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Main Forums => Pre-HAART Long-Term Survivors => Topic started by: Theyer on January 23, 2014, 04:33:52 pm

Title: er lets call it convelesing
Post by: Theyer on January 23, 2014, 04:33:52 pm
Dear hearts.

Its been a particularly poorly week. Two big medical appointments have been attended to. While in Hospital a cat Scan revealed that my spleen had grown since the last time it posed and quite a few off my lymph nodes where swollen, however no biopsies as all indications regarding infection showed that I was clearing all active infection. Yesterday I  saw for the first time my new GP , who assumed from my discharge report that my Hodgkin had return, I said that was not the conclusion off the HIV/oncology team.

Today I met with my HIV doctor off 15 + years , and it is agreed that the swollen lymph nodes need to be kept an eye on especially as I still feel very unwell. I meet with him in 4 weeks time and am encouraged to contact him in the meantime , a Scan will occur after that meeting if my health and bloods indicate its needed.

In the meantime I am crunching morphine sulphate and that gets me off the sofa for a couple off hours a day .

As those off you who know I write these sum up,s so that firstly I am clear about whats going on , else it can just seem like blundering from one medical environment to the other.

Hopefully the tone will gain some more glitter in the coming weeks.

A word off heart felt thanks to friends who are walking Mia , dealing with mind shattering idiotic bureaucracy totally stripped off any empathetic input , and putting up with groans.

Later as the babies say , futurama as I reply to there general confusion.
Michael

Title: Re: er lets call it convelesing
Post by: Jeff G on January 23, 2014, 05:20:10 pm
Theyer my dear man . We really must stop meeting this way . Cheery-O- .

Please look after yourself and keep us updated . Hugles .
Title: Re: er lets call it convelesing
Post by: britchick on January 24, 2014, 04:47:14 pm
(((Theyer)))

Im so sorry to hear that you are not feeling so great.Please take it easy, rest up,  and let your friends  continue to look after you and Mia.

britchickxxx
Title: Re: er lets call it convelesing
Post by: britchick on January 24, 2014, 04:49:30 pm
OMG sorry didnt realise pre haart thread again : ;)
britchickx
Title: Re: er lets call it convelesing
Post by: wolfter on January 24, 2014, 08:10:27 pm
Sorry you're dealing with such difficulties.  Sending lots of positive energy your way.  Take care of yourself.

hugs
wolfie
Title: Re: er lets call it convelesing
Post by: BT65 on January 25, 2014, 03:50:04 am
Oh Michael, so sorry to read of your challenges.  Please watch yourself, I'm sending kisses (do you feel them)!

Betty
Title: Re: er lets call it convelesing
Post by: Jeff G on January 25, 2014, 08:34:47 am
Oh Michael, so sorry to read of your challenges.  Please watch yourself, I'm sending kisses (do you feel them)!

Betty

I feel them Betty ... your sense of direction must be off today .

Michael ... I am hoping today is a better one . Hugs .
Title: Re: er lets call it convelesing
Post by: Theyer on January 25, 2014, 03:09:16 pm
Betty your sense off direction is perfect,

No temp today eaten 3 small meals ,reading Margery Allingham short stories , arm still part immobilized by vaccine shot , tinnitus and eye pain right down so more comfort than I have had this week . Would like my Batman to run a bath and prepare all the pills,powder, hot chocolate , warm the towels , pyjamas and dressing gown , prepare hot water bottle but he is away at the annual convention off imaginary servants.

Weather is very wet and uninviting forecast is more tomorrow entertained with thunder and lightning this afternoon , used less morph today . Would love to get out off the flat and walk the dog , illness is very very boring..

mod to add Happy Birthday Mr Wump.
Title: Re: er lets call it convelesing
Post by: BT65 on January 25, 2014, 07:32:53 pm
Michael, I'm glad you were able to eat without having a dreaded fever.  I hope you continue to improve.  If I were there, I would draw you a nice hot bath.  In fact, if you had two tubs, I would also draw myself a hot bath and we could gossip while soaking!
Title: Re: er lets call it convelesing
Post by: Jeff G on January 25, 2014, 07:35:57 pm
Michael, I'm glad you were able to eat without having a dreaded fever.  I hope you continue to improve.  If I were there, I would draw you a nice hot bath.  In fact, if you had two tubs, I would also draw myself a hot bath and we could gossip while soaking!

That's an erectile drug commercial you know ?
Title: Re: er lets call it convelesing
Post by: BT65 on January 25, 2014, 07:52:06 pm
That's an erectile drug commercial you know ?

It is?!  Woops.
Title: Re: er lets call it convelesing
Post by: Theyer on January 27, 2014, 04:21:21 pm
Michael, I'm glad you were able to eat without having a dreaded fever.  I hope you continue to improve.  If I were there, I would draw you a nice hot bath.  In fact, if you had two tubs, I would also draw myself a hot bath and we could gossip while soaking!

Oh lovely
Title: Re: er lets call it convelesing
Post by: Theyer on January 27, 2014, 04:23:13 pm
That's an erectile drug commercial you know ?

When one,s knowledge is wide a little edit would not go a miss
Title: Re: er lets call it convelesing
Post by: Theyer on January 30, 2014, 06:57:33 am
After a couple off days without temp I spent yesterday dosing one , and again dealing with the eye ache. On top off that a visit from my landlords surveyor went arse up ,with me up setting a good friend into the general mix , who had done a lot off work on my behalf with the landlords.

I cannot cope with anything when I have even the slightest temp, my brain goes to mush and I am extremely emotional and thin skinned. Mostly I am able to use this knowledge and take steps to avoid, delay anything required off me. But some days you cannot take aversion action and bingo a mess.

This am the temp is back dosed down now , spoken to the clinic if it contines I am to contact. Its OK if I can just keep myself to myself , my danger points are dealing with bureaucracy , all Patient goes and in no time I am feeling persecuted by them ,what was inefficient becomes a personal attack .

Then it brings up the fact that the problem would not exist if I had the money to pay for work myself.

This is what I did when I had the money , it got the jobs done and the council/landlord out . This action has come back to bite as it has been said by the council that I had never requested certain repairs , its hard to make them realize that was because every penny spent was worth it as it kept there special brand off madness away.

A bit off a rant , but it is not a straight forward time and to ensure damage limitation I am keeping self to self , opinion lock down.
Title: Re: er lets call it convelesing
Post by: rondrond on January 31, 2014, 07:28:25 am
Rant away....you've earned it....

I rant with caution myself these days as there are just some things that deserve to have a good talking about as they really are just ludicrous (it's a word..i hope)
Title: Re: er lets call it convelesing
Post by: Theyer on February 07, 2014, 02:07:39 pm
I would just like to record that today I got out, shopped,picked up drugs, spent a pleasent hour chatting on Skype , have had NO physical complaints all day. None , I am now going to join my dog on the Sofa , read drink Tea eat chocolate. I thank you.
Title: Re: er lets call it convelesing
Post by: Jeff G on February 07, 2014, 04:04:19 pm
I would just like to record that today I got out, shopped,picked up drugs, spent a pleasent hour chatting on Skype , have had NO physical complaints all day. None , I am now going to join my dog on the Sofa , read drink Tea eat chocolate. I thank you.

Well ... there is always tomorrow  :o .
Title: Re: er lets call it convelesing
Post by: Theyer on February 07, 2014, 04:39:51 pm
Well ... there is always tomorrow  :o .

Sadly so true oh wee-er on my walk . We shall see ,I expect you will get to hear one way or another.

More shopping tonight?

mhtv



Title: Re: er lets call it convelesing
Post by: Jeff G on February 07, 2014, 04:56:57 pm
Sadly so true oh wee-er on my walk . We shall see ,I expect you will get to hear one way or another.

More shopping tonight?

mhtv





One never knows when a craving can hit for pie or pork chop at 3 in morning ... so I have a WallMart a mere block away . 
Title: Re: er lets call it convelesing
Post by: Theyer on February 12, 2014, 03:10:12 pm
I am overcome with rapture as I approach my first week of no physical illness since September , as I said to a friend evan feeling tired when well is nicer. Tomorrow I go for full bloods that my HIV doc and I will meet and discuss the last week off Feb .

And , if the weather Gods allow, I will get to travel to the Lake District on Friday without being Pilled to the Gills on my famous how to travel when ill with out arrest combo .

Pip-Pip
m
Title: Re: er lets call it convelesing
Post by: wolfter on February 12, 2014, 04:29:16 pm
Glad to hear that you're finally getting relief.  Enjoy your little adventure.

Greg
Title: Re: er lets call it convelesing
Post by: Theyer on February 28, 2014, 06:35:14 am
Yesterday was good news day.

I met with my HIV Doc to evaluate the past two months blood work and there is no need to mount any further investigations into the return off the dreaded Hodgkin. I was dancing for Joy inside though as I was having day 2 off very bone bruised feet I just jiggled from the waist up.

Emotionally its not surprising I guess that the past two days saw a return to exhausted sleeping, I had also had a good run ,nearly 4 weeks without it and had returned from the Lake district and generally had been , for me pretty actice .

What the blood work also showed was that my testosterone collapsed during the hospital stay and had not recovered , so due to the osteoporosis I opted for the 3 month depo injection.

This is somewhat off a challenge for the terminally buttockly challenged and I appreciated Jody<s skill and assurance which made the procedure as good as it could be .

Due to our Governments manic interference with all things health I now have to have the other injections at my GP,s , and unless the Orkney Doc is prepared to have the cost off it out of there budject it means getting back to London at the beginning off June.

But it would be churlish to concentrate on that . I    do    no   have   a    recurrence    off     the    Hodgkin and I am one very relieved old aids fart with a very sore right buttock.
Title: Re: er lets call it convelesing
Post by: mitch777 on February 28, 2014, 10:48:15 am
So happy for you Michael! Great news!!  :)
Title: Re: er lets call it convelesing
Post by: Theyer on February 28, 2014, 11:19:10 am
Thank you Mitch its such a pleasure to write about good health things .
Title: Re: er lets call it convelesing
Post by: aztecan on March 05, 2014, 10:08:20 pm
Hey Michael,

I have been remiss in keeping up. I am very glad you are feeling better.

It sounds like the sore tush was worth it.

HUGS,

Mark
Title: Re: er lets call it convelesing
Post by: Theyer on March 09, 2014, 06:28:50 am
During the Hospital stay a referral was made for me to be an in patient at a Hospice 5 mins from the London Flat. I had been an in patient there during and after the last Hodkin,s treatment , Anyway I was too healthy , for the inpatients but not for the day patients and the assessment interview was on Friday.

Outcome , I start Physiotherapy This coming Tuesday . Can have access to a range off complementary doings which I will take up in the Autumn as I want the summer in Orkney.

What I had confirmed for myself is that this is where I can get services that I got 8 years plus ago on the grounds off having an AIDS defining episode. These are no longer but I can access good services through the Cancer route. So UK folks in similar situation please note.

The Hospice is a delightful place , very much a part off Clapham , hopefully my link below will work.

http://www.trinityhospice.org.uk/support (http://www.trinityhospice.org.uk/support)
Title: Re: er lets call it convelesing
Post by: Theyer on March 15, 2014, 10:03:32 am
There is no doubt about it I am having a wobbly. After a good month last Monday the feet/body pain came on with a vengeance and I have spent the week on the sofa. Most off the pain gone but the ball off my right foot never ease,s up and I have accepted that there is never now time without pain, I am just able to deal with at times better.

The fact that it is never going to go has to be accepted but its bought me low.
Title: Re: er lets call it convelesing
Post by: mitch777 on March 16, 2014, 12:34:38 pm
While my chronic pain is at the opposite end of the body I know it's not easy.

Here's hoping you have another good month coming your way soon. :)
Title: Re: er lets call it convelesing
Post by: BT65 on March 16, 2014, 01:24:42 pm
Michael, I'm sorry you're in constant pain, and I can definitely relate.  I can't think of the last time I was pain-free, probably when I was under anesthesia during my last operation lol.

That Hospice sounds really nice with their outpatient therapies.  It would be nice if that were universal.  I'm sure you will do well!  I'm thinking of you. :-*
Title: Re: er lets call it convelesing
Post by: Theyer on March 26, 2014, 06:08:04 pm
Problem off the week is dental. Gums are very sore , dentist yesterday and tomorrow. The day patient thing at the Hospice is slightly overwhelming as they are being so pro-active . So I now have 6 weeks off physio aimed at maintaining/increasing balance, reflexology, and next week meeting with a volunteer who will help with the never ending project off decorating.

Completed  the form all UK folk who are receiving disability benefit are having to do , I loath any form to do with HIV and have over the years created merry ding dong with them. Am glad to say have matured enough to have found a system that works now for me and gets them done, this one is a record as its only 6 months late.

However today is the Ist anniversary off my Mothers death .And that has dominated all,The sense off time flying by is not at the moment comfortable , cannot quite articulate why I feel disturbed but disturbed I am. In a very quite reflective way , not mumbling in the street way. At the moment there is too much loss. Off loved ones and the life I thought I would have .
Hey-ho
m
Title: Re: er lets call it convelesing
Post by: BT65 on March 26, 2014, 07:20:57 pm
Michael, I get it.  Anniversaries of significant dates sneak up on us, and we don't always realize why.  But the feelings of despondency often pass, sometimes slowly, other times more quickly.

It sounds like you've got a good system there for your physical, dental etc. needs.  I'm so glad.  I wish the Hospice here was like the one there.  Good luck with it all.  I'm wishing you the best!

Betty
Title: Re: er lets call it convelesing
Post by: Theyer on March 28, 2014, 04:50:38 pm
Thanks Betty , its also Mothers Day this weekend in the UK and I do find many things poignant about it.As the single sibling my role was to spend it with her if she was not travelling to stay with Brother and Sister , which due to 10 years off ill health before her death was enough for it to be a pattern for me .But the disturbance has settled and I feel OK and pleased that I completed ,for me , a very busy active week.

The Dental work is too advanced for my dentist and she has referred me back to the Hospital .The sore month is due to minute tooth moments ,rubbing gums and I now have a pain relieving mouth wash and gel and pastels to create saliva .

My physiotherapists is excellent and is researching through her network a comprehensive foot care clinic. I do get benefit from her manipulation though at times it is unbearable  then delightfull. The end result is  more flexible ankle,s and feet. Next week I have the first reflexology and group physio sessions.

I hope you are enjoying the MOD role and your own recovery is tip top.
Title: Re: er lets call it convelesing
Post by: Theyer on April 01, 2014, 07:50:17 am
At last I can add something positive.The reflexology and physiotherapy have helped beyond the very pleasant experience off having them.I am having less fluid build up at the end off the day at sock elastic rim, and the feet do not fell like blocks off concrete , this wears off before the next appointment but its the first sign off improvement for a very long time . Pip- PIP for sure.
Title: Re: er lets call it convelesing
Post by: mitch777 on April 03, 2014, 11:38:43 am
At last I can add something positive.The reflexology and physiotherapy have helped beyond the very pleasant experience off having them.I am having less fluid build up at the end off the day at sock elastic rim, and the feet do not fell like blocks off concrete , this wears off before the next appointment but its the first sign off improvement for a very long time . Pip- PIP for sure.

That's good news! Hope your feetsies continue to improve!
Title: Re: er lets call it convelesing
Post by: BT65 on April 03, 2014, 01:36:30 pm
That's great, Michael!  So, the reflexology helps quite a bit?  I've never had it done, but it does sound interesting.  I hope you continue to improve.

My recovery is going well.  Still can't lift anything heavy (at least not that I can tell anyone lol).  See the surgeon on the 15th, hopefully he'll release me from any restrictions. 
Title: Re: er lets call it convelesing
Post by: Theyer on April 04, 2014, 06:44:17 am
That's great, Michael!  So, the reflexology helps quite a bit?  I've never had it done, but it does sound interesting.  I hope you continue to improve.

My recovery is going well.  Still can't lift anything heavy (at least not that I can tell anyone lol).  See the surgeon on the 15th, hopefully he'll release me from any restrictions.

I am Finger wagging you Missy , no can,t keep it up giggling instead .

Thanks for the feedback Mitch and Betty , I think I will keep this thread going for ever as the title I like very much , it sums up the past 10 years and convalescing is nicer than fucked or crap more Jane Austin than Irving Walsh.
I had the first group gym session this week . I was on my best behaviour but I do not know how I will resist showing the darker side off what amuses me with a room full off people with serious Cancers doing a work out.

All is crossed for the 15 Betty dear , just walk into the room singing   ' Please release me let me go..........For I,ve no gold to pay your bill ........
Title: Re: er lets call it convelesing
Post by: BT65 on April 04, 2014, 03:00:41 pm
Michael, I just love you, you have such a sharp wit.  Now, what is the "group gym session?"  I mean, what do you do in this?
Title: Re: er lets call it convelesing
Post by: Theyer on April 05, 2014, 09:55:57 am
I lifted tiny handweights that usually come in Pink. They must be hugely expensive as the metal was so dense making  them surprisingly heavy. I had 3 differing ways to lift them.
I walk on springy foam between parallel bars stop with one foot  directly in front of the other touching and remain stationary.
I bicycle on a machine and think about advanced societies ability to create objects like a stationary bicycle.
I try to remain upright and still on a big inflated plastic/rubber pimple/
I sit, strap leg weights around my ankles and then lift legs and hold  the lift for 10 secs. The leg weights are made from the same dense material as the pink things.
I place a large inflated beach ball between the small off my back and the wall ,bend my knees until I am swatting ,rise. Repeat.
When i have completed a task I tick it off on my personal exercise list.
Each off us do one off these exercises for 90 seconds , stop , move on to the next and start again for 90 seconds .
Two sets.
Stretching warm up /cool down movements beginning and end off session
The big boys played on a rowing machine , and a small trampoline , Miss said she would see when I could.
Title: Re: er lets call it convelesing
Post by: Miss Philicia on April 05, 2014, 10:03:44 am
Sounds all very similar to what I just finished doing for 2.5 months of physical therapy.
Title: Re: er lets call it convelesing
Post by: Theyer on April 05, 2014, 04:42:33 pm
Sounds all very similar to what I just finished doing for 2.5 months of physical therapy.

I enjoyed it and I think you did also , what I think was skilled is that although I slept until 1 pm then again till 6pm I do not have any aches or pains like I usually do after a bout off physical activity above the norm, sanding for decorating say, which has had me groaning the next day.

Well paced by the physio,s . Hopefully I will be awake tomorrow.
Title: Re: er lets call it convelesing
Post by: Theyer on April 28, 2014, 08:18:25 am
Health wise its been a bad 4 weeks with anti bee treatment for Pee infection that the Doc wants to Talk to me about.

However last 4 days much better and am about to fling myself off the wagon with some jolly good herbal remedies because I want to , very much indeed.

PIP PIP
Title: Re: er lets call it convelesing
Post by: Miss Philicia on April 28, 2014, 08:58:21 am
I enjoyed it and I think you did also

I don't detest it so much that I skip sessions, but I would not use the word "enjoy" when just riding the stationary bikes hurt because I have no fat on my ass.

It's also been six weeks since my last session and I've yet to receive any billing from them which is quite odd.
Title: Re: er lets call it convelesing
Post by: wolfter on April 28, 2014, 06:57:25 pm
Health wise its been a bad 4 weeks with anti bee treatment for Pee infection that the Doc wants to Talk to me about.

However last 4 days much better and am about to fling myself off the wagon with some jolly good herbal remedies because I want to , very much indeed.

PIP PIP

toke away, hope you continue to see improvements.
Title: Re: er lets call it convelesing
Post by: Theyer on April 29, 2014, 07:05:54 am
I don't detest it so much that I skip sessions, but I would not use the word "enjoy" when just riding the stationary bikes hurt because I have no fat on my ass.

It's also been six weeks since my last session and I've yet to receive any billing from them which is quite odd.

It was the last activity before the 4 weeks off Pee infection.
Title: Re: er lets call it convelesing
Post by: Theyer on May 06, 2014, 07:25:58 am
Its mid day and I still have to eat  dress etc. I have had yet another sleep a thon 24 hours and am feeling disturbed. Have to take this to the Doc. I am working towards going to pick up drugs at the clinic. While I am there I will get bloods done and book an appointment to discuss it.

Am Low at the moment , very low.
Title: Re: er lets call it convelesing
Post by: Theyer on May 06, 2014, 03:22:12 pm
8pm . Got to the Hospital , two vials off blood +urine sample see my Doc on Thurs, which I am most impressed by , then depressed by as I realize that with 8000 people attending the clinic you have to be a real old grizzled aidsie to get such lovely quick treatment. I have earned it as there has not been a time I have been there with out really really needing it.

Entire time out felt that I could collapse at any time, on the bus a middle aged lady suddenly became a Jack-in-the-box so quickly did she leap out off the disabled seat for a grateful me , the Taxi driver who concluded the journey home offered assistance too, so I conclude I looked as good as I felt.

However as is often the case with me I feel better in the evening , lunch was good at Carluccio,s wild mushroom & smoked Bacon soup + fancy breads and a Choc bread and current pudding with vanilla sauce , espresso double and I was fast asleep one hour after it, think I am immune to caffeine.

See what tomorrow brings.
Title: Re: er lets call it convelesing
Post by: mitch777 on May 06, 2014, 06:33:08 pm
Sorry you are feeling so wiped lately Michael. Nice to hear people have been kind along the way.

Wishing you the best with Thursdays appointment and hope you stay impressed with your doc.

You usually feel better in the evening? My best hours are between 11AM-3PM. A short window if I want to get anything done.

btw, the soup sounds delish but I'm always skeptical about you Brits and what you call a pudding. lol. Caffeine wires me out for hours but not in a good way. Jitters.

hugs.



 
Title: Re: er lets call it convelesing
Post by: Kardean on May 07, 2014, 07:48:35 am
"Windows" of feeling better?  Is there any rhyme or reason you know of?  Is it the meds maybe?
Title: Re: er lets call it convelesing
Post by: Jeff G on May 07, 2014, 07:54:16 am
"Windows" of feeling better?  Is there any rhyme or reason you know of?  Is it the meds maybe?

I am not speaking for Theyer but allot of us long timers that suffered extensive damage from HIV have our good days and bad days or even moments . I can sometime work harder than most people I know only to find myself in bed for days or weeks at other times .

We treat what we can and live with the rest best we can . 
Title: Re: er lets call it convelesing
Post by: Kardean on May 07, 2014, 08:00:35 am
I am not speaking for Theyer but allot of us long timers that suffered extensive damage from HIV have our good days and bad days or even moments . I can sometime work harder than most people I know only to find myself in bed for days or weeks at other times .

We treat what we can and live with the rest best we can .

What sort of damage may I ask?  Don't mean to be nosey... just curious.  The HIV itself or the treatment?
Title: Re: er lets call it convelesing
Post by: Jeff G on May 07, 2014, 08:15:26 am
What sort of damage may I ask?  Don't mean to be nosey... just curious.  The HIV itself or the treatment?

Some of the drugs we took back in the 80's and 90's gave us nerve damage and in my case metabolic problems that led to diabetes . I also went through years of chemo therapy for Kaposi Sarcoma and have major damage to the nerves in my legs and arms and feet .

Untreated HIV can also cause many problems that are similar to what some of us deal with .
Title: Re: er lets call it convelesing
Post by: Jeff G on May 07, 2014, 08:19:56 am
Im just waking up and I realized this is the LTS forum . Kardean ... this forum is only for LTS that were diagnosed before 1996 . I apologize that I didn't notice sooner that you are not permitted to post in this forum . 
Title: Re: er lets call it convelesing
Post by: Theyer on May 07, 2014, 08:30:01 am
Main offenders for damage chemo 9 months 1994 then 2001 for 4 months ,for Hodkins Lymphoma in 94 , Aids related Hodkins Lymphoma in 2001. Then add early treatment mono AZT , DDI in first combo treatment , dosage early days pitched too high , no ones fault everybody in the same boat. Plus the damage having HIV since 1986 ish. Theres more I am tired at the moment and the list would be depressing.

Its why us LTS ,no its why I sometimes can get very crusty with the I have just been diagnosed and the worries folk have to deal with, I don,t comment its not fair to the individuals involved , me or them. However the poster London followed by numbers comes along with a great thread and that quickly restores balance.

Its OK to ask ?, if anything its wanted .
Title: Re: er lets call it convelesing
Post by: Theyer on May 07, 2014, 08:32:03 am
If you are not LTS you can PM.
Hello Jeff, Aunties arrived?
Title: Re: er lets call it convelesing
Post by: Jeff G on May 07, 2014, 08:43:20 am
If you are not LTS you can PM.
Hello Jeff, Aunties arrived?

I have to fetch them on Saturday and chauffeur them to see my Ma ... they are actually fun to hang out with except for the high maintenance part .   
Title: Re: er lets call it convelesing
Post by: Theyer on May 07, 2014, 08:46:42 am
I have to fetch them on Saturday and chauffeur them to see my Ma ... they are actually fun to hang out with except for the high maintenance part .

That,s good to here that there Fun.
Title: Re: er lets call it convelesing
Post by: Theyer on May 07, 2014, 04:41:44 pm
Sorry you are feeling so wiped lately Michael. Nice to hear people have been kind along the way.

Wishing you the best with Thursdays appointment and hope you stay impressed with your doc.

You usually feel better in the evening? My best hours are between 11AM-3PM. A short window if I want to get anything done.

btw, the soup sounds delish but I'm always skeptical about you Brits and what you call a pudding. lol. Caffeine wires me out for hours but not in a good way. Jitters.

hugs.

Thanks Mitch I some how missed this , I feel physically better than when I posted but that's what happens. The important thing was to get blood drawn while going through the sleep a thon. So we will see if Dr D has any news from the bloods , tomorrow. I am apprehensive and quiet. Hey ho .
Title: Re: er lets call it convelesing
Post by: Kardean on May 07, 2014, 10:56:49 pm
I'm just waking up and I realized this is the LTS forum . Kardean ... this forum is only for LTS that were diagnosed before 1996 . I apologize that I didn't notice sooner that you are not permitted to post in this forum .

I'm sorry.... relatively new and didn't know the "rule".  Please forgive me.  :-[
Title: Re: er lets call it convelesing
Post by: BT65 on May 08, 2014, 02:33:34 am
Thanks Mitch I some how missed this , I feel physically better than when I posted but that's what happens. The important thing was to get blood drawn while going through the sleep a thon. So we will see if Dr D has any news from the bloods , tomorrow. I am apprehensive and quiet. Hey ho .

I will be looking to see if you got news regarding your labs.  Please keep us informed!
Title: Re: er lets call it convelesing
Post by: Theyer on May 08, 2014, 05:43:18 pm
Visit to Dr .D hiv Doc today.

The Blood and Urine taken on Tuesday during a sleep a thon time which since Dec I have had at least twice a month gave no clues. These times are just like having a urine infection but with out the pain urinating.

So between now and June 5 when I meet again with Dr D I am to have ultrasound to see if I have Kidney stones again , and a CT Scan to see if there are any Hodgkin lymphoma tumours.

Plus a referral to the Urology dept for a ,camera up the penis job , which fills me with dread .

The Dental work starts on May 18.

Also came away with anti biotics in case I do get my 5th urine infection since Sep off last year.

So that's it apart from a curt spat out BOLLOCKS
Title: Re: er lets call it convelesing
Post by: BT65 on May 09, 2014, 06:42:57 am
You certainly do have a lot going on, Michael.  I hope there's no kidney stones or lymphoma.  You poor man, with what you deal with, I'm surprised you do so well.   
Title: Re: er lets call it convelesing
Post by: AlanBama on May 09, 2014, 04:22:45 pm
You really do have a LOT going on, buddy.  I hate that....wish you could get to the bottom of some of these problems.   Now, the camera in the penis part --  I can TOTALLY relate to;I had some prostate procedures done (without being put to sleep) so there's not much to do, but grit your teeth, and bear it.   It was some tough pain, though, I do know that.

Hugs to you from beautiful (but ignorant!) North Alabama, USA !!!

Alan
Title: Re: er lets call it convelesing
Post by: Theyer on May 14, 2014, 03:13:34 pm
Had the CT scan today, easy , though the day was very tiring.
Title: Re: er lets call it convelesing
Post by: mitch777 on May 15, 2014, 09:49:49 am
Had the CT scan today, easy , though the day was very tiring.

 One test to be crossed off of your list. Hoping for good news Michael!

Title: Re: er lets call it convelesing
Post by: Theyer on May 21, 2014, 08:40:33 am
Thank you darlings for the replies.

Dentist this Tuesday no actual work done , 3D X-ray , scratching off head and yet another referral to specialist team , Reconstructive Dentestry ,appointment arrived today 2 June.

And to mark such progress my other front 2nd tooth snapped off last night . clearly by the time I get into a dentist chair there will be no teeth left.

Well lets see what 2 june brings its also the day off the cat scan or ultrasound cant remember which.

Feel particularly foot stamping as yesterday I did some Gardening fully expecting a
flat out day today , the delight lasted 2 mins till I realized through sleep fog that yet another bloody Gap is in my Gob.
Title: Re: er lets call it convelesing
Post by: mitch777 on May 21, 2014, 01:55:25 pm
Dearest Michael, just when I hear you get one thing crossed off of your list another is added. At least you already have an appointment. Ugh.
Title: Re: er lets call it convelesing
Post by: Theyer on May 24, 2014, 11:17:46 am
Its 4pm and I am beginning to feel able to leave the house. Am reflecting on depression , when is an intervention necessary? I am not that cheerful at the moment , however that disappears when some physical energy comes , however it certainly comes rolling back as soon as illness comes in. To add to a years crumbling t cells , crumbling mouth , my right tit has a hard and painfull lump there. Think I have had this before  , in fact certain , my reaction? I will wait till the 5 June when I see my Doc. Nothing else apart from the fact that I think I should feel more , so am I depressed? ill and have no energy left? just had too many things go wrong to get worried about something new? I have no idea.
Title: Re: er lets call it convelesing
Post by: Jeff G on May 24, 2014, 11:44:28 am
I am worried about you Micheal . I relate to what you are saying about the revolving door of depression ... what you shared struck a note with me .

I ask the same questions as you have because its gone on for so long ... I do think you are depressed from what you share and its no wonder you feel the way you do . Im glad you are talking about ... and wish I could help you . Hugs .   
Title: Re: er lets call it convelesing
Post by: mitch777 on May 24, 2014, 02:46:34 pm


I'm worried about you too Michael. "Revolving door of depression" seems so fitting and familiar and not being able to "feel more" is exactly what happens to me when I'm down.

Cher's famous line "snap out of it" never worked for me. I just kind of roll out of it somehow and sometimes it takes awhile. Hoping to see you feeling better in all respects soon.

(((Michael)))



Title: Re: er lets call it convelesing
Post by: Theyer on May 24, 2014, 05:47:18 pm
Yes well I guess I would be worried if it was you lot, I am worried all off this is familiar to something horrible brewing.It took 18 months and losing 20lbs before the first bout off Hodgkin got diagnosed and if it has come back I don,t know what can be done given that the treatment kills me. Fact not overreacting.

I do feel better by evening which I know is a symptom off depression , but the physical problems are the same in the evening.

One off the problems dealing with long term illness is you would have to be insane not to get depressed , to me its the sane reaction.

The sane reaction is to get a little insane maybe.


I'm worried about you too Michael. "Revolving door of depression" seems so fitting and familiar and not being able to "feel more" is exactly what happens to me when I'm down.

Cher's famous line "snap out of it" never worked for me. I just kind of roll out of it somehow and sometimes it takes awhile. Hoping to see you feeling better in all respects soon.

(((Michael)))





Well I guess to be fair she has never claimed to be Freud but snapping out off it when said to someone who is clinically depressed translates to

"go away I cannot stand your pain/presence"

Which is fair enough as the person depressed cannot stand themselves also, however it does not lead to humanity improving  or a Person getting rid off there depression.

Any thoughts folks I am beginning to feel I am typing to 3 people ,4 when I include myself, but then this is LTS and I am excluding others by keeping these notes here. Still its worth it , for me ,I think.
Title: Re: er lets call it convelesing
Post by: Jeff G on May 24, 2014, 06:05:56 pm
Are you all alone right now ? . I know you have some close friends that come by and I hope they are around to offer support and friendship as well as all of here that love you dearly .

Any thing I say seems so inadequate because I see you are clearly at wits end . I hope you can at least go to the convelecent place you told me about and let them care for you awhile until you are feeling better ... you have told me before that you found that place comforting . Is this an option or something you would want ? 
Title: Re: er lets call it convelesing
Post by: Theyer on May 24, 2014, 06:34:29 pm
Thanks Jeff .

But I must correct you I am not at my wits end just trying to be as clear as I can to focus myself.

I have been at my wits end , and come back. There are folk around if I want them but I do not at the moment , its too exhausting managing there reactions and my mine.

Better to go step by step , I am off to bed and book now , thanks for getting back to me, I like it , but I do not have the energy for company at the moment.
Title: Re: er lets call it convelesing
Post by: mitch777 on May 24, 2014, 06:38:35 pm
Feeling helpless myself. Just want to be there to hug you in person and to let you know that I hear you and that I care so much.

You always have put a smile in my heart when I was feeling down.

The fear of dealing with another bad diagnosis with Hodgkins sucks to say the least, especially after having gone through it. Maybe another post in "living with hiv" will bring more support from others.

My heart goes out to you sweetheart.

Get some rest and soak up another reality in your book for the moment.

hugs!
Title: Re: er lets call it convelesing
Post by: Theyer on May 25, 2014, 04:17:02 am
Thank you and thanks also to those who PM,ed.

Feel better in all ways this morning , embarrassed about the nobody replies to me bit , hey ho not the first time will not be the last . This will not be resolved until I either get a diagnosis or am told nothing can be done apart from good management.

Anyone reading this unsure off the benefits off forum involvement , please note.
Title: Re: er lets call it convelesing
Post by: Miss Philicia on May 25, 2014, 07:28:37 am
I am glad you are feeling a bit better this morning. I got a bit lost catching up with this thread, as I was away for 10 days then caught up all week in my neurology drama.

As far as depression goes while dealing with multiple medical issues simultaneously I am not sure what to say -- only you along with a therapist can evaluate whether or not you would benefit from seeing someone regularly. Personally I have been going regularly during all of my endless crap but I was also going before it all began, and just once monthly as a sort of "check in" which I do somewhat to appease the paranoia (slight) of having had lost quite a few LTSers locally to suicide, even though I never have suicidal thoughts myself. It's kind of a security blanket and routine now, plus it costs me nothing. I chalk things up to a more general melancholy which is manageable rather than clinical depression, at least currently.

Naturally I completely empathaize about being in a position where you are tossed around like a rag doll and not feeling as if you have really received a complete diagnosis. That is where my melancholy morphs into something approaching a frustrating anger, which is never helpful when dealing with the medical establishment so I just bitch about it all to my therapist. Or Jeff. Or my mother.
Title: Re: er lets call it convelesing
Post by: Jeff G on May 25, 2014, 07:48:31 am
Glad you are feeling better . What a difference a day can make some times .
Title: Re: er lets call it convelesing
Post by: mitch777 on May 25, 2014, 05:14:15 pm
That's so good to hear Michael. Continued better days ahead!!
Title: Re: er lets call it convelesing
Post by: Buckmark on May 26, 2014, 08:51:55 am
...
One off the problems dealing with long term illness is you would have to be insane not to get depressed , to me its the sane reaction.

The sane reaction is to get a little insane maybe.
...

Michael, even in your current state, perhaps is helps to know that you are still helping others.  Your quote above really resonated with me.  The waiting.  The uncertainty.  The "tread mill" of tests, treatment, and doctors.  While my illness hasn't been as long as yours, my recent battle with cancer has been (at least) as much of a mental health challenge, as a physiological challenge, especially given I already had a rather long history of depression.  I had no idea what I was in for.

I have no magic words of advice for you, except that I am glad you are continuing to reach out to everyone here.  I've never been able to "snap out" of depression either.  What I have to find is some toe hold that stops me from falling further, before I can even think how I might start to climb up and out.  Reaching out to others usually provides me with that toe hold.


Title: Re: er lets call it convelesing
Post by: AlanBama on May 26, 2014, 05:05:27 pm
Glad you are feeling a little better!   You're in my thoughts, buddy...

Alan   :-*
Title: Re: er lets call it convelesing
Post by: wolfter on May 26, 2014, 09:12:22 pm
I hope everything continues on a great path.  I only read a few posts and will need to read further.  I saw some great comments and need to go back a little further before commenting too much.

Most of this is because my southern hills jargo doesn't have a quick conversion to cockney.  :D hugs, but it takes me a tad longer than most.

greg
Title: Re: er lets call it convelesing
Post by: Theyer on May 27, 2014, 05:15:40 pm
Many thanks one and all , I am feeling alot better having remained at home for 4 days and will take it very easy this week as the week after has 4 medical appointments and the , what do we do next , meeting with my Doc.

Have decided to return for a spell off therup , quickest route will be by the Hospice , and I see the physio there next week.

I have to say again thanks , and this is for Greg it,s left me feeling well jock strapped.

As well as the Posts there have been the most welcome PM,,s , so many thanks.
Title: Re: er lets call it convelesing
Post by: zach on May 27, 2014, 07:23:59 pm
 ;D

keep hangin on... if for no other reason, just cause it pisses the bastards off

(okok, leaving the lts board now, hehehehehee) seriously, i don't even read this forum... had no idea you were in the shit

pull it together man!
Title: Re: er lets call it convelesing
Post by: Jeff G on May 27, 2014, 07:27:14 pm
;D

keep hangin on... if for no other reason, just cause it pisses the bastards off

(okok, leaving the lts board now, hehehehehee) seriously, i don't even read this forum... had no idea you were in the shit

pull it together man!

This board is for us old pozzums so you take your new fangled aids on down the road to another forum you hear .   ;)
Title: Re: er lets call it convelesing
Post by: wolfter on May 28, 2014, 09:13:54 am


I have to say again thanks , and this is for Greg it,s left me feeling well jock strapped.


 ;D  I couldn't find a translation for feeling jock strapped.  Is that a good thing or a bad thing? ;)

greg
Title: Re: er lets call it convelesing
Post by: Theyer on May 28, 2014, 09:58:04 am
What does a JS do Greg ?

Why Michael it provides support for the males frock in the drawers 

Ah I see....whycantujustsayitplain

Because Greg my Brain does it weather I want to or not for good and or bad its what happens inside me head.

So instead off the boring therapy speak off being supported I am instead at times well Jock strapped.
Title: Re: er lets call it convelesing
Post by: mitch777 on May 28, 2014, 05:14:36 pm
Jock strapped. I like it. lol. 8)
Title: Re: er lets call it convelesing
Post by: Theyer on May 31, 2014, 10:47:17 am
I am writting this listening to an ex lover on the radio , happy to report no reaction off turmoil at all , rueful smiles , public and private , begs the question about these posts. Semi public semi private hopefully not semi detached.

Any way I think all in all its been a better week physically as up until yesterday I did not leave the house. Yesterdays walk meant 4 hours sleep from which I awoke feeling very sorry for self. Another walk today tired but thank God not feeling sorry for self.

Be glad to get get next week over , an appointment every day.

Have decided to seek counselling via the Hospice am very aware that things could be worse and I don,t want to waste any time being depressed.

Have enjoyed the posts and PM,s found myself telling others how helpful the forum was to me last weekend , giving credit where credits due.
Title: Re: er lets call it convelesing
Post by: mitch777 on May 31, 2014, 11:54:55 am
I'm sure you will be relieved to get over the hump of daily appointments next week. 

Happy to hear that the depression has loosened it's grip and that you are feeling a bit better physically. Also good to hear you will be backing it up with counseling as I find it helpful myself. A little extra reinforcement sometimes has made a big difference.

Wishing you my best next week. I'll be thinking of you dearheart.



Title: Re: er lets call it convelesing
Post by: BT65 on May 31, 2014, 02:49:26 pm
Michael, an appointment every day?  Ugh.  I hate appointments, and sometimes I cancel them a couple times before going in lol.  But I know you're tough, and can handle it.

Good for you for getting into some counseling.  I liked your comment about not wanting to waste time being depressed.  That's a good mantra and I'm going to try to remember it.

Good luck with the upcoming issues.  I think of you a lot, and hoping for the best for you, my friend.

Kisses,
Betty
Title: Re: er lets call it convelesing
Post by: wolfter on June 01, 2014, 07:45:30 am
My thoughts will be with you all week.  That sounds like a tough schedule. 

hugs
greg
Title: Re: er lets call it convelesing
Post by: Jeff G on June 01, 2014, 08:42:04 am
I hope you get a nice long break after your hectic doc visits wind down . Its good to hear you are seeing after yourself though ... it takes lots of work .
Title: Re: er lets call it convelesing
Post by: Theyer on June 04, 2014, 02:58:42 pm
Dentist have come to a decision which is head line news for me. after all its only taken 5 Dentists to get to the decision. Anyhow 4 teeth out 2 top 2 bottom 2 new plates made starts 27 June. Have to have Platlets test beforehand so that could very easily mean 2 days off transfusion before any teeth are moved.

So Dr D tomorrow to find out about cat scan and ultrasound results put in early morning phone call request from sister. My appointment is 1130 so I have to be woken at 0830 to stand a chance off being able to function at that un Godly hour.

Slept all day today , was about to go out and enjoy the evening sunshine but its a downpour now which kind off sums up this year.
Title: Re: er lets call it convelesing
Post by: Jeff G on June 04, 2014, 03:06:49 pm
Theyer ... you are due a break my man . Any day now you will be told you are fully doctored and you can go home and play with Mia and have a break ... I feel it coming . Hugs .
Title: Re: er lets call it convelesing
Post by: Theyer on June 04, 2014, 03:21:21 pm
So do I June 2019 I am realistically planning on at this rate , I am lifted by getting a decision , though the process from past experience is not pleasant, the extraction is fine drugged to high heaven , however 12 hours later a bruised and battered mouth kicks in and vigorous cleaning regime also has to start. The process off making molds for the dentures is not pleasant and they refuse the knock out drops for it .
Title: Re: er lets call it convelesing
Post by: wolfter on June 04, 2014, 04:35:49 pm
An old saying comes to mind; "begin with the end in mind".  With everything you're going to experience, concentrate on the end result.

hugs again
greg
Title: Re: er lets call it convelesing
Post by: mitch777 on June 04, 2014, 05:45:05 pm
You DO need a break Michael. In the mean time, I too get a lifted once I know what is planned but I despise dental work. I wish it could be a one step process.

Good luck tomorrow!
Title: Re: er lets call it convelesing
Post by: Theyer on June 04, 2014, 05:49:41 pm
An old saying comes to mind; "begin with the end in mind".  With everything you're going to experience, concentrate on the end result.

hugs again
greg

oh dear the first thing that came to  mind was my funeral.

Which by the way is not fully mapped out but does include people being well dressed , champagne, British strawberries if during the summer , Cornish cream tea if out of strawberry season. The music I am keeping as a surprise . Quite like the custom off hiring professional mourners who yelp and wail and carry on like theres no tomorrow. It saves every one else .
Title: Re: er lets call it convelesing
Post by: Jeff G on June 04, 2014, 06:00:59 pm
oh dear the first thing that came to  mind was my funeral.



I had to read it twice myself LOL .
Title: Re: er lets call it convelesing
Post by: Theyer on June 05, 2014, 02:00:53 pm
NO TUMOURS , theres lots more to report all about further investigations but WTF the only thing I want to concentrate on at the moment is NO TUMOURS lala    lala    la.

A little island off relieve ,which I would like to stay on for a long time. By the W/E I will write downall that's going to be done but today is just no TUMOURS day
Title: Re: er lets call it convelesing
Post by: Jeff G on June 05, 2014, 02:30:06 pm
NO TUMOURS , theres lots more to report all about further investigations but WTF the only thing I want to concentrate on at the moment is NO TUMOURS lala    lala    la.

A little island off relieve ,which I would like to stay on for a long time. By the W/E I will write downall that's going to be done but today is just no TUMOURS day


Congratulations !!! ... unless you were hoping for tumors then this would be a total disaster .

I do understand ... LTS are the only group that rejoice when we find out it was just run of the mill Aids that makes us feel like crap . You don't hear allot of people saying thank god, its was just Aids . 
Title: Re: er lets call it convelesing
Post by: Miss Philicia on June 05, 2014, 03:56:41 pm
Glad to read that!
Title: Re: er lets call it convelesing
Post by: mitch777 on June 05, 2014, 04:28:51 pm
Yay!  :-*
Title: Re: er lets call it convelesing
Post by: Theyer on June 05, 2014, 05:51:33 pm
Thank you dear friends ,I am very relieved .
Title: Re: er lets call it convelesing
Post by: Theyer on June 10, 2014, 04:24:06 pm
Well after the good news the last 2 days have seem a return to things as normal. London is enjoying fine Summer weather , I am experiencing it as though in mourning for The Lost Body , for 3 days I have slept 4 to 5 hours from the afternoon to early evening polaxed.

I wake loathing the waste off the Day.

To get this project completed the plans for the future
Dentistry see above,
Ultrasound and X-ray for painfull lump left tit mid June and 3 July/
Awaiting Urologist,counselling appointments.

3rd week July meeting with HIV DOC to look at results and plan.

added, Am awaiting to see if I qualify for a Drug trail aimed at those whose T-cells refuse to get above 400 , had blood test and its the results from that which will decide.Will give more info if I qualify.
Title: Re: er lets call it convelesing
Post by: Theyer on June 20, 2014, 12:39:33 pm
Just returned from foot massage at the Hospice by the physios and she checked my ribs for 10 Min's NO BREAKS oh joy she said the bruise follows the line of the rib cage and pinpointed where she felt the spasms are coming from . So pleased this ends here with no trips to yet more medical places.

So I fully intend to return to painting the walls tomorrow, really chuffed.
Title: Re: er lets call it convelesing
Post by: Theyer on June 24, 2014, 02:58:42 pm
I have had to cancell the tooth pulling due to the damage ribs being still very much off a problem.

This was not easy as the mouth work is in its second year and I was at last feeling that an end was in sight. I could manage getting to the hos for the procedure, what made me can cell is that I am not sure off being able to keep up the post pulling care.

Although the intense pain is gone and I am not needing constant pain killers , I awoke in the night in pain and have clearly put my back out . awkward , very painful at times , so I am not taking the risk plus I am intelligence impaired tired so I do not need to be put under , the mist could be dense fog with that .

I would have no doubt but the wait for another OP date could be ages. I am contacting the Physio tomorrow and will make plans with her.