View Full Version : "Its been a frustrating journey"

01-16-2011, 10:32 PM
Since the diagnosis of Lupus at age 17 (not to mention the 12ish months before hand when doctors couldnt figure out the problem) life has been a difficult task. Having to complete important exams literally days after being diagnosed, massive arguments due to the anger that high dose steroids cause, having a number of stays in hospital, losing contact with all your mates, not being able to do what you love, seeing everyone else you went to school with partying every week, plus the depressing fact of feeling ill everyday has all been one heck of a challenge.

Hoping that at some point during 2011 the time comes when I am able to get my life back on track. I am now 19 and strongly have the belief I will improve dramatically. The infusion of Rituxan will hopefully help things stay in control, and also be able to drop back in Prednisolone which causes so many horrible effects (in my case)

01-17-2011, 04:27 AM
Never give up on Hope. Yes, you've had a hard time. Try some healthy eating and exercise to the best of your ability. I for one feel better when I've been exercising and moving. You're only 19; I'm close to 63 now. I was shy so I never had many friends. Try to keep close to the ones who understand you; it helps to strength you.
Find things that you can laugh about - that makes you feel better too. Seriousness drags us down.

Listen or don't listen; make your own choices! That's really important; don't let the downers get you. That leads to bad things.

Big cyber HUGS for you, youngling,

01-17-2011, 05:27 AM
Here is to a wonderful 2011 for you! I hope this year is your best ever

01-17-2011, 05:42 AM
Wishing you the best of luck!!!!!!!!!!!!!! Hopeing you have a wonderful 2011!
Gentle Hug's to you! Diane,

01-17-2011, 06:22 AM
I know how u feel. I was diagnosed at 17 as well... infact i spent my 17th birthday in the emergency room. Im about to turn 19 in a short while and have just finished school. It's a long road thats for sure.

I hope 2011 will be better for you and that everything starts sorting itself out. Lupus really hurt my social life as well, but im definatley getting it back on track. I hope u do as well. You just have to make sure u stay positive.

Well we are close in age so i will be around if u ever need to chat.. or just voice ur frustrations

xx take care :)


01-17-2011, 11:29 AM
I know how you feel too. I was diagnosed at 16 and the past 2 years have been rough. Friends dont always get it and its really frustrating but try explaining everything to them. I've kept the ones that cared enough to stick with me even when I pushed them all out. Im always hear if you want to talk as well =)

Merrilyn OZ
01-17-2011, 05:30 PM
Hope 2011 is the year everything settles down for you.
Like Noona I know how hard it is missing all the things you should be enjoying as a teenager,I'm also in my 60's. I got really ill at 17 and was'nt officaially diagnosed untill 19, missed out on overseas travell and other social events that had already been planned and felt very down and left out. I was put on Prenisolone big doses to start with but have been on maintainence dose of between 15 - 9mg a day for some years now. However I'm sure that once things settle for you, you'll pick yourself up and get on with life, believe me it will happen. Keeping busy and as active as you can is important keep close to those around you who will give you positive and happy support. You'll find this WHL family great for support wish it had been around years ago I would't have felt so isolated with this strange sounding condition.
I'm also only to happy to talk should you want to
Are you watching The Open? Hope that torrential rain does'nt get as far as Melbourne.

01-17-2011, 08:56 PM
First of all can I say how good it feels to have a caring bunch of people that understand your situation. Cheers guys its very much appreciated, and its not just being typed to be nice, its a true thanks.

A fair few of you were diagnosed early as well, so theres alot of understanding going on here which I like. Merrilyn I am certainly watching the aussie open, "CARN HEWITT!", Hazel its quite incredible how similiar our situation is, I was diagnosed very close to my 17th birthday and spent it having a kidney biopsy....no fun, however I hope the both of us get back to winning ways and im confident we will. Nonna I will do my best to eat well and stay fit, it certainly does make you feel better. Ritzbit, Diane, Tgal thanks for all the support.

Luckily I have a good doc that understands me and my feelings. I hope for the very best outcomes for all of you.

01-18-2011, 10:37 AM
you have been on quite the journey for such a young lady,

i join you in wishing for a better 2011, and i am so glad that you found us. You are right, there are several young women here who try to juggle the demands on your life with the limitations of your illness. Keep taking your baby steps, and hopefully by the end of the year, you will look back and see that you have made giant steps along the way.

01-18-2011, 06:01 PM
Mountaindreamer I am just informing you that I am a male haha, I certainly should have made that more clear seeing that Lupus is much more often a womens disease.

01-19-2011, 08:38 PM
Wow i have never heard of a male having lupus before. I think i have read that only 10% of lupus patients are male, but i have been yet to come across one before. Sorry to hear that ur 17th was no fun either. I had my kidney biopsy a little later down the track... possibly one of the worst experiences of my life! oh well :P

Glad to hear that ur happy with your doctor. I went through my fair share of bad ones, but i have to fantastic ones now!

Hope your well :)

01-19-2011, 09:01 PM
Hi Hazel! While there is only a fraction of Lupus patients that are male we have several on this board. As a matter of fact one of our (ultimate) Moderators is a male with Lupus. His name is Rob. We also have a section just for men because they tend to get left out when all of us females start to run our mouths!

Glad that both of you have found good doctors. It is hard to do but really important!

01-20-2011, 08:21 PM
Hazel I hope you are also well, its good to get some feedback from someone your age. I really should mention in every post or thread that I am a young male from Australia because its so much more common for females to have Lupus. I agree the kidney biopsy isnt the best experience, ive had 3 biopsy's in 12 months.

And to Tgal =] I certainly dont mind you females yammering on!

01-20-2011, 08:30 PM
You have a good attitude, and that will help you a lot.
I know that you like the support from the young ladies your own age (wink, wink), but if you ever need motherly advice,
there are quite a few of us here!

01-20-2011, 10:40 PM
Marla you gave me some sort of a grin with your reply, and ive recieved plenty of motherly help and support from a large amount of very nice women on "we have lupus" including yourself on a number of occasions. Thanks a million