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Medical PTSD

1/24/2023

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I must admit that I've been horrible at keeping up with the blog. I apologize for that. 

Now, no one should never take PTSD (Post Traumatic Stress Disorder) lightly. I have fought with it as long as I can remember, and it's a bully. However, imagine trying to tell a new doctor you have medical PTSD and it'll take some time to earn your trust. They then think this is the perfect patient to gaslight.

What causes medical PTSD? Many times, it's several missteps.by a medical professional or professionals. Mine started with 3 TBI wounds within an hour, and the e.r. telling me I was just pregnant. When the tests showed what I told them (that I wasn't), I was asked why I really came in. I went to my regular doctor 3 days later, and was rushed in for a cat scan, then ordered to bedrest for two weeks since my brain was swollen as far as it could be, and the back was entirely bruised. Next incident was when I tore all the ligaments in my knee. id I was fine. Regular doctor then put me in a leg immobilizer. It was followed by bad doctors with their diagnoses being overturned, two hospitalized being raided by the FBI and medical records beiyg seizred by them.

To let others know, when your medical records are evidence, you can't request them like you can from the hospital.

Lou then became sick. It started with seizures. About two months of seizures later, we had a neurologist and a warning to me; stay home with him or he'll die from the seizures. The neurologist noticed abnormal kidney tests, so wehad a nephrologist. The neurology PA never conferred with us over test results, so I spoke to the manager, and we received three neurologists. He also received a nephrologist. They tried to blame his first kidney failure on him taking two inbuprofen. The nephrologist on duty told me if his kidneys failed again, it would be my fault. With a borderline Lupus diagnosis and other speci a alists agreeing with me that it was Lupus, I demanded a biopsy. The same day I demanded labs three weeks later, we received the call for him to be admitted via e.r., I informed them that if he wouldn't be treated for his Lupus, let him die at home. The biopsy results had just come in, and they were ready to treat his Lupus. The director of rheumatology took over his case.

Fast forward to when the director moved to Mississippi to be closer to family. The hospital brought in a rheumatologist in that couldn't make it in AUSTIN. The reviews on him said it al. We go to the first visit, and we heard what too many with chronic illness hear; we need to take you off all your meds and retest you because I didn't diagnose you. This type of gaslighting is dangerous. The nephrologist referred us to a great rheumatologist a few towns over, who's practice was staying open 12 hours a day, 7 days a week because of how incompetent the new guy was.

I was informed that I had precancer in my cervix and a large cyst in my left ovary. No one, however, could see the twisted and bleeding fallopian tube. They gave me a birth control shot and some nausea meds and told me I would be as good as new. That wasn't the case, and they dicided I was pain seeking. I dealt with patient relations, and they helped me get to a gynelogical oncologist ince there were precancerous cells. He was the best doctor I've ever had. When we had the consultation, I was informed I had surgery in a week. He saw me through two ovarian removals, stage iv enodmetriosis, and a radical hysterectomy.

Finally, after a lifetime of bad doctors, I found the good doctor. We moved and he scent my prescriptions in. The pharmacist was an unhinged bitch. I type that word because saying it made the legal team at the hosptial clench their teeth down hard. They forced patient abandonment. I hated where we moved over it. We had to move because the nearest speicaists were a year out and depended on the others.

My current doctor and therapist keep trying to tell me I'm diabetic. I was in ICUs the better part of August. My body was fully toxic. My puke, pee, poop,and saliva were black; I had a severe case of septic shock; I had a severe case of e.coli' the cat scans showed stroke. All of this makes several things in the body spike while others flatline. My blood sugar is regulating itself out.

My doctor doesn't try to discuss my treatment with me. When I push back, he's dismissive and has the office manager tell me she's allowing patient abandonment unless I bow to him. When I was airflown to Wausau, I complained of nurse abuse. Instead of dealing with it, I was chastised as if I were a child, and then told not to be AMA. I informed if the bruised throughout my body didn't matter, there was no way I was staying. They kept me sedated and restrained because I have an adverse reaction to anesthesia. Best believe, however, that when Lou visited me, I was unconscious yet unrestrained.

So, until medical patients, especially spoonies, are treated correctly, there will always be issues with medical PTSD>
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The Few, the Proud, the Homeless

1/3/2022

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There is a revolution upon us ladies, gentleman, and children. The revolution is not revolutionary in concept, as people the world over want to be involved in a movement such as this; it's revolutionary because we are the ones insane enough to do it.

What is it you may ask? We have several issues that those with chronic illness fight. One is the need to have relief from pain. There's nothing I can do there. Another is the inability to pay for necessary things needed in life, including a safe place to call home.

I understand the ideology of a homeless shelter, but it is dehumanizing, and does nothing for the mental health of those involved. We have chosen to obtain a piece of land with a few buildings on it with plenty of room for small houses to be placed. These houses would be furnished and allow those within it to feel human. Those within would be a person with a chronic illness and their family that are homeless while waiting for disability or the ability to learn a new skill. Food, meds, doctor visits, and transportation will be available the entire time they are there. All must be screened for violent backgrounds and with alcohol and drug tests. Since self-medicating can be an issue, substance abuse will send persons to rehab before us as we want them to have the best life possible.

SUSTAINABILITY

While we embrace the love shown during our campaigning period, we don't want all of our time and effort to go into it once we start. Therefore, sustainability is a huge part of our plan.
  • Raising funds for the organization to own the land outright leads to no monthly property payments.
  • The small homes are easy to place and virtually maintenance free with a 50 year warranty
  • The property will be slowly made into off-grid homes with solar power and rain catching systems.
  • Property will have greenhouses
  • The disabled will have a little hobby shop to make little wares for farmer's/flea markets and online sales
  • There will be 2-3 in-person events a year for fundraising into the next year.

WHY YOU SHOULD CARE

Count the people you interact with daily. 9 out of 20 people have chronic illness. More than likely, you know a couple dozen people silently struggling with a disease. To most of them, they're only a flare or two away from losing everything. We want to pick them up if they fall, but we need you to do it. Any donation helps. I tell everyone that any little something means everything to someone. I don't want you to break your back. I want you to help from the heart, with whatever you can spare. I will send receipts at the end of the month as I am, at any given moment, balancing far too much for one person. I need 32 hours in a day to get caught up.

If you have extra resources (either as an individual who's blessed beyond measure or a business), you can sponsor a completely furnished house. If you are Mark Cuban, Dave Bautista, Dave Grohl, or to that level, you could even discuss a 10-year deal with me (email) (if you're not, tweet the hell out of them for me).



We can do this, together, and before winter really kicks in. Thank you graciously for your time!
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Men Have Lupus' 2014 Press Release

9/12/2021

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There are moments that change everyone’s lives. Many will relive over and over again the day they met their significant other, the day they adopted their fur baby, when they got married, or when they had their first baby. For Heather Pontruff and Louis Obadal, they relive the first seizure. That was April 15, 2014. Their lives, unknowing to them, were about to be turned upside down.

    The thought process of such a young couple (he was 34, she was 32) is that it was just a freak incident, and he’d be fine. So, as a precautionary measure, since the seizure had him pass out, face first, onto a concrete floor, they went to the emergency room. The first hospital didn’t have a clue as to why it occurred, so they went to another emergency room. Basically, fix it and let us move on with our lives. Heather had just had a complicated surgery 13 days before the surgery, and was trying to ease into recovering. 

    Easing was never meant to be. The seizures kept coming. Lou ended up with a 3-person neurology team at Scott & White before he even had a primary care doctor. The first person to see him in neurology had noticed that he was leaking protein and red blood cells in all of his urine tests, and set up nephrology. Once again, all before a primary care doctor. 

    The neurologist saw all normal tests, yet the seizures continued. Keppra was prescribed, and the seizures slowed a little. Keppra was doubled, the seizures significantly slowed, with only one or two grand mals a week and a few absent and petit mal seizures breaking through. Lou had to give up his job as a truck driver in April, while the doctors at the e.r., and the first to see him in neurology, informed Heather she needed to ensure he had care around the clock so he didn’t die. So, all of a sudden, they went from a self-sufficient household to a house with no income, and eventually, a decreasing hopelessness associated with it.

    The medical team for Lou has grown. He has so far had the pleasure of having the following specialists treat him: 2 neurologists, 1 headache specialist, 1 neurological ophthalmologist, 1 endocrinologist, 1 fellow nephrologist and 5 staff nephrologists, 1 physical therapist, 1 orthopedic specialist, 1 neurosurgeon, 1 urologist (with the director of urology seeing him later this month), 2 rheumatologists, 1 gastrointestinal doctor, pain management doctors (3 or 4), and his primary. 2 psych appointments start him on that level of treatment, and a dermatologist is in the networks. He’s had 10 emergency room visits in 9 months, countless MRI’s, cat scans, x-rays, EKG’s, and other tests. He’s also had 6 small procedures, with 2 more coming.

    In November, the diagnosis was finally made, after much screaming at doctors. The ruling was that transverse myelitis was occurring. His first kidney failure had doctors decide to do a kidney biopsy. His kidneys failed again one month later, when the biopsy results had just came in; Stage 2 Lupus Nephritis. We found a new rheumatologist since the original one wanted to argue pathology, even though all the traits were there. The director agreed that it was SLE (Systemic Lupus Erythematosus) Lupus. The seizures inform us that it is in his Central Nervous System. He is on anti-rejection medication (Cellcept), steroids (Prednisone), seizure meds (Keppra), nausea meds (Phenergan and Zofran), anti-anxiety meds (Vistaril), anti-depression meds (Cymbalta), pain meds (Tylenol 3, Gabapentin, Imitrex, and Amitriptyline), Vitamin D (he’s deficient now), Magnesium (deficiency as well), Flomax for urine issues, and other pills are added and taken every few weeks to month. He is also prescribed to his “life line” as he calls it, his walker that allows him to walk into town.

    Now, on Cellcept and Prednisone, he has to be extra-cautious of contaminants. He wears a mask and gloves into town, since remission means giving up your immune system. Lupus is an autoimmune disease that makes your body think that normal body functions are actually diseases that need to be stopped. In order to be in remission, they must take the schizophrenic immune system and get rid of it. The protective measures he must take now leaves him ostracized.
   
Luckily, as he fights for disability, his medical care and most of his medications are covered. 
   
The problem is, most people don’t know about Lupus at all. The few that do know about Lupus rarely know that men get Lupus, although celebrities such as Beethoven, Sean Busby, Consequence the Rapper, Trick Daddy, Nick Cannon,  Seal, Tim Raines, Charles Kuralt, Jack Haley, Ray Walston, J Dilla, Michael Wayne, and Michael Jackson have/had it. When a man has Lupus, they are often hit harder medically than a woman. Even our rheumatologist stated he doesn’t understand why. 


    We hope that you will not only help us spread the word that men have Lupus, but that Lupus can kill, as it has done countless times before. Eventually, once Lou is in Lupus Remission, he hopes to start a charity for men that stand the chance to lose it all while enduring this debilitating disease, and to spread awareness and help get research in place.

    Please, spread the word that Men Have Lupus and join us on
Facebook, Twitter, Instagram, and/or Pinterest. There's also a support group for men.

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What is Lupus?

3/16/2020

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The general lack of knowledge and true awareness of Lupus in the world is rather concerning; especially when you know that Lupus was first documented around 430 BC. Now, I can go purely into scientific and medical jargon, but frankly, I'm not educating scientists and doctors, although they're welcome to read.

Systemic Lupus Erythematosus (SLE or Lupus for short) is an autoimmune disease. This particular autoimmune disease makes your autoimmune responses supercharged. Lupus will make your autoimmune system think that normal bodily functions; such as breathing, kidney filtration, wounds healing; literally anything your body naturally does is able to be deemed a disease by Lupus, and Lupus attacks that function.

No case of Lupus is identical to another. Some, like Seal, have it attack their skin. Michael Jackson's germphobia, plastic surgeries, and need for heavy duty painkillers was due to Lupus attacking his body. Selena Gomez had to have a kidney transplant while Nick Cannon has been outspoken of his kidney failures. Toni Braxton's heart has issues with Lupus attacking.

Others, like Charles Kuralt, fight the disease with no diagnosis, no hope, and a painful death. Unlike Mr. Kuralt, many don't get a posthumous diagnosis.

That one super healthy person you knew that suddenly died of organ failure could have very well had Lupus with diagnosis. Lupus can ravage the body overnight when it becomes active.

If you would like to ensure you're safe from Lupus, ask for an ANA panel to be done. It can show if the disease is dormant in your system. If it shows and you want to take further actions, we will be happy to help tailor a plan to help you protect yourself. If you'd like to help others get tested, check out our sponsor and donor pages for perks and levels.

Stay safe,.
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