Alert: psyche and blood pressure meds and chronic kidney disease

I have found out in the past year that I have chronic kidney disease. My levels have been pretty much constant since 2003. The nephrologist has told me that years of lithium use may explain the CKD that I now have. The good news is that creatinine levels and eGFR levels have not progressed that dramatically since 2003. I have been on clozapine since 2008.

I have also found out yesterday from the nephrologist that low blood pressure can be as damaging to the kidneys as high blood pressure. My PCP never mentioned that and never caught it that my levels were too low when I brought in a journal of my blood pressure levels from the last year plus earlier in March 2023.

This serves as an alert to all my friends taking psyche meds and other meds out there. Please double check with your psyche doctor and your PCP about your psyche med impacts and their side effects and other meds (like high blood pressure meds) and their side effects. I would hope this information would be taken into account when we are prescribed certain meds we need for mental and other health stability. Does not make sense that we would have to take a hit on our physical health just to get the right psyche meds.

The more information we can gather the more we can make an informed choice about our whole health. It appears that whole health requires we look at all meds we are taking and be sure side effects are kept to a minimum.

Please keep informed! Please keep well!

Feeling Guilty, Feeling Inadequate

My elderly Mom (a Senior) has recently been in the hospital for several days. She has had a close friend/comrade staying with her during the night in the ER and then each night she was in a hospital room.

If this were to happen again and this comrade were not available, I would have a hard time sleeping in the ER and sleeping in the chair by the bedside once my Mom moved into a room.

For my own health, I need to be in bed by 10:00pm and up around 9:00/10:00am. If my Mom were to be readmitted to the hospital, I would need to put my own health first which means taking meds at regular hours and getting a very full night’s sleep.

I feel guilty and inadequate about not being able to care for her as I would prefer. But like the saying goes on the airplane safety drill, put your oxygen on yourself first and then others.

I know the right thing is to accept what I can do for my Mom and maintain my health. It is just that my wishes are that I could be with her round-the-clock if needed.

Irony or Contradiction – Med Impacts throughout the Day?

For many of us with mental illness, psyche meds are part of the package for movement forward from illness into remission. What I am wondering about today is why my anxiety is the worst when I first wake up for that first hour or two of the day?

The main psyche med I take is Clozapine. The other two are Clonazepam and Oxcarbazepine. I typically take an extended dose of the Clozapine at night before bed around 9:00pm or 9:30pm with a smaller dose of Clonazepam and Oxcarbazepine.

Logically I would think that the time I would feel most vulnerable is the time that is the furthest away from when I last took the Clozapine. In other words, after 24 hours I would expect the medicinal effects of the Clozapine to begin to wear off. What I would expect is that my symptoms would be worse (not better) right before bed at around 9:30pm since that is about 24 hours since my last Clozapine dose.

On the other hand what happens is that my anxiety peaks about 12 hours (not 24 hours) after I take the Clozapine. This peak is at about 9:30am the following day. On the morning after the 9:30pm dose at 9:30am or thereabouts is when I experience the most anxiety.

To complicate matters, the time before bed from 4pm to 9:30pm is usually the least anxiety ridden part of my day. How does that make sense if it is almost 24 hours (not 12hours) since my evening dose of Clozapine? Is it just the routine at that part of the day that calms me?

Overall, these time-frames don’t make sense to me. Again, I would have thought that 24 hours after my last Clozapine dosage would be my most vulnerable time? Not my most anxiety-free time? I also would have expected 12 hours since the last med dose to be a stable time? Not when my morning anxiety peaks?

Does anyone else experience a disconnect between when they take their meds and when symptoms are at their best?

Various Interventions for Stress?

Plans to take my daughter to college next week are leaving me stressed with a capital S. I have scheduled an extra appointment with my therapist for tomorrow. I have gone up a little on my Clozapine. Perhaps not enough…? Everything feels very stressful. Making plans for wisdom teeth removal in December. Making plans to board the dog. Consider changing meds – this will be held off until September. Making sure my daughter is OK during move-in. Friends and family say this stress is normal when sending a child off to college. OK so it’s normal. Why do I feel so un-normal?

I have been taught not to be afraid to ask for what you need….. I am asking now for your understanding and support. The more “yeah it’s normal” s I get the better I think I will feel. Brother can you spare a dime? Or a least a word of support that this too will pass?

Do you stockpile meds?

In the US under my insurance you can usually get meds refilled about 3 days earlier than the full month that they are covered. This allows me to create a med stockpile month upon month when those three days earlier to pickup are multiplied times twelve over the course of the year. I also tend to keep at an old prescription dosage amount even if that dosage has been changed/reduced. To explain, say my doctor originally prescribed me with 500 mg of Clozapine and then over time I reduced to 350 mg. My doctor keeps the prescription at the higher level in case I need to go back up.

The result? I tend to stockpile meds which drives my husband crazy. But for me it means being ready for a sudden trip out of town or having meds in place when I am on summer vacation. My insurance does not do vacation overrides. Not sure why. So if I need meds filled during vacation I need to use GoodRX coupons the week prior to leaving town. GoodRX allows you to fill prescriptions with a discount and they do not care whether your insurance says it’s time to fill or not. It used to be that my pharmacy would do a vacation override but I think the problem is with my current insurance.

I have also been told that you can ask your doctor to send the prescription to a pharmacy out of town (where you’ll be vacationing) and that that pharmacy will fill the prescription. But I have also been told that that fill is up to the pharmacist’s discretion. Don’t want to wait until I am out of town and have run out of meds for that to happen!

So, what do you to to be sure you have meds before vacation or before traveling in general? Do you have a stockpile like me? Does your insurance do vacation overrides? I have been told that even if you can get a vacation override it is only for once in the calendar year. Are you blessed to have universal healthcare that doesn’t penalize you for filling early? Or do you use something like GoodRX to get a prescription fill a little early before you have to leave for out of town and use that coupon for filling the med outside of insurance approval windows?

What Does It Look Like to Be in Mental Illness Maintenance Mode?

This is just a bit of musing on being in maintenance mode with bipolar illness. At times, I have called this maintenance mode being in mental illness remission. Due to the specifics about what is illness remission and what it is not, I am choosing today to talk about where I am in my history with bipolar illness as “maintenance.”

What does bipolar maintenance look like for me?

Being on a largely functional cocktail of meds that are monitored by a psyche professional. I adjust these meds slightly with the help of my doctor when I am going through extra stress or when stress is more manageable. I have been on the same basic meds since about 2008.
Seeing that psycho-pharmacologist about every three months with monthly trips to the lab for bloodwork. It is important to me to be honest with my doctor and to have the type of relationship where I can work with him to adjust med levels when needed.
Seeing the therapist about every 2 to 8 weeks. Every two weeks is if I am in a rough patch. Every 8 weeks if all is progressing well. Back in 2008, this was weekly. Mostly now it’s every 4 to 8 weeks.
Not having to be admitted to the hospital for 2 plus years. For me this has been since fall 2008. I have been informed that not being hospitalized for a period of time, in and of itself, does not qualify as remission. But the stats seem important to me to include as at least one barometer of remission and/or maintenance.
Having several activities like blogging, care of pets, walking or yoga routines that are by and large fulfilling if not enjoyable. I find that with the anxiety and depression that I experience with bipolar illness, my activities are sometimes fulfilling and sometimes not. Getting them done is what I count most. There is “enjoyment” or “satisfaction” in getting them done even if at the time, the activities themselves are not particularly “joyous.”
Being able to manage day to day activities in the household. These for me include being supportive to my teen-age daughter, keeping my relationship with my husband current and vibrant, running the household, going to the grocery on a regular basis, getting a healthy dinner on the table each night, doing basic laundry and clean-up, caring for a new puppy. This does not require me to hold down a job which has been a struggle for me since 2005 or so or perhaps earlier.
Seeking out regular contact with friends and contacts who are supportive of bipolar illness. I have had a neighbor who is close to me move about an hour away from where I live, so I could make some improvements in this area. We used to talk openly about stress and anxiety on regular walks. It would be great to resume this activity virtually if possible. Blogging also does help create a sense of community support. I have been blogging regularly for a couple of years and this is very fulfilling — both the reading and the writing of various posts.
Doing something tangible to reduce stigma about mental illness. Instead of being the victim of mental illness stigma, I have found it empowering to write about stigma in my journaling and in my blogging. It is important to get out in front of the stigma and try to tackle it and talk about it before it becomes a big deal with big deal consequences. I have found it difficult to address stigma, but I also have found that talking about it and educating people who have no prior exposure to mental illness is important. I have just written a series of blogs about mental illness stigma and working as a project manager. Hopefully that perspective when shared may mean people who have no prior connection with mental illness can at least read about what it’s like to experience that stigma.
Talking and educating people who have no connection to mental illness seems to be at the top of the list for me for stigma reduction. Stigma reduction does not happen immediately or overnight, more like a small, small drip into a large, large pond. Very small change but change nonetheless. Also to note, there is real danger of preaching to the choir about mental illness stigma. Most people who might follow my blog probably already think stigma is an issue. In stigma reduction, it is important to find ways of reaching people who are not yet educated on mental illness and its challenges.
Finally, being in maintenance mode for me means being able to be kind to myself. This means forgiving myself for mistakes no matter how large or small. This means giving myself credit for accomplishments achieved no matter how small they may seem – like going grocery shopping for healthy food that day. This also means not comparing myself to others in a way that makes me feel “less than” or “more than.” Maintenance mode means being willing to accept constructive criticism from my support team even when that criticism is difficult to hear. It also means standing up for myself when the criticism may not be “spot on.”

Does anyone else care to share what mental illness maintenance might look like to them?

Story of Bipolar Tolerance in the Workplace

These next several posts will be dedicated to stories about how my mental illness was accepted or not by my various employers over the years. This first story is about my first job out of college as a paralegal for a law office in a major New England city. In the post below, I compare paralegal work and project management work.

When I started working as a paralegal, the Americans with Disabilities Act had not yet been passed. This was 1986. When I signed up to work for this law firm, I was asked to fill out a questionnaire. As memory serves, one of the questions asked about whether I had a mental illness. This was before it was illegal to ask this question. The ADA did not get passed until 1990.

At the time in 1986, I opted not to be truthful in the questionnaire. I felt it was my right and my knowledge that the employer could not or should not access. This created the start of the process of always wondering whether it was good to declare my bipolar illness or not with an employer.

During the two years that I was a paralegal at this law firm, I exhausted my sick leave due to the bipolar diagnosis. I was still in process of getting the right combination of lithium and Tegretol together. I was also adjusting to taking meds on a regular basis. As many may know often it takes a year or two before you can accept your illness and that you will need to stay on meds likely indefinitely.

I don’t recall whether I was put on short-term disability during this time or not. But there was never talk of letting me go or firing me because of the bipolar illness or because of exceeding the allotted sick time for my station at that law firm.

In general, the lack of a negative reaction to my being out ill was a positive outcome in the long-run. Today I consider this “tolerance” of my mental health needs to be a very positive outcome with an employer. I had not yet been certified as a project manager – that would come later in 2002. All in all and in retrospect, I found that working as a paralegal and having a mental illness were a combination that was somewhat manageable for me and for the employer.

Years later in the 2000s I found that working as a project manager and having a mental illness was not a manageable combination at all. The stigma associated with the mental illness particularly in the project management workspace was just too great. This stigma has been discussed at various of my former blogposts.

What appears to be a deciding factor between “tolerance” and “intolerance” of the mental health condition is whether the specific job is in a supporting role rather than in a leadership role. As long as I was a paralegal and providing support to a team of attorneys, the idea of having some sort of mental health complications was “acceptable.” However, a project management role is/was a leadership role and therefore creates/created less “accepted” or “acceptable” responses proffered by the project management organization in the project/program management workplace. I wonder if I had been an attorney at the same law firm whether the same level of “tolerance” would have been extended to me. Or, if as an attorney I would have been in a leadership role and, therefore, the complications of mental illness would have also been less “accepted” and “acceptable.”

Just how delicate things are

I accidentally took my morning meds two or three hours later than usual yesterday. This sent me into an anxiety tailspin. I had no idea my reaction to my meds would be so time sensitive — that a two or three hour delay would have dire consequences. Well it did. I went into a full blown panic attack and in the process extended my anxiety to my lovely 17 year old daughter. This is so totally not fair to her. BIG lesson learned for me is that schedule DOES MATTER when taking psych meds. Also BIG lesson learned is that I need to forgive myself and ask for apologies from my daughter for extending anxiety toward her instead of the love and support she deserves.

Have you ever forgotten to take meds on time and suffered the consequences? Did you have to forgive your self in the process? And ask others to forgive you too?

My Sojourn through Bipolar Illness – Clothing then and now (reposted)

As a note before this repost, I have successfully maneuvered getting 10 to 13 pounds off (and stayed off) in the last several months. This has largely been due to introducing daily exercise into my day – walking and/or yoga. This is the first time I have been able to stick to such a routine in 17 years. Oddly, my evening snacking has not made the weight gain disappear but it does tell me that I could get another 7 to 10 pounds off if I could just stop the snacking / stress eating in the evening after dinner. The repost is below:

I have continued to have some sort of fixation with clothes and clothing – not only the color in which they appear but also the “privacy” of the label. Sometimes this label is not private and is emblazoned on the back pocket of the jeans as in Calvin Klein jeans from the 1970’s or even the Levi’s name tag on that ever so timeless brand of clothing. I am unsure what this fixation on clothing entails exactly. I do know that it is tied with some body image issues that get complicated because of my need to take regular meds for my bipolar condition.

Throughout high school and college I remained a size 6 to 8 when I perhaps should have been a size ten. After meds were introduced in my life I was almost always a size 8 to 10. After bearing a child and substantially increasing my meds, I have been more a size 12 to 14. My goal at this juncture in life is to be back at that size 12. Perhaps my obsession with clothing is in parallel to my own body image issues, perhaps not.

In any case, the preoccupation with clothing seems to have something also to so with pattern recognition. If four people out of ten wear red to the office that day, I notice it. If black was worn by person A on day one and by persons B, C, D, and E, I notice it. Not that I really ever did anything with the information, it was just a layer of the type of perceptions I would have – extraneous and meaningless maybe or maybe not. Definitely with a focus on color patterns and patterning.

In my teens, I spent hours shopping for the right clothing. Today, I abhor shopping for clothes largely because I am two sizes bigger than I would like to be. The preoccupation with clothes at an early age is probably all wrapped up in image. I have very little to say in that regard today as Ego is largely drained from my daily events. I tend today to wear the same make of clothes all the time and often repeat the same outfit once a week. In fact, I do not care about clothing at all. It is a chore to buy clothes and it is a chore to pick out clothes for any given day.

While being diagnosed with an eating disorder is something I have considered as relevant to my mental health, I feel that my weight gain issues center more on body image issues and medication use. For years, I bought into the fashion magazine mindset that you were not beautiful unless you were a size 6 or size 8. For years throughout high school and college and into my twenties, I ate and exercised in order to maintain a size 6 or a size 8 figure. Often this meant running three to five miles several times a week and counting caloric intake to be about 1000 calories a day. When I became pregnant at age 38 I was about a size ten. After giving birth to my daughter, I have stayed at a size twelve if not a size fourteen. I currently have very little discipline in the food and exercise realm largely in my own view because I feel I am reacting to years of over-exercising and over-dieting.

So it is that my size in clothes has moved from a size 6 in high school to a size 14 in married life and after child-birth. This continues to be a goal of mine to return again to size 12 through a combination of exercise and food monitoring. However, it is something admittedly that until quite recently has fallen off the radar screen. Some of this frustration and back-pedaling about eating and exercise may include the fact that meds are often associated with weight gain. In my mind, I tell myself it is better to have an extra twenty pounds on while taking medicine than it is to be a at a model’s weight with little or no mental stability. This is particularly true when I start to be honest with myself that fasting from breakfast time through lunchtime is associated with mood issues since blood sugar levels are not being addressed.

What about weight gain? Anybody experiencing that?

Asking about memory issues is popular on my blog, so I thought I would start a similar discussion on weight gain.

Back in 1985 when I was diagnosed with bipolar disorder, I was prescribed a combination of lithium and tegretol. There was a five to ten pound weight gain associated with those meds. With a diligence for exercise I managed the weight implications associated with lithium without a problem. As long as I stayed on lithium off and on until about 2004 my weight seemed largely manageable.

Fast forward to 2004 after the birth of my daughter. I never got off my baby weight. Also due to the postpartum depression, I suffered additional weight gain in that I ceased to be motivated to run 4 to 5 times a week. In fact, I am doing well now to get a short walk in.

In 2008, I was prescribed clozapine / clozaril which largely became therapuetic for me but also was associated with a good bit of weight gain. To this day I am 20 to 30 pounds heavier than I want to be. I also want to be walking regularly. In addition to the meds’ impact on weight, I began to eat as a nervous eater and a stress eater. This did not help with the weight issues.

I am hopeful if I can jumpstart myself back into an exercise regime, I can begin to address the weight-gain and the stress eating. Because my daughter is pescatarian we largely eat healthily as a family but portions are too large and snacking is too much.