just posting for some connection with the human race!

[wishforchange]

I haven't left home since Wednesday with my period.  After being kept abnormally awake with kidney pain - finally settling.  Slept all yesterday and all today.  Legs packed up on me big time, and eyes.  Barely able to stand or walk or see.  Need to get moving again.  Only have about half the day with full pain relief and the rest is just me curled up in my broken bed trying to take my mind off it all.  Not much of a life.  I need an adjustment in my pain medication and to try to go out tomorrow, legs will only get worse while I'm not mobilizing.

I've broken so many things in the flat.  And have no money to replace them.  Need to get a new washing machine and haven't got the strength to get to the laundrette.  I almost feel I could do with some home help right now, just to clean up, do my laundry etc.  Need to spend thousands on essential items, washing machine, new bed, new printer, replacing broken items around the place, even maybe a television.  Want to go back to my drama group but have no money.  But it is a bit of normality for me.  Want to joing a gym and go swimming.  

Letters from opticial consutant declaring my eye problems to be neurologcial.  How does he know?  I'm glad I pushed for another appointment, untested assumptions are not my thing.  Sent long email to gp, polite one if desparate.  What happened to my thread where I asked about sending it last?  Disappeared...

Got letter from uro-neurologist.  My condition is neurological but is not caused by nerve damage apparently.  What?  Does ANYBODY know what they are talking about?

Have reached the top of the list to see the neurosurgeon, need to just arrange the appointment now.  Even being on his list is bad news, but then he may take one look at me and dismiss me.  Kind of hope he identifies the problem and says I just have to snap my heels together three times (oops fell over), well try, and will be back to normal in the blink of an eye, when I can unglue them enough to blink.  I've spent half the week asleep so still thinking in fairytales.

Horrible, horrible nightmares all the time I sleep.  All my fears and problems symbolized and exaggerated.  Horrible.

I need a holiday.

[wishforchange]

Thanks Kathy, for someone who's reflex reaction to any proposed treatment is "No!", as I always think everything will make things worse, I am actually going to give this shot a try.  Considering my legs are a mess anyway, seems as good a place as any to suck it and see, and if it makes things worse just won't do it again.

Quix I don't think you have to pay tax as a statue, although your sister may need to get you seperately insured, or check the terms and conditions regarding accidental damage etc.  

I think the indoor reclining sport will have many competitors, with and without disabilities, and you may have to train a lot harder to make it to the UK in 2012.  I'm thinking of going for the Indoor Inappropriate Communication medal, for the longest sentence without pausing for breath whilst screaming down the phone event.  I need to give up those ocassional cigarettes though.

After sending my gp an email I scrolled around for all the good advice I took regarding the previous letter I was about to send to my doctor.  The post was something about asking for calming vibes and everyone was telling me not to send the letter.  It was a different thread to my 'crazed junkie' one, that you kindly posted the link to above.

But it has disappeared!  Checked and double checked all my posts.  I remember you also responded and told me how you held back on a letter once you wanted to send to your doctor.  It was because of all your posts I didn't send my letter, even after Kathy put in so much effort to help me with it.  It was an angry confrontational letter, and would have got me nowhere.  

After I sent this new email I felt a strong urge to re-read the thread - should have looked for it before I sent my missive preferably.  But I can't find it.  Really, it has gone.  Some bits of advice here and there I treasure and this was a thread which stopped me from doing something stupid, and it would have been nice to re-read the responses.

But now I have sent this email, not such an angry one, but maybe not in my best interests either.

  I think I am fighting the ghost of the old GP, who knows I am pursuing major complaints about him.  Getting this current doctor to admit to having been contacted by him will not happen, so I have just asked if there is something he wants to talk with me about, as he has changed - along with begging for my increase in meds.  There is no point confronting him with my evidence, he may even take fright at the email.  He is an insecure man.

If he cuts me off I have no-one.  And I actually cannot move without this medication.  If he is now under the impression I am taking it recreationally then how can he justify prescribing it to me to date?  And he has the diagnoses.  With a top neurologist telling him that he recommends no change in my regime etc.  I have heaps of evidence of very painful conditions, but if the word of a disgruntled old doctor can wipe out the truth in the eyes of the PCT, they can sway a young doctor.  This old GP knows how to secure a threat to his reputation and is not stupid.  I wish life hadn't thrown him at me.

I don't want to be the sacrifice that brings this man to justice.  He will be exposed for who he is, and I can't hide from what he is trying to do to me.  I suspect, and hope, that despite all, the PCT are investigating him.  I've given them enough reason, and they have to cover their own backs too.  

The world will be a little safer place once he stops practicing.

Anyway, back to sanity, any idea what happened to the thread?

Oh and Kathy, have fun in paradise!  Still thinking of sloping out in my pyjamas to join you there.  You have an amazing friend treating you to all this!  Enjoy.

[Quixotic1]

None of your threads have been deleted.  Is this the thread where you talked about the letter to your GP?

http://www.medhelp.org/posts/show/613150?post_id=post_3349726

If not, you can go to your profile, and read through all of the posts you have written (ever) and find it.  they are listed most recent to earliest.  You can find it that way.

Quix

[Quixotic1]

Hi, Wish, I understand needing to contact the outside world.  My world is almost never leaving the house except for the occasional doctor's visit.  My sister lives with me and she's great company, but we are very different people.  So, my social life is here on the forum.

I am in another hypersomnia phase right now.  It makes me very boring company, sleeping 15 or more hours a day.  I have come off two of my sedative meds, so my head symptoms are greater, but I am still sleeping too much.  The Olympics motivated me to work on my MS Olympics event - Endurance Indoor Reclining.  I have to defend my world championship.  If I slow down any more they will have to reclassify me as a statue and I'm sure that will have tax consequences.

I'm sorry your meds do not handle your pain.  I hope your new GP is still working "with" you on that issue and is not pulling away.  

Dreadlocks, eh?  I'm considering shaving my head and painting it purple.

Take care, you are not alone.  They are out there!  (reference to a US TV series about FBI investigator who believes in an alien presnece, lol).

Take care, Quix

[Fluffysmom]

Hey, I missed commenting on the steroid injection in your inflamed thigh muscle.  I have had so many injections, I sometimes feel like a pincushion.  

The injection shouldn't be too painful; they will most likely shoot you up first with some numbing medication, like lidocaine or marcaine.  That can sting quite a bit, but the relief you feel after is worth it, and the injection of steroid will feel like pressure, maybe some pinching.  You should have at least a few hours relief from the numbing meds, then you may experience some soreness as that wears off, and before the steroids kick in.

Some people feel relief from the steroids right away.  I haven't been that lucky.  It should relieve the inflammation.  What is causing the inflammation? I hope it works well, and quickly.

Kathy

[wishforchange]

Hi there,

Haven't got to know you so welcome.

I am the forum's miserable old g i t so thanks for answering.  My hobbies include moaning, writing letters of complaint, saying things I regret and not having friends :)

But they seem to put up with me here.

Am on the grumpiest day of my cycle, coming to its end but still in too much pain to go out, so bored and exhausted all in one.  Live alone so housework piling up with no-one else to do it and I've resorted to chips and chocolate every day for my diet.  Then I wonder why I don't feel so good...

Will try to cheer up and find out more about you, had a brief look at your profile.  Still haven't done mine.  There are still people here who think I'm a man!  

Going to go wild now and comb my hair.  Will have dreadlocks soon if I don't and am too old to look good with them.  Then fall unconscious for another few hours and hopefully ease myself back into reality tomorrow.

Sent an email to my doctor saying things are bad.  I already take handfulls of morphine and other industrial strength drugs almost on the hour, am terrified he will stop my pain meds.  Cannot move without rattling with pills.  He already called me an addict, entirely uncalled for, still haven't forgiven him.  But then he holds the key to the magic cupboard or movement and relief.

Keep asking people but no-one seems to know, maybe you do.  Having a steroid injection in a month or so for an inflamed thigh muscle.  Know anything about it?  Really is not the greatest of my problems but if it helps one bit that hurts will be worth it.

Just tidying up my journal pages and changing privacy settings then have a few invites for new friends to answer, currently not responding until I've sorted my journals out a bit.

You'll like this forum and there are some very knowledgeable and supportive people here.  And there's me.  Don't be scared away please.  

Thanks for getting back to me

wish

[Cre8_it]

Hi, I'm sorry to hear that you are having such a hard time of it.  I feel ok today but just got over the same sorta thing.  I was at home for days on end, usually in bed, legs causing problems etc. Finally got up the energy (showering not fun) on friday to get to the dr to get some pills for pain.  I hope that you are feeling better soon.  I will be thinking about you.

Zeta