Coping With Confusing And Scary Diagnoses

I’ve been told to stop saying “You don’t understand” by my twin sister and my dad. I’ve been told a lot by them lately and I’m reaching a boiling point. They don’t understand.

When you have lived most of your life thinking the way you are is just how it is, you’re supposed to suffer for some unknown reason. So you do and you get accustomed to it.

The day the wall crumbles isn’t really a relief. I didn’t know how to feel. I was in shock, I couldn’t think or speak. Then the anger came. Then the grief and feeling of loss. 20 plus years of my life wasted, countless Doctors seen who never picked up on a mental illness that I most likely started showing symptoms of by the time I was 10, I am now told.

I wasn’t really given any information on Bipolar Disorder just medication. I educated myself. I did get a second opinion to confirm the diagnosis. The state also did their own examination for Disability. I was still angry and my family didn’t want to talk about it. I do not do well in Therapy, I’ve been many, many, times. My brain shuts off as soon as I sit down. If they start with asking me to write where I see myself in 5 years forget it. If they want me to picture a stop sign during a stressful situation forget it. I don’t know why it’s so difficult for me.

When you’ve had several Doctors give you a diagnosis that is either life threatening or reveals you have had a traumatic experience you can’t remember and they want to use you as a teaching tool it’s rude. They could wait a day instead of hitting me with the bad news then asking if they could video tape my stuttering and tremors.

What I remember from past is pretty bad. To think that there is something worse scares me so when I was told about the type of Conversion Disorder I have I was devastated. The Doctor was filled with joy to have a live specimen for his students, colleagues and book. I did get a second opinion on this also and it was confirmed along with other disturbing results from a brain scan.

I’m having trouble coping with all of it. I fought with my sister again because she was crying and said “No one knows what it’s like to be tired all the time and in pain. I can’t do what I want with my kids and husband. I don’t want to live the rest of my life like this.” She was diagnosed with Chronic Fatigue Syndrome.

I have a life expectancy of maybe 57 because I have been diagnosed with Bipolar Disorder, Conversion Disorder, Chronic Kidney Disease Stage 3 (1 remaining kidney working at 68%), Celiac Disease (stays active), Autoimmune Diseases (related to Celiac), Chronic Low Heart Rate and Blood Pressure, Chronic Low White Blood Cells, Swelling in one part of my brain and a significant loss of white matter, Osteoporosis, and I’m 44 years old.

I’ve never been in love or a relationship. When I was young I thought I would have a house, husband, and children. Yes, I am responsible for my own actions. I did not know I would go into Menopause at 37 or that I had been dealing with a mental illness for many years. I chose to medicate myself with alcohol and spend time with people who hurt me physically and emotionally. I honestly believed I deserved it. I wouldn’t have had a child unless I was in a financially, mentally, stable situation so it is what it is.

Hearing my sister complain when she has a beautiful home, 2 gorgeous well behaved boys, a husband (I’ll keep my opinion to myself ), many friends, and is a stay at home mom, pissed me off. It’s always a contest with her. She can win. I give. If you can’t appreciate what you have you don’t deserve it. I’m done begging her to love me. I’m done begging people to “understand” what’s wrong with me.

If one more Doctor treats me indifferently or like I’m a moron I will not sit there quietly and take it. I’m done with that. I am a person with feelings and a brain that still works pretty well sometimes. I am not deaf, slow, or dangerous. I’m tired of being treated like dog shit you found on the bottom of your shoe.

Advertisements

SHARDS OF LIGHT COME FROM ALL THINGS

Sometimes I find relief from my Depression (it’s sometimes more than depression I just can’t explain it) in the strangest places or ways.

I love music so that’s always been a favorite but the one thing that makes me truly happy is sharing a song with another person and having love and understand it just as much as I do!

My mom was always the music person. My dad knew the music only because she played it all the time. I spend a lot of time with my dad. He takes care of me and I take care of him. Years ago I started to play certain songs for him that I thought he might like. One of the first was Johnny Cash’s version “Hurt”. My father would sit mesmerized by every word and image on the screen. He would make me play it for him over and over. The first few times I watched him trying to control his emotions. My mom had passed away not long before and I know he was thinking about the past and their lives together. It was good for him because he has such a hard time showing emotion. It wasn’t good for me. Watching him broke my heart, I would hide in the bathroom until it was over.

Some music he loved, some he didn’t. I recently played “Lost Prayer”, “Sleeping Dogs”, and “In This River” by Zakk Wylde for him. I told him before I started the videos that Zakk Wylde had been Ozzy Osbourne’s guitar player for many year’s, had a side band Black Label Society, and solo material. I also told him a very edited version of when I met Zakk Wylde and his wife Barbaranne at a show. My mother was still in the Hospital after having one of her lungs removed. They had just taken her out of the medically induced coma she had been in for almost 30 days.

At first I didn’t know who the woman was I was babbling too. It was years ago and I was drinking heavily. I knew she was pretty, caring, and really listened. I was introduced to her daughter. Anyway, I spent some time with Mr. Wylde’s wife and daughter and eventually my pickled brain figured out who they were. I met Zakk Wylde and was on their bus, they were all nicer than they had to be considering I was wasted and probably annoying as hell. But I’ll never forget the kindness that I needed so much at that time. I couldn’t lean on my friends at the time because most of them were from work, also none of them had gone through what I was going through at the time. It had taken a toll having to change my mom’s diapers and bedding because the staff was too busy or didn’t care, then working 45-50 hours a week. I was toast.

My 73 year old father listened to each song with as much attention as he’s capable of. lol When he had heard all 3 he looked at me and said “Why the hell was this guy playing guitar for Ozzy for so long with a voice like that? It has so much emotion and depth to it”. At this point I made fun of him for when he watched too much American Idol. But I completely agreed.

Something else that brings me happiness is finding beautiful art I didn’t know about. Hand blown glass is extremely complex. Dale Chihuly is a master at his craft. If you’ve been to the Bellagio in Vegas then you’ve seen his glasswork.

I also love when someone unexpectedly messages me that they wore one of my pieces of jewelry and received a ton of compliments! It was to an expensive Charity Event with many people so I was excited and inspired. This is the necklace that was worn. I didn’t remember making it! lol

 

“You Do Realize You’ve Always Been Different Right?”

One of my earliest memories is a Birthday Party for my twin sister and I. At the time you could have your Birthday Party at McDonald’s. I believe were around 9/10 years old.

At one point in the party I was outside. I remember standing outside the glass doors watching everyone laugh and fun with such ease. My twin seemed to be able to do this with no effort. I stood there watching for a long time. I thought “why can’t I be like them?”, “I want to go home”, “I can’t do this it’s too hard”. Even at that age I felt uncomfortable around people. I always felt like I was on the other side of that glass door watching other people live normal lives.

This feeling has never gone away. Not in 44 years. I just deal with it better now by pretending or isolating myself.

My mom was extremely close to one of her sister’s my Auntie Lee. I love my Auntie Lee. She does remind me a lot of my mom. It’s selfish but it’s one of the reasons I love to spend time with her. She is also the one other person who has accepted completely for who I am. Although like my mother she has no mental/verbal filter. lol

I  talked to her the other day and told her I’ve been having a hard time lately. I also mentioned that I’m having trouble making the smallest decisions like what underwear put on! She laughed at that one. (Her laugh makes me happy and breaks my heart at the same time. It’s exactly like my mom’s.) She did say to me “Honey, you’ve always been that way. I think you’re just now noticing it. You’ve always been different. You were always more sensitive then the other kids, you would rather be around the adults or by yourself, you didn’t talk much you just soaked up what everyone else said and did. You were always observant, way more than kids your age. But you were so quiet it was painful to watch”.

In a way I was relieved that someone had noticed something. I was also sad that some people could see those things in me and not do anything about it. It’s hard to explain to my Dad or my sister that I’ve had symptoms from an early age. It’s hard for them to understand how much I’ve been through. I don’t want pity, I just don’t want what I’ve been through to be dismissed. Years and years of suffering I can’t even describe. And now medications do not work.

When I was younger Manic Episodes were great. Tons of energy, babbling, spending sprees, getting dressed up and going out, taking off to wherever I wanted, my own version of a Rockstar  life. As I got older my Manic Episodes started to change. Specifically when I started to go through Menopause early. Now Manic meant irritability, anger and resentment. A feeling of being trapped in a cage. My Depressive Episodes started to last longer.

Bipolar Depression I suppose is different for everyone. I know I wouldn’t wish mine on my worse enemy. (Okay maybe I would) It’s the giant aching hole in my chest that’s filled with loss, grief, worthlessness, self loathing, guilt, shame, and just overwhelming sadness. There’s no light at the end of the tunnel. My brain plays memories of events I would rather not go over again constantly. Thoughts race around in my head about things I had no control over but somehow blame myself for anyway. And I keep asking why my twin sister doesn’t love me as much as I love her.

That is a big issue with me. When she told me she hosting Pre Party for Women’s March then going with a group of women I was happy for her. But she never once asked if I wanted to go. The march was focused on the Affordable Care Act and defunding Planned Parenthood. My sister brought up her “harassment” when she used to get her birth control pills from Planned Parenthood. The more she talked and the more I realized I wasn’t going to be invited, the angrier I became.

I wanted to scream at her. I wanted to ask her if she’s ever been called a “baby killer” at a party for everyone to hear. If she ever walked into an apartment for a party and saw hundreds of photocopied pictures of dead fetuses taped to the walls. The apartment owner thought it would be punishment because he had just become a Born Again Christian. I will remind you that this is the same person who sold drugs, slept with underage girls, and beat me to the point of unconsciousness. There were about 30 people already there. Instead of leaving like a normal person would do I sat down without any expression on my face and drank a pint of Firewater and about 16 beers. I wanted to ask her if she’s ever been called a “baby killer” and spit on by her best friend’s boyfriend. I accidentally punched him in the face. But it was pointless. I keep expecting people to understand things they are not capable of.

I go to the Psychiatrist on February 7th and I’m scared. Nothing has been working for a long time now. Only the fast acting medications like Adderall and Klonopin work. Everything else doesn’t. I’m tired of being an experiment. There has to be a better way. I’m getting worse. I leave the house once a month. I don’t want to do anything or go anywhere. I have no interest in anything. Something has to give.

WHAT HAPPENS WHEN YOU FIND OUT YOU ARE MENTALLY ILL?

You would think after a lifetime of knowing that something isn’t quite right with the way you react to the world, the way you behave around people, how you handle emotions, that finally being diagnosed with a mental illness or two would help. It doesn’t.

I just remember sitting there with a buzzing sound in my ears. I knew it was a strong possibility but I ignored it. I didn’t want it to be true. I didn’t want to be like my family members that everyone avoided and complained about. Even I was guilty of it.

The only thing that changed was I stopped drinking. Did I feel better inside? No. Not even after several years of medication trials, different therapies, and a round of ECT. It progresses. There are a 101 reasons why but it doesn’t matter. Even manic episodes leave more irritable and angry than anything. I become fueled with frustration and just want to run. But there is nowhere to go that I don’t take myself with me.

None of my Doctors have ever discussed the immense grief I still feel over my mother. It will be 9 years in February since she passed away and it still feels like yesterday. There are days I find myself on the bathroom floor sobbing into a towel and calling her name. I still have dreams of watching her die in front of me. I couldn’t look away. In retrospect they were doing CPR on a woman who was already dead. It was for our benefit. I wish they hadn’t. I wouldn’t have had to see the bloody foam coming out of her mouth and her lifeless eyes. The foam continued for hours after. My sister was spared seeing any of this.

I recently sent a text to my sister that was pretty mean. I always say I’m sorry after. I want more from her than she’s capable of giving. She has a family of her own and her own problems. I can’t expect her to deal with me too. I’m not her responsibility. I’m no one’s but my own. That’s a lonely feeling. All I have is my Dad who loves me unconditionally. I’m petrified of what will happen when he’s gone. Even with him here I feel alone.

I am confused a lot of the time. I have trouble making decisions. If left to my own devices I would sit in this house never leaving, never bathing, just sitting. The outside world grows less appealing everyday. I have less energy as the days go by. I lose more weight and lose interest in everything around me. I feel lost and don’t want to be found. I am at the bottom of the hole but this time I don’t care if I get out. The only thing I look forward to is my next kidney surgery and the anesthesia. I usually see my mom when I’m under. It’s becoming harder and harder for them to bring me out of the anesthesia. I know they’ve discussed this with my Psychiatrist. They think it has something to do with the Conversion Disorder. They’re afraid my brain won’t allow me to wake up during one of the surgeries but there is no other choice. I could care less either way.

This is how I feel most of the time. There are some okay days. Days where everything makes sense. There are just too few of them now. But I’ll keep going because it’s what my mom would’ve wanted. That has to be enough for now.

SOME POSITIVITY

Living with the negativity of Bipolar Disorder and other health problems, I try to find happiness where I can. It’s usually the smallest of things that make me smile.

When my box arrives from the company Birchbox it’s a little like Christmas. It’s filled with the newest, most expensive, hair, make-up, and perfume samples. You pay $10/month for 1 box per month. The sample sizes are usually large. I’ve had some last up to  6 months. I do have an obsession with products.

I also have an obsession with pens, colored pencils, watches, large statement earrings, flat irons, hair color, obscure boutique shops and gifts, Adult Coloring, Wildlife, and all kinds of subjects that no one else cares about. Example: The History of Russian Prison Tattoos is fascinating. One of my favorite movies is Eastern Promises, I’ve seen it several times. A naked Viggo doesn’t hurt either.

I bring this up because I actually left the house for the first time in more than a week. In case you don’t know, I do not understand how to handle a compliment. I’m working on it. But I was proud of myself this time. Four strangers complimented me on my hair. The color and the cut. I did both. I created the color and the cut. My eyes help. The color of my hair make my eyes appear a more turquoise blue. I still have a hard time accepting praise but when it’s something I’ve created it’s a little easier. My hair is Cherry Cola, the cut is Back to the 90’s, I cut it after I blow dry it then flat iron it so I can see the direction my hair grows. This is helpful because I have a cowlick in the front. lol

Looks like I’ll need all the help I can get. My dad’s visit with the doctor didn’t go well and he’s been lying about having money to pay bills. Ughhh!!! If you can answer this question correctly you win a free reading of my blog. Did my sister answer her phone? lol

1213161339.jpg

 

 

TRIP TO L.A.~A CHRISTMAS PRESENT TO MYSELF

I’m not a World Traveler by any means. But I have been to different areas of Florida, Virginia, Ohio, Massachusetts, Connecticut, New York, Maine, New Hampshire, and California.

Of all my trips L.A. remains my favorite. I should say West Hollywood. I felt like I was more at home than when I was actually home. I was 135 pounds heavier at the time and expected to feel uncomfortable. Instead I was treated like everyone else. It could have been the places I went to. We went to The Rainbow, The Roxy, and The Whisky. I felt comfortable at all of them but The Rainbow was my favorite.

I stayed at a boutique hotel The Chamberlain. I loved it. It had a pool on the roof and the rooms had an unique decor. The staff was friendly and helpful and it was in the perfect area.

The reason I want to take a trip soon is that I find myself disliking the Holidays more and more. I have not received a Christmas present since my mom passed away. I don’t really expect any but I give presents to the people I love anyway.

Every year it’s a battle. My dad wants to pretend that Thanksgiving and Christmas do not exist. I kind of feel the same. The rest of the family (my ex sister in law in particular) hounds him about going to a family member’s house for a celebration. This just upsets him more and I have to deal with it. Then they attack me and want me to force him. I’m not doing it.

I thought this year if I took a trip I could avoid all this. Maybe my sister would have to deal with my dad. Although that didn’t quite work out last time I took a trip. Someone is going to have to step up because life is short.

I don’t want to be morbid but my life expectancy with all of the combined physical and psychological problems I have isn’t exactly high. The fact I have one kidney and compromised autoimmune system isn’t great. I want to stuff while I still can. When I try to explain this I get the brush off. My family doesn’t want to believe me or they just don’t believe me.

I went so far as to show my dad my medical records. He couldn’t comprehend anything it was too much. My sister won’t even bother.

So I’m doing this for myself. That’s if I can work up the courage to actually do it.667087f7bf9fd5aacec140a4407260b8

COMPULSION AND GRIEF (Addiction and Mental Illness)

I watched Mourning Son last night. It wasn’t just a True Crime story about a woman’s death at the hands of a charming but controlling man. It was also the story of the aftermath. How loved ones are left to deal or not deal with that emptiness that is now part of their lives. Her son was 15 when she was murdered. The way he handled it may have benefited some but was at a great cost to him. He appeared to go out of his way to push the limits of his body and mind. He had a ravenous appetite for drugs, sex, and anything that put his own life in jeopardy. (This is my take on it and not a professionals) It may have started as a small itch you can’t quite reach or a weird feeling in your stomach that won’t go away. But it grows. I know this feeling well. Maybe in a different way or from different circumstances but pain is pain, grief is grief, and self loathing is self loathing.

I had my own experiences with violence and loss.

I recall my own dirty Hotel rooms watching people smoke crack or shoot up while my eyes were half closed, seeing everything from a haze of alcohol. I would wake up and often wonder where I was and what exactly had happened. Did I have to worry about an STD, pregnancy, or anything else? Where did the bruises come from and did I consent to it? And yes, one time waking up with 2 lovely tattoos I didn’t quite remember getting. It was possible because from 18 to 27 I really didn’t care either way what happened to me.

If I was still fairly sober I would let anger show through. There always came a point in the evening where I gave up and realized it’s pointless. I didn’t deserve better out of life. I still don’t think that most days. I do think I deserve to be treated as a human being. I’m not invisible and hate being treated as such. This happens often and sets off triggers I can’t control.

I become overwhelmed with the surge of feelings. This happens to the point where my head hurts. I will start stuttering and my hand tremors will become worse. I feel like throwing everything that’s in my path and destroying it. I want to self destruct. Anything to get rid of feeling this way.

I never learned to interact with people past the age of 16. My maturity level is that of a 16 year old. My sense of humor also that of a teenager. Everyone around me grew up, met their significant others, got married, had children, bought houses, and are now probably getting married for the second time.

I on the other hand have never really had a boyfriend, husband, children, lived on my own, owned or rented my own house, been on an actual date, or anything close to normal.

I have traveled some. I’ve hung out with various musicians that would be known if listed here. I’ve learned a lot about prison life in case anything happens to me. I got to visit L.A. with my bestfriend of over 30 years and hang out at The Rainbow. We actually had one of the best times ever. I wish I could convince her to go again. Maybe in a manic phase I’ll say f*ck it and book the trip myself. It might not be the same sober and older but it’s better than sitting here waiting to die.

I want to say to people who have not experienced it, a mother’s death is the most excruciating thing one can go through. When it isn’t expected or when you are lied to about it it’s even worse.

Even though my mom was 62 when she passed it was when I needed her the most. It was during this time that my Bipolar Disorder decided to really show itself. My mom had always known I was different. She would always hold me, rocking me back and forth while she sang an oldies song. She also held my face in her hands many times. She would take this time to say how much she loved me and that she thought I was beautiful. I miss her more with each day.

Everyone deals with trauma and loss in their own way. Some eat in excess, drink too much, do drugs, have sex with strangers, whatever will take the memories and pain away. I think I did everything I just listed. The important thing is to come back from it. Some of us may never come back for some reason unknown even to us. To those who do get to come back honor the people you’ve lost, show the vile assholes that have crossed our paths that our families are stronger than they will ever be. I don’t believe in forgiveness, it’s too easy. It has to be earned. Too many people want me to let things go. It’s difficult when you know the person who left you drowning in your own blood is a 7 minute car ride away enjoying a cold beer. It’s a slow process.mv5bmtaznji3ndiwmtleqtjeqwpwz15bbwu4mdqymzkzmtcx-_v1_sy1000_cr007071000_al_