Medical update

My prayers go out to you. The information on your deductible and health status is so upsetting.

If it's medevac, I would think they would have proper oxgen on board for you, or could be informed in advance of what they need to have on hand for you. I think you will have to trust God on getting to Mayo.

Keep up that optimism for Mayo, if you can. And when you are up for it, keep us posted.

Our shoulders are yours to cry and vent on, sunshine. Anytime, anywhere.

There just are no words . . . .

I would get tired of people telling me how useful I am to them. How nice.

I pray you get the help you need. I'm so sorry the ship is sailing this way.

Oh, @sunshine44

I know, first hand, how scary it is when you are having an acute health crisis that you know, without a shadow of a doubt, is plunging you so deep down below your baseline level of "health" that it feels like you may never regain what you've lost.

You can.

You will.

🤗 ❤️

Aww, Hon. This is so disheartening. I'm so sorry. Praying for your situation.
Can they arrange for a nurse to give you an IV at home? Are they going to issue you an oxygen concentrator?

I know. Maybe you won't be able to answer right now and that's okay because you need to rest.

We're just concerned.

If they manage to arrange medivac as Faith said, have them mention that you need oxygen although I would think they have that available anyway.

Edit: Maybe their gonna try it through a service like this which lists some options for, "Free and Discounted Medical Transportation Options." I hope.

https://angelflightwest.org/news/resources/free-and-discounted-medical-transportation-options/

https://wingsofhope.ngo/us-medical-transport/

💗

I'm here for u dear sunshine sister and friend xx u could get someone to call a local church minister in if u wanted that to come in daily or wharever u wanted.
U need comfort and love and anyway that can happen is needed.
Maybe it's time to let go of trying and focus on loving your inner girl as much as u can.. Icomfort in the v v difficult.
You've been trying and actioning for so long I can't even comprehend the utter exhaustion u feel from that (I have my own form of it) as well as your body so so critically unwell.
Xx if I could be there I bloody well would be.
Medical care has let u down and it's not your fault, really not, u have fought for so long.. Please honour u...

There may be a final shift and move in treatment and if there is let it happen...
But I really feel pushing yourself more isn't kind for u xx 💖 🙏 🤍
Here if want to dm

Emmarose47 said:

I'm here for u dear sunshine sister and friend xx u could get someone to call a local church minister in if u wanted that to come in daily or wharever u wanted.
U need comfort and love and anyway that can happen is needed.
Maybe it's time to let go of trying and focus on loving your inner girl as much as u can.. Icomfort in the v v difficult.
You've been trying and actioning for so long I can't even comprehend the utter exhaustion u feel from that (I have my own form of it) as well as your body so so critically unwell.
Xx if I could be there I bloody well would be.
Medical care has let u down and it's not your fault, really not, u have fought for so long.. Please honour u...

There may be a final shift and move in treatment and if there is let it happen...
But I really feel pushing yourself more isn't kind for u xx 💖 🙏 🤍
Here if want to dm

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💗💗💗

Any chance you could have an appointment with Mayo by doing a video call or phone call? Not ideal of course, but at least it could start the ball rolling.

andyguitar said:

Any chance you could have an appointment with Mayo by doing a video call or phone call? Not ideal of course, but at least it could start the ball rolling.

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Good idea. My GP just emailed today that she just finished submitting all the referral paperwork to Mayo. And that I should be hearing more soon on next steps. If they accept this, I don’t have to wait 3 months to get into Mayo post covid.

sunshine44 said:

If they accept this, I don’t have to wait 3 months to get into Mayo post covid.

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Sounds good. Also I'm thinking that if they (Mayo) need any tests done like MRI and bloods ect, they could be done at a clinic/hospital near to you and sent to Mayo rather than you having to travel all that way.

andyguitar said:

Sounds good. Also I'm thinking that if they (Mayo) need any tests done like MRI and bloods ect, they could be done at a clinic/hospital near to you and sent to Mayo rather than you having to travel all that way.

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Unfortunately I’m much too fragile and it’s quite hard for my family and friends to get 4 people off of work to take me by medical tarp to each dr/test etc. plus, we’ve found not all drs offices are open to the state I’m in. And have no idea what to do with someone with so few diagnoses and so disabled. And, none of the neurologists in my small town area are versed in dysautonomia so that’s a dead end. The home nurse was confirming yet again last week that her 2 dysautonomia patients have to go to an out of state neurologist.

hence, why we are trying to get me into Mayo at this point for the correct tests on my adrenals, spine etc that have never been ordered.

Also, these people had SEVEN YEARS to order the correct tests around here. For instance, a local friend with Lyme recently had vision disturbances and called an ambulance and was immediately given an mri and mra during hospitalization that night. One week ago. Yet, I’ve lost ability to walk, have had seizures and many many vision disturbances as well as other things and I was given one brain mri in 2017 back when I could still walk. When I shared it with rush hospital in Chicago a week later during hospitalization, they wouldn’t even accept it. Said it was too poor quality. They wanted a new one outpatient. So, I scheduled an appointment with rush infectious disease Dr as directed since I was told that was highest priority but not in hospital and was called personally by dr night before and told to not come to appointment, that he couldn’t help me and I don’t have Lyme. Even though state of indiana interviewed me week prior for cdc positive Lyme disease and I had infectious disease dr in Indiana treating me in hospital with iv rocephin right afterwards. Then another neurologist said they wouldn’t take my insurance. When I was in hospital they would but they told me to see them outpatient. Then my cardiologist who was awesome said your case is too complicated I’m referring you to my colleague and their office manager called week before appt and said they couldn’t accept my case! When I asked why they said they couldn’t do proper tests with me in wheelchair. Back when I could still sit up for small amounts of time for car rides etc.

The stories go on and on…. What I’m trying to say, is it’s honestly absurd how they let me go this long with so little testing or assistance. Part of it is the crappy insurance I had.

So, I’m attempting to get assistance from an autonomic neurologist that can at minimum diagnosis what kinds of dysautonomia I have. The last er dr said there are so many and we don’t have much access to that testing or proper endocrine testing someone like me needs here.

This is going to be interesting. I’m quite fragile now since covid. And I was already fragile. But I’m trying to trust.

I’m attempting to get proper diagnosis’s so these drs in my area have something to go off. Because they are literally all clueless we’ve found.

I also feel I should be given an immunologist. Since I keep getting strange lengthy fevers past few years during bugs. Amongst other things. So, I just need their help.

I am wearing a holter monitor for 14 days right now as er dr said that will help Mayo upon entrance. If I get in.

almost said:

Our shoulders are yours to cry and vent on, sunshine. Anytime, anywhere.

There just are no words . . . .

I would get tired of people telling me how useful I am to them. How nice.

I pray you get the help you need. I'm so sorry the ship is sailing this way.

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Thank you so much. This means so much.

Faith2007 said:

My prayers go out to you. The information on your deductible and health status is so upsetting.

If it's medevac, I would think they would have proper oxgen on board for you, or could be informed in advance of what they need to have on hand for you. I think you will have to trust God on getting to Mayo.

Keep up that optimism for Mayo, if you can. And when you are up for it, keep us posted.

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Thank you so very much. I think you are right. 🙏

Zebra said:

Oh, @sunshine44

I know, first hand, how scary it is when you are having an acute health crisis that you know, without a shadow of a doubt, is plunging you so deep down below your baseline level of "health" that it feels like you may never regain what you've lost.

You can.

You will.

🤗 ❤️

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I needed this.

Thank you.

I do hope.

🙏💗

I know we've been texting so I'll keep this short, for both our sakes. Pouring rain again, 29.20 Barometric pressure, wind is moving in, PoTS is acting up, eyesight is gone, full body pain levels have spiked, dizzy as a drunkard on the Disneyland Tea Cup ride! But none of it compares to your levels of misery these past 6 weeks... and far longer taking everything into account.

Prices are up there, but with the one I have I find it to be worth it. Perhaps you know people, even a go fund me thing that might help with the cost?

This is a great site where I've purchased medical gear before.
https://www.medicaldepartmentstore.com/Portable-Oxygen-Concentrators-s/33.htm

Nord Wolf said:

I know we've been texting so I'll keep this short, for both our sakes. Pouring rain again, 29.20 Barometric pressure, wind is moving in, PoTS is acting up, eyesight is gone, full body pain levels have spiked, dizzy as a drunkard on the Disneyland Tea Cup ride! But none of it compares to your levels of misery these past 6 weeks... and far longer taking everything into account.

Prices are up there, but with the one I have I find it to be worth it. Perhaps you know people, even a go fund me thing that might help with the cost?

This is a great site where I've purchased medical gear before.
https://www.medicaldepartmentstore.com/Portable-Oxygen-Concentrators-s/33.htm

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Thank you, wolf.
I appreciate everyone’s support so much.
I did reach out to my cranial sacral therapist as you suggested and might be doing a session with him next Thursday 🙏

Also, I found this with the yin energy you were talking about replenishing.
I had moments of stabilizing vitals overnight and this am but today has been another shitshow.

I went to purchase an o2 machine but my nurse friend said it needed a prescription from the website you gave me. She’s obviously incorrect if this is where you bought yours from and I am going to look into this again.

***** an update to everyone, I was approved for a medvac angel flight via the kind souls that attempted to get it together. Unfortunately my friend was incorrect and the foundation won’t cover it and it’s a $20,000 price tag ONE WAY. So, that’s out.

I’m going to take a rest from thinking of next steps and attempt to stabilize better bc right now I feel I’m failing at it mostly.

Home health nurse comes out tomorrow.

Gut motility is super fucked after covid in new ways I’ve not experienced before as well as chest congestion issues still and small fevers wrecking my autonomic nervous system amongst other things. So now eating is a new level difficult process.

Looking impossible but you guys help me remember, maybe it’s not. During my worst moments, which are many anymore, I’m constantly reminding myself of this.

Thank you, everyone 💛

sunshine44 said:

I went to purchase an o2 machine but my nurse friend said it needed a prescription from the website you gave me. She’s obviously incorrect if this is where you bought yours from and I am going to look into this again.

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Odd, they appear to have changed their policy and now do require a prescription. How absurd! Your NP won't write you a script for an O2 machine??? She has commented how much you should have supplemental O2...

Nord Wolf said:

Odd, they appear to have changed their policy and now do require a prescription. How absurd! Your NP won't write you a script for an O2 machine??? She has commented how much you should have supplemental O2...

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Because I live in the f***** twilight zone. Seriously, nothing makes sense. I asked her but she said we need to start with iv fluids, getting into Mayo Clinic and home health care. But…. You know how this is all moving along. Not easily. I can tell you that much.

I will attempt to ask nurse if she can place a request for a rt evaluation.

You can buy them on Amazon without a prescription. All other medical suppliers seem to require prescriptions now for O2 concentrators, but I didn't see that requirement buying through Amazon.
https://www.amazon.com/s?k=oxygen+concentrator&crid=11KU7X5WKQRUP&sprefix=,aps,97&ref=nb_sb_ss_recent_1_0_recent

They are also cheaper on Amazon. The ones on official medical supplier websites are FDA approved to "treat" certain conditions, so that automatically drives up the prices and requires prescriptions. The ones not FDA approved, but that do all the same things as the FDA approved ones, don't need a prescription and are lower in cost. Mine is not FDA approved so didn't require a prescription. Also I bought mine prior to covid when O2 machines were only $250.00...

Update.

It all fell apart.
My fault for having expectations.

Had nurse out once this week, today. Supposed to have her here 3 times a week dr said. Not at $399 with no fluids. She said it could be a small infection in larynx but not sure. If fevers are that or my weird immune system issues. What else…. She had me call dr. Dr emailed and said they really don’t know what’s going on and to try to tough this out with fluids and use spirometer and she referred me to Mayo so get there asap. She said she’s really not sure what this is. At least she’s honest.

My nurse told me to call a portable o2 company to supplement when needed. Don’t need a prescription. I asked her if I could utilize a RT assessment but her and dr seemed uninterested. It’s like so many want to pass my case to someone else. I cannot understand. Like what am I paying $399 a visit for. Ugh. She’s so nice though. Her heart hurt around me. She’s like I cannot imagine how scary your life is like this and your drs office hasn’t been returning my phonecalls. So, I felt her empathy and used some energy to shed a few tears. Not many. But enough. And thanked her. She feels so helpless. She’s like let’s get you in Mayo asap. They will definitely hospitalize you.

So, I called o2 company she told me doesn’t need a prescription, they do need a prescription. Not sure dr will give it without knowing what form dysautonomia I have. I’ve requested but so far she’s been silent. Looks like someone found me one I can possibly purchase from Amazon. Kinda need portable though. Will see.

Called Mayo as nurse advised me to. They said they do not consider severe dysautonomia an emergency situation and dr referred me as outpatient. So, that kinda ends all my hard work for now folks. The system is broken… and I can’t fight it anymore right now. I cannot fathom… how a woman who lost the ability to walk, no spinal mri, has swallowing and breathing issues upon turning her head, has a history of small seizures witnessed by husband and children, whose vision goes black with quick temp rises and unstable vitals and mast cell activation disease with anaphylaxis and mouth swelling….. is not considered a urgent situation to figure out. Ohhh, and I have quite a few labels and abnormal blood tests like lactic acidosis, leukocytis, sky high crp, elevated ptt and clotting crap and other stuff.

So, I asked two different people how they expect a woman only transferred by ambulance and teams of volunteers to stay in a hotel and do 8 days of strenuous testing in multiple locations. They had no ideas. Nearly 6 hours away. Even if 4 people could get 8 days off and transfer me all day long to everything, my body likely could not withstand that even pre covid level. And no I don’t have 3-4 people that can do this!! So, I asked if I could have a tele health appt with a neurologist to asses my situation. Remember, we have no idea what type of dysautonomia I have or if there is spinal damage …and was told no, they don’t do first appointments tele health. She very cheerily told me if I changed my mind, I have 90 days to schedule.

F this system so much.
This is my journal lately.

I’m not trying to bring everyone down with sunshine’s constantly spiraling story but I’m honestly floored and have to release this. I really had hoped Mayo would try to help me. My friend even helped get me approved for a medical helicopter flight. But, none of these parts talk to one another and at the end of the day a short 14 line referral form that simply says dysautonomia, isn’t cutting it to get me in the hospital portion of Mayo Clinic. I really thought they could help me with some medical things I need assistance with.

Anyways.
Not much more to say right now.
No one can say I never tried because my god, did I try. Always.

Body and brain are slipping too much lately. To deafening levels.
So, I have to cocoon.
I have to pray this
massive storm in my body calm’s because it is currently raging out of control.

Not able to eat much but getting tiny amounts each day. Doing what I can with fluids. Very crazy stuff happening in GI. I’m assuming autonomic related from covid but really don’t know. This isn’t my typical GI stuff. Could also be that I’m actually fighting an infection in larynx. Sure feels like it with constant small fevers and a swamp chills flu feeling constantly. I literally can’t understand. I feel so invisible to the system. These aren’t my normal chronic illness symptoms. I understand you have to float and tough it out but I’m 6 weeks in with low fevers. Please god, someone actually care and try to figure out what is happening in my body.

To top it off, a friend today (well meaning but more theory based book intelligence than reality based experience of survival situations) told me, “maybe it’s your time to go, I will miss you”. It hurt me so deeply because how can you tell someone that who has fought as hard as I have for 7 years to stay here with my kids? It wasn’t empathetic in the least. And I understand we are more than this world but I do habitat in a human body and I kinda like it here. I kinda have to follow the rules of biology to stay in it. It just….hurt. And although I know she thought she was being deep and prepping me, she made me feel like so many do…. Like I’m expendable and definitely inferior and unimportant! To the point of insanity honestly.

Sigh. Huge vent.

Sorry.

Again.

Also shared a post trying to get friends and family to help me run a fundraiser or something anything. A car wash. As me and my husband cannot afford these medical bills. And. Yeah. Crickets. I cannot fathom my invisibility to others. When I was the first one to step up and help so many of them for years. Or their children. My parents told me good luck and yo try a payment plan with hospital 😅😜🤣🤣🤣🫠🫠🫠🫠 sure!! At $5000 a month JUST for home health care and excluding iv therapy. Sure!!

I'm so sad to hear this, and you are still in my prayers. I don't want you to lose hope. I had to go the private ME/CFS doctor route to get properly diagnosed and start a treatment plan. I am not allowed to fly due to coagulation dysfunction (possible blood clots at high elevation) and do visits over the phone to my doc in another state. My diagnoses allowed me to go after SSDI, though I'm still waiting to hear the verdict.

After you have recovered a bit from trying to make the system work for you, you may find some energy to consider other options. You have given it your all!

Have you tried creating a post asking about how people fundraise for their illness, charities that help, etc.?

Faith2007 said:

I'm so sad to hear this, and you are still in my prayers. I don't want you to lose hope. I had to go the private ME/CFS doctor route to get properly diagnosed and start a treatment plan. I am not allowed to fly due to coagulation dysfunction (possible blood clots at high elevation) and do visits over the phone to my doc in another state. My diagnoses allowed me to go after SSDI, though I'm still waiting to hear the verdict.

After you have recovered a bit from trying to make the system work for you, you may find some energy to consider other options. You have given it your all!

Have you tried creating a post asking about how people fundraise for their illness, charities that help, etc.?

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I think you have some very good ideas in this post and you are right, I’m beyond thoroughly worn mentally and physically lately. I’m signing off project get help and figure out what I have for awhile. Cocoon. Thank you so much for your kind words. And the hope you help remind me of. I have felt rather hopeless past few days. Many blessings 🙏💛☀️

Also, you bring up a very interesting point about coagulation and clotting stuff. I have been told I have issues with both by drs but again no diagnosis of what specifically like so much with me. Obviously needs further investigation. God may be detouring me for a reason I can’t yet see. And I hope you get your ssdi. Good for you! I’m sure you fought hard for that.

sunshine44 said:

To top it off, a friend today (well meaning but more theory based book intelligence than reality based experience of survival situations) told me, “maybe it’s your time to go, I will miss you”. It hurt me so deeply because how can you tell someone that who has fought as hard as I have for 7 years to stay here with my kids? It wasn’t empathetic in the least. And I understand we are more than this world but I do habitat in a human body and I kinda like it here. I kinda have to follow the rules of biology to stay in it. It just….hurt. And although I know she thought she was being deep and prepping me, she made me feel like so many do…. Like I’m expendable and definitely inferior and unimportant! To the point of insanity honestly.

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I'm sorry but in my opinion that was a cop-out on her part.

It would have been better and more honest for her to just admit that she's feeling overwhelmed with what she's watching you go through rather than say something that's really rather cruel. I don't think it's another person's call to even suggest something like that.

Judee said:

I'm sorry but in my opinion that was a cop-out on her part.

It would have been better and more honest for her to just admit that she's feeling overwhelmed with what she's watching you go through rather than say something that's really rather cruel. I don't think it's another person's call to even suggest something like that.

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Thank you.
I’m going to be honest,
It GREATLY affected me psychologically.
And, I’m definitely being careful with boundaries around her.

I think you are quite right Judee.
Do you ever think about how amazing it is the reactions others have to our illness when you are strong enough to just be in observer mode? It’s unlike any other illness reaction I’ve ever seen.