Poppy - The Road to Recovery!

[member_37074]

hi

i am ok but not sleeping well.

Saw my gp yesterday and she said the discharge letter was not worth the paper it was written on. one of the reasons put down was a post partum haemorrage, i said that was 18 years ago how can that be...........she said these days these documents are crap written by over stretched junior doctors! My doctor doesn't mince here words.

she gave me some orlistat (2x strength Alli) because my bmi is nearly 38 now i can hardly begin to accept i am so fat it always used to be 22, and i will be monitored. She was bothered about my tachycardia which was not mentioned and i had 3 ECGs in hosp because sometimes my heart goes up to 140.

She told me to look things up on the pit foundation website particularly how to give the emergency injection and use the prn extra hydro tablets. her son is a GP abroad and she is going to try and get me an epipen, she was a bit horrified at the idea of my neighbour having a go with the syringe and needle in my upper thigh she said it coulld catch the sciatic nerve and cause problems forever

isla my cpn has breezed back with great plans for me to go here there and everywhere on the bus to various groups some an hour away, i don;t think she realises how bad i have been. I am going to be strong and reject her groups for a fortnight at least.

got my appointment letter for Dr Howell at Preston it came yesterday, 18th and it was for the 18th in the morning we didn't even get the letter til the afternoon. i was livid.

my mum rang and they were going to cancel the referral but she managed to persuade them to give me 1 dec at least that gives me time to try the lancaster regime and hopefullly things will have improved byh then.

so tired try to sleep again now

love Poppyx

[Sandy]

Hey Poppy,
well done on getting the appt in Preston rebooked, that wd have been totally unfair if it was cancelled because of the post. And yr GP sounds like an ally, sorting the epipen - I use a genotropin injection (for GH) pen which is a doddle to use once you get the hang of it.
I guess yr cpn doesn't know what you've been thro over the last few weeks? If not, please tell her - maybe she will back down a little, knowing the whole story. We don't want her to think that you're being awkward. Perhaps you could even show her our exchanges, they track your story pretty well, in human & medical words.
Hope you managed to get some sleep last night
Sx

[Sandy]

Hi Poppy,
How are you?
What's your latest news?
Hope things are improving with these meds, even a little is a step in the right direction
Sx

[Sandy]

Hello Poppy, are you there?????
Let me know please!
Love & hugs
Sx

[member_37074]

hi sandy

I realise i have forgotten to say what they think my diagnosis is primary and secondary hypoadrenalism and hypothyroidism (Hashimotos) also hypothalmus failure, but he said it is all pituitary related and the treatment is the same-hydrocortisone and levothyroxine.

i am feeling SO sick with all the medication i am on some anti sickness pills that are at last working i am managing to keep food and tablets down today, but they make me so sleepy, but they do work. so i have to choose between feeling and being sick and the panic from knowing what happens if i don't keep hydrocortisone down, or like today not even getting dressed just sleeping through every tv programme i wanted to watch.

my periods are affected too hardly any blood loss but trailing on for nearly 2 weeks.

my carers are angels and emotionally and physically i could not keep going without them. i am so huge i still feel acute embarassment about seeing anyone and am not going out.

my social worker came to sort out the direct payments on thursday the care team want me to move to supported disabled accomodation to a flat with disabled access and wet room. I really don't want to move but they say i can't hide myself away at 45 for the rest of my life. i would quite happily sleep all day as long as someone made me the occasional cuppa i can't hold the kettle.

my flat is on the edge of kendal with fabulous views front and back but is first floor and i struggle with the stairs, i cannot shower alone and i have no company.

To be honest if they decide not to let me sleep all day if i wish iwould rather die. Just heard from my ex that my son is not coming for his fortnightly visit tomorrow, that does not help. the only way i can get by is by sleeping the time away. I don't want the hassle of moving especially if there is no view. There is no way i am moving somewhere to a community of mentally ill people that just makes me worse.

it is going ok with the orlistat i won't weigh until Tuesday though, no bad side effects so my diet must be low fat.

have a good weekend

love Jane

[member_37074]

hi sandy

hope you are ok . i realise weekends are your busiest times with family life.

i hate them it is lonely. my friend did pop in from 11-12 and we had a ten min walk all i could do with crutches, then i was so tired i asked her to go, i know her well enough not to offend her.

had nice card and booklets from my nearest support group which is preston.

do you remember the first carer i had that turned up drunk once? so he went home and crashed his moped i have no contact with him but he got 16 month ban and 250 pound fine it was in the local paper, i seem to attract alcoholics.

night night, hydrotherapy tomorrow that will make me sleep.

love poppy xx

[Sandy]

Hiya Poppy, sorry for the delay - you're right, it was busy with the family. I did too much on saturday so was pretty wiped out on sunday - and have done the same today as it's the 1st day of the half term hols here, so will pay the price tomorrow But happily the kids are at a friends house for a few hours so that'll give me some peace, at least that's the plan...
How was hydro? I'm pleased you're still able to go, it seems to be a good therapy for you.
So sorry I've not got any brain to write much more, but I'm thnking all sorts of good things for you, am pleased you've a real diagnosis & that people are thinking about your whole care package. Please don't become locked in your 1st floor flat just cos of the views, I know it's a tough decision but maybe it's right to move & get somewhere you can more easily get out of? Your friends are obviously willing to visit you, think how much more you'll be able to experience when you're able to go yourself - having said that, as you're going to get much,much better in the next few months, perhaps it's better to keep the current flat, avoid the hassle of the move, and just push yourself to get out more to prove to everyone that you can! Hmmmm, I think I'd stay, now I think about it.... I bet you do too, it sounds like a lovely place, as long as you can get down those stairs
My son's gone to see Johnny English reborn today, with my parents - the teens & hubby went on Sat - they say it's an excellent film, v funny, so if you get chance to go out, it comes highly recommended! (Of course I'm not going, too much hassle, noone to take me.... do as I say not as I do hey )
Take care & thanks for your patience this w'end,

Sxx

[pituitary]

hey im fairly new to this forum and see that you two have become rather good friends on here i just wanted to know if you know anyone else with any pituitary problems thats about 19 as i feel alone as its mainly older people on here

[Sandy]

Hi Pituitary, nice to hear from you!
I think there's a couple of other posts under the Younger People section that may be interesting threads for you - I've just looked and see that ones from you so you obvs have seen it already.... are you in touch with Jemima?
Must admit it's wierd to be classed as an 'older person' - I may be 44 but I've still not decided what I'm goign to do when I grow up!
I bet lots of us have things in common - symptoms, treatments, problems & successes too - so pls don't be put off by our ages

How are you today Poppy? How was hydro on sunday?

It's half term here at the mo so today's going to be challenging - going to have 3 4-yr old girls playing, I hope it's sunny so they can go and burn off some energy outside. I'm goign to turn a blind eye to any mess & tidy up later. My 8yr old son has gone to his fathers for 3 days, I hate it but it does give some respite, even tho he's a great kid

Apart from that, I feel flippin awful today, exhausted and achey. working my way thro a choice of painkillers at the mo, didn't like cocodamol cos of the poss addiction problems, so an on naproxisomething, one of the NSAIDs, but it's not really making a huge difference yet.

Hope its sunny for you both today, ideally inside as well as outside!
Love
Sx

[member_37074]

Hi Pituitary and Sandy

Please don't feel excluded because i have made a friendship with Sandy you are more than welcome to join in as is anyone else we are not excluding anyone.

I am sorry but i am 45 , but do have a phone buddy on another forum who is 19 and i have teenage sons too. but i can see how you would like to chat with someone nearer your own age.
My gp told me there is probably only about 800 people in the country who have exactly what i've got so i don't hold out much hope of finding someone with exactly the same diagnosis.

I have just had to fork out £25 for another medic alert bracelet i have had a few now but my diagnosis kept changing. my gp insists i have one because of my 2 adrenal crisis in a few months. and it may well happen that i will need the emergency injection.

My concentration and memory is still shockingly bad, it is short term that is the problem.

I enjoyed hydrotherapy it is lovely to move more freely in the warm water. My endocrinologist says the pain in the muscles and the joints is not part of it but if you look up addisons it is listed as a symptom. my gp is convinced or she would not be giving me liquid morphine and codeine.

naproxen sandy, take care always eat with it it gave me shocking indigestion and heartburn and i had to take a tablet to protect my stomach lining. i have been taken off it now in favour of pregabalin.

having a bit of hassle with my main carer, she is 18 and a strong personality and i am not good at standing up to her demands, she lets us know at the last minute she can't do a shift and it stresses me enormously. mum and dad who administer my direct payments have been to have a firm word, she also asks for money early and we have to pay her monthly according to the rules by cheque she doesn't like that either.

but on the other hand she was great when i fell out of bed in the night and hospital visiting etc so i would not sack her she just needs to mature a little.

I have decided while i am housebound by my stairs and spending time watching tv and on my pc, my role could be to answer other s if i feel i can, on this and on the depression website i am a member of, might do me good to feel a tiny bit useful.

Can't remember if i have answered all questions or not sorry.

love poppy x