[applesauce]

Hi everyone - I feel bad that I only show up here when things are really bad and I'm starting to melt down instead of being here consistently to also help others, but I also am a little self conscious coming on here from school where I'm not often alone, with roommate and friends, and I'm really busy, and such. So, that disclaimer/apology out of the way (my mother always says, 'as long as you feel bad...')...

I've had three sinus infections this year, making me pretty much constantly sick since october. This is incredibly annoying and inconvenient, not to mention irritating for everyone around me. But then it got worse.

About a month ago I got triggered into a flare probably from stress due to a bad relationship coming back to haunt me. My knees and hands have been killing me, I've had to stay the night in my friends room because I couldn't walk back to mine, I spent basically two days in bed apart from dragging myself to classes, during which I barely saw anyone at all and started going crazy from just being cooped up and lonely. My doctor wants me to come home for the rest of the semester on medical leave. I told her no, because if I go home now, there's no point in coming back. I need to be able to stay and function through these flares because there's no cure and I never stay in remission for longer than three months so this is basically how my life will be, and I should be able to handle it.

Just the past few days have started being really hard emotionally on me, it's the sudden re-realization of the whole there-is-no-cure-this-is-forever thing, because I was diagnosed when I was nine and I had no real way of grasping that then, and I guess it's just really hitting me now that I'm almost 19 and will have had this for more than half of my life already, and I'm really young.

I'm terrified about the future because I don't know what I want to do or how I'll do something that lets me get health benefits when all I'm good at is creative writing, or how I'm going to keep a steady job, and what I'm going to do when I'm separated from all my friends. I'm incredibly anxious lately, and shaky and close to tears all the time and I'm scared I'm going to drive everyone away because I'm no fun to be around anymore. College was so great because i didn't really have a support system at home and now I do, and I'm so scared of losing it. Plus I have all this pressure (from myself) to do well just to prove I can.

So a pretty big part of me says I'm definitely staying and sticking this out and not letting this stupid disease wreck everything, and another kind of huge part of me just wants to go curl up under my covers and give up because I don't see how this will ever get better.

Wow, that was long and emotional. Sorry, everyone. I just feel like I'm leaning as hard as is okay on my friends here and I just need to talk here instead of to them so that they can get on with their lives, too.

 

[oesa]

Hi Applesauce - we haven't met yet, I'm Lisa, and I also tend to only show up around here when I have concerns about my SLE and need some support from people who understand how frustrating this can all be, and that I can ask about some of the medical stuff. So rant away, we've all been there!

I don't really have a magic bullet for you. You need to do what's best for you, and your body, and your mind. You may however find it reassuring to know that there are some of us out there that have survived and thrived past childhood diagnoses... I was diagnosed when I was 14, but think I'd probably been showing symptoms for at least a year or so before that. I'm 37 now (don't tell anyone!) and generally doing well. Once I got out of my teen years, my lupus settled down quite a bit, and I've actually been in remission for most of the past 15 years or so. I have a job that lets me write a lot (I'm a fundraiser for a medical school) which combines my people skills, my analytical and creative writing skills, and hopefully allows me to contribute something meaningful to society at the same time. And since it's with a university, I get fairly comprehensive medical coverage too... I completed my university degree in 5 years instead of 4, but I think that was mostly because I kept changing my mind about my major!

I'm wondering why you feel so strongly that taking a break would be completely giving up - it sounds like you've had a rough year, and maybe a break is just what you need to get your lupus under control and be ready to dive back in in September? Or maybe you can drop one or two courses, and have a reduced load until the end of term? If you haven't done this already, you should definitely see your academic advisor, and if your college has a health clinic, you should may want to check in with a counselor there too - I found university really, really stressful for many of the same reasons you've listed (relationships, fear of what the future may hold, etc..) and talking things out with someone really helped me a lot. I saw someone regularly in my final 3 years (apparently I needed a LOT of help!) You just sound kind of overwhelmed, and sometimes counselling can help us look more objectively at things. And even if not, sometimes they can just help us find coping strategies and resources that may help us out. Most colleges and universities have a vested interest in keeping students in school (trust me on this one, I work for one!) so will do whatever they can to help you succeed.

Anyways, I'm not sure you'll find this at all helpful, but I did just want you to know that you're not alone. Whatever you decide to do, make sure it's the right thing for YOU, and please let us know how you're doing. If you want to PM me, feel free, I'm pretty open about my experiences....

Hang in there!

Lisa

 

[ALWIN]

Hello Applesauce

Do not feel bad about coming on the boards when you need support.

It is 04.47hrs right now and I am here with a headache that has woken me up and is blowing my brains out - so what do I do? Come on here and sit in front of a computer with a nice bright screen and try to read!

Sinus infections and the like are not just troublesome, they get you and your body down, and if they keep coming back, perhaps your body is asking for a break?
I am slowly learning it is not a machine you can keep whipping ever onward through sheer force of mind. Even if you are young, clever or determined.

It sounds as if your body and mind is asking for a bit of a breather. Sometimes we owe it to ourselves to do just that.

Lisa has given some really good and insightful advice.

I also wanted to ask why you feel you cannot take a break from your studies? Why do you feel there would be no point going back to college if you were to have a break?

I think it would be a great idea to approach your college to get a bit of counselling. But I also think it is worth considering being a little bit more gentle with yourself.

I understand you feel you need to work through flares because they keep returning and you want to keep up your progress in college / life. I think it is probably wrong to think you should be able to deal with flares and carry on regardless. I think you are more likely to have a good life if you take care of yourself and do a bit of pacing. I do think you are probably asking too much of yourself, and I imagine you are more likely to have flares if you push yourself in this way. There is no shame in slowing down a little.

Having read that back it doesn't seem that helpful. But I really do think Lisa's advice is good.

Take care Applesauce. I do hope things start to improve for you soon and that you cut yourself a little slack.

 

[ROSJAC]

Hi Applesauce, My heart goes out to you. I wasn't diagnosed till age 47, but feel I had SLE since 35...my MD was elderly and Lupus was not in his vocabulary. I can't imagine having this ugly disease at such a tender age. I taught for 26 years. I should have stayed only 24. The last 2 were horrific. I would burst into tears every day when I got into my car to drive home. My friends at school were truly my extended family, and now I feel a bit out of the loop with some, but the true ones ring me up often. I guess my point is please do not be so tough on yourself and push so hard. Take a much needed break. Everyone was put on this earth for a purpose and you will find yours. The ladies before gave you excellent advice. I wish I had had someone to understand Lupus and would have been there to guide me, especially in the beginning. Sending you good thoughts. Rose

 

[pollianna]

Hi applesauce, firstly I wanted to say, never ever worry about coming here when you only feel bad. Many don't have the time constaints that you do and are here for others because they can be. Everyone here understands what you are going through.

You sound as though you need some support, someone to talk through your feelings with at college. It won't take away your diagnosis but it might help you to talk through and have someone "hold your hand" as you try to come to terms with this. I'm struck as I write this by your amazing determination and bravery at soldiering through and being so responsible for yourself. You could have crawled into a corner and let other's take over your life but you didn't. Now perhaps looking at that balance may help you to allow yourself to lighten your schedule and maybe take a little longer to qualify?

Perhaps having an extention on your studies all planned out and agreed could give you the peace of mind to be able to let go a little without feeling overwhelmed that you have given up entirely.

You sound like an incredible girl. I hope you start to feel better soon

P xx

 

[Zoi]

Hey there :hugbetter:

I'm very sorry to hear you're having such a rough time and have been so unwell lately....

You've gotten excellent advice from the others already, but I just wanted to add that sometimes when we try to look at the "big picture" things can seem overwhelming to say the least... You're 19 years old and of course lupus and being ill is an extra "burden" on your mind especially when thinking about the future and what life may hold but it might help if, just for a little while at least, you tried dealing with things one step at a time. Never mind what's going to happen or not going to happen in 10 years or 5 years or how you, me or anyone will hold down a job when that time comes. One never knows what life has in store for them and while you can stress about things and try to prepare for every possibility as best as you can no one can ever predict what twists and turns their life will take and where it will lead them.

Believe me I understand where you're coming from, I'm 23 myself, have been ill for the past three years now which is admittedly a lot less than you have but I do know a thing or two about being ill at a relatively young age and in university especially, and yes it is incredibly hard to realize and process the fact that there really is no cure for this and that lupus is "yours" for life so to speak and it's even harder when that realization comes at such a young age...

I was reading your post earlier today, in the personal stories section, and I think you make an important point there perhaps without even realizing it. After the meds they gave you failed and you were ill most of the time and in horrible pain and your kidneys were due to fail, rituxan came along and helped immensely. And if in 10 or 5 years time things get really rough again, chances are there's going to be more options available to patients med-wise (the new humanized monoclonal antibody, kind of like rituxan without the mouse component, is already passing its clinical trials) and they might be more helpful for patients than present meds have ever been. Having said that though since rituxan is working for you at the moment, then that's a brilliant thing and really all that matters for now!

Now re your university studies, I wonder if there isn't a way you could convert from a full time student to a part time one at least for a semester? Do talk to the student support services people; they are there to help you get through the rough patches and make your life as easy as possible and they can arrange things like extentions and absences etc etc. If you don't want to go home, then you don't have to. You can keep the option "open" in the back of your mind and work towards staying in school. But until you get over this flare you're in at the moment, if you want to stay in school then it does sound like you need some help (and there is absolutely nothing wrong with that) and student support services is probably the first place to go for that! :blush:

The other points you make are kind of harder to address than the practical stuff... I can't tell you things will get better or easier for you, me or any of us and I can't tell you whether the future in general will be rosy or not. What I can say with certainty is that you can't, you mustn't lose the will to fight. Everyone has to fight in life; to build relationships, to study, to hold down or to even find a job... The only difference between us and other people being that we have to fight a lot harder sometimes and for much simpler things, things that other people take for granted... I tend to personify my ilness a lot of the time and say things like "it is awake" or "it's getting angry" and for a long time I wondered why I do this. Now I've come to the conclusion that I put a "face" to this rather intangible disease because it helps me get a more tangible idea of what I'm up against and that helps me keep fighting and getting up after falling down. I've fallen down more times than I can count because of this and I have lost so many battles (including taking two years off from university to be hospitalized) and yet every time I get up in the morning and I feel well I say "Zoi 1, APS 0 today" or "You think you're strong? I'm stronger!". It may sound silly, but it helps; not on the good days so much but on the bad ones when I feel that there's no end to this, that this is all there is to life, that it can't possibly have ever been any different and that it can never get any better... On those days when it's "APS 1 and Zoi 0" I am reminded of all the times I've gotten up and the reverse has been true and that helps remind me that things can and have been different and I just have to keep fighting and they will be thus again. All much, much easier said than done of course and finding the will to keep fighting when things seem bleak and there's no end in sight isn't an easy feat but it is worth it and things can and do get better.

You're very lucky to have friends there who listen to you and who you can talk to about this. And I think, actually I'm pretty sure, that it's ok to lean on others when you need to and to ask for help. You've been through a lot in a short amount of time... Please talk to your tutors, your lecturers or to student support services and just take some time for your self, to relax a bit, de-stress, eat well, sleep well and to get some of your strength back. It might also be better (if that is an option of course) if you don't make any decisions until you're a little bit stronger and are feeling a little better, as things may seem very different then than what they seem today... :blush:

Sending loads and loads and loads of strengthening hugs your way :grouphug2::grhug:

:flowery:

Zoi

 

[applesauce]

Hi everyone, thanks for your replies...In answer (I don't want to sound difficult!), a huge reason I don't want to leave is that I don't have a lot of support at home, and I feel like it would stress me out more to be away from my friends than to try and get through the rest of the year. It's silly, but 6 months is a long time to not see anyone. I also can't imagine having to tell my parents. They don't even know I'm flaring. They know my urine has been wonky, and that's it. I don't like worrying them.

I'm considering calling the counselors here and seeing if it helps at all. I've been through my fair share of therapy and it's never really done much besides frustrate me, but I haven't been sleeping because of anxiety so it might be time to give it another try.

I know it's probably more okay than I think to talk to my friends about it, but I feel bad making them deal with it when they also have their own work to be doing and their own things to deal with. I know that if I had to deal with another one of me, I'd be exhausted and wouldn't really want to be around myself very much.

I'm going to try and perk up a bit now, all I have to do is write a history paper and I'm done with this week, and tomorrow's my birthday, the first birthday that I'll have friends to celebrate it with, so we're going to have a positive attitude at least for a few days and try to just enjoy it instead of letting my health ruin it. Thanks so much everyone, your comments did help a lot and I'm always open to more advice if you've got it

 

[Katharine]

Hi there

I think I do actually understand where you're coming from with the support and actually "seeing" people being so important. I'd say a lot of us understand that and also that many have possibly stayed on a lot longer at work etc. for exactly those reasons.

When it comes down to it, I think you're a pretty balanced person and you know what will and won't work for you. I do know, however (from previous posts), that you might tend to push yourself just a wee bit too far before seeking help or before giving in and missing a class or whatever. That might be something to keep in mind which might help not to go so far into such a spiral.

One positive thing that I was thinking about was that you say you're very good at creative writing. While holding down a regular job with regular hours might be something very difficult for you in the future, you may well be able to work far more easily from home doing that than something else. You could look into various journalism options or writing creatively (as in short stories, novels, reference books...). I know that it is not easy and that it can be hard to break into the field but it is, at least, something that might be very accessible to you.

Hope you have a great birthday tomorrow!!!!!

sending loads of hugs and positive vibes
:hug: :grouphug2:

Katharine

 

[LolaLola]

Hello Applesauce, At least I was still fit when I was 19, for which I am very grateful. My 18 year old Daughter Immi has SLE APS and a heart murmur. She would understand how you feel. She doesn't really talk much about being ill and is lucky to have some good friends. She does find it hard sometimes though.
I can understand why you want to stay at College, but please make sure you have every support you can get.
x Lola

 

[onetay]

applesauce,
It sounds like you are having a real run of emotions right now. You might want to consider getting an anti-depressant that might help with the emotions going up and down. You were very young when you got dx and you are right about not being able to understand what all that goes with it. I think it would help you to think about what you want to do instead of that half of your life you have had lupus. You said you are good at creative writing so find out what you can do free lansing, any of your teacher can help you in that area and you can kinda work at you own pace. You could do anything that handles writing. If your friends have been with you so far it is most likely that most will not be going anywhere soon. You also have the site when you need it. I don't believe that anyone here will think less of you for popping in and out of here. It is a matter of taking one day at a time that is all we can do. I also hope you are doing well and feeling well.

 

[pollianna]

I feel bad making them deal with it when they also have their own work to be doing and their own things to deal with. I know that if I had to deal with another one of me, I'd be exhausted and wouldn't really want to be around myself very much.

That's your fatigue talking applesauce. It's tough being tired on such a deep level but all part of the process.

Hope you have a wonderful birthday :wink2:

P xx

 

[elle-co]

(((Applesauce)))

I can't really add to the great advice already given. I just wanted to say that I think you are a very brave person who has had so much to deal with from such a young age, yet seems determined to live life to the full. My only advice would be don't be so hard on yourself when you need to rest, and dont ever worry about only coming on here when you feel bad. the good days should be enjoying living life to the full.

I hope you have a wonderful birthday tomorrow.

Hugs
Elle X

 

[Bobby]

Applesauce,

My only advice to you is...have an absolutely wonderful birthday.

Sweetie, I'm nearly 50 and they put up with my whingeing on this site so I've no doubt you're a refreshing change from old mother time. I think I still have knickers (that's panties for my American friends) your age.

Have some fun, a massage, do some of what teenagers do with their friends, and most of all, we're here for you always.

:hapbirth: :bday:

 

[keebler]

(((Applesauce)))

It been a long time since we have chatted.
That first year of college is a rough one. With all the adjustments with friends, food, studies etc. Plus you have to deal with lupus too.:worried:

My daughter went threw a lot of adjustments her first year of college. (she doesn't have lupus) College is a whole other world from which you grew up in.

I have known young adults that have changed their major several times. It is a hard decision t to figure out. Don't be so hard on yourself.

It sounds like your friends are wonderful and supportive.
Talk to your adviser and see what the two of you can come up with.

Take care of yourself.
Love,
Lyn