Yet again i come asking for prayer for me

[DatonK]

Hi Guys & Gals,  To say it not fair this illness is mild i yet again was  into to hospital late last night. My FM locks my body up but up to now never my throat or airway. Last night at about 4am i couldn't breath even with my cpap on  My airway was locked i was able to rub it with the help of mandy and CPAP pushing the air in opened it up but it F* my reading up SPo2 was down to 78  BP was good at 134/57 P116 to 120.

I was sweating like a river it looked as if i had just stepped out of the shower and not dried off. Head was spinning and i was floating as if i was moving in and out of my body  mandy rang for help they came didn't like the look of it all so off we went to hospital  on way i started to get a headache from hell the lights were to bright and then i started feeling sick every little movement i wanted to be sick so IV line in and anti sickness drug given plus iv paracetamol.

By the time we got to hospital i was starting to feel ok but spo2 was still low even on O2 so kept on 02 and then like all my flare ups i got the mother F* er of all pain shot from my head right down my right side just like it always does all pain went sickness pulse came down to 78 but spo2 was still only 91 so moved to special ob care where a doctor came in and said. Has no one read about your spo2 read being out from prob finger clip i said i have been telling them that i have two letters.

No one will listen to me. with that 02 was off asked how i was and if i was still feeling ok just drained i could go to the ACU assessment care unit  at 11am to be cared for and checked on by a team there if they think the same as him I should be out by 1pm. 

At 11am came and i was moved checked on ever 15mins by a nurse and then at 1pm the first doc checked me she was very good made sure all bit we're still working legs arms mouth neck movement eyes following finger normal stuff she was happy but her boss would need to sign me free as it had stopped me from breathing and the light headedness just to make sure i was as fit as i could be  Back to 15min checks asked to follow the pen each time put my finger to my nose then the pen the pen would move past it each time. Then at 3pm the boss Doc came in he did all the test and felt my neck and head looked in my eye real well.

Then said I have read you have the rare FM lock up. I think what has happened is that in the lock up it locked you inner ear giving you short term Vertigo. This is very very rare with FM but I have seen it before and I am sorry we can't stop it but we can overtime find the right drug to help you come out of the dizziness and sickness. I am so sorry it has taken till now for you to be seen by me if someone had read the letters at start you would of be in this care by 9am at late's and would of been home resting now.

I am going to write a full report to your GP and ask him to give advice to stop you having to come in and types of drugs he could give to you till he finds a pair that work for you.  What I will say is till you get that care sheet in place lay down rest and only get help if you start being sick or can't keep still or your breathing is bad and your drugs are not helping. I also will do my best to get you health passport done which will give you all the out of hour care lines to fast track you in to here if needed. You are the best to know your health and from reading about your FM it is being cared for well as is all your other needs. Keep doing what your doing and i hope not to see you again but i know what out of hours are like. I am sure they think we have about 50 doctor on and a 100 nurses just incase they want to send people in like you that tell them its a flare up. Be well take care.

With that I was aloud out. I been resting and sleeping still feel drained but happy i am still this side of life at part i was sure i was going to see the other side. I have to say even in the worse of it i was at peace and felt the love of God holding me. I am sure at time he was pushing me back into my body say no not your time young man.

So  My Father God Thank you for holding me last night, Thank you for placing peace around me and in me, Thank you that i know you will be there to hold me.
Father God if i ever forget how much you care for me just place you arms around me and hold me close to you till i feel your peace once again.  Father God thank you for all that cared for me the  the and the doctor and all that had a role in my care Lord God bless them in there roles my they know how much I thank them for the care.

Father God thank you for all that have been praying for me.

I ask this in the Name of you Son Jesus Christ how took on the pain of the world and bleed and died for Me Thank you Jesus Thank you Lord Amen

[Barberian]

  done.

Wish I could say more, but brain is on strike.

[looneylane]

 

[foxgrove]

Definitely praying!!  So glad that the situation turned into the ideal way to get you the real help you needed.  Bloody scary though!!  Take care and I'll be praying that Mandy gets some sleep this year as well. 

[DatonK]

Been in a full body lock not my throat thank God that was not nice not being able to move is bad but fighting to breath and make your airway open up and work is scary. I don't want to go down that path anytime soon or even better never again.  Had a call from CPAP Nurse she is sending me a part that can see if outflow is the same as in flow if not it ups the in flow in a pulsing mode the make the airway open and stay open if after three pulse modes it still has less air out it alarms to wake me up that way i should know if my throat is locking up or not.  It all is very scary. But i have come to the point that if it will be that i lock up and stop breathing and die i know i have had a good time on earth but will have an even better live in heaven. 

Don't get me wrong i don't want to die just yet but if it is to be then i know i will be happy where i am going.

Anyway I ain't gonna let a bit of a locked throat stop me hanging out with you guys a great bunch of mates anyone could ask for. I know that I could never travel to see any of you due to my health being the way it is and look forward to seeing you all in the spirit world one day way way in the future.  Tell then i am happy to chat on here.

Today is UK's Mothering sunday  So to all the mums out there happy Mothering sunday to you.  Not been out as yet today pain level is high but out in an hour for tea at my folks Mums not been to well so we don't go every sunday now only once or twice a month.     

[foxgrove]

Glad to hear that medical technology has a solution for that!!  Pretty scary all that breath stopping stuff.  Be well brother.  You know you're in my prayers.

[DatonK]

Yet again I come asking for prayer.  It look as if hell is doing its best to floor me I have an infection from Hell Three weeks of pills to date and Now on to the four Week This new one showed up as to kill it. It took the time to show up in my pee and (spit muck ). Only had these once before and they made me feel like S*.  Start here sweating, drinking by the bucket full. Peeing for england smells bad egg.

Thing is the new pill can change the colour of pee to dark brown. Problem for me as this is my warning of my bladder holding out on me not voiding fully each time I go so Tube needed.

Infection is in the throat and lungs but waste has moved it to the kidneys and bladder.  So all and all it in every part of my body.  They think it is from the cyst on my wee ball.  So it looks as if The tubing will be taken away and bye bye little fish the Ball should be OK to stay but Mr K (The Man) will not know till he see's what it looks like on the table.  My bleeds from sac are to be lased hoping it soon but got to see the specialist yet.  Had a bleed that took hour to stop still got them dressed as two more could pop at anytime. 

So guys Hold me up as much as you can in prayer Don't know if I'll be up to updating day as this is draining me fast. 

Keep as well as you all can and God Bless you all.     

[countryboy]

Hey DatonK,

As always, when a brother gets down and out our prayers seem to kick into high gear.  We try to help each other as much as we can, but sometimes our shoulders just can't hold every thing up very well.

You will be in our prayers and we hope that you can keep us informed as to your healing.   

[ronr]

You need the super pill to fix this super bug that has been bothering you for so long and in many different ways.

We are behind you, hoping and praying all the way.

[foxgrove]

You got it brother.  Sure hope that things settle down healed this time instead of going dormant and popping up again ugly.  Prayers continuing.

[DatonK]

Well Saturday I started to feel a lot better No pain when peeing and good flow chest not too tight throat not as sore.  Sunday I felt as if hell was putting more logs on the fire inside me. But when I took my temp it was normal yet mandy said I was hot to touch. Then pain in the male area the cyst was playing up or was it fighting back the pills. Chest was tight and coughing up mucky  blobs. Then I need to pee but it was locked up so tube out and in it went to drain me off. Had something died in me water worker the smell was so bad I was nearly sick.  Mandy said it moving the muck out. I said yes I know I feel it. From then on it just drained me it was sleep drink eat some toast sleep more pee sleep sleep drink sleep pee. feeling sick so I am hoping it is on its way out so draining.  Not been fun being in bed for what feels like weeks now.  Plus to top it of another vein popped tonight but this one stopped fast will I ever have a sac that is free of dressings.  I long for the laser to start on them told it can hurt but I don't care if it does I want them gone.

[foxgrove]

Continuing to pray.  I hope that this was kind of a turning point where the fever broke and the healing could start.  It's kind of how it sounds but you never know with infections.  Crazy little things, and tricky too.  Be well brother.

[DatonK]

Sorry guys for not updating sooner but had a trip to second home hospital  had chest pain and shooting pain down left arm.  After test it was ruled out that it wasn't a heart attack but at time I am tachycardia at times I have to take things slowly. Thats a joke I said to the doctor I have been fighting an infection and resting in bed with it he then came back with rest more then.  .  Plus he put me on my little red pills for 2 weeks great I can say hello to the weight joining me and staying I so hate Steroids.  My own GP has been chatting with the others that care for me and it could be that I have to take a low dose of steroids daily or weekly I don't want this.

On the bleeding front the zapping of them may not be till late december but my pee doctor and my GP think it should be sooner so let hope they can push for it.

My pee testing one of them I have to stop nearly all my drugs 7 days before so I have told them I will not do that as I wouldn't be able to move without them let alone stand for the test to be done. I am awaiting outcome of what I have said hoping they can find another way forward in doing the test. but I am not going to put my body through the hell for it. Just to fight to keep my tubes. They will have to come up with some good reasons why it is not right for me to tube at my age.

   

[looneylane]

Thanks for the update! I hope you get your needs met quicker!

[DatonK]

Appointment has come to see the man about my bleeds on my bits 27 May so if you could all pray for that day  also  got a special pee test on the 19th may it takes about 1hr to do and can give you a lot of pain in the water works so thats going to be fun and for 6hrs before you not to take painkillers.  On a good note infection is gone or very small if I still have it.  My Acupuncture is doing great had it on thursday and still only got very low pain.