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View Full Version : diagnosed with SLE - still in denial



xuan28
01-18-2007, 08:30 AM
i was suspected of having lupus SLE sometime last Apr, when I was 7 months pregnant and there were large amounts of protein detected in my urine during my routine checkups. to avoid complications, my baby was delivered at 34 weeks through c-section. as my baby was premature and very small, she had to stay in the NICU for a month! it was a difficult time for me, not being able to carry and care for her.

after my delivery, i went for more tests, and even a kidney biopsy. in aug 06, i was formally diagnosed with lupus SLE.
i was put on medication prednisolone, myfortic and approvel.
i HATE the effects prednisolone had on me. i was already desparately trying to gain back my pre-pregnancy figure, but prednisolone made me look puffy, bloated, and i had people commenting that 5-6 months after delivery, i still looked like i was 5 months pregnant.

i urged my doctor to take me off prednisolone as soon as possible. and thankfully, i am now off prednisolone and just taking myfortic and approvel.

i HATE this disease. i HATE popping pills everyday. i HATE that i have become 'handicapped'. i HATE that i am not 'normal' anymore. i HATE how i spend all my hard-earned money on doc's fees and medication.

i am still young (in my 20s). why did this happen to me?

in the last 2 months, i haven't been taking my medication regularly. sometimes i forget. sometimes i just don't want to take it.

i am new to this website and i know i need to help myself to adjust to this change. i hope that by reading more about this disease, and how others cope with it, i can help myself to face up to reality and overcome my emotions.

thank you to all who are sharing their story. i have much to learn.

Kokopelli
01-18-2007, 02:33 PM
Hi Xaun. I'm so sorry that you have so much deal with all at once! First off, no, I don't have the disease so I don't know first hand what you are going through. I can say that getting news of an illness like this can certainly knock the wind out of your sails!

My mom's Lupus specialist always told her that her attitude would do more for her then anything. She let herself be very angry, depressed and worried for herself a little, but then she just decided one day that it wasn't going to get her. She was in her late 20's or early 30's when she was diagnosed. She is now 60. It's just been in the last few years where things have gotten really hard for her, and the big things weren't Lupus related! She got a staph infection that almost killed her and it weakened her so much.

She did several rounds of high doses of prednisone and when her kidneys started to fail, she was on chemotherapy and a laundry list of medications. I wish I could tell you that your life wasn't going to change and it was going to go away, but it wouldn't be true or realistic...and we all know that reality bites!

What I can tell you, is that even though you HATE taking the meds, and you hate spending your money on your meds. Try to find a new perspective for them and make them part of your everyday routine. Missing a day here and there may not seem like much, but it can be. Lupus is vicious, don't give it the opportunity to find a vulnerability! Find a way to make your medications a very small part of your day, but make it part of each day. Sometimes you will be on more medications then others and you want to do what you can to help it go into remission. Remember, Lupus THRIVES on stress...and by using so much energy to HATE what is happening.....well it creates a lot of stress.

Hang on to the people who love you, yell when you need to, but be good to yourself and don't let Lupus control you....you learn how to control it!! Find the positive in every day and the joy in the simplist things and love that baby!!

Best wishes and I hope I didn't overstep my bounds.
Melissa

Saysusie
01-19-2007, 09:45 AM
Hi Xuan;
Melissa has given you some excellent advice!! She is absolutely right about stress creating an environment for Lupus to thrive and to exacerbate! You are going through a normal phase right now, being so young and having to deal with this disease! Being angry about your loss of health and the intrusion into your regular "normal" lifestyle is quite normal. However, it is imperative that you now start doing those things that might help you to acheive some form of remission. The goal of treatment and medication is to avoid/eliminante flare-ups of the disease and to hopefully get you to a state where you can manage the disease and live a relatively normal life. Your anger, stress and skipping medications is doing just the opposite!! Please do not continue to leave that door open for stress-related complications. It is a big enough battle to get back to a reasonable form of good health without causing yourself more harm by allowing stress to weaken your defenses!
Yes, your life has changed. But, I would not say that you have become handicapped. Having Lupus does not automatically put you in a category of disability. You can do many things to, hopefully, ensure that you never reach that point. You WILL have to make some lifestyle changes. Almost all of us here have done so and, as you read the posts on these forums, you may find some that fit you and that you are comfortable with. Ask us any questions that you may have to help you do this, we will be more than willing and happy to help you! But, it is imperative that you do make these changes in order to help your medications do their work and in order to avoid those things that can cause your Lupus to flare and to make you sicker.
It is very important that you continue to take your medications. I know that, having to look at all of those pills everyday and being faced with the fact that you did not have to take these pills a year ago, can make you depressed and angry. But, each medication can be seen as a small step towards feeling better! Each missed medication is like a small step backwards!! Please take your medications, keep track of how they make you feel and discuss this with your doctors so that you can modify them, if need be. There will be times when your doses will have to be increased on some medications, decreased on others or totally eliminated on yet others. But, if you are not taking them and paying attention to your body, you and your doctors will not know if they are helping or not!!
You must decide that you are going to take control of your health as much as you possibly can. You can do everything that you can to make your life, with lupus, as normal as you can. Only you can do that and, as Melissa stated, it starts with your attitude about yourself and the disease.
This is not the end of your life, it is just a change in your life that you will have to pay very close attention to. You will have to make great efforts to take care of you so that you do not allow Lupus to controll you. We are here to help you to do this, we all understand how you feel and what you are going through. But, we want to help you to manage this disease so that you can get as close to "normal" as you possible can!
I wish you the very best
Peace and Blessings
Saysusie

GlassHalfFull
01-19-2007, 10:55 AM
I was diagnosed about the same time and am still coming to terms as well. I'm still working through the denial. All I can say is that it is a daily battle -- not a stage.

I was just wondering, and it's probably none of my business -- but is it possible that on top of everything else you have post-partum depression? Has your Dr looked into that?

xuan28
01-23-2007, 10:50 PM
Thanks for all the encouragement. I really appreciate the care and support of this forum. :)

I am definitely working on changing my attitude to face reality. Trying to be calm and not get too emotional about it. I remind myself everyday to stay positive, that having lupus is not the end of the world.

I just did a followup with my doctor recently and promised my doctor to take my medication everyday faithfully. He told me that if I don't follow my medication, things could get worse, and then I'll have to take even more pills then. I guess that message got into my head.

To keep myself motivated, I've also bought myself a nice pretty journal. I'm going to start taking notes of when I feel sick, what makes me feel sick and my checkup records. On my happier days, I'm going to write to myself encouraging and positive notes to keep going strong. On my unhappy days, I can then look back on it and remind myself to stay positive.

By the way, what's post-partum depression?

Saysusie
01-24-2007, 09:18 AM
The journal is an excellent idea. You will find that, as you get to know your body and how it reacts to certain medications etc., you will be able to make appropriate changes to help you manage your Lupus.
Remember, on those down days, come to us and we will help you get through them. On those good days, come to us and we will help you to celebrate them!!!
We are in your corner :lol:
Stay strong!
Peace and Blessings
Saysusie

MARYCAIN
01-24-2007, 09:35 AM
Xuan, post-partum depression is a kind of depression that can affect women up to a year after a pregnancy or childbirth. Doctors think it may be triggered by the changes in a women's hormones after a pregnancy ends. Unlike the "baby blues" that a lot of women have for a week or two after childbirth, post-partum depression can last for weeks or months, and cause serious problems, including feelings of sadness or anger, feeling constantly irritable or frustrated, lack of energy, crying a lot, sleeping too much or not enough, problems with memory or concentration, and even physical symptoms like chest pain, headaches, and heart palpitations. Sometimes, women's thyroid hormones level drop after giving birth, and this can also cause unusual tiredness and feelings of depression. Of course, many of these symptoms can also be caused by a chronic illness, particularly one like lupus, so it can be hard to tell if depression is contributing to the symptoms. But if your mood has changed a lot since your baby was born, then it might be something you want to talk about with your doctor.