Covid positive result

[paintedroom]

What a day,what a year.

Bear with while i try to contract this horrible little dittie into something more palatable.Feck it,ill give you the lightning tour - today while recovering from heavens elixir on a bed in a private hospital, my phone pvssst with the result of a covid test i had the previous day - positive with new strain !

I have spent the last 15 months with throat problems that wont let me eat solids and powerful migraines that last between 3 and 5 hours every morning without fail.They tell me its a gastrointestinal problem but todays gastroscopy found nothing.

Im taking pragabalin for the headaches but they simply arent strong enough so im adding ibuprofen,which is the only thing that really works but am told i cannot because the lady at the pharmacy would shoot me because it doesnt sit well in combination with the Taf in Genvoya - kidney problems !

I have been both public and private on many multiple occasions in the last 15 months and i can tell you the impression they both give is that you are on your own - no joined up thinking whatsoever.It is forever the case and impression when visiting a Doctor/consultant for the umpteenth time, that one appears to be utterly novel to them;Its back to the first page to reread your file,the file they didnt have a clue about the last time either,in order to tell you some banal fact you had garnered after a simple afternoon researching conditions you thought you might be suffering from.I could go on.

The end result and many thousands of euro later(no insurance) is that my case seems inconclusive.Todays episode with the consultant entailed a wide-eyed,near hysterical entreaty that something had to be done insofar as i had been suffering from these powerful migraines that left me with head in hands for between 3 and 5 hours everyday(after 6 months bordering on insanity)..and(diminuendo) nothing - continue taking the meds,that dont work and can cause fatal stomach bleeds for another 3 weeks until we have the results of your 13 biopsies....and the lovely little cherry on the top of this toxic 3 tier confection - a covid diagnosis !

Its back to gallons of ice cream and soup for another 3 weeks so and see if pure bloody minded defiance can save me.I'm looking after my elderly 88 year old mother full time now so she's undoubtedly caught the dam thing as its the new strain..did i mention that ? Dear Lord,just spare me having to witness my dear old mum suffucating slowly in her final moments.

My humble apologies for this horrid little screed.. i thought amongst all the spleen and bile there might be some salvagable solace for anyone suffering at the hands of indifferent institutions and their secret agents.I wont bother to ask about the delicate little cocktail of Hiv and covid.

Love to all.

[paintedroom]

I should add that i will be posting symptoms as the arrive/should they arrive, and their effect on me.

[Jim Allen]

Hiya

Sorry to hear you have been feeling unwell and now the covid. Ugh.

Prehaps increasing the dosage of pregabalin might help. Pregabalin for migraines is new to me but to state the obvious finding the trigger would be better of course. Have you let the HIV Consultant know you have these ongoing issues?

I have been both public and private on many multiple occasions in the last 15 months and i can tell you the impression they both give is that you are on your own - no joined up thinking whatsoever.It is forever the case and impression when visiting a Doctor/consultant for the umpteenth time, that one appears to be utterly novel to them;Its back to the first page to reread your file,the file they didnt have a clue about the last time either,in order to tell you some banal fact you had garnered after a simple afternoon researching conditions you thought you might be suffering from.I could go on.

The end result and many thousands of euro later(no insurance) is that my case seems inconclusive.Todays episode with the consultant entailed a wide-eyed,near hysterical entreaty that something had to be done insofar as i had been suffering from these powerful migraines that left me with head in hands for between 3 and 5 hours everyday(after 6 months bordering on insanity)..and(diminuendo) nothing - continue taking the meds,that dont work and can cause fatal stomach bleeds for another 3 weeks until we have the results of your 13 biopsies....and the lovely little cherry on the top of this toxic 3 tier confection - a covid diagnosis !

Look nothing I honestly have helpful to say other than I hear you. I know how bad things can get between public and private care.

A few years ago I started to have pains, saw the GP, then had my appendix removed, got that done but they found some other issues during the surgery.  So over the next 12 months, I had a few scopes, scans, a painful colonoscopy, and cancerous lumps removed in Private care, finally sick of being in pain I asked when is this crap going to resolve the pain?  The answer I got was it's not and, I should see my GP  Spent the next 5 years in pain ...

I'm looking after my elderly 88 year old mother full time now so she's undoubtedly caught the dam thing as its the new strain..did i mention that ? Dear Lord,just spare me having to witness my dear old mum suffucating slowly in her final moments.

That's an awful fear to have and I hope it does not come to that.

Feck it,ill give you the lightning tour - today while recovering from heavens elixir on a bed in a private hospital, my phone pvssst with the result of a covid test i had the previous day - positive with new strain !

Are you still in the Hospital?

Look the only thing I can say is to play the HIV card. I have never done it before and I've experienced some nasty shit in my life but in Nov 2020 I was scared for the first time and when being admitted to hospital (Mater Hospital) and they asked who is your doctor and I said Jack Lambert instead of my GP.

Despite not being an HIV issue, he had me moved to a different ward and one of the ID Doctor's visit me every 2 days and consulted by the departments on all aspects of my care and progress. I truly think I got far better treatment as they were all aware I was one of Lambert's patients. I've never name-dropped before and would not do again, but if you do get admitted again and are stuck when they ask who is your doctor mention you HIV consultant instead of your GP.
 
Anyhow, keep us posted and after the pandemic, we will go out for dinner and catch up sometime. 

Best, Jim

[paintedroom]

Just posting this here as its a reassuring note for us that are covid positive and anyone else out there worried about the obvious -

https://www.youtube.com/watch?v=Ff7Z6YfTu0M

[paintedroom]

Jesus,thanks for going to all that trouble Jim..a bit of spleen venting on my part but will improve my imput by detailing any covid symptoms as and if they happen.

It would take too long to take you through the byzantine kafkaesque corridors,dead ends and no go areas of the last 6 months.Suffice to say that ive been shunted back and forth between ENT's and gastros and now after they camera'd up and down,it is recommended that i go back to ENT yet again - The headaches are a mystery to them so i guess im going for a brain scan somewhere in the future..thats if i pass through the covid phase unmolested.I'm popping pills like Hunter Thompson so not sure what symptoms will be recognisable.Its a bit of a trip to say the least.

The Hiv card ? - They knew at the Beacon(had to go private as the next appointment Vincents could give me was may the 25th !!) but made little difference to the imperatives of monochrome machinating capital.The Prof there had a wonderful bedside manner which lasted all of a few phrases then on your side and in with the juice.I await the results of biopsies in 3 weeks.

I see im not alone..you've been through the mill yourself - 5 years of pain ? - Christ,i'd find it hard to maintain relationships on that ship..i only hope you're finding some relief these days ?

Despite all this,a sons duty is to his old mum in the winter of her life..her results are tomorrow.

Dinner ? - Most definitely !

Stay well and sincerely appreciated.

[Jim Allen]

Hiya.

What can I say, the Irish healthcare, as you know it isn't great. Glad we have it but it's a disjointed, mismanaged mess.

Anyhow, wanted to check how are you holding up?
Hope your mum remains safe and that you haven't developed any COVID complications.

Jim.

[paintedroom]

Don't mean to fence you in Jim but you're a bloody saint !

I was completely asymptomatic on the covid front which was an enormous relief.Don't let anybody kid you,waiting for the other shoe to drop is no fun at all.

My mother was negative thank christ.I could have dealt with anything rather than witness her slowly winking out.This close encounter really sends my heart out to all those that lost a family member.My sister has a friend that lost both parents to covid and not a single family member including both parents,were able to comfort each other in their final weeks.

All biopsies were negative.

My GP has now referred me to a specialist and personal friend of his in James's, as i might be waiting for months with the Eye and Ear...so im waiting for the call there...hopefully very soon.

Whats to add ? - Lots of dark anticipation as anyone whose been down this track knows...but we HIV'ers are a tough lot and as im deep into middle age,no tender hearted novice either ; )


Hope all well with you and that you're not spreading yourself too thin ? P.

[paintedroom]

Hey all.Well i left this one for a while and am not sure where to begin so i'll just give you the bones.

This post is not looking for sympathy so please feel no need to comment,its really meant just as a resource for those looking for info on HIV and tongue cancer(apparently we're vulnerable to it).

If i was to list the number of scans,blood tests,procedures,Doctors and Professors i've seen over the last 2 years,i'd be here all night.Suffice to say the throat problems and headaches,which were misdiagnosed at 14 months,turned out to be tongue cancer.The diagnosis took nearly 18 months and has left me with a speech impairment.I got the results of my treatment - Chemo and 35 sessions of radiation,a week and a half ago and im now cancer free ! The treatment was brutal and i was hospitalized for a month because i was just too weak and skeletal toward the end.I lost 63lbs.

I've now gained back 16lbs and look healthy again and am in good spirits.I just wanted to put this up here as it was such a brutal fight and perhaps someone struggling with the same problem can have access to a first hand experience - Message me and obviously i will further elaborate.I was told by the Prof. that those that suffer from this are usually from the inner city where alcohol and tobacco are the main cause..and those with HIV.

Wishing everyone a Christmas without worries,take care and always make sure to get satisfactory answers from your health care providors.Yes be respectful..but don't be too deferential.

P.

Not sure Jim if this should go under a tongue cancer heading ?

[Jim Allen]

Hiya, 

I'm travelling and missed this update, I apologize for not responding sooner.

Really sorry to hear you have been through this but glad to hear your spirits are high and you are looking healthy again.

I know oral cancer including the tongue sadly is on the rise here and two people I know have been through this as well. I don't feel there is much awareness around this as a topic.

[paintedroom]

No apologies necessary at all Jim.

Hope all well and Happy New Year.