I’ve been wanting to post a medical update for awhile. Let’s see if I have it in me…. And if I remember any of this chaotic year in enough detail to do so … 
Where did we leave off? I was able to acquire medical transport (an ambulance) to an oral surgeon in June. As you can imagine, they were slightly freaked out by me there with 2 emts and my husband. My once perfect teeth now need surgery…. But… the surgeon said it’s risky with my condition and she will only do it in hospital. So, we also got me to a dentist. They were awesome. Very responsive to what I deal with. I need at least 4 visits of work plus a surgery…. But… no one will touch me because they are waiting on an ok from cardiologist and he won’t give it.
So, I saw a cardiologist, and he was surprisingly incredible and documented that I have severe autonomic dysfunction and he wrote Lyme disease too which surprised me. He isn’t so sure enough was ruled out with Lyme testing etc back in 2017 so he personally called Cleveland Clinic, twice without me asking and asked for me to see a autonomic neurologist stat and a cardiologist and a neurologist.
So, I finally made my way to Cleveland Clinic with volunteers and a van and lots of funny stories and it was a very expensive waste of s trip. Even with my cardiologist calling in, nothing happened. They can’t get me into autonomic neurologist until 2025. Same with cardiologist etc. I was able to grab a July opening with A neurologist. He was not a good neurologist. Understatement. I’ve waited years to see a neurologist. YEARS. Lost the ability to walk. Bathed by nurses and aides. You know. On and on. Annnddddd, I made my bullet point list. Super conservative. Don’t talk about Lyme. Stick to the basics etc. and stay alive ha. This was much too much on my body. Will get to that in a second.
So, he’s a German man and walks in the room and is somewhat aggressive from the get go. I adjust my energy realizing what I’m encountering. He literally didn’t even hear me speak before he began giving me orders and scolding me etc. I started telling him how er drs want it exploded why I keep going into lactic acidosis and metabolic acidosis and I lost the ability to walk. Basic facts. And he goes stop, stop stop. You need to tell me things about why you are here.
Um. Ok.
And he just started getting jumpy and gaslighting me and basically deflecting anything I said. No matter how neutral. I was questioned at times like a police officer would. He even said what, you still think you have Lyme disease? I did not even say anything about Lyme. He saw the cdc positive result on my file. And I responded no, I don’t (white lie, I’m not going into that territory with this fool) and he said let me guess you think your endometriosis was caused by Lyme too. Again, I wouldn’t play into his aggression (at the system, he must feel so helpless to take it out in his patients) and I said no, of course not. Like I was at a school lunchroom table with a bully. The guy was absolutely wild. I can see why he was so easy to get into. He said I do not need a spinal mri. He said no tests will tell us much because I have complex pain syndrome. My friend said but she doesn’t have much pain. Her main complaint is neurological and possibly endocrine issues. He said no no no…, look at her she’s in so much pain.
and proceeded to press into my adrenals until I almost saw red. I quite obviously have an undiagnosed adrenal disease. This is obvious. A cardiologist and multiple er drs have said I do most likely but need speciality testing. I just privately tested my acth and cortisol this summer and both are low. I didn’t even tell him because he simply. Wouldn’t let me talk and wasn’t receptive. He said I don’t have an adrenal disease. With no testing. He said I didn’t lose ability to walk and my friend said yes, she very much did. Her motor coordination is off, I have ataxia diagnosis in my old hospitalization records and on and on…. Like many falls back when I still could. He said it’s connected to. Endometriosis most likely 
and complex pain syndrome.
I. Shit. You. Not.
Keep in mind, I never once even complained of gynecological issues. I was basically backed into a corner and told that it was my root cause. Because I had a mild case found during an exploratory surgery in 2013. And…. It was so insane that I only attempted to question his stance a few times. And he kept grabbing his head saying what to do with a patient like you…. He said I’m one of the most complicated neurological cases in existence. With no testing. None. He tested my reflexes and said my right side is worse than my left but wouldn’t speculate on why it’s documented I have no reflexes ankles under etc.
Like, this has to be a bad joke.
Aaaandddd, again, it’s not. We waited for 3 weeks to see the notes of my visit and he wrote after THREE weeks for a requesting physician to request notes and he will provide them
sooooo, this was great fun. He won’t even let me see my notes. A expensive trip for NOTHING. He did finally decide to order a head only mri and a long eeg but they could not do them for me while I was out there. He told me not to get them done locally…. But what are my options????
So I have now scheduled to get these tests at LEAST 3-4 times. Plus medical transport to them which is $380 a pop. And so much keeps going haywire. For one, both days I’ve had mri scheduled I receive a phonecall from hospital that their mri machine is malfunctioning. And it goes on and on. So, I’m in limbo. Have you ever, in your life… met someone who has tried to get a mri harder than me in 7 years??
I think mostly no.
I was returned half alive.
After 3 hours laying in van, my gut and bladder motility all start shutting down. Thought I was going to need a catheter. Ugh. And eating my purée was becoming scary hard. And my respiratory autonomic function became concerning at times and new coughing. And gasping for air began. So, some friends helped me acquire a portable o2 machine. FINALLY. Bless their hearts. It was intimidating and I was hoping to go through. A dr but this works for now and it really is assisting me. It’s so upsetting drs have not given me access to this previously.
Anyways, I was in rough shape when returned and the good news is my nurse friend was here and surprised me and helped carry me in bed with everyone and waited by my side until I came to it and made me a shake. I had a small seizure type episode or 2 during this trip too. I awoke from it with tears streaming down my face and she just held my hand. She felt like a mother. And I kinda need a mother Somedays it turns out through all of this. Bless everyone who supported me through this journey, you know who you all are and I thank you guys. This was not an easy trip.
Things I’ve decided since:
I’m not ok with partially dying to try to obtain medical help anymore. These guys have mostly lost my trust at this point. It’s not worth it. My quality of life is more important at this point. Any dr that sees a woman has been laying in her bed for 7 years and can’t bathe herself and doesn’t hospitalize her or order stat tests….. is insane in my book. I cannot logically make sense of why you wouldn’t treat this more serious.
His diagnoses were unknown central nervous system demylenation disease and seizure disorder. He referred me to an epilepsy neurologist. And no, he did not discuss his diagnoses with me. We saw them on printed paper afterwards. His diagnoses got me in with a specialist neurologist that focuses on transverse myelitis and infection and autoimmune issues and university of Chicago. So that’s one silver lining of this jack off. I decided I can’t afford to go back to Cleveland Clinic. Physically or financially. It is highly suspected by some in my circle that I had transverse myelitis and it was missed in 2017. But I survived. Kinda. It’s upsetting, because if this is so, there are medications that can assist this at onset in ER. But my case was never taken seriously. You guys know that. Proper testing was never performed.
It’s 2024 and I remain mostly untested neurologically. Never been offered a spinal tap, a spinal mri, no eeg. Etc. Until the eeg past few months I was offered.
Anyways, due to so many testing attempt complications, I have decided to stop trying to reschedule for the 4th? Time and see what this new specialist says. Maybe he will have more sense snd try to arrange a full mri and some other stuff. Because we are financially hurting from my medical bills etc this year. A local church is going to try to do a fundraiser for me in October…. But idk. Bless their hearts for trying
Wild times.
But you guys kinda know how it goes with me at this point by now….
So, I have had dental infections that no one will touch. Cardiologist said he won’t even give clearance for local and definitely not surgery because he suspects I have serious autonomic dysfunction and he said it can be dangerous in surgery. I don’t know. Oh snd im allergic to most antibiotics and keep having dental infections with these 3 decaying teeth. And abscesses. And it’s nuts. I’ve tried getting dentist oral surgeon etc to do anything but thry mostly won’t and keep telling me they need cardiologist. Which I understand So, out of desperation, I’ve turned to my homeopath which has saved my life more than once and she has had me on multiple things for chronic infections and the last month she’s really helped get the one abscess down immensely (might just be scar tissue left) with a sepsis combo. Never in my life did I think homeopathy would save me from a potentially serious infection.
Whew, this is long.
But a lot had to be said.
So, some forward movement but mostly not
it was nice to get outside in the ambulances so much! I dyd become a bit triggered being stuck back in here after all my outings!
University of Chicago neuro in a few weeks. Then a call with my medical advocate to cardiologist soon to attempt to get some more movement and then some testing from both I’m sure.
Something I don’t speak of often bc I’m usually busy venting about my feelings and medical woes is I’m a busy mother. Yes. A bedridden mother can be busy? Quite! I’m a secretary and chef in bed and homework afficiando and medical advocate for my son who is getting into Air Force (and all the crazy testing he’s needed). And yeah…, life is rather busy with these two kiddos
which I’m grateful. I was quite too severe a few years back to tackle some of these things. It’s dicey. And messy. And pacing. And crashing. But, I’m going into quality of life territory lately as I said and kinda leaving the neverending medical drama for now.
What has allowed me to (knock on wood) mostly stop the seizures that were really becoming an issue post spring covid? And the severe state I was in afterwards? Upping my beef adrenal to 2 capsules a day after a dream and one beef thyroid capsule a day. Life changing. No cure for me but has really assisted my severity level for now
Sending love to y’all
* the hotel photo is the first time I’ve stayed the night anywhere but a hospital in EIGHT years. Given the hotel was attached to a hospital
Where did we leave off? I was able to acquire medical transport (an ambulance) to an oral surgeon in June. As you can imagine, they were slightly freaked out by me there with 2 emts and my husband. My once perfect teeth now need surgery…. But… the surgeon said it’s risky with my condition and she will only do it in hospital. So, we also got me to a dentist. They were awesome. Very responsive to what I deal with. I need at least 4 visits of work plus a surgery…. But… no one will touch me because they are waiting on an ok from cardiologist and he won’t give it.
So, I saw a cardiologist, and he was surprisingly incredible and documented that I have severe autonomic dysfunction and he wrote Lyme disease too which surprised me. He isn’t so sure enough was ruled out with Lyme testing etc back in 2017 so he personally called Cleveland Clinic, twice without me asking and asked for me to see a autonomic neurologist stat and a cardiologist and a neurologist.
So, I finally made my way to Cleveland Clinic with volunteers and a van and lots of funny stories and it was a very expensive waste of s trip. Even with my cardiologist calling in, nothing happened. They can’t get me into autonomic neurologist until 2025. Same with cardiologist etc. I was able to grab a July opening with A neurologist. He was not a good neurologist. Understatement. I’ve waited years to see a neurologist. YEARS. Lost the ability to walk. Bathed by nurses and aides. You know. On and on. Annnddddd, I made my bullet point list. Super conservative. Don’t talk about Lyme. Stick to the basics etc. and stay alive ha. This was much too much on my body. Will get to that in a second.
So, he’s a German man and walks in the room and is somewhat aggressive from the get go. I adjust my energy realizing what I’m encountering. He literally didn’t even hear me speak before he began giving me orders and scolding me etc. I started telling him how er drs want it exploded why I keep going into lactic acidosis and metabolic acidosis and I lost the ability to walk. Basic facts. And he goes stop, stop stop. You need to tell me things about why you are here.
Um. Ok.
And he just started getting jumpy and gaslighting me and basically deflecting anything I said. No matter how neutral. I was questioned at times like a police officer would. He even said what, you still think you have Lyme disease? I did not even say anything about Lyme. He saw the cdc positive result on my file. And I responded no, I don’t (white lie, I’m not going into that territory with this fool) and he said let me guess you think your endometriosis was caused by Lyme too. Again, I wouldn’t play into his aggression (at the system, he must feel so helpless to take it out in his patients) and I said no, of course not. Like I was at a school lunchroom table with a bully. The guy was absolutely wild. I can see why he was so easy to get into. He said I do not need a spinal mri. He said no tests will tell us much because I have complex pain syndrome. My friend said but she doesn’t have much pain. Her main complaint is neurological and possibly endocrine issues. He said no no no…, look at her she’s in so much pain.
and proceeded to press into my adrenals until I almost saw red. I quite obviously have an undiagnosed adrenal disease. This is obvious. A cardiologist and multiple er drs have said I do most likely but need speciality testing. I just privately tested my acth and cortisol this summer and both are low. I didn’t even tell him because he simply. Wouldn’t let me talk and wasn’t receptive. He said I don’t have an adrenal disease. With no testing. He said I didn’t lose ability to walk and my friend said yes, she very much did. Her motor coordination is off, I have ataxia diagnosis in my old hospitalization records and on and on…. Like many falls back when I still could. He said it’s connected to. Endometriosis most likely and complex pain syndrome.I. Shit. You. Not.
Keep in mind, I never once even complained of gynecological issues. I was basically backed into a corner and told that it was my root cause. Because I had a mild case found during an exploratory surgery in 2013. And…. It was so insane that I only attempted to question his stance a few times. And he kept grabbing his head saying what to do with a patient like you…. He said I’m one of the most complicated neurological cases in existence. With no testing. None. He tested my reflexes and said my right side is worse than my left but wouldn’t speculate on why it’s documented I have no reflexes ankles under etc.
Like, this has to be a bad joke.
Aaaandddd, again, it’s not. We waited for 3 weeks to see the notes of my visit and he wrote after THREE weeks for a requesting physician to request notes and he will provide them
sooooo, this was great fun. He won’t even let me see my notes. A expensive trip for NOTHING. He did finally decide to order a head only mri and a long eeg but they could not do them for me while I was out there. He told me not to get them done locally…. But what are my options????So I have now scheduled to get these tests at LEAST 3-4 times. Plus medical transport to them which is $380 a pop. And so much keeps going haywire. For one, both days I’ve had mri scheduled I receive a phonecall from hospital that their mri machine is malfunctioning. And it goes on and on. So, I’m in limbo. Have you ever, in your life… met someone who has tried to get a mri harder than me in 7 years??
I think mostly no.
I was returned half alive.
After 3 hours laying in van, my gut and bladder motility all start shutting down. Thought I was going to need a catheter. Ugh. And eating my purée was becoming scary hard. And my respiratory autonomic function became concerning at times and new coughing. And gasping for air began. So, some friends helped me acquire a portable o2 machine. FINALLY. Bless their hearts. It was intimidating and I was hoping to go through. A dr but this works for now and it really is assisting me. It’s so upsetting drs have not given me access to this previously.
Anyways, I was in rough shape when returned and the good news is my nurse friend was here and surprised me and helped carry me in bed with everyone and waited by my side until I came to it and made me a shake. I had a small seizure type episode or 2 during this trip too. I awoke from it with tears streaming down my face and she just held my hand. She felt like a mother. And I kinda need a mother Somedays it turns out through all of this. Bless everyone who supported me through this journey, you know who you all are and I thank you guys. This was not an easy trip.
Things I’ve decided since:
I’m not ok with partially dying to try to obtain medical help anymore. These guys have mostly lost my trust at this point. It’s not worth it. My quality of life is more important at this point. Any dr that sees a woman has been laying in her bed for 7 years and can’t bathe herself and doesn’t hospitalize her or order stat tests….. is insane in my book. I cannot logically make sense of why you wouldn’t treat this more serious.
His diagnoses were unknown central nervous system demylenation disease and seizure disorder. He referred me to an epilepsy neurologist. And no, he did not discuss his diagnoses with me. We saw them on printed paper afterwards. His diagnoses got me in with a specialist neurologist that focuses on transverse myelitis and infection and autoimmune issues and university of Chicago. So that’s one silver lining of this jack off. I decided I can’t afford to go back to Cleveland Clinic. Physically or financially. It is highly suspected by some in my circle that I had transverse myelitis and it was missed in 2017. But I survived. Kinda. It’s upsetting, because if this is so, there are medications that can assist this at onset in ER. But my case was never taken seriously. You guys know that. Proper testing was never performed.
It’s 2024 and I remain mostly untested neurologically. Never been offered a spinal tap, a spinal mri, no eeg. Etc. Until the eeg past few months I was offered.
Anyways, due to so many testing attempt complications, I have decided to stop trying to reschedule for the 4th? Time and see what this new specialist says. Maybe he will have more sense snd try to arrange a full mri and some other stuff. Because we are financially hurting from my medical bills etc this year. A local church is going to try to do a fundraiser for me in October…. But idk. Bless their hearts for trying
Wild times.
But you guys kinda know how it goes with me at this point by now….
So, I have had dental infections that no one will touch. Cardiologist said he won’t even give clearance for local and definitely not surgery because he suspects I have serious autonomic dysfunction and he said it can be dangerous in surgery. I don’t know. Oh snd im allergic to most antibiotics and keep having dental infections with these 3 decaying teeth. And abscesses. And it’s nuts. I’ve tried getting dentist oral surgeon etc to do anything but thry mostly won’t and keep telling me they need cardiologist. Which I understand So, out of desperation, I’ve turned to my homeopath which has saved my life more than once
and she has had me on multiple things for chronic infections and the last month she’s really helped get the one abscess down immensely (might just be scar tissue left) with a sepsis combo. Never in my life did I think homeopathy would save me from a potentially serious infection.Whew, this is long.
But a lot had to be said.
So, some forward movement but mostly not
it was nice to get outside in the ambulances so much! I dyd become a bit triggered being stuck back in here after all my outings!University of Chicago neuro in a few weeks. Then a call with my medical advocate to cardiologist soon to attempt to get some more movement and then some testing from both I’m sure.
Something I don’t speak of often bc I’m usually busy venting about my feelings and medical woes is I’m a busy mother. Yes. A bedridden mother can be busy? Quite! I’m a secretary and chef in bed and homework afficiando and medical advocate for my son who is getting into Air Force (and all the crazy testing he’s needed). And yeah…, life is rather busy with these two kiddos
which I’m grateful. I was quite too severe a few years back to tackle some of these things. It’s dicey. And messy. And pacing. And crashing. But, I’m going into quality of life territory lately as I said and kinda leaving the neverending medical drama for now.What has allowed me to (knock on wood) mostly stop the seizures that were really becoming an issue post spring covid? And the severe state I was in afterwards? Upping my beef adrenal to 2 capsules a day after a dream and one beef thyroid capsule a day. Life changing. No cure for me but has really assisted my severity level for now
Sending love to y’all
* the hotel photo is the first time I’ve stayed the night anywhere but a hospital in EIGHT years. Given the hotel was attached to a hospital
