Taking Psych Meds as Prescribed

I don’t think I’ve ever really taken medicine from the pharmacy the way it was intended. I know I never read the package inserts. Or I rarely do so, I should say. Recently I had a chance to attend the Maryland DUR (drug utilization review) board meeting held virtually in my area. It was eye opening re: pharmacy procedures and protocols, and also alerted me to what I didn’t notice about my own pharmaceutical issues.

When you get a prescription filled, there’s typically a ton of paperwork involved. You may have a paper script from your dr., you’ll need to fill out intake forms at the pharmacy when it’s your first time there, and you have to wade through lengthy insurance processes to get certain medications authorized. The last thing you want to do is read anymore papers or research how to take your meds properly.

When I’m given my medication bottles, I tend to throw away the package inserts and only handle the physical bottles. What I didn’t realize is that by doing this, I was missing vital information about how to take my pills. Additionally, without a regular consult from my prescribing physicians or the pharmacist, it’s been hard for me to recognize the importance of label reading/following the directions.

Lately I’d been noticing a recurrence in my bipolar symptoms. And I also saw an increase in other negative behaviors associated with my chronic health conditions. It was concerning to me and my support team. Then I realized that part of the problem is how I’m taking my medicine, and my adherence, or lack thereof, to the strict guidelines given with each medication.

So, I pulled out all my pill bottles and decided to read the labels. Boy was it enlightening. Take, for example, Ritalin or methylphenidate. On the back of my bottle it reads, “take this medicine 1/2 to 1 hour before meals.” And, “Check with your doctor or pharmacist to make sure it is safe for you to take this drug with all of your other drugs.” I never knew I was supposed to do this.

With my buspirone, the front of the bottle says, “take 1 tablet by mouth 2 times per day.” And on the side of the bottle there’s a table that indicates I should take one tablet in the morning and one in the evening. Until this morning, I’d never seen that part of the medication label. I’d never put together what two times per day meant. After reviewing all of my medicines, I knew that my symptom issues largely had to do with incomplete compliance with directions.

Part of me is annoyed that it took this long for me to figure this out. And part of me knows that this is a better late than never situation. Had I not attended the DUR meeting, I wouldn’t have thought about reviewing my medication history and going through my supplies. Sometimes it takes an event outside of your control to help get you back on track. In my case, it was an educational event I attended for the purposes of my advocacy work. So this turned out to be a blessing in disguise.

December 6, 2021 0

Getting Med Refills Each Month as a Disabled Person

As a patient living with multiple chronic, mental and physical illnesses, it can be a challenge to receive your medication on time each month. One issue faced by people is how the doctor chooses to fill the prescription; monthly or every 90 days. Each option means you have to keep track of your meds and remember when you last filled them so you can keep up with the script schedule.

Another issue you may face is wait times at the pharmacy. Due to covid and distancing procedures, getting your meds can take twice as long as it did in the past. And even calling your pharmacy on the phone can be a daunting task. Pharmacy staff is often overwhelmed by customers in person and on phone lines which causes everyone to wait longer. It’s understandable, but frustrating.

Some doctors choose to e-file your scripts while others still rely on giving patients hard copies of their hand written prescriptions. This causes more lag time for patients and ultimately ends up in longer wait times at the pharmacy. The goal should be to minimize stress for those who are already dealing with a lot, not to bog them down in minutiae and red tape.

Those patients who take multiple medications often need pill minders and med calendars to help monitor their monthly intake of medicines. Otherwise it can get confusing as to what they’ve taken and when. One tip given by a local pharmacist is to keep your empty pill bottles each month (in a safe case) so you have the dates when last filled and any necessary med information needed in order to remind yourself when to next fill the scripts.

Do you have challenges filling your meds each month? You can always ask questions, at the pharmacy, at your doctor’s office, and whenever you feel you need more information. Getting your medicine shouldn’t be confusing. It should be a smooth process and one which facilitates part of your medical care.

October 22, 2021 0

Bipolar and Menopause, UPDATE

I’m on my millionth night of little to no sleep, and I just started singing to myself, “this manic moment…” to the tune of Ben E King and The Drifters’ iconic song. It’s the middle of summer, and my mania seems everlasting. What began as hypomania in the middle of the spring, has turned into full blown mania that won’t quit.

Usually, I can get a handle on things and the hypomania dies down long before this point. But this time its spinning out of control and I can’t seem to get my meds in synch with my moods. It’s frustrating.

Adding to the confusion is the onset of menopause and my thyroid disorder. I have a nodule which is wreaking havoc with my mental and physical health. The thyroid nodule is increasing my night sweats, anxiety, irritation and hyperactivity. And so is the change of life. It’s like a double dose of hormones and agitation thrown at me all at once. I feel like I can’t cope.

My brain is going haywire. Sometimes I’m not sure which emotion to use for a scenario or which facial expression. I notice myself singing a lot more, loudly, and laughing at inappropriate times. This is all troubling.

So what to do about this dilemma? Well, I’ve made an appointment with a new therapist and I have a new sleep doctor and neurologist as well. I will be discussing these issues with those specialists and asking for their guidance. I also need to work on my sleep hygiene and diet. But for that, I need to the help of a nutritionist or dietitian. My eating disorder has also been affected by these illnesses.

I’m not daunted by everything that’s happening but I am appropriately concerned. But as long as I keep in touch with my doctors and have a solid support system, things should work out just fine.

July 8, 2021 0

Bipolar Disorder and Menopause

I’ve had bipolar disorder for as long as I can remember. But only recently did I start experiencing the symptoms of menopause; early menopause, in fact. I’m learning how to manage the two together, and let me tell you, it isn’t easy.

Bipolar is an illness which makes it harder for you to tolerate stress. And also stress brings on the symptoms of bipolar disorder. It’s such a conundrum. Being menopausal is a stressful situation. Your body is changing, you are experiencing fluctuating hormones and moods, and you’re having hot flashes.

All of this can make you susceptible to a manic, depressive or mixed episode, which you have to address in addition to the menopause symptoms. It’s one of the hardest things I’ve ever had to do.

One thing that’s helping me is to chart my symptoms and notice which condition they correspond to. I note my meds and how I’m taking them and also my sleep patterns. It’s a lot of work. The things that have changed the most are my appetite and my sleep. I’m either ravenous or not interested in eating at all. And I’m not sleeping well.

Menopause keeps me tossing and turning all night long. This is disastrous for me because for me because it’s adding to my anxiety and mania. I can’t seem to get a handle on the elevated moods because I can’t sleep. Sometimes I’ll go two days without resting. I’m both exhausted and wired.

What I’ve decided to do is roll with the punches and not fight my body. It’s tempting to try and actively manage this, however I’m willing myself to just relax. It’s similar to what I do with my ocd and intrusive thoughts. In the same way I don’t fight against my ruminating brain, I don’t force myself into recovery mode. Slowly, things are easing up, and lately I’ve been able to catch a few naps here and there.

Meditation is another coping skill I’m learning to use. I’m checking in with myself more often and learning how to access mindfulness techniques. This helps me to sit with confusing feelings and negative ideas. I notice this is effective for my suicidal ideation too. Ideation which is seeming to subside these days.

One positive thing about experiencing menopause at 46 is that I feel more confident and sure of myself. I’m used to weathering my ever changing brain, and somehow adding aging issues to the mix makes me feel more empowered. I believe it’s because I’m doing this as a single parent. I’m realizing how capable I truly am.

Bipolar and menopause are a fiery mix. Though things are up and down with my moods, overall, this challenge has been a great learning experience. I wouldn’t change anything, well, except for getting more sleep. But I guess we could all use that.

July 2, 2021 0

Dealing with migraines, anxiety and bipolar

I’ve had migraines since I was a child. As long as I can remember I’ve been dealing with them. My earliest recollection is laying down in the nurse’s office in 4th grade, with one hand on my stomach and the other flung across my forehead and eyes. Even though it was dark, I could still sense light trickling in from somewhere. And it hurt. The nausea was excruciating and I just wanted my mom to come to the school and make everything better for me. That was the beginning of my long history with migraine headaches.

For years, those headaches were the only complaints I had. Being active in sports and social activities didn’t allow me to notice anything extra. But then I was diagnosed with ADHD, bipolar disorder, and anxiety. My life drastically changed. Things weren’t only different because of the mental health diagnoses. But I also had to adjust to how my mental and physical health were so intertwined; both symptom and treatment-wise.

It seems like everything about my illnesses and medication regimen intersects. Sometimes I feel like I’m running on a hamster wheel, trying to keep up with it all. if I get a migraine, I have to be careful which meds to take to alleviate it. The wrong ones can send me into a depressive episode. Or into mania. And just having the migraine itself is a threat to my mental wellness. If it lasts too long, I’ll get sick mentally. And the headache always brings a bout of anxiety and panic symptoms with it. Which is another assault to my system.

My body just can’t handle the weight of physical and mental illness together. It’s too stressful. So I’m always vigilant, making sure to take care of my neurological health so that I don’t have any mental side effects. It’s a unique and specific dance I do every day just to stay healthy. And it’s extremely exhausting at times. But lately, I’ve been well on all fronts, which makes me very happy.

February 24, 2017 1

When Spring Brings More than Flowers

It’s only mid-February. Winter is here in almost full force in the DMV area. But I’m already looking ahead to spring. Not so much in a good way though. It’s more a feeling of dread. Mania hits me every single spring. No matter what I do. I can take all the vitamins and minerals that are supposed to alleviate mental health issues. I can fast or drink only water. Consume nothing but juices and berries, restrict carbs, and take my psychiatric meds…. nothing helps. And most things make it worse, so much worse.

One doctor finally explained that my circadian rhythm just doesn’t adapt well to the extra hours in the day. Well, great. I feel like the only person on earth allergic to sunlight in this way. Ok I know that’s not true at all. But when I’m feeling sorry for myself or hating my bipolar illness, it seems to be so.

It’s happened each spring since I was a teenager. As soon as the time moves forward an hour and I’m exposed to more sun, I have a pretty major episode. I’ve even started to notice physical changes during those times. My skin glows, my eyes and hair are extra shiny, it’s crazy. Sometimes my eyes actually turn more hazel than dark brown during spring mania. I remember having a kind of ‘glow’ when I was pregnant. This is like that glow, but on steroids. It’s that much more pronounced.

A good friend of mine commented on my change in appearance once during an episode. She said she couldn’t put her finger on it but that I looked noticeably different. Possibly younger, even. She asked what had caused me to radiate like that. She was suspicious, I sensed. She didn’t ask any more questions and we just let the uncomfortable silence hang in the air until I left. It normally would have been embarrassing but since I was in the throes of mania, I took it as a complete compliment. I thought everything was simply wonderful and I was happy everybody else thought so too.

One time in college during one such episode, I was racing to a job interview. And I do mean racing! I was going so fast that I sped past a cop while blowing through a yellow light that turned red. Of course I got pulled over. I remember the officer was so annoyed that I was in such a ‘good mood’. He kept trying to bait me into an argument about why I was going so fast. And he insisted on repeating that he should give me a ticket. I just kept saying, “Ok” to whatever he said, and smiling like I had gone mad. Finally he threw my license back at me and stormed off. To this day I don’t know if he understood what was happening or not. But at least I didn’t get a ticket.

I’ve recently begun to read articles about spring mania. I’m glad that others know what this is like, though I hate that we all go through it. Nothing good comes from my springtime mania, and I almost always end up in the hospital. The last major episode I had was when I went to Los Angeles one April to visit a relative. That was a mistake. Not the trip, mind you, but the timing. I should have paid more attention to my symptoms. By the time I got on the plane to LA, I was already fully manic. I know that now. When I got home, I’d stopped sleeping and eating. I had the inappropriate cravings I only get during mania. And my mood was off the charts. Needless to say, I had to get sorted out at inpatient. I’ve since learned that changing time zones during travel can cause a manic episode. Good to know!

I keep looking outside and seeing the gloom winter brings with it as an unwelcome +1. I know that we have a ways to go until the time changes and spring comes blossoming in. But I’m still preemptively nervous. I hope this time things go well and I am thinking positively. But I’m also prepared for what usually occurs. I don’t want to say it’s inevitable, but that’s how I feel sometimes. Here’s hoping the upcoming season only brings showers and flowers for me and those who experience spring mania.

How to stay well in the spring with bipolar disorder:

Make sure to get plenty of sleep. Regardless if your body wants it or not.
Eat a well-balanced diet. Food definitely plays a role in how our episodes play out.
Take your meds exactly as prescribed and be sure not to skip any doses. *If you take medication, that is.
Monitor any symptoms that may occur, as soon as you notice them. Then check in with your health care provider.
If all else fails, and you end up getting sick, please be kind to yourself. Get the appropriate help needed for the situation and don’t get frustrated with any setbacks.

February 17, 2017 0

Fighting My Demons

Nobody ever sees what you don’t do. The things you know are wrong & shouldn’t do, the things you’re tempted to do… But don’t. What you almost did that time. The close calls. The near misses. The internal struggle between right and wrong. No one can see that.

They can’t appreciate how hard you work to silence the ghosts calling you to revisit old habits. Those pesky things sneak up out of nowhere trying to catch you off guard. Oh the tricks they play… But sadly, no one understands this private journey. Because it’s invisible.

They only see when you actually do stumble. Maybe you’ve resisted for the longest time, say 20 years. And then 1 day you finally slip. Someone will always be there to laugh and say ‘I saw that!’, with a disapproving glare. It’s so frustrating. All you can do is hope for the day when someone sees all sides of you and still wants to interact.

August 1, 2016 0

Delusions

My kids used to live in West Africa. They moved there with their father’s family when I got sick. Staying in contact with them was easy enough; if the phone or skype was working. We used magic jack to talk, but sometimes it was out of service. For the most part though, I could talk to them whenever I wanted.

One time before they were set to return, I hadn’t been able to contact them for about 2 weeks because their phone was broken. I happened to be going through a dark depression that was made worse because of my mom’s ordeal with cancer. I really wasn’t well. Out of the blue, I started feeling paranoid that my family was tricking me about the kids. I had this sinking feeling that maybe I hadn’t talked to them because they had actually passed away. I thought that Senegal or ‘in Africa’ was just a euphemism for them being dead.

Maybe people thought I was too unstable to handle the truth and so they made up this elaborate story to try and protect me. Maybe they weren’t going to tell me until I was safe and not going to hurt myself. These are the thoughts that raced through my confused mind. I started grieving for my kids as though they were truly gone. I actually felt the empty pocket where my heart once was, and the negative space in my soul that one feels when they have lost a loved one. Everything hurt in a way it never had before. I walked around the house like a zombie for most of that day; touching their things and sobbing. I didn’t know who to trust to figure out what was happening. I spent hours trying to piece together the memory of when I last spoke to my children. Nothing came. I was in panic mode all afternoon. Why couldn’t I remember? Who would tell me the truth? Nobody, I felt that everyone I knew was in on the ruse.

Finally at some point in the evening, I got a phone call from my ex-husband telling me that he had just spoken to the kids and that they were doing well. He updated me with the latest goings on and how school was progressing. I wasn’t sure he was telling me the truth until he said that I should call and talk to them. I don’t think he had any idea about my thought process, but he must have sensed that I was apprehensive. Of course I rushed to call the kids as soon as we were done talking. At that point, even before the phone connected, I felt like everything was ok. I knew he wouldn’t go that far with whatever story I had concocted in my mind. He just wasn’t like that, alhamdulillah he’s a nice person. Talking myself through the paranoia helped calm me down and start to think more clearly. Then, of course, I was able to talk to my kids. This stopped the delusion altogether and I started to feel a bit better.

An interesting thing. Even though my fears were unfounded, I was extremely exhausted by the end of the night. I had spent the whole day grieving for my children, trying to get a hold on my memory and sanity, and trying to understand how long I had been in this state of confusion. It was one of the worst days of my life. I was so tired after talking to the kids that I had to rest and sleep for a few days just to get my strength back. This doesn’t happen to me often. But in a depression that includes psychosis or in mania where you lose touch with reality, this can happen. Thankfully, I haven’t had an experience like this in several years. By the will of Allah, I’m hoping to keep it that way.

August 1, 2016 0

Learning to Accept Mania

“Sakinah, can I ask why you got another tattoo? I just want to understand.” Someone said this after I had gotten my latest ink during a bout of mania. A simple “I don’t know”, had been my answer then. Regretful, and filled with shame, I thought I owed this person an explanation. But I didn’t have one. I mean, hey, I was manic. It seemed like a good idea at the time. Everything seems like a good idea when you’re in that mode. But I couldn’t say that. Nobody I know would understand what that means. Considering I’m a pretty ‘by the book’ Muslim, how could it seem like a good idea to do any of the things people do during mania? Those things are forbidden to me. But what people don’t get is that brain disorders like bipolar don’t discriminate. Mental illness is an equal opportunity disease. It can strike anyone, anywhere, and at any time.

I remember having an interesting conversation with an intake nurse at NIH a few years ago. She was screening me for a clinical trial with bipolar patients. I really wanted to participate in this trial because I wanted one on one care from NIH specialists. I also thought it would be good to see if a new treatment regimen would work for me. The nurse started asking about my episodes and how my behavior changed. “Do you binge on alcohol/drugs? Do you spend a lot of money? Are you impulsive? How long do typically you stay awake? Have you gotten tattoos? Do you dress differently?”…

The questions got more and more embarrassing and hit too close to home. I firmly told her that I was a Muslim and so some of those things couldn’t apply to me. I was wrong of course, I was just too ashamed to admit what I had done to a stranger. I couldn’t admit it to myself really. She corrected me saying, “That’s what mania is. If you haven’t done these things, not only is your diagnosis wrong, but you also don’t qualify for the study. Bipolar doesn’t care what religion you are.”

Needless to say I felt a bit sheepish after that. It bothered me that I had tried to mask my illness with my faith practice. I’m not sure why I did that. I knew what she was saying was true, I just hadn’t wanted to acknowledge the toll bipolar disorder had taken on my life. After talking with the nurse, I started looking at my diagnosis differently. I no longer wanted to shy away from what happened to me during an episode, because I knew I was sick. I’ve since decided to forgive myself for my past, and hopefully over time, the people around me will forgive me too.

July 31, 2016 0

Inspiration from Struggle (On being suicidal & surviving)

I told him I had no intention of sharing this story. The person who inadvertently helped save my life one night. So far, I’ve told him and no one else. I don’t like talking about this subject. But I know that it’s necessary in order to help people understand the struggle of mental illness. I’m talking about this incident both to show how humans can help one another by sharing their experiences, and to highlight suicidality.

To begin, I mentioned in another post that I mostly feel suicidal when I’m in a mixed bipolar state. A mixed state is when you are manic and depressed at the same time. Suicidality usually rears it’s ugly head during those episodes. I would estimate that I have about 2 mixed episodes per year. One night in February, I was feeling extremely low. I was totally empty and my soul felt such a void that I couldn’t stand it anymore. I thought my children would be better off without me. I actually thought they didn’t need me in their lives, and that I was like a cancer to them. It’s crazy, right? But that’s what this type of episode does to you. It clouds your thinking and makes you almost delusional.

That night I had decided that it was time for me to stop living. It wasn’t a conscious or rational thought. I just knew my time on earth was finished. I planned to jump out of my bedroom window. Even that wasn’t a full thought out thing. I just had a sense that I would take a leap at some point that night. It was over, I thought. I can’t really explain it. Anyway, I happened to have my laptop open on my bed. I remember saying my goodbye’s in my heart and silently deciding it was time. When I turned over, I glanced at my laptop screen for some reason. I saw a post about someone in prison who I had been writing to and supporting. The woman who wrote the post said that for those of us waiting for justice for the man, we had only been following his story for about 2 years; while he had been waiting for 17. In other words, we should be patient. This hit me really profoundly. I couldn’t reconcile how this person had been going through his ordeal for 17 years, yet I had only been having problems for a few years. If he hadn’t given up, how could I? At that point, I knew I couldn’t go through with my plan. It just didn’t make sense.

This was the first time something like this happened. Other times I’ve been suicidal, I went to the hospital and the doctors had to help me recover. This time, the problem resolved on it’s own after being reminded of someone else’s issues. It happened again recently, as I’ve blogged about. I don’t quite understand how. But it’s like that with mental illness. Sometimes things work out without much intervention and others, you need help from doctors and other professionals to get better. It just depends. I’m happy for how things ended up that night, and I’m happy I decided to give life another shot. My kids definitely aren’t better off without me. I know that now. Nor is my family. I’m grateful to Allah to be thinking clearly.

July 31, 2016 0