BIRTHDAY

You would be 72 tomorrow depending on which document we went by. When you were here we celebrated your birthday for 3 days. You deserved it.

At one point you were a pregnant widow who held everything together for her child to be. You had plenty of practice after raising your brothers and sisters at a young age, sacrificing even a basic education. But you did it.

You had so much tragedy in your life. I’m sorry I never stopped to think about it while you were here.

You also had joy. You told me once that having children gave you joy and you wished you could’ve had more. You always had so much love to give.

You found your soulmate, who even now after nine years can’t believe you are gone. He will never love anyone else (those are his words).

And you did have 3 children. One of them still grieves for you daily. You were my Mom, my friend, the person I told my problems to. You listened. I don’t have that anymore. It’s lonely without you here.

The one thing I know for sure is that I was truly loved by you. I loved you more than anything. What I wouldn’t give for 10 more minutes to say the things I needed to say. I hope you know anyway.

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DO YOU HAVE TO TALK ABOUT IT ALL THE TIME?

I admit that I talk about my Mental and Physical Health often. I should probably say that I complain them often. If you have experienced what I have you might do the same. I don’t know.

I do know I take 3 pills in the morning and 4 pills at night for Bipolar Disorder/Conversion Disorder/Anxiety and I’m back to where I started when I was first diagnosed. No one can tell me why.

My kidney function is slowly getting worse. No one can tell me why.

No one can tell me if I am actually getting any of the benefits from my medications or if my kidney function is playing a part in the medications not working.

I now have continuous pain on my right side that feels like a hot sword being plunged through my back into the bottom of my ribs. No one knows why.

I have zero energy to brush my hair or get dressed. The thought of leaving the house frightens me more each day. If I bend my head below a certain level, then lift it, my heart races, I hear blood rushing in my ears and I lose my balance. I have fallen several times. No answers for this either except I have low blood pressure, a low heart rate, and no vitamin D. Supposedly there isn’t anything they can do. The only way for me get vitamin D is to have a procedure similar to chemo because it’s actually Vitamin D resistant Rickets which is an entire different problem. My white blood cell count is already low so they don’t want to do it. I have no clue.

If you had this many problems going on that no one could give you answers to wouldn’t you talk about it to your family? I don’t want them to fix me or give me the answers, I want them to try to understand what one day is like for me. It’s frustrating to feel depressed and sick every single day and have the people you love think that you want to be depressed and sick.

My best friend said to me the other day “D, I normally would never say this but you were happier when you were drinking and that isn’t saying much. But at least you left the house, talked to people, and laughed. I haven’t heard you laugh in about a year.” She was crying at the end. So was I.

CELIAC DISEASE (What You Think You Know But Don’t)

Celiac Disease is often misunderstood, even in the Medical Community. It’s difficult trying to explain to someone who should know why you can’t take a specific medication. The Pharmaceutical companies are regulated by the FDA and are supposed to disclose if they use Gluten as a binder in their medication. This isn’t a perfect world and not everyone will tell the truth. Generics are not under the same guidelines as Brand Name medications and are not monitored as closely by the FDA. These are facts.

CELIAC DISEASE

Celiac is a serious genetic autoimmune disorder where the ingestion of gluten leads to damage of the small intestine. When your small intestine is damaged nutrients can’t be absorbed.

Celiac has been linked to various other autoimmune disorders and cancers.

To get a true diagnosis you should have blood test first and then a biopsy. The biopsy is crucial.

A LONG LIST OF SYMPTOMS~ WHAT I HAVE WILL BE IN ITALICS

  • Bad breath
  • Gum Disease
  • Mouth Sores
  • Swollen/Bleeding Gums
  • Erosion of Tooth Enamel
  • Early Menopause
  • Swings in Hormone Levels
  • Heavy Painful Periods
  • Infertility
  • Swollen bladder/cervix
  • Acid Reflux
  • Bloating
  • Constipation
  • Diarrhea
  • Nausea
  • Loss of Appetite
  • Stomach Pain
  • Ataxia
  • Back Pain
  • Joint Pain/Stiffness/Swelling
  • Leg Cramps
  • Anemia
  • Deficient in Vitamin D
  • ADD
  • Anxiety
  • Brain Fog
  • Memory Loss
  • Asthma
  • Brittle Nails
  • Bruising
  • Dark circles under the eyes
  • Pale skin
  • Burning scalp
  • Dandruff
  • Eczema
  • Bladder Infections
  • Blurred Vision
  • Chills/Fever
  • Chronic Fatigue
  • Vertigo
  • Hair Loss
  • Headaches
  • Hypothyroidism
  • Seizures
  • Sinus Pressure
  • Irregular Heartbeat

Celiac can also cause you to have a low white blood cell count, arthritis and osteoporosis.

When you’ve been diagnosed with many other disorders/diseases and there’s an overlap of symptoms it’s extremely hard to know what’s causing what.

My twin also has Celiac and despite being Gluten Free like I am still suffers the symptoms. This happens to some people and it’s called Refractory Sprue. When this happens your chances of different types of cancer go up.

It’s difficult being a walking medical mystery. What do you do when no one has answers for you?¬†I know my medications have not been working and have said so for the past year. I’ve asked every doctor if it’s due to Celiac, Kidney Disease, Absorption Problems, and not one can answer me. I get worse every single day. My Dad is sick of hearing about it. My sister is sick of hearing about it and thinks I’m being dramatic and I just want attention. I don’t get attention. I’m ignored. If no one knows the answer they don’t want to deal with me. So I hide in my room and hope it all goes away. The pain is bad in my sides it’s like a hot poker constantly stabbing me in the side up to the bottom rib. This started after my last stent exchange almost like he didn’t hook it on right. I’m not saying a word. I’m done with it.

STENTS? KIDNEY FAILURE? CHRONIC KIDNEY DISEASE? URETERS?! (What Does It All Mean?)

I’ve written about having problems with my Kidneys before. This time I would like to give some in depth information. Yes, some of it sounds too clinical but it’s your body. If you don’t know your own body how are you to know when something isn’t right? We can’t always depend on the Medical Community to advocate for us or to have all the answers. So try to stick with me while I use words even I have not heard of.

Along the way I’ll inject some of my own results so maybe it will help to make sense.

YOUR KIDNEYS

Healthy kidneys are about the size of a computer mouse, but they do a lot of work. They filter all the blood in your body every 30 minutes, removing waste, toxins, and excess fluids.

Kidneys also help to control blood pressure, stimulate red blood cells, keep bones healthy and regulate chemicals in the blood essential to life.

A Renal Scan of my kidneys showed the left one was enlarged 6 times the normal size and my right kidney was the size of a grape.

HOW THINGS WORK

Urine collects into a part of the kidney called the renal pelvis. From the renal pelvis the urine travels down a narrow tube called a ureter (each side has one) into the bladder. The bladder slowly fills with urine and empties from the body through another small tube the urethra.

Both of my ureters had thickened blocking the travel of urine. This is rare in adult women unless there is trauma/injury involved. In my case there wasn’t. Usually doctors only see thickening in one ureter not both. They do see it in men with prostate cancer or some infants.

DAMAGE

Each kidney is made up of tiny filters called nephrons. Nephrons can become damaged by diabetes, high blood pressure or other causes and stop working. When this happens it’s called Chronic Kidney Disease, when not treated it can lead to Kidney Failure.

SIGNS AND SYMPTOMS

Early Chronic Kidney Disease really has no symptoms. It’s usually suspected when a routine urine test is done. If blood and protein are found in your urine your Doctor should look into the cause of it. If just one or the other is found they should still do further testing.

Other than diabetes and high blood pressure, kidney stones, blood clots, scar tissue from surgery, cancer, or a congenital blockage can also be the cause. If it isn’t treated as soon as possible the risk of permanent damage to your kidneys is high.

As CKD advances you may have pain in your sides and back. Abdominal pain and nausea are common too.

I had blood and protein in my urine for years. I also had pain in my sides and back. I was sent to 1 Urologist who performed 1 test and concluded that “Some people just have blood and protein in their urine for no reason”. Turns out he was wrong.

The only answer I have is that I have Bilateral Ureteral Thickening that is Idiopathic (no known cause). Every 4 to 6 months I have to go under anesthesia to have the stents replaced that keep both ureters open. The human body is not meant to have these stents in permanently but when they tried taking them out 24 hours later I went into Kidney Failure again. I have constant pain on both sides at the bottom of my ribs and both sides of my back, my blood pressure is always too low and my body temperature stays at 93 to 94 degrees. My immune system is compromised so I get sick easily. I’m always tired. I have to drink an enormous amount of water which causes more pain and discomfort. My left kidney is the only one working at 70% the left is useless. Not one Doctor in the my State or the two surrounding me has answers. At some point the stents will stop working and they will have to make a hole coming out of each side of my back for a drainage tube that comes out and down your leg. The dressing has to be kept clean and changed often. It isn’t pretty.

Do your research. If you think something more is going on and your Doctor isn’t as helpful as you think they should be, find another one.

To this day I have not been given a special diet for my kidneys or told that I should have a Kidney Doctor. I was only told to stay away from dark tea and soda. Be your own advocate, I can’t say it enough.

None of the Doctors can tell me how all of this works with my Bipolar medication either. I’m guessing it doesn’t. Since this started I have not been the same. My family can tell you that. Below are pictures of different stents used, how my kidneys kind of looked except the left was bigger and the instrument used to place my stents through the urethra. Good thing there is anesthesia.

TOUGH LOVE AND ADDICTION

I first heard of the concept “Tough Love” when my brother was a teenager. He had become someone else. He stole from my piggy bank, my grandfather’s coin collection, and my mom’s wallet to buy drugs and alcohol. He would come home when he wanted to. When he came home late at night he was usually bloody from a fight and usually it wasn’t his blood. The police were at our house often. He would physically fight with my father who by that time he was bigger than. I witnessed too much at a young age that stayed with me and still does.

My parents had heard from other people about a group that met to talk about their problem children and what to do about them. Their solution was to kick them out of the house and cut off communication with them. The idea was to not enable their behavior.

I can tell you from experience that this made my brother worse. He became bitter and his view of the world and the people in it changed from then on.

The majority of people with addictions have an underlying Mental Health issue. That is a proven fact. I honestly believe that my brother did and still does based on his behavior and what he endured when he was young.

I have always been against Tough Love and have never believed kicking your child out of the house solves anything. If my parents had taken the same approach with me I would’ve been dead by 25. I’m glad that they realized something more was going on than my alcoholism. None of us knew what or how to deal with it at the time though.

My brother’s oldest daughter began to self-harm and have bursts of rage at a very early age. My brother refused to allow her to see a psychiatrist. I think he didn’t want to be blamed for what was going on. She witnessed her parents constantly fighting, smoking pot and drinking. They would both push and shove each other or his wife would throw things at him and he would punch a wall. It wasn’t a great environment but they hid it well.

She started doing drugs her first year of High School. She graduated quickly from pot to cocaine to heroin and also drank. She could be violent when she thought someone was rude to her or didn’t like her. It would happen fast and be over in an instant. She was like this as a 4 year old. We would be eating dinner and next thing you knew she would throw a fork at your face and smile while doing it.

She was also a good liar and con. I was the only one that ever caught her and she didn’t like it. She had stolen half of my mom’s pain medication one night. I noticed she had stayed up until almost morning and I heard sniffling. When I got up in the morning I went right to her backpack, found her compact for make-up, lifted the bottom and saw about 50 pills in there. I went up to the extra room she was sleeping in and told her to get her ass out of bed because she was going home. She pretended she had no idea what I was talking about. You don’t steal a dying woman’s pain medication and everything she was doing I had already been there and done that so she wasn’t fooling me.

Eventually she was diagnosed with Borderline Personality Disorder and was in and out of treatment centers.

She has a younger sister who witnessed her behavior and her parents. She started to self-harm and my brother’s wife was smart enough to get her help but she went overboard smothering the poor kid with a million appointments and doctors. She was divorced from my brother by this time. I asked if I could talk to her or have her spend some time with me and was told no. Year after year she became worse.

Today I talked to my Aunt who told me my brother’s ex kicked my niece out of the house and she’s been living on the streets using heroin.

I felt like someone had punched me in the gut. The girl I had always known was sweet, loved children and animals and always smiled. She could’ve been helped more if the right people had been there. Cutting her off and putting her out on the street solves nothing. She hurts herself because the pain on the inside is too much. She uses heroin to make the pain go away. I know this because the few times I was allowed to talk to her she said so. I know this pain well I live with this pain and I have lived with it most of my life.

I usually don’t feel rage unless it’s about a loved one. I’m pissed my ex sister in law did this. I have no way of finding my niece. She isn’t like her older sister, she doesn’t con or become violent or constantly lie, she’s just in pain.

Now I’m in more pain imagining what she’s going through and the people she’s surrounded herself with. It reminds me of my past and what I would do to change so much of it.

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.

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