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#not suggesting new meds or brain surgery or anything drastic
the-twitchy-life · 3 years
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So, I told my neurologist I’d been having some issues with my meds. My new neuro, like a paragon of practicality, suggests staggering them. Like, take med 1 and 2 and 3 at 7am, take med 4 at 10am. And you know what? It helped! Not sure I can say it fixed the issue, but it definitely helped.
Maybe my new neuro knows his stuff after all...
(Disclaimer: omg this is NOT medical advice! Listen to your doctor and be safe)
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Okay, I'm about to talk about what all was said and, I guess, decided at the Mayo Clinic this week for me, so if you don't care, keep scrolling, lol.
I got to see one of the top pseudotumor cerebri specialists/experts in the world, Dr. Fermo, who was just awesome. I loved her and she was so kind and I was so honored and thankful that she went out of her way to make time for me. She explained to me how she doesn't like to call it idiopathic intracranial hypertension, as it's more commonly updatedly called today, and, like me, favors calling it pseudotumor cerebri. She explained how it's one condition with two symptoms, vision issues/loss and headaches, and at some point, the two issues/symptoms will eventually branch off and become their own separate issues and conditions that have to be treated completely on their own as if they are independent of each other. She said I am definitely beyond the point of the two issues branching out and have to treat my vision issues and headaches separately now.
For my vision/swollen optic nerves, which thankfully aren't as swollen as they could be, but are swollen enough to cause an issue, and the built up cerebral spinal fluid on my brain, I have been put on an increased dosage level of methazolamide, which I've been on for a few months now at 50mg 3 times a day. Now I'm at 100mg 3 times a day.
The other option for the build up of cerebral spinal fluid is a stent in the veins of the back of my brain. This actually would be a good option as I have some plaque and stenosis of the veins in my brain, which they saw ony MRV scan. The opthalmologist was actually advocating solely for the stent option because he felt I had more than given multiple meds a full attempt to work and none have help enough to prevent a recurrence of cerebral spinal fluid build up, at least not like a stent would.
The issue with the stent, as told to me by Dr. Fermo, is that it's temporary. My veins will eventually get smaller and possibly collapse and I'll start to feel the stent in my vein, and just thinking about that freaks me the hell out, lol. But it will help me, but not cure me.
That's where bariatric surgery comes in, which Dr. Fermo suggested. Yeah, I know I need to lose weight, I've been known that, especially with having pseudotumor cerebri, because weight is a key factor in causing it. That's why Dr. Fermo wants me to have something like a gastric sling or gastric bypass to help speed up being able to lose weight. I know that sounds drastic, but apparently it's not uncommon with pseudotumor cerebri patients to do when nothing else helps. I also have gastroparesis, and bariatric surgery is a treatment for it, so that surgery may kill two birds with one stone. The bad news though is that my insurance "generally does not" cover bariatric surgery. With them saying generally, it may be possible they will still do it if I can prove it's medically necessary, which multiple doctors said it is.
Another reason Dr. Fermo wants me to skip the stent for now and go for bariatric surgery first is that if I have the surgery for the stent, I can't have any other surgery for 12 months, and will have to take double blood thinners for 6 months then single for 6 more months, so that has its own risks too. She said it's just safer all around to go the bariatric surgery way.
I really am not sure what exactly is going to happen. I am supposed to go to a neurologist at MUSC later this month, and the doctors at Mayo told me to keep that appointment, and then I'll see Dr. Fermo in 4 weeks. At some time at the end of August, I see the neuro ophthalmologist again, and they told me to go to that too to see how well the increase dosage of methazolamide has helped.
For my headaches from pseudotumor cerebri, Dr. Fermo said she has found great success with her patients with the headache med Emgality, so she wants me to try it for 3 months and if it doesn't help, she will work on getting me Botox, because that's the fall back to go to because it's the sure thing that works, but it takes longer to help 100% with these headaches and Emgality helps a little faster and just as good.
All I know is I'll try anything at this point for relief from these headaches. If they told me to jump off a cliff and my headaches would go away, I'd do it. Okay, maybe I wouldn't do THAT, lol, but y'all know what I mean. I'm just so desperate and so tired of having my head feeling like a boiler that's ready to blow.
I pray this all makes sense. I've barely had any sleep because of how bad my head hurts, so I could be talking all mixed up, and probably am, so sorry in advance. Thanks for those who listen and care!
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eds-zebra-warrior · 3 years
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2021 Ehlers Danlos Society Awareness Month (Day 10 Prompt: Mental Health)
I deal with Depression, Obsessive Compulsive Disorder and Complex PTSD. They all effect me in some way and depression is something I never dealt with much when I was younger. It seemed to really hit hard around the age of 25 when my health took its most drastic decline. Complex PTSD and Depression run hand and hand and result very much from being sick and not being able to get appropriate help for this. Complex PTSD goes much deeper and this condition is the one what I will explain more in depth.
At age 5 was when my mom first brought up my chronic pain to my pediatrician. He brushed it off saying “she probably just heard it from a grandparent or one of you who said their back hurt and they got attention for it so is copying them for the same attention. At age 8 I was seen for a UTI and was told, she's too young for UTIs but it may just be puberty coming on. Later that year I was taken to children's for passing out and like the UTI they told my parents not to worry about it. I’m probably just going into puberty and about to start my period which didn't happen until I was almost 15. When I was 10 I saw a doctor for my spinal curvature that I have had all my life but no one did anything about until this time. He took an x-ray and talked to my mom. She asked about a back brace to correct it and he said "absolutely not. braces only cause more problems and will make her muscles too weak. Now I'm being asked "why didn't they ever give you a scoliosis brace? If you wear a brace as a kid your spine will adjust to it and it will straighten as you grow, correcting itself. As an adult all they can do is fuse your spine. Your doctor ruined you. If he braced you as a kid you wouldn't have the pain and degeneration of the disks you have now." to make things worse they put me in chiropractic's which messed my back up even worse and the forceful cracking wore down my disks further. It took until I was 16 for anyone to realize the harm being caused and the chiropractors agreed that I should not receive further treatment but the damage was already done.
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My mom complained about my GI issues since I had surgery at 4 days old. Being told I just have IBS and need to eat more Fiber where I only got worse to the point I had to be put into colonics for regular treatment also starting at around 10 years old. Having essentially a hose shoved up your butt and then having everything vacuumed out isn't fun, especially for a 10 year old. At age 12 the woman who did my colonics finally brought attention to my doctor by telling her how difficult it was to remove my chronic intestinal blockages where I was then told that I would have 80/90 percent of my colon removed. My insurance made me get a second opinion and due to my age this doctor said absolutely not and it never happened.
When I was 13 I had just gone to a camp for kids ages 12-14 where we got to camp overnight at Magic Mountain where we pulled an all-nighter there. It's one of those family fun centers for kids with arcade games, indoor laser tag, go karts, and of course the tunnels you can crawl around and play in. Everyone thought it was really special as it's usually only open to kids under 48 inches tall but also having juvenile dwarfism and just starting HGH, me and one other kid were the only ones still short enough to play in the tunnels on normal business days but we were all crawling through those hard plastic tunnels all night, the next morning my mom picked me up and I had probably over 50 bruises on my arms, legs, near the bony structures of my spine etc. so she took me to the doctor suspecting anemia and since it wasn't anemia my doctor jumped to the conclusion of child abuse. At age 14 I was finally diagnosed with Celiac Disease. The GI issues continued while others improved. I did a little better until I was 15 when I started having to go to the hospital at least once a month for symptoms such as heart palpitations, chest pain, trouble breathing etc. and this is when the real medical abuse and neglect started.
This same year, I was banned from Mount Carmel East Hospital for being a frequent flyer and diagnosed with Hypochondriasis and as an attention seeker. They asked my mom not to bring me back but by law they have to treat someone if they show up to the hospital so one day my mom took me to the ER again at age 16 for chest pain and palpitations. I was lying in the hospital bed with my mom sitting in the extra chair when I flatlined. No one came into the room so my mom ran down the hall and grabbed my nurse pleading for help. My nurse told her they heard the alarms and they are just ignoring me and suggested that my mom do the same thing. I probably just pulled one of my leads off because I’m known for being an attention seeker and they feed on attention from things like this.” My mom ran into my room and started CPR herself which she took when I was 6 before becoming a girl scout leader. Back then the ER did not have walls between rooms, instead just having a curtain on three sides. The nurse went into the room beside mine while my mom did CPR. When my mom revived me I took a big gasp for air and the nurse heard this, ran into my room, checked my leads and realized they were all connected and my heart had in fact stopped. She called the doctor who listened to me and left the room. He came back an hour later and said he was releasing me saying “You seem fine now. You’ve been here an hour and nothing else has happened so this is probably just one of those flukes. You know a one time thing that will never happen again so as far as I’m concerned there's no need to keep you” and he sent me home.
Of course it wasn't just a one time thing; this happened a second time in which the same thing happened then a third time in which I had a seizure at school and they sent me to the hospital. The hospital hooked me up to the monitors and I again later flat lined. They came in with the crash cart and pulled my gown down and started charging the paddles, preparing to shock me when I went into a grand mal seizure and my heart started. It had stopped for 57 seconds and the hospital admitted me for the seizures. When I started having seizures they ran four, yes four drug tests, one urine and three blood tests believing I was on drugs and every tune tine the came back they believed they were somehow wrong and would re-test me then brought in a case manager to interrogate me and demand I tell her what I took that may not be showing up on the test. Eventually they did an EEG and diagnosed me with epilepsy but did nothing about my heart the whole time I was there eventually sending me home and referring me to a neurologist. None of the meds they put me on helped and she moved away with no answers so my doctor referred me to another neurologist who again was stumped but noticed I had an arrhythmia so referred me to a cardiologist.
The cardiologist ordered a tilt table test and I had a 4:30 pm appointment. I went in for the test and was lied back. I had told him about the history of coding and seizures but since it went in my medical records I didn't know if he believed me. He put me on the table and eventually tilted it up telling me that I may pass out but I’m in the right place and to let them know if I felt funny. After being stood up, the nurse asked how I felt. I said fine. A minute later she checked in again and I said I felt fine. About 5 seconds after I said fine all I could get out of my mouth was “Uh-ohh” and next thing I knew the table was flat and I was waking up to about 12 people in the room. The doctor told me not only did I pass out but my heart stopped but he had good news. He told me he was able to save me some paddle burns from being shocked thanks to what I told him about the seizure seemingly restoring my heart rate. He decided to inject me with adrenalin to see if he could simulate the same response the seizure caused and it worked. He then told me I had two choices, get an emergency pacemaker put in there or they can life flight me to Cleveland Clinic to see if they have any other options for me. I chose the pacemaker and they took me to x-ray so he could see the structure of my heart before he did it. The x-ray came back abnormal because I had a smaller than normal heart that was tubular shaped instead of round. He placed the pacemaker and later pulled my past records to find in every imaging study I had done since the age of 4 days old I had this same congenital heart defect but no one ever diagnosed it. It took 23 years for a diagnosis and had probably been having shorter cardiac arrests all my life.
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When I was 19 I lost the ability to walk the first time and went to Grant where they did a spinal tap and a brain CT for M.S. I was told I have Psychosomatic Personality disorder because both were negative for M.S. I was kept 8 days where they worked on my waking and the nurse and both PT's told the doctor they didn't think this was Psychosomatic in nature and more testing should be done. He said that would be up to my doctor and this time wasn't nearly as bad as the third time. I could stand with a walker and after about 6 days the PT's no longer had to hold part of my weight with the gait belt. I used the walker. After two days of this I was able to make it the 10 feet or so to the bathroom on the walker with just the PT's holding my gait belt just in case for precaution and not holding my weight so they sent me home with outpatient PT where I learned to walk without assistance again in about two months and walk normally again in about 4 or 5 months.
At PT they put me into in aquatic therapy and my stomach swelled up like I was 9 months pregnant within about 12 hours time. I also started going to the bathroom like a normal person for once in my life, between twice a day and once every other day. My mom took me to children's urgent care. I was still 19 and my mom just always wanted to go with me so I let her. They did a pregnancy test and I wasn't pregnant so they sent me to grant. I went to Grant where the ER doctor asked if I was sexually active and at 19 I was still a virgin. I told them no and said there was no chance of pregnancy. He pulled my mom out I'd the room and told her that kids my age tend to lie about pregnancy and how urgent care did a urine pregnancy test and he wanted to do a blood pregnancy test which is more accurate. My mom told him I was 19 and first of all you can't go from a totally flat stomach to looking 9 months pregnant in 12 hours and secondly that he legally needs to be talking to me and not her where he went in and loudly accused me of having unprotected sex, being irresponsible and need to go to an OBGYN, not a hospital when I screw up and get pregnant. I kept telling him I wasn't pregnant and he said "yeah… right… well see about that, I think I know what pregnancy looks like" did the blood test and came back an hour later and said "GREAT NEWS! You're not pregnant! You can get dressed and go home now" Then release me with paperwork on pregnancy prevention methods.
A few weeks later I was still swollen up so bad I looked like I was 9 months pregnant and now having bloody bowel movements and my mom took me to Mount Carmel where I later found out I got from the pool at riverside during aquatic therapy because a ton of patients ended up getting C-Diff. Their pool was shut down and they got in trouble for insufficient chemical levels and had to also start making patients sign a consent form that they didn't have diarrhea or abdominal pain the day of therapy since someone obviously did have C-Diff and used the pool as a public toilet. I wasn't pregnant and had C-Diff the whole time, going to all of my college classes when I had something contagious the whole time.
At 27 when I went fully paralyzed the hospital tried to diagnose me with conversion disorder same goes for the two years prior when I developed a limp that got worse and worse until I lost all ability to walk (all three mean the same thing, it's all in your head) At the ER they set me up with a team of four neurologists and four Psychiatrists where one Neurologist came in on the sixth day and said "Okay the gig is up. Quit wasting our time and resources, I know you can walk '' Picked me up out of the bed and just let go dropping me onto the hard tile floor. He was shocked that I went crashing into the tile floor and left me there for a good two minutes while he paced saying "oh my god, I've never seen anything like this. this isn't conversion disorder, it can't be right? I've never seen anything like it. her automatic reflex to catch herself didn't kick in. In conversion disorder she still would have tried to break her fall. I've just never seen anything like this. I've never seen anything like this." before putting me back in bed and leaving the room
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Later that day he returned with neurologist two, telling him to pick me up and drop me, not telling him what would happen. This in turn made neurologist 2 believe I would catch myself and this is why neurologist one had asked him to pick me up and drop me. When I didn't do this, hitting the floor again like a ton of bricks, he was equally shocked and so was the first neurologist since it happened twice in a row, he called in neurologist three and had him drop me, with the same thing happening and then later neurologist four. Neurologist four refused to pick me up and drop me saying the other two neurologists had already told him what happened. Neurologist one was very persistent, Insisting that he must see this with his own eyes. Neurologist one, then picked me up and dropped me for the fourth time leaving neurologist one both looking shocked and mad.
That evening, my dinner was brought to me and I started to take the lid off when here comes Neurologist one into my room with one of the psychiatrists. Again, he picked me up and dropped me in front of him. The Psychiatrist said "This isn't psychological." They left the room and right before shift change all four Neurologists and all four Psychiatrists came into the room. The Physiatrists took a seat on the couch and the neurologists stood when neurologist one looked at the other three psychiatrists and said "You haven't seen this yet. I have to show you. One said "No... we heard, leave her in her bed, another said "Yeah we heard all about it, we don't need to see it." I don't know if it is even important or not but I forgot to mention that Neurologist 1 was Indian and had a thick accent. Anyhow, Neurologist one, again insisted that they see what happened and for the sixth time, picked me up out of bed, stood me up and just let go leaving me to hit the tile floor like a ton of bricks. Neurologist 4 tried jump forward and catch me and this time since I was dropped closer to the bed I also tried to grab the bottom bed rail on the way down but just smacked my arm into it. Neurologist 6 didn't get to me on time either so I hit the floor again and when I hit, I went fully bladder inconsonant peeing all over myself. They put me in the bed and I couldn't control my bladder so after changing the Chux pad 4 times they put me in diapers.
The doctors left me there for another day , now covered in bruises doing nothing as far as tests but sent a case manager in to say I could no longer live alone and when my parents mentioned me moving in with them with home health care. The case manager said she believes I need more intensive care than what can be provided at home and I needed to go into a long term care facility for young adults. I got so depressed at this point I was suicidal because I had been pulled out of work only about 6 months prior from my PCP, lost the ability to walk, a lot of other symptoms were new so I as primarily bedridden and had no custom wheelchair and stuck using a really uncomfortable, broken and wobbly folding wheelchair that used to be my grandmas and was too small for me as she was only 4’7” in her 90s and I’m 5’1” Possibly 5’2” or 5’3” if it weren't for my spinal curvature and had no leg rests so we had to tie an exercise band around the bottom of the chair for me to put my feet on to keep my feet off the ground and the bottom of my legs under my knees were higher than the seat so I had to put a pillow under my legs or just deal with my legs leaned to one side. Lastly in the last 12 hours I went from using a toilet to peeing all over myself and in diapers. Ultimately they were unable to find a long term care facility of any kind that could take me either because of my dietary restrictions or my age and I was sent home with my parents on home health care and with no reason I was paralyzed.
It took two years to finally get an MRI done due to the perseverance of my cardiologist of all people but of course when I went to Cleveland Clinic to get them done, the first thing the tech says to me is "we've never done one of these before but I Google it this morning. We don't have the right parts for this kind of MRI but I think we can Jimmy rig it. That's when I knew they were going to be a big problem. I was right. We got a good enough MRI to know I was paralyzed but the flexion/extension portion was totally unusable so to this day I'm still fighting the government and insurance to cover an upright MRI out of state since they can't do the flexion/extension in Ohio.
My mom requested my tonsils be removed when I was 6 and was persistent in asking at almost every appointment she attended if mine because I got strep 2-5 times a year and was told over and over again my tonsils were huge but I would grow into them. At 21 I was sent to an ENT at Ohio ENT for sinus infections where my ENT got on my mom for not being persistent when I was young about getting my tonsils removed and how its her fault and I need them removed and how much more pain I'm going to be in because she didn't push hard enough to get them removed when I was a kid then when he removed them he came out while I was still in on the table to show her my tonsils and showed her how infected they were and picking green stones out of them to show her and blaming it all on her. He also did a termination reduction and septoplasty. I was sent home to call them an hour and a half later because my nose was bleeding so bad. They told me it's normal. I called back an hour after that to tell them I used 3/4ths of the gauze and was told I need to calm down, the surgery went fine and bleeding is normal. I then called back a third time two hours later and told them I went through the whole stack of 2000 gauze pads, saturated two washcloths and was now using a towel that had a large spot now covered in blood and felt like I was going to pass out when the nurse pauses and said "he sent you home with a whole pack of gauze? Usually we only give out about 20, so your telling me you went through a whole 2000 pack of gauze?" I said they were in a paper package that was unopened and said 2000, 4"x4" medical grade gauze" and she told me to get back to the hospital immediately.
When I got there they found he didn't cauterize the incision in my nose where they did the septoplasty and pulled out a section of bone so had to numb me up and cauterize it to stop the bleeding than give me iron pills and an iv infusion to replace my blood volume. They sent me home and the tonsillectomy was a simple recovery but the termination reduction and septoplasty which I was told would be an easy recovery was by far the most painful and worst surgery I've ever had. After the bleeding stopped I noticed my nose ran all the time, especially when I tilted my head forward. I was in the nursing program at the time and mentioned a CSF leak to the surgeon at the follow up. He said everything went perfect… even though it wasn't because I had to go back for the bleeding and sent me home. A month later he saw me again and I told him again I really thought I had a CSF leak from the turbinate reduction and he said "I know what I'm doing. I don't make mistakes and you don't have a CSF leak" I have gone through a large box of tissues around once a week since then told by doctors in the spring and summer, it's just allergies and in the winter, "everyone's nose runs in the winter" to find out this year when I finally found a doctor versed in EDS that I in fact have a CSF leak but now he can't find a doctor who knows how to repair it in EDS patients.
Drug tests, pregnancy tests and STD testing are the first things the hospital always does. Even now at almost 33 years old, the one good symptom of EDS is that you look much younger than you really are and even that can be a double edged sword. You look like you're younger than I am. In my 30s people still guess me to be between the ages of 14 and 19. When you go to the hospital, even with your age being on the paperwork, people discriminate and look at you, treating you as if you're the age you look rather than your true age, jumping to the conclusion of drugs.
When I was 29 I went to Mount Carmel for my chronic pain and was left in a special waiting room they have for drug addicts for 9 hours. I begged them to drug test me, even offering to let them come into the bathroom to watch. I was in so much pain, this was right after I was paralyzed and not yet in pain management so not on anything. They refused to do a drug test and when I went into shock my mom begged them to take me back and help me. they kept telling her I was an addict and my mom kept telling them "how would you even know. She's been asking you to drug test her since she got here and you put her in this room. It's quite obvious what this room is for and you've refused to do any kind of testing, urine, blood, anything so how can you call her an addict when you won't even do a blood test." The staff kept yelling at me for lying on a blanket on the waiting room floor and telling me to get into a chair which made the pain worse. It got so bad my mom later told me that the other patients were yelling and cussing out the staff telling them they need to take me back, one even openly admitted she was an addict and has been around addicts most of her adult life and that I'm not an addict because she would know. My mom said even a teenager was yelling at a nurse to take me back and one threatened to call the cops for patient abuse. About an hour after there was a borderline riot in the waiting room over me they finally took me back.
When I was 30, I was admitted into OSU Medical center presenting with extreme abdominal pain, the inability to hold down any kind of food and struggling to hold down water and bowel movements that were almost straight blood. Red blood with black clots. The first few days the doctors took me seriously. No one assessed my bowel movements except my nurse and she and I couldn't get anyone to but the doctor told me he was going to put on a feeding tube the following morning because my blood work kept getting worse and worse. I weighed 110 lbs. normally but had dropped to 91 lbs. The next morning Dr S walked in and said he was releasing me to go home. I told him the doctor said he was doing the feeding tube today while they ran more tests and he said "well he's not here today and now I'm your doctor and there's nothing wrong with you so you're going home."
My mom then stepped in and said "you're joking right. Half of her blood work is coming. Back abnormal, no one but this nurse had bothered to even look at her bowel movements and she's lost 9 lbs. in a week and mornings wrong!" The nurse then spoke up and said "with all due respect I really think you should look at this patient's bowel movements." he got very defensive yelling and saying he diagnosed me with Anorexia and General psychosis and sent a referral to OSU Psychiatry. I need cognitive behavioral therapy. I then called my GI doctor while my mom argued with him saying she refused to take me home like this because she's afraid I'd go home and die. My blood sugar had been dangerously low and I couldn't eat so she's not taking me home to die. Dr Shadchehr started yelling that he was calling securely to escort us out if we don't leave because I'm not medically I'll. I'm mentally ill and anorexic so refusing to eat
I spoke to my GI doctor on speaker phone and he told my mom to take me Straight to Riverside. Dr S laughed a sarcastic laugh saying they won't see you.
We went to Riverside and They took me straight back. The doctor walked in and said. "I've heard all about you. Your doctor at OSU told me you were coming. You were treated by him and right here it says general Psychosis and Anorexia. You have a diagnosis, he said you're perfectly healthy so there is no need for me to see you today. He sent a referral to a psychiatrist so I recommend you follow up with her. I had to wait a little over a week to get get into the psychiatrist and continued bleeding and losing weight in that time but finally the day came.
I went to the psychiatrist the next week and I'm a Paraplegic so I wheeled back to her office. After she talked to me and my mom for a few minutes. As soon as I got back she said "so what is it I'm supposed to be seeing you for?" I said, ``Apparently I'm Anorexic and crazy" she said "no really, why are you here?" I told her basically because I have to be and explained what happened in the hospital. She said she looked at my medical tests and things before I got there and did some psych evaluations and then said sure you're a little depressed but who wouldn't be, going through what you're going through but I have good news and bad news. Good news is you're not Anorexic or have any kind of psychosis or any kind of serious mental illnesses. The bad news is, I can't help you. The doctor recommended CBT but not all the CBT is going to fix a physical health problem and a very serious one at that. She then went on a tangent saying "I am so VERY sorry this is happening to you.
I can't tell you how many times this happens where these narcissistic, know or all doctors send me patients line you who are very sick with a physical health condition and try to pawn it off on a mental health problem, endangering your lives because they don't want to admit they actually don't know something. If I had to guess I would say that at least 90 percent or more doctors develop Narcissistic Personality Disorder at some point in their career and many by the time they get their PhD and they are the worst patients to have because of course they have NPD so believe they know it all but they are also Doctors so believe they know everything there is to know medically which means they are the least likely to seek help or treatment for this because they believe you're wrong. That right, they aren't mentally ill and you're wrong so never get help and continue to abuse and neglect patients like you for the rest of their career or until someone dies and they lose their license." she said "I'm going to read you the letter he sent me and show you. I can confidently diagnose him without even seeing him in person just because his letter is so grandiose." She read me his letter pointing out all the parts where he showed signs of narcissism in his writing which was almost every sentence and sometimes more than once in a sentence and said it's one of the worst cases she has seen and she was going to write to OSU and suggest he be removed as a traveling doctor there. She then gave me her card and said to contact her if anything ever comes up that she can help and apologized again for what he did to me wishing me luck in finding a medical doctor who will listen and can figure out what's wrong.
By the next week it had been three weeks since still bleeding and all I had been able to keep down in that tone was just under two cans of chicken broth, a small fruit smoothie, about six spoonful of mashed potatoes over several tries, the hospital gave me a peach fruit cup and I got down half of one slice of a peach, one and a half Popsicles and about 4-12 ounces if water or juice a day so was really dehydrated, really anemic from blood loss, really malnourished and had dropped from 110 lbs. to 72 lbs. I'm 5'1" by the way. I was to the point I couldn't even roll over without passing out and had to be pushed to the bathroom with my head between my knees because I kept passing out just sitting up. I couldn't go to the hospital because Dr. S had called them and convinced them I was totally insane. My mom didn't have any more PTO and went to work. I was so sick I literally thought I was going to die and wrote a note on my arm in sharpie saying who I was if I was found, what I originally went to the hospital for so they knew I was sick, my mom's contact info and a letter to my parents telling them how much I loved them and passed out twice just from holding my arms up. I was so sick and this doctor ruined my chance to get hospital care.
I then made one last stitch effort to save myself. I had told them at the ER that I had started three new meds. I managed to call the manufacturer on speaker phone with the phone lying on my chest without passing out and the first place I called was the manufacturer of Northera. They forwarded the call to one of their lab doctors. I explained my symptoms and the first thing he said was "Oh my God! A DOCTOR sent you home like this! He then said " Listen I need you to get to the ER NOW. You should probably call a squad. You are having a severe side effect from Northera and I can't believe the hospital would even consider sending you home without looking into these. I believe this doctor sent you home in life threatening condition with a condition called Gastric Ischemia. Northera is manufactured to raise your blood pressure. But in some cases it can raise your blood pressure on only certain parts of the body, usually the GI system. It can cause blood pressure to get so high that the blood vessels in your intestines and GI tract to spontaneously rupture. You are internally bleeding and can die very easily from this and I'm honestly shocked you're talking to now so you need to get to hospital asap. I told him I can't because Dr S called the other hospitals and told them I'm crazy and they just sent me home without doing anything. He said "If they won't take you, call back and have them transfer your call back to me. I will listen for your call and speak to them on your behalf. I then let him go and knowing that the ER wasn't an option.
I called my neurologists office who prescribed it. My doctor wasn't there but they called Northera and called me back saying they were getting me in with another one of their doctors and to get there as soon as I could. I had to call my mom and they let her leave work to take me. When I got there and the doctor saw me he instantly got furious that Dr S sent me home in life threatening condition. He assessed me, said I definitely have Gastric Ischemia, took me off Northera and sent me to get albumin, iron, a banana bag, fluids and a bunch of other meds to build up my blood volume because I was sent home internally bleeding for so long, they tried to replenish my electrolytes, vitamins and minerals since almost everything came back as low to very low on the blood test, pain meds, a ton of stomach meds like Zofran, Famotidine, something they said coats my stomach and intestinal lining and kept me there all day.
They didn't give me any kind of calories but told me only drink juice or things high on calories and to come back if I don't improve on 48 hours and said they want me to be eating within 48 hours, said it would be a liquid diet and I'll probably be on a liquid diet for a whole until my GI system has had time to heal and to take it slow. Work on a liquid diet and maybe try thicker foods like cottage cheese and work my way up to soft food and eventually solid food. Told me I can try things if I want to but it could take a few months to get back to a totally normal diet. About 36 hours later I got a half of a cherry icy down. By the next day I was able to eat two cans of chicken broth and 24 oz of juice and improved from there. I was on a liquid diet for about 3 weeks, a soft diet gradually going from really thin things line yogurt, pudding and apple sauce to mashed potatoes that weren't so watery they poured off the spoon to things with some spices line pot roast blended up on the blender with ensure and eventually macaroni and cheese. It took me about weeks to graduate from Mac and cheese to solid food like cereal or real meat but I did struggle eating only solid food for a while. My GI system was so damaged it had to basically learn to work again.
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August 2019 my mom went in for a gallbladder removal and told the surgeon she had EDS like I do. I woke up that morning feeling a total sense of doom like something bad was going to g happen and that my mom shouldn't have the surgery done. We got ready and went to the surgical center. She signed in and my mom, dad and I took a seat. That's when I told my mom I think she should cancel it and that I have a horrible feeling about this but couldn’t explain why. She just kind of laughed it off and said it would be fine. I kept telling her it's not too late to back out and she can always get a second opinion until they call her back to prep her for surgery. Once they prepped her they called me and my dad back to sit with her.
The surgeon Dr K came in the room and that's when I knew things would be really bad. I have always said that if a doctor comes in wearing an expensive suit or really expensive looking pin skirt and suit jacket to run and if they come in wearing khaki pants or a more basic pair of slacks or jeans like anyone can find at a place like TJ Maxx and a polo, regular old button up shirt that is like plaid or not too fancy or a basic blouse than they are the good doctors. The fancier they are the worse their sense of ethics and medical capabilities. When you have a doctor walk in wearing what looks like a custom made suit, tailored perfectly to their body, dress shoes shined to the point you can see your own reflection in them, golden cufflinks, a massive ring on their hand or even worse, multiple rings, pocket liner with a big chunky fancy and custom engraved pen in their pocket with hair styled to perfection than you better run for your life… Well her surgeon walked in and his outfit probably cost more than the most expensive suit that Donald Trump or Bill Gates himself could even rationalize buying with an ego to match. That's when I started asking questions like how many surgeries he has done and his success rate. I also told him my mom has Ehlers Danlos Syndrome and asked him how familiar he is with the condition and the surgical protocol surrounding it. He condescendingly replied that knew how to do surgery on EDS patients then explained what they were going to do as if we were total idiots. When he left the room I basically pleaded with my mom to cancel it and find another surgeon, telling her again I had a terrible feeling about this whole thing and meeting the surgeon just confirmed my bad feelings about all of this. The nurse and anesthesiologist came to get her and as she was being wheeled out the last thing I said as she was being wheeled down the hall was “It's not too late.”
She went through with the surgery and almost the whole time she was in surgery I was practically burning holes in the carpet with my wheels packing and shaking. My moms had a lot of surgeries and some more major than this and I have had quite the list of surgeries myself. My dad is the one who has only been put to sleep twice but I have never been like this during any of our surgeries. Usually I’m just like “bye mom, good luck!” and I'm pretty content about things. Of course there's always a bit of anxiety but it’s nothing major. Honestly, I'm usually way less anxious than most people are but this time I was a mess. My mom came out of surgery sooner than expected and soon after they let me and my dad come back to see her.
The first thing she said when we walked in her room was "sometimes wrong. I told them and they didn't believe me" the nurse came in and said the surgery was a success and said she would leave the surgical center in a half hour. I brought up the fact that my mom felt like something was wrong and the nurse asked what was wrong and my mom said she just doesn't feel good at all. The nurse blew it off on being groggy from the anesthesia and left the room. My mom went downhill from there. A half hour came and an hour later they came in and said “well some people need to stay a little longer than others. This is normal, it just depends how quick you clear the anesthesia. I told them, with EDS we usually need extra to stay asleep because me metabolizes it quicker than someone without EDS which again they blew off and the nurse walked out. She started having extreme pain which they blamed on the fact that they filled her abdomen with air to remove her gallbladder, Her blood pressure started dropping which they blamed on anxiety. She was, white as a ghost.
The doctor came in 3.5 hours later to check on her and kept asking if she was ready to go home trying to get her out and this is when we noticed he was acting strange, like he was nervous himself and was trying to get rid of her. Soon after she started having trouble breathing and they had to put oxygen on her. At this point I blatantly asked him if he nicked her liver and he offensively said he hadn’t. After about 6 hours my mom was literally yelling in agony any time she was moved because the pain was so intense. Her blood pressure was in the 70s/40s and at that point, having a lot of medical knowledge between nursing school and my experiences with EDS I started telling them they needed to send her to the hospital and flat out told the doctor he screwed up. He got really defensive and mad but he still left her there and every time he came in he was so nervous himself that he couldn't stand still and was basically dancing in place. I kept asking him what he did because I could tell he knew what he did and he just kept saying the surgery went perfectly and some people's bodies just over react so they need to stay a little longer. They kept saying it was normal and she would go home soon.
Nine hours later her blood pressure was bottoming out and of course they had to close and everyone wanted to go home so he couldn't keep her any more and just hope she magically got better, they finally decided to send her to the hospital. They called the squad and the doctor started filling out paperwork for transfer. The paramedics loaded my mom up with her screaming and crying out in agony the entire time. They were ready to go and the nurse asked Dr Keith if he was done with his paperwork that goes to the ER with my mom and he replied saying wait a second. I want to make sure I word this the right way. When I’m done look this over for me. I need to make sure I dot all of my I’s and cross my Ts to make sure I cover my butt.” She agreed to look at it, both thinking no one heard during all of the commotion which I happened to be recording, which is one benefit to being in a chair. You can put your phone on record and lay it on your lap, against your stomach and no one notices but I knew he screwed up and wanted all the documentation I could get. You can hear the paramedics and my mom yelling more than anything but I have no doubt if I downloaded this onto a computer and was able to adjust the sounds that you could hear the doctor say this.
She was taken to Mount Carmel where they ran blood work and realized quickly that she was internally bleeding. They gave her two units of blood and then admitted her. giving her more during the night when moving from the gurney to the ER bed and from the ER bed to the admission bed she screamed in agony and pain. The next morning we visited my mom at the hospital. She looked terrible but said she was feeling better... I think wishful thinking and asked me to bring my service dog for her to visit with later that afternoon. Little did we know, she was so sick and her blood levels were so low that she remembers little to nothing from about a half hour after being brought out of surgery at the surgical center. My dad and I went home for lunch and to get my service dog Maggie and when we were pulling into the parking garage we got a call from a surgeon at the hospital
He said my mom was crashing, they had called rapid response and they couldn't wait for more imaging and tests to find the site of the bleeding. They had to go to emergency exploratory surgery and to get to the hospital now. I told him we were in the parking garage and he told us to meet him upstairs in the ICU waiting room which was shared with the drop down unit she was originally placed in. When we got there The surgeon told us they moved her to the ICU wing. He said she seemed to be stable earlier this morning but suddenly her vitals went and she started crashing. The nurse called rapid response who was giving her blood to try to stabilize her enough for surgery right now because as things stand she would never make it through surgery so they were trying to bring her vitals up and stabilize her enough to operate. He told us he doesn't believe in giving people false hope and wanted to be honest with us, saying things didn't look good at all but if we want to go ahead with surgery he would try his best. He said it was our decision if we wanted to try exploratory surgery or let her go and he wouldn’t judge us for either decision we made again telling us how bad things were but also saying she seems to have a lot of willpower. I signed the paper to have them do the surgery as my mom put me as the person to make these decisions for her care. He then told us that at this point, when a patient is as critical as she is, whether they make it through surgery or not is no longer up to the surgeon but up to the patient and their willpower to fight. He asked if I had any questions for him and I said “There's no time for questions, just please, I’m begging you, do your best to save my mom. We still need her. He told us rapid response was in her room so there will be a lot of people so it's pretty crazy in there right now but told us he suggested that we go in, tell her goodbye and make our peace with her now just in case because we may or may not have another chance to.
We went to the ICU and I stopped right outside the hall where a nurse came walking up. At this point I started crying telling my dad to go in and told him I can't because we had Maggie with and Service dogs aren't allowed into the ICU but to tell my mom I love her. The nurse then said “Just go ahead into the room. You’re in the hospital a lot too aren't you? I said yeah. He said “I knew I had seen you two around here before. I’ve seen her and trust me, she’s way more behaved and better trained than most of the so-called service dogs other people bring in here. The only thing that worries me is that she will get stepped on because there's a lot going on in there”. I picked her up and put her on my lap and he said “Perfect” He took us to her room and told us to try to get up by the bed to see her but also try to stay out of the way of rapid response. Being an interpreter and also going to school for nursing I quickly spotted out the best place to be without then having to tell me. There were four people in her room working on her, one left from the right side of her bed to go grab some more blood and there was a couch beside her bed that was up against the right wall but about 2.5 feet from the back wall so I told my dad to go into the hole where the couch wasn't against the back wall and went in after him parking my chair right in front of him and with my knees under the edge of the back of my moms bed so we could both reach her.
The rapid response guy came back and I asked if I was in his way and he said no, not at all and that he will have to remember this because that's a good spot for people to stand and be out of the way. She had 4 double lumen lines going into her connected to four bags of blood, antibiotics, and a ton of other bags of medications. Somehow she was still awake and talking. We told her we loved her and needed her, to keep fighting and I told her Maggie was here too and needed her grandma and put my mom's hand on her head. My mom said hi to her and told us she wasn't going anywhere. Interestingly, this was one of the only things she remembers from the whole experience. She later said she remembered thanking me when they were taking her down to surgery that she made me a promise not to go anywhere so she better not break it lol. They wheeled her out of the room and as they were going out of the room I told one of the nurses that she had Ehlers Danlos Syndrome.
They sent us down to surgical waiting. In surgical waiting they told us that it's hard to tell how long surgery will last because it depends how hard it is to figure out what's going on during exploratory surgery but at the very least we are looking at 2 hours. I asked if we had time to take my service dog home and drop her off since if she made it out she would be back in ICU and she said we should have plenty of time. We live about 12 minutes away from the hospital so ran home and dropped Maggie off. On the way I called her brother and mom and updated them. Of course when we got home my Autistic dad goes into the kitchen and starts pouring chicken broth into a pot and filling up another with water to make himself some mashed potatoes and noodles so I had to stop him and tell him there was no time for that and if he was really that hungry grab something quick like a sandwich because we had to get back to the hospital. He asked why, saying they said at least two hours. I told him because we need to be there in case something goes wrong. He grabbed a sandwich and a bag of chips and we went back to the hospital.
We got back 35 minutes after we had left and when we went into the waiting room my aunt and uncle were in there and said they called my mom this morning and said they were going to visit but when they went to her room, someone else was in there and they told them she was in surgery. She asked why we didn't call and tell them. We said we didn't know they were coming and it's an emergency surgery so we didn't know it was happening ourselves until about an hour ago. 45 minutes after they took her back, a nurse came out and told us they were done. I asked if she was okay since “were done” doesn't say much, not even if she survived or not. She just said that the doctor said he would meet us up stairs in the same waiting room he spoke with us in before surgery. We went upstairs and he never came. After 45 minutes of waiting for the doctor my aunt and uncle left. An hour went by and no one came. After an hour and 15 minutes I couldn't wait any longer so went back down stairs while my dad stayed upstairs and told the surgical waiting nurse we had been up there for over an hour and the doctor still hasn’t come. She seemed surprised and then said to go back up there and she will send him our way when she finds him. I went back towards the elevator and here comes the surgeon out of a door in the hall.
He apologized and said he was just about to come up there and it's been a crazy day because as soon as he got my mom out, they had another emergency surgery. He said my mom survived the surgery but things are still very critical and that she was in a coma. He said he still doesn't want to get our hopes up because he doesn't believe in that and that we need to be very aware that what happens from here is very much reliant on her and it's now up to her and how badly she wants to fight whether she goes one way or the other. He said the surgery was actually really quick because once they got her open it was quite obvious where the bleeding was coming from He said it looked like her liver had been sliced into during the surgery and after bleeding for so long her body couldn't tolerate it anymore and all of a sudden she went from internally bleeding to hemorrhaging. He said when they sliced her open her abdominal cavity was filled with blood, which I knew because before they wheeled her into surgery her stomach was so distended she looked like she was pregnant. He said it was a good call telling the nurse that she has EDS because that's not something he's familiar with but the nurse had a family member with this so was able to give him some pointers. He said he had a hard time with suturing her liver shut because her tissues kept ripping through the sutures so they ended up putting a dissolving sponge in there around her liver to help hold it together and did multiple layers of sutures to close it up. He said once he was able to close up her liver he pulled all of her abdominal organs out (he acted it out with his hands), saying the intestines, kidneys etc. examining them one by one, to make sure he didn't miss anything before putting them back in, cleaning her out really good and closing her up. He again said things are very critical and I asked about the game plan. He said he was hoping for her to come out of the coma in about two weeks and if that doesn't happen we will worry about that when the time comes. He then told us we can go see her if we want to.
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I got my dad and we went to my moms room. She was covered in tubes and surrounded by machines. I asked the nurse if they knew if she had any cognitive functioning and they did not and wouldn’t be assessing that yet. I went up to her and put my fingers into her fist and asked her if she could hear me, to squeeze my fingers. She squeezed. I then noticed her feet were covered up and I know she hates having her feet covered so I asked her if she wants her feet uncovered to squeeze my hand. She squeezed. I then uncovered them and asked her if she wanted them covered back up to squeeze my hand and she didn't squeeze. That's when I started having some hope.
I told my dad to get on the other side of her and he did and I told her those fingers were his and to squeeze his fingers and she did. I then started asking her yes and no questions, telling her to squeeze my hand for yes and my dad's hand for no. I asked if she was in any pan and she squeezed his hand. I asked if she was comfortable and she squeezed my hand. I asked if she needed anything and she squeezed his hand. I asked if she was tired and she squeezed my hand. I asked if she wanted us to leave so she could rest and she didn't squeeze any of our hands so I clarified and said “It's okay, if your tired mom, You’ve been through a lot. If you want us to leave so you can get some rest we can come back tomorrow morning. It’s about 7:00 at night now and if you need to rest we totally understand. I will call the nurses station right before I go to bed to check on you and I have an alarm set for 8 in the morning to call again and check, right after shift change. If you want to go to sleep we will come back tomorrow around 9 or 10 in the morning but it's totally up to” right then she squeezed my hand and I said so you were worried because you didn't know when we would come back? She squeezed my hand. I said we will be back between 9 and 10. Did you want us to leave so you can rest? She squeezed my hand. I then pulled my hand out and told her good night and good bye. I saw her fist clinch like she was squeezing and I went back over and said I saw her squeeze and asked if she needed anything and she clinched her other fist so we went home for the night.
Of course I ended up calling the nursing station at 9 pm, at midnight, at 4 am and at 8 am that night but we came back the next morning. There wasn't a lot of progress that day but we visited twice that day. The third day I made my 8 am call and to my surprise they said she started co breathing with the respirator earlier that morning. We visited again and she was still in a coma but they said her co breathing was getting better and better and if she kept up the good work, they may take her off the respirator portion of life support the next day and put her on forced air. Well we left and when we came back at around 7:30 pm they told us she was starting to come out of the coma and was now in a semi conscious state now opening her eyes and looking around every once in a while and they had just pulled the respirator and put her on forced air.
The nurse followed us into her room and said they would like to try a nasal cannula and are pushing her hard because you can get addicted to oxygen fairly quickly saying they wanted to sit her up in a chair and put a nasal cannula on her at the highest setting and asked if we would mind sitting with her and letting them know if her oxygen hit 70%. We agreed and she was still very much comatose only opening her eyes once when the first started to lift her to put her into a recliner. They reclined it back enough that she wouldn't fall out and had us watch her. We talked to her even though she couldn't talk back other than squeezing but she did open her eyes twice within a half hour. After about 28 minutes her oxygen hit 78 percent so they came in, put her back on forced oxygen and back in her bed saying she was doing really well. We visited a little while longer and then left so she could get her rest. On day four she woke up and was out of the coma, able to talk to us but did fall asleep a lot. That day they went back and forth between the nasal cannula and forced air. Day 5 she went onto the nasal cannula and was pretty much full out of the coma. She got better and better and pretty much as soon as she could prove she could get back and forth to the bathroom without passing out they sent her home. Her oxygen would still drop really low when she went to the bathroom or walked at all so that was scary but she came home. She struggled with her oxygen levels for a long time but eventually that improved.
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Months later she was still struggling with memory which she still does to this day, she still has pain and severely decreased energy levels. We found out over a year later that she had multiple brain aneurysms either during one or the surgeries or while on life support and was diagnosed with permanent cognitive impairment. She has very low energy levels now and will never be like she was before the botched surgery. She returned to work only to be laid off during the pandemic but while she was working I honestly felt like she had no business working and should be on disability as when she wasn't working all she did was lay on the couch and sleep. She had zero life outside of work because work took every ounce of energy she had, just doing a desk job so it does worry me that she has been trying to get another job because since being laid off she still spends most of her day on the couch asleep or just laying down watching tv, struggling to even get out of bed in the morning and get the energy needed to do things like shower, cook and clean.
I see a lot of me, right before my doctor pulled me out of work in her. Refusing to admit she's as sick as she is and pushing further than her body can actually tolerate, all because this doctor said he knew about EDS and the surgical protocols when he didn’t and maybe even his job as a whole, slicing her liver open and when was scared he would get caught so didn't tell the hospital what happened and spent 9 hours covering his butt while he let my mom sit there dying and left the hospital having to go in emergency exploratory surgery to try to figure out what happened when if he told them and sent her to the ER right away they may have been able to fix it without her having all the problems from bleeding out and the coma she had today. And to think, in Ohio you can't sue for medical abuse and neglect unless someone dies or is essentially permanently a vegetable so. These doctors just get to walk away with no ramifications for destroying people's lives.
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PTSD is complex and severe especially when you are living in a world of people with very high respect for medical personnel but you know if you have a rare disease you don't get the caveat of good doctors and nurses. They are far and few and honestly the medical field is just like every other job where 95 percent of the personnel does 5 percent of the work, pawning it off on the 5 percent of the staff that actually takes their job seriously forcing them to do 95 percent of the work. As I mentioned before, I saw a psychiatrist after falsely being diagnosed with anorexia and general psychosis when I really had a life threatening condition called Gastric Ischemia and she said that she believes at least, the very least 90 percent or more doctors develop Narcissistic Personality Disorder at some point in their career and many by the time they get their PhD and they are the worst patients to have because of course they have Narcissistic Personality Disorder, so believe they know it all but they are also Doctors so believe they know everything there is to know medically which means they are the least likely to seek help or treatment for this because they believe you're wrong and continue hurting people and even taking lives never believing they are to blame.
I believe this wholeheartedly and those with common conditions take for granted the medical care they receive. Doctors like easy cases, they like treating conditions they know about because they know exactly what to do and can get them in and out, putting in little work and making a lot of money but if you have a rare disease most doctors and even nurses are too narcissistic to admit they haven't heard of something or don't know everything there is to know about every medical condition. Most humans are also very lazy creatures preferring to take the easiest way out so if they don't know about your condition there's no way they are going to sit down at a computer for hours and really look into it and learn about it and too much pride to contact specialists in the field to get advice and learn to treat the patient properly. They look for the easy way out and unfortunately the easy way out for most doctors is one word, well actually one word that they keep replacing with a new word every few years. Hypochondriasis, Psychosomatic Personality Disorder, Psychosomaticism, Somatization Disorder, Munchausen Syndrome, Illness Anxiety Disorder, Factitious Disorder Functional Neurological Symptom Disorder, General Psychosis, Conversion Disorder. It doesn't matter what term they use as the term is updated every few years once patients catch on to the true meaning “Nothing is wrong and it's all in your head” Occasionally if you present with other symptoms like weight loss or vomiting they may even pin a body dysmorphic disorder on you such as Anorexia or Bulimia. Anything to get you out of their hair and make you someone else's problem so they can get their next easy fix patient. Most doctors doctors and a lot of the bad nurses develop narcissistic personality disorder and true convince themselves that they are doing the right thing, even if they get a call saying the patient died upon release, “they were fine when they were here so that's unrelated”
Even if a person has a medical condition that explains their symptoms but they don't take the time to listen to the patient or do research its “well the symptoms the patient presented with had nothing to do with their preexisting condition" so if they die they can go home at night feeling zero guilt and zero remorse because the medical field is very much based on desensitizing themselves to trauma that they take it to the point of denying accountability to the patient, their other doctors, their families and even themselves which is why the majority of EDS patients and patients who have severe or serious rare disease as a whole develop complex PTSD.
There is no treatment available to us because who do they send you to for PTSD? A Psychiatrist, a Psychologist or a Counselor and what are they? Health care workers. Practicing in the very same field that has encompassed us with a lifetime of medical abuse and neglect. Sending someone with Complex PTSD from medical abuse and neglect is like sending a US military soldier who developed PTSD after being a prisoner of war in Iraq back to Iraq to talk about their experiences with an Iraqi soldier. It just doesn't work. To make things worse, the abuse and neglect continues even after your diagnosis so it's like sending that US soldier back to Iraq to be a prisoner of war over and over and over again. If the medical field doesn't change the abuse continues and the PTSD gets worse and worse throughout our lives.
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