View Full Version : Band Camp

08-02-2009, 06:58 PM
Im a little frustrated. I reminded my mom before I went to my dads that I had band camp, and that I'd be needing alot of food that I could bring with me for lunch and stuff. And she completely forgot and now we're trying to find food for me to bring tomorrow. Urg.

Im going to have a bag of things with me, just in case I need anything special. lol and Im going to let everyone know that I might need breaks cuz of my knees and stuff. Soo Im hoping it goes well. I wasnt really too worried about it until about a half hour ago. Ugh. I hope everything goes ok.

08-02-2009, 07:03 PM
AWWWW, Ritzbit, YOU will be FINE hun.:cute: Just do as you said and let them KNOW that you WILL NEED breaks when your body tells you so. Its all about communication. Im sure you will find enough food for your your tummy tonight around the house and if not,then im sure others will be more than happy to share some. It always seems that others come with MORE than they eat anyways. YOU'LL be OK SWEETIE. Ill be thinking of you:yes:

08-03-2009, 04:17 PM
Have a great time at camp. It will all work out.


08-04-2009, 05:22 PM
Yesterday sucked becuz we were outside ALL DAY. and i earned the name lotion lady lol and have alot of comments on my gloves that I wear.

It hasnt been too bad but yesterday i didnt hardly get to sit even after i got home from practicing becuz i had to eat shower shop for wedding dresses and go to the store with my mom. its quite tiring.

Its been alot of fun though =) and so far i've only had a big problem with my knees and hands. My hands are always swollen and twirling a flag doesnt help very much.

Only 3 more days lol ugh

08-04-2009, 05:33 PM
Hey rizbit,

Im sure everything will be fine get plenty of rest tonight. What time do you have to go to band camp? You guys can get food before you go?? Just a thought anyway... Have fun.


08-04-2009, 05:37 PM
It started yesterday and its from 9-5 everyday this week. Me and my mom finally got some food at like 9 last night. i was dead tired walking around the store lol

08-04-2009, 06:19 PM
lol, u are so funny. Im glad u got food because Im one evil B*%$ when I havent eaten.


08-05-2009, 02:49 PM
So am i lol I eat quite alot lately it seems. I had alot of food today for lunch it was crazy lol

08-05-2009, 02:53 PM
I felt like such crap all morning. I was all swollen and just couldnt get up. It sucked. I pretty much sat down doing nothing til lunch. I started feeling better around 1 but it was ridiculous. I had to explain over and over again why I didnt feel good. and why I get sick. and that yes I am on alot of medicine for it and no they dont always seem to make me feel any better at all. Im going to take a LONG nap. Im drained

Angel Oliver
08-05-2009, 03:32 PM
Oh you poor thing.You just rest,ignore the comments.Relax when you can.
Thinking of you
Love Amanda.xxxxxx

08-05-2009, 06:44 PM
Thanks I plan to just sit down whenever I need to. I dont want to make myself feel any worse

Angel Oliver
08-05-2009, 06:55 PM
im glad cause you'll feel it if you do too much.

LOve amanda.xx

08-07-2009, 08:04 PM
i felt so much better the past few days =) today was the last day and we had our performance and we had a big dinner and this one kid threw a party and I saw one of my friends who I havent seen in a really long time =D I had such a good day.

I just got home from the party and I am soo tired lol so Im going to go get some rest and Im going to sleep in for the first time all week! lol

08-08-2009, 06:30 PM
How wonderful to hear that all went well, that you enjoyed yourself, that you re-connected with a friend and that you are happy! Get some rest now and know that we are also very happy for you!

Peace and Blessings

08-09-2009, 11:25 AM
Im feeling so much better now that Im not up on my feet all day. I got a book about lupus the other day. its a good read. Its alot more helpful then reading the same things over and over again on the internet

08-09-2009, 11:52 AM
Get some rest and I hope you are feeling better the next time you post!

08-09-2009, 02:12 PM
Im feeling much better today =) Im looking at colleges at the moment becuz Im really bored and need motivation to get some school work done lol

08-09-2009, 06:19 PM
I am so happy you made it through band camp!!!!!! I went to band camp one year and loved it so much! Our was an overnight camp and spending all that time with my friends was like a big slumber party :veryhappy: I am just happy that over the week your comments got happier and happier and I am just happy you were able to enjoy it. It is tough when you have limitations but you can do everything everyone else does as long as you listen to your body when it tells you that you need a break. I am proud of you!!!!!! Get lots of rest and enjoy a few days of relaxations. I also have read a few books on Lupus and it has been nice to have them in my personal library for references over the year. How is the job going love??????? I have been thinking about you and your job over the last few days! I am sending you lots of happy thoughts and gentle hugs to let you know I am thinking of you :hug:

08-09-2009, 07:17 PM
I had an awesome time at band camp lol I loved every minute of it. I've been reading bits and pieces of it and I find it is alot better than websites. And Im also reading a very good book by Amy Tan called the Joy Luck Club. Its very good so far.

And the lady from McDonalds hasnt called me back yet to tell me when I start yet =( Im calling up there before I go to Childrens in the morning. My friend who works there asked if they had my uniform in yet and she said she had my number out and everything like she was getting ready to call me today but she never did soooo Im going to have to call up there I guess lol

Im really hoping my doctor tells me Im doing ok enough to start taking me off the prednisone tomorrow. Im worried she wont when she sees how swollen I look after band camp lol I think I'd be ok taking it down some though. I guess we'll see. And Im hoping she does something about my hands this time becuz I told her last time I was concerned about the tip of my finger maybe having another ulcer and she just said to keep an eye on it and well now its back =/ So Im not sure what shes going to do about that.

I'll get on tomorrow after my appointment =) hope it goes the way I want it to lol ugh

08-10-2009, 08:27 AM
When you are done with the book you should rent the movie. It is a beautiful story and I enjoyed the movie also :veryhappy:

I think you should call the lady at McDonald's and see what is going on. The sooner you start, the better you are going to feel but it is good you are able to rest a bit after band camp! I am so happy you already have a friend working there!!!!! That will make it so much more fun!

I will think about you all day until I hear about your appointment. I will hold out hope that you will get some good news. I have faith that is what you will receive. Just hang in there and do what the doctor says. It will make you feel better in the long run!

I am sending you lots of positive thoughts and hugs to get you through the next day :hug:

08-10-2009, 01:15 PM
I've already seen the movie which is why I wanted to read the book for my school project becuz Im in love with it. Once Im done reading the book I've probably watch the movie again lol

I was going to call today but was stressed and everything about my appointment and completely forgot. And they still havent called today so Im calling up there bright and early tomorrow to see whats going on.

My appointment sucked. I really dont like my doctor. She accuses me everytime of not taking my meds and always asks if my mom actually like hands me my meds and watches me take them and Im like, Im 16. Im pretty sure I should be trusted to take my meds especially when I want to get better and get off as many of them as I can.

But instead of getting my prednisone lowered like I thought Im on another pill now. She's putting me on Cellcept. And Im not happy about it. She says that with this medicine that the amount I'll be on is normal but it seems like alot. Shes starting me on 250 mg twice a day then I have to add more and more each week until Im taking 4 in the morning and 4 at night. 1000 mg a day seems like an awful lot. I will be taking 17 pills a day in a month or so. And I thought they were going to start taking me off some of my medicine. Im really angry. And really frustrated. ugh


08-10-2009, 04:56 PM
((((hugs))))) Hey sweetie...just now catching up with posts and saw this and am feeling sad with you. That's unprofessional of your doctor to accuse you like that.

It stinks when you have to wrestle with the person who is supposed to be focused on making you feel better. I'm sorry you have to to take more medications. I know it bums you out but maybe it will be worth it later?

08-10-2009, 07:10 PM
I like my other doctor alot better. She doesnt piss me off so much everytime I talk to her.

This medicine better be worth it. becuz I am really not even wanting to start it. I HATE PILLS! 17 a day is a bit too much. Seems pretty ridiculous. Apparently whatever is wrong with my finger isn't related to my raynauds. If the medicine doesnt help it they're going to have to do more tests like a skin biopsy or something else. Its one of three things, clots in my finger, an inflammed blood vessle, or something else I cant even remember. Ugh. Im just really frustrated. Like I seriously just about cried when she said she was going to be putting me on more meds. And ones that are probably going to upset my already sensitive stomach. =/ is just hasnt been a good day

08-11-2009, 06:36 PM
I take Cellcept too! I am actually on 3000mg a day right now because of the lupus attacking my kidneys! I know taking all those pills stinks. You may want to talk to the doctor so once you are up to the max dose she wants you on they could give you 500mg tabs instead of 250mg ones so you can take less pills. You just have to start on the 250mg caps so you can gradually increase your dosage!

I understand what you mean about taking all those pills! I feel the same way. I feel like everytime I turn around I'm taking more...ugg! When I was diagnosed at 11 I only took a few pills....as I've gotten older (30 now...yikes) I seem to be adding! But that is not to discourage you because I know once my flare is under control the number of meds will decrease. And I'm sure the same will go for you!

Hang in there my dear! And you'll do fine on the cellcept....at least give it a try and see if it helps you!


08-11-2009, 07:00 PM
Im only 16 and I've only known about all this for a few months. And its all just too much. With school and friends and getting a job and thinking about colleges already and trying to figure out what I want to do with my life, and now I worry about all this too. and Im just sick of it already. and I have the whole rest of my life to have to deal with it. i hate it. I dont want to deal with any of it anymore. Im not good at handling stress at all and I am just SOOOOOOOOOOO stressed out lately. about the smallest things even. if its not one thing its another. and now more pills and more things to worry about the week before school starts. and they messed up like my whole schedule and Im worrying about that becuz I dont think theyre going to be able to fix it and its just like Im about to pull my hair out.

08-11-2009, 09:47 PM
Oh sweetie. You're so stressed. Relax, take a deep breath and relax or you're gonna feel that stress physically.

You do have a full plate and then some right now. Maybe the job could wait till later? Is that a possibility?

Is there any way you can lighten the load just for now because right now, your body is in need of serious care. Stress is only going to make things worse for you. You don't need to be so stressed out.

08-12-2009, 01:02 PM
You definitely need to try and stay relaxed! Stress is no good for you. I know it seems rough to deal with. Remember I've lived with this disease for 19 years now.....I started getting sick at age 10. It's been a battle but you will get through this. You will have good days and you will have bad days. Take advantage of the good days and remember to rest when you can. Trying to overcome everything at once will only stress you out more. Take one day and one thing at a time! You will find that it will fall in line and you will accomplish all of your goals for school and a social life. You just have to give it a chance to fall into place. You also have to accept that you will have bad days and that's okay! We are allowed those! And at your age remember that if you have friends that don't understand....then they are not your friends! You will find that no mater what age you are in life!

Please feel free to PM me any time if you have any particular questions. I've learned how to grow up with this disease through grade school, high school, college and now! I'm always here if you need to talk!

08-12-2009, 01:46 PM
I just dont know what to do. I want to eventually go to medical school. so Im taking all advanced and honors and AP clases and college classes and alot of science classes. and I need all them to do what it is Im wanting to do. And my school is ridiculous and cant fit like anything into my schedule right becuz the classes overlap. and I dont know what Im going to do if they cant work it out becuz its goind to mess up my schedule for next year too.

And I need my job becuz I need to get a car and Im going to have to buy it myself becuz my mom is never going to be able to afford getting me one unless I at least help pay for most of it. And then there's car insurance. I just feel like I need to start really helping out pay for my own things becuz between all my meds and appointments and school and a new bed they just got me and other things my parents spend so much money on me. And I have 3 brothers. And my dad cant help all that much becuz he isnt made of money either and he has to take care of my 2 sisters.

I just have alot on my mind and I just am about to pop. Nothing is ever simple I swear.

08-13-2009, 10:16 AM
You're right...nothing is ever simple. But sometimes, if it's a matter of our health, we have to narrow things down so there's not too much on our plates. I know you want to help your parents, but I have a feeling your mom wouldn't want you pushing yourself so hard. Not meaning to add more stress, but think about what the stress will add to your life. Stress is a major trigger.

Butterfly makes very good points. That was an excellent post.

I don't know if it helps but...I've got a daughter about to turn 18, and she doesn't have the same things to face in life as you have, but she has her own platter as we all do. She keeps looking at all of it at one time and it overwhelms her and stresses her out...same as it does me sometimes too. She's trying to learn not to do that so much and when she does that she'll relax and just slow down her thinking. Imagine hiking up a huge mountain and getting tired on the way up. If you look and see how far you have to go, it can make you feel even more tired. Just keep looking at the trail and the scenery on the way. Stop and sit down and rest when you need to. You'll get there. Relax. Enjoy as much as you can. (((((Hugs))))

08-13-2009, 10:20 AM
Thank you =) I've been trying to relax as much as I can. I've been feeling better today

08-13-2009, 03:40 PM
I agree with abbasgirl! Your ,mom is not going to want you to push yourself. Has your mom looked into disability for you? When I was younger I at least qualified for a medical card in addition to my father's insurance so that helped with the medical bills. Just something you and your mom may want to look into.

Keep your head up and just take it one day at a time. I believe you will be able to make it though med school if that is what you want. But you need to learn about your body and learn your limitations. Learn when enough is enough because when you just push and push yourself you won't do yourself any good.

08-14-2009, 08:37 AM
How does that even work and could I even get anything like that?

Im hoping I'll be able to handle all that. I can barely handle what Im doing now lol

08-14-2009, 10:48 AM
Have your mom look into what the state of Kentucky requires for disability. You will have to provide all your medical records to them to review your case. Disability can be a long process and you may have to apply multiple times until they agree to give it to you. But it is an option. Your mom will also have to submit financial records to them.

08-15-2009, 07:32 AM
Ah. I'll tell her about that.

I feel like crap I've been sick and throwing up since yesterday. Whatever my little brothers all had a week ago they've given it to me and I feel extra super crappy. My head was KILLING me yesterday and I couldnt even take medicine for it becuz I threw it all up. I was excited that I ate a few crackers last night lol ugh Im feeling a little better right now though. My headache is gone!

08-15-2009, 10:56 AM
Oh sweetie...so sorry you had the throw ups. ((((Hugs))))

Butterfly, that is an awesome option! Wow!

08-15-2009, 11:02 AM
So far I've kept everything down today =)

I dont even know how disability works. Isnt that what you get when you cant work? My aunt got disability for awhile after she had a heart attack.

08-15-2009, 11:11 AM
You are right that disability is for those that can't work (adults) but children qualify too. They look at the financial records of your parents. Some qualify for what is called SSI (social security insurance) where they get a little money each month but that depends on your parents income. Mine made too much to get SSI but I did qualify for a medical card (medicaid) through the state. Let your Mom do the work on that end but it is something to look into!

Sorry that you are not feeling well. Have you been in contact with the doctor? I would call. You don't want to get dehydrated at all! Also being on cellcept will lower your immune system. Don't let any kind of infection or cold or flu prevent you from calling your doctor.

Feel better soon!

08-15-2009, 11:26 AM
Ah me and my mom didnt know that. Im sure she'll be looking into it.

Im feelin pretty good today. I've been drinking alot of coke (ewww) cuz its the only thing I've been able to keep down. I couldnt even drink water yesterday, which made no sense at all.