The Future of Me

When I think I might need a kidney transplant or dialysis as a 43 year old single woman I’m scared and feel I wasted so much time.

I spent so much time being wasted that the years flew by. When I stopped and looked around me I realized everyone else in my peer group was married with children. I was still going to bars and concerts.

So I never had children or an actual relationship where the other person stays for more than one night. I thought I loved a few but they didn’t love me.

Now it might be too late for anything. Things I always wanted to do. I always wanted to meet Steven Tyler. I’ve met famous people and they don’t ever really live up to the expectation. But I don’t care, I’ve always wanted to meet Mr. Tyler. His lyrics have always been with me. I’ve always wanted to travel. Warm places because I’m always cold now. Living in Rhode Island with Kidney Disease sucks. Places like New Orleans, Australia, Ireland, Greece, at one time Belize then I watched the TV series Mad Dogs and changed my mind. I would want to visit places with beautiful animals and waterfalls. It’s a lot to ask for. I would like to make jewelry again and laugh. I want to laugh with my sister again.

WORTHLESS AND WEAK

I feel the same way I used to feel when I was younger. Without my Bipolar Medications working it all comes back. I’m back to the worthless piece of shit I always thought I was. Only this time I’m skinny instead of fat. I still hear their insults in my head though. “Fat f*cking c*nt”, “Fat cow”, “Hope you never get pregnant because no one would ever know” (the entire room laughs). Elephant noises being made at me at parties, being spit on, and then when they were drunk enough and no one was around it would be the opposite and I couldn’t say anything. I always kept my mouth shut. Most of the time. Until I started drinking heavily and could say what I actually felt. I kind of miss that. I hate this quivering, cowardly, scared, person I am all the time.

When you are constantly having every bad, horrible thing ever done or said to you in your lifetime spinning through your head it’s hard to live.

There are days of manicness mixed in. Days I think I know things and I’m smart. But something or someone always reminds me I’m not. Days I spend large amounts of money on things I don’t need when I have a pile of medical bills. I think of drinking more and more lately. I feel I might not have much time left and I should just have fun while I can. No one is helping me. No one wants to help me. A person shouldn’t have a body temperature of 93 degrees and NOT be in the hospital. Yet I was dismissed. I shouldn’t be down to 119 pounds at 5’6″. I shouldn’t have blurry vision, trouble breathing, red urine, pain in my sides and back, headaches that are from pressure or fluid in my brain, and fatigue while taking Adderall. It’s all in black and white in my file. Things I was never told. I have Diabetes and Hypothyroidism. No one ever told me. No one has told me YET! I went to 2 new Doctors that asked “So I see you Type 2 Diabetes and Hypothyroidism.” My response was “I do?”. Nice of someone to tell me.

I am constantly obsessing over the past. The people I hurt. Did I do enough for my mom when she was alive? Did she know I loved her more than anything in the world? Was my brother in law right? Do I not take ownership of the things I’ve done. Am I just lazy? Did I deserve everything that has happened to me? Do I deserve to live? I’ve actually been told by a few people that I do not. Then I was locked in a Bathroom with a knife and told to kill myself. I was extremely drunk at the time. I believed what they were saying. So I started cutting. Of course I didn’t do it the right way and they laughed at me. One said “You can’t even do that right you stupid bitch”. I believed all of this. Sometimes 20 years later I still do.

Sometimes I wake up and think I’m back at that place and I’m drunk. It is the most horrible feeling in the world. I’m so relieved when I realize I’m home and I don’t live like that anymore. It was worse than I’ll ever really admit.

If my family knew everything I don’t know how they would react. What they do know is sometimes used against me in arguments. That hurts. I drank to feel like a “normal” person. I drank so I could talk to people, so I didn’t always feel like I was outside looking in. To throw it in my face after almost 7 years of sobriety is hurtful.

I don’t know how all of this is going to go. I’m trying to hang in there. I did call a Nephrologist today and called my Urologist to tell them how crappy Mass General went. So I’m still fighting. That has to say something.

Where’s House When You Need Him?

I went to the Urology Specialist at Mass General yesterday. It was a complete waste of time. I have never been so disgusted in my life. Even my twin sister was crying and ready to slap a bitch.

The Dr. had no idea why I was there even though all of my info had been sent to her ahead of time. She didn’t know how to work their new computer system. As she has a scan of my kidneys and bladder on the screen where I can see and she can see, she is making noises to herself and comments. Comments like the following “What a mess!, Oh my God!, What is this?”. I was getting nervous at this point.

She said “You have a LOT going on here. The doctors on your case are very good and did everything I would’ve done. You should have a biopsy where they go through your back though.” I asked her if that was something she would do. She said she wouldn’t take over my case without starting from the beginning and re-doing all the tests and biopsies they had already done. I told her Medicare probably wouldn’t cover that because they had already been done and she said I would have to get pre-approval. No mention of the many financial aid programs Mass General offers. Plus if she thought my doctors did everything right why did she have to re-do everything? I never got an answer for that.

She told me I should see a Nephrologist. I asked if I should see one around Mass General? She said it didn’t matter. She didn’t even try to recommend one. At this point I’m crying. I told her I’m tired and in pain and I really would like to know what’s going on. She said “Of course you are I would be too. You’ve been in Kidney Failure twice, your kidneys are not working the way they should, the right one is barely working. You have to get this figured out before more permanent damage is done.” DUH! That’s why I was there!!!

So it was a wasted trip where I’m worse off than I was before. I have no idea where to go for help when no one wants to help me. It’s even worse because it’s interfering with my Bipolar meds and I’m a mess. I don’t know what to do. I feel like giving up but I can’t.

You’re Dismissed!

I’m going to discuss several things because I haven’t had access to my laptop for a few days.

The first is I’m going to Mass General tomorrow to try to find out why my kidneys keep shutting down. I had called this Dr. on my own to set up an appointment because listed in her credentials as a specialty was “ureteral obstructions”. That is what I have it’s just no one know where, how, why, or what.

So when I call her office and explain to the woman on the phone what’s going on she says “Well, I don’t know if she can help you. She really specializes in kidney stones.” I said “What about the urteral obstructions?”. She said that really meant kidney stones. Even though kidney stones was listed as separate specialty. So I said ok I would continue my search. In the mean time my Urologist was searching for a specialist for me in Boston.

He came up with the same Dr. I had and called her. They booked an appointment for me. When he talked to the Dr. directly it was different.

Today I called to ask a question about a Blue Card they said I needed. The same woman I spoke to before answered. I told her I had been in a lot of pain in my sides and back and my temperature was running between 93 to 94 degrees. She said if I felt that bad I should go to my local emergency room. I tried to tell her the reason I was coming to Mass General was because no one in my state has been able to help me. She was trying to talk me out of coming to my appointment. I told her I would definitely be there.

Here I am alone, scared, confused, and again this woman is making me feel like I’m not going to the right Dr. or I’m not wanted. Part of this is probably due to my medications not working but I don’t think all of it is.

A body temp of 93 to 94 degrees means that there is organ failure. It’s extremely dangerous. I’m holding out one more day because I know I won’t get the answers here. Even my family agrees with me on that. This isn’t the first time I have had to deal with a Doctor’s staff that was rude or didn’t know what they were doing and all the time I blamed the Doctor. I wonder if they know what their staff says to potential patients? This Doctor has written published papers on the subject of “obscure ureteral obstructions” and she also teaches. Her credentials are impeccable. I’m sure she could at least point me in the right direction. Or maybe I’m just crazy like most people say and think I am.

I’ve had a hard time getting over the fight I had with my brother in law. I’m wondering if he was right. If I haven’t taken ownership of the things I’ve done in the past or even what I don’t do now. Maybe I am lazy not sick. Maybe I just make excuses. Maybe I didn’t do enough for my mom when she was dying. Maybe I deserve to be sick now as punishment for the things I’ve done. I have felt suicidal lately. I don’t have the balls to do it unless I’m drunk. I put a knife to my wrist and started cutting in front of my father the other day. I’m so ashamed for doing that to him. I felt so helpless and confused I didn’t know how to express it. I wanted the pain, grief, anger, loneliness, etc. to just end. I also just wanted someone to hug me and tell me it would be ok. No one did. I have to get it together.

Without my kidneys working my medications won’t work. Without my physical health I won’t my mental health. Something has to give. I can’t live like this. This isn’t living. Afraid of everything, crying all the time or having bouts of anger and lashing out at the nearest person. It isn’t good for anyone. I really hope tomorrow gives me some answers or at least some hope.

 

Losing It Big Time!

Lately my anger is coming out more often. I have no tolerance for anyone. Right now my dad is eating chips on the couch next to me. He’s yelling at the puppy and pushing him off the couch because the pup wants chips.

Guess who taught him to beg? That’s right folks! My dad! The same one who’s yelling at the dog now and pushing him off the couch. I told him when I first got the dog not to feed him from the table or anywhere else. I told him I only wanted him to have dog food. Yup. Those rules lasted about 2 weeks. When I was in the hospital my dad did what he wanted with the puppy. So now he begs and eats human food.

The dog also keeps me awake most of the night. He likes to wake up at 3:00 a.m. and chew the corners of my pillow. He also likes to lick the sheets for some weird reason. When I roll over and there is a wet spot I think he’s had an accident but it’s just from him licking. He licks my right side where my kidney is worse obsessively. He chews my hair. Oh! And I’m allergic to his dander to the point I wake up wheezing and gasping for breath. I have to run for my inhaler. One eye swells shut.

Over a month ago I suggested finding him another home. I have never, ever, given up an animal. But with my health declining I just can’t do it. My father said absolutely not. I said then you take care of him. My dad said fine I will. I’m still taking care of him. I love him, it isn’t his fault. I hope when they figure out why my Kidneys keep failing and I get better I can spend quality time with him. I can give him some exercise and training. Hee Hee I’m so dreaming. But you never know. I might get better.

What is Diversity?

The definition of diversity is: quality of being different or varied; range of difference. Diversify: make diverse or varied.

I’ve taken a look at the last  10 or so years of the winners for Best Picture at the Oscars. If you are looking for diversity in just the African American community there are about 2 winners in the past 10 years. But diversity isn’t just about one group of people, race, gender, economic class, etc. It’s supposed to be about the representation of us all.

I’m going to go through some of the past winners so maybe you can understand what I’m trying to say.

2014- Birdman: Ok not really much diversity and I would’ve voted for Whiplash anyway.

2013- 12 Years A Slave: Beautiful, extremely well acted movie dealing with slavery and being a free man. So there is diversity.

2012- Argo- I’m not sure on this one. I’m thinking there was little diversity but I didn’t watch it so I can’t really say.

2011- The Artist- Even though a silent film you had French actors, American actors, and a dog.

2010- The King’s Speech- Great Britain and North Ireland were represented in the film along with people who have disabilities. Stuttering can be very traumatizing, it effects your entire life. I should know.

2009- The Hurt Locker- American Soldiers and the people of Iraq. Dealing with having compassion one minute and knowing those same people are part of a group trying to kill you. Two diverse groups.

2008- Slumdog Millionaire- the life of a Mumbai teen living in poverty who’s given a way out.

2007- No Country For Old Men- Ok I really didn’t see much diversity here except the strange casting of Javier Bardem.

2006- The Departed- The Irish Mafia in South Boston.

2004- Crash- Interweaving stories about race and class.

2004- Million Dollar Baby- The dream of a poor young woman trying to break her family’s cycle of having babies and living on welfare by becoming a boxer.

So, I don’t know about you but I see a lot of diversity in these films. Is there an overwhelming amount of African American actors in any of these films? No. That isn’t what diversity is. If you want more diversity in Hollywood films you have to want it for all people. That IS diversity.

Boycotting anything never works. It isn’t the most mature route you could take. It’s like stamping your foot and throwing a temper tantrum. Never works.

Working with and meeting with writer’s and the decision makers could be a better idea. Let’s face it, if there isn’t a decent script then there is no work to help diversify the industry. I have read so many books that could’ve been made into films for African American actors and done well that have been ignored. Take Delicious Foods by James Hannaham for example. I definitely see that as a film. The book was brilliant. I suspect as I am typing this that something is in the works already.

Personally I’m tired of the same old same old year after year. I only get excited when there is a Quentin Tarantino film or someone similar because at least you know he’ll take you for a crazy, unique, well acted, ride.

The problem is with the backers, writers, directors, studio heads, decision makers, etc. Let’s face it they run the show. If it isn’t greenlit by them it doesn’t get made. Boycotting the Oscar’s and showing disrespect to your peers isn’t going to change that.

I Need To See Bipolar As Humorous?!?

I woke up too early today. When this happens my dad get’s irritated with me because I interrupt his “relaxation” time. I’m not sure what I’m supposed to do. Stay in my room and stare at the ceiling until an acceptable time arrives?

I was lying on the couch, not bothering anyone, when he asked “Who are we going to get today?”. I didn’t understand him at first so I asked him to repeat himself. He also said this in a sarcastic way. He repeated it. I asked him what he meant. He said “You know. With you we never how you are going to be when you wake up.” I said “I am Bipolar not Sybil, Dad.” This bothered me. He was so sarcastic about the entire thing.

When I talked to my sister she told me I needed to “lighten up” about what people said to me. She said so what if he was making a joke about my moods. She has mood swings too and her husband jokes about them. She said isn’t that why it’s called “Bipolar”.

Her “mood swings” are not anything like having Bipolar Disorder. Bipolar is going from one extreme to the other in my case. When I am depressed I am in a deep dark hole and my mind tells me that I do not deserve to be on this planet. I look in the mirror in see a piece of shit that has accomplished nothing and never will. Frequently I think about what it would it be like to die even though I try to occupy my brain so I don’t.

My manic episodes are no fun either. I want to crawl out of my skin. I want to party for days without sleeping but don’t. I go on spending sprees. I’m irritable and jumpy. My mind races from thought to thought. I do things without thinking of the consequences.

Bipolar Disorder is not funny to me. When you have been hospitalized, lost everything, treated like shit and allowed it there is no humor in that. I am a sensitive person. I always have been. If I had a nickel for every time someone told me I need to grow a “tougher skin” I would have millions of dollars. You know how I toughened my skin? I drank. I can’t and won’t do that anymore.

So too bad if I don’t see the “funny”, “humorous”, side of Bipolar Disorder. It has caused too much damage. I have caused too much damage. Deal with it. I have to.

Some Quotes I’ve Picked

Here are some quotes that have touched me in some way.

When You’re Unbelievable

While talking to my sister today I mentioned I might go to the ER at Mass General before my scheduled appointment with the specialist. She wanted to know why.

I told her my temperature had been running low, 95 to 96 degrees. When I looked it up it said when you have problems with your kidneys it’s an indicator of kidney failure. I also am having extreme headaches, pain in my sides that radiates to my back and pelvis. I’m having a hard time breathing also. I’ve lost more weight and everything has an odd taste to it. Even my toothpaste tastes salty. The more water I drink the worse the pain is.

My sister’s response to all this was that maybe my Conversion Disorder was causing me to think I was having all of these problems and that I shouldn’t be looking on the internet.

I was thinking maybe I needed to have my medical records tattooed on me so everyone would believe how serious my condition is. You don’t go into Kidney Failure 2 times in a couple of months for no reason. It says in my charts that “Life saving measures were taken” both times. Isn’t that enough to be taken seriously and to be believed by your loved ones?

It makes me angry, frustrated and sad. All you have to do is look at me to see that I’m seriously ill. Why would I make it up when there is documented evidence? I don’t understand the quickness to write everything off due to my mental illnesses.

I can’t get any peace here. I sleep for maybe 2 hours a night. I want to just go to hotel with a comfortable bed and sleep for 2 days. I don’t have the money of course.

I just want to know what’s going on and why. I want answers. The longer it goes on the more damage there is to my kidneys that can’t be reversed. I don’t even have the energy to clean myself up to go to the hospital. I can’t concentrate for long. I hope this is over soon.

Bill Clinton And Tremors

I was catching up on the “news” this morning when my I spotted this little gem “Bill Clinton’s Hand Tremble Raises Health Questions”. First, I think they meant “Tremor” not “Tremble”. Second, Mr. Clinton has said in the past his hands tremor as a simple condition of aging. He also denied having Parkinson’s Disease.

Let me tell you why this annoys me. This subject shouldn’t even be a headline and has nothing to do with the state of his cognitive skills. He’s still an intelligent, competent man.

As people get older, many develop tremors. There is a genetic disorder that happens to many called Essential Tremors. Essential Tremors typically involve the arms, hands, head, vocal chords, and sometimes other body parts during voluntary movements like eating, writing, or dressing. It’s often misdiagnosed as Parkinson’s Disease.

One of the main differences between the two is with Parkinson’s the tremor is usually constant even when the affected muscle is at rest. With Essential Tremors the tremor only worsens with your intent to use that affected muscle. The more stress, fatigue, low blood sugar, caffeine and other outside influences in your life you have the worse they will get.

I was diagnosed with Essential Tremors at the age of 37. That is extremely young for an Essential Tremors diagnosis. The other problem was no one else in my family had them.

A few years went by and I received another diagnosis of Conversion Disorder. Supposedly that was causing the tremors and a newly developed stutter.

Since these diagnoses my father who is 72 has started to have tremors. We never thought about his side of the family. His father had passed away at an early age so we wouldn’t have known if he would’ve developed tremors. Essential Tremors usually do not start until you are in your mid 60’s or later.

I have also learned that Celiac Disease, an autoimmune disease not an allergy, can cause early onset tremors. I have Celiac Disease. Which if people looked at it like an autoimmune disease NOT AN ALLERGY we would all be a lot better off.

I thing the media needs to educate itself before writing an article specifically dealing with medical issues. Do you not have to take journalism classes anymore to be hired by a well known publication? Rolling Stone did have Sean Penn write his story so I guess not.

So as not to be a hypocrite this is a blog. I do not get paid for my thoughts and opinions. No one takes what I say as fact because a well known publication is sponsoring me. I am not a journalist. I don’t know what I am. I do know I am sick and tired of the lying and scheming and self-righteousness I keep seeing everyday. So I ramble and spew until I feel better.