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.

Telling Your Story Isn’t Easy

I chose to publicly discuss what other people would normally hide or only tell their priest or Therapist. The reaction has ranged from positive to hateful. It’s also caused me to question myself many times and opened my eyes to just how much Stigma is attached to Mental Illness/Addiction/Suicide or anything related to these subjects.

But the Stigma, confusion and misinformation doesn’t stop with those who don’t have these issues. This I find even more appalling. When I’m attacked on Social Media by someone who has been through misdiagnosis, psychiatric hospitals, and receiving the wrong care or no care it angers me.

When I’m ganged up on and told I don’t know what I’m talking about I become furious.

THE TRIGGER

A person who follows me on Twitter is promoting a book about his personal struggle with a misdiagnosis of ADHD, medicated with 9 different Psychiatric Medications for over 3 years when the root cause was PTSD and Vision Issues.

After a recent musician’s suicide he wrote “I’ve got a ton of failures in my past- the difference is that I did NOT give up (even during a suicide attempt, which I stopped suddenly)”

One of his Followers wrote after that “Suffered from Depression for 11 months. Music and exercise, not tablets (pills) helped me snap out of it and determination”

I admit I’m not myself lately and I become irritated or angered easily. I am more sensitive than usual which if you knew me you would know this is extremely bad.

My responses were respectful. I didn’t want to appear incoherent or disrespectful. I replied to the first one “I’m happy that you have been strong enough or able to keep going. Unfortunately not everyone is the same and every illness is different.”

He asked me “Is there anything you are grateful for?” I can’t say I took that question well. I waited to respond and when I did I told him I was grateful for “My father and the people I’ve been able to help who are like me, who went too long without help, who suffer daily, the invisible ones.”

The other one I told “The reason there is so much Stigma surrounding Mental Health is because people say things like “snap out of it” when it isn’t possible with a Mental Illness like Bipolar or Schizophrenia”.

The reply was “You don’t know f*ck all about it. I did snap out of my depression! 5 weeks after snapping out of depression I was kidnapped by the authorities an injected by force!”

This is when I realized I was arguing with a person I probably was wasting my time arguing with. When I actually looked at their Twitter page and it said they were the Governor of Rowanwood and held many Amateur Boxing Championships (amateur was spelled wrong 3 times) I knew to let it go. This person was dealing with more than they probably knew about.

YOUR STORY

There comes a point where no one around you wants to hear about anything related to Mental Health, Medications, Doctors, Stigma, or how you feel. They become numb to your pain and tears and even annoyed. I can’t say I blame them. The problem is it never leaves my head. The stories linked to Bipolar and Alcoholism. The way I behaved and the consequences. The people I hurt and lost along the way. The people I lost when I stopped drinking and they found out I was diagnosed as Bipolar.

There’s also a physical component. I self medicated with alcohol for over 20 years. I have Celiac Disease but I didn’t find out until I stopped drinking. Every time I drank I was poisoning myself and doing permanent damage to my body. I mostly drank beer and shots. It took about 3 days to recover sometimes from a hangover. The last few years I was vomiting blood and my liver was enlarged. I damaged my brain, immune system, my white blood cell count is always too low, I’ve lost significant grey matter for my age, the list goes on. I did it to myself but there were also so many professionals who missed it all.

Now, I’m left feeling worse than I ever have.

WHAT I WANT TO DO

There are a few things I would like to do if it’s possible to feel better again.

I want to travel more. I love to travel to warm, sunny, beautiful places. Hopefully with wildlife.

I would like to try to speak publicly about my story to help others.

I want to take my Dad to local areas he’s never been to but I know he’ll enjoy.

I want to try to sell my jewelry.

I want to volunteer at a wildlife sanctuary.

I want to live instead of exist.

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

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.

 

 

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.

Due to Dr. Drew’s radio appearance tonight I’m posting this again.

LET’S TALK ABOUT VA HOSPITALS (Oh, We Are Going There Like It or Not)

For Veterans a Veteran’s Hospital whether Federally or State funded should be a place of safety, comfort, respect, dignity, and hope. It almost never is. This is especially true for the elderly.

I have personally seen a VA Hospital with huge chunks of paint peeling off every wall. The floors so dirty that your shoes would stick to them in places. Patients with mental health issues left to wander the halls aimlessly, some touching themselves or nude, others saying words I had never heard before and didn’t know the meaning of me. The one word I heard repeatedly was “HELP”. It was being cried out of most rooms in various stages of pain and hopelessness.

I could always smell urine, feces, and vomit on every visit. On quite a few occasions I had a chance to see all three. My mother took the brunt of most of it. But I was the good one who stayed by her side when her 6 other brothers and sisters did not.

My Grandfather was at the VA Hospital with Bone Cancer. My mother, father and I fed, bathed, and changed his diaper. I never saw a single staff member except the one time we arrived to find him sitting in his own vomit and shit for an undetermined amount of time.

No one messed with the people my mother loved. I have never seen anyone so afraid in my life. The nurse she grabbed and held against the wall as she asked how long her father had been left to stew in his own waste. I could see her holding back her pain and anger but it wouldn’t be long before she broke.

The doctors at the VA decided to remove a bone in his neck and he had to wear a Halo that was drilled into his skull. When he passed away one night the hospital told my mother she would have to wait to see him and prepare him for burial because the doctor who did the Halo procedure was on Vacation for the next week.

We were all stunned that not one doctor could unscrew a screw to take that contraption off his head. Not even 24 hours went by when my mother went there with a toolbox and took the Halo off of her father herself. The hospital did try to stop her. But like I said it was only a matter of time. My mother was fierce with her love. It’s why I still grieve for her today.

My Grandfather (Papa) deserved so much better than that. So did the Veteran at the Talihina Oklahoma Department of Veterans Affairs Center. Not one single person on this earth should die with a maggot infested wound. This isn’t 1930, 1940, or 1950. We should Goddamn know better by now and this should be a chargeable offense. This isn’t something you just “resign” over. I am tired of the treatment given to Veterans, the Mentally Ill and people with Addictions.

You know what? I would be better off on an island by myself than with human beings who find it acceptable to tell a person with a mental health issue to kill themselves, to enable anDSC01010 (3) addict to their death so they can continue to make money, and let a Veteran rot away slowly in the corner of a dirty hospital because it costs too much to do otherwise.

RICKETS, SPINAL STENOSIS, OSTEOARTHRITIS, & A PARTRIDGE IN A PEAR TREE

960ab49b065b1e31d26a566fb4959679I’ll start with what I have been diagnosed with and know for sure is accurate. There are a lot of big words with small definitions and some with more complicated explanations. I’ll try not to put you to sleep.

  • Arthritis
  • Osteoarthritis
  • Degenerative Disc Disease
  • Spondylolisthesis
  • Spinal Stenosis
  • Osteoporosis
  • Familial Hypophosphatemia (vitamin D resistant Rickets)
  • Bilateral Temporomandibular Joint Disorders

I have had problems with my back since my late teens. I never really thought about it. Most of my family has back problems. Mostly on my mom’s side.

My mom went to many, many, doctors. Almost all of them told her if she lost weight her pain would go away. I did not want the same said to me. So I ignored the pain.

In my late twenties I had begun to have back spasms and in my right hip I could hear a clicking when I walked. The spasms sometimes left me stuck in one place for long periods of time. When I was eventually stuck on the bathroom floor for 5 hours I decided it was time to see the Doctor.

There were X-rays taken and tests done. The verdict at the time was I was riddled with Arthritis in my hips, pelvis, and lower back. My Doctor also mentioned that a Hip Replacement wouldn’t be too far off. Hip Replacement? I was only in my late twenties.

There wasn’t much to be done about the Arthritis but deal with it. It wasn’t until my 30’s that things took a turn for the worse. I was working 50-60 hours a week, my mom had just passed away, I wasn’t taking care of myself, and I decided to lift a giant TV from the floor to about a foot above my head. Not one of my best ideas. I knew as soon as it happened. It felt like when you hit your funny bone only not funny.

Like everyone in my family except my mom, I waited to go to the Doctor. When I did she sent me for every test possible and while waiting for the results physical therapy. I managed a few sessions of physical therapy but when my back seized in the parking lot they refused to touch me. One of the therapists asked if my Doctor had talked to me yet. It had been a month. I told her no. She looked frustrated and said she couldn’t touch me until she knew what was going on. I gave her permission to call the place that did the imaging. The look on her face as she listened said it all.

A ruptured disc, 2 bulging above and 2 bulging below plus a lot more other problems that would have to be worked on. Who doesn’t let their patient know immediately that they are walking around with a ruptured disc in their back for over a month? I wasn’t happy.

I finally got answers. Some of it is genetic, some of it is because I have Celiac Disease and my immune system plays a part but it’s been a long road.

Osteoarthritis- cartilage between joints breaks down causing pain, stiffness, and swelling. The bones can over time break down and develop spurs. Towards the end stages cartilage wears away to nothing leaving bone on bone. I was told by one Doctor that once you reach the bone on bone stage the pain lessens. Doesn’t quite sound right but what do I know?

Degenerative Disc Disease- Discs help absorb shock between the bones of the spine and help the back stay flexible. These rubbery discs can shrink and lose flexibility causing pain. If the disc is dried out it can’t repair itself and will deteriorate. This happens mostly in the lower back and the neck.

Osteoporosis- When tissue breaks down faster than it can be replaced in bones. This makes the bones thinner and more likely to break. It also causes loss in height.

Spinal Stenosis- This is a narrowing of the spinal column that can press on the nerves in the spine causing neck and back pain. It also causes numbness or weakness in the arms or legs, or pain going down the leg. To diagnose this they usually do a MRI, CT, and Bone Scans. I also had a liquid dye injected into my spinal column so they could see what was going on more clearly.

Familial Hypophosphatemia-  This is a somewhat rare inherited disorder. It has to do with impaired transport of phosphate and altered vitamin D metabolism in the kidneys. Phosphate may not be well absorbed in the kidneys, in others the intestines. It causes softening of the bones, arthritis, spinal stenosis, and hip problems. Other adult symptoms are muscle cramps, bone spurs, dental problems, and hearing issues.(aka vitamin d resistant rickets)

I’ve had 5 Epidurals, a TENS machine, Physical Therapy, and medications I can’t take.

No one will do surgery because of a “domino effect” and that’s ok. I’m more worried about my neck now. I knew the stenosis went to the top of my spinal column but I’m hoping that isn’t what’s causing the pain. First thing in the morning I have to lift my head off my pillow with my hands because my neck is in too much pain.

W’s mom had similar problems with her neck and had to have discs replaced with cadaver bone. It was a long recovery. But she’s great now. I think it’s advanced since then. I would get second and third opinions before surgery and it wouldn’t be in my state.

You have to get second opinions. One Physician’s Assistant kept telling me my back pain was due to my mother’s death. She kept referring me to a Therapist. I know pain and the brain and can go together. I had enough finally and exploded. “My mother’s death didn’t cause a ruptured disc, bulging discs, Osteoarthritis, Osteoporosis, areas of my spine to be bone on bone or for me to go from 5’7″ to 5’6″ in a f*cking year!”. I never went back there for some reason.

Do your research but don’t over do it like I do. Always get a second opinion before surgery specifically with your back or neck. And never let the Doctor tell you what to do. There is no magic fix. Everything I read says Physical Therapy and Medications to ease Inflammation. As a last resort they will recommend surgery but most Doctors would advise against it unless absolutely necessary.