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.

ADDICTION AND MENTAL ILLNESS

If you ask a 100 Psychiatrists/Addiction Specialists which comes first addiction or mental illness, you will get 100 different complicated answers. It is complicated when you’re dealing with the brain. I can only say what I know and what I have witnessed.

There is addiction and mental illness on both sides of my family. Generations of it. This includes both of my parents. I never thought my father had any mental health problems until we started to talk about it in the last few years.

MY MENTAL ILLNESS AND ALCOHOLISM

I’ve said before that my memory isn’t the best so I’ll estimate and go by what my dad has told me and what I can remember.

When I was as young as 6 or 7 I felt out of place everywhere. My own Birthday parties filled my stomach with butterflies and I just wanted to hide. I shared these parties with my twin who I would watch as she laughed and enjoyed herself. I couldn’t understand why I didn’t feel the same as she did.

I have always been extremely sensitive to everything. I cried often and also had a quick temper that I took out on inanimate objects. I had a strong fear of abandonment and had a time with sleepovers or staying at another person’s house. I spent most of my time in my room reading.

At one point my mom talked to my dad about my behavior and suggested I see a doctor. He said that I would grow out of it and to leave me alone. I did spend time with my dad because we shared a passion for animals. I told my secrets to my mom.

Our family had a lot problems at one time. My brother was drinking and doing drugs. He had his own issues that my parents were not equipped to deal with. His father had been mentally ill and an alcoholic who committed suicide by driving his car into a cement barrier. My brother had a hard time accepting my dad and dealing with the secrets of his own father’s death.

My mother had several “nervous breakdowns” when I was younger and was hospitalized. She was never diagnosed or given medication. My father and mother both quit drinking when I was about 6. She would continue to have depressive episodes the rest of her life.

I started to dry heave before school everyday starting in Junior High. I never used the bathrooms and lunch was always difficult. My anxiety was out of control. I felt useless and invisible often. I had one friend. I was an observer of life. I started to sleep more and more.

In my later teens I would have times where I felt I had a thousand cups of coffee and I could do anything. I talked fast, started but never finished a million things, worked after school, and spent all the money I made.

At 16 I tried alcohol for the first time. My anxiety went away and I found I could talk to anyone and not care what they thought. I was funny and felt attractive. The pain on the inside was also gone. The feeling doesn’t last long so I had to keep drinking to feel normal.

My father admitted he drank because he had anxiety and a problem with being around groups of people. He still has anxiety.

I was diagnosed as Bipolar after 20 years of self medicating with alcohol. I’ve been sober 9 years. I wouldn’t have been able to stay sober without the help of anti-anxiety medication. No one should have to live with anxiety so bad they have ulcers at 17. Anxiety so bad it prevents them from doing normal activities. There was point I couldn’t go to the gas station by myself. That isn’t living.

As I’ve watched other people in my family it always seems like a mental health problem or a mental illness was the underlying factor in their drug or alcohol abuse.

When I did see doctors they only wanted to focus on the alcohol and never even thought there could be anything else going on. They had my family history of mental illness and still focused on the alcoholism. This needs to change. Both issues need to be treated together and doctors need to realize that the majority of addicts have a mental health issue. The ball is being dropped too many times and we are losing too many beautiful people.

How Today Went~ 1 Big Meltdown, 2 Threats, Binge Eating & Bad Driving

I went to bed early last night knowing I had to wake up by 4:45 a.m. to get ready to take my Dad to the V.A. Hospital to have Cataract Surgery.

I have no idea what medications were in my system when I woke up. I won’t know how any of that is really working for quite some time they now tell me. It seems that when you have Chronic Kidney Disease with kidney function now a little under 70% and Celiac Disease some of the medications can actually build up in your system and make your Bipolar worse.

The medications can cause a toxicity. Wasn’t it nice that no one told me this in two years?! So I have no clue what is going on in my body. I only know that the fast acting medications with a shorter “lifespan” are working. Dr. Drew will be excited to know that the only drugs I’m taking that work are Klonopin and Adderall. Hi, Dr. Drew! Still alive!

My father couldn’t remember how to get to the hospital even though he had been there twice before. My sister was driving so he wasn’t paying attention. I put Google Maps on my phone and was using that until he started barking directions at me over the woman’s voice. I tried to ask him how he knew if he couldn’t remember but he’s stubborn. When he says go left you go left even if it means into a fence. (Just kidding) I finally pulled over and asked him where he wanted me to go. The parking lot of the hospital was a mess and had no signs plus it was under construction. He made me park in the employee parking and we ran inside a building. There were several different buildings to pick from.

He was running from floor to floor and I couldn’t keep up. I was getting angry. He was treating me like an idiot, he knew I couldn’t keep up with him and he couldn’t hear me. I finally stopped and yelled some horrible things at him. He had brought me to the Psychiatric Floor where they admit patients. This was the straw that broke the camel’s back. He didn’t do it on purpose but in my mind at the time I was thinking he did to get back at me. I started to feel sick and tingly. I could smell the hospital smell and hear the patients. I was spinning out of control fast.

Next thing I knew I was slumped against a wall stuttering I guess what sounded like “Daddy”. I was crying too. I know only seconds had gone by but it felt like hours. A man who worked there reached me the same time as my dad did. I could hear my dad tell the man I was okay that I just needed to see him and calm down a little. He was right.

We made it to where he supposed to be but I couldn’t answer the nurse’s questions. I had to try to write my cell number down while my hands shook. I was ashamed for how I treated my dad earlier and how people looked at me. I was ashamed for losing control under stress and stuttering/shaking to the point my dad looked like he would cry.

I was stupid enough to call my sister for comfort. She instead threatened to have me committed. I guess this is going to be the new card she plays every time I do or say something she doesn’t like.

After his eye surgery I took my dad to dialysis and bought as much gluten free crap as I could find and ate it in his truck outside the dialysis center. Three and half hours later we came home. He told me how much he loves and appreciates me and understands that it’s hard for me even if he doesn’t show it. He blames himself. He also said not to listen to my sister because no one is taking me anywhere I don’t want to go. I love my dad.

Telling Your Story Isn’t Easy

I chose to publicly discuss what other people would normally hide or only tell their priest or Therapist. The reaction has ranged from positive to hateful. It’s also caused me to question myself many times and opened my eyes to just how much Stigma is attached to Mental Illness/Addiction/Suicide or anything related to these subjects.

But the Stigma, confusion and misinformation doesn’t stop with those who don’t have these issues. This I find even more appalling. When I’m attacked on Social Media by someone who has been through misdiagnosis, psychiatric hospitals, and receiving the wrong care or no care it angers me.

When I’m ganged up on and told I don’t know what I’m talking about I become furious.

THE TRIGGER

A person who follows me on Twitter is promoting a book about his personal struggle with a misdiagnosis of ADHD, medicated with 9 different Psychiatric Medications for over 3 years when the root cause was PTSD and Vision Issues.

After a recent musician’s suicide he wrote “I’ve got a ton of failures in my past- the difference is that I did NOT give up (even during a suicide attempt, which I stopped suddenly)”

One of his Followers wrote after that “Suffered from Depression for 11 months. Music and exercise, not tablets (pills) helped me snap out of it and determination”

I admit I’m not myself lately and I become irritated or angered easily. I am more sensitive than usual which if you knew me you would know this is extremely bad.

My responses were respectful. I didn’t want to appear incoherent or disrespectful. I replied to the first one “I’m happy that you have been strong enough or able to keep going. Unfortunately not everyone is the same and every illness is different.”

He asked me “Is there anything you are grateful for?” I can’t say I took that question well. I waited to respond and when I did I told him I was grateful for “My father and the people I’ve been able to help who are like me, who went too long without help, who suffer daily, the invisible ones.”

The other one I told “The reason there is so much Stigma surrounding Mental Health is because people say things like “snap out of it” when it isn’t possible with a Mental Illness like Bipolar or Schizophrenia”.

The reply was “You don’t know f*ck all about it. I did snap out of my depression! 5 weeks after snapping out of depression I was kidnapped by the authorities an injected by force!”

This is when I realized I was arguing with a person I probably was wasting my time arguing with. When I actually looked at their Twitter page and it said they were the Governor of Rowanwood and held many Amateur Boxing Championships (amateur was spelled wrong 3 times) I knew to let it go. This person was dealing with more than they probably knew about.

YOUR STORY

There comes a point where no one around you wants to hear about anything related to Mental Health, Medications, Doctors, Stigma, or how you feel. They become numb to your pain and tears and even annoyed. I can’t say I blame them. The problem is it never leaves my head. The stories linked to Bipolar and Alcoholism. The way I behaved and the consequences. The people I hurt and lost along the way. The people I lost when I stopped drinking and they found out I was diagnosed as Bipolar.

There’s also a physical component. I self medicated with alcohol for over 20 years. I have Celiac Disease but I didn’t find out until I stopped drinking. Every time I drank I was poisoning myself and doing permanent damage to my body. I mostly drank beer and shots. It took about 3 days to recover sometimes from a hangover. The last few years I was vomiting blood and my liver was enlarged. I damaged my brain, immune system, my white blood cell count is always too low, I’ve lost significant grey matter for my age, the list goes on. I did it to myself but there were also so many professionals who missed it all.

Now, I’m left feeling worse than I ever have.

WHAT I WANT TO DO

There are a few things I would like to do if it’s possible to feel better again.

I want to travel more. I love to travel to warm, sunny, beautiful places. Hopefully with wildlife.

I would like to try to speak publicly about my story to help others.

I want to take my Dad to local areas he’s never been to but I know he’ll enjoy.

I want to try to sell my jewelry.

I want to volunteer at a wildlife sanctuary.

I want to live instead of exist.

WHAT HAPPENS WHEN YOU’RE SCARED AND NO ONE IS THERE?

I’ve been having a harder time than usual and I’m not sure why. It could be 1 of 1,000 reasons. The problem is I’m too tired to find out. I’ve called 13 Gastroenterologists and none of them take Medicare.

I’m pretty sure a person isn’t supposed to have chronic diarrhea for more than 6 months. I have not 1 day without it. I also have a constant pain under the bottom of my right ribcage that radiates to my back. I can actually put my hand under my ribcage and massage the area to make it feel better.

There are times where the pain is excruciating and is from between both ribcages then goes along the entire right side. This is when I turn a lovely shade of green/grey, sometimes vomit, roll up in a ball and cry. I have gone to the ER during one these episodes but I went to the wrong ER. Three people with degrees couldn’t find my Gallbladder with the Ultrasound machine. Eight hours without a drink of water, anything for the pain, any other tests done, or seeing the Doctor again. So I got nothing.

Mother’s Day is coming up and as you can guess it isn’t my favorite. I don’t have my mom anymore and I’ll never be a mom.

My sister acted like everything was fine between us when she texted me but refuses to actually talk to me or see me in person.

I called my Auntie Lee two times and she never called me back. Usually she does but what if I talked too much last time or sounded unstable? What if she’s tired of me? Tired of listening to me complain? I try not to with her because I know she has her own problems and I like to listen to her voice. Sometimes I do it without knowing it. I stop myself as soon as I realize it. My best friend hasn’t called me in a long time. My dad keeps barking at me. He had Cataract Surgery on one eye and I had to help put 3 different eye drops in his eye.

My dad has extremely small eyes, doesn’t know his left from his right, can’t open his eyes wide, has eyebrows that grow down into his eyes, and is the most impatient person on the planet.

I trimmed his eyebrows for him. I’ve always had to put eye drops in for him but this time is different. He kept yelling at me and when I asked him to tip his head back he bent it forward! I almost thought he was doing it on purpose! My stomach hurt by the time I was done.

How I just want to hop on a plane and go somewhere different. I know your problems go with you but sometimes I think my Dad and my sister play a part in how I feel. I don’t think they do it on purpose but what they say and do has an impact on me.

Have I thought about suicide? In a way I suppose. I think more of disappearing to a place where I can be happy. A place where it’s sunny all the time and there’s a beach nearby. A place where I can take care of some animals or help other people take care of animals. A place where I’m healthy and when I smile I mean it. A place where people are happy to see me when I enter a room instead of sighing and ignoring me.

The World thinks people like me are not aware of what is going on around us. The truth is at times I’m too aware. At these times I remember that there is something different about me, I worry about how “different” I appear to people and if I’m embarrassing myself. Then I sit in my car and cry again. It’s easier to stay home.

HOW DID YOU KNOW?

I know I’ve mentioned the importance of music to me in previous posts. At times music can lift my mood at least a little bit. Other times music can speak for me when I physically can’t. I use music for road rage and when I’m sad or overwhelmed. I have also tried to use it to explain Bipolar and Addiction to family members who have trouble understanding. So many people think that it’s just their loved one who thinks and acts the way they do.

This is one of the biggest problems. The other problem is when you think you are the only one who thinks and acts the way you do. This feeling leaves you isolated and confused.

I’ve mentioned a few songs that have helped me understand having Bipolar Disorder. There is only one that after I watched it and really listened to the words that I felt I might break.

I couldn’t comprehend how anyone could’ve put into words exactly what was in my head. How could this person seem to know conversations I had with my mother? How did they know the exact words she had said to me? How I felt, what I said in my head. How was this possible?

I had been recently diagnosed when I heard the song “Hate Me”. I knew about Bipolar Disorder because I had family members with Bipolar Disorder and other Mental Illness. Realizing the connection between Addiction and a missed diagnosis really messed with me. I was angry and sad doesn’t begin to cover it. The many, many, Doctors that I talked to along with Therapists, didn’t understand. All of them believed if I tried hard enough and took the right medications I would be fine. That just isn’t true. It isn’t true for a large percentage of Bipolar patients.

I don’t think I would be here if I hadn’t stumbled upon that song. As soon as I heard “Dropping little reels of tape to remind me that I am all alone” I was frozen. “Playing movies in my head”. “In my sick way I want to thank you for holding my head up late at night, while I was busy waging wars on myself you were trying to stop the fight.” “You made me compliment myself when it was way too hard to take”. “And then I fell down yelling MAKE IT GO AWAY! Just make a smile come back and shine just like it used to be. And then she whispered “How can you do this to me?”.

I have reels of tape or movies that play over and over. I would come home so drunk I could barely stand up, sometimes bleeding from a fight or myself. My mom would stay with me the entire night. She would listen while I told her to leave me alone, I wasn’t worth it. I would beg her to let me go. She never did. I did push it too far at last and that’s when she said “How could you do this to me?”.

There is a part in the song that I wish she could’ve seen “I’m sober now for 3 whole months it’s one accomplishment that you helped me with. The one thing that always tore us apart is the one thing I won’t touch again”.

She never saw me attain sobriety, certainly not for 9 years. I hope wherever she is that she knows how important she is. Not many parents would’ve put up with what mine did. I’m lucky to have had my mom and to have my dad now.

Thank you Blue October, not only for “Hate Me” but for the hope you give with your other music. “Fear” is another song that has made an impact. I don’t know how you reach that point of peace but it makes me feel better for a brief time just watching the progression and video.98d9b34114cb1f3bfa8eddb1ae41a4aa

 

 

I’M NOT MISSING ANYTHING AND THANK YOU DAD FOR NEVER GIVING UP

I have to face some facts that I have subconsciously ignoring.

Travel will not fix any of my problems. Things will never be like they were 10 or 15 years ago. And as much as I hate to admit it, my medications are not working and have not been working since I went into Kidney Failure. I have been cycling more than Lance Armstrong ever did. The constant pity party I have for myself has to stop. I did it because no one else around me showed an empathy or compassion.

I can’t blame them. They had developed a callous as far as I was concerned. Dealing with someone who always has a problem for well over 20 years makes you so used to it that you stop hearing it or stop paying attention. I get that.

I don’t understand how no Doctor can give me an answer about my medications. When I ask if having 1 kidney instead of 2 can cause my medications to break down differently, no one knows. I get another answer of “Your 1 kidney works at 70% which is like having 2 working kidneys so it shouldn’t interfere with anything”. How does that make sense. You have 2 kidneys that work at 100% per kidney. You lose complete function in one and 30% in the other. If my math is like the doctor’s 70% in one is as good as 200% total. To me that is idiotic. It makes no sense.

I don’t want to try new medications. I know what they are. I have tried 2 of the newer ones and they didn’t agree with me. Most of the newer medications are a variation of the 2 I tried already but my Psychiatrist will insist I try them anyway. Why? Because his hands are tied and he receives a million sample packs from Pharmaceutical Reps that visit him constantly.

Truth be told I don’t know how my dad handles everything. Never knowing what I’m thinking or if I’m going to do something irrational or hurt myself. He’s the only one that is always here for me. I love him. I love him more than anything. I apologize every single day to him. It will never be enough.

But I am lucky. So many people have no one. Not one person. I at least have that and need to be thankful.