Author Topic: er lets call it convelesing (Read 41854 times)

Jeff G · « **Reply #50 on:** May 07, 2014, 08:15:26 am »

Quote from: Kardean on May 07, 2014, 08:00:35 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 .

Jeff G · « **Reply #51 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 .

Theyer · « **Reply #52 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 .

Theyer · « **Reply #53 on:** May 07, 2014, 08:32:03 am »

If you are not LTS you can PM.
Hello Jeff, Aunties arrived?

Jeff G · « **Reply #54 on:** May 07, 2014, 08:43:20 am »

Quote from: Theyer on May 07, 2014, 08:32:03 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 .

Theyer · « **Reply #55 on:** May 07, 2014, 08:46:42 am »

Quote from: Jeff G on May 07, 2014, 08:43:20 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.

Theyer · « **Reply #56 on:** May 07, 2014, 04:41:44 pm »

Quote from: 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.

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 .

Kardean · « **Reply #57 on:** May 07, 2014, 10:56:49 pm »

Quote from: Jeff G on May 07, 2014, 08:19:56 am

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.

BT65 · « **Reply #58 on:** May 08, 2014, 02:33:34 am »

Quote from: Theyer on May 07, 2014, 04:41:44 pm

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!

Theyer · « **Reply #59 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

BT65 · « **Reply #60 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.

AlanBama · « **Reply #61 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

Theyer · « **Reply #62 on:** May 14, 2014, 03:13:34 pm »

Had the CT scan today, easy , though the day was very tiring.

mitch777 · « **Reply #63 on:** May 15, 2014, 09:49:49 am »

Quote from: Theyer on May 14, 2014, 03:13:34 pm

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!

Theyer · « **Reply #64 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.

mitch777 · « **Reply #65 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.

Theyer · « **Reply #66 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.

Jeff G · « **Reply #67 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 .

mitch777 · « **Reply #68 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)))

Theyer · « **Reply #69 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.

Quote from: 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)))

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.

Jeff G · « **Reply #70 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 ?

Theyer · « **Reply #71 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.

mitch777 · « **Reply #72 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!

Theyer · « **Reply #73 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.

Miss Philicia · « **Reply #74 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.

Jeff G · « **Reply #75 on:** May 25, 2014, 07:48:31 am »

Glad you are feeling better . What a difference a day can make some times .

mitch777 · « **Reply #76 on:** May 25, 2014, 05:14:15 pm »

That's so good to hear Michael. Continued better days ahead!!

Buckmark · « **Reply #77 on:** May 26, 2014, 08:51:55 am »

Quote from: Theyer on May 24, 2014, 05:47:18 pm

...
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.

AlanBama · « **Reply #78 on:** May 26, 2014, 05:05:27 pm »

Glad you are feeling a little better! You're in my thoughts, buddy...

Alan

wolfter · « **Reply #79 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.

hugs, but it takes me a tad longer than most.

greg

Theyer · « **Reply #80 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.

zach · « **Reply #81 on:** May 27, 2014, 07:23:59 pm »

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!

Jeff G · « **Reply #82 on:** May 27, 2014, 07:27:14 pm »

Quote from: zach on May 27, 2014, 07:23:59 pm

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 .

wolfter · « **Reply #83 on:** May 28, 2014, 09:13:54 am »

Quote from: Theyer on May 27, 2014, 05:15:40 pm

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

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

greg

Theyer · « **Reply #84 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.

mitch777 · « **Reply #85 on:** May 28, 2014, 05:14:36 pm »

Jock strapped. I like it. lol.

Theyer · « **Reply #86 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.

mitch777 · « **Reply #87 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.

BT65 · « **Reply #88 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

wolfter · « **Reply #89 on:** June 01, 2014, 07:45:30 am »

My thoughts will be with you all week. That sounds like a tough schedule.

hugs
greg

Jeff G · « **Reply #90 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 .

Theyer · « **Reply #91 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.

Jeff G · « **Reply #92 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 .

Theyer · « **Reply #93 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 .

wolfter · « **Reply #94 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

mitch777 · « **Reply #95 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!

Theyer · « **Reply #96 on:** June 04, 2014, 05:49:41 pm »

Quote from: 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

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 .

Jeff G · « **Reply #97 on:** June 04, 2014, 06:00:59 pm »

Quote from: Theyer on June 04, 2014, 05:49:41 pm

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

I had to read it twice myself LOL .

Theyer · « **Reply #98 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

Jeff G · « **Reply #99 on:** June 05, 2014, 02:30:06 pm »

Quote from: 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

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 .

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Author Topic: er lets call it convelesing (Read 41854 times)