Category Archives: schizophrenia

If your health condition was a college major

I belong to an online journaling group through The Mighty. Unfortunately, it will be ending soon. I am going to try a different group they have that is coloring and chatting. I attended the journaling group Th night. They have a number of prompts and you write for 10 minutes.

Image people in red gowns and caps graduating college

The prompt I chose was based on this post on The Mighty https://themighty.com/2022/06/health-conditions-as-college-majors-class-schedule/
If your health condition was a college major, what would the class schedule be.

This is mine:

Major in schizoaffective disorder with minor in social anxiety

Courses:

Intro to making friends
Reality testing 101 (or do you hear what I hear?)
Psychopharmacology and the art of being a guinea pig
Assertiveness and not letting others beliefs undermine your stability
Self-care

What would your classes be?

Therapy PRN?

Image: dinosandcomics cartoon I hate leaving the house, why are you here then, well…, I have to have something to talk to my therapist about

I started seeing a new therapist when my insurance changed in January.  He started spacing our sessions further apart because I am doing well and run out of things to say.  Last month he told me he thinks I just need to see him, as needed, and to contact him if I need an appointment.

I don’t know what to think.  I am happy I am doing well but did not know I could finish, with a chronic mental health condition.  I do like checking in with someone but I have a psychiatrist and support group and people around me.

When I ask people about it they think I am unhappy and tell me to speak up, but that is not the issue.  I am unsure how I feel.  I am getting used to the idea now.

 

I also changed psychiatrist with the insurance change. But, I am having more insurance issues. He is part of a medical group that is covered but they are not recognizing him in their system. They covered the first appointment but denied the second. I filed a grievance and the psychiatrist office says it will be taken care of.  It still makes me nervous.

 

Work is going fine. I work 2 days and they hired someone to work the other 3.  I was wondering what he was doing. Work would be piled up for me when I came in.  I just found out he has not been working there for over a month  I feel silly for not knowing, but no one told me.

 

Weight watchers is going fine.  I had a birthday and celebrated with some desserts.  My weight has been going up and down but at least it I have not be gained.  I am getting back at it. I got a recipe book when I signed up and have made a few recipes.  I made slow cooked oats with fruit and a hash brown and egg meal.  I have coconut milk yogurt cooking overnight.  I plugged in a blueberry muffin recipe and it is 6 pts which is okay for a treat but I have to limit to one.

 

 

New Year, New Docs and Parenting Woes

Image man lying down on therapist couch

My health insurance changed in January. My primary care is the same, but I had to get a new therapist in January. I was approved continuation of care with my psychiatrist, but that fell throug, so I had to find a new psychiatrist, too.

I saw the new psychiatrist on Thursday. Fortunately, he did not want to change my medications. I have been on this combo for years. A friend had recommended a different doctor in the practice but he was booked up so they assigned me to this one. I googled and found him but did not get much information. He seems nice. He ordered refills. Our next appointment is over the phone next month.

I like my new therapist. He makes me think. I asked him what he meant by that article on brain hemispheres and he said just that you can change your thinking at any age.

My daughter is 23 and lives with us. She graduated college last year and plans to get her teaching credential. But, she has not applied, yet. She is afraid to learn to drive and is afraid of Covid. She has a job at the library. We drive her back and forth, which is okay. She just goes to work and home and spends a lot of time in her room.

My therapist suggested we are enabling her to avoid self awareness, and how satisfying is her life if she is isolating? Another thing that is making me wonder. I don’t go out much myself and I feel content. It is not out of fear, I am just fine at home. I mentioned her at a support group and they said we are enabling by driving her and that she may stay home until in her 30s. I don’t know what to think. She seems fine, rarely complains. We did not get along for years and we are in an okay place now.

I don’t know what we should be doing, if anything.

I have joined an art journaling group. It meets once a month. The teacher is a therapist, but it is not therapy. She just charges a donation. She brings up a subject for inspiration. This week she wanted us to bring light to Ukraine. We worked with mandalas which is a circle. I like the way mine turned out. I am not artistic but it is still enjoyable.

Image: blue and yellow circles with yellow heart and sunflower in center. Words: hope, support, power of love

I also joined an online journaling group. It disappeared and I thought they weren’t going to have it anymore, but it is back at a different time. It is enjoyable, too.

Sensory Coping Skills

Image: essential oil inhaler, sock, modeling clay, lemon heads and phone with image of bedroom with dog

My health insurance changed, so I have a new therapist. I have seen him twice, so far. I am doing well, so we may move to monthly appointments.

He went over some sensory and other coping skills and assigned me to get items. I have a post “Coping With Schizoaffective Disorder” https://lorib434.wordpress.com/2017/03/20/coping-with-schizoaffective-disorder/ These are additional tools

The first is a calming essential oil, like lavender. I don’t like that so I got chamomile and an inhaler. I was skeptical but I enjoy the scent.

The next was a photo of a safe scene.it could be a place in nature, whatever you feel is safe. I took a picture of my bedroom with my dog. That is my safe place.

Music. Something relaxing like rainfall or ocean waves. I found some nature sounds on YouTube.

Fabric, an item that is soft to hold. I bought a fuzzy sock at the dollar store.

Lemon drops or sour candy

Some other things he recommended:

Box breathing (inhale for 4 seconds, hold for 4 seconds, exhale fir 4 seconds).

Exercise

Watch a funny show

Take a shower

Throwing something safe, like modeling clay

I told him I did not think I would do the throwing, but he encouraged me to try them all.  I bought clay but have not tried throwing it yet.

 

When I told him I have trouble getting in the shower. I don’t like to get cold. He asked if anything had happened in a bathroom or shower. I did not go into details but told him yes, when I was 8 years old. He told me to have all the coping tools and journal from the perspective of an 8 year old. I don’t know how to do that, so I journaled what I remember. I think the tools helped me stay calm. I don’t believe that has to do with me having trouble with showers, though.

Insurance Woes

Image: Skeleton with phone, on hold

My health insurance changed at the beginning of this year. I have been dealing with the insurance company. Monday it was impossible to get through. Tuesday I was able to chat and call and get most questions answered, I thought. My primary care physician is the same and she can refer me to any specialists. I see an endocrinologist, a sleep disorder pulmonologist, and a specialist dentist who monitors an oral appliance I wear for sleep apnea. But, I need a new psychiatrist and therapist.

I filled out a form for continuation of care with my current psychiatrist hoping I could at least get my meds refilled before I switch. Up until Monday, I thought he was covered, but he isn’t in my IPA, whatever that is, I thought it was a beer. I found a psychologist and had an appointment on Wednesday. He suggested calling my insurance to ask about a psychiatrist and to double check, he, the psychologist, is covered.

The problem is, this insurance covers medical and behavioral health, but they are different departments and don’t seem to communicate. The first person I called said anyone I see has to be in the medical group, which limits me to 4 psychiatrists to choose from and does not include the psychologist. Then, I contacted behavioral health who said the psychologist is covered, it says in network. I was getting conflicting info so I texted and it took all day but I got confirmation that behavioral health is not required to be in the medical group and does not need referrals but medical care does. I screen shot the text in case there are problems.

So, I looked at the list of psychiatrists and called one who seems to have a lot of experience. I found out she is the medical director and I will be treated by a psychiatric nurse practitioner. I am a little uneasy since I have a complex disorder ( schizoaffective disorder). I am stable now and just need medication management. I made an appointment but checked out some of the other psychiatrists. I found another that sounds good that I will call Monday. I am not sure if it will be the same.

Also, I have been taking a medication called modafinil for excessive daytime sleepiness due to sleep apnea even with the appliance. The insurance rejected the order. my dr is trying to get it for me. I am completely out and so so sleepy.

The therapy appointment went well. I told him I feel shame about past mistakes and have trouble forgiving myself. He asked if I would forgive someone else and I said yes. Why the different standard? I first said “I don’t know “ which I learned he does not accept as an answer, so I reflected on it and decided I should be able to forgive myself, but I still don’t know how. Baby steps?

Then I told him I get uneasy sometimes at work when there is a lot of noise and commotion even though I am not directly effected. Or if my husband raises his voice at home. He told me to journal when I feel uneasy. I have not had to deal with loud noises lately, but dealing with all of this insurance stuff gets me worked up. I want to drink to calm down, but I also want to stay sober. So far, sobriety is winning. I have a blood test in February and I am hoping for good results. We agreed to monthly appointments since I am stable.

Did I mention I got my hearing aids.? They work well. A little bit of trouble getting tangled in my mask. They have blue tooth capability and I have them connected to my phone. I am slowly learning how to disconnect if I want to use my phone or I hear nothing. And, I get notifications through the hearing aids. I go back to the audiologist for follow up soon. Sometimes it seems like only one is working and I don’t know if I am doing something.

Will it be too stressful?

Image: STRESS spelled out in scrabble

I have been stable for 15 years, but I have really decreased stress in my life. I find that when stress increases my symptoms can increase. I did not work for a few years after diagnosis. Then, I volunteered part time for years. I have been working part time for 6 years and I am doing well.

I found out about an open position at my work. It is higher pay, but more responsibility and full time. I put in a request to transfer and am waiting for an interview. I have no offer yet, but I am starting to worry if I am doing the right thing. (My opinion does not represent my employer). I want to ask my psychiatrist his opinion on taking on more, but he is out of town.. I emailed therapist but I don’t know if she will get back to me.

I have a delay with the hearing aids. The audiologist contacted my insurance and they said I have no coverage. That did not sound right, so I called. I have a $1000 allowance but it needs authorization from my medical group. I asked my primary care and she said she is not the one to ask, I had been referred to an ENT when they sent me to the audiologist so I don’t know if the ENT is supposed to get authorization. I am hoping I get them before the end of the year.

I am still doing TikTok videos on coping with schizoaffective disorder. Username Schizoaffective Dog Mom. I used to do live Periscopes. Few people came, but it was fun. TikTok has a live feature, but you need to have 1000 followers (I have 50). I guess it does not make sense to go live with no audience, but I am a little bummed I can’t use that feature. I have enjoyed viewing live videos.

In Sickness and In Health

Image dog on bed

I have had sinus congestion and headaches off and on for a couple of weeks.  It is finally starting to clear up.  I swear I have a barometer in my head and get headaches when it is about to rain.  We had a storm with thunder and lightening and then my head started to clear.

 

My husband and I went to San Diego for a couple of days to celebrate 25 years of marriage.  Mental health issues can be hard on relationships and I am glad we have been able to get through all of these years.  My daughter stayed home with the dog.  I don’t think she missed us but the dog did. We mostly relaxed and ate.  Everything was walking distance from where we stayed.

 

The first night we went to a restaurant, Rockin’ Baja Lobster.  We were there at happy hour.  I went way off my keto diet  and even had a few drinks.  The next day we had lunch at a Brazilian steakhouse, Fogo de Chao.  It was fancy but we just had the salad bar. It was pretty filling.  That night we went to a dueling piano bar, The Shout House.  That was a lot of fun.  They called people up on stage which would have embarrassed me.

 

Now we are home and getting back into our routine.  My mother in law is taking us out tonight and then I go back on keto.  I plan on going alcohol free until April.  I belong to some Facebook groups for moderate alcohol drinking.  I asked about any live groups and was told about one over zoom.  I went, but when I told them I drink twice a year the host was surprised and I felt like I did not belong.  My issue was, I am not sure if I want to expand on that, but I think I figured out what I want to do on my own.  I am keeping alcohol out of the house, but if we go to an event where I am not driving I am giving myself the option to drink.  With Covid there have not been many social occasions.

 

I have health insurance through my husband’s work.  They decided to change insurance companies coming in January.  Our PCPs are in network but behavioral health is different.  As far as psychiatrists, I have been on the same regimen for years so I mainly just need someone to refill my prescriptions.  But, I have so much trouble finding a therapist I click with.  I like the one I have now, but she does not take the new insurance.  I have been searching but I don’t know how to look.  I found one therapist who is great, but is retiring in 2023.  I am not sure if I want to start all over then.

 

 

 

 

Intermittent Fasting (IF) and Stigma in Plasma Donation

Image of insulin and glucagon levels over time source Digbi Health

I saw the image above of how insulin drops between meals and while fasting. While insulin is low, glucagon can burn body fat. I was intrigued. I am 10 lbs away from a healthy BMI, but still have abdominal fat. I am type 2 diabetic and asked my doctor if fasting would be safe. My glucose is pretty well controlled and I don’t have hypoglycemic episodes. She said it is fine, but recommended 12-14 hour fasts. Which is mainly cutting out the nighttime snacking and eating breakfast later.

So far, no change. My weight has been stalled for awhile. My diabetes medication was reduced in June and my biometrics went south. Glucose up, ketones down, weight up. Thankfully, that stabilized but I can’t get my weight to go down. I log my food on an app (Cronometer) but sometimes I estimate weights. I am going to have to get better at calorie counting to start losing again.

So I am gung ho on intermittent fasting. Watching Dr Fung YouTube videos. Then, I saw this study. https://pubmed.ncbi.nlm.nih.gov/34135111/
A randomized controlled trial to isolate the effects of fasting and energy restriction on weight loss and metabolic health in lean adults

All I can see is the abstract and I heard a review but this is what I got out of it. There were 3 groups. One calorie restricted, one calorie restricted (same as group 1) but alternate day Fasting and a third group with no calorie restriction. The calorie restricted groups both lost the same amount of weight but the non fasting group lost more fat.

It was a short study 4 weeks, I think, and these were lean adults. Also, they were doing longer fasts than I am. But, I don’t know what to make of it. I would have expected the fat loss to either be similar or more for the fasting group since they have lowered insulin during the fasting period. if anyone has any insights let me know in the comments. I will stay with 12-14 hr fasts and keto diet for now.

I tried donating plasma at a donation center. I tried calling ahead to ask about restrictions but they do not give that information over the phone. And, they don’t take appointments for first time donors so I had to walk in and wait. For what it was it was not too bad. First someone checked my veins, which are fine. Then I had to fill out a bunch of paperwork. Then, I watched a video on plasma donation and read through a manual for first time donors.

Then, a woman, I don’t know her title, took me to an office to go over my paperwork. She got to the medications and asked what each was for and looked them up in a huge book. I take 7 medications for various conditions. After she goes through the medications she goes over them with me.

Most were fine. I take antidepressants but as long as anxiety and depression are under control it is fine. But, I take metformin for diabetes. She said that is a temporary deferral. If I was off it for a year I could come back. I don’t know what the likelihood of me maintaining my diabetes by diet alone is, my husband is able to, so possibly. Then she got to abilify which is an antipsychotic although it is sometimes used along with an antidepressant for depression. But, I told her I take it for schizoaffective disorder. That is a permanent deferral.

Bone marrow donation has the same policy. It is not the safety of the product. They consider me a safety hazard. I have been stable for 15 years but still people are afraid of me because of a diagnosis. They should have a sign out front: schizophrenics need not apply. So, I would not have had to waste my time.

The Keto Roller Coaster

Image of roller coaster

I have been on a ketogenic diet for about 5 months to help treat type 2 diabetes. I was taking 2 medications. Metformin and Januvia. I am monitored through a program called Virta. I have a coach and a physician through Virta, it is all done virtually. There is also an online community for people on the program. It is covered by my insurance.

At the beginning of this month I had labs that my endocrinologist had ordered. The results were really good. A1C of 4.8 and fasting glucose 98. Everything else was normal, too. For some reason my endocrinologist office cancelled my appointment so I had to reschedule for August. The Virta dr said that I could try going off Januvia since my labs are so good.

So, I go off Januvia and everything goes screwy. I get ravenous at night and have to eat after dinner. I had been slowly losing, now I am gaining weight. My fasting glucose is higher than before I started keto. I test my ketones and they are low. I chatted with people in the community and they tell me to stick it out, that my body will adapt. I am not so sure. I put in a message to the Virta dr to ask for his opinion but I won’t hear until at least Monday. I did not even know if the Januvia was doing anything but I now notice a difference without it.

I rarely talk about work, but here I go. My opinions do not represent my employer.

I work in peer support in a 20 bed mental health crisis stabilization unit (CSU). I have worked in peer support at an activity center for people with mental health issues and in a residential program. The people we see are much more symptomatic than I had worked with in the past. I am available to talk and offer groups but I don’t get much interaction because people want to sleep, are too symptomatic, want to be left alone etc.

It is a new facility and peer support is a new position for my employer. I have been there about 5 months and still have not found my footing. My boss is aware of the issues of people not wanting to interact and told me to keep being available and offering groups. She is going to give me some additional duties once they are approved.

It also can be anxiety provoking when patients are loud or aggressive. I am not involved with dealing with those situations but I feel tense. I help out where I can. I like the place and what we do.

What I Have Been Up To Lately

I had therapy last week. I started seeing this therapist after the pandemic, so all my sessions have been virtual. I forget what she asked but I mentioned I remember mistakes from the past, 20, 30 years ago or more and they torment me. She wanted me to share but I am not comfortable with that. I feel such shame and they were mistakes that I feel are unforgivable. If I did not feel shame there would be something wrong. But, I don’t want to delve into them.

My father did not believe in mental health treatment even though schizophrenia, schizoaffective disorder and bipolar run in our family. When I started therapy he discouraged it saying talking about the past just makes everyone sad. I did not understand what he meant until now.

My therapist wants me to work on forgiving myself.  I have to explain to her that some of these things are best kept hidden.

 

 

I have been able to stay alcohol free after my planned intoxication in April.  My plan is sobriety until our wedding anniversary in October.  It was pretty easy to get back to it.

 

 

I posted a link to an In Our Own Voice presentation I did for NAMI, National Alliance on Mental Illness, in a different post. I have not been speaking much lately. I saw a different program by NAMI called VOICES. It is geared towards first responders. I signed up to be a speaker, but am having trouble figuring out where to start. My initial interaction with mental healthcare and police was not until I was 39, but since mental illness runs in my family that was not foreign.

My brother had a psychotic break in college at 20 (I was 15). He refused treatment and would get picked up by the police for 72 hour observational holds in the late 70s. His is a sad story. He was severely symptomatic for 6 years when he finally was placed on a different medication that he responded well to. But, he started becoming symptomatic again, paranoid, edgy, and probably needed his medication adjusted. He went to Yosemite while symptomatic and fell at a waterfall. I don’t know if it was accidental or not, but he died from the fall.

This is supposed to be a story of hope, but it is part of my story.  If I had not seen him so ill for so long I may not have accepted treatment, but I did not want to be stuck in psychosis like he was.  I think it is okay for first responders, but not sure if it will scare the general public who may be worrying about their own children.

My story is much different.  I did go in and out of psychosis for 3 years, but I have been stable since 2006.  I have not been hospitalized for 16 years.  I am married, have healthy grown children, work part time.  I still have some doubts about what was real from the past, but I can function.