The elephant on the arm

I love elephants. In my opinion, they should be called elovephants. These giant creatures are so amazing. I mean, how can you keep scrolling if a reel pops up showing a baby elephant learning how to elephant; trying to get itself out of a mud bath? Or, how about a video with a guy who had been working in human prosthetics who decides to venture out to create prostheses for animals AND does it for an elephant!!! 

Elephants have been known for not forgetting. A strong memory helps them survive. They are also highly intelligent, emotional, and social animals. Because of the observations of elephant behavior, they have become a symbol for mental health. They are known to experience joy and are playful. They also recognize emotional behaviors and offer comfort to those in need. Sadly, they also suffer from things like depression, grief, anxiety, and even PTSD. These experiences increase when placed in zoos or when used for entertainment in circuses and festivals. It is heartbreaking.

So, what does this have to do with the elephant on my arm? It's quite a tale.

About nine years ago, my psychiatrist of many years decided to retire. I knew this wasn't great, but little did I know just how bad things would get.

The person I started to see for my medication needs was a psychiatric nurse practitioner. I heard she was known for using the least amount of drugs possible to help her patients. At this point, I was on very few meds and wanted to keep it that way. I scheduled my first appointment and away we went. Shawn came with me to appointments because I felt it was helpful to have his point-of-view on my behaviors. The very first appointment should have been a bit of a red flag. She was technology averse, she had no computer so the thumb drive I brought with my records from my previous psychiatrist was of no use. She asked a bunch of questions to do an assessment. Next thing I know I'm being diagnosed as bipolar and being put on lithium in combination with the other meds I was taking. So, this brought me up to 4 psych meds.

Now, my first major depressive episode was when I was 28. That was 12 years before I started going to her. I had three psychiatrists in that time. The first doctor was when I lived in Cleveland. Then I found someone when I moved to Colorado. I wasn't with her long before changing to the guy who retired on me. None of these three ever brought up bipolar, EVER!

But, I needed help. Shawn and I both were like, okay, this is different, but she did her assessment, so what do we know. After a few months of taking lithium and changing other meds, she suggests electroconvulsive therapy (ECT). Well, shit. Things got really serious, really fast. I mean, the first image that comes to mind is Jack Nicholson's character R.P. McMurphy in One Flew Over the Cuckoo's Nest. Rest easy, my friends, it is not like that.

We went for a consult at the clinic where I would end up going. I went through assessments and tests. The idea was this could reboot my brain in a sense. It could help improve the efficacy of the drugs. The expectation was about 6-8 weeks of treatments, starting with 3 times a week and then reducing the number based on what progress was being made. My first treatment was April 18, 2016. My final treatment was December 23, 2016. Not quite the 6-8 weeks we were planning on.

While I was going through this, I was 100% dependent on Shawn, especially on treatment days. We were fortunate enough that Shawn had a company willing to let him work from home. The office was only three miles away, so if he needed to run in on a non-treatment day, it wouldn't be too big an issue. My life was quite restricted. I couldn't work. Driving was not allowed at all. Jarvis and I couldn't take walks by ourselves. I was pretty much required to have supervision if I were to leave the house, even on non-treatment days. All of this is because your memory gets FUUUUUUCKED! On treatment days, I was super useless. Shawn would bring me home and put me to bed. Then, I'd get up at some point and have dinner and watch something with Shawn. Seeing my therapist was kind of pointless because not much was going on with my brain being so messed up. I think I wasn't seeing the PsychNP, either. My ECT doc was my mental health provider for the course of the treatments. I didn't know it at the time, but Shawn was able to meet with the clinic's social worker as she was there to provide support to caregivers. I'm glad to know he had that. I did go down to a couple times a week to once a week at some point. When treatments became fewer and further between, some restrictions were lifted. I could drive, but had to have an adult with me. I could venture out for walks with Jarvis. Eventually, I was able to drive alone. But, come December, it was frustrating because things really weren't having the results we were hoping for. Shawn thought it was time to stop. I had no reason to disagree. So, we stopped.

Here's the thing, what I didn't realize was that I lost a year of memories. We've come to refer to 2016 as the "lost year" because I have almost no memory of that year. There are some flashes every so often. It even took away those few months of 2016 before treatment even started. When I see pictures from that time, they mean nothing. They look like I was having a good time. I hope I was. My dad had such a hard time understanding how this could be. He would talk to me about something and I would tell him I had know memory of it. Whatever it was, he thought it was so significant an event that surely it would have stuck out. At this time Captain America: Civil War came out. We saw it a couple of times, so I'm told. Shawn said that my chosen "side" changed with different viewings. When it came out on DVD, I think it was the fourth time watching, it was like the very first time seeing it and retaining it. So, yes, my memory was seriously FUUUUUUCKED by ECT.

I continued with my PsychNP after this. I stuck with her for far too long. But, the idea of starting over with someone else just stressed me out. The person who was known for prescribing the least amount of meds as possible, kept adding meds and/or changing my dosages. For sure I had gotten up to six medications, but I think it may even had gotten to seven. She checked my blood regularly because lithium is a real motherfucker. Side effects suck. I developed tremors, common for lithium users. One of the meds she added messed with my sleep. I also had one that gave me these weird jerky movements. We dropped those and moved to something else. 

She stopped taking my insurance so we decided to spread out appointments and pay out-of-pocket. Then COVID hit and in person visits were out. Like I mentioned, she has some weird issues with technology, so I bit the anxiety bullet and found someone else.

I really didn't think it possible to go from worse to worst. This guy, thankfully is now retired. But not soon enough for me. He decided to just go the bipolar route without really doing any kind of assessment. To him, lithium was the end all be all; an oldie but a goodie. I really should have stopped seeing him when he asked about my weight and said he may have to send his orc he found in a dumpster after me so that I would run to get more exercise. Again, I hate doc shopping, so I stuck with him. Also, he didn't have me get regular blood work. I didn't think much about it until my physical health started to get messed up. I was seeing my primary care doctor for something. He ordered blood work and was concerned, so he ordered more bloodwork for lithium levels. I was in lithium toxicity. 

I brought this to my psychiatrist who was like, it's just a tiny amount over the line. But, there is a line and it exists for a reason. Meanwhile, my tremors were so severe I couldn't do so many things like write; insert my debit card into the slot; use a pin pad or touch screen; turn pages; and, at times feed myself. I was dealing with incontinence, both bladder and bowel. There were times when, thankfully I was at home, I just surrendered and pissed myself and flooded the floor. My calcium levels were also getting out of control. My parathyroid glands, which I didn't even know were a thing, were not functioning correctly. If they suck, you have to have surgery. There isn't medication for it. So last September, I had surgery to remove the two funky glands, move the less funky one to my chest so that if it gets worse it'll be a simple outpatient procedure to remove it, and the good one was left in it's proper place. Thankfully, my thyroid is able to be controlled with medication. My kidney function and my liver are both being monitored on a regular basis. I had another surgery last year for a growth on my ovary that went through torsion. The ER was convinced I had cancer and within two days I was seeing an oncologist. So, that was it, all female reproductive organs were gone and I woke up in menopause. Not entirely sure if lithium can be ruled out for that, but it could be on the list. I also have curly hair. So many things. 

I got off of the lithium in September. It was my decision against the advice of the doc. He did a nine day taper. That is ridiculous! Then, October comes and I'm asking him for changes to be made. He swears by the lithium. He tells me I'm difficult patient who is beyond his skill set; that I refuse his recommendations; I care too much about side effects and therefore limit his medication options; tells me again to go to a certain depression clinic, which I already told him had a six month waiting list. This isn't my first rodeo when it comes to meds. I understand side effects are part of the game. But, when the side effects are severe and intolerable, I'm not going to take that medication. He then referred to treatment resistant depression instead of bipolar. So, what was I really being treated for? I laid into him. I raised my voice. He told me we should meet in person because the phone call had gone too long. I told him I was done and would no longer be using him for my care. He tried to talk me out of it. I stood my ground. He said something about enjoying having me as a patient. I hung up (not as satisfying with a cell phone, but still).  He was retiring, so I was going to need someone new anyway.  

So, I lost what little mind I had left. Once again, dependent on Shawn, he found someone new. Her take is:

Moderate recurrent major depressive disorder.

Panic disorder, also known as episodic paroxysmal anxiety.

Chronic post-traumatic stress disorder (PTSD).

This feels like we're getting back to Miller time (the name of the retired guy from years ago, not the beer). A little more like where I was before late 2015. I'm on a slow taper of one drug. The plan is to go through the dark to get to the light; to start fresh with medications. I'm down to only three medications. However, she's leaving the practice...so, in July, I will start seeing someone else in the practice. So, here's hoping for a better mental health journey.

Back to the elephant on the arm. I decided I need this tattoo to remind me where I've been. It's on my arm where I can look at it easily and often. The thought bubble is a play on elephants never forgetting, but for this one, 2016 is lost (not quite visible in the picture is a "?"). And the elephant itself is a symbol of mental health; of the good and the bad experienced in life; and, my simple love for elephants.

*Tattoo credit goes to the amazing Britton Dixon at Coven Tattoo.

This didn't really come out right

I don't know what has happened to me when it comes time to blog. There is plenty going on in my head - too much, really.

My current state is extra hot mess. I am physically and mentally all over the place. So many things are breaking me down. 

Recently, my dad's death has been hitting me hard. It's been harder than it was in the beginning months. It's just this weird feeling that it's not real. I think about it and wonder what will make it seem real? Will it be the first time I go to Cleveland since his death? Will it be seeing his grave in person?

The world and all it's changes get me to stay in bed. COVID, Texas laws, Afghanistan are all more than I can think about right now. I get choked up over the news. 

Work has me stressed out. There are changes that I don't know how to handle. My anxiety at the idea of certain tasks is manifesting itself physically. I'm not cut out for certain things. I'm not a people person.

I should be able to get my shit together. I used to accomplish things with less anxiety issues. Now, I tend to isolate and it's not because of COVID. Nausea is a constant and diarrhea is regular (so far no vomiting). Headaches and muscle aches are common. I'm quite tired. It's all part of the mess.

I have an appointment coming up with my shrink. I'm not all that optimistic right now. There are probably going to be med changes and that is a whole other thing I don't look forward to.

I'm just so tired.    

Can’t we all just wear a mask?

I was speaking with someone of the belief that masks don't really do anything and should not be forced upon anyone. The "you do what makes you comfortable and I'll do what makes me comfortable" point of view. There seemed to be the idea that mask wearers were mean toward those choosing not to wear them. They were being picked on by those in masks. I pointed out that it wasn't like the reverse wasn't the case. Right in front of her people were calling mask wearers "assholes" and "sheeple" and whatever else. 

I decided to point out what I see is the importance of wearing a mask. There was an attempt to explain that wearing a mask isn't for your own benefit but for the benefit of others. I said that I wear a mask because my 83-year-old dad who has diabetes and end stage liver failure would die if he was in contact with COVID-19. This wasn't a situation of he could, he would. The response was that she wouldn't be around my 83-year-old dad. I'm not around him, either. He's in Cleveland. This was meant to make a point and I guess I made too much of an assumption about that point being understood.

So, here's the deal. I wear a mask because I have many family and friends who fit into one or more of the risk areas for contracting COVID. They are people with COPD. Some with diabetes. I mentioned end stage liver failure already. There some who are obese (yes, myself included). Someone I know is pregnant and she is in a state that is way out of control with the number of cases and deaths. I know people with asthma. There are people in my life who have an autoimmune disease, such as Sjogren's Syndrome, for example. I know someone with Crohn's Disease who had a proctocolectomy and an ileostomy and now lives with on ostomy bag. I know someone who came through having COVID, but now her lung capacity is not what it was. She now has a difficult time doing the singing she had so enjoyed. 

I don't wear a mask literally for the people I've mentioned. They live all over the place. I'm not in close physical contact with all of them. I wear the mask because those people have health issues that are found in other people all around me. I'm sure the person I talked about in the beginning has people like these in her life. 

I wear a mask; Shawn wears a mask; other people we know wear masks. We all wear them to protect others from ourselves. Why is it so difficult to reciprocate?

Just wear the mask. Wear it without needing a government mandate. I wear mine for you. Can't you wear one for me?....or, if you don't like me, wear it for someone else who needs you to, someone you love.

There must be someway out of here

Anxiety has been an issue for me as far back as I can remember. There's the whole having a tummy ache every time we ate at a restaurant situation. Then taking a standardized test in 3rd grade and almost peeing my pants because I was afraid to ask to go to the bathroom. We were told there could be no disruptions. The list goes on all the way to this very moment.

I was thinking about all of this today while talking to my therapist. A lot of the situations when anxiety kicked in had to do with making an exit. I was looking for physical exits. But, also looking for how I would excuse myself; how to leave.

A couple weeks ago, when I was already in bad shape, there was an event at work. I wasn't going to go, but a friend was going to be in town and would be at the event. COVID issues were certainly on my mind, but that really wasn't the biggest cause of stress. I was anxious about being around a lot of people and most of them being strangers. I had my usual anxiety induced talking too much. I started to think it would be a good time for me to leave. Then, of course, a storm blows in. Major rain and wind causing people to come inside. So, the crowd anxiety grew. I was parked in a field and trying to get to my car through the wind and rain didn't seem like a good idea.

There I am, my exit plan foiled. 

I ended up staying much longer than I intended. A little ceremony started and that sealed the deal that I was going to be staying. 

When that ended I tried to make my move. I knew it was about to get bad. And...I get stopped by a couple of coworkers. They wanted to get a group picture since my friend was in town. I was having a hard time getting out of this conversation. I kept feeling like they thought I was being a bitch because I wasn't wanting to stay. I could feel the anxiety welling up and exiting through tears. They know I'm pretty strict about masks and distancing, but that wasn't what this was about. One said that we could do one the next time my friend visited. I was on the edge of full on crying. I wanted her to understand that it wasn't a mask issue or a being too close issue. This really was, strictly about my general anxiety issues. 

I leave the building and there is someone I really needed to say goodbye to. She was right there, otherwise I wouldn't have sought her out when I was such a wreck. But, she was there. Then I went to my car and was able to get relief. 

I made my exit, in one of the worst ways possible for me, but I got out.

Things need to get better as my last entry shows. Things need to improve. But, I can't force things to happen. My head doesn't work that way. Until everything is figured out, I'm stuck in this hell in which I'm pulling back, isolating, and avoiding.

I'm bad, but not in the good "Bad" way

I'd say it's been a month of dealing with the mess of mental illness, probably longer. I've pulled back, retreated, isolated and not for COVID. The world is, in fact, too much and I can't tell you how this ride is going to go. This is going to be a trip in my head as it has been recently.

I'm afraid, like seriously afraid of 45 winning in November. I'm not thrilled at the idea of Biden, but I would say, "President Biden" with ease. I don't think I've actually ever referred to 45 as "President". I'm concerned the Bernie people will do a protest "vote" by not showing up and, therefore, voting in the incumbent. 

I'm surprisingly not as scared about COVID as people think or expect. I'm just frustrated that there are people who aren't taking it seriously. I'm also annoyed that wearing a mask is such an issue. Just wear it. Protect people, loved ones or not.

So, Shawn kind of put a suggested ban on me watching MSNBC. 

That stuff is so minor compared to how really bad things are.

I don't want to leave the house. Not because of COVID. I don't want to go out except when I walk Jarvis. I have to really work on convincing myself to do it. I put everything off. I need Shawn to be with me. I suck it up for work...that's because Shawn and Jarvis coming to work with me didn’t work out well. We thought Jarvis would love to have a yard to play in, but he knew I was in the building and that didn't work for him. Shawn takes me to the bank. He goes grocery shopping with me. The anxiety is so much. We shopped at Costco the other day and I cried in the Fish Oil section because none of the brands had the right potency. And, if I bought enough to make up the difference, the cost would be too much.

I get my shit kind of together to do work, respond to work emails, update our account on a pet search site. Otherwise, I don't communicate much with anyone but Shawn, Jarvis, my mom, and my BFF - Shawn and Jarvis being the most. I just can't right now with so many things.

My bedtimes vary. Super early some days and really late on others. I sleep late and stay in bed a lot.

The anxiety is terrible and the meds aren't working. A change to the meds is being worked on. As many who deal with mental illness know, med changes are tough. They can take a long time to start working. It can be a couple months. I'm not sure I have that in me right now. 

Shawn is amazing. He is super talented and I'm not going to deny that I'm jealous - or envious - whichever sounds less like an asshole. He just has so much going on in his life and that's not including taking care of me.

I used to be proud of myself, I think. Maybe I just used to be less hateful toward myself. I had a real, significant income that helped us out. I mean, I was making double payments on our fertility treatments to get them paid down as quickly as possible. Now, I can't imagine what I could possibly do. 

I cry. I cry about all the things. I can't tell you what it will be about. I mean, I cried in public about Fish Oil. I cry at TV shows and movies. I cry taking a bite of dinner. I cry in bed while using my coloring app on my phone. I cry when I fail at something, like spilling something. I cry at moments of pride about Conner, so that's kind of an okay thing to choke up over. I cry.

Lately, I've been thinking that ECT fucked me up. That it made me worse. My anxiety leads to vomiting and diarrhea (TMI?). I don't remember that before. But, I don't remember a lot of things from that time. 

My avoiding messages and not being active on social media is not you, it's me. It is really me. I can't handle myself right now and so I can't handle things and people outside of myself. I'm sorry if that is hurtful, but truly, I mean it, it's not you, it's me.

I don't know when I'll be back. There is so much more to everything in my head than what I've written here. Too much, really. I need to figure things out.

Just wear it

There are so many things going on right now. Things that are divisive. A different view on the handling of matters related to COVID. I have changed the way I do my job. My therapist and I have appointments over the phone. It seems like forever ago that we had an in office visit and who knows when we'll go back to them. I don't mind these things if they are going to keep Shawn, me and others safe.

Our life has changed in other ways. We were kind of homebodies before all of this, me more so than Shawn. It is kind of funny to me that being someone who stays home a lot was different when it was my choice, but when it had become a government order, I was a little annoyed. With all of this, we go out in public the least amount necessary and when we're out, it is for the shortest time needed to get things done. We wear our masks. Do I find them comfortable? No. But, I wear a mask to protect others from the chance I am infected. I wish those who don't wear them had the same consideration for us. 

Connect the dots

This is going to start off a little weird, like not 100% fitting to the post as a whole.

When I was little, like early elementary school, I was pretty familiar with funerals. My dad's aunts and uncles had started to die. I remember his grandmother dying. She lived in a nursing home a good drive away. She had broken her hip and then developed pneumonia. So, I came to associate breaking a hip with dying. I didn't really understand the pneumonia part, but in my mind, the two were connected.

As I grew up, I discovered that a broken hip doesn't cause pneumonia. I started to understand the connection of the broken hip to pneumonia was only that being bed ridden caused fluid to build up. Being as old as my great-grandmother was, all of these things created the perfect storm for her to be unable to combat the pneumonia.

Pneumonia.

Come the late 80s. The AIDs epidemic was making its way through the world. Our little corner of the world was not safe. My dad's cousin was infected, full blown AIDs, not HIV. Then, that word, pneumonia, crept into our vocabulary again. When he passed away, AIDs, itself, was not listed as the cause of death. I learned that his death was from pneumonia. There was no broken hip involved in this case. There was AIDs and the suppression of his immune system. So, it was death by pneumonia due to the immunosuppression from AIDs.

COVID-19

Here we are, 2020 and a pandemic. I know pneumonia has played a part in this. I have a friend who was infected and ended up with pneumonia. She has recovered, thankfully. But, is it really surprising to have pneumonia rear it's ugly face?

I'm going to stop with the pneumonia talk, but not with the cause and effect piece of how health conditions can connect.

Governor Cuomo of New York recently adjusted the number of COVID related deaths causing an increase to the statistics. And.......then comes 45 and his COVID briefing. He gets in his expert over all the things mode and criticizes Cuomo. He implied it was an attempt to make things look worse than they are. Well Dr. 45, MD, shut the fuck up. A patient with COVID can have other health problems arise. So, yes, it is possible to have a fatal heart attack due to COVID. Let real doctors, not lackeys, but real doctors who are fighting along with all other types of medical personnel to educate the masses.

The 7 year bitch

Every year, around this time, is a bitch. It’s not because of my birthday. I don’t meet that age denying female stereotype. I’m more of a “meh” person about my age. This is a deeply painful time of year.

If you’ve kept up with this blog you should already know about my fertility issues. Seven years ago we went through around of IVF. We only got to do one round. My eggs were few and quality was low. The embryos were implanted just around my 38th birthday (just got off the phone with my dad and he mentioned he was 38 when I was born. Just thought it was interesting) and the implantation failed. I saw the blood and knew it was over. Those few days were terrible and are forever connected to my birthday.

This year, I’m ringing in 45 with a stressful time at work and the COVID-19 pandemic. No birthday date night with dinner at a restaurant of my choosing. I should, however, mention the positive side of things with Facebook birthday well wishes.

Should you go back again?

I've been having some real moments lately. Crying spells and exhaustion. Sometimes I think about ECT. Thoughts sometimes that maybe I should revisit, even with the amnesia experience, I sometimes wonder if I should. Shawn tells me that it didn't do what we had hoped the first time, so why would we go through it again? Why? Well, it's a legit reason to sleep the day away. At least treatment days. The amnesia sucks, but sometimes, not so much.

Sometimes.

Shaky McShakesmore

It's been going on for quite a while. I have shaky hands, particularly the right, of course. It has to be my dominant one. I've looked up the side effects of my various drugs and from my ECT treatments. I couldn't find anything about it being from ECT. Lithium seems to be the likely culprit. Lithium also can contribute to my memory issues, more short term, minor things than ECT has caused. This can hopefully get worked out with new medical insurance and a new psychiatrist.

Last weekend and this week have hit me particularly hard when it comes to the fine motor skill trouble. I've been pretty down for a while now, but more so this last week. I found some art supplies that I haven't used in years. I thought maybe I should try to do some stuff, do more than sit around with my laptop and the TV. So I picked up the pens and the pad of drawing paper to get going. I was trying to go back to my days of abstract design.

I couldn't do it. The right hand wouldn't allow a straight line. I couldn't make a shake-less arch or loop. It brought me to tears of frustration. I can't imagine that I would be able to do a portrait such as this again:

I also tried to paint the way I used to. I did a water effect with a wide sponge-brush, but I haven't had it in me to really try to paint the fish I want to do. Smaller details are so difficult.

There are many other things. Things that you probably take for granted. Things that start to make me cry or to make me extremely frustrated. Sometimes, using a fork is a challenge. Not for big things that you stab, like a piece of meat. But, trying to eat something like rice or something like coleslaw can be a really annoyance. Scooping with a spoon isn't too bad, but getting the spoon to my mouth can be tough sometimes. Pouring things can sometimes be a problem, but not always. 

Trying to turn pages or separate pieces of paper can make me seize up and want to throw the things across the room. Writing isn't always a problem, but there are moments. This week I used a drill and screwdrivers. While holding the tool with my right hand, I need my left hand to hold the end to place it into the head of the screw. Once I do that, my right hand can handle the turning, for the most part. But, if the screwdriver slips, I need my left hand to swoop in and grab the end and place it in the screw head again. 

I know it could be worse, a lot worse. But, that doesn't change how bad I feel when facing these things. It sucks. Among many other things, it makes me cry and can cause me to fall into one of my lows. 

Maybe it's the Lithium. Maybe the new insurance will lead to a better doctor who can come up with a better treatment.

Until then, I'll be Shaky McShakesmore.

Two months of intense caring

Two. Months.

August 16th - September 16th

I start this with August 16th when my dad was actually admitted to the hospital on August 13th. I flew in from my home in Colorado, leaving Shawn and Jarvis to hold down the proverbial fort. From the 13th through the 19th, my dad was on a medical floor. That's were he was being treated for all the things jacked up by his liver. Then, the 19th through the 28th he moved to a skilled nursing floor (SNF) for inpatient physical and occupational therapies. On the 27th he went to ICU in a desperate attempt to get him to the Main Campus of the Cleveland Clinic where they had a unit that would focus on his liver which wasn't available at the Euclid Hospital satellite branch of the Cleveland Clinic. That attempt didn't work, so he was transferred back to the medical floor. Then, on the 31st, he made his way to Main Campus. His time at Main was August 31st through September 5th. And, finally, back to Euclid's SNF and lots of PT and OT from September 5th through September 16th. Then home.

So, month 1 was all about the hospital stays. He was having procedures. We were talking to doctors and NPs and nurses and aides and physical therapists and occupational therapist throughout all of that time. I was learning things I had known nothing about, such as, the body has ammonia in it. For real, ammonia. The liver is supposed to flush it out and when it doesn't it goes to the brain and turns you into a different person. My mom and I spent most of our time with him. We worked on crossword puzzles and watched TV as he dosed in and out. I would help him with his meals because opening his drinks and other sealed items took fine motor skills he didn't quite have. On SNF, he could wear regular clothes to go to therapy. In the evening, he would go back to his gown and, at times, I would help him change. One day, I noticed his legs were dripping fluid. That was something I could have done without seeing. Some days I had to brace myself for visitors who were not my cup of tea. That's a tough one. There was one afternoon when my mom and I had gone to get something to eat. My mom decided to call the priest from their parish to have him visit, maybe bring communion, too, I can't remember. She found out that he had just been up their. When we got back, my dad was in a terrible state, almost completely reclined. His respiratory therapist came in for his afternoon treatment and he shooed her away. He asked me to come over and I bent over to hear him. He whispered to me that he didn't think he was going to make, that he was going to die. Believe me, this is not anything you want to hear from anyone you love's mouth. We heard from others that sometimes, when a minister of some sort visits and bestows a blessing, the patient can take a turn because they see that experience as a sign of impending death. Thankfully, he perked up. He was quite an ornery patient and I often had to explain things to him. Sometimes, he would understand, and other times he would continue to be difficult.

September 16th came, and he was discharged.

September 16th - October 16th

This begins my last month. This period of time may have been worse. There was no aide to ring for to go to the bathroom. No nurses to be the bad guys dispensing his meds, especially his lactulose. It was the medication to help his ammonia levels lower. It's a disgusting, orange, syrup about which he would grumble when having to take it. My mom was trying to come up with meals that would meet up to the special dietary restrictions he needed to maintain outside of the hospital. I was working on a family calendar for people to help my mom with getting my dad to appointments. I was also sending emails to my siblings to summarize the hospital discharge notes and any other information from other appointments. One thing I never saw myself as having to do is empty out a portable urinal, but there I was. Some days were shitty, literally and figuratively. Lying in my parents' regular bed was not working out well, so he would sleep in his recliner. It was the kind that can lift you into standing and can put you horizontal. Some nights, I'd hear him in the middle of the night. There were different things he was moaning about. One night, he needed more water. Another time, it was to tell me the newspapers on the floor next to him were ready to be recycled. He was having some hip pain and pain from a sore one night. He couldn't really roll to his side. So, I got some pillows to prop him onto his side. I had to push him and hold him on his side while trying to position the pillows. Thankfully, it helped. There was also a time where he was afraid he missed his friend's birthday. I looked through the pile of items to be mailed and told him there wasn't a card so it must have been mailed already. He then cried because it was also his favorite aunt's birthday. He went back to being upset about his friend. He talked about his friend not knowing about all that had been going on. He mentioned that he always calls his friend. So, I told him he could call his friend the next day. I wrote a note, "Call Joel for his birthday" with his phone number in large digits. I put it on the table next to the chair. Then, I can't remember how, but I found out he that it was March. I told him he could still call Joel, but I just crossed off the birthday part of the note. It was weird how the lucid moments would happen, often when visitors were around. My mom and I bore the brunt of his personality switch. We did have some good moments watching the Democratic candidates' town halls and debates.

October 16th, the day I was leaving, it was like my dad had rebuilt all his strength and channeled it into the grip he had on my arm as I was heading out the door.

Two. Weeks.

October 16th - October 29th (technically 13 days, but still)

I got back to Denver and was so lucky to be greeted by Shawn almost as enthusiastically as by Jarvis (😉) It was nice to get a message of appreciation for all that I had done over my 2 month stay. I wish I had more of that. That probably sounds selfish and needy, but so much happened in the time in Cleveland and I was exhausted. I have felt underappreciated. I don't know what to do with myself now that I'm back. My days were filled with so much and here I am doing next to nothing. I didn't capture all of the things from Cleveland in this post. The toll some people and some things took on me is significant and probably best unsaid. My mental health has taken a hit. In the end, I did my best and now that I'm back home I'll have to figure out the rest.

Oh, what a mental health day....life

It's World Mental Health Day and I feel a sense of obligation to write today. I'm just not sure what to say.

Over the last two months, I feel like my mental health has been challenged, but I haven't necessarily been up for the fight. I've been tired, not just sleepy, but tired in my bones, my muscles, and my ability to handle my stress and emotions. My level of frustration and guilt has lead me to extra Ativan in the hopes of easing my anxiety and the extreme nausea it brings. I feel overwhelmed about leaving next week. I desperately want to see Shawn and, of course, Jarvis. The hope I have is that they will bring me relief and calm, they will distract me from my sense of worry.

On the topic of mental health, but not really like what I've written above, my mom and I had an interesting conversation. We both suffer from mental health issues. Her meds seem to work pretty well, so perhaps I'm the one suffering. Anyway, the other day we had a conversation which is probably not a typical one for mothers and daughters. We talked about suicide. We talked about our thoughts, our ideations. One of hers was terribly violent, if you ask me. She was young, still living at home, dealing with depression in an era in which you didn't, and saw a letter opener...to shove...in her neck. It made my car crash, overdosing, car running in the garage thoughts seem really calm. For both of us, they were suicidal ideations, they weren't actual plans. We're both still here. For me, I can't exactly say why, but I am.

In the general sense of life, I am here. I am here and I am with Shawn.

Two weeks left of the most difficult two months

For some reason, I thought I would be blogging more while being out here helping with my dad. Maybe it has to do with being tired and busy, I don't know. I have two weeks left and I'm ready. That probably sounds shitty, well, I've felt shitty.

I know Eleanor Roosevelt said, "No one can make you feel inferior without your consent." God, I wish I had her steadfastness. I'm still here feeling terrible because of the words and actions of another at a time when I really am trying to muster all the strength I have. I've been dealing with what might be considered Imposter Syndrome. I feel like I've done nothing near to what some think. I've not earned the kind words of others. Shawn says I have, so I should try harder to believe him.

But, what this entry is really about is hepatic encephalopathy again. 

While talking with Shawn during one of our nightly phone calls, I told him one of the things I have come to realize. When all is said and done, whether I stay here longer than 2 months or stick to the plan, my last memories of my father will not be the way I would choose. The hepatic encephalopthy distances me from the Dad I have always known. It has changed him in ways I do not like to see. Many visitors get to see him when he is rather lucid and don't really experience what my mom and I do in what I refer to as the witching hour. No matter how much I try to remind myself that he is not himself, the "this is the disease talking" mantra works very little. I lose my patience, there is no reason to lie about that. This mean, crabby, demanding, and angry man is not my dad; it is high ammonia levels and end stage liver failure. I need to try to recognize that. 

I should try to hold on to this and this, 

Hepatic Encephalopathy - the biggest struggle of my life

My dad was admitted to the hospital on August 13th and I came to town on August 16th with a plan of staying until October 16th...I'm struggling with it.

This is an email I sent my family. The only thing on the list that wasn't really a reason for the visit was his Diabetes.

"I'm sending some info about Dad's various health issues we are dealing with. I think it is important for everyone to be on top of things. Mom needs support and backup when possible.

Diabetes - From what I understand, Dad is a terrible diabetic. He has manipulated his insulin to eat things he shouldn't. I have heard about this from family and friends of his. His diet is regulated at the hospital. He should only be eating what is brought to him on his tray. What he ends up eating off the tray is logged. Right now, his blood sugar is getting closer to a healthier level, which, ideally is under 140. Food should not be brought to him. He, at this point, cannot make decisions about foods that impact his diabetes negatively. His intake of fruit or cake are both an issue. Anything ending in -ose is sugar.

Grade II esophageal varices - These are, essentially, varicose veins like people have in their legs. However, these are in the esophagus. The issue with these is the possibility of rupture and bleeding. Dad is a bleeding risk and his platelets tend to be low so if this were to rupture, it would be a very serious, if not fatal, situation. When he was at the Clinic, he had a procedure to have them banded. They only band up to 6 and that was what happened with that. In a couple weeks, he will go for his first follow-up check and will continue to have things checked. I don't remember how often.

Nonalcoholic steatohepatitis (NASH) - This is his cirrhosis. The liver hardens and then things go downhill. His liver does not function properly and will not ever again. The failure is what causes the big problems. It causes the fluid that builds in his abdomen and things like the high ammonia. It just can't filter out the toxins.

Hepatic Encephalopathy - This is liver related brain malfunction. Toxins, like ammonia, that are not being filtered correctly make their way to the brain. I'm pretty sure everyone has witnessed this in Dad. The ammonia levels are a big part, but other things that aren't flushing out through the liver can add to it. The treatment for the ammonia issue is a drug called lactulose. You have probably been in his room when he has taken it. It is a syrupy orange liquid that he turns his nose up at. Today he was increased from 4 to 5 times a day. You may notice him needing to use the commode more as his body adjusts. This might get a little better, but his confusion/agitation is pretty much his new normal.

Splenomegaly - This is an enlarged spleen and it is another effect of the liver disease.

Recurrent Ascites - This is the abdominal fluid that he has to have drained. His drainage has been a little over 5 liters, 5.5 liters, and 9.5 liters. You may have noticed his abdomen on the left side looking full again. There has not been talk of another tap yet. They are trying diuretics (meds that cause urination to flush the system), but it doesn't seem a likely solution. Continuing taps will most likely be the way things go from here on out.

Thrombocytopenia - This is low platelets. He should never be on a blood thinner because of this. The severity of the bruising he has on his arms are an example of his bleeding problem.

Now, for something on the upswing that needs to be encouraged. He has physical therapy twice a day and once a day he has occupational therapy. He has surpassed expectations at this point. It's great, but once he comes home, he needs to keep things up and not go back to the sedentary lifestyle he has been living. An example of something is not spending all his time in his chair and not using the lift function in place of using his own strength. He hasn't worked on steps yet, so not sure how that will go. If he could just manage the few steps to get in and out of houses, that would be better than nothing. Getting back to Church is something he has mentioned, but again, that is not something easy and he'll really need to work on that. I'm not sure how this will all play out, but right now, he's doing more than I ever expected.

Also, family is allowed to be with him in the therapy room. The times vary, so you'll have to check. It is on the 4th floor. This can be good for moral support and giving the therapists info. He really can go off on tangents and think he's answering questions when he really isn't.

There are more things I have done, seen, heard, and learned since I got here in mid-August than I ever expected for my life. If you have questions or anything, you can ask and I'll see if I know. Or, get in touch with Mom.

Thanks"

On September 16th he got discharged after bouncing around from hospital to hospital and back to the original hospital.

Of all the things on this list, Hepatic Encephalopathy is the worst to deal with as far as care giving. He is a completely different person. At times, my mom and I look at each other with a head shake. I've said it's like dealing with a toddler sometimes. I've heard him say things I've never heard from him. His abdominal fluid issue is relieved for a time when he has tapped. This doesn't work like that. The medication used for it is only really used to try to keep things somewhat under control. Honestly, I cannot picture what he would be like without the medication.

The is the most difficult time of my life and I had ECT and lost my memory of 2016.

And so...

I woke up around 2:30 this morning. It was all about the puking. It's been a good month or two since my last go 'round with my asshole stomach.

Today is the 5th anniversary of my hysterectomy. I had this thought that my stomach was trying to remind me of the whole disaster which was all my reproductive parts. Well, all except one of my ovaries. Anyway, I don't know that I really believe in something like that, but it did cross my mind.

How has it been 5 years? Each year I want it to get easier and I'm not sure that it does. Maybe it's a little more difficult this year because my remaining ovary is kind of a bitch lately. I've been thinking about having it taken out. Taking it out means instant menopause. Do I want that? I don't know.

On to another year.

Here I go again.

I've been binge watching Six Feet Under. I watched it years ago. I'm on the final season and it's been tough. Ruth Fisher (Frances Conroy) is married to George Sibley (James Cromwell). George is struggling with psychotic depression (not what I have, to be clear). His treatment is ECT, which, we all know, is something I am very familiar with.

The way the show's style is, there are scenes that turn out to be in someone's head. You have this moment of thinking, "Is this scene for real?" So Ruth is on her own taking care of George. They are at the kitchen table and she absolutely looses her shit! She goes on about having to be his caretaker and not having help and all of the resentments that she holds tight and the rage she feels.

Where I went for my treatments, they had a social worker who would focus on being a support for the caretakers of the patients. Shawn was seeing that social worker which I didn't know, or maybe I did know but didn't remember. I mean it was ECT.

As I watched Ruth have the meltdown in her head, I thought of Shawn. I thought of what must have been, what must be in Shawn's head when it comes to me. I wondered about his sessions with the social worker. I wonder what feelings he swallows

There's another character who takes lithium and seroquel, two of my five drugs. He decides to stop. I wonder what that would be like.

I ordered all by myself

I posted on Facebook about how I successfully ordered my food at Qdoba without having to check with Shawn. It seems like a silly thing that I may have been goofing around about. But, I have struggled with remembering something that minor. I believe it is just more effects of my ECT treatments. My brain is just fucked up in different ways.

We are coming up on 3 years since my treatments began. I talk about it probably more than people think I should. Oh well, come back to me when you've gone through it.

I had some curiosity about numbers. I wondered what the average number of treatments is. Basically found a range and the high end was 20. Three times a week seemed the norm, so we're looking at 6 weeks plus a couple days. I had double 20 treatments.

39 Treatments

I was looking through my paperwork and found 39 treatments, so that could be more if we misplaced any. I started out at 3 times a week for a couple months and then slowly spread things out. Then, Shawn finally said it was enough; things weren't changing. I went along with him since I really couldn't gauge things very well for myself. If he wasn't seeing changes, I trusted him. Through it all, I do remember the end. I remember the doctor telling us he disagreed with our decision.

So, my memory is a hot mess. Before, during, and after all the treatments, I've lost some things. I've lost a lot of things. Some things have come back, some things are fuzzy, and, so far, those things are still quite outnumbered by the losses.

UPDATE: I found another sheet from a treatment. So, it's 40 treatments.

Searching

It's been a while since I've posted anything. I've had some thoughts, so it wasn't for lack of things to say. This is probably a good example of what depression can do. It wasn't that I didn't have anything to say; it was that I didn't have the will or the energy to do it.

Anyway, that's not the focus of this post.

What I'm dealing with right now isn't really a unique thing to those of us with mental health issues. I can imagine that many with chronic illnesses have a similar experience. There are certainly varying degrees.

I have come to a point where I need to find a new psychiatrist. Things have just not been working. Plus, my current doctor is no longer on our insurance, so that's a practical reason for change. Shawn and I are on the same page with needing to make a break and move on. Actually, it was time a while ago.

So, why would I stay? A psychiatrist isn't like a primary care doctor who you see for a flu shot, a cold, or a basic physical. Yes, you do have a relationship with a PCP. For someone like me, a psychiatrist is deeply involved in my life. There's a level of intimacy that I don't share with some of my family. My psychiatrist is treating what is her best guess as to what is wrong with me. It's using her notes, whatever history I have given her, and playing with combinations of medications to try to get me well.

Trying to find a new psychiatrist is stressful. It fills me with anxiety. It means finding someone I am comfortable with. It also means that I have to remind myself that just because I meet with a psychiatrist, that doesn't mean I have to make that person my new doctor. I can go through an "interview" process with them. Then, once I select the doctor I will see, I have to go back to the beginning. It's the re-telling of my story. I have to go through my medication history, which quite frankly, I don't have the best recall of that list. Whatever files the new doc get transferred to him will have my best guess as to my history. Also, what happens if this doctor looks at my current diagnosis and says, "Oh, fuck no! Not even close!"? I mean, my current doctor is the first of 4 who came up with a bipolar depression diagnosis. Where the others wrong? Will the new doc agree? There is no blood test to diagnose these things. If the new doctor disagrees with the diagnosis or the medications, that means a pretty significant change. Changes in medications are difficult. The side effects can be so horrible and it can take a few weeks to even know if the drugs are working. So, you may suffer through some side effects, which may wane after your body adjusts, only to have the medication prove to be in effective. It's a lot of work physically and mentally.

And that is why it sometimes seems better to stay put. 

Tick Tock, I still keep track

It's that time of year again. I'm recalling the day of my hysterectomy (I spelled it right all on my own). I'm still waiting for the year that it's," Hey, that happened and we've moved on. We are too old for that having babies shit, anyway." Guess what? Big surprise coming! This is not that year.

I have come to realize that in all of this time, I have not been physically around a pregnant acquaintance (okay, I need the little, red, squiggly line to help me spell that one) or friend. There's been FB stuff, but no reach-out-and-touch (not that I'm touching) someone proximity. 

Now, that I am around someone pregnant. Someone I see a couple times a week, I realized just how hard it can be at times. I'm happy for her and her husband. I wouldn't want her to change any of her experience around me. Life goes on and there is a bittersweet feeling I hold inside, but that is not for her to worry about. 

What got me recently was her describing the feeling of pregnancy. I don't remember exactly what was happening. I just remember finding myself wonder what it felt like from the inside. What happens when the baby moves? Kicks? Hiccups? All those things. The curiosity I have that will never be sated. 

So, there are the 4th anniversary thoughts. Below are other related posts.

Just to be clear, this may be TMI

Thoughts-ectomy

Things still aren't how they were supposed to be

The right thing sometimes sucks

Unhappy Anniversery

2nd surgeversary

Three years since the day I thought I stopped being a woman

Celebricide

Not too long ago, I was living in the darkness, not saddness. There was crying, sobbing, wailing, and blurting about being done. I didn't know what done meant, exactly, but I wanted it. I had gotten into bed in an attempt to bury myself in the dark.

Shawn was having none of it. He talked of committing me (so far in this life, that has not happened). He raised his voice and cried. He told me if I chose to kill myself he would hate me forever and never forgive me. And then, somehow, he talked me down.

This is Shawn's life. His life is not #AnthonyBourdain, #KateSpade, #ChrisCornell, #PhillipSeymourHoffman, #RobinWilliams, and #AnyOtherCelebrityWhoBringsSuicideToTheNewsCycle. The celebrities bring about people sharing suicide hotline numbers and offers of being that ear that will pull you out of the darkness. People call these suicides a wake-up call...which, after a brief time of social media posts, sleep returns. Shawn lives the wake-up call without the chance to go back to sleep. Many people live wide awake everyday.

The things people want to do in the light that shines upon suicide prevention and mental healthcare when a tragedy like celebrity suicide happens are great. Lobby for better mental healthcare coverage. Post phone numbers to hotlines. Check in on friends and family who seem off. Commit someone if that seems appropriate. Come up with a code word for your person to text you when things are getting bad. Do all of the things. And, continue to do them, even when the news cycle moves onto something else.

BUT. A really big BUT. The BUT-that-is-probably-going-to-piss-off-many-people kind of BUT.

Prepare yourself. You need to know that all of those things may not work. Why won't they? Because it takes two and only one of the two is rational. I HAVE to answer my phone. I HAVE to text the code word. I HAVE to let you in.

I'm not saying don't try. Always try. I'm saying that if, despite your trying, it happens anyway, you have no guilt to carry. The guilt belongs to the irrationality that is the mental illnesses some of us have to carry.