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.

WHAT THE HELL IS WRONG WITH ME?!

Bipolar Disorder, Borderline Personality Disorder, Conversion Disorder, cognitive issues from all of the above or related to CKD and Celiac Disease. No one knows the answers. It’s April 2017 and I can’t find Doctors in 3 States to give me a concrete diagnosis on anything. Personally I find this frustrating and irritating. I’m expected to be polite as they talk down to me and smile as they give me another lame answer like “idiopathic”. I think the definition of “idiopathic” should be “because I’m an idiot and I don’t know”.

Let’s take my recent surgery. I have stents that keep the thin tubes open going from your bladder to your kidneys. I went into what they call “Life Threatening Kidney Failure” twice a few years ago. I had no symptoms except for the one day that I woke up with feet that were swollen 4 times their normal size. I wasn’t going to go to the ER but my mom passed away from congestive heart failure and I knew swelling like this wasn’t normal. I drove myself to the ER. There wasn’t a Doctor in the State that could explain why the tubes had thickened to the point that urine had backed up into my kidneys, damaging one beyond repair and leaving the other working at 70%.

A few weeks had passed and “The Team” thought they would see what happened if they took out the stents. Guess what? I went into Kidney Failure again. So now I have to go under anesthesia and have a breathing tube every 4-6 months to have them changed.

This time a Doctor I didn’t know came in and asked me some questions. “When you bend your head back does your neck hurt?” Yes. “Do you feel dizzy or off balance when you do this too?” Yes. “When you close your eyes in the shower to wash your hair do you lose your balance?” Yes. “Hmm.” Then he walked away. I have no idea who he was.

The Doctor who does my surgeries called my Dad after and left a message on what he thought was my Dad’s cell phone but it was mine. He said the kidney that works at 70% is very enlarged but they don’t know why. He then told him it wasn’t a big deal and not to worry. I wasn’t told any of this and it is a big deal. No one was concerned about my low blood pressure or low heart rate either. I told them that my body temperature is odd too. It’s between 93-94 degrees and once in awhile it will jump to 98. Does any of this sound normal? I mention the eye doctor said I have extreme pressure behind my eyes not caused by Glaucoma and I need to have scan done and a Doctor tells me that a Mammogram is more important when I am literally flat chested and breast cancer is no where in my family.

I have a Psychiatrist who can’t decide if I’m Bipolar I or II, forgets to put Conversion Disorder in my chart and charges Medicare for a 30 minute wellness visit and a 45 minute Psychotherapy visit. Unless the Psychotherapy comes with Hypnotherapy I have no f*cking clue what he’s talking about because I see his face for a total of 12 minutes. I can’t say anything because I have Medicare and other Doctors won’t take me if they know I told about another Doctor padding the bill. Why? Because all of my Doctors do it.

No one cares that none of the medications work. I’m not their problem when I walk out that door. Unfortunately I’m my Dad’s problem because I live with him. They don’t care that I spend most of the day wondering why I’m here and the rest of the day thinking of how I can run away and be someone else. It isn’t only the Doctors. I’m not being dramatic. It’s my twin sister, my best friend, my aunt, my brother, and even my Dad. He thinks I don’t notice he finds a reason to leave the house as soon as I get up. If I get up too early he actually groans like I’ve done something wrong. Which in a way I have. I’ve survived.stigma-quote-18-1-healthyplace

DR. DREW (Part II)

Dr. Drew also did a show called “Loveline”. We, the public, are so lucky to have him. Let me remind you of his Credentials once again. He is a Board Certified Internist and Board Certified in Addiction Medicine. Got it? Great. Since these next topics kind of apply to me.

A caller to his show was inquiring about his girlfriend’s “conditions” which included endometriosis, interstitial cystitis, lactose intolerance, and “no stomach lining”.

Dr. Drew jumps in before the guy can get to his actual question. Dr. Drew “explains” that “These are what we call sort of functional disorders. Everything you mentioned, are things that actually aren’t discernably pathological. They’re what we call “garbage bag diagnoses” (actually they are referred to as idiopathic moron) when you can’t think of anything else, you go “Eh, it’s that” So then it makes me question why is she so somatically preoccupied that she’s visiting doctors all the time with pains and urinary symptoms and pelvic symptoms, and then that makes me wonder was she sexually abused growing up?”. The boyfriend never said the girlfriend was “preoccupied” or “visiting doctors all the time” he actually said she refuses to go most of the time. He did say there was some abuse earlier in her life.

Dr. Drew continued to explain that when people have unexplained pain, pelvic pain, it’s called somatoform dissociation. The only way her body, which was suffering during those early experiences, can tell it’s tale of “woe” is with pain. What she really needs is a trauma specialist not a Urologist. He finished with “Ya know what I’m saying?”.

ACTUALLY I DON’T CONSIDERING I HAVE A FORM OF SOMATOFORM DISORDER CALLED CONVERSION DISORDER. I HAD PELVIC PAIN, POLYCYSTIC OVARY DISEASE, AND CELIAC DISEASE. GUESS WHAT HAPPENED? I DIDN’T TAKE ANY OF IT SERIOUSLY BECAUSE MY DOCTOR DIDN’T. NOT UNTIL THE DAY MY FEET SWELLED 5 TIMES THEIR NORMAL SIZE AND I WAS DOWN TO 119 POUNDS AT 5’6″. I STILL THOUGHT IT WAS NOTHING BECAUSE I WAS TAUGHT NOT TO “BOTHER” DOCTORS. BUT SOMETHING MADE ME GO TO THE EMERGENCY ROOM. THE E.R. DOC LOOKED AT MY FEET THEN MY FACE AND RAN TO GET MY BLOOD RESULTS. I WAS OUT BY THE TIME HE CAME BACK. WHEN THEY BROUGHT ME BACK HE WAS CRYING. HE SAID I NEEDED TO CONTACT MY FAMILY AS SOON AS POSSIBLE OR GIVE HIM THE NUMBERS, THEN ASKED IF I WANTED TO SEE A PRIEST WHILE I COULD. I WAS IN RENAL FAILURE. BY THE END I LOST MY RIGHT KIDNEY AND PART OF MY LEFT. I AM CONSIDERED TO BE IN STAGE 3 CHRONIC KIDNEY DISEASE.

My Conversion Disorder had no part in my Kidney Failure except that is ALL the doctors saw on my chart. Wait! They also saw Bipolar Disorder. That equaled-YOU’RE DISMISSED!

I still go through this frequently. I literally have to wait until I am seriously ill before getting treatment. If I don’t I’m given the brush off. Just one of the extremely frustrating things.

I then have the opposite problem with some other doctors who take Medicare. They say I’m there for 130 minutes of Psychotherapy when I’m actually only there long enough to be handed my prescriptions, sometimes not even by them!

Other than that everything is peachy.