MY UNCLE’S CHOICE OF TREATMENT

My Uncle Jimmy was diagnosed as Paranoid Schizophrenic at an early age. He heard voices and had hallucinations. He was sent to the State Mental Hospital that we had at the time. My Grandmother worked there and the place was eventually shut down for their abuse of patients. There is a Cemetery on the grounds with hundreds of unmarked graves of the bodies they found while doing construction years later.

I believe my Uncle Jimmy was probably treated in a horrific way while he was there. Of course no one wanted to talk about it. The high dosages of medications they had him on left him with a constant tremor in his hands and he had problems with his grinding his teeth. He always had white spit in the corners of his mouth.

My Grandmother gave him over to the State when he was young. She did this with a few of her children. My Uncle Jimmy wasn’t violent he just didn’t have a filter that society expects a person to have. He loved to smoke and drink coffee. He hated the medications that made him like a zombie. He could either stay at a State run facility where they had control over him 24 hours a day or he could be homeless and deal with his illness in the way he preferred. Heroin. He chose to be homeless and to use Heroin.

I don’t condone his decision but I understand it. I had seen him at the State run facilities and it wasn’t a way anyone should have to live. He was in all honesty happier while on the streets. He did share needles with other addicts, a majority of them also mentally ill. He contracted HIV and lived with the virus for many years. At some point he stopped his drug use. I’m not sure if it had to do with his age or his health. He did advance to AIDS about 2 years ago and passed away from pneumonia.

I never saw my Uncle Jimmy not smiling. My mom loved him and tried to take care of him as best she could right up until she herself passed away. She always knew the gas station to find him at and would bring him hot wieners. He was her baby brother and mourned her death pretty hard. I miss his corny jokes and hearing him call my mom “Anna Banana”.

Like I’ve said before no mental illness or addiction is the same for everyone. At least not in my family. We laugh the loudest and cry the hardest. We always have.

The Chauffeur And A Change In Routine

My father is having surgery on his remaining Cataract tomorrow morning. Tomorrow is also a dialysis day for him and he usually does the early morning one.

The Eye Clinic called about his appointment and he told him to make it for 6:00 a.m. and he would do dialysis at 2:00 p.m. and they agreed.

The problem is he obviously can’t drive himself. My sister drove him last time because I just had surgery and couldn’t. There’s no way she’s waking up 5:00 a.m. to take him this time so I have to.

The problem with this is when I’m thrown off schedule with my sleep and the medications that actually do work (Adderall and Klonopin) it changes my behavior or mood. I am always worse in the morning and I’ve been like that for years. I do get better as the day progresses but start to go down again by 3:00 p.m. it’s a short window where I feel kind of okay. I’ve had trouble leaving the house for the past 6 to 8 months. My dad and sister believe if I’m forced to leave the house it will help me. They don’t realize how many times I sit in parking lots and cry.

It’s more about what I see and feel when I leave the house. I see new moms laughing with their babies, I see happy couples shopping together, or sometimes I talk to someone and feel like I’ve talked too much and embarrassed myself. I think people can tell I’m alone and starving for conversation, that I’m desperate. All of this hits me when I get back to my car and sit there crying. Sometimes it’s a smell that brings back a memory or on occasion I think I see my mom. The World starts to crumble and I can hear the blood rushing to my ears while my face becomes hot.

So I have to be the Chauffeur tomorrow all while trying not to cry or say the wrong thing because I’ll get yelled at.

My sister sent me a text today wanting to know which was better Amazon Prime, HULU, or Netflix. So I gave her the information on all three and broke it down for her. I don’t know why I did it took me almost an hour to put everything together and she never responded or thanked me. I should be used to it by now but it takes many, many, bricks to hit this head before I realize what’s good for me and what isn’t or do something about it.

For 2 people so concerned about my mental health they do a good job at trying to destroy it.

A REALLY BAD DAY

Last night I sent a text to my twin sister saying I wasn’t leaving my room for awhile. I wasn’t going to talk to anyone, eat, or do anything. I don’t talk to anyone anyway and when I said I wasn’t going to eat it was because when I do it doesn’t stay with me for long. I am also extremely tired all the time. But the text didn’t explain all that and sounded like an emotional threat to her.

She responded this morning with excuses why she hasn’t contacted me or my Dad and how she has been really busy and in pain all the time. She also mentioned that she hasn’t had to answer several other texts, she’s been too busy going to the kid’s baseball games, a parade and running the concession stand.

All of this pissed me off for some reason. She couldn’t find one minute to call our Dad on our Mom’s birthday knowing he would be down? To that she replied “F*ck You”. It only got worse from there.

It ended with me being in the same boat as my brother. Banished.

For as long as I can remember she never wanted people to know we were sisters let alone twins. I felt like she was ashamed of me but couldn’t understand why. She made the rule that we couldn’t have the same friends starting in Junior High. This is still the case even now as adults. It hurts. She can’t or won’t explain why.

I do resent her and feel bitter towards her because she has been able to have a “normal” life. Also because she never involved herself in the messiness of death or anything else I’ve had to deal with on my own.

I know that it’s my choice to stay here with my Dad. If I did leave I know he wouldn’t last long and my sister would do nothing about it.

I feel anxious, alone, and scared. Most of all I feel a tremendous sadness. I don’t want to be like this anymore. It’s never going to end. I’ve been told it isn’t. I’m tired of being dismissed. When I do talk no one listens. I talk to my dog because at least he looks like he’s listening.

DEAR DAD, YOU ASKED WHERE YOUR LITTLE GIRL WENT….

Dad, you asked me the other day “where your little girl went the one that was always happy”. I told you she’s been gone a long time. You didn’t want to believe me so I had to explain it to you. I know it hurt you to hear it and you stopped listening. That’s part of the problem. I know you feel guilty because you noticed things that were odd and discussed it with mom. The both of you talked about taking me to a Doctor when I was very young. You both decided against it. It isn’t your fault. There isn’t any blame it just is.

I have to live with Mom’s last words to me. “I’m sorry I fucked up your life so much”. Those were her last words to me before she died. I wish they had been “I love you”.

When I think of everything I put the two of you through I feel sick. The phone calls in the middle of the night from the Hospital or Police, never knowing which one it would be. I’m ashamed. Remembering Mom’s face as I got my stomach pumped or wrists stitched up again but at the time I was only thinking of my pain. It’s still all consuming.

When I was younger I learned to hide. Family functions were difficult for me so I would be in my room reading. Eventually when people noticed I forced a smile and some polite conversation for as long as I could. I was the “Great Pretender” until I started drinking.

Alcohol  made me happy most of the time. The times it didn’t were usually triggered by an event or comment. It didn’t take much to push my buttons and the people I surrounded myself with at the time knew this. It took too long to get away from them and by the time I did the damage had been done. Alcohol still made me happy but also weary of people like them. I also always felt I had to prove something. I had to prove I was worthy, pretty, wanted, belonged, and not a mistake. I knew only I could change how I felt about myself but for some reason my brain still won’t let me accept it. I’m not sure it ever will.

Dad, your daughter is still here. I love you. I live with you and make sure you take care of yourself. I make sure you are eating and eating the correct food for dialysis. I’m the one who is here when you need someone just like when I quit drinking and you watched movies with me. I’m the kid who loves animals and helps you with your birds. No one else would help you give 150 injections into the necks of your pigeons so they don’t get sick. I do it because you have always been there for me and I love you. You are cranky and stubborn and sometimes I need a break but I’m sure you feel the same about me. I offered you a kidney but you wouldn’t take it. Now I don’t have one to give and might be looking for one myself. We both know who didn’t step up to the plate on either occasion. She’s my sister and I love her but I don’t have to like her. I know that upsets you too.

I’m doing the best I can right now. I tried to explain how sick I am physically and how it interferes with my medications but I’m tired of explaining myself and apologizing. So this is the last one. I’m sorry and I love you more than anything. (How we used to be 1991)13417502_10210195569352556_7373379057936580003_n

MY FATHER’S SHOES

Today my Dad said “Think about what it would be like if you were in my shoes”. This angered me. I’m finding myself angry too much lately because I’m not absorbing my medications.

I bit my tongue for as long as I could then said “I would’ve loved to be in your shoes. You had a woman who love and adored you for years. You got to make the choice to have a family, own your own home, travel, laugh with your wife. Yes, there were bad times but the good times I watched from a distance were real and beautiful. She worshipped you and talked about you all the time. Why? Because you were the only man in her entire life that was good to her. You think I never wanted any of that for myself?”.

I think I shocked my Dad for the first time in a long time. For once he heard me. He feels better about his life and I feel worse about mine than I already did. 13901354_10210665207453215_2448191949000437152_n

WHEN YOUR OWN DOCTOR IS FRUSTRATED WITH YOU WHAT DO YOU DO?

The last time I went to my Psychiatrist in February, he was visibly frustrated with me. It was obvious he was out of options. He threw names of medications at me that “we” could try. The problem is that they were all chemically related to previous medications I’ve tried.

I couldn’t understand how he thought Trintellix would be that much different than Brintellix. There is a difference, there’s a T instead of a B. How is it that I know the components of these medications and he doesn’t? How is it that he still can’t tell me how Viibryd is broken down in the bodies system and if I’m getting the full benefit of it? Is having 1 kidney and an extremely compromised immune system preventing the antidepressant from reaching my brain? How is it that no one knows? This isn’t curing Cancer or figuring out the molecular structure of a foreign matter we recovered from another planet! (If you believe in such things)

Sorry. So, towards the end of our 12 minutes he suggests that if I’m that miserable “Why don’t I try taking myself off my medication to see what happens”. This kind of pisses me off as everything does these days.

I reached a point a few weeks ago where I didn’t care anymore and started to wean myself off of my meds. I then tried to change Primary Care Doctors. That didn’t go well at all.

People who don’t know me and read on a piece of paper my diagnoses tend to assume that I am less than intelligent. This is a poor mistake on their part. If from the beginning you talk to me like I am a child or I can’t hear you than we are going to have a problem. If you don’t listen to what I have to say and dismiss me we are going to have a bigger problem.

Conversion Disorder and Bipolar Disorder can work in mysterious ways. There are times where I will be so frightened I will curl up in the fetal position rocking my body back and forth while crying uncontrollably for hours. Time stops during these episodes. Then there are times where a red veil of rage clouds my eyes. I spew out whatever is in my head and I often don’t remember what I’ve said I usually find myself curled up crying knowing that I was out of control but that’s about it.

I WANT TO BE VERY CLEAR. I HAVE NEVER PHYSICALLY HURT ANYONE DURING THESE EPISODES THEY ARE ONLY EPISODES OF SAYING WHAT’S ON MY MIND WHICH I NEVER DO AND STICKING UP FOR MYSELF WHICH I NEVER DO.

It isn’t easy living like this and I have tried so many Doctors, medications, therapy, ECT, you name it without much relief. Now it’s different because my physical health is being compromised. I can’t travel, I have no energy for anything. All I know is that my Blood Pressure is really low. You think the Primary Care Doctor could’ve started with that? Bloodwork? A urine test? Nope. So plan B is to have my stents changed which the Primary Care Doctor couldn’t understand why I had stents in the first place.

She insisted that I must have had “Kidney Stones”. I said “No, I didn’t have Kidney Stones. Most people with Kidney Stones do not get Bilateral Ureteral Thickening like I have.” She didn’t like my answer. She saw on my chart that I had a Hematologist and asked “Why do you need a Hematologist?” I told her that my White Blood Cell Count was extremely low years ago so I was sent to him and he found a lot of abnormalities that usually go with Celiac Disease and when I went into Kidney Failure they were trying to rule out a specific disease that involves a genetic sequence so he also worked on that. I couldn’t understand why the more I spoke the more she looked like she smelled shit.

If I said Black she came back with White. After 20 minutes of this and my stutter becoming worse and worse I had enough. I remember standing and telling her that this was the end of our appointment. She told me I had to wait to do an Exit interview/paperwork. I said “This is my Exit”. And I walked out. This is what a degree from Harvard and an internship at one of the most prestigious Hospitals has gotten me. The second Doctor to treat me like garbage with the same credentials.

I don’t understand why it’s so hard. This Doctor’s nurse had more empathy and human kindness than anyone I’ve met in a long time. Why is it so hard to find that? Are Doctor’s sick of seeing Mentally Ill patients? Or is it patients that actually have a clue about their own care? I know there are Doctors that dislike patients who go on the Internet and learn about what their illness. But guess what? I’d be dead if I didn’t learn what I could and be my own advocate. No one is going to fight for this “crazy” person’s life except me.

Just some new earrings I made.

I THINK WHAT YOU NEED TO DO….

If there is one thing that bothers me more than anything, it’s when someone tells me what they think I need to do to “get better”. What I hear is “you’re not trying hard enough”. I then start to think that people around me are thinking that I don’t want to get better. That doesn’t bother me it breaks me.

I remember a time when my Dad would come home from work and give us “foot rides”. He had to wear steel toed boots to work and he was on his feet for 10 hours a day. He didn’t care how tired he was when he got home, I would wrap myself around one leg and my sister around the other. My Dad would then drag us around the house. After he would give us Rollo’s that he bought from work everyday just for us.

I remember the tire swing he made us in the backyard. I spent a lot of time by myself watching squirrels, chipmunks, butterflies and every other kind of creature while my Dad did yard work. I remember watching my Mom cook and feeling so calm as I watched her hands move.

If anyone thinks that I wouldn’t want those feelings back than they have bigger problems than I do.

Everyone pushes me to go to Group Therapy. What people who have never been to Group Therapy don’t understand is that where I live everyone is put together. Your group could have someone similar to you or a group largely made up of people that can’t function as well. I’ve been to many different Group Meetings in my area. Something scary always happened. Maybe I bring bad luck. The last straw was the man who pulled out a butcher knife and held it to a staff member’s throat. I was standing next to him and was told not to move. It was fun when the S.W.A.T. team showed up pointing their guns at him and me!

Good thing I’ve been peppered sprayed before because that also happened at another Group Therapy session. I wasn’t sprayed I just got the residual effects. So much fun! I think after about Group number 30 I quit. It’s worse when you’re hospitalized. Not only is there mentally ill but they also put you with people who are detoxing. This has happened twice.

Stop telling me what you think I need to do to “get better” and try listening to me or, now I know this idea is out there but how about spending some time with me? Or you could stop ignoring me and judging everything I do and say.

Just a suggestion that will never be seen or heard.