1st anniversary

[DEE]

today 16th may
first anniversay since dxt and started mxt then cxt sat here with thumping headche stuffy nose joint pains AND chest hurts from blood clots !!!!
finding hard to take own advice today and think only of present
went to wg clinic thursday said bloods etc showing wg less active but by symptoms that im fighting infection again looking into
to stay on 150mg cxt and 25mg preds and see them in four weeks if not before if things dont improve
taking warfarin alittle better as i dont feel so sick after it now
not sure what else i can do i take meds on time for ever resting always asleep !! stay away from people in large groups
friends and family stay away when they have colds etc
i watch what i eat other than triple choc muffins although they had sold out when i went for them after clinic thursday
fed up of reading and daytime tv and anything physical at the moment means another sleep :)
sorry for moaning BARON been brilliant but even he must get fed up and i thought if i write it diwn it will get it out of my head if you see what i mean
ok feeling alittle better going for a shower will lift chin up
today is another day thanks for listening DEEx

[Col 23]

I know where your at Dee, very frustrating. Sleep is good, gives the body a chance to heal. Remember one day at a time. Sorry they were sold out of choc muffins that wouldve been enough to tip me over the edge on my bad days. Never got my lemon cheese cake today but will be on the hunt for it tomorrow, oh yeah and I want real cream with it. Thinking of you. Cheers Col 23

[elephant]

Hey Dee, hope you had your shower and sorry your not feeling well. Hoping you get your muffins soon. Thinking about you. Dee is this the first time you had chest pain from blood clots?

[Sangye]

Aww Dee, I wish you could have felt much better on your Wegs anniversary. I know how it is. At my first I could barely stand long enough to brush my teeth, at my second I was in scream-out-loud pain from a huge leg ulcer, at my third I was in the hospital with hemorrhaging lungs (just like dx). I'm hoping for a decent 4th!

I'm worried about your chest pain. That's not typical for clots this many weeks later. I think you need to get to the ER today and have it checked-- could be new clots, infection or Wegs.

Do you take your warfarin at bedtime? I take it then and don't notice anything.

[DEE]

hi Elephant -Sangye
had the shower been for some fresh air ! had three hours sleep :) feeling better
pain easier nearlt gone
when i saw consult he said to expect some pain as early days yet but will get it check out if a comes back or gets worse thanks for caring
warfarin i take at 6pm as i already have four tablets to take at bedtime i always say i will rattle or glow !!!!!
had to make do with chocolate biscuit !!!
DEE x

[DEE]

Col 23 as the saying goes i could sleep on a wasing line !!!
at one time i hardly slept but dont know if combination of drugs or because feeling out of sorts but can sleep at the drop of a hat :)
in fact if there was a prize for sleeping id win it :)
making up for no muffins with rhubarb and apple pie with custard !!!!
DEE x

[berylj]

hi dee
sometimes seems to be more bad days than good ones,i was dx nearly 4 yrs ago & my doc told that it would take up to 2 yrs, there is no quick fix just have to sit thru it!( his words)it is a case of take one day at a time,if you have been an active person it is hard to deal with it when you know this is for life, i go to addenbrookes vasculitis clinic ,excellent docs. do you have a clinic in northern england? rhubarb & apple pie!! yum! reminds me i have some rhubarb crumble in the kitchen & ice cream..........
from berylj328

[DEE]

i dony know of vasculitis clinic as such i attended a clinic at local hospital were they have wg consuit ent and renal consult and have a good support from my own gp who is literally just up the road which is helpful as they do all full blood and inr test for me to save me traveling into the town which is not easy when i dont drive
but have several friends who i can ask
DEEx

[Sangye]

Dee, unless the bedtime meds interfere with the warfarin you might try taking all of them at bedtime. If it keeps you from feeling lousy, it's worth swallowing several pills at once.

[berylj]

Hi dee
no need, i wondered if you attended same docs as myself as i know patients travel from all over uk, you have a good support network and its just what you need right now
hope you feel better berylj

[DEE]

no v centre close nearest would Birmingham were Jack goes to or Newcastle . have not found local support group
but wg consult keeps telling me there looking to find funding for one in Hull
not to bad today although not been awake for long today
take care of u
DEEx

[elephant]

Hope your better today Dee. take care

[Col 23]

Dee, glad to hear you are feeling a little better.
cheers Col 23

[Doug]

hi Elephant -Sangye
had the shower been for some fresh air ! had three hours sleep :) feeling better
pain easier nearlt gone
when i saw consult he said to expect some pain as early days yet but will get it check out if a comes back or gets worse thanks for caring
warfarin i take at 6pm as i already have four tablets to take at bedtime i always say i will rattle or glow !!!!!
had to make do with chocolate biscuit !!!
DEE x

329 Mint "stuff"-filled Oreo cookies/biscuits are a good alternative to making do for lack of a triple chocolate muffin. I created something of an ultimate version of this by combining five fillings on one cookie. Yeah, I had to eat the four fillingless cookies, too, but that fifth one! Wahoo!