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.

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THE TROUBLE WITH EMOTIONS~IS IT BIPOLAR OR BORDERLINE PERSONALITY DISORDER?

The majority of people in the World can have something negative said to them and let it slide right off their backs. I’m not one of those people and I can’t remember a time when I was. Sometimes I question my diagnosis of Bipolar Disorder when I read more about Borderline Personality Disorder.

I appear to have symptoms of both but most Psychiatrists will say that you can’t have both.

The recent criteria for separating the two is to assess the emotional episodes from the person’s normal behavior. With Bipolar there are extreme emotional states uncharacteristic of the person during an asymptomatic time. Borderline Personality Disorder is an ever constant emotional state that’s present because it’s part of the person’s baseline personality.

If you understood all of that than we’re doing well. I’m still confused. I’m constantly in an emotional state of some kind. I never have an “ordinary” day. I haven’t for a very long time.

BIPOLAR DISORDER

To meet the criteria for a diagnosis of Bipolar Disorder a person must have at least one manic episode with high energy, self-confidence, impulsiveness, fast speech, and high risk behavior. When not manic impulse is not a problem. Emotional/mood swings can last a day or weeks. They are likely to occur without any trigger.

There are different types of Bipolar Disorder but most people spend much more time in a depressive episode rather than a manic one.

Depressive episodes leave the person feeling isolated, worthless, sad and empty.

When I was younger I had episodes of self-confidence, impulsiveness, fast speech and risky behavior. As I got older something changed and I began to only feel the isolation, emptiness, sadness and being worthless everyday.

BORDERLINE PERSONALITY DISORDER

In BPD sadness, irritability, anxiety, and emptiness are chronic states of being. Controlling behavior is an ongoing struggle. Overreacting on a regular basis, anxiety, anger and depression is your life.

Stress can cause intense emotional pain. Perception and memory become impaired and a sensitivity to separation or rejection.

  • Intense fear of abandonment (real or not)
  • Feeling empty like having a black hole inside you that can never be filled
  • Feeling non-existent
  • Episodes of numbness or zoning out
  • Spending Sprees
  • Promiscuous Sex
  • Substance Abuse
  • Suicide Attempts
  • Self Harm

ASSUMPTIONS BY PEOPLE WITH BPD

  • I must be loved by all the important people in my life at all times or else I’m worthless
  • Nobody cares about me as much as I care about them so I always lose everyone I care about despite the desperate things I try to do to stop them from leaving me.
  • When I am alone I become nobody and nothing.

I went into more detail with BPD because I’ve covered Bipolar Disorder many times. I could check off pretty much everything listed.

EXCEPT some traits I think I definitely don’t have.

  • See people as either all good or all bad
  • There are no gray areas
  • Have no empathy for other people
  • A large percentage have Narcissistic Personality Disorder

My niece was diagnose with Borderline Personality Disorder and I have definitely seen these traits in her. People with BPD can also be aggressive and she is. She is exactly like her father, my brother. He would never go to a Psychiatrist or admit there’s anything wrong. Several people in family have been diagnosed as Bipolar and fit the criteria but me? I’m an enigma in all things. I always blamed my fear of abandonment on my Grandfather because he forgot me at the car wash when I was around 5. It took him about an hour to figure it out. The place was on a busy street and I just stood there hugging a telephone pole and crying.

I am constantly berated for only remembering the negative events in my life. I’m not sure why I can’t remember the happier times. I’m pretty sure that there were some. I remember a few specific times but they were about making someone else happy like my mom.

Does it matter what my diagnosis is? I’ve been this way for the majority of my life, it’s only since a name has been attached that the people around me expect to see a metamorphosis. It isn’t going to happen. I’ve quit drinking for 9 years (I think), I don’t leave the house, I spend too much money, I’m not sleeping with random men or any for that matter, I’m doing the best I can for right now.

I do know that my attachment to my twin sister is unhealthy. I look for her approval too much. I think it’s because she was the most vocal about her disapproval and disgust with the way I was living my life. She really had no room to judge and never offered support only put downs. I’m at the point where I’m getting ready to do something drastic with our relationship. I love her but I can’t keep hitting my head on that same brick wall.

How Do You Find The Right Doctors When You’re Confused

Right now I seem to be getting worse and worse. I’ve been through every medication combination, therapy, and a round of ECT. I am at the point where I don’t care anymore.

Physically I’m not so great either. I’m hesitant to go to the Doctor because every single time I do she focuses on my getting a Mammogram and not what I’m telling her. She wasn’t concerned that they couldn’t find my Gallbladder at the Emergency Room and that I’ve had quite a few severe Gallbladder attacks. She wasn’t concerned that my eye Doctor wanted me to see my regular Doctor because of the pressure behind my eyes that she confirmed after 3 different tests isn’t Glaucoma. She isn’t concerned about the swelling in one area of my brain that was supposed to be monitored starting in 2011 and never was. All she’s concerned about is my getting a Mammogram on my nonexistant breasts.

Since I had breast reduction surgery years ago and then lost 135 pounds, I am flat chested. If there was even a rice sized lump I would know. No one in my family has ever had Breast Cancer. Bone Cancer, Prostate Cancer, Cervical Cancer, Lung Cancer, Leukemia, Strokes, Congestive Heart Failure, Gallbladders almost turning to mush, yes to all of these. My mom had Cervical and Lung Cancer but passed away from Congestive Heart Failure. My dad’s brother passed away from Leukemia when he was 9. The Kidney issues are on my dad’s side of the family but there’s no explanation for them.

I’m in Stage 3 Chronic Kidney Disease and have been having some symptoms that I’m a little scared about. At first I thought it was medication related. Now I’m not so sure.

The biggest problem is my Mental Health. My Doctor sucks. I’m too tired to go through what I had to go through just to find a half way decent one.

Then there’s the medical bills I owe.

Everything seems overwhelming. I can’t concentrate and I’m too tired. I know I’m complaining too much and everyone is sick of it. They don’t understand how badly I want to be left alone. No more Doctors, no more anything. I don’t feel any want, need, or urge to do or be anything. Nothing really makes me feel anything anymore except overwhelming sadness or sometimes anger at myself. I used to be able to push through times like this but it’s different now. Something has changed. I wish I knew what it was.

 

 

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.

Retroperitoneal Fibrosis~ Diagnosis

Some of you may know that in July I went into life threatening Kidney Failure. I really didn’t have any unusual symptoms except for swollen feet. It’s a good thing something inside of me said “go to the ER”. I was close to death.

The Doctors put stents in to keep my ureters open so that urine wouldn’t build up in my kidneys. They knew the problem was with my ureters but they didn’t know what or why. I had several biopsies that showed irregularities but no reason for Kidney Failure. At the time the Doctors were concentrating on my bladder and not really on my kidneys.

They didn’t find out until December that my kidneys had been damaged beyond repair. The right on was only functioning at 19% and the left was working too hard to make up the difference.

I went to several specialists with no answers. They all agreed there was an obstruction that had to be taken care of they just didn’t know where or how. One Doctor wanted to put tubes in my back going to my kidneys. I was scared. When the Doctors tried to take out the stents I would start to go into kidney failure within 24 hours.

The last Doctor I went to is a Nephrologist. He didn’t seem to take my condition seriously because he works with dialysis patients daily. He did come up with Retroperitoneal Fibrosis.

This is an autoimmune disorder where abnormal fiber like tissue occurs behind the membrane that lines the cavity of the abdomen. The growth spreads to affect the ureters or a mass forms and presses on the ureters causing a blockage.

The symptoms for this are:

  • pain in the lower back
  • pain in the abdomen
  • weight loss
  • fevers
  • anemia
  • loss of appetite
  • constipation

Sounds like the side effects of most of my Bipolar meds. Topamax is known to cause kidney stones and may contribute to the Fibrosis. I’ve been on it at a high dose for years. No one said anything. They still didn’t say anything after I went into kidney failure. No one questioned my medications.

It’s difficult to get a biopsy for Retroperitoneal Fibrosis. Most masses are Benign but can become malignant. There really isn’t much of a cure for me at this point. I probably will have to have stents for the rest of my life. There were questionable findings in my biopsies but I guess not enough to consider cancer even though everything I read says you should undergo extensive cancer screening including an entire body PET scan.

The Nephrologist never called to tell me any of this. He just wrote up his notes and I read them in my file. I called twice to get answers and was never called back.

All of this has been frustrating. No one really wants to help because it’s rare and complicated. I’m tired of all the tests. I decided to take a break from Doctors for a month or two. I need to reconsider what I want to do and if I should consult different people in the medical field. I feel like crap but at least I have something that makes sense.