timeline for those with no sense of time

[wishforchange]

If anyone's interested, I'm going to list my symptoms past and present on my journal, access only at present to those on current 'friends' list.  Although you are all my friend here.  

Never been so organized as to remember dates or onset etc. but if I do get the SLE clinic referral sorted or other referrals would appreciate your input.

Contacted surgery today and was full of herbal tranquilizer induced calmness.  Benzos have never calmed me down.  I think I'm one of the rare people who only respond to them as a muscle relaxant.  Was only speaking to the receptionist thought.  How I'll be with Dr. Wonder I don't know.  

Thanks for anyone who comments on my journal, will do it now and add stuff as I think of it.

Wish

[wishforchange]

Hi Farrah,

Thanks for responding.  

Had no comments on my journal.  May leave it on for a week or so then delete it.  It is personal so don't want it there forever!

Didn't know you crashed your car.  Were you hurt?

Speaking to my GP tomorrow.  It was an appointment but I'm feeling so rubbish asked if he could phone me instead.  Maybe right now better not to be looking him in the eye.  Too upset.

This consultant I saw the other day has sent the referral to the specialist lupus unit in motion.  They, or my gp, or anyone, don't know a fraction of the symptoms I've shared here.  If the unit accepts the referral I will maybe copy out the journal entry and show it to them (without my username of course, I'm not that dumb).  I want them to ELIMINATE this as a diagnosis, but better if it is the case to know.  Believe me, I want lupus as much as the people here want MS, we none of us choose our demons.

Why do I get the feeling one day your name will appear with a little purple heart by it?  Hey it's not my decision, just you're contributing a lot.  I think my name may appear with a skull and crossbones.

Having a bad day for a change.  Couldn't get off the toilet for two hours in spasm, and again took my whole day's worth of valium in one go.  Anyone who has had bladder spasms or is peeing blood will understand the desperation to do anything to make it stop.  Just getting up and walking the few steps from the bathroom to the lounge where my pills were was a mammoth effort.  I read somewhere that bladder pain can be as severe as that of advanced cancer.  I can believe it somehow.  It is pure torture.

You have a great approach to medications, going for the natural approach.  You'll win with this attitude.  When I can next get out and to a health shop will look out for melatonin, didn't know they made it as a supplement.  Am booked for a sleep study sometime, to establish what this paralysis is about. It's common in a lot of people but is so longlasting with me I can me sometimes twenty minutes awake and enitrely paralyzed.  It get worse with time. Do fall asleep a lot in the day even when I am sleeping good hours.  Hope they don't tell me it's narcolepsy.

Discovered valerian.  Great stuff.  Calmed me down, sent me to sleep (with no paralysis!).  Bought the day and night time versions.  After over a decade am changing my brand of herbal tranquilizer.  My current one is great but not as strong as the valerian one.  I must be the only person who can take horse strength benzos and still be angry afterwards.  They do nothing for my mood, maybe even worsen it, if that is possible.

Looked at my list of symptoms again and they are simple really.  Not by any means a typical picture of MS, although I am creeping into that territory in recent months.  The eye and hand problems are the most 'neurological', along with the tingling etc.  Some people, like yourself, get hit hard from a young age with extreme problems.  Others like me have a lifetime of slowly increasing ones, which reach thresholds where seemingly suddenly another faculty is lost.  Writing it all down made me realise this, that many of my problems aren't new, just extensions of old ones.

If you or anyone does comment, I know I have posted here but can you comment on my journal page please?  Like I say, I want to share it with you all but only for a while, so best to keep it to the private pages.  But it may be that no-one has anything to say, or hasn't time to read it or respond.  So many of you here are coping with more than I have.  

Thanks for letting me lean on you, without my knocking you over!  

When can we start the Spanish lessons?  Only kidding.

Wish

[Farrahlicious]

Honey, we're ALWAYS interested in how you're doing and what you have been through.
I will give you the space you have been needing, but you know i'm always around (hey, i crashed the car, i live on the top of a hill and we have no public transportation that will get where i live, so what's to do? always online!)
I am very interested about your medical history and will carefully read your journal. I have only been dx for a few months, and i'm not very familiar with most medication, but i am very interested to know how your symptoms have developed.
I'm so glad you're back. Hey, Bach Flowers have a "stress relief" spray. Tastes a little bitter/honey-ish but it works!
sending you love and hugs,
xoxox
Farrah