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View Full Version : Hi, I am a college student trying to cope with lupus and the ickiness it brings.



Nihao1.
12-02-2011, 08:56 PM
Hi,
I was officially diagnosed with SLE and Lupus Nephritis when I was studying abroad in Taiwan the summer before last when I had just turned 19. So it's now been about a year and a half since I was diagnosed... When I was in Taiwan, I ended up in multiple hospitals there for about a week. One of the most memorable times was when I endured a 3 hour ambulance trip from a rural town through bumpy mountains to the capital Taipei with IVs in both hands. Shudder. I then left my program early and ended up back in Los Angeles where I spent about a month in the hospitals. Naturally I seemed to endure more problems in the hospital and was diagnosed with an additional problem a serious blood disorder which the doctors still do not know if it was TTP or atypical HUS. I was in the ICU for about a week since the swelling got so bad and my lungs were filled up with fluid. Though eventually I was freed from the hospital, on heavy doses of everyone's favorite little pill, prednisone, returning cytoxin visits and naturally like 15 other pills and vitamins. All of which everyone knows can cause serious complications of their own. In fact, a couple weeks after I left from my long stay I passed out from the heavy heart/blood pressure medicines they had put me on and I ended up in the emergency room again where they put more blood and fluids put into me.
Since fall of 2010 I've stayed out of the hospital. Fingers crossed that I don't end up back there anytime soon! But, I have had minor complications. Since I've finally stopped prednisone I've gotten 2 serious colds and am currently experiencing my second lovely sinus infection of the month. : ) Headaches are a very regular part of my life and have been since I was a small child actually. It's something that none of the doctors I've seen have been able to stop. I also get occasional migraines. Fatigue is also something I battle on a daily basis. It seems that I rarely have full energy and when I do it's not at the optimum time. For a college student this is something that constantly frustrates me. It's hard for me to cope with school, social life, dating, work, and health all at the same time! Also, I've been sick at least half the time that I've been away at the school I am currently at and it's just incredibly difficult.
It's also hard for me to talk about lupus with people. I don't feel entirely comfortable discussing it with most people. I fear being seen as too weak and different on the one hand and then on the other hand sometimes I tell people and I feel like I am getting disregarded. Does anyone have any tips on this? I wish that lupus was better understood and known. I know this sounds bad, but sometimes I get a little jealous of people that have a more well known disease like cancer, because at least people know what it is. I mean, I had chemo too, but no one knows that lupus patients can get chemo.
Depression is something that I have been also battling on and off for the last few years. It was bad when I didn't know what was causing all my physical pain, but now that I know that I have lupus, the fact that it still affects me physically and the fact that it is not curable only treatable in some ways drives me into despair sometimes. Also, probably like a lot of people on this site, I feel really alone a lot of the time and like I'm battling this disease all alone. Well, in some ways I am, by choosing to go to college in a small town with no family members or old friends around.
I know I rambled on and on but if anyone does read this. I don't know I guess I"m looking to find others who understand some of what I'm going through. Moral support also. Advice.

kim,l
12-02-2011, 10:47 PM
welcome whl i am sorry you are having such a bad time at the moment it is often other people find it hard to understand lupus or have not heard of it the fatigue and muscle pain as well as headaches and depression a lot of us deal with and when we are sick with colds or flu our immune system can be very low and takes us longer to recover. it can be a lonely disease but know we are here to support you as much as possible with questions and just when you need someone to talk to. you can messsage at anytime to talk.

debbie-b
12-03-2011, 05:12 AM
Yes, welcome to WHL.
You have been through alot and it must have been especially hard, while you were in a different country.
Kim is right, it does take us lupies alot longer to recover from a plain old flu or cold, than it takes non lupies, I was very ill with the flu for over two weeks and my husband was fine after three days. On top of that, it pushed me right into a flare, which is still going on now.
You said you want to talk to people that understand, well you have found them, all of us here understand completely.
We all have our good days, bad days and horrible days.
I know what you mean about people not understanding, we all know those people, but I get why they don't get it, because they can't. First of all, this is a very un known illness, secondly, we LOOK healthy, therefore it is hard to understand, what we are going through on a daily basis. I have given up on explaining it to people, who are not important to me.
I hope the doctor can find the right treatment for you.

Debbie

steve.b
12-03-2011, 05:53 AM
hi and welcome,
yes you have found friends.
read a few of the other posts.
they are our personal experiences with lupus.
add comments where you feel appropriate.

again welcome.

n.mac
12-03-2011, 07:44 AM
Welcome-to another midwesterner! I live in chicago but my sister lives in superior wisc. Hope you like snow.and cheese.Go Bears!
I certainly understand some of your frustrations,I don't tell alot of people that I have lupus but when I do I have gotten some strange reactions-everything from Whats that,isn't that a womens illness-we might be the minority but men get lupus too,to thats kinda like aids-right. No in fact its kinda the opposite to aids.

I am blessed with a wonderfull wife who is a nurse, but sometimes she doesn't understand what I go through.
Its at times like that that I really appreciate this site-No one knows a lupie like another lupie

magistramarla
12-03-2011, 07:56 PM
Hi and welcome to WHL!
You have found the right place for friends who can understand. Feel free to come here to chat or vent whenever you feel the need.
I'm visibly disabled, so when I list off my ailments, including Lupus, Sjogren's, RA, Psoriatic Arthritis, Meniere's, Spasmodic Dysphonia and possibly Spastic Paraplegia, people just give me a glassy-eyed nod and offer to help me get around.
This group really is a big help - welcome to the cyber family.
Hugs,
Marla

AmyM
12-04-2011, 01:16 AM
It sounds like you have had a very rough time with it. It stinks when just trying to stay alive consumes so much time, energy, and money! A couple of things Ive learned through my 20 yr battle; rest and nutrition are key! Listen to your body, learn its signals, and obey it! College, friends, and anything else you value has to take a back seat to your health. There is only one thing I value above all else, life. When I was younger, I had a hard time balancing raising my kids and staying healthy. My children (and I) had to accept that mom couldnt do some things, sometimes, because I needed lots of extra rest. After a near death experience, and an extremely long recovery, I was feeling down and useless and my husband said to me that he and our kids want me here so much, even if all I can do is lay on the couch, they'll take it! That has always helped me with the guilt I feel when I cant keep up. Productivity is still important to me, but I cant be of any use to anyone if Im dead. It seems that may be relevant to you as a college student. Dont over exert yourself trying to be "normal". Then you just end up sick and it takes even longer to accomplish your goals. Slow and steady with lots of rest.
As far as explaining lupus to others, Ive found the best approach to be short and to the point. "Lupus is an autoimmune disorder where your immune system can destroy cells and organs. The life expectancy is now about 65, where as only 50 years ago it was 30. The doctors and medicines have come a long way!" I think that lets people know it is a serious condition that you have to deal with.
Wow! Didnt mean to turn into a lecturer! Sorry about that! Ive never participated in this kind of group before so I'll have to learn the appropriate boundaries.
IMy heart goes out to you as you struggle with not only the physical aspects of lupus but also the mental. I am also new to this group and it seems like we've.both come to the right place for support and knowledge!

steve.b
12-04-2011, 03:49 AM
[QUOTE=AmyM;99539.....Wow! Didnt mean to turn into a lecturer! ....[/QUOTE]

amy in my eyes, you have not overstepped any boundaries.
sometimes the hard word is what needs to be said.
sometimes it is all love and hugs.

i appreciate and enjoyed reading your words.

Nihao1.
12-04-2011, 12:33 PM
No, I enjoyed reading your post. Very honest.
I think that I can learn a lot from lupus " veterans", like yourself. It's only been a couple years for me dealing with lupus and other complications it's caused, verses 20 for you. It's just so difficult for me to place lupus first without allowing it to utterly consume my life. I am trying not to let it define me, but I might be trying too hard. Because, that is what is happening to me here after I pushed my health to the back and put fun and school first. Naturally, this effected my health, and therefore everything else.
I value life, but at the same time so many times I just feel so angry and sad. I think it's great that you have such a supportive family. I know it's touch for immediate families. At least, it is for mine. People seem to react in such a spectrum of ways to lupus.
Thank you,
I am going to try to realize how important rest is and get used to the idea that although age wise I should not be resting as much as I am, as a young person with lupus, I should be resting MORE than I am now.
For nutrition, what have you found to work best for you? I am going vegan this month to see how I feel, since I know when I was vegan before lupus started I felt pretty good.

AmyM
12-04-2011, 02:46 PM
Thanks for your thoughts!

ritzbit
12-04-2011, 04:22 PM
Hi,
It's hard for me to cope with school, social life, dating, work, and health all at the same time! Also, I've been sick at least half the time that I've been away at the school I am currently at and it's just incredibly difficult.
It's also hard for me to talk about lupus with people. I don't feel entirely comfortable discussing it with most people. I fear being seen as too weak and different on the one hand and then on the other hand sometimes I tell people and I feel like I am getting disregarded. Does anyone have any tips on this?


Welcome to WHL =) I'm 19 and also have been dealing with the college/work/dating/health problems lately. I'm currently coming up on my finals and have the work every day, haven't felt good, and am trying to make time for my bf. And I think you will find many more people are understanding or know more than you would think. I never really told anyone until I started to tell some people and realized that many more people knew what it was than I thought.

hil.
12-06-2011, 07:32 PM
nihao1,

I'm also a college student away from home. I understand how the temptation to try to be normal and do all the things that everyone else does -- sometimes more just to prove to ourselves that we can. I've been having trouble deciding what matters to me, which activities I should be pursuing, which groups I should be active in, which projects to undertake. It's a lot of stress.

What I've found works best for me is taking 30-45 minutes a day to work out, and then finding one or two things in my day to calm me down and appreciate. I like to cook when I can, or I make myself hot chocolate with rich dutch cocoa and organic sugar. I know with finals coming up it's tempting to ignore our health, but it'll bite us in the ass if we do.

I decided to ignore my body's signals and now my costochondritus is acting up, I'm getting night sweats, my joints ache, and I believe my cold is accompanied by a yeast infection. Learn from my mistake haha.

Hope you're doing well!
-Hil

steve.b
12-06-2011, 07:55 PM
...I'm also a college student away from home... -Hil
hi hil, and welcome to our cyber family.
i am glad you found us.

Saysusie
12-06-2011, 10:05 PM
Welcome to our family. I am glad to see that you've already met and been welcomed by some or our members who are also college students. I am sure that they will be happy to share their experiences and wisdom with you. I am glad that you are here.


Peace and Blessings
Namaste
Saysusie

rob
12-07-2011, 08:18 AM
nihao1,

I'm also a college student away from home. I understand how the temptation to try to be normal and do all the things that everyone else does -- sometimes more just to prove to ourselves that we can. I've been having trouble deciding what matters to me, which activities I should be pursuing, which groups I should be active in, which projects to undertake. It's a lot of stress.

What I've found works best for me is taking 30-45 minutes a day to work out, and then finding one or two things in my day to calm me down and appreciate. I like to cook when I can, or I make myself hot chocolate with rich dutch cocoa and organic sugar. I know with finals coming up it's tempting to ignore our health, but it'll bite us in the ass if we do.

I decided to ignore my body's signals and now my costochondritus is acting up, I'm getting night sweats, my joints ache, and I believe my cold is accompanied by a yeast infection. Learn from my mistake haha.

Hope you're doing well!
-Hil

Hello Hil,

You give excellent advice!

I know what you mean about Costochondritis acting up. It's been a constant problem for me as well.

Welcome to our group,

Rob

hil.
12-07-2011, 08:22 AM
Thank you guys for your warm welcome. It's so nice to be able to talk to people about this.

Rob -- my mom has lupus as well, so I've been hearing advice all my life. :)

Happy Wednesday!

rob
12-07-2011, 08:55 AM
Thank you guys for your warm welcome. It's so nice to be able to talk to people about this.

Rob -- my mom has lupus as well, so I've been hearing advice all my life. :)

Happy Wednesday!

We have something in common Hil. My mother has Lupus too. She's been living with SLE successfully for over 20 years now.

Rob

ritzbit
12-07-2011, 01:09 PM
Hi Hil just wanted to say welcome =)

Nihao1.
12-09-2011, 02:56 PM
Hey Hil,
I'm so happy to find another college student! We should try and form a group or something.
Yeah, that temptation is so strong, everyone just seems to have so much energy, they can stay up late at night, dancing and drinking and running around from one place to the next and still get up by 10 the next morning and besides for the minor pain they have inflicted on their body, manage to be fine. If I do that... well, I have to be super healthy feeling, make sure I plan to get lots of rest the next day and the day before I go out, and it's still risky. And that's just one thing to think about, you are so right, from activities to friends groups to projects you need to weigh the risks and benefits as relates to health.
I mean college is stressful without having a health issue. : ) Though I suppose everyone has to weigh risks and benefits.
You're right, that 30 to 45 minutes a day is probably needed. I just started going to the gym/swimming this past week again and I am feeling a lot better. Just making it a habit takes a little time, but this is one habit that probably has a tremendous benefit to both the physical and mental parts of lupus.
: ( Sorry to hear that, if it helps, I understand, I'm going the same thing. Hopefully next semester we can try better to listen to our body signals. It's probably worth it.
Good luck on your finals though!!! And feel better, hopefully as the stress clears up, some of the aches and pains will also clear up(with the help of whatever meds are needed).

Melodyroseak
12-14-2011, 04:29 PM
Hi Nihao, We learn to adjust and explain better. Was diagnosed 16 years ago. I found the easiest way to explain to people is weird, but, they do understand it better. I ask people if they know what AIDS is, (most say yes), then I tell them that I am the EXACT opposite of the that. Most say they understand. BUT, I personally think they go home and look it up to see what they mean. (I would hope they do)

rob
12-14-2011, 05:29 PM
Hi Nihao, We learn to adjust and explain better. Was diagnosed 16 years ago. I found the easiest way to explain to people is weird, but, they do understand it better. I ask people if they know what AIDS is, (most say yes), then I tell them that I am the EXACT opposite of the that. Most say they understand. BUT, I personally think they go home and look it up to see what they mean. (I would hope they do)

I use that very same method for giving people a quick and simple idea of what Lupus is. Sometimes people look at me funny and take a step back, so always tell them that although AIDS is a communicable disease, Lupus, is not. You can't "catch" Lupus. Most people are pretty understanding, and you can kind of see that "Ah, I Get It" light bulb over the head coming on.

Rob