any problems. I’ve been so nervous about this rechallenge, my anxiety level has been much higher than normal; I’m anxious even sitting at home in my comfort zone.
Is this weird that I’m more concerned the medication won’t work than I am concerned that the med will cause serious side effects? I think it’s just because I don’t know how much longer I can live like this. I have had suicidal ideations for more than 5 months. My hallucinations keep getting worse making the paranoia intolerable. And in my mind, the worst part of it all is that I won’t do anything about it. I can’t take my own life, no matter how much I think about it. I know that technically that’s a good thing, but if you lived in my mind for even a day, you would understand. Every day I put a smile on my face and do my best to pretend everything is okay, but inside I’m a disaster. I want to live and be happy to be alive. I need this medication to be the answer. I’ve taken pretty much every other medication and I still do ECTs. I currently take 7 other psychiatric medications, 2 additional meds to treat side effects, and 3 other medications for physical conditions. I just need to catch a break, I’m hoping that will happen with this Clozapine rechallenge. We’re all about to find out.