Just Diagnosed

[Sangye]

Rini, I think things will settle down as time goes on. I bet your voice will return to normal, too.

[pberggren1]

That sounds good Rini that you have a good doc now so close and don't have to go far to the lab. Sucks about the voice though, but like Sangye said I am sure it will get back to normal.

[Rini]

thank you guys, how are you these days?

[Rini]

I am taking speech at school and have to give an explanation speech. want to guess my topic? I feel like telling my class about what i have should be the easy part, I am not positive how to make the speech apply to them...we weggies are a rare breed...lately everyone i know has been reaching the "can i catch this" stage of excepting my diagnosis. growing up in a home of AI's the thought never occurred to me that people would be scared...I don't know how to react. My best friends mom has a AI and she explained to me that I am not to share food with her because she thinks they will get it... I know they are smart, where is this coming from?

[pberggren1]

I know what you mean Rini. I have met many others that I thought were fairly smart but when I tried to explain what Wegs is all about they thing it is contagious some how.......go figure, hey?

[elephant]

That is great that you are going to educate your class on Wegeners. Just keep telling them this is not a contagious disease. Most people know about Lupus and Rheumatoid Arthritis compare it with Wegeners. This is a good way to show awareness of our rare disease!

[Sangye]

I am taking speech at school and have to give an explanation speech. want to guess my topic? I feel like telling my class about what i have should be the easy part, I am not positive how to make the speech apply to them.

Maybe talk about the things healthy people take for granted like taking a deep breath, etc....

My best friends mom has a AI and she explained to me that I am not to share food with her because she thinks they will get it... I know they are smart, where is this coming from?

Try walking her through the logic: If Wegs were contagious then it wouldn't be a rare disease.

[Rini]

Than you all, these are very good ideas

[Rini]

Two years latter and the ride details seem so jumbled. It is incredible to have this log of such wonderful support <3 I did end up in college and i did become a mechanic/nurse/technology person although I am not graduated yet. My major is a mouthful : Biomedical Engineering and Technology...this is the people who fix the IV pumps and life support machines and the cute new born intensive care machines. Finals are this week and I am worked up in a knot about my math grades. If i do not pass it is a long setback, if i do pass my classes I can look fairly serious at graduating with at least an associates next spring (2014). I would need to take a break before going back to finish a bachelors. As my body heals on the outside the war has turned internal. My emotions are a roller coaster of failed focus and long waves of depression. Weggie drugs are not conducive for learning and deep thought. My mother tells me off to set more realistically goals. All i hear is she wants me to expect less of myself now that i am sick. I know she just wants me to take it easy but the conversation always translates in my head as WG is a permanent obstacle in my life i refuse to lose to. From the outside I can trick anyone into believing I am fine for at least a little while and I hate explaining. This is awful because I want to be proud to be a survivor and raise awareness, not hide my problems like handicaps and ovoid the topic in job interviews. So many people on this sight have done some very incredible things for normal standers and all of use have done so in aline/ weggie standers. I drive through down town for school and they have all these marathons for Cancer and MS and things everyone has herd of. It is not "raising awareness" if everyone is aware =p I fully support fundraising for all these things but I feel like there is no short easy none alarming way to introduce such a big part of me to anyone. Worst of all i find myself being condescending in my head to people i pass and barely know. Crying about some incredibly trivial mishap. This is beyond ridicules because everyone has their own challenges. I am having mostly stability problems and I have tried counseling at school, the therapist on staff and several medications. In the end im a pred tapering monster with aggression and depression with a hefty scoop of peppy to survive. My boyfriend is very supportive but some of the few suport i have left as i still live on my own, my family moved about a city away, my friends one by one maxed out on the no fun sicky and left and my councilor is far to out of his league to help....like almost any doctor i have seen ever. My grandfather has had a minor problem and gone to the hospital but no one told me. As their only family in town I would have rather-ed some communication over him letting my forgetful grandmother drive herself home. She has diabetes and some undiagnosed something that makes it a very dangerous idea to leave her unsupervised. Sometimes i worry I will become that as she tries to tell me what day it is or what day they went into the hospital. anyway this is the group of people i am organizing hospital stuff for while my parents are doing their classes and work....with my finals...and that is my outburst -_- I cant sleep because my bones hurt from the rain :P I know if it where a more serius hospital situation my family would have come up....or so my mom says in a text after refusing to call me

[chrisTIn@]

Finals are this week...

Wishing you the best of luck, hope you can concentrate.
Then, when everything goes right, you 'll be able to take a break.
In my opinion, taking some extra rest always is good in case of jointpain.

You can be very proud of yourself, for doing so good already!