Confused!: Hi... My disease was diagnosed in... - Vasculitis UK

Vasculitis UK

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Confused!

shanahamza profile image
5 Replies

Hi... My disease was diagnosed in September 2017. I had rashes and terrible swelling on my legs and ankles. I was taken to a rheumatologist. Biopies revealed that I was (am) suffering from leukocytoclastic vasculitis.

I was given prednisolone, azathioprine, methotrexate, alphacalcidol, vitamin tablets and acidity regulators. During medication period, my weight got increased anomalously. My face became roundish that no one could identify me!!! I Had diabetes also. Still Can't believe how could I survive without candies! Really I had a tough time physically and mentally. Now I'm fine (thank god). Currently, I'm taking azathioprine 25 mg per day. But I'm afraid that will this disease relapse again? I visit my doctor once in every 3 months. I'm 20 and I have suffered alot by this time. I really don't wanna be a patient again. In June, I'll be going for my higher studies outside. But my parents are worried about my disease. I really feel sad and anger 😞. What should I do? I'm confused.I'm a mathematics student. I need a good career. I still believe I can do. But my disease is frightening my parents.

I hope my "fellow sufferers" can understand my situation.

Can I believe that I'm 100% ok after stopping all drugs?

Waiting for your replies...

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shanahamza
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5 Replies
Lisalou19 profile image
Lisalou19

Bless you, you are so young! I don’t think anyone could guarantee that you will be completely fixed after medication, I doubt most consultants could either. But your on the right tracks at an earlier stage In your life and receiving medication.

I strongly believe with a strong mind you can achieve anything you want you too. Please speak with your consultant about your concerns . Remember we are all individuals and we respond to our illnesses in individual ways.

Stay positive and positive things happen xx

shanahamza profile image
shanahamza in reply to Lisalou19

Thank you. I have discussed with doctor. He is also saying the same. He told me to follow my dreams but i must always be concious about my illness. At first i used to blame god for all these. But now i praise him that he selected me because he wants to make me strong and patient. I pray and hope that good things will happen to everyone.

Lisalou19 profile image
Lisalou19 in reply to shanahamza

Awe you’ve made me so emotional.

If my daughter sounded half as strong as you I would be so proud.

Honestly you will achieve what you deserve and learn ways of coping. Maybe try a little counselling to talk through your health so that you are fully aware of your inner thoughts and feelings.

Going forward remind yourself some days will be better than others and if you need a break or a rest you go for it.

You can do this. I am Here for you if you ever need to talk

X

shanahamza profile image
shanahamza in reply to Lisalou19

Ohh...thank you so much sister😊

Samisntverywell profile image
Samisntverywell

Shine shine shine! It's had quite enough of your life already.

I'd suggest letting the college know when you arrive, just in case you need any support through your course (prob not on the application though!! Wait til you have a place). That way if you need time off for appointments or anything else you'll have backup. All colleges have welfare, student support, learning support etc.

Maybe you could get your college GP a consultant letter and information booklet about the disease, so they are up to speed in case you need them.

Of course your mum and dad worry, what kind of parents would they be if they didn't? But you can keep in touch a million ways, and visit in the holidays. You sound incredibly sensible, and I'm sure you would not take risks with your health. Maybe you can find a housemate to confide in, and ask them to keep a watch on you too, in case you need backup at home. Your parents might feel less worried then.

I know none of us want to be defined by illness, but we do have to be sensible and make sure we have a support network.

Thanks for posting, I'm so excited for you.

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