Ok people I really need support, prayers and good wishes

I dont Nammu ..... but if he does have the energy for the tango I'm gonna be all over YouTube

Great pic Beth .. Thank you

Thank you guys for all this support... It is truly helping me

Ah waking uo sweaty! That happened to me when I had the chicken pox at 17: I woke up in a cold sweat after I fainted. My mom and sister had picked me up and put me on the bed.

Thinking of both of you and sending good vibes

much love

Update # 453 in this Saga

Ok so he was started on Levaquin ( Antibiotic) and Prednisone same day.. Pred in the past makes him all full of energy.. So I "think" he might be a bit better but I dont want to jinx myself and this just being Steroids ... Vitals stable, No fever, He is holding a 90 oxygen level a bit easier yesterday.. He sleeps 16-18 hours a day... His body is fighting a war.

I just need this medication to kill the Monster because the next step is him going in the hospital and I wont be able to be with him.

Thanks everyone for hanging in here with me .... I cant wait to update by saying " HES FINALLY BETTER" or at least a big improvement .

I’m sending prayers that this new medicine does the trick. You’re doing an incredible job with this. Many hugs and healing vibes.

Still praying!!!!

Okay I am literally so frustrated and scared that I want to go jump off a bridge ! Had many screaming fits in the car while going for meds or groceries.. I am fighting daily to not cut, Its been over 8 years..

Steve has one more day of the antibiotic Levaquin tomorrow ..

He went to bed about 11:30 last night and he is still in bed, Hes gotten up to go to the bathroom but right back to bed.. He has been sleeping 16-18 hours a day. He doesn't seem worse and his body is fighting a war so the sleep is needed.

He's physically worn way way down,, going on 7 weeks of being sick. So there is a chance this medication is working and we wont know that until he does another sputum culture.. We go back to Doctor on June 1st.

And here I am going to share another struggle that is going on.. While in Florida for Christmas he started having hellish migraines, SOunded like Migraines altho he had never had them before. Nothing was touching it. His Sister had a brain bleed.. Her Doctors told her to let her brothers know to be tested , apparently the area of the bleed can be genetic. his mom died of a Aneurism at his current age of 59. So he had a Mri with and with out contrast and a angiogram.. There was not sign of any vessels. So reffered to a Neurologist to tackle the headaches..

So Neurologist comes in the room and we had seen him before for my husband neuropathy in his legs and feet.. He said Okay we will get the headaches in a few but your Mri results are showing you have a 20% brain volume loss. my heart dropped.. He gave him the quick neuro check , remember these 3 words and then asked the date , what day it was, who was the president, what year was he born and then back to the 3 words , he struggled with every single question , and could only recall one of the words. Red, Nashville. and sunrise. The Doctor asked me specific questions and I realized Steve was having alot more trouble than I thought

We and our Doctor had assumed for the last 4-5 years that his memory issues and missing words were side effects of his neuropathy meds.

But sitting in the office and thinking He hasnt been able to fill out any paper work for a long time.. He would simple stop writing and it was like DOB or our address, So I had been doing it, The meds have given him a tremor so it is harder for him to write..

One of the first signs of brain volume loss like his is either horrific headaches or seizures.. that's what usually gets people to the Doctor.

So he started him on Noratriptaline. He said he isnt going to just jump to determine which Dementia... There might be a time for medication, but its not something he rushes to put people on.. our follow up appts kept getting screwed up due to COVID. We did go for a follow up and since the medication has handled the headaches he wants to do a Mri and follow in 6 months or sooner if there is more decline.

So...... If my husband survives this god damn infection that has a high morbidity rate then we will be on the slippery slope of losing him to dementia.. He will slowly get worse, he will forget more and more , During all this he will be fighting off other lung infections and one day he wont remember Me, He will just forget and lose himself to this shyt show of a disease. He doesn't deserve this .. I have taken care of hundreds of Dementia patients its horrible, ugly and devastating for him and it will truly destroy me. I have told him I will never put him in a nursing home, I know half the people working in them dont care because I was always doing the work to make sure my patients were taken care of.

So if this Antibiotic doesnt work, It will be admit to the hospital for IV antibiotics.. Steve has a hard time answering questions like how is he feeling, He often cant explain how his breathing is, or how long he has been on X medication on and on and this GOD DAMN PLAGUE will not allow me to go into the hospital with him, I wont be there to make sure the Doctors understand his medical history and that the nurses will give him the right medications, accidents happen, So I am always there to watch everything and take care of him.. Back in August when he was in the hospital he was so out of it he didnt know his name, Doctors asked questions and he had no clue so i was there to fill in the blanks ..

So ....... I am trying to handle ALL of this and not lose it because I simply do not have the luxury of having a meltdown and needing IP, I cant have him drive me 110 miles north to my IP and then be home for however I'm gone. It is just impossible, No we do not have any family here. So I honestly don't know how I am going to manage this.. He is feeling horrible and keeps telling me I didnt sign up for this shyt. I say well you didnt sign up for a Bipolar wife so we will some how muddle along..

Of course with covid my T session are by phone, and it helps to just be able to talk to Richard and say the stuff out loud that nobody wants to say. Richard has no real advice, He said I am doing everything I can to manage him and myself.. I have leaned on my Xanax more. Psych meds? I dont know if they would help.... I cant be dealing with side effects and adjusting to new meds while he is this physically ill. I need to be ready at any given time to get him to a hospital if he were to go septic.

So yeah.....

HUGE ((HUGS))

I don't know what to say - we have a lot of dementia on my mom's side of the family and I know how devastating it can be. I'll be praying the sputum culture comes back negative

Thanks Polibeth

My Dear Friend, Christina, I am speechless at the moment. You're courageously reaching out for more support! I know doing so has been a tough decision for you. You and Steve have been going through so much!

Love and Prayers ~

I am here for you, anytime.

Oh Christina, so much on your plate. You are in my prayers.

Steve is so blessed to have you and I know how much you love him! You’re also so strong
to be going through all this!
I’m praying daily for you and Steve like I’ve told you. I can’t imagine how all this affecting you but I know it has to be a lot. I am here for you whenever you need to talk. I love you!

Oh, Christina, I'm so very sorry you are having so very much piled on your plate!!

It SO seems like they'd have some kind of exception for accompanying someone with cognitive and memory problems. How do they expect to get the answers they'll need from him? Is there some way you can "be there" electronically?

Please remember to do some special things, just for yourself.

*********
Mr. Robot

Makes me sick to the heart, Oh I feel so tired. And the way the rain comes down hard, that's how I feel inside.

--The Cure

Love and prayers

OH Christina, *breaks out the big ancient gnarled want* waves wand and sends many good wishes and. Healing rays Stevens way.

lean on us as much as you can. PM me, anything you need we'll help. seriously,

Sending hugs your way. I`m so sorry you have to deal with all of this. It all must be so overwhelming. Sending good thoughts your way Christina.

You have been my rock and I am ever so grateful ! I Love you You and I have Many mountains we have to find ways over or around, Your always there when I need you

Ahhhhhh Thank you

God knows blow up your Messenger at all the times of the day and night.. You are an amazing friend, I love you and thank you for all your support and the crazy memes we share.. We have each others back

Hey IZ, I talked to a nurse yesterday we worked together a long time. He husband is again in the hospital with cellulitis and infection , brittle diabetic and when sick he gets very confused, They let her stay the first day to make sure they understand whats going on , when everything started.. But just the one day. The hospital she goes to is the town East of me, ours is West , They are both owned by the same company. but its up to each hospital

If I cant they will have no choice to put in one of the rooms with a window so I can physically see him and watch what they are doing I will be on the phone with them constantly... Its a small hospital 28 beds. As far as we know, there are no covid patients in the hospital..

Thank you so much I am trying hard to take care of myself