Pray

https://photos.app.goo.gl/ZJNc6hwyMFyTdNuY9
Another day on planet earth sunshine... We're doing it and you my dear are doing incredibly well xx 💜

Sunshine,

I know we’ve been texting for a couple weeks on this now, but I got around to listening to your thread here. Sounds like you’ve a good crew communicating.

I did get your text earlier today as well, just been real low again on the eve of another big storm that is supposed to drop yet another 18 inches of snow tonight and tomorrow. We still have 14 inches on the ground from the past 2.

You’ve read both of my books, so you know I don’t pray, and you know my general consensus on most people. I’ve been through and seen too much for it to be otherwise. But when I find good people (and that ain’t many), you couldn’t tear me away.

My mouth is closed concerning the people you’ve been dealing with for years now. If I started down that path there would be napalm.

Excellent to hear the pneumonia is lessening. O2 being up isn’t a bad thing, even though (as we’ve texted about) it is always an oddity. Heart issues – could simply be because your system has been fighting so hard in an already depleted state. When I had H1N1 a year ago and landed in the ER, the germs were already dead and beaten, but my system was so wasted, and having severe dysautonomia, I just could crawl back out of the hole myself. All the wretched body and head wracking symptoms were no longer from the influenza at that point.

But a solid doc visit on Monday could do wonders if you’re able to make it! As you said, ER docs typically look for all the basics, speed through because of either limited space, and or the understanding of cost for the patient for every second they remain in ER.

Ugh, that is all I have right now. Need to rest. I’ll send more energy your way in a bit and text more snow photos during tomorrows big storm!

sunshine44 said:

I’m having some heart issues as well but it’s not acute but it is potentially serious.

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All heart problems can respond to treatment. It might turn out that any treatment you have will improve your me/cfs symptoms.

sunshine44 said:

The dr said my chest X-ray actually looked much improved yesterday.

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Well that is very good news but covid pnemonia can fluctuate so dont worry to much if the next scan looks worse. It happens.

sunshine44 said:

heart issue is chronic not acute.

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When you see the heart doc ask them how long you might have had the heart problems.

sunshine44 said:

My q, T and S waves are shears abnormal and i have signs of anterior infarction. Not very cool.

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No not very cool but a blessing that it has been detected. It might be hard to imagine at the moment but once the pnemonia ect has been treated you could end up in much better health than you have been for years.

Aww, you guys all made me get tears in my eyes tonight. Because I feel your hearts. I may not see you. Or talk to you but your support has been so important to me at times on my journey. You guys know how isolating this illness is and how you often feel like an alien when with medical professionals or even family. And well meaning friends.
So many helpful ideas. So much validation. So much understanding and compassion when my world is often not filled with that.

Thanks for the love everyone.
I love y’all. 💗💗💗
Somehow, we keep onward through this hellish existence and uniting as a unit, has certainly never been a bad thing. We all help each other when we can.

Ps. Last night a nurse I had last week came to visit me in another part of er and I really loved her. She comforted me so much. It made my heart so happy to see her again. It’s funny how people can help you reignite your spark when you feel it dimming. Bless you beautiful humans ✨

Agree and it can come from someone not expected and as a surprise..
💖 Is always there and glad u got some sister xx

sunshine44 said:

My friend and her family are going to be angels (I feel terrible about this) and attempt to transport me Monday to a dr the er dr called and got me into for my heart.

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Good luck with the appointment.

You know, one of the times I was in the hospital feeling my worst, a couple of angels really, really helped. One was male and a nurse and he gave me the biggest hug in the world. No, it had nothing to do with sex, but something (anesthetic) had driven me a little crazy and I was screaming and yelling because of it. No excuses, it was my problem, but it arose b/c of the anesthetic.

Later, the young receptionist came in and did the same thing. It calmed me down immensely and I wonder why human touch is so important to all of us? Is there anything like it? I know some people don't like being touched (I have a granddaughter like that), and find it hard to understand, but I do respect her boundaries.

If you don't like touch, you absolutely don't want me around. I love hugging people, whispering in their ear and making them feel important. Often they'll hold on to me for dear life....just like I did to the nurse and receptionist.

I still think of them and how much it meant to me. How ashamed I felt at my behavior and how the other patients put up with it. No, I find people to be kind and generous and yes, there are a few grumps in the group, but on the whole, they're fine. Touch....how simple! Yours, Lenora

@sunshine44, if you're at all up to it please let us know how your appt went today...only if you're able to.

💗

Will update when I can.

Hey everyone, things have been very volatile at times here. One second I’m healing, the next I’m in yet another crisi like yesterday with new dr telling me to go back to ER. Plus I’m quite weak etc. and haven’t been able to update as so wished.

I will give an update.

The new NP er dr sent me to is an Angel in true form. She’s incredible and I’m so grateful. Saw her Monday. Family and friends transported me via medical tarp. She didn’t want to do my 4th chest X-ray in one week but was encouraged by previous healing in the 3rd one. I guess one of my lower right lobes was partially collapsed 😳 no one told me that. If my lactic acid went up again, she said I had to go from her office to hospital. Thankfully it went down. Although wbc rbc hemoglobin and platlets all still elevated. She’s very encouraged by my lactic acid coming down.

She said my lungs don’t sound fantastic but they aren’t terrible either. She kinda wants to try sn inhaled steroid but held off for now with my undiagnosed adrenal issues plus 130 baseline tachycardia lately. She gave me a spirometer to use to strengthen lungs. Unfortunately there’s a chance that using it worsened me yesterday and why I had worsening issues. So unreal. So dumb.

She isn’t sure about my heart. She’s wondering if it is blood flow or blood volume related but more testing needs to be done. She ordered a 14 day holter monitor up my house so my family doesn’t have to re transport me right away.

She called me twice personally after our visit. She’s so attentive and caring and knowledgeable. It’s an adjustment after the amount of medical abandonment I’ve been through. She never once told me I was faking losing the ability to walk or forced me to sit up etc. she believed me. It was effortless. When she found out I’ve never had a spinal mri, she rolled her eyes and said you’ve been through a lot. You are a fighter 😭 she heard me. And even if I don’t survive this terrible Covid pneumonia ordeal, just finding my last er dr and this NP, has brought such comfort to my life. Like, they get it. Complicated things are happening. She said, not everything on paper or in medical books is how it presents in real life. She understands I’m not a statistic. She understands I got Lyme and fell through many holes that are not yet in medical textbooks. She wanted to give me iv fluids in her office but said she doesn’t have access to that. Wild huh? It would have to be a whole er trip if she didn’t hospitalize me. I could sense her frustrations with the limited system she works within. Absolutely not set up for someone with severe dysautonomia.

Anyways, it’s been an emotional experience to find someone like her after what I’ve been through. I think I was put into a category by many drs of she has a history of anxiety attacks etc. and everything that happens to her isn’t real. It’s in her head). But that unfortunately delayed me getting treatment for a VERY real physical issue. I’m cautious. I’ve been stuffed away in a room for enough years. I’ve been made fun of for losing the ability to walk and had psych evals ordered on me instead of spinal MRIs!!!! Despite being on my best behavior snd so well mannered and calm and grounded. It’s truly been surreal.

In better news, I get new health insurance next week. Real health insurance. Not health insurance that no home healthcare Dr or agency will take etc. first time in 6 years. A friend of mine is on a plight to get me to Mayo Clinic asap. And the ER dr and NP feel that’s the next logical step here. I need a large hospital with much testing. There are many issues currently going on in my body. I’ve only spoken of a few. So, this will be interesting but I’m choosing to have faith. And if all the stars align snd it happens, it could bring many answers to my situation that literally no drs in my area have been able to figure out and possible assistance.

Maybe there’s nothing wrong! 😜

Anyways, I’m resting lots.
This has been so much on my body as you can imagine. Trying everything I can to continue to get this pneumonia out of my chest. The antibiotic did nothing unfortunately. Still glad I tried it. I did reach out to homeopath yesterday before er and she reassessed my situation and put me on 3 things 3 times a day. Since 2 hours after initial dose, I’ve had improving stats, less chills low fever, improving chest situation with the ability to take deeper breaths and way less mucous. Please pray this continues for me. I literally was heartbroken with thoughts of having to return to hospital yesterday. I am very, very worn and will only go if no other options or if it’s a very dangerous situation.


Thank you everyone for your support.
It’s been instrumental to me on this very turbulent journey.

Andy, thank you for that info on Covid pneumonia. One day I will feel better and 2 days later like it’s growing again, press repeat. Helps to know.

💛☀️✨

Thanks for the update Sunshine. SO SO happy to hear about the compassionate NP. It's been a long time coming.

Continuing to hold you in thought and prayer.

sunshine44 said:

She kinda wants to try sn inhaled steroid but held off for now

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It's pretty much standard treatment depending on how bad the inflammation is. Helps to stop any lung damage.

sunshine44 said:

And even if I don’t survive this terrible Covid pneumonia ordeal, just finding my last er dr and this NP, has brought such comfort to my life.

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Survival rate is high and when looking at statistics about covid/covid pnemonia keep in mind the fact that those who dont make it are most probably elderly and/or have the type of prexisting health problems that you dont have

sunshine44 said:

Trying everything I can to continue to get this pneumonia out of my chest. The antibiotic did nothing unfortunately

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Ah this suggests that you dont have bacterial pneumonia.

sunshine44 said:

I’ve had improving stats, less chills low fever, improving chest situation with the ability to take deeper breaths and way less mucous.

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Good signs, particularly easier breathing and less mucus. Can indicate that the inflammation is reducing.

andyguitar said:

It's pretty much standard treatment depending on how bad the inflammation is. Helps to stop any lung damage.

Survival rate is high and when looking at statistics about covid/covid pnemonia keep in mind the fact that those who dont make it are most probably elderly and/or have the type of prexisting health problems that you dont have

Ah this suggests that you dont have bacterial pneumonia.

Good signs, particularly easier breathing and less mucus. Can indicate that the inflammation is reducing.

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Thanks Andy. All helpful information.
Yeah, she’s concerned it could send my endocrine issues into more of a crisis. I’m not really against trying it but she said we are gonna wait a few days to reassess.

Yeah, they think this is all viral now 😳

Thanks for making me feel better about the statistics of overcoming week 4 of this (week 3 of pneumonia).

I’m very grateful for the decrease in both past 24 hours! I pray it continues.

Tammy said:

Thanks for the update Sunshine. SO SO happy to hear about the compassionate NP. It's been a long time coming.

Continuing to hold you in thought and prayer.

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Thank you Tammy 💗🙏💗

Tammy said:

Thanks for the update Sunshine. SO SO happy to hear about the compassionate NP. It's been a long time coming.

Continuing to hold you in thought and prayer.

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Exactly what I came to say. So glad you received compassionate and competent care. So thankful!

Who knows, maybe we'll run into each other if you go to the Rochester MN Mayo. My new neurologist is wanting to send me there, but is holding off for now. I was there 27 years ago and they literally saved my life (congenital heart condition). They nailed something everyone else missed. I am a little worried though, as I remember the visit. It lasted the entire day and the first half was one lab test or exam after another. Then it was 2-3 hours with the docs. I'm not sure I could get through that right now. I began to crash hard near the end of this last Neuro doc visit, and that was less than an hour at the end of a day I largely rested for. I think it would be great if you can get in; make sure your docs find out all that will happen so you are prepared.

I'm so glad someone 'got' you and your case. I will continue to pray that you find all the angels and angel abodes that will clear you path to healing. Please keep us updated as you are able.

Good news @sunshine44. Doesn't having a kind doctor make all the difference in the world.

I encountered great kindness from mine today, also. My third visit, a cardiologist and quite young. Upfront he told me that I have to have another stent (my 8th) and another test to confirm exactly where the surgeon should place it.

He then said he would hold off on my next appointment with him, because he could tell that I'd already had so many...and he's right, between the tests and visits with him. He then proceeded to tell us how happy he was with his baby boy, 8 mos. old and the joy he gave to him. He lamented that late office hrs. keep him away from him more than he would like. It was nice because we shared in his joy...next time, a picture, I'm sure.

So give those so-so doctors a chance. It usually takes 3 visits before you click with someone. I'm sure you'll click with the doctors at the Mayo right away. I hope they can make a helpful diagnosis. And for pete's sake...do get well now! Glad that things are more hopeful. Yours, Lenora xo

Next time you get to talk to one of your medical advisors @sunshine44 ask them if Nitric Oxide inhalation has been approved in the USA to treat covid pneumonia. Bit about it here. Looks interesting.

Attentive caring and knowledgeable Praise every positive bit of energy that got u to her!!! My goodness the deficit needs some wonderful professionals to make up for the shambolic..
Happy dance.. Wiggle wiggle oops stay still
💖💖💖🌻🙏

Damn @sunshine44! Your anxiously awaited update reads just like the rollercoaster you are on. The way you handle the ups and downs is remarkable.

It is frustrating that the healthcare professionals you've seen were not/are not able to narrow in on the pathogen and offer targeted treatment to support your body. I am praying that you will have complete and total recovery from this lung infection.

Congratulations on the new and improved health insurance and I am *thrilled* about this new Nurse Practitioner.

I've seen a few exceptional NPs (and PAs) over the years and they have been the most thorough and most compassionate healthcare providers I've ever seen.

Following along and wishing you well! 💕