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View Full Version : New here, and i really need support.



lilbitt113
01-08-2008, 02:43 PM
Hi everyone, my name is Liz, and i'm 22 years old (23 in a week). I was diagnosed in September after years of weird sicknesses like mono and meningitis. I've been on medical leave from work since August, and its been really discouraging for me. I'm also a full time student and made it through my first semester w/ lupus (it was TOUGH!!!). What i have been so frustrated with is that every time i feel like i'm getting better i get really excited and start to do a lot of work, and then i get sick again and i'm stuck in bed. I just feel like i'm never going to get better. Right now i'm on plaquenil, flexeril, and lexapro (i had really bad anxiety and was having a tough time dealing with the stress at first, and it really helps keep me even). Anywho, i'm getting really discouraged because 5 months of never feeling good is really starting to weigh on me. I start my new semester in a couple weeks, and even though i know it is unlikely, i would really like to feel good for my schoolwork. Blah.

vw
01-08-2008, 07:44 PM
I feel you. It comes on like a truck like someone slammed the breaks on your life and your just like blah... Just keep your head up the main thing is making sure you are taking the right meds and staying on top of making sure you rest when you need to . Look I am 28yrs old and this all started when I was 26- so I know this can be frustrating. I have to say everyone here is so supportive... Feel better hun...

vw

crystalcandance
01-08-2008, 11:29 PM
hey hun! just wanted to share this quote that someone shared with me not too long ago...I'm starting to live by it each day I strive more and more -no matter how hard this battle is!

" If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all. And so today I STILL HAVE A DREAM! Martin Luther King JR. "

vw
01-09-2008, 06:20 PM
Words to live by... Each day is a sunrise waiting to light your path to glory ... just a me quote !

sick n tired
01-09-2008, 11:58 PM
Hey Liz,

I am quite a bit older than you, but I have some of the same problems. meaning, when I get to feeling better I tend to overdo it. I can imagine how much harder it is for one who is as young and exuberant as yourself. I have 3 daughters in your age range. Two are having lupus like problems. :(

We all have to learn to live by our limitations. My heart goes out to those as young as yourself and even the teens that I have seen on this forum. You might want to get in touch with some of them.

In the meantime, try to conserve when you can especially the rest of this break and then possibly you can start the spring semester with a bang. :)

:) In him,

Karen

luvwine2007
01-10-2008, 10:20 AM
Hey there,

hang in there! It is hard to have to reorganize your life basically. I'm still learning. There's so much I want to do, but I've already learned I will pay for it if I overdo it. But, it is hard to teach yourself new limitations. I've found that keeping myself on a schedule has helped. I stop doing things earlier in the evening even if I feel ok. It has helped a lot. My husband had to force me to rest earlier at first, but now I have made it routine and it helps.

Good luck, and this board is great :)

crystalcandance
01-10-2008, 03:20 PM
really corny - i know! but i was wondering how many of these posts until i'm not a tadpole anymore- figured it out 30 - so this is just to get me ranking lol - i kidd i kidd- hope everyone is having a fantastic day! MOVING ON UP!!! woot woot!

vw
01-10-2008, 07:20 PM
don't feel to bad I am still a little gupy :) :) :)

crystalcandance
01-11-2008, 08:07 AM
lol...thought it was funny...kinda put me in a better mood all day...now that have finally moved on up to little guppy- now i just gotta figure out how many to move on up again lol...

mnjodette
01-12-2008, 01:12 AM
Welcome, Lillbitt! You'll find lots of helpful people here who will share your pain, lend an ear, or whatever you need. Sometimes there's a lot of humor here, too - which I find really great! (Hey, we all need to laugh, right?) You've gotten some good advice - learn to pace yourself and take advantage of the time you can rest. It's a new way of thinking for many of us, but if you rest, avoid stress when you can, take your meds and eat healthy, you'll be better able to manage your lupus. I'm glad you found us - and I hope you're feeling better soon.

(Wait 'til you see some of the other 'animals' you'll become after you're around for a while! :lol: )

hatlady
01-12-2008, 06:04 AM
:roll: other animals? Yeah, like pit bull.... and currently "fierce wolf" ?! :shock:

Lillbit, there's a website that has a story on it that you should read. The story is "The Spoon Theory." The website: www.butyoudontlooksick.com It is about a young woman in college who is living with lupus. You might find it... relevant.

I work at a college, I'm lucky, my lupus is mild and pretty much confined to manageable pain and fatigue. But I see students who have challenges on a regular basis. Talk to the ADA counselor/coordinator at your school. You may need to go to a modified schedule for a bit, so that you can pace yourself and not stress yourself into a flare. The ADA counselor might even be able to help reschedule finals - so that you don't have 2 on one day.

Many hugs, Liz, and welcome to our forum.

joakris
01-12-2008, 08:45 PM
hey girl,
just wanted to say hi! =)

I am only 24yrs old and have been sick for the last 6mths ! so i know the struggle of feeling better and missing friends and going out and all that fun stuff that just seems to be passing by, I know I couldn't tell you where sept. Oct or Nov went, ( it was a blurry of prednizone and weird scary rashes!!!! ) and yet docs still don't know what is wrong with me... i may not have lupus but all the same fun symptoms!

Ya know.... GOD only gives us as much as we can handle... I know this sounds cleche' but we have our whole life ahead to be the best we can be... and that means taking one day at a time and enjoy each to the fullest!

take care and let me know how things are going for ya muah!!

:roll:

tintin28
01-13-2008, 01:24 PM
I am 28 and diagnosed around the same time as you (Aug last year). Things were fluctuating a lot around Nov-Dec, like you were saying, good one day, horrible the next. Things just didn't seem like they were going anywhere.

Then suddenly--2 weeks ago--everything disappeared. The rash--the lowered C3 and C4 complements--all went back into the normal range.

So hang in there--lupus is a funny thing--it came on really suddenly and can disappear just as quickly. Stay on the meds and keep in touch with your doc~!

lilbitt113
01-15-2008, 01:25 AM
Wow, such lovely support! So, the last couple days, i've been experiencing some weird things with what i think is my heart. I've woken up w/ racing heartbeat, or when i'm just sitting down it will feel like my heart beats REALLY HARD and kind of slow for what feels like about 3 times. I did a little research and it sounds like I should tell my doc as heart/lung conditions are common. The other thing is, i was looking at a rundown of pleurisy (sp?) and it is definitely something i have, and i can remember having as far back as 8th grade (i remember because it was the first time it happened in a car with my best friend and her mom). I would say i get the sharp pains about every 3-4 days but they don't really last, and i always thought it was semi-normal (which is funny, because a lot of the weird symtoms of lupus i just generalized as stuff that "just happens", its interesting learning that no, it doesn't happen to everyone, and yes there's a reason for it, haha) anywho, i was just wondering if anyone else experiencing it could give me advice or words of wisdom, since i am a "newbie" not only to this website, but to this whole disease. Thanks!

Saysusie
01-15-2008, 11:14 AM
You are correct, the heart and lungs are frequently affected in people with Lupus. Sometimes, the problmes with these organs can cause a variety of problems, ranging from mild to serious or even life-threatening.
These complications are known as cardiopulmonary (cardio = heart; pulmonary = lung). The primary cause of these problems is the inflammation that Lupus causes.
Some cardio-pulmonary problems that can occur in Lupus are:
* Pericarditis: inflammation of the lining of the heart
* Myocarditis: inflammation of the tissue of the heart
* Coronary vasculitis: inflammation of blood vessels in the heart
* Pleuritis: inflammation of the sac around the lung
* Pulmonary Hypertension: blockage in the arteries of the lungs
* Pneumonitis: inflammation of the lung
* Pulmonary emboli: blood clots in the lung

Lupus can involve all parts of the heart: The Pericardium (the sac surrounding the heart); the Myocardium (the muscle layer of the heart); The Endocardium (the lining of the inside of the heart); and the Coronary arteries that take blood to the heart.
Pericarditis, or inflammation of the sac around the heart, is the most common heart involvement in people with lupus. This condition occurs when antigen-antibody complexes-also known as immune complexes-are made during active lupus and cause inflammation within the pericardium. The symptoms are: Sharp chest pain that can change with changes in your body's position and frequently may be relieved by leaning forward slightly; this chest pain may feel like a heart attack: Shortness of breath.
Pericarditis is usually treated with anti-inflammatory drugs. If anti-inflammatory drug therapy is unsuccessful, doctors may prescribe a brief course of corticosteroid treatment (such as Prednisone).
Sometimes Pericarditis can be due to an infection or to kidney failure. If this is the case, then the treatment is different than if it is due to just your lupus.

Pulmonary Hypertension begins when tiny arteries in your lungs become narrow or blocked. This causes increased resistance to the flow of blood in the lungs, which in turn raises pressure within the pulmonary arteries. As the pressure builds, your heart's lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing the heart muscle to weaken and sometimes to fail completely.
The signs and symptoms of pulmonary hypertension are subtle in the early stages of the disease and may not be apparent for months or even years. As the disease progresses, signs and symptoms become more noticeable. They include:
* Shortness of breath (dyspnea). Initially, you may notice that you're short of breath only when you exert yourself physically, but eventually you may be short of breath most of the time, even when you're at rest.
* Fatigue.
* Dizziness or fainting spells (syncope).
* Chest pressure or pain.
* Swelling (edema) in your ankles, legs and eventually in your abdomen (ascites).
* Bluish color to your lips and skin (cyanosis).
* Racing pulse or heart palpitations.
Pulmonary hypertension resulting directly from another medical problem is called secondary pulmonary hypertension. Lupus is one of the diseases that can cause secondary pulmonary hypertension.

Pleurisy is common in lupus. Up to 60% of all Lupus patients, at some time, suffer from inflammation of the lining of the chest. The symptom is pain - often a 'catching' pain on taking a deep breath. More severe forms of inflammation and pleurisy produce fluid, so-called pleural effusions. Any fluid in the chest takes useful breathing space away, therefore causing shortness of breath. Pleurisy can be detected clinically and on chest X-ray. Fortunately, it usually responds rapidly to a short course of steroids.
The heart and lungs are not the most commonly affected organs in lupus but pericarditis and pleurisy are often extremely distressing. Fortunately they respond well to steroid treatment.
It is probably a good idea that you talk about your symptoms with your doctor so that you and he can determine exactly what the cause of your pain is. Remember, all of these conditions respond well to treatment, but you should begin treatment soon so that your symptoms do not worsen.
I wish you the very best!
Peace and Blessings
Saysusie

MommyKaren
01-16-2008, 05:39 PM
Hi Liz!!

It's nice to meet you. I too attend college. I am starting a semester next week. I only have 4 classes to graduate so, I just want to get it done!!! I know how hard it can be to attend classes while feeling miserable. I found that the spring semester is much easier on me than the fall semester. I hope that you find that to be true for you this semester. I found out the hard way that I can't do too much in the late fall/early winter. I think it's the weather and the stress of the holidays. The spring semester for me starts out kind of crappy but if I hang in there, I usually do much better in the end.

Last spring my white count ended up low after getting bronchitis and getting run down. My dr. wanted me to "wear a mask" to prevent myself from getting sick when I went in public. Try to keep yourself healthy and get enough rest. Do what your doctor tells you, and if you have a day that you feel like you can do a lot, be careful!! I find when I "feel good" I push things and then I pay for it later.

Karen

Hope you are feeling better soon!!!