What a week

[DEE]

hi everyone. i think some of you may have heard about me before now im the person BARON talks to you about . although i have never posted a i read all the post daily . many i can identify with and have taken a great deal of useful advises onboard the reason why i say what a week at home again waitng for result of bone scan and kidney biopsy (by the way jack u were right it did hurt !!!)
i then go and get a chest infection on top
as you all know that means more tablets and to add to an inhaler managed to go to daughters birthday party for a few hours felf like a beached whale ctx and steriods onboard and now decided i need tablets to slow heart down to add to blood pressure tabs they make hands tremor !!!
headache back buzzing in the ears and i wont start on the crusting in the nose but as doug told BARON its my new normal he also told you that i see this disease as a jigsaw puzzle with all the pieces mixed up guess they feel mixed up and upside down at the moment
dont know what i would do without BARON let sme shout and yell understands why there nothing in the fridge and accepts when IM ASLEEP AGAIN something im good at during the day and not so good at night
my biggest plus is that i have the best wg consultant on my case i have had him since the beginning saw through methro treatment which didnot work and is now helping with ctx treatment have daily contact with his secertary or himself if needed and have now got gp on board who already has a wg patient and luckily five mins from home so i have all my bloods done at the surgery and hospital only 40mins away
anyway i have talked enough and as i say to BARON the someone worse than me oout there take care of youselves hope to speak to you all again soon DEE x

[Jack]

Hi Dee, great to hear from you.

I think you are quite a way from reaching your New Normal at the moment. I think things will improve from the point you are at now once the medication has settled down and your condition is a bit better controlled. It took me some years with several changes to medication before I reached a stable condition.
Sorry to hear that the renal biopsy hurt. When I read all the other posts saying that it didn't, I thought I must just be a bit of a wimp!

[Sangye]

Hi Dee,
It sure is great to hear from you in person! I'm glad they switched you from mtx in time. So happy you have a good Wegs doc and especially that he's easy to get hold of. Feel free to scream on here if you need to. We all understand! I hope things turn around soon for you.

[DEE]

Thanks jack i understand what u are saying i have spent the last two years in hospital or in bed recoverying from one thing or another . they thought i had brain tumor then tempral atherites also rhem athritis .confused them when i got cellulitus in leg !!! at the same time as blurred vision nose bleeds etc thank goodness to a referal from ent consult who then refered to immiunoligist who spent five years doing reach and working with wg patients in ireland he gave me his hand out he wrote made things very clear his name is dr abuzakok . have followed your advise several times got prescription sorted and disabilty badge how much n pain has that saved friends can park near for me now which is a god send on a bad day
thanks once again will keep intouch DEE

[jola57]

Hi Dee, I hope the meds will do their wonder and you get back on your feet (so to speak) soon

[elephant]

Hi Dee, it is good to hear from you. I have read most of the threads on here and getting to know people on here. Wish you luck on your journey, sounds like you have a good doctor.