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.

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.

 

DRINKING II:CREATING A MONSTER

It’s everywhere you go isn’t it? Alcohol. Everyone on the planet seems to be able to handle a drink or two except you. How many times have you bargained with yourself while out with friends? I used to tell my best friend W that I was “only” going to have 2 beers and 2 shots and then she needed to cut me off. She would always say “OK”. She was taller but I outweighed her by a 100 pounds at the time and could get mean when I drank. She knew this, I knew this. We both knew she wasn’t going to stop me. She would try to make sure I didn’t hurt myself but that’s all she could do.

I can’t tell how many people tried to blame her for my problems over the years. Why didn’t she stop me? Why didn’t she tell my family? It wasn’t her job. And she was the ONLY ONE WHO SAW THE PAIN INSIDE OF ME. No one else did. She knew pretty much all of the things I had been through the last 20 years. She loves me and cares about me but it’s difficult to know someone is destroying themselves but to also know the agony they carry inside.

The first 10 years of my alcoholism were brutal. It isn’t easy hanging around mostly men that are ex-cons and either alcoholics, drug addicts or both. The first guy I was ever with was 6’3″, tan complexion (he was French and Italian), and had 2 teardrop tattoos under his eye. I was 17 and an idiot. He had spent 6 years inside a Florida prison. Yes he was very attractive, no he had no job or money. The first time we were together he played a Metallica song and lit Black candles. I should’ve run immediately. He taught me a lot though. How to get out of a dumpster on my own, how to punch a guy in the jaw and knock out his tooth (him), how to give a false alibi, and how to deal with extreme humiliation. Not to mention he had an ex-wife and a toddler who I paid child support for once or twice.

He wasn’t even the worst of them. But most of you know that story. They were hard years. I drank everyday. I would be driving home at 3 a.m. puking into my sweatshirt. Then wake up at 6 a.m. to be at work for 7 a.m. During this time period my behavior grew worse while I was drinking and I would cut myself or swallow a bottle of pills. Off to the hospital you go! They don’t fix you or help you, they babysit you. After several more years of this my brain decided “You’re not very good at this killing yourself thing so instead your going to date (f*ck) every asshole you meet in the hope he’ll do it for you”. That almost worked on several occasions. Some I don’t remember. Some I thought I could handle and fight back a little bit. I didn’t know how vulnerable I had become. I didn’t realize how empty I was.

I have to say that I had good parents and I love both of them very much. I was born with something wrong inside of me. I felt it at an early age. The loneliness in a room filled with people, an aching feeling in my chest I couldn’t name, a feeling like I didn’t belong here. When I say “here” I mean on this Planet. I’m a twin and I often felt that I was a mistake. My mother didn’t know she was having twins. I still feel I wasn’t meant to be here.

My mother’s death and getting a DUI helped me to seek the resources I needed. I knew there was something more going on than drinking. With the family history of Mental Illness and Alcoholism how could there not be? It took a year to get a diagnosis of Bipolar Disorder. Then I was sent to other specialists because my cognitive skills were questionable. I had just spent the last 20 years pickling my brain I’m not sure what they expected. My liver was also enlarged and towards the end of my drinking I was vomiting blood. One idiot who did the cognitive testing said to me “Congratulations. You have the brain of an 82 alcoholic man.” Why a man? I had no idea. Which he just proved.

The DUI was something I was pissed at. I hadn’t been driving the car. It was stalled in the middle of the road from earlier, the keys weren’t in the ignition, and me being me was trying to push it while it was still in Park. I know driving while under the influence is wrong. That’s why the car was stuck there. I had gotten to the end of W’s street, decided I was too drunk to drive, went to do a U-Turn when the car stalled. The Officer on the scene was not helpful. I’m not saying he should’ve been nice. It was right after my mom had passed away, I was crying outside the vehicle when he pulled up. He patted me down. I’m pretty sure I wasn’t carrying anything in my bra or vagina in one of the richest areas in my state. Took my shoes, coat, and blazer from me so all I had on was a sheer tank top and black jeans. Took the tiny pillow and the toilet paper out of their one cell and sat down to watch me all night. No female officers, no other male officers, just him to watch me pee and shiver in my see through tank top.

When the judge read the report and my lawyer pointed out that I hadn’t been driving, the keys were not in the ignition, and the officer had given me an PARKING TICKET ON TOP OF EVERYTHING he immediately dismissed it. The state had me sign a waiver saying I wouldn’t sue. How can you give someone a Parking Ticket and DUI at the same time? You can’t Park and Drive. The judge didn’t like some of the other things he had heard either.

The one thing the Judge was concerned about was my Breathalyzer Test. I blew a .30 a few hours after the arrest. The judge knew that these were not the numbers of someone who has an occasional drink. He told my lawyer to get me help or therapy because if he saw me again it wouldn’t be the same outcome. I didn’t go to a program. I cut ties with the people I drank with. I only spoke to W on the phone or we went for lunch or the mall. Mostly I stayed home or spent time with my dad and sister.

The Bipolar Diagnosis is harder. There is no cure. You can’t just ignore one thing to make it better. I never know how I will be until I wake up. I still have that aching hole in my soul that never gets better. I am always in a constant state of grief and sorrow. Losing my mom made it worse. When I would get like this she would hold my face in her hands and tell me she loved me. No one does that now. No one touches me at all now.

This is why the Doctors worry anesthesia. When I’m under all that pain is gone and maybe I even see my mom. Who knows? All I know is that my brain doesn’t want to leave where it is. And yet I have to continue to go under anesthesia every 4 to 5 months for the rest of my life. Sometimes I look forward to it. I don’t know where I belong and I don’t where I’ll go if something happens to my dad. I’ve talked myself into depression. lol It’s what I’m good at.100_0463 (4)

This is a drinking picture. I post it so you know. I was 270 pounds at the time I am 135 now. I also no longer have the blond hair. After that beer I’ll probably have 6 shots of Jager or Patron and a few more beers.

DENIS LEARY AND BINGE WATCHING

I have been a Denis Leary fan since first seeing him on MTV’s Remote Control. In case you’re wondering I’m 43 and female. My comedic taste is that of an 8 year old boy or 21 year old guy. I try to keep it concealed. My best friend of over 25 years is probably the only one who laughs at the same things I do. It’s even stranger watching a younger version of Christie Brinkley do it. Specifically if I make her snort laugh.

Back to Mr. Leary. I recently binge watched all the episodes of Rescue Me. I think there might have been 93 of them. That’s a lot of Leary. I’m an alcoholic in what I like to call Remission. I am not drinking now, I do not plan on drinking now, I do not plan on drinking in the future. I am not stupid enough to say I will never ever drink again. I’ve seen people that have been in a program for over 20 years start drinking again. I’ve seen them start and end their lives that way. I’ll discuss this topic further at another time.

I think Rescue Me was one of the most underrated shows in the history of television. The writing was filled with wit and warped humor one minute, grief and redemption the next. The show tackled many subjects that other shows were not. They did it in a way your average Joe could relate to. Family, Alcoholism, Work, Sexuality, Grief, Divorce, I’m pretty sure I’m forgetting some topics but that’s my fault. I would often find myself with tears on my face not realizing I had been crying.

I could relate to the alcoholism, family, AA situations, grief and pain. I couldn’t relate to his character being loved by a significant other or having children. But I could still imagine what it would feel like. 20 years of drinking causes people to give up on you and to not trust you.

Binge watching television shows like this has almost taken the place of drinking. I’ve always watched movies and tv. I also used to read at least one book a day. Since I went into kidney failure I haven’t been able to read. I can’t focus on the story, it doesn’t move fast enough or my brain doesn’t. My vision has slowly become worse. Someday I’ll try again.

I do have to be careful when I’m binge watching certain shows. I’m easily influenced by certain characters without even knowing it. Case in point, The Sopranos.

A couple of years ago I had been binge watching The Sopranos. I guess my attitude had changed to the point where my sister (of course) had asked my dad if he noticed. He had noticed that my language was more colorful which was rare for me and the way I carried myself was different.

My sister thought about it and remembered me saying I had been watching The Sopranos. She invited me to her house for lunch, sat me down and said “Cut the shit Tony.”. I started laughing. She was serious. It hit me like a ton of bricks that I had been acting like Tony Soprano without the killing people part. We had just been at the mall where a woman fell into a rack of clothes with a baby strapped to her back. I kept walking and my sister stopped to help. A few days before I had given a dog CPR. My sister pointed out how Tony had more emotion for little ducks than humans and that’s how I was. She wasn’t wrong but this wasn’t anything new. It was just more obvious. She jokingly called me Tony for awhile.

Yesterday I had to go for pre-admissions testing for the surgery to change the stents that keep my one kidney working. I guess there was an issue with the anesthesia last time. The nurse was asking ridiculous questions so I was giving her ridiculous answers. She was laughing so hard at one point she had tears. Unfortunately this made her late for her next person. When the woman up front came in to tell her she was running late the nurse said “This one is a firecracker! Sarcastic, but I love it!”. She then told me I might not want to answer the questions like that the day of surgery because Anesthesiologists have no sense of humor.

While walking to my car which was parked in Boston even though the Hospital is in Fall River I realized who I was acting like. Denis Leary. I was sarcastic and somewhat cocky. All I needed was a cigarette hanging out of the corner of my mouth and I would’ve been all set. PLEASE I am in no way saying that I am as funny as Mr. Leary. I’m saying how easily influenced I am by other people’s persona’s and moods. A movie or television show done correctly stays with me and changes me in some small way. Whether this is good or bad doesn’t matter. What matters is that there are still entertainers and writers capable of doing this.

So keep doing what you do Mr. Leary even if I am banned from every operating room in New England. It’s the Bipolar or the Conversion Disorder or whatever they want to come up with next because without people like you to entertain me and keep my mind busy I probably wouldn’t be here.

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RESCUE ME: Denis Leary as Tommy Gavin on RESCUE ME airing Tuesday, July 13 on FX. CR: Jeff Neira / FX

WEARY

I’m tired of reading the same clichés, the same self-help mantras over and over. I’m beginning to feel like an angry zombie. I’d like to know why I can’t be left alone. I never hurt anyone and I don’t drink. The one thing people can’t handle is seeing another person’s pain and tears.

They really do not want to witness this if they feel they have had a part in any of it. Guilt. I don’t blame anyone for my illnesses. It boils down to simple genetics and the brain. During this short time I’ve of writing I’ve tried to call my sister twice. No response. I was going to start the conversation by asking how she was for a change. I was going to cater to her needs. Why do I always feel the need to do this? Why am I begging someone to love me? Someone who is putting conditions on our relationship as twin sisters? You know what I really think about it? F*ck her. Sorry, but I’m getting worn out here, my patience is very thin.

There is a place I was thinking of going to. I would be interested in the testing and assessment. I would even be interested in one on one talk therapy. I’m worried about my insurance. My psychiatrist bills me for 70 minutes of Psychotherapy he doesn’t do. So I wonder what my insurance will do.

ATTACK OF THE KILLER GALLBLADDER!

For at least the last 15 years I have had trouble with my Gallbladder. My Primary Care Doctor continuously said that it didn’t need to come out.

There were times where my Gallbladder caused me serious problems. The one I remember most is the Rehearsal Dinner for my sister’s Wedding. It was held at an Irish Bar but for some reason had a Pirate theme. I have no clue why. I believe it was the Irish stew that did me in. Although I wasn’t practicing sobriety at the time I never, ever, drank around my parents. I knew it wasn’t from drinking, there was a lot of garlic in that stew though!

So that night I stayed with her in a fancy mansion where the wedding was to be held. At 2:00 a.m. it started. The sweat was pouring off of me, I woke up nauseous and ran for the bathroom. When this happens I usually have some Ginger Ale or Coke to settle my stomach and after an hour I’m fine.

I woke my sister up. She wasn’t happy. Her words to me were “This isn’t about you, tomorrow is my day. Go back to sleep!”. I couldn’t find any soda so I spent the night on the bathroom floor.

Over the years I’ve had many Gallbladder attacks. I learned what to avoid and when I was diagnosed with Celiac Disease the attacks became less frequent. I don’t know what happened 3 days ago but I must have pissed someone off somewhere.

I have never been in so much pain in my entire life. From the middle of my breastbone going down under my right ribcage was a pain I can’t even describe. I tried everything that usually works. It got to a point I couldn’t breathe. Then the electricity went out. It was 90 degrees. I’m also on antibiotics for a bladder infection from my kidney stents and wasn’t feeling great to begin with. I went 2 days like this. Finally I went to the E.R. around midnight last night.

I might as well have gone to the 24/hour Emergency Veterinarians up the street. They took blood (everything was normal), took x-rays (you can’t see gallstones/gallbladder on an x-ray), they brought in a portable Ultrasound. I though finally! Two Doctors and an Ultrasound technician couldn’t find my friggin’ Gallbladder!!!! They ran that wand everywhere. At one point I think I said “Seriously?”. Even I knew where they should’ve been. So they abandoned ship and told me I would have to have a CAT scan. FOUR HOURS go by and another person comes to take more blood when they already said my bloodwork was fine. I hadn’t seen a nurse or doctor in that four hours. I refused her taking more blood and said I was leaving. I started taking off all the tape and sticky round things, I took off the blood pressure cuff and the thing they put on your finger. Usually when this even falls off by accident someone comes to check. Not one single person came and my machine was going off like crazy. I knew the Phlebotomist hadn’t told them yet because I was watching her.

Ten minutes later as I started to remove my IV she told them and a nurse came in. The nurse got the Doctor and I told him I wanted to leave.

I was still in some pain but not as bad. When I arrived home I looked up “How to ease Gallbladder pain”. Every site said the same. Apple Cider Vinegar. You can mix some in with Apple Juice. The acid in the vinegar stops the Liver from making cholesterol that forms most gallstones and dissolves the ones already there.

I didn’t have Apple Cider Vinegar, I only had distilled white vinegar, but I was desperate and drank 2 tablespoons of it. I immediately starting to burp/belch which I hadn’t been able to do, not even with a bottle of TUMS. It’s been about 5 1/2 hours with no pain so far. I could cry with relief. I hope it lasts.

Normally I wouldn’t disrespect someone’s profession like that. I was in serious agony and I didn’t even get a blanket or a kind word. I know it was a Saturday night but they were not that busy. For 2 Doctor’s and a Technician to fail at finding my Gallbladder and continuously ask me if I was sure I still had one was just ludicrous. They have ALL MY RECORDS THERE. I might forget some things but I think I would remember having something removed.

The degree of medical care in this country continues to get worse. I can’t blame the Doctor’s 100%. There have been cutbacks to a dangerous fault. There simply are not enough good people working and the people working are there for too many hours and have lost their compassion. When you lose that why bother showing up at all?