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Let it go

Hi everyone,
Starting a new blog entry on it because … well I just am. I feel like posting a song. I’ve mostly not been able to listen to music past month. But, a song will do right now.

Things have continued to be rocky with me. My family left town for 5? Days and I was on my own. After all of the progress I’ve made past few years, this was rather challenging given my state of health currently. But I wasn’t going to ask him to cancel his vacation with his family bc it’s always something with me.

I began having increasing issues again we needn’t relive late last week. My new GP said i unfortunately needed to be back at er. But, I tried hard to tough it out another two days… until I was severely unwell. My husband snd a friend arrived on Saturday to me quite listless and unwell. 100 degree fever. 4 weeks in!!!!! So, they called an ambulance. Yet. Again. Because apparently this is what we do now. Since so few other options exist for me.

In good news, the pneumonia is practically gone. Lungs look pretty good he said. I do have something called a hemidiaphragm. Sounds like elevated and weak after weeks of vomiting and coughing. I also have pleurisy now. Plus long covid (although I’m not attaching to that label just yet), severe dysautonomia and severe dehydration. Again.
My lactic acid was almost up to 3. Er dr didn’t like that. But 3 hours of fluids brought it back down to 2 so he believes it’s related to unknown form(s) of dysautonomia. It’s not pots. My ptt? And some other clotting f tot were a bit elevated. Could be dysautonomia related. Wbc and that whole gang of misfits still elevated.

Saturday was a very difficult and bad day. I lost much functioning that day. Or maybe before. Everything is a blur. Emt had to do a med tarp as I couldn’t even sit up. Tachycardia was out of control for days. Fluids assisted. Again. To the rescue. Why they are so hard to get, I don’t know for someone like me.

Dr said I’m to lay low for 7-10 days 😞 I’m mostly not able to get up but it’s not completely working out that way. Pooping in bed is terrible work when you are on your own. So… trying hard to use. I’m mode or toilet for these situations. Sigh.

It’s been triggering. After gaining so much. Like sand, I lost it all so quickly again. I’m trying to keep my head up. Many ugly things rearing their heads. Lungs have a ways to go. I’m so grateful pneumonia gone but not exactly having fun with what remains. Weird glue like stuff wrapped around my voice box and parts of lungs and coughing and weird stuff every single exhale. Serious shortness of breath too upon the smallest exertion. Plus just so many irritated cotton feelings in lungs every single minute. Hate it. I’m grateful for my o2 though. But this still is unsettling and NOT fun.

Er de said he advises a large hospital as soon as possible as I have rare things going on his hospital doesn’t test for.

GP being amazing. Messaged today asking me when I can get up to Mayo Clinic. She also ordered home health care and home iv fluids!!!!!! Now…. If I can get insurance to cooperate. And get my husband to get me our new insurance cards than began yesterday 😜

Anyways, I hope you guys are ok.
I’ve been in a really scary place.
Thanks to everyone out there sending me messages, texts, love, good energy, prayers etc. it’s been very beneficial to me. It’s sometimes really scary doing things like this mostly alone at home.

Sending y’all ❤️♥️💗

Intense eclipse passageway we are in.
Be gentle with yourselves.
Says the girl that just needed 7 bags of fluids past 3 weeks 😅 but you catch my gist! 😜

And a song

Let it go
Let it go
Let it go


Comments

Diaphragm can get weakened as a result of any lung infection/pneumonia and it does happen in covid. One of those things that responds to breathing exercises (when the patient is well enough to do them). Home IV fluids sounds like a sensible option. Lets hope it happens.
 
Diaphragm can get weakened as a result of any lung infection/pneumonia and it does happen in covid. One of those things that responds to breathing exercises (when the patient is well enough to do them). Home IV fluids sounds like a sensible option. Lets hope it happens.


That’s interesting Andy. Because the dr put me on spirometer excercises hourly. Whilst awake and my lungs were SO mad next day. So I’ve stopped for now.

I’m thinking I should wait till a bit stronger lungs are.
 
Ah that might be to help your diaphragm function better.

Yeah, not sure. This was before they found that. The spirometer made me produce excessive amounts of mucous again, made me feel feverish and like my chest was bruised and ice pick pain. Possibly causing issues with my dysregulation of fluids. My nurse friend said spirometers can increase your mucous and make your lungs feel bruised if you do too much and I probably did too much even though I wasn’t even near what a normal person would do every hour. I had no idea 😅 thought it was pretty harmless.

Will resume in smaller amounts eventually but trying to just stabilize for more than 2 days at a time rn.
 
Did they give you some oxygen? Also did they prescribe it for home use? If not, maybe your new GP would be willing to write a Rx. ??? (Hopeful.)

Edit: I'm glad you started a new post. :)


No, bc surprisingly, during daytime hours my o2 has been WAY higher than normal with covid 😳 it’s quite strange. My dr is aware snd last er dr said the up and down vitals are so common in dysautonomia. As of right now they say they are focusing on heart test and iv fluid treatment. I don’t think she’s ruled out supplemental o2 yet though for future.
 
I was able to take advantage of health care in this foreign place, where you can go to the pharmacy and buy all the stuff you cannot get in the US.

So I was really sick, and had IV's and oxygen and shots and pills and my husband's nurse was nice to me for a whole day.

Everybody mad at me for refusing the IV after the about six hours I was hooked up.

also mad as the oxygen tube is bothering me the whole time. So I hate it also.

I'm finally a bit better after a month.

But I'm really glad to hear your getting more help, and got that pneumonia improved...so please hang in there sweetheart, @Sunshine.
 
I was able to take advantage of health care in this foreign place, where you can go to the pharmacy and buy all the stuff you cannot get in the US.

So I was really sick, and had IV's and oxygen and shots and pills and my husband's nurse was nice to me for a whole day.

Everybody mad at me for refusing the IV after the about six hours I was hooked up.

also mad as the oxygen tube is bothering me the whole time. So I hate it also.

I'm finally a bit better after a month.

But I'm really glad to hear your getting more help, and got that pneumonia improved...so please hang in there sweetheart, @Sunshine.

Thank you dear rufous!
I’m so sorry for your immense struggles lately too 😞 please take good care of yourself. What a mess this illness season has been. 🙏
 
LOVIN the mayo clinic news, home care and iv fluids... Way to go sister!! My sponser shared with me around something 'in her experience things often have come in the 11th hr. Praise to the GP and all who lay ahead to be a lifeline xx 💜
Faith over fear but my oh my when the fear kicks in it's like facing 5 tigers and a whole tribe of dangerous things
 
"She also ordered home health care and home iv fluids!!!!!!"

That is AMAZING.

We were able to secure home healthcare for my mom after a hospitalization for a life-threatening emergency.

It was so reassuring to have someone come in and take her vitals and assess her every few days.

Because of the nurses' care and concern we were able to get at home 02, referrals to specialists, in-home blood draws, and in-home PT.

We never even knew these resources existed, and it made things so much easier for my sister, who served as my mom's primary care giver.

I hope this works out and helps you heal from this latest set back!
 

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