welcome to mixie world
Hello fellow Mixie,
Congratualtioins on the dx. Even though I, as you, knew it was coming it is still a good day to know that indeed this wierd and wonderful(?) world of being a Mixie is real. The best advice I got from the wonderful people here is that 'you are not crazy or lazy". Lily's advice of 'one day at a time' is very very very true. All the tests you are going to get are important to establish a base line for future testing if needed. I have aweful viens and a needle phobia so I understand the issues related to that. All my blood work is ordered as resting so no hot shower or walks before hand so I always use a hot water bottle on my arms before tests, drink plenty of fluid and allow nothing bigger than a butterfly needle. They only get 3 tries and we call it a day - no more than two tries per person - and no newbies. I have very active Raynuads so that doesn't help either - sounds like you do too
You seem to be taking the same road I did as far as meds go. It has been the better part of six years for me and I can tell you the drugs worked well. I'm not saying I am cured or anything but I lead a semi normal lfe and am tons better then when I started. I am off pred now and take 10mg of metho weekly. I am allergic to plaq so that wasn't an option.
The road from the beginning to now was tough no doubt about it - like living on a rollercoaster sometimes but slowly things get better. As you accept the new you - and learn to like you with the new limitations you know have life opens up all kinds of possibilties. Easier said than done - some days I still have issues with needing to sleep or rest, feeling sick at least one day a week from the metho or having what seems to be endless medical appointments but when I am honest I know it beats, hands down, how I was when this all started.
I wish you the best of luck with all the tests.
hugs
Pukeko
Hello fellow Mixie,
Congratualtioins on the dx. Even though I, as you, knew it was coming it is still a good day to know that indeed this wierd and wonderful(?) world of being a Mixie is real. The best advice I got from the wonderful people here is that 'you are not crazy or lazy". Lily's advice of 'one day at a time' is very very very true. All the tests you are going to get are important to establish a base line for future testing if needed. I have aweful viens and a needle phobia so I understand the issues related to that. All my blood work is ordered as resting so no hot shower or walks before hand so I always use a hot water bottle on my arms before tests, drink plenty of fluid and allow nothing bigger than a butterfly needle. They only get 3 tries and we call it a day - no more than two tries per person - and no newbies. I have very active Raynuads so that doesn't help either - sounds like you do too
You seem to be taking the same road I did as far as meds go. It has been the better part of six years for me and I can tell you the drugs worked well. I'm not saying I am cured or anything but I lead a semi normal lfe and am tons better then when I started. I am off pred now and take 10mg of metho weekly. I am allergic to plaq so that wasn't an option.
The road from the beginning to now was tough no doubt about it - like living on a rollercoaster sometimes but slowly things get better. As you accept the new you - and learn to like you with the new limitations you know have life opens up all kinds of possibilties. Easier said than done - some days I still have issues with needing to sleep or rest, feeling sick at least one day a week from the metho or having what seems to be endless medical appointments but when I am honest I know it beats, hands down, how I was when this all started.
I wish you the best of luck with all the tests.
hugs
Pukeko
