Not a pretty entry.
I have worked so hard for years to reach today. YEARS. And years and years…. And years.
I need assistance and I know this. I’ve been rejected left and right from medical community. In SO many ways. Despite mostly being kind, quiet and very cooperative.
In July, I made an appointment with a Dr. From a local hospital. I did what research I could but mostly it was a bag of chances. I live in Indiana after all. The amazing cardiologist I had in 2017 said after one of my hospitalizations, we have nothing for you here. Please, please go find a Lyme literate physician or naturopath and don’t look back. I’m so sorry this is the ugly truth. He really felt for me. His wife had Lyme. He knew what I was up against. I did not ….yet. He even called his internist friend at a large Indianapolis hospital as I begged for a transfer of rehab facility. Anything. I couldn’t feed myself. He spoke to her on phone in front of my mother and I in office. She said do not send her here. We will make her worse. Please send her in the right direction.
K. Twilight zone noted. Fast forward 6 years. I made the appointment. I bought a reclining wheelchair. I fundraised for myself (no family helped or donated) and bought myself a ramp. And a medical tarp. Then I told a few friends and family. I let them volunteer. I wanted no one responsible. 2 former emts volunteered, my dad has a van and offered to be the driver and a 3rd person volunteered. My husband said he has to work but last minute a friend called him and he seemed to have a change of heart.
So it was a big crew. And they did it. And I did it. I did amazing actually. Everyone around me was much more anxious than myself. Including the dr. I was so excited to get outside. It wasn’t easy. I was dropped twice but caught before my head hit the ground (reclining wheelchair issues, I was too far up and would topple. Once they moved me down, it seemed to improve that issue. They transferred me from tarp and my friend took vitals the entire 30 minutes. She even brought a medical bag. Unfortunately my vitals did not do great and kept stayed in the 80’s most of the trip. They contemplated stopping at sn Er to get me o2. It’s uncomfortable when my o2 is 85. Organs struggle. I gasp for air at times etc. but I really went inward and focused very well. I floated and let everyone take the reins around me.
We arrived at 4:20. My husband was amazingly helpful and chatty. A very rare state for him. My friends and family did incredible. I’m so blessed and trying to not go into guilt too much over it all bc my friend told me they want to be there for me. I deserve this. I’ve done such hard things and let someone carry me for awhile. My husband even told me tonight, you did amazing sunshine. He told my father, sunshine did way better than that dr. And my husband NEVER says these things to me. Ever. Never. Not at medical places especially. He never talks against most doctors. I wonder if he had a tiny change of heart today. I felt compassion in him. He became mildly distressed when the fixture became rough with me. It surprised all of us.
Ok. I needed this.
Because I’m incredibly tired of being strong and on my own. I need others at times. And that’s ok. I need emotional and physical support. That’s ok, sunshine.
My husband and emt friend went in drs room with me.
He walks in and was told nothing about my case. I never called to tell of my situation (I’ve been rejected multiple times doing this) and he never heard a word out of my mouth. He came in full fledge aggressive after seeing me. And he was aggressive to me 😭💔 it was one of the worst medical experiences of my life. And that says a lot. He looked at my chart before I said a word and he must had seen I was hospitalized for Lyme disease in 2017 AT HIS HOSPITAL. He said do you think you are one of those chronic Lyme cases? You are fine, sit up. In shock, this rhetoric continued and worsened.
He belittled me. Mocked me for not being able to do the neurological tests the way he wanted (keep in mind I’ve never had a spinal mri or spinal tap, these doctors SERIOUSLY messed up with me). I have lesions on my brain, my nurse friend thinks it’s likely I have transverse myletis that was missed and would be found on a spinal mri. This man looked at my file for 5 seconds and came at me hard.
He told me I did this to myself. He forced me to sit up. To the point that others in room became upset and said sir, she can’t do what you are asking. He made fun of me bc my arms didn’t work properly as he said I needed to grip something better and I said I’m doing my best sir, and he said no you aren’t. Knock it off. I was quickly running out of air. He had no o2 reading on me. My organs were becoming distressed and very painful. Hypoxia is not an easy situation if you’ve experienced it. I then lightly began crying because I realized I was going to go into seizure or worse eventually at the hands of this psychopath. I said this is all I can do. Please let me down. He said no. I want to see you pass out. I can revive you. And held my body up. I looked at my friend and said help me. Please help. I can’t breathe. He then released my body. I laid in fetal position on my chair, not well.
My husband said I’ve witnessed her have seizures etc. she’s not making this up. I appreciated this. He never ever says things like this and RARELY goes to medical things with me these days. So then he went after my husband (but not as hard as me) and he said this has been really difficult. We’ve been trying to get her help for years and doors are constantly shut on her. Dr scoffed at those comments. My husband gave an example where he took me to a big Chicago hospital and they released me and told me to see infectious disease dr and the night before a family member was getting ready to take me there (they took off work), dr personally called and told me he was canceling my appointment. He viewed my file. I don’t have Lyme. Except I was cdc positive last week in Indiana hospital and treated by infectious disease dr and interviewed by state of Indiana. He never saw me. I was never evaluated. It’s beyond insane. What if I had something rude not Lyme?!?! We will never know.
My emt friend told him my vitals were very low entire ride here. They averaged in mid 80s. He told her I was 89 and that’s normal. She said hmm, I didn’t know that. That’s not what they taught us in emt training.
He then sat me up again. I’m
Not doing well at this point. Crashing. Mildly confused etc. but silent. Only speaking when spoken to and in neutral ways. He stood behind me and wrapped his hands around my neck?!?! He gave me the most aggressive thyroid check I’ve ever seen. My neck is still sore tonight.
He poked and prodded me emotionally over and over. Saying oh I bet you don’t like my answer because you like to do whatever you want and lay in a bed for 5 years. You did this to yourself. You are fine.
I then stated I’m sorry sir. I’m doing my best but everything collapsed rather quickly as I lost ability to walk and began having organ issues. I said FOUR ER doctors have suggested I have adrenal issues and need specialty testing. He said you are lying. Do not lie in my office. I said I’m sorry, what? He said I’m looking at your file and the notes say possible adrenal issues. You would be dead if you did. So you don’t. Stop making stories up. I’ve literally never been given proper adrenal testing. And the one cortisol test I was given in hospitalization, was not appropriate testing a cardiologist told me.
I then told him a volunteer nurse helps care for me and wonders if transverse myletis is part of my picture. Keep in mind…. I’ve. Never. Had. A. Spinal. Mri. Ever. They made huge mistakes. I. Need. A. Spinal. Mri.
He actually had the audacity to say that’s not possible. I would have no function in my legs. Well I have very little function in my legs, obvious motor function and neuro issues and it can’t exactly be ruled out yet. He told my husband and friend I can sit up for car rides and should be forced to. He told them to not mind me if I cry, I have prevented my own treatment and I can sit up and if I pass out they will revive me.
What he said was so atrociously and dangerously incorrect, that I cannot even begin to process how you tell a woman with nothing but er visits. Ambulances TO and FROM since 2019, that she’s fine. She’s ok. He literally took no testing today. Oh my dear god, how can such evil exist?
On and on. He made this last an hour. Was supposed to be a 30 minute appointment.
I’m not ok tonight.
This has triggered deep ptsd in me. To have his hands on me like that. To be so aggressively treated …. For what? I dyd nothing to this man. Absolutely nothing. I was a threat to him for simply breathing. I’m something that shouldn’t exist he’s taught in medical schools. I’m a psychiatric case…. Except I’m super calm. Calmer than him. Very level headed except when you cut off my o2. I’m going to beg to breathe. Way our bodies are made, nothing personal.
I’m broken tonight you guys 😭😭😭😭😭😭
I’m crushed. I’m shattered. Every last hope I had for receiving help has been…obliterated. It went so much worse than even my worst case scenario in my head.
I cannot understand what happened for that man to treat me as he did. I have next to no diagnoses. Not exactly my fault. I’ve tried over and over again.
He told me I’m not allergic to what I think I am. Even though my lips and throat swelled if I ate outside of my 7 foods for 3 years. Even though my lips swelled almost shut 3 weeks ago.
I have made so many baby steps past year. I’m so proud of myself. Today, felt like a giant slap on the face. A giant push off the mountain. I’m alone. As always. No one is coming.😭🙏 no one cares. 😭 💔 No palliative care. No living hospice. No home health. No anything. He wants to send a social worker to my house, even though I was so presentable and clean and cute and impeccable manners and my husband and friend were in suits etc from work. My nurse friend has already warned me to not let social services in. We know where this is going. He thinks I’m a psych. Case. Yes, social services can be involved to assist in difficult situations and navigating best steps but obviously this is a different story. This guy doesn’t believe I’m ill even with zero tests. Even with two people close to me saying something isn’t right with her physically. But, he thinks, this is a psychiatric illness. Making me stay in bed. So now I have to not only process the ptsd and the fact that one of my last chances for help was obliterated…. I now have to watch out for this guys next steps with me.
My heart burns and breaks for our community today. What we face. We are some of the bravest people I’ve ever met. To be so close to death so often and somehow prevail. Our treatment is so horrific, I cannot actually process it right now. I’m in shock. I keep feeling his hands 😭 he was so mean. He didn’t even know me. Why did he hurt me?