POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: Theyer on October 13, 2011, 08:37:42 am
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O n Thursday I reached 54,Had a very good meal and got in underage to reduce price Monday for the over 60,s to see The Dept.
The preceding 6 days where as follows.
After waiting six months for appoint with auto immune clinic to see wether my arthritis is rheumatoid or just plain crumbly I arrive early with the list off my drugs and my GP name and address. Issued in to 30 something male cubby hole he kicks off by saying this is your second appointment yes ?--so I know he has not read my notes - I explain that !st appointment cancelled due to being in hos this is its replacement. He replies well I cannot possibly give a first appointment now we are too busy and are only seeing follow up Patients. By the time he has finished his spiel I know I am in the company off Doctor on the verge off a nervous breakdown.
In the past my venerability and fear has resulted in the behaviour off a grade one arsehole and anger management has had to be studied. Problem is I cannot calmly deal with these cock ups without physco-mikoe emerging. So fixing the poor guy with a death stare I recount the history off my wait add that I have travelled from the Orkney,s and ending with we either have something that moves this investigation forward or he summons the hospital manager NOW and I continue the afternoon filling out an official complaint.
What followed was half an hour off rapid fire questions from him and me keeping to his request to be brief, 4 x-rays off hands and feet from Sloane ranger radiologist darlings discussing Crispins fab weekend house Parties and is it true that Harry would turn up.
Back to Doc who agrees that I don,t need a bone density scan as I had one in March and that he would send in the post the paper work for 2 blood test to be had at my clinic.I put out my hand to shake his he flinches his eyes locked on my broken front molar.
After a very sad exhausting weekend visiting my Mother in her Care home I get back on Sunday to a envelope containing six blood test and another envelope containing a leaflet from nuclear medicine with an appointment for the 24 Oct for the not needed bone density scan.
Monday --clinic All off the 3 docs i work with are on Holiday.
Trusted nurse said testes where for auto immune marker and cancer markers.
Meanwhile Mark is taking my beloved dog and her rapidly growing lumps to the vet and that's really all I am interested in.
So I am off to hos now to pick now fentalyn patches,away to south coast for the weekend ,Millie the Dog operated on next Thursday.My return to Orkney put off to the new year due to vet fees,
I do own a new 1955 Wardrope chest off drawers won on eBay on the sunday before I knew off Millies needs.They are beautifully portioned light oak teak insides, some veneer when it was still thick enough to be seen and dove tail joints a plenty. But Millie the dog and my Mama beats them hands down in the beauty stakes.
Thanks for reading , getting it down does relax or exhaust.
love mhtv
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It's just not right that one has to have a tantrum to get anything done...but...
I concur that sometimes, it just has to be...
Happy belated Birthday,
..wishes that all goes well with Millie.
Ron
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Theyer congrats on making it to the big ole 54 ;D you know what they say? us old people over 50 are invisible anyway :D that's why we have to scream & holler loud enough to get what we want ;D
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Hey Theyer,
Sorry you had to put the doctor in his place, but sometimes you must.
Happy 54! Its a great year!
HUGS,
Mark
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Happy belated birthday, Theyer! :-* Sorry you're going through so much health wise, and that the doctor was such an ass. I hope things get better for your bones, and your poor doggy also. :-*
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Theyer,
Sometimes those heathens need a rough edge of your tongue to set them straight!
Happy Belated Birthday!
:D
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Thanks everyone, I did not raise my voice that's the thing with psycho mikoe hes very quite and exact , but it is mean to treat anyone that way.There again it is mean to treat patients the way his dept was going to treat me. What goes around ...
Anyway its 11pm I am sitting with a sore and dopey dog.The two lumps turned out to be 6 and she has lost three teeth with the cleaning. She is one sorry and confused dog. I have decided not to have the lumps analyzed as it will not make any difference to treatment and I cannot afford what she has had done anyway. I will base my decisions on her moods if she is happy,continent and can withstand vet treatment then she will get it, when any off that changes I will not prolong her life for my fear off the grief .
She will be 14 this Jan.I got her aged 16 weeks after I had received my first 6 month all clear after the first treatment for cancer. So Millie has been a part off my illness years, What allways amazed me when she was a young on the go typical terrier was how when I was ill her demands on me ceased. After 2 days off regular dog walking by another even asking for walks ceased. As she is cute and enjoys humans care it was never hard to find.However it evolved that the guy who lives in the flat above me slid into the role off millies second mate and a friend to me.
So back to the nursing. Love to you all.
michael/theyer
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She was there for you and you are there for her....
it's still hard though...
Ronnie
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All I can say is HUGS!
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Aw, that's heart touching, Theyer. What a beautiful relationship you have with Millie. Actually another of my friends has a dog named Millie also. Anyway, thank heavens she has you to take care of her. I just know you do an above average job. Good luck with her recovery, and I hope you have a lot more time with her. She sounds very content.
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Its 48 hours now that millie has been home.I think things are ok, I would be happier if she would drink more .I will be happier when I get more than one and half hours sleep with out being woken.
Thanks as aways for the replies
mhtv
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First off, Happy Belated Birthday!
I also wanted to say how sorry I am about Millie and I hope things are ok. Sounds like the doctor was a real jerk and I'm glad you stood your ground.
Hugs,
AA
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Happy Birthday.
And many more.
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How is Millie doing? Are you getting any sleep?
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Again thanks everybody.
Millie after 60 hours off causing profound but controllable anxiety is now very much back to her real self. She has always adjusted quickly to new rules whether when staying in differant houses or travelling .
But this was far more than she had in Jan, Mark said.
I had a day at the hospital yesterday ---see old pozs thread---- and have spent a lot off today sleeping and having bone ache, hopefully tomorrow will be less painful and more conscious for both off us .
Millie has her post op visit to the vet tomorrow, will report outcome.
love to all
Michael
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What happens at a post op at the vet?
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Checking the healing and deciding the stitches can come out wens next week . All very co-op on millies part until Anders the vet tried to see in her mouth,she continued to wag tail, being very friendly , but she would let him open her mouth After a quite awhile Anders growled OK you win millie.
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well really.
she had probably had enough and just wanted to go home and get some more of your undivided attention...
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My HIV Doc emailed me to say no indication off rheumatoid arthritis hooray appointment made with hematology 6 DEC for full report on bloods and scan.
Feel very relieved that I don't have to manage that particular horror, and am taking the attitude that if my next appointment is not until Dec then they have not found anything horrendously nasty.
However it took me 3 days to recover from Mondays exertions, and that is why all these tests are going on .
Pleased but no answer other than this is what is.
michael
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I got home last night after a great day to receive phone call from sister saying Mothers health has taken sudden turn for the worst with a chest infection. Brother with her.
Now I am anxiously waiting for there calls,as arranged last night.
I am a bit off a mess.
m
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Hi
I"m sorry your Mum is not doing too well. You need to take care of yourself. Just let her know you love her.
I lost my Mum a couple of years ago, so I know how hard it is to "let go".
Joel
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Thanks Joel,
It has not been a easy week,my Mother is responding to steroids and antibiotics, but is ill,and anxious. She has 3 offspring ,in-law off spring ,Grandchildren, great-Grandchildren we work well most off the time and when she is ill its a rare day when one off us is not there. Where we are really lucky is that her nursing home is caring, hard working ,good at communicating, oh I am so grateful for that.
I fortunately have pain Doc tomorrow where I will get antibiotics for the wee infection that's kicked in, not what I need at the moment as if there is ever a moment that calls for a wee infection. Its the reason why the top off my head has a cut on it.I fell asleep on the kitchen chair 4 am fell out off it, head smashed ceramic bowl ,odd experience.
Early night now.
mhtv
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Michael,
Glad to hear that your mother is responding to the treatment.
I have smacked my forehead on the keyboard many a night...it is an odd feeling when you are suddenly jerked awake with a smack on the head...
Get some sleep...lie down with your favorite music and think of nothing for awhile. Sounds like there is a great communication going with your family and the nursing home so you won't miss anything. Knowing that you and others are taking care of your selves will ease your mothers anxieties...mothers are just like that.
Ronnie
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Ronnie,
My first thought was ,as my view was the floor and the wall and there had been the sound off my head breaking the bowl was ---there's been a bomb, now I don,t have to wait any longer to experience being in a bomb blast-----
Ever since it happened I keep coming back to the fact that at some level I expect to be in or near a bomb blast at some point.
And I am wondering is that extra neurotic or do lots off big city dwellers have that, ever since I moved to London in the late 70,s its been the focus for attack.
Still it made a change from falling asleep on the toilet.
take care
mhtv
ed.spel
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..and you legs and butt fall asleep too?
..no thought on bombs...I do wonder some times about all the gas drilling going on in my area...
....I hope the bowl wasn't part of a set...I just hate breaking up a set of dishes....
Ronnie
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I'm so sorry to read about your mother especially on top of everything else you have going on.
Also have neither of you heard of a bed?!?! :D
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I'm so sorry to read about your mother especially on top of everything else you have going on.
Also have neither of you heard of a bed?!?! :D
Thanks Andy-----------
but in order not to wet them one has to leave them.
I am delighted that Ronnie has "shared" thanks Ronnie up until now I am the only person who falls asleep apon the toilet, apparently.
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How are your mother and Millie?
wow,I just realized that's two to think about at the same time...
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Millie the dog is fully recovered.
My Mother looks like she will get through this infection and hopefully enjoy her 90 birthday party on Christmas Eve.
As long as my Mother remains stable I will stay in London this week and concentrate on getting rid off a Urine infection that developed into a Kidney infection. The drug regime for it ends friday , I will be tested then and hopefully be given the all clear.
What I would like is one week somewhere with the dog Millie ,no illness, pile off books , good food NO phone.
take care
m
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Good news all round....
enjoy your reading time.
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Its been a differcult 7 days, My Mother admitted to Hospital .Travelling to see her hearing how her cancer is progressing.She has gotten over 3 weeks off wretchedness and will be returning to her Nursing Home with Oxygen which is new for her.
Its all so deeply sad, as it always is.
I am away to Suffolk coast with good friends and dog, for a few days at the moment I am dragging myself throe the motions a case off fake it till I can make it or not
Med for Kidney infection worked , they made me feel terrable
Oh I am a moaning Michael at the moment.
m
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I'm so sorry to hear about your mother. Hopefully, she will adjust to the oxygen quickly.
If you can't be a moaning Michael here then where can you? Being able to share all of life's bumps here is one of the reasons I love the LTS forum.
Hugs & Stuff,
AA
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Thanks Andy , she has adjusted well , she is happier now but is weakening.
I took a tumble on the Pavement today. My blood pressure had been playing up but this I think was just tripping on the curb.As I was falling I thought do every thing you can to avoid breakage,so I stumble,turn in mid air ,throw bag under me. tuck fingers in, arm across chest. Result very bruised finger and painful rib . Its remarkable how much flashes into your mind , including oh no I am NOT GOING BACK INTO A CAST. Weird.
Appointment with Rheumatology tomorrow.It was the 1st appointment with them that started this thread. Wonder if I will have the same doctor?
take care everyone mhtv
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Strapped up broken hand knuckle--hand clinic tomorrow..
Low
m
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So sorry you hurt your bones again Theyer. I"m sending big hugs and kisses to you. :-*
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I need them and thanks Betty.
In many ways I am still getting over breaking the ankle and puemonla in Jan , I was beginning to see an increase in energy.now the hand and rip has push my mood down ,I have slept a lot and am dragging myself along. Hand clinicc 2 hours time.
luv
m
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Good grief. Did you break your rib and hand?
Good thing you're life didn't flash before you and you were able to stay in the here and now by flashing on how to protect yourself in a fall.
Are you in a cast or a sling?
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Certainly hope you're doing well.
Wolfie
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Lordy Theyer, I hope you feel better.
Be careful.
Let us know what the hand specialist said.
HUGS,
Mark
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Sending hugs as well.
I had a similar experience when I slipped and fell in the bath tub. As I was airborn....literally...I tried to reposition myself so when I came down it do least damage. As it was I broke a rib and dislocated my shoulder.
But I survived.
I am guessing if you have a lot of problems with your bones breaking....that you have an osteoporosis issue. Kurt breaks toes and bones in his feet a lot.
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MANY THANKS ONE AND ALL
Left arm bandage around plaster mould up to elbow, no pain now. Hand knuckle chipped and fractured , ribs just bruised. PHYSIO appointment Monday.
Bear---yes I pictured how I wanted to land and twisted myself midair to do so --odd.
Long meeting with HIV doc. He is to again review all things low blood pressure. Good news no new nasty bone problems increased pain down to decreased fat on ball off foot and PN. The arthritis Doc has perscribed indiv gel inserts , Very good outcome.
Very tired at the moment but again many thanks
michael/theyer
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So the medical hunt for why I have increased bone pain and total exhaustion/low blood pressure contines. Add to this a year off urinary and defecating problems and it is tests ago-go . Lots have been ruled out, nasty arthritis, prostrate, the bit off the anal passage from prostrate down all fine. We move on to endoscopy/MRI.
And I would off started counselling today had i not over slept, collapsed due to low blood pressure when I tried to get up and felt that my bones where full off toxic sludge until 3 pm when after a bath, change off fentalyn patches and max dose off morphine I fell asleep to wake 2 hours later with less pain but still big drops in blood pressure. To have a day like today fits the pattern as its been a active week, but it was extreme. The problems I am having could be explained by autonomic neuropathy but all the other possabilities have to be ruled out.
Hopefully the foot insoles will help one route off pain and I must do a list off what I need to follow up. Days like this leave me feeling I am on the edge off not coping.
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Hey Theyer,
Sounds like a bumpier ride than usual. I hope they can pinpoint the cause of the problems.
Do keep coping as best you can.
HUGS,
Mark
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Hope you feel better, they simply have to find out what the problem is, I cannot even walk bare-footed as I have NO fat pad on the bottom of my feet, and the rest of me is mostly lean & thin, I don't have hardly any body fat, I have to put a pillow between my legs when i go to sleep, as my knees don't have any fat around them. it's all bones, I've had this problem for the last 10 yrs. ::)
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Dearest Ones.
Thanks be to the Gods Christmas is over. When I got back to London The time with family felt like a psycho dynamic encounter group , I luxuriated in being alone with my dog before the NYE cold kicked in. The last time I was well for NYE i was 29. I have no voice but am at least awake, very well locked after by friends over NYE,s , too tired to think in terms off a year ahead , I do know I will continue in this forum it was one off the delights off 2011.
Love to you all
michael/theyer
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Michael, if you made it to midnight on New Year's Eve, you're doing better than I am. A happy one to you, and I'm really happy you participate here, I always look forward anticipating what you have to say.
Betty
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Oh, I was up to 5 AM that night!~ ;) Twas not a party however, just timely insomnia. :-\
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I had a nice dinner with friends, we did a toast at midnight and then we all went home.
I didn't have to drive, so I had several glasses of Merlot.
I fell asleep in my recliner and awoke to find the sun coming up and the TV still on.
Happy New Year and, Michael, I am glad you plan to stick around. I enjoy hearing from you.
HUGS,
Mark
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Thank you one and all
Quick update on medical news.
Cold cleared up enough to give me a voice so I was able to attend the assessment interview with counsellor. It was successful no trouble talking to her, she clearly was confident and had good listening skills. Was offered 12 sessions which I was able to negotiated to 12 attended sessions In the past when I have used this service losing a session due to illness seemed wrong to me, so all in all very pleased with outcome.
Did some shopping afterwards, but exhaustion kicked in , so needed a Taxi to get home slept from 9pm to 3am 5am to 10am. This cold is hanging in there,and mucus is dark therefore likely infected, have hospital appointments Monday will get it looked at if its still a problem.
Have a good weekend everybody
M/T
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Chest infection, Pee infection anti bios make me vomit , I hate London in January its one big petri dish. Does anybody need a caretaker for a property somewhere hot ?
I can just imagine what a relieve it would be to say have your empty villa occupied.
Plus I am full off sad stories off kind neighbours in meditarianian Towns who did not hear those pesky brutal burglars even though it was just across the Hall.{must have lift if above 3rd floor } Very good with vets and pets.
Time for yet more pills.
Theyer
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I'm sorry you're going through yet more medical maladies. It hasn't been a good year yet, but hopefully will get better. Thinking of you. :-*
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Hope you're doing better by now Theyer -- thinking of you!
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Many thanks , and I am feeling better, the antibiotic fog is gone taking the infections with them , now I have to rebook the ultra sound and the other thing that I could look up and therefore appear slightly more together .
If both off of these are negative I suppose I get the dia off Autonomic Neuropathy.
Next week I have the first off 12 counselling sessions , Then as long as nothing medically huge that responds to treatment appears I am off to Orkney. I should say I hope to be off to Orkney.
lots of love LTS
mhtv
mod. coz i left word out.
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Have finally received a definite diagnosis from all the tests, Type 2 diabetes not bad for someone who weighs 140 lbs. I meet with the dietitian next week and will have to give up smoking.
Counselling has started , good timing , the tests I missed are on hold .
If my energy levels improve all the changes will be worth it and I am sure mood and things will improve.
Cold blue sky day today so a stroll will happen.
All the best everyone
michael
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Well, I live in the great Southwest of the U.S., but we're expecting snow today, so I don't think that is what you wanted.
I hope you are back in the pink soon.
HUGS,
Mark
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I hope you are feeling better Michael ... I would imagine your weather there is similar to mine this time of year or you would be welcome to my Villa ( that's the spare bedroom in Alabama talk ) and the company of your American mirror . Big Hug ! , Jeff .
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Big HUGS for ABQ USA Micheal
I'm thinking of you ;)
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Thank you for the warm fuzzy feeling that these messages off support and care give me.
One off the dynamics off being ill so long and so often is that friends and family who stay around become I think somewhat punch drunk with regularly receiving news , the forum helps me in that ,it gives me keep on going support and it comes from peers.
I also am conscious with family/friends off not always talking hospital , so I understand and I know now they will be all ways be there however bad it gets as I know with Forum friends also.
Now I have replied to others on the forum completed brunch/drugs I will begin to layer up and walk the dog. It is proper cold today with a unforgiving North East wind. The weather news for UK is snow and our Northern and central European cousins are having a truly dreadfull time. Hundreds reported dead in Ukraine records broken in Poland ditto Baltic states we in the UK are just having the very edge off what they are going through.
lots off love to all off you
michael
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One off the dynamics off being ill so long and so often is that friends and family who stay around become I think somewhat punch drunk with regularly receiving news , the forum helps me in that ,it gives me keep on going support and it comes from peers./quote]
This has been my experience also . I have family and friends that look as if they go catatonic if I mention being sick so I do my kvetching here . My mom is the worst , when I was going through chemo and she would call me and if I mentioned not feeling well she would exclaim " well , whats wrong with you ? " . I lost my cool once and told her its probably nothing , just a tinge of Aids and cancer . ;D .
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Yes...its very scary to parents to think of their baby dying from teh AIDS. A little forgiveness goes a long way.
Cant paint them all the same, of course. My parents were educated and worked in the medical field. I had it pretty good. But now they are dead and I am all alone with my diagnosis. I think ultimately we are alone with our diagnosis and its up to each of us to be survivors.
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Well I finally received a positive diagnosis type 2 diabetes. This will be covered by GP practice. It answers the getting up to pee in the night and could answer the exhaustion periods.
So far the dietry changes are easy as its food I eat anyway.I am being more disciplined about food, seeing the dietitian.Had only one meeting with the GP practice {there are 8 doctors +nurse support} re the diabetes.Doc ordered up more blood tests and hurried me out which was OK by me as I was not enjoying his company.However kept it sweet.
have had this news 3 weeks and trying since then to compose meals that meet the guidelines.Have notice a clear reduction in peeing at night.Too early for energy levels.
This week was busy for me, early mornings, lots off travel visit to Mothers.And the usual kicked in Thurs & Fri I could not stay awake for longer than 2 hours,Now I have insomnia its 5am and zopiclone and diazipan just not working.
Hopefully though energy levels will increase as the function off the counselling has so far been to look at conserving energy when I have it and not going hell for leather till I drop again.It also has resulted in a new vacuum cleaner as my old one needed a muscle mary to use.Its not often the outcome off counselling is a new vacuum cleaner.
Coming week I have dietitian , bloods for GP Doc, and consultation with HIV doc.Will discuss with HIV Doc my huge desire to get off the medical merry go round and get to Orkney My plan is to leave come what may mid April for how long will depend on our discussion.
So wish me luck friends
love to all
Michael
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I know how you feel. I've been trying to get a "holiday" vacation for 2 years and have finally scheduled a trip to Ft Lauderdale Fla.
Good luck. I hope you make it to your beloved Orkney.
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Good luck getting to Orkney, Michael. And good luck with the diabetes. I've been diagnosed with that for at least 12 years and still have a hard time with eating the right food.
Hope you feel better very, very soon! :-*
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Its been quite for me and the forum as my dog Millie died 2 weeks or so ago and I guess its fair to say I am fucked . I am afraid that its bought up so much , as Millie in dog terms had a royal life and died off old age , I am clear on that, however I am a mess at the moment. Got an appointment with a psychiatrist as I want drugs I feel very stuck .
Received letter re diabetes tests asking me to make app 2 weeks ago still have not got round to it, do know that my current strategy v.big bag off skunk is not the answer.Long term.
hope next installment is differant.
m
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Oh
Sorry to hear about Millie.
Chin up old man.
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Oh, I am so sorry to read about your dog Millie. One of my best friends has a 3-legged dog named Millie.
It's so hard to lose a confidant and friend. I wish was there, Theyer, I would give you a big hug. {{HUG}} :'(
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Michael,
I am sorry to hear about Millie. I know it can be a blow.
I, also, would give you a big hug.
HUGS,
Mark
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I'm sorry for the loss of Millie Michael . Big Hug for you .
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The loss of a pet is more significant than most people think or admit. Heck, I had my hound dog named Dreamer for 14 years, outlasting the relationships with my 2 exes. She was at my side through thick and thin, as I am sure Millie was for you. I'm so sorry to hear that Millie has passed away.
Hugs,
Henry
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Many thanks everyone,
michael