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handimommablog · 3 years ago

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I feel like now is a good time, or at least as good as one can get, to explain why I’m here. Why I feel so jaded and so unjustly in this chair. I’ve contemplated telling this from the VERY beginning (like 15 years ago) or I can start from now, and bring you on the journey of how I discovered I was disabled. I choose to start from now, so I hope you’ve gotten comfy and have a moment, it’s gonna be a bumpy ride. Believe me, I lived it. It sounds like a bad lifetime movie, but I promise you, it’s not. And that’s the part I seem to struggle with the most.

I was taking a bath, after my kids and bonus kids had been put to bed for the night, I wasn’t feeling well, my hips were killing me, it hurt to move, but I had assumed it was either the oncoming period or the stress I was under with the kids and finances. Then I see my stomach move, I knew I wasn’t pregnant and certainly not far enough to have that kind of movement. I yell for my fiancé, show him, and ask him to take a video, because it honestly felt surreal. It felt like an alien was inside my body, I never felt that way, not even when I was pregnant with my children. We got me out of the tub, and called a friend, who convinced me despite my hesitation and loathing for calling my doctors office, to call. I was banking on her saying it was nothing, I was wrong. Off to the local trauma center’s emergency department I go, with a doctors call ahead. Everything in my gut told me not to go, but I was in so much pain and I felt so sick, I decided to ignore my intuitions warning, and trudge ahead anyways.

We get there, and check in, we look around, and it’s going to be a long wait. We settle into a pair of seats, and wait. I get into triage, and I’m explaining what my doctor suspects and what I’m feeling, I’m brought from that triage to another, where they begin to pull blood and get an IV into my arm. Then things start to go fast, faster than I’ve ever seen them go in an ED, especially this one. I’m sent to the top of the line, ahead of several others in the ED, and brought back to a bed. Everything you would expect and should expect to happen in a ED is happening. Nurses are trying to get me situated in a bed, the resident comes over does an assessment and even he is weirded out by the stomach movement, to a point he performs an ultrasound, himself. He throws his hands up and says nothings wrong, and goes to report to his attending. The attending comes over, and she’s really concerned with my symptoms, and starts doing a neurological exam. She begins poking at my spine during this, until she hits this point where I black out. After I black out, I remember her mentioning an MRI, and agreeing (remember this, it’s important), I don’t remember anything else, until I begin waking up in a strange room, inside of something. I try to make sense of it, but I can’t place where I am. Then I’m moving, being pulled out of the place I was in and I feel a warm sensation like I’m going to pee. I sit straight up and I’m panicking, asking where am I, how did I get here, why am I in a CT scan, the doctor ordered an MRI. The next thing I feel is the hands of someone forcing my body back down, I then feel the impact, the feeling of my head going too far back, like there was nothing there to catch it. I’m screaming, thinking i’m going to be raped or something, (yay life long trauma) because I still don’t realize where I am still or who these people are. Then I begin screaming for my fiancé, who’s already trying to get into the room because apparently from the moment they began forcing me down, I was screaming. Those fight or flight instincts are strong my friend, strong. I’m finally transferred onto the stretcher that I was apparently rolled in on, and put into the hall way. Doctors start crowding me and demanding I need to go back into the thing I now realize is a CT scan. I refuse and a security guard forces them away from me, and instructs whoever was at the top of the stretcher to get me the hell away from these people. The same security guard refuses to leave the bay i’m assigned to and is actively throwing doctors out of it and nurses. He gets me calmed down with the help of my fiancé, and then informed the doctors to cut the shit and act appropriately before going back to wherever he came form. Next a nurse comes over and rips my IV out of my arm, not even taping it. Then comes the doctor who’s demanding I trust him and do whatever he says. I refuse and state I want to be discharged immediately, and that I’m going to be contacting the administrator to file a report against him. My fiancé, the saint that he is, refuses to allow me to leave until I get the discharge papers handed to me. I get them, and I wish I didn’t get them, but I did. And I look down and I see I’m pregnant, that they knew I was pregnant, and even referenced putting me in a CT scan despite knowing this. I see red, and I tell the doctor he won’t be hearing from an administrator, hell be hearing from an attorney. I hop down, and begin to walk away. I get halfway down the hall before I realize my leg I thought was just asleep, wasn’t moving, it was dragging behind me, while three nurses pointed and laughed. It was the last time I’d ever walk again, and I didn’t even know it.

From there, my fiancé and his mother insisted I go to another ED as soon as possible. I finally oblige after a hell of a lot of coaching and encouragement.

We get the kids settled into bed that same night, and we preset them. We tell them we’re going to go to the doctors that night, and that they might not see us in the morning. That their grandmother is watching them and then their aunt and uncle will pick them up if we’re not home by dinner tomorrow. They’re sad but excited to see their family, so they head to bed and they’re set. We get ready to go and my Fiancé starts trying to help me walk towards the door, I remember saying I couldn’t see anything, and I remember saying my head felt like it was going to explode. The next thing I know I’m in the back of an ambulance, headed to a different hospital. I become more lucid and the EMT asks me some questions about what’s going on. He looked at me and said “I don’t believe what you’re telling me, it’s crazy. No hospital would do that.” As soon as we arrive at the hospital, the EMT goes about telling the nurse I’m crazy and a liar. Thank goodness my Fiancé was nearby and was able to hand the same nurse the EMT was badgering, the paperwork from the prior hospital. The nurse immediately comes back to me, and apologizes, then moves me into a different room. From there, the doctor comes in and explains, that he believes everything that happened, and he agrees the sudden neurological symptoms, such as difficulty seeing and being unable to walk without passing out, are serious issues. Despite this, his hospital doesn’t have a neurologist on staff, and the best he could do was offer a virtual consult with one, from their sister hospital. If the neurologist agrees with his assessment, they would transport me over to there for further testing. Then the doctor said something I wasn’t expecting. That he felt the virtual assessment would be pointless, because it requires the patient to be capable of following a series of voice prompts, which he already determined I couldn’t do. We asked if we could discharge AMA and go over to the hospital he was referencing, as I would be transferred there anyways. He agreed it would be best, but that he needed us to understand the dangers associated with that. We agreed, and followed through with his plan.

I want to stop and take a moment to note, that hospital was probably the most helpful, as they didn’t even try to say they could handle whatever it was that was happening. They agreed what was happening to me was abnormal and emergent, validating us off the bat for the first and perhaps only time I can recall. They explain that they don’t have neurologist on staff, and that the best they can do is a virtual consult, and that given my condition it would do nothing but hurt and upset me more. That is a hospital that deserves the clout other larger hospitals in the area receive. And if I ever get a chance to reinvent the health care system as a whole, the doctors and staff I encountered at this hospital, are ones I want to work with.

We arrive at the other hospital, and frankly it seems to be better than anything we experienced so far. The ED waiting area was clean and nearly empty. The Triage area is clean and the nurse is understanding and attentive. I remember being brought back to the bay I was assigned to. I don’t remember much else. I remember the doctor examining me and it hurt so bad I blacked out again. I remember vaguely them attempting to put me into an MRI and panicking, and then nothing, until nearly two days later, when I wake up and notice I’m in a room on a different floor of the hospital. My fiancé quickly recapped what had gone on, but I frankly to this day don’t remember what happened leading up to waking up on the neurological floor. I remember talking to him about having not peed for a while, and being concerned that I hadn’t peed. He immediately set about getting that fixed. I remember a commode being brought into the room, and him helping me get transferred. I remember them being astonished that I had that much urine in me. That probably should have been my first sign, but I guess hindsight is 20/20.

We went to bed, or at least my Fiancé did. I woke up, about 7 hours later and rang for the nurse. You see, I have a background in direct care, so I knew if I wasn’t able to feel my bladder, I needed to do something called time voiding, which is basically timing yourself to use the bladder at evenly spaced intervals, so that urine doesn’t build in your bladder, stretching it or worse, causing it to burst. I tell the nursing assistant who came in, I needed to urinate and needed helping getting to the commode to do so. She shot back a nasty comment about waking my fiancé to help. I explained he hadn’t slept in days, and that I would rather not wake him. I then asked if she could please help me get onto the commode and off of it a second time. She said she’d be right back. She never came back other than to continually turn my call bell off. I eventually peed the bed in my sleep that night. When I woke up I told my fiancé what had happened. He immediately informed nursing staff and so did I. He had to beg for new sheets to be brought to me, and for a new gown. He then had to beg for help to get both me changed and the bed changed, as he didn’t know what to do or how to do it. The finally helped get me and my bed changed, and stated the nurse I had the previous night wouldn’t be assigned to me.

From there the neurologists came in, and told us they were going to be doing an MRI but that they couldn’t use anesthesia, as I was pregnant. And that most of what needed to be done to find out what’s happening, isn’t something you can be pregnant for. We explain that at this point, my health comes before anything else. We have four kids, all who need their mom, and that they and I are the priority, not an unborn child at this time. Then one of the members of the neurological team becomes upset that I would say such a thing. I ignored it, and reiterated my stance and that it’s my right to choose, and that we had already been looking at fostering, so it wasn’t a decision made lightly, but rather one that we weighed heavily and consulted others about before making the decision to abort. We then are told by the neurologist that if that is the case, they would be able to move forward. We were fine with that, and assumed it was done. Then the same doctor came back in after my fiancé left to grab food, to attempt to “inform” me of my other options in regards to my pregnancy. I quickly and very sternly asked her to please keep her opinions to herself, and asked her to leave. I had to call my Fiancé to get her out of my room, and to stop trying to guilt me for our decision. She was removed from my case, however it wasn’t the last time she’d pop up in this story.

The MRI went well, it was hard to finagle, but it went well. The anesthesiologist made sure he was the last person I saw going in, and the first one I saw waking up. I was moved back to my room, and the rest of the evening was relatively uneventful, until I needed to use the commode again in the middle of the night. I woke up, hit the call bell, and then the same nurse appeared, smiling ear to ear. I said I needed to be toileted, she simply said “ok” and walked over to me, took my call bell and put it out of reach, then took my glasses from my side table, and walked away. I tried to wake my fiancé up, but he was dead to the world. Finally sleeping in a recliner and getting the sleep I needed him to get, to be able to help. I resigned myself to what had occurred, and went to bed. I woke up him, and told him I needed to pee, and what had happened. The nursing staff insisted the woman wasn’t in my room the night prior. When I pointed out the call bell being put somewhere I couldn’t reach and my glasses being MIA they didn’t say anything, just that the nurse wasn’t in my room. We later received confirmation she was in my room, because she was still assigned the night prior to my roommate. I became so overwhelmed by this, I started to have an anxiety attack, and I began asking for my anxiety meds. I’m informed by the nurse, that there were no orders for my anxiety medication. It was then that we realized I hadn’t even been given them, since admission. In fact the only thing they had given me were lidocaine patches and a few sporadic doses of gabbapentin. I began demanding to know why my medications hadn’t been ordered correctly or even put into the system correctly. My fiancé asserted he was told they did do that, and that clearly the physicians had mislead us into believing they were in the system and ordered. Then the issues really started.

From that moment on, I was labeled as a drug addict in that hospital. A drug addict, with no prior history asserting this, other than demanding the doctors do their jobs and get me the medication my psychiatrist had prescribed for my PTSD and Anxiety. I even tried to explain to them that by being properly medicated, I would probably be easier to deal with to begin with, because I would be able to use my coping skills to keep my fight or flight at bay. They decided they knew better, and that I was simply seeking my medication. The medication that is not habit forming or addictive, or even a controlled substance. A blood pressure medication that regulates the panic of the fight or flight associated with PTSD, and the perscription version of freaking Benadryl, and my need for both of them, do not equate to an addiction. How can a group of physicians, who arguably had to go through 10 years of schooling at least, be that uninformed about addiction? Another question I hope to learn the answer to one day and prevent from happening.

That night was possibly the worst of them all. They refused my lidocaine patches and gabbapentin that night, and then the same nursing assistant was assigned again to the room I was in. When I again paged for toileting, she choose to remove the commode from my room and place it in the bathroom, where I couldn’t get to it, even if I tried, because she also took my wheelchair. I went to bed completely defeated and beaten down. I promised myself in that moment, that I was going to change the way people with PTSD and related illnesses are treated in hospitals. I didn’t know how, I didn’t know when. I just knew I was going to do it. I had no clue what was coming next, nor did I realize it would be the fuel to my fire.

The next morning I’m again met with a team of doctors, most of which seemed to have planted their feet in agreement with the resident who told them I was a junky seeking medication, because each time we would bring up needing my PTSD meds, they would dismiss it. They informed me they still had no clue what was happening, and that they would have me meet with PT to get me set up with a wheelchair of my own, and help make other referrals in regards to my discharge from the hospital. They stated I needed to have a follow up MRI in 6 months, and that they wouldn’t be doing any further studies. I met with several other providers that day, all seeming to tell the same tale. I was fine with that, I called my primary physician, who began coordinating with the hospital in anticipation of my discharge and setting up outpatient appointments. My primary informed me that they would discharge me after the appointment with PT at 3:30, and that she made an appointment for me to follow up with her the next day. She informed me bad weather was coming and that we should probably try to leave either very early the next day or that night, so that we could get there on time and safely. We then told the nursing staff at the hospital what was happening, to make sure they were aware of the situation. They informed the resident, who came in furious we were planning to leave. We made our stance clear and made it clear we were acting based on the information both their department gave us and the advice of my physician. We went to go eat something, and made sure we were back by 3:30. We waited and waited until 4 rolled around, we called for the nurse to inform her that we needed to really get headed back soon and that we were concerned that PT was late. We were then told by the nurse the resident told PT they could come tomorrow or whenever, instead of the original plan of them coming at 3:30 that his attending agreed to with my primary physician. I was furious. I stated we were leaving regardless as I was tired of being labeled by him and that it was absolutely inappprpriate what was happening. I continued to assert this, as did my fiancé. My fiancé after this ordeal decided he needed a break and was going to start getting stuff in the car while we waited for my paperwork. Then the same resident came back in, and tried to again convince me I was an addict and that there was nothing wrong with me. I demanded he leave the room, several times, he continued to refuse until I called my Fiancé for back up and to get security. He then finally leaves. He comes back in after my fiancé is back and is handing me paperwork to discharge me. I specifically ask if my pain medication had been sent to the pharmacy, and he says yes. I state I want proof of that before signing anything. I don’t know why I said that, I think it was intuition honestly. He finally obliges, goes to the computer to do just that, and comes back saying the best he could do was send in acetaminophen and lidocaine patches. I was relieved and said that will work, thanks so much! He stands there shocked for a few minutes, as Britten begins moving me from the bed to the wheelchair. He remains there is total disbelief, until we leave.

We go down to the pharmacy at the hospital, and even the pharmacist is shocked that’s all I was discharged with, and offered to call up. We politely oblige and say that it’s plenty and that we were trying to just make it back to my doctor tomorrow, which was a 4 hour drive.

It’s a rough trip back to a hotel room to gather the kiddos who have been living it up with their aunt and uncle the last few days, and settle in for what would be a long night.

We make it without incident back to my doctors office, they get me a wheelchair and other medical equipment such as a shower chair, a commode and adult diapers. They also referred me for physical therapy, occupational therapy, speech therapy, nursing services and home health aids. Things started to normalize, but we still had no clue what was happening, just that it was. From there began the mission to help me walk again, we had no clue what that truly meant or what we would find from that.

Within a few days, my condition began to deteriorate rapidly, we called upon the other parents in our childrens lives and asked them to help. That was possibly the worst idea we had, but we will get to that in another blog post.

As my condition began to worsen, we decided to try going back to the third hospital we went to, despite their terrible treatment, they at least seemed to have some answers. I could go into detail explaining the further medical abuse and maltreatment I received, but that’s again a story for another day. The important part here is that they again did nothing and the complete lack of care continued with the nursing staff similarly to the prior stay. We decided to leave and head to another hospital, one that was internationally accredited for rare neurological disorders, and frankly medical mysteries.

We did find some answers there, and the treatment wasn’t horrible, it wasn’t great, but it reminded me of the stories American’s often tell of the European health system. They ultimately decided I did have a neurological conditional, they weren’t sure which one, but they suspected something called functional neurological disorder, which lead them to suspecting I had irritable bowl syndrome and Fibromyalgia.

It was at this hospital that they located my prior medical records, showing at the ripe age of 16, over 15 years ago, a neurologist saw something on an MRI I had, due to sudden onset of seizures and other neurological symptoms that my egg donor said were fake and being caused by a variety of mental health issues I later would find out I never had. The thing that hospital discovered, may indicate I have Fibromyalgia and that I have had it for a long time. I was then informed the only reason I didn’t receive care or further testing, was because my egg donor stated she was taking me for a second opinion. That second opinion, was actually a psych hospital. I never received further diagnostic testing or any treatment by a neurologist, I didn’t even know I needed more testing, because my egg donor made sure doctors never spoke in front of me. She convinced them of this because she claimed my mental health impeded my ability to understand what they’re saying and it could cause me to use that information to manipulate others.

That discovery made me both laugh and cry, because unbeknownst to my egg donor, who I’ve been estranged from for almost a year I had been fighting with my psychiatrist for months, refusing to accept the diagnosis that my mother convinced me were true (borderline personality disorder, schizophrenia, acute psychosis and many more) were inaccurate and wrong. I went through 5 psychiatric and forensics evaluations, all indicating I had Major Depressive Disorder, Severe Anxiety and Complex Post Traumatic Stress Disorder, none of the above issues, that my mother convinced me I had. It was the moment of realization for me, that not only had I been emotionally abused (which I had already come to terms with) and used as a medication dispenser for my mother (another realization I had already come to terms with) but medically neglected and abused as well.

From this hospital stay, I began to heal, and process and understand what was going on, that I wasn’t “crazy”, my symptoms I had, ever since a car accident at 16 years old, were real. I wasn’t crazy.

I started to make appointments, to get other things situated, such as an eye apppointment, so that maybe if my vision couldn’t be totally corrected, we could get something to at least make me feel semi normal vision wise and lower my anxiety about not being able to see.

We had no clue that appointment would take me from being a medical mystery to being diagnosed with something.

The optometrist listened carefully to what happened leading into my vision change, and he quickly tested the ability to focus in my eyes, and my actual vision. When completed he announced with absolute certainty, I have a TBI, and I needed to see a neruological optometrist, who would be able to confirm the diagnosis, and hopefully get some of the things started that we needed to get in place. I expressed my concern for his certainty, and he explained the inability of my eyes to focus, was the 2nd most common symptom for people with reoccurring TBI’s that had been undiagnosed or misdiagnosed.

We couldn’t believe it, it made sense. It explain everything, and it even explained why I was so quick to anger suddenly and had no patience, something that is unusual for me. I have always had the patience of a saint, or so I’m told. I had two disabled children, and raised them full time as a single mom until my fiancé came into the picture, and we blended our families. I was active in my community, my home was spotless, I worked over 70 hours a week, did laundry, housework and meals for a family of 6, while my fiancé worked long hours and was hardly home to help. Then I had a medical issue in August, which resulted in me being overdosed with pain medication while admitted to the hospital, another possible TBI, then we had covid in October, my personality changed after we had covid. I was no longer the same person I had been, I was miserable, angry and quick to lose my temper. I couldn’t keep up with the housework, the kids, work, nothing. By January I was often confused by simple tasks and couldn’t complete anything from start to finish, I was in increasing pain, struggling to walk. Then I was slammed down on a table by medical staff and had my neck hyper extended and having impact on the back on my head, another TBI. Then everything got worse and worse and worse. Still today, it seems I have more bad days than good while we navigate this, but we now have answers and treatment options. The light started to shine in my life again. I treasure the moments of authenticity, when I’m lucid and seem like my old self, but then I’m slapped with the harsh reality, that I’m not myself. I can’t walk, I can barely communicate, I can’t get to the toilet or prevent myself from soiling my pants. I can’t sleep with my fiancé, not sexually or even physically.

From there I get angry, so angry. I’m so angry because if I hadn’t gone to an eye doctor, I likely wouldn’t have any more information about what’s happening and I wouldn’t have the treatment options before me that I currently do. Then I get angry again, because why would my “mother” do this? Why? Why? Then it hits me, she did this, because she too is sick, but in a different way. You see, she’s also an addict, she’s also mentally ill. She enjoys having a sick child, she enjoys having other peoples sympathy. She is mentally unwell. And because of that, I suffered horrible acts of child abuse, that I couldn’t begin to explain. It leaves me with this distrust of my own body. This distrust makes me prefer that she’s right, I’m crazy instead of being abused. I would rather that, because you know what? If I was just crazy, they could lock me away and medicate me, I wouldn’t have to face the trauma I’ve endured and heal it. I wouldn’t have to try to break generational cruises, and I wouldn’t feel the need to speak out and change things, which gives her the ability to speak out as well, meaning I’ll undoubtedly have to come face to face with my abuser again. Something I would happily give my arm or hell even a kidney to not have to do. I never want to see the face of the woman responsible for stripping me of all my dignity, ever again.

I struggle with the ability to grasp my situation, I want to say just that. I flip between believing what several medical professionals have told me, which is that I’m a victim of serious childhood abuse and neglect, which literally changed the trajectory of my life. I want to say this one more time, mostly for me to be reminded as I write this entry, that my mother has verbally and physically abused me, used me as a source for multiple controlled substances, and then, choose to ignore the warning signs of a TBI in a 16 years old simply becaue it wasn’t going to keep her drug supply up. Can you say Munchausen Syndrome,”Mother”?

So believe me, when I tell you, I question every second of this, I question if I’m certifiably nuts and a liar and then I question how stupid could I be to have believed her? Why didn’t I see the signs when the 5th psychologist refuted all my prior diagnosis and replaced them with anxiety, depression and complex post traumatic stress disorder? Why didn’t I see what she was doing sooner? Why didn’t I cut her off sooner? Why didn’t I continue to assert I was ill medically, not mentally? The unfortunate answer to that question is, because I was sick and scared and trusted my mother to do what was best for me, just as so many abuse children do.

I don’t know what’s going to come of this all, but I do hope, it brings change to the world of medicine. I hope it puts the power into a 16 year olds hands to speak to their provider directly and ask questions. I hope it puts into place harsher penalties for abusers, of any form. I hope I find healing and feel better able to speak the truth of what I’ve experienced, and how much it’s truly effected every aspect of my life. My relationships, my children, my career, my home everything was effected by her one choice to not follow through with medical care.

I just want a change.

With love & light

Life as a HandiMom

A handicapped moms journey in motherhood

#medical malpractice #medical trauma #childhood abuse #childhood trauma #abuse recovery #munchausen #trauma survivor #traumatic brain injury #brain injury #childhood neglect #medical neglect #medical negligence #mental abuse #mentalheathawareness #caregivers

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