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Do's and don'ts


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#1 CREST at 16

CREST at 16

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Posted 07 June 2009 - 03:43 PM

For those who don't know, I am 18 and in the fall I will be starting my freshman year at college. I have just finished high school and in my 4 years I wore long sleeves everyday to hide my scars on my elbows. I am determined not to hide them anymore in college but how do I become comfortable showing them off and how do I deal with the questions that will be asked like "what happened"?

At college I will be living on campus and the average temperatures of the area is mid to upper 80s/lower 90s in summer and 50s in winter. In the summers is it ok to be out in the sun, wear flip flops, and shorts..or are those no-no’s? They have a great activity center where there is a track, workout machines, a pool, and even indoor rock climbing. They also have many unofficial sport groups and I am thinking about doing basketball and/or softball. Is it a good idea to do some things at the activity center or do sports with CREST? Also, I know there is drinking in college, and I know it is not legal unless you are 21. I'm not saying I'm going to drink or that I'm not going to. In all honesty, it's a part of college and I may try it. But, I guess, I was wondering if drinking is bad for people with CREST because if it is then I will definitely not be partaking. Are there certain foods that are bad or good?

Are there any things I should stay away from in college or things I should definitely do? Basically, I just want opinions on how to live college life dealing with this condition...

:)

#2 jefa

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Posted 07 June 2009 - 05:44 PM

Hi, CREST at 16. Do you have a name? It would be so much nicer to be able to address you by name. :D

These are some excellent questions. It's been a long time since I faced these issues and I didn't have the extra factor of an illness to contend with. It is an exciting time of your life and you should make the most of it.

By all means stay as active as possible. If you enjoy sports and physical activity, go for it. Excess exposure to the sun can be harmful to anybody, so make sure you use appropriate sunscreens. Some medications may make you more sensitive to the sun, so keep an eye on the instructions that come with them.

Alcohol is not a necessary part of college life, especially if you are into sports. If you do experiment, do it responsibly. Again, this may not be a wise choice if you are taking medications. There are other adverse effects such as increased problems with reflux and issues with the liver to think about as well. Try to keep a healthy balanced diet with fresh, wholesome foods and drink plenty of water. Junk food is a big temptation but try to keep with healthy options. Get plenty of rest, too. Try not to stress out too much. Enjoy.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 omaeva

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Posted 07 June 2009 - 06:44 PM

Stay active, get plenty of rest, don't procrastinate, always have a sweater with you!

I just graduated this past year, and after pushing myself too hard I crashed and my sclero got a lot worse very quickly, still trying to get stuff under control.

I reacted badly to AC (air conditioning) in classrooms; little heating glove things helped a lot.

Pulling all nighters and stressing out made me even more fatigued.

Work out regularly helped a lot though, try to stay away from energy drinks and supplements like that.

And as far as visible skin issues I just got used to it. And if people ask I say. 'I have a weird autoimmune thing' seems to work as an answer for most.

Good luck!

#4 Margaret

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Posted 08 June 2009 - 01:00 AM

Hi Crest at 16 ,

I don't have sclero but do have reflux and I know that alcohol (wine or beer) makes it worse for me. If you have esophageal problems, I would stay away from it. Like Carrie said, too, it could interfere with some of your medications. I know that my own son (diagnosed with UCTD/Sclero at age 18) is on Plaquenil and other assorted meds and that he sunburns easily because of the meds. He's just finishing up *college* this year at age 21 and really enjoyed working out with the weights. He did tire easily, so make sure you don't over do it. There is nothing wrong with taking a *cat nap* each afternoon to get you through the evening fun hours. Not all college kids drink... just be mature and say *I can't, I've got this funky autoimmune issue and I'm on meds. Drinking will interfere with those meds and, then, I won't be able to go to college if I get sick again.* Say it over and over and over again till your new friends *get it.* Gareth can't handle carbonated drinks either.
Best of luck to you, kid. We're all cheering for you.
Take care, Everyone.
Margaret

#5 Shelley Ensz

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Posted 09 June 2009 - 09:26 AM

Hi CREST at 16,

Congratulations on your impending college days! I hope you have delightful and healthy college adventures.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 eah

eah

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Posted 09 June 2009 - 03:51 PM

Hi,

Congratulations on going to college. You are really mature to ask questions about what is best for you.

Be careful not to over do it. Stress can make any illness worse. College can be a great and a rewarding experience. The friends you make there will understand if you explain your situation. If they are true friends, they will not judge you if you can't drink or stay up too late.

Be careful with the drinking at a young age, especially with crest. It does make your reflux worse. Caffeine is probably not the best choice either. Moderation in everything is key even when you are old enought to drink.

You are young and if you follow your doctor's advice, take your medications and rest, you will enjoy college a lot more. You have a lot to look forward to and living a healthy lifestyle with good choices will help you enjoy it better.

I have scleroderma and probably have had it since I was 19. I wasn't diagnosed that early though, even though I had symptoms. I am now 43 and although I am more challenged physically, I still work full-time, am married and have three beautiful kids.

I wish you all the best. Enjoy yourself and surround yourself with people who respect your decisions. Take care

EAH
ANN

#7 CraigR

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Posted 10 June 2009 - 07:34 AM

This disease effects everyone so uniquely. Obviously you have plenty of energy, and CREST is the slower onset type of scleroderma.

I had my first symptoms at age 22 (32 years ago!), and, other than cold hands and the occasional finger ulcer, there was little effect.

The one recommendation that I would give would be to be aware of how you feel and don't push yourself too hard. The "No pain, no gain" approach to physical activity is bad for this disease. Though you may have the ability to keep up with the gang, remember that your body is probably more vulnerable.

Craig