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Printed from https://www.writing.com/main/books/item_id/2241998-Living-on-the-edge-of-sanity
Rated: 13+ · Book · Health · #2241998
I am a a woman married to another woman who lives in an insane world maintaining sanity
What is sanity? I'm pretty sure I crossed over that edge a few years ago, but I'm back for what it's worth. I think for people who have lived with tremendous trauma that we are always kind of living on that edge of sanity. I'm really not sure what I'm going to write here so bear with me. One of the things I want to write about is surviving the mental health system. I am not saying that the whole mental health system is bad, there is a need. Unfortunately it can become very cyclical and people can become overmedicated or over treated and I was one of those.This happened for many years while my real problems were not addressed until much later. I still take an antidepressant, but I am not on copious amounts of medication so that I that cannot possibly get healthy, which is what it was like at one point. I know that I'm going to try share with you some of the tricks I use to get through days that are hard to get through. I think that people advocating for themselves and for other community members can make a big difference in personal and social mental health and education. I want to share some of my experiences as an older married lesbian living in a community where everyone except for one other woman in our whole 194 apartment complex that I know of are straight. I think have a bit of a unique viewpoint. We live in a 55+ community. Actually at 53 I slide in because my wife is about to be 66. There a lot of young people here though, grandchildren living with grandparents. We have experienced some discrimination. I had a woman tell me I was going against God and it was so wrong. I guess we have a different God..
Another thing I deal with on a regular basis is pain. I have chronic back pain. I have a disease called Sjogrens disease that effects the connective tissue in the body and it effects the fluid in my joints as well as causing pleurisy. On top of that I have fibromyalgia. About 6 or 7 years ago I had a brain tumor removed and before that I had really bad headaches. They have tried all kinds of medication with me and had me try acupuncture. Some of these were successful but they were opiates and then the opiate crisis happened and doctors said they were no longer prescribing opiates to anybody, at least here in MN. The next solution here, medical marijuana. It was legalized here in MN and all the pain clinics were passing their severe pain patients who qualified on to medical marijuana clinics. This is great for me , it helps with the pain and the inflammation, but it costs $360 a month. Seriously, I'm on disability, I do not have large amounts of money lying around. I really do not like being in pain and feel I have spent enough of my life there, so my creative brain goes to work.
Away from craziness and pain, First I decided I was going to learn to crochet again , I only knew two stitches, but the power of google and you-tube and Pinterest totally amaze me. I have learned over 20 stitches and then set out to learn how to make and sell hats. I do live in MN after all, we need hats here. Then I crocheted and donated over 50+ hats to the homeless. I felt such a sense of accomplishment. Next I started making crochet washcloths, potholders and scrubbies and people loved them . I was really excited and surprised that people wanted to buy the things I created. My wife and I started making aromatherapy bags and I make some jewelry, When the pandemic hit, although it was a big fear of mine because I had never before used one, I learned how to use a sewing machine and have since made more than 50 patterns of masks. I was surprised by how involved I got into fabrics and picking out fabrics and the beauty in the colors and matching them. All of this led up to me setting up my own business 'Jordys Creative Jems'. It is something totally new for me. Exciting and terrifying at the same time. This stuff is all new to me. I was nurse for 25 years, and this is definitely different than nursing. Then I was sick for a long time. It's like I'm coming back into the world and this is all new information for me. Computer literacy is not my top skill, but I'm learning! Actually I think I had more confidence in my nursing skills than I did at the thought of creating my own business. Here I go, taking a leap of faith.
August 9, 2021 at 3:25pm
August 9, 2021 at 3:25pm
It's funny when I was younger, I thought I would grow up to be a great writer. I have many ideas in my head, many life-lessons learned that I want to share. I just can't seem to get them out in any order that makes sense. Partly because of my memory issues and partly those lessons learned took a great amount of time and energy and work. There are not easy answers to moving forward and I stumbled and fell flat on my face many times. There are many things that people say that in a time of crisis seem so maddening to the person in crisis, impossible even. Sometimes breathing seems impossible and then when you are in a place where you have risen above the din of what you are sure was madness the words make sense. Let me give you an example. Take one day at a time. There were times when getting through the night seemed like an impossible goal as my fears intermingled with the darkness and I was sure that I would not even make it one hour at a time. Before I was able to love myself for who I am, peoples opinions of me cut me like a knife. I would try to please everybody, being whoever they thought I should be and drowning in their disappointment when I couldn't live up to that. I did not even know who I was. I dissociated constantly. I was on a plethora of medications that caused to dissociate even more. I look back now and I want to tell people, you can do it, it gets better. I was there. I was on that precipice and I am living now. Day to day. Learning, growing, laughing, loving. That is one thing I have learned is that now that I don't have the day to day struggle to survive I laugh more, I love more fully. I find joy in the small daily things like finding new things to create for my small business. Sharing a word game with my wife, laughing over the silly words we come up with. We are both word geeks. I have eliminated toxic people from my life and have wholly invited friends and family that are part of my healing and moving forward. Peace to all of you moving forward. I have my bad days, but they don't control my life.
July 20, 2021 at 6:57pm
July 20, 2021 at 6:57pm
After having six ketamine infusions for my PTSD and for my chronic pain, I feel like I am coming at life from a more organized space in my mind and body. I set realistic expectations, knowing that it wasn't a cure all for my pain, nothing is. I came away from the experience feeling less disconnected and more able to deal with the situation at hand. My wife's disease is encompassing a lot of time and energy, making sure that we get the right care. A specialist for swallowing, a neuro-PT evaluation to get her a weighted walker to stop the falls, a movement disorder specialist to see if there is anything that can help with the tremors, which have become worse over time. a lot of people involved, but I see it as more support on her healthcare team. I feel ready to face these challenges. We have to monitor and record her symptoms and I'm doing that. I love this woman so much and I am trying to let her be as independent as possible for as long as possible. She had to stop driving and that is a big blow to her independence. I start a PSP support group tomorrow night, I hope it goes well. I also start my oral ketamine lozenges called "troches" tomorrow and they are supposed to continue with the pain control that the infusions helped with. I hope so and I'm feeling positive.
July 20, 2021 at 12:18am
July 20, 2021 at 12:18am
Surfacing is exactly how I was feeling tonight. I felt like I had suddenly taken a huge gulp of fresh air. My writing hasn't been consistent for a very long time. When I look back at old journals, I see such angst and turmoil in my younger selves writing. There was always an edge of fear and despair and moving further along in my healing helped me to create some of my poetry. I have figured out that the frantic way I wrote often had to do with how much I was dissociating and losing time. I have also come to the conclusion that one of the reasons I don't write as much is because I feel like what I have to say is so mundane. I'm beginning to find out that I can show strength and joy and kindness and frustration in my writing and it is no less acceptable than the dramatic hours of writings as a young woman.
The other thing of late that has entered my mind a couple of times or more is the fact that I just turned fifty-four years old. I was questioning my worth, than I stopped. I am a mother, a daughter, a wife, a sister, a Nana, an ex-nurse, a creator, a giver, a best friend, a dog and cat mom, a jewelry maker, one who crochets, a writer, a child of God and I am worthy.
July 9, 2021 at 10:37pm
July 9, 2021 at 10:37pm
I know that there are 5 stages of grief when you find out someone you love has a terminal illness. Denial, anger, bargaining, acceptance and depression. I also know from experience and from watching others that those stages come in no particular order and you often will go back into a stage you have already gone through. Sadness at her loss of independence is one of the things I'm feeling right now. Sadness because I miss the comedic lighthearted Mitzi, that is being replaced with a more apathetic, less understanding, more argumentative Mitzi. None of it is her fault, It is this dang disease that is causing neurodegeneration of her brain cells. Yes, I am angry too. Why, after everything we have been through in our lives together is this happening to us. Mitzi has always been sweet and sensitive and cared about others and now her mind is being taken over by this damn disease and I have to say I'm pissed. I love her and I want her to be healthy and happy and to have her prime years without having to worry about her brain and body degenerating at a rapid pace. I wouldn't wish this disease on anybody. I don't think denial is even an option, there is no denying the effect it is having on her. I know I have to be grateful for every day. I have to be realistic about the fact that other feelings come up though,
July 9, 2021 at 3:33pm
July 9, 2021 at 3:33pm
Do you know what it's like when you start out a day thinking it is going to go one way and you are totally blindsided and something else happened. My trip to the neurologist with my wife was like that. We had been told for several years now that she has a condition called essential tremor. This condition can sometimes be treated by a neuro-stimulator and we were visiting the neurologist to see if this was the case with her. We came out with a very different and debilitating diagnosis called Progressive supranuclear palsy, that eventually will be fatal. Mitzi has had issues with falling for years now and we attributed it the essential tremor. She has a had a more difficult time finding words, blurry vision, an unrelenting tremor, feeling like it's difficult to lift her legs, fatigue and a stiff neck. Individually these symptoms were brushed off by physicians as individual symptoms of aging and essential tremor. We both are alternately in shock and education mode. We think she is in the second stage of this 4 stage disease. We have found some wonderful resources and telling our friends has been met with nothing but support and love. I have a hard time thinking, I am going to lose my wife. I have to be grateful for each day we have. It is hard for her. She is fiercely independent and has to stop driving. I haven't driven in years because of my seizures and we don't have a working car right now, so I'm trying to set up medical transportation. Curepsp.org is a wonderful informative website that has online support groups for care-partners and people diagnosed with the disease and provides a lot of education. So we are on another journey together, this one may have more bumps, but I'm ready, I think.
June 30, 2021 at 3:48pm
June 30, 2021 at 3:48pm
A lot has happened since I last blogged. My business has ebbed and flowed. I went from making masks during the Covid outbreak to masks fizzling out, but still being needed by some few diehard mask fans. I then went on to making scented trivets and potholders , crochet bags, bath poufs and washcloths and "un"paper towels with my leftover fabric. I know this may seem a bore to some. Little by little my business is growing, seeing as I am the only creator, my inventory sells quickly. If I had hundreds of dollars to spend on fabrics , Oh the things I could create. My writing kind of fell by the wayside. I was dealing with a lot of chronic pain and in between my creating, I used my aromatherapy bags I made to dull the pain. Until recently. I began ketamine infusion therapy. It is unexplainable. The relief was immediate and hopefully will be long term. It is also supposed to have the wonderful effect of putting my PTSD into remission. I can tell you know, I feel like years of anxiety have melted away and I have had a weight lifted off of my shoulder that you could never even imagine. During the infusions itself, it feels like you totally disconnect from your body and a great weight is lifted from you. It is also a very detached feeling as if none of the worlds troubles could touch you because you are separate from from all that. It's hard to explain, but I feel very connected to my wife and my friend that brought to my infusion. The fact that I was able to be is such such an open and vulnerable state and they just loved me through it really helped. I feel more calm and at peace than I have in a long time.
April 25, 2021 at 11:14pm
April 25, 2021 at 11:14pm
Slow but Steady wins the race? I think I might have won more races if the saying had gone fast and furiously, with an occasional break for a breath, wins the race. It never feels like there is a completely level serene path that I am walking. I am always learning or struggling to learn something new. I am always trying to think creatively and be creative with my yarns and fabric and handmade . Sometimes it is just exhausting how fast my mind seems so to go on a daily basis. Right now I am planning a big craft show for June with a friend of mine in my building and about 16 other residents. We are doing the marketing and advertising and organization and set up. At the same time I am trying to set up a online website which is not as easy as it looks., especially if you are not up to date on all of the computer lingo and all of the website and branding and marketing apps. I know nursing and geriatrics and hospice and healthcare and I'm learning all about this new stuff. Sometimes I'm pretty sure my head is going to explode with information. Also living in MN, things here have been pretty chaotic. Derek Chauvin was convicted for George Floyds death, while Dontae Wright, another young black man was shot by a police officer in the middle of the trial. You could feel the conflict in the air, like electricity crackling in the air. So much going on!! I'll write more later.
March 17, 2021 at 4:22pm
March 17, 2021 at 4:22pm

Once again it's been awhile since I've written. I've been busy, busy, busy. I mentioned that I was starting my own business "Jordys Creative Jems", Actually, it's just a Facebook business page right now but I'm learning new ways to manage and keep it up. I also, along with my good friend Jean am hosting a craft show June 5th and I'm very excited about that. You would be amazed at the skills some of the older women have making jewelry, crocheting, making candles, baking like nobodies business. I also found out some great news. The company that owns the complex I live in is giving away $5000 scholarships to older residents who want to go back to school . I am applying for them to pay for the refresher course I need to get my nursing license back. It will cost just under $5000 for everything, the books, the course, a new stethoscope and uniforms. It is really something to look forward. We are also starting a community newsletter where I live and I along with Jean have been asked to help with that so that will be a fun project as well.. Anybody who has started something like that, let me know.
March 5, 2021 at 3:46pm
March 5, 2021 at 3:46pm
A better explanation of how I felt was like I hit a brick wall. A freezing cold brick wall, as temperatures plummeted and the sun did not show itself for days at a time. I just sunk in to a depression. I couldn't keep my pain under control, which is why like usual I am switching to my next subject. Chronic pain and the way that medical marijuana is kept out of the hands of those whom it is prescribed for. I have Sjogrens disease, which is a lot to explain but along with fibromyalgia and PTSD I qualify for the medical marijuana program in my state of MN. They used to have me on a lot of opioids and I requested medical marijuana. It has none of the same side effects as well as being a plant that has shown it has anti-cancer properties and other benefits. One medication for both anxiety and pain. So after paying $200 to the doctor and $50 to the state for a card , We travel to our local pot pharmacy (ok, medical marijuana dispensary) and find out that for what they recommend it will cost us over $400 a month. My wife and are on disability, we pay $1319 for rent. We don't have an extra $400 a month. We have researched the stated where it is legal and the vapes there, for twice as much its about $20 less. It's on the ballot in MN. It is not right they that pass a bill, stop giving people anything for pain and then charge so much that there is no possible way that anyone except for those with money can take advantage of the program. I's wrong. At age 53 I have a much different view than I did in my twenties and thirties, I really wasn't pro marijuana until my forties. That is my spiel for today. I'm past my brick wall, I have to get started on my small business again. I think I'm going to have to lower the prices on my masks, but that's ok. My pain is a little better. I have to get some exercise. These last couple of days have been really nice and next week it is supposed to be in the 50's and 60's. For anyone from the Midwest know that is really warm!
February 2, 2021 at 9:47pm
February 2, 2021 at 9:47pm
I'm trying to start my own business. I've tackled my fear of the sewing machine and have learned how to sew masks and have had quite a few orders for the ones I've made. I really learned to love picking out and matching different kinds of fabrics. I also have enjoyed learning how to crochet different patterns for hats, washcloths and even shawls. I made a lap blanket, crochet scrubbies and aromatherapy bags. It is really fulfilling knowing people want to purchase products that I make from scratch. The creative part I am really happy with. I have begun making jewelry again as well. The business part does not come as easily. I tried to take a basic computer class online. The first class was ok, it was just the introduction and the instructor said all that we would need to know for the class is how to use the browser. I was good with that. Then the second class and I was lost 20 minutes in, as the professor went on and on about syntax and code and I really have no idea what he was talking about. I simply want to know the best way to list and market my products, have a simple website to sell my products and the easiest way to do that. I went to nursing school in 1986 and in all of my years of nursing we did things the old fashioned way. Pen and paper. All of our charting, everything was done by hand. I want to learn how to do things on the computer and I am amazed all the time by what you can do with the computer and the phone. The worldwide web sure does have a lot of possibilities. It may seem crazy trying to start a small business at age 53. I am open to possibilities. I am really lucky because my wife is really supportive and tells me that I can do anything that I can put my mind to. So putting my mind to it is what I'm doing and putting my energy into trying to create the best small business I can.
January 30, 2021 at 9:03pm
January 30, 2021 at 9:03pm

The idea of writing, the desire to write and the fear of writing have all been filling my brain the last few days. I want to write what I'm going through with my chronic pain and how I get through it. How I live with PTSD. How I live in a world where there is just so much pain and how I find joy. I compare my writing so much. Especially since I'm just coming back to it after my brain is finally healing after surgery. It has been seven years. Like I've spoke about in an earlier blog, I think the mental health system and the doctor and hospital that I saw in particular for over 12 years really did some damage with all of the ECT. For those unfamiliar with ECT, it is electroconvulsive therapy. It used to be called shock treatments and was seen in the ever popular One Flew Over the Cuckoos Nest being given to the patient. In that movie you see the patient awake while the doctor induces a grand mal seizure. That is not how they are done now. You are given anesthesia and muscle relaxants and then a seizure is induced either on one side or both sides of your brain. Your body barely moves, you are asleep so you don't remember. It also causes memory loss. They really are not sure of the mechanism of action and why it works for depression. After having approximately 200 of them over a twelve year period, I have major memory issues . It was after all of that when I was diagnosed with and had my brain tumor removed and the subsequent infection. Even more memory issues. Thank God I finally found a great therapist who told me I wasn't crazy. I saw her for 8 years. I got out of the system that was keeping me down but I am still a little afraid to fly. Words used to just tumble out of me. I remember in my 20's I would go to this all night coffee shop in Minneapolis where coffee was cheap and writers like me spent many nights and early mornings mornings furiously scribbling into our notebooks. I have boxes of old journals. A lot of them are very disorganized thoughts from when I was overmedicated. Maybe I just need to be okay with how I am writing right now. I have a lot to say but maybe it does not have to be in any particular order. All of my struggles that have made writing difficult are also reasons that writing has always been an essential part of me. Putting things down on paper was sometimes the only way I was able to get through some pretty hard stuff. Nighttime has always been really hard for me and my writing has been a friend to me when my fear of the dark and all that comes with it.
January 23, 2021 at 3:41am
January 23, 2021 at 3:41am
Seriously, if they gave out medals to for endurance and strength, my wife would certainly be first to receive one. Since last month, she has fallen 4 times. First she bruised her right side (lung, kidney, ribs) after sliding down the icy stairs outside. Her, being as stoic as she is, did not tell me until she was in the emergency room. The second time she smacked her head on the pavement, slipping on black ice in the parking lot. We spent the evening until about midnight last night in the ER making sure that was ok. They gave us the all good, along with directions for Mitzi to be more careful and to stop falling. Gee, why didn't we think of that? All Mitz has to say is "See, I told you I had a hard head". A little history. She grew up on a farm in rural MN with eleven brothers and sisters and she was the second oldest and the oldest girl. You just did not complain when things hurt. She is one tough cookie. Even when we first met seventeen years ago, she had smile lines around her deep blue eyes. You could tell that she had smiled a lot but also that she had weathered a lot as well. She was 48 years old, quick to laughter, an animal lover, an avid listener, compassionate, funny smart. She had dealt with a lot in her life and has at this time 22 years of sobriety. She loved fixing cars and listening to music, going to hear me sing at karaoke nights at our local GLBT bar when it was here. She loved to read.
Now, she will be 66 on Friday. She had cataract surgery a year ago and her sight has still not been the same. Her face has many more wrinkles, but her smile lines are the same. Her blue eyes are just as beautiful. She has inherited what is called Essential Tremor from her dad. If you saw her, you might think she has Parkinson's disease by the way her hands and head tremble. It is really frustrating for her, she spills food and fluids and has a hard time using her phone. It also affects her gait, which is why she might be falling so much. There is a procedure at the Mayo Clinic which is ninety plus percent effective at eliminating essential tremor by going in and using laser to effectively stop what is causing the essential tremor. A friend of ours tried tried to start a GO FUND ME page to raise the money to go the Mayo to get that last year but we were unsuccessful. If at first you don't succeed....
January 20, 2021 at 10:05pm
January 20, 2021 at 10:05pm
I know I have written about the sanity that I have barely held on to at times , well.... I guess I should have figured this out a long time ago but holding onto sanity in an insane world may just be a futile effort. Maybe it just doing the best you can with what you have at the time. In that I think I've excelled! This week was insane simply because I had to deal with a bunch of teenagers. My sons are 38 and 31, so I have made it a habit not to deal with teenagers for a long time. My neighbor went out of town and let her granddaughters friends have the key to take the dog out twice a day. I got a phone call from a neighbor at midnight. She knew that I was watching this friends apartment and she saw some suspicious behavior. So I, all 4 foot ten inches of me, in my penguin pajama pants and grey sweatshirt, sighed and went to bust the kids at whatever they were doing. It was definitely not walking the dog. I walked in and they all looked a bit surprised. I asked them what was going on, even though the answer was obvious and the smell of pot filled the air and a bottle of dark booze sat on the counter and they all held glasses partially filled. We were being quiet was one on the excuses, your not my mom was muttered a couple times as I hustled them out of the apt. They apparently were oblivious as to why I was making them leave. I was shaking my head and wondering teenagers are more stupid these days, do they really not have any respect for adults. Do they really think there are no consequences to their behavior. Are there. I don't know. I grew in a really screwed up family. I know the consequences. I think there used be lines that kids didn't cross and those lines seem to be disappearing.
Of course there to be lines that adults did not cross either, like at the capitol. Seriously, who thinks that attacking capitol police and security cards and harming other people because you disagree with the way the vote went is ok. Who thinks that attacking people, police, civillian, people who you disagree in a violent manner is ever ok. Violence breeds violence . History repeats itself. There are always going to be two sides. I can agree to disagree.
January 17, 2021 at 11:29am
January 17, 2021 at 11:29am
I decided in todays entry that I would explain my descent into and rise from insanity briefly so that people can explain my title a little bit. Although I do think that the current term 'sanity' is a bit overrated. It is defined so differently so by so many different people. My descent began when I charged and put my stepdad in prison for years of sexual assault. My family abandoned and disbelieved me and took his side. I had clear PTSD symptoms, flashbacks, nightmares, what they know now were dissociative episodes. I was fearful, anxious and depressed. The doctor at the hospital I was in told me that either I agree to electroconvulsive therapy (shock treatments) or she was going to commit me to the local state hospital. I had no fight in me, I agreed. There began a long journey in and out of the mental health system. In a 12 year period, even after being diagnosed with DID, dissociative identity disorder, from my trauma. one Doctor did over 200 ECT treatments. During that time they also had me on very high amounts of benzodiazepines. Clonazepam. A drug that increased my dissociation and also was a seizure medication. So when they did do ECT they had to increase the strength of the charge. Let me say I think they did more harm than good. I don't think they knew haw to deal with trauma victims and DID is a rare diagnosis. I later found a therapist who specifically worked with DID and trauma and GLBT clients for 8 years and I am more well now than I have been in years.
Let me explain a little bit about DID, it also used to be called Multiple Personality Disorder. The first thing I thought of when they told me was "I am not Sybil". Not exactly an accurate portrait. I fought the diagnosis for a while, until it made so much sense and explained so much in my life. MY gaps in memory, people coming up and talking like they knew me and not knowing who they were, people calling me by different names. having things in my home I don't remember buying, clothes I don't buying or that I are even something I would wear. My therapist helped me to get to know the other parts of me (alters) and how to work together as a system to face this big bad world. You see when you have been traumatized from an early age your mind cannot cope with that. Being the strong, brilliant little human you are, you construct a part of yourself that can deal with it. A part of you that can survive the fact that a trusted individual has crossed a line that should never be crossed. As more abuse happens and as you grow older more altars are constructed to deal with the traumas as they continue to occur. It's the natural fight or flight response. as you get older this is how your fight and flight wants to deal with any crisis. Not healthy.
My system now works as a team. My wife is wonderful and supportive. Yes I'm on an anti depressant but I haven't been in the hospital in 12 years. Actually when my wife and I met 17 years ago was when I was seeing what she refers to as the "Shock Doc". He is the one who who do ECT at the drop of the hat and really screwed up my head with the 200 ECT treatments. My memory is really screwed up because of them and there is a lot of time there that I don't remember. Also, with my dissociation and a brain surgery seven years ago memories are just coming back about the last few years. My writing voice and ability to put words together. I have always loved writing. Now I have a love of crafting as well. If this this blog seems scattered, my mind is a bit scattered as well still, but I am making my way back!

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