Category Archives: Advocacy

I Love Doctors Like I Love Colonoscopies

Yesterday I went to see my Psychiatrist for my usual 3 month visit. I had some issues to address with him about my file and the diagnostic codes. As soon as I asked I caused a panic.

I couldn’t get a word in. Finally I got as loud as I could and said ” I just want to know what I am, what I have, what is told to the review board!”. He stopped to look at me and said ” It doesn’t really matter if you are Bipolar I or II it matters how well you function and if I think you can handle the stress of working and you can’t”. I told him it does matter because Bipolar II is still seen as Bipolar Light or Soft by Disability and even other people that have Bipolar Disorder.

His response was that I don’t fit the Bipolar I criteria because I haven’t had a manic episode that involved hospitalization due to full blown mania with hallucinations, voices, etc. I have never read that to be the criteria. Only that you have to have had at least one manic episode lasting more than 48-72 hours.

He also said it was Medicare doing the coding and that he was putting in all the info on me. I find this hard to believe when I downloaded copies of my records and it wasn’t there.

I have some decisions to make. He once again asked me how I was doing on the Brintellex when we stopped it 3 visits ago. It might be time for a change and someone with fresh eyes.

My Psychiatrist is About To Be Tested!

I have an appointment with my Psychiatrist on 11/11/15. Things are going to be different this time. I’m going to make a list of everything I need to ask him and everything he needs to do. I’ll try to get my sister to help me. lol If she answers her phone. If the things on my list are not done or addressed than I will find another Doctor.

The problem I’m having is when I look on the Medicare website where you can download your records, I see what he’s putting in my file and what he’s charging Medicare.

Medicare is over charged by 99% of doctors. There are fewer and fewer doctors taking Medicare in my State because they feel they don’t get compensated enough and it’s a pain in the ass. So the one’s that do pad the bill. I’m not going to say anything about that. If I do it will get around to other doctor’s in the system and they will not take me as a patient.

The fact that he copies and pastes every visit I DO have a problem with. This was what almost cost me my Disability. If I hadn’t had a lawyer to point it out to the judge I would’ve lost. I thought he stopped doing it. He hasn’t.

Every visit says the same thing Bipolar II.

This is wrong. I am Bipolar I, I also have Conversion Disorder, General Anxiety, Social Phobia, and someone added Catatonia which I have no idea what that is even about. None of these appear in my file.

So when I go up for review and the board looks at my file all they will see is the incorrect diagnosis of Bipolar II.

I have to figure out a way to explain this without stuttering and getting upset. I don’t want to offend him. He really isn’t a bad Doctor he just hates paperwork and the record keeping part. He’s told me so himself. But lately he’s been off his game as a Doctor also. Asking how I’m doing on a medication that I discontinued 2 visits ago and is on the screen in front of him. Or it should be. Something is different with him. If I get the same feeling on the 11th than it’s time to go.

The problem is where? We all know a good Psychiatrist is hard to find let alone one that takes your insurance.

I wish my Hematologist could be my Psychiatrist and all my other Doctors rolled into one. He’s the only one I like. The only one to encourage me to advocate for myself and learn about what I’m diagnosed with. He also encourages questions. NONE of my other doctors do that. He’s rare. Maybe he’ll adopt me.

The point is make sure your doctor is putting the correct info in your file and explains things to you. If they don’t like you asking questions then there is something wrong and try to find someone else. Good luck we need it.

Some Updates and Important Info You Should Know!

Some of you may not know that the Dr. you see is hooked up to a community of doctors all in different specialties and fields. Say you go to your Allergy doctor and you disagree on your course of treatment. He in turn puts in your chart (electronically) that you are a difficult patient or a “problem” patient. Now you need to see a Gynecologist. A few are referred to you but you do not hear back from them. You wonder why. It may be because when they looked up your insurance or name your visit with the Allergy doctor popped up. They in turn do not want to deal with a “problem” patient. You have just been “blackballed”. Some of the Doctors in that network probably won’t see you. You rocked the boat, you questioned what they were doing. The doctors who are open minded and want you to ask questions will take you on. The others won’t.

You might be thinking that I’m a Conspiracy Theorist. I never have been until now. It started when I questioned a Urologist about why my future procedures HAD to be done at a specific hospital when he had privileges at other hospitals in the area. It was in my chart that I am diagnosed as Bipolar. When he read this his attitude changed dramatically.

I tried to explain why I didn’t feel comfortable at that hospital. He cut me off. He told me if I wanted to live and have him as my doctor that is where it would be done. His berating me went on for 10 minutes. In that time I felt like I had done something wrong. I felt I was being punished for something but I didn’t know what. At the end of the appointment I humiliated myself by crying and begging for his forgiveness. His attitude changed again to one of almost cockiness. Of course I would see things his way.

The day of my multiple biopsies I was scared and had no one with me. He announced to everyone who would be in the room that I was “A demanding one! Whoee! You’ve never seen someone SO demanding!”. The head of Anesthesia replied “She won’t be doing that in MY HOSPITAL!” And they took me away. So began my label as a “problem patient”.

What he never took the time to find out is that my mother died there. She died a horrific death in that hospital. My last stay there was filled with neglect and bullying. Nurses who made fun of my Bipolar Disorder and said it would be a “great way to lose weight and maybe they should pretend to have it”. This was said in front of me, like I didn’t exist. My sister heard it and was ready to punch someone out. They also with held my Bipolar medications. For no reason except their pharmacy didn’t carry it.

So the doctors under this network won’t take me as a patient. Luckily I have 1 well respected doctor who’s reputation is well known. He has told me from the beginning to advocate for myself. He also says if any Doctor tells you different, RUN! I have taken that advice seriously. I am a human being, I deserve respect, I am scared. What are you going to do about it?

Being Your Own Advocate!

When it became clear to me and the people around me that I could no longer hold a full time job I applied for Disability. It was a long, degrading process. If I hadn’t had a lawyer that specialized in Bipolar Disorder and Conversion Disorder I never would have gotten it. It was a long drawn out process. I finally had to go before a judge. He wasn’t a pleasant man. When he started to ask me questions and I stuttered and had trouble finding the correct words he said “What? Didn’t you take your meds today?”.  It was at that point I started crying. I could see my father sitting in the corner of the room with his hands in a fist and a look of rage in his eyes. My lawyer at that point spoke up and told him the facts. My lawyer had spoken on the Senate floor about Conversion Disorder and other disorders like it. He knew his stuff. He was disgusted with the judge. There was another problem. My Psychiatrist was just copying the same thing in my record every time I went. So it looked like I had 1 diagnosis and not the actual several that I really had. My lawyer brought this up also. The judge hesitantly gave it to me.

Most people get a review in about 5 years. Not me. I get a review every 2 years or so. Even though my doctor and other doctors have said that I have actually declined and not improved. They say I will continue to either decline or stay where I am. Where I am isn’t great.

I checked my records recently with Medicare. My Psychiatrist is doing it again. Cut and Paste. It has one diagnosis listed. This interferes with Disability. When they look at my records and see the one diagnosis it makes it worse for me. He has admitted to me personally that he hates paperwork. He has complained about the amount of paperwork he has had to do for me.

I started working on the books at the age of 14. I always worked. Starting at 14 it was every summer 7 to 3:30 p.m at the jewelry factory. I didn’t go to the beach or hang out with friends, I worked. At 16 during the school year I managed a Hallmark store at night after school. In the summer it was the factory and the Hallmark store. I then started working for a Video Rental Chain. I worked up to 60 hours a week for 13 years. What I’m saying is I paid into the system. People think you are just looking for a free ride. When I started a new career as a hair stylist and my symptoms became worse I had no choice. Clients have a tendency to back away from you when your hands shake with a pair of scissors in them. I couldn’t work with the public anymore. I was having meltdowns in the closet everyday.

I’ve decided to look into a new doctor. If mine can’t take the time to properly keep an account of my records than why should I go to him? I also noticed that he bills them for an hour of Psychotherapy when I’m only there for 10 minutes.

The point of all this is to check your records or files. Make sure your doctor is being accurate. You deserve that.

Where I’ve Been~ Almost Dead

I finally went to the Emergency Room Tuesday after not feeling well for awhile. I knew in the back of my mind that something serious was going on when my feet started swelling 3 times their usual size. The intense pain in my head and neck worried me too. I still didn’t think it was going to be that bad or subconsciously maybe I had given up.

They took me in right away and took blood samples. I was exhausted and slept on and off while waiting. I told no one I was going and drove myself.

When a burly Irish doctor came over and sat down he took my hand. He looked upset, sad even. I felt bad for him. I didn’t know it was because he had bad news for me and all of the ER staff was upset. He said ” you need to call your family, it’s serious. Your creatinine level is 10 a normal level is a 1. You’re in Renal Failure and we don’t know why. We have to do surgery immediately.”

I was scared. I couldn’t get my sister to answer her phone and my dad wasn’t picking up either. They were telling me I could die and I had no one answering me. Another Dr. came in and asked about life saving measures, if I wanted them or not. I didn’t know. Finally my sister called back and came right away. They put stents in so urine could go from my kidneys to my bladder, which it had not been doing.

I was released late yesterday with no answers. I have to have many tests to figure out why this happened. The doctors that put the stents in said they had only seen damage like that in cases of TB. I don’t have TB. So the search is on.

The hospital I was at is not the best. On my 3rd day they lost access to water in all capacities. No flushing toilets, washing hands, nothing. I was being forced to urinate every 20 minutes to a half hour. My room did not have a bathroom in it. Nurses were irritated when I had to go because the IV had to be unplugged. If they ignored me I unplugged it myself and went to the bathroom across the hall. Then one of them got mad at me for doing this. I had no control after the surgery, when I had to go, I had to go.

The Bipolar Issue- A group of nurses were discussing me. One said that she was “going to pretend to be Bipolar so she could lose 120 pounds” and then they all laughed.

They didn’t give me 2 of my Bipolar meds because they didn’t have them 1 was Adderall and I’m pretty sure they had it. The other meds were generics but not like anything I had ever seen.

There were quite a few comments made about my Bipolar diagnosis and it left me feeling even more scared and alone. To make fun of a patient who is in a serious health crisis is like kicking a puppy. I was and still am disgusted.

The good part is that I want to get healthy and BE HAPPY no matter what. No more pity parties. It’s time to move on and move forward.

Taking Charge of Your Health!

Lately I have been feeling horrendous. And that’s putting it mildly. I continue to see my Psychiatrist but have not been to my Primary Care doctor in over a year. My last experience there wasn’t pleasant so I just haven’t been back. I have a lot of physical problems, it’s ridiculous to put my life at risk because one person ignored me and talked to me like I was challenged IQ wise. The problem was I advocated for myself and some doctors do not like this. They feel that they are being challenged or blamed. I also praised one of her colleagues that she had sent me to. He is a Hematologist. He was kind and encouraged me to learn everything I could, he was also impressed at how much I already knew. He made me feel like I wasn’t imagining things for a change. Her demeanor changed as soon as I talked about him.

I mentioned I had not had a period in several months and that I might be starting menopause. She just said “No you’re too young”. I told her women with Celiac start preparing for menopause sometimes at 35. No answer. I mentioned I thought I had a sinus infection. She just looked up from her computer and said “No, I don’t think so.” At this point I was angry so my response was ” Snot is supposed to be Army Green then?”. She didn’t respond. I’ve had enough sinus infections to know when I have one. I was so disappointed because until this appointment I liked her. Then today happened.

I looked up my medical records online. On one of the lab reports it said I have Type II Diabetes. No one told me. This was at least 2 years ago. It would’ve been nice to know. Lately my vision has been blurry, my feet are 3 times their normal size, my hands are swollen too, headaches, extreme constipation, weight loss, numbness in my legs and feet, nausea, stomach pain and a lot of other stuff. It’s been scary. I don’t know what’s what. What’s Celiac related, Bipolar related, med related, and now Diabetes related. In addition no one has addressed the swelling in my brain. The report that says it should be monitored frequently but hasn’t been since 2011.

So it’s time to put up or shut up. The Plan. New doctors. None of them are working for me and I have been with them for years. The Bipolar and Conversion Disorder is worse. My physical health is worse than my father’s and he’s in the last stage of kidney failure and on dialysis. I stumble like a drunk, can’t speak normally, cry at the drop of a hat, shake, spend most of my time in the bathroom, have maybe 1 to 3 hours a day where I don’t want to throw up, my head feels like it’s in a vice 24/7. I’m miserable. There are things I want/need/have to do. Enough is enough. I can’t be afraid anymore of what might be found. It can’t be any worse this. I need to be able to help my dad like he’s helped me. I want to travel. I want to LIVE.

I Think I’m Doing Bipolar Wrong

I came across some articles recently. I didn’t like them one bit. In fact I loathed them. They made Bipolar Disorder sound as if it was like Dorothy in The Wizard of Oz. All I had to do was click my heels together and I would be fine. More than fine in fact. As long as I learned the advantages of my Bipolar symptoms and understood them to a point where I could turn them on and off at will BECAUSE I understood them so deeply. But this does take effort! Each week you will have to focus on different subjects and coping tools. Tufts is doing this program or trying to now. It is based on Wooton’s Bipolar IN Order Theory. You embrace being Bipolar and the many gifts it has given you.

Let me stop now before I make myself sick. I apologize for only seeing Bipolar Disorder as a taker not a giver. Am I creative in some ways? Yes. Does it make up for the 265 days out of the year that I spend in a depression? No. It doesn’t make up for lost friends and family who find it exhausting to be around me either. Am I more observant? Yes. This leads to problems also. I am one of the the lucky few to have dual diagnoses. Making it harder to understand and treat me.

Would you feel blessed if you woke up with tears on your face and didn’t even know why? Almost every morning. And when you feel like a burden to everyone around you, is that a gift? I can’t control my stutter or my hands shaking but I am supposed to be able to learn to control Bipolar symptoms? I rarely know what day of the week it is. My memory is selective. It selects random images of things I don’t want to see or know anymore. I keep a dictionary and notebook next to me at all times. This is a great gift for my father who asks me to look up words for him.

So no I do not see Bipolar as a gift. Unless you put it in the same category as herpes, the gift that keeps on giving. I was functioning at one time, I had 2 jobs worked 70 hours a week and still had a social life. I was also drinking myself to death to maintain that normalcy. I know for a fact that I can’t follow this program. If this makes me weak so be it. I know my limitations and what will set me back. I cannot control my “symptoms”. If I could I would be out of this hole. I see no beauty in depression only darkness. Maybe my version of Bipolar comes with brutal honesty and not beautiful darkness.

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