View Full Version : I have wolfs!
12-26-2007, 05:26 AM
Hahahaha! Do you guys know that lupus actually means wolf in latin? So interesting right? I was wondering, lupus, what does it actually means?
Okay. I shall start about myself. My name is Rayhanah and I am 16 next year (2008). Why am I here? Hehe. Well, I was looking around for a site about lupus and then I stumble into this site and I am so glad that there is such things as a lupus forum.
I still remember when I was 13 and was diagnosed with lupus. I do not know what lupus was. I have never heard of it. Still, I was siting at the hospital bed and thinking that I will be fine. Went I go back to school, I had to quit my uniform club and joined another club. I couldn't tell my friends what had happened to me because I don't even know what was happening to me. I just told them that my one week stay in hospital was due to high fever.
I take steroids and plaquenil and sometimes experience joint pains especially at my leg area. And then all of a sudden, my paedatrician gets all serious and start telling me that my lupus has started to attack my kidney. And then she send me to wait outside the room. I still remembered that I was so scared that I just cried infront of everyone at the clinic. My dad comfort me saying that it'll be okay.
I went for biopsy and they found out that I had lupus nephritis class III. I was sent to cyclophosmaside, but after 7 times of the same treatment, my doctor found out that there was still protein in my urine. She then changed it to mycophenolate mofetil, which I am taking now.
Recently, my grandmother, who suffers from diabetes and high blood pressure, had kidney failure. She had to undergo dialysis. At around the same time, our family was thinking of going to visit my mum's family at another country. I told them that I can cut my medicines and we can visit the doctor next year, because visits to the clinic is very expensive and my medicines is not subsidised. But because of what happened to my grandmother, my dad became scared and cancelled the whole trip.
I was disappointed that we could not go on the trip this year as it was also cancelled last year. Sometimes, I envy my friends who do not have diseases and remind them to take care of their health properly. Because when diseases come, you sometimes don't even realise it.
Thank You for reading these.
sick n tired
12-26-2007, 10:49 AM
Welcome to this site. Yes I had heard that Lupus meant wolf. Wierd, right?
I do not have discoid lupus, but I expect that people with that kind understand where it got it's name.
I am sorry that you did not get to go on your trip, but am glad that you are doing better. Your dad was right to not cut your meds. I hope that your grandmother gets better.
Blessings to you,
12-26-2007, 05:29 PM
Hi, Rayhanah - glad you found us. You're dealing with a lot for someone your age. Sounds like you have a very supportive family, and that's so important! Your wise to know that you can't take your health for granted - we never know when it might change. But, it can change for the better, too, sometimes. And if it does, maybe you and your family can take that trip. I hope so. Stop by often - you'll always find something new here!
12-26-2007, 10:16 PM
Yes, I found out after being diagnosed what the wolf stood for. You sound very brave and grownup for your age. I can't imagine fighting this disease at 13 years old. I am sorry you missed your trip; but your Dad has your best interest at heart. We love our children; they are our first consideration. Your Dad doesn't want to see you sick or in the hospital with a setback because of not taking your meds. Your Dad loves you very much!!!!
I take Plaquenil and sterioid injections (Kenalog) for the joint pain. Maybe next year, when your in remission, you can make the trip. You are right though, everyone should take very good care of their health because none of us never know when an illness will strike.
12-28-2007, 12:38 PM
Thank You So Much for all your support! Honestly, I feel so relieved because when I am here, people actually know what I'm talking about. They know what lupus is, what mmf is, how the disease is treated and bla bla bla. But in school, when I try to talk to my friends, they don't know what I'm talking about, they don't understand, and after a while, I just don't talk about it anymore. Sounds pretty sad right? When I am at school for 5 days in a week. Well, life is like this and there are trillions out there that had not heard of lupus before. We can't say that they are ignorant and all, we just have to be patient and try to explain it to them, or just live with it.
Hey! Keep those comments coming! As a teenager, I am quite worried about one thing; I read somewhere that steroids can actually increase sexual perversion. This is scary isn't it? I do not want to be a woman who can't be satiesfied by a decent man. Please tell me what do you think and it will be deeply appreciated.
Thank you so much! Terima Kasih! Nandri! Sesshei Ni! Arigatou Gozaimas! Kasahamida!
12-28-2007, 02:19 PM
Welcome to the forum, I'm glad you've joined us.
As far as I know, sexual orientation is not determined by medications. If you are heterosexual, the steroids will not change that, you will remain attracted to men rather than women.
There are medications that may reduce sexual desire (regardless of your orientation), but I do not know if steroids have that effect.
12-28-2007, 02:33 PM
Welcome to our family. You've already seen how kind, understanding and informative our members can be. Most of us learned about the "Wolf" early in our diagnosis. It happened because many said that the butterfly rash resembled a wolf bite :lol:
There are different types of steroids: Anabolic steroids are the types that athletes take to "up" their game, so to speak. Anabolic steroids were developed in the late 1930s primarily to treat hypogonadism, a condition in which the testes do not produce sufficient testosterone for normal growth, development, and sexual functioning. The primary medical uses of these compounds are to treat delayed puberty, some types of impotence, and wasting of the body caused by HIV infection or other diseases. They DO NOT change your sexual preference. They can cause a wide range of adverse side effects ranging from some that are physically unattractive, such as acne and breast development in men, to others that are life threatening. Most of the effects are reversible if the abuser stops taking the drug, but some can be permanent. In addition to the physical effects, anabolic steroids can also cause increased irritability and aggression which could make a person with sexual perversions more aggressive about those perversions. But they DO NOT cause sexual perversions.
Some of the health consequences that can occur in both males and females include liver cancer, heart attacks, and elevated cholesterol levels. In addition to this, steroid use among adolescents may prematurely stop the lengthening of bones resulting in stunted growth.
People who inject steroids also run the risk of contracting or transmitting hepatitis or HIV. Some steroid abusers experience withdrawal symptoms when they stop taking the drug. These withdrawal symptoms include mood swings, fatigue, restlessness, loss of appetite, insomnia, reduced sex drive, and depression. This depression can lead to suicide attempts, and if left untreated, can persist for a year or more after the abuser stops taking the drugs.
Now, the type of steroids that we take are called Corticosteroids. These are nothing at all like Anabolic Steroids. Corticosteroids are a class of steroid hormones that are produced in the adrenal cortex. Corticosteroids are involved in a wide range of physiologic systems such as stress response, immune response and regulation of inflammation, carbohydrate metabolism, protein catabolism, blood electrolyte levels, and behavior.
We take these steroids because they have anti-inflammatory agents and inflammation is one of the biggest culprits in Lupus. They lessen swelling, redness, itching, and allergic reactions in our diseases. The most common Corticosteroid that we take is Prednisone and I imagine that is probably what you are taking.
If you have any questions about your medications, you may ask us and we will help you in any way that we can. Also, ask your doctor exactly what your medications are for and what is the hoped for result of the medication and when can you expect to see those results. In the meantime, welcome to our family! We are glad that you joined us.
Peace and Blessings
12-31-2007, 11:54 PM
Thank You so much everyone for the info. Am I glad that the steroids that I'm taking does not cause sexual perversion. Yes, I do take Prednisolone. Well, it's not that I don't want to ask my doctor but I'm a bit scared. Hehe.
So does this mean that I can still grow in height?? I do not want to be short. Well, nobody does right? Anyway, about the lupus means wolf in latin, I seriously do not know about it at all for 2 years until recently. To me, lupus sounds weird and I have never heard it anywhere before.
Anyway, do you guys know that my relatives think that I am normal?? That my chubbiness is because I eat a lot? Well, that's what my parents tell them. My parents do not want them to know, because it will spread like forest fire.
So yeah, I'm leading a 'normal' life in the eyes of people around me. Even me being short is not an issue to them, because my mum IS shorter than me! Hahahaha.
But I do get irritated when people say that they are having pains here and there and bla bla bla and that they have some sort of sickness. When I ask them what sick is that, they say it is something from the inside. All fake! Sometimes people who don't have diseases go around saying that they are sick, they seriously don't know what people like us are experiencing.
Sometimes, I just feel like telling them: "Hello! I have lupus! And now it affects my kidney and in two years I have been to the hospital for almost 10 times!" But I just kept them inside my heart. Eventhough they knew about my condition, they can't do anything, can they?
01-02-2008, 08:25 AM
Well, yes, they can do something. They can give you support, they can give you comfort, they can give you understanding. If you feel that they are capable of giving these things, then it might be beneficial for you to tell them. If you feel that they are incapable of giving these things, then you have to decide weather or not you want them to know.
Making this decision to tell them or not is not for their benefit, it is for yours. Will it relieve some of the stress that you feel if you told them? If so, then tell them and let them deal with how they feel about it. If it causes you stress (something that is dangerous for us because it can exacerbate our disease, cause flares and make our flares last longer) to have to hold it inside, then I suggest that you yell it to the world and, so, eliminate that stress!
Whatever you decide, we are here for you. Come to us to eliminate that stress and we will always be here to help you as best as we can.
Peace and Blessings
01-05-2008, 06:08 AM
Thank you saysusie for the idea. Well, it's not that I don't want to tell them, but my parents don't want to, so there's nothing that I can do about it. Haha.
01-05-2008, 11:13 AM
Would it help if you explained to your parents how keeping this a secret is affecting you? Perhaps they should understand how stress can make this illness much worse than it need be. Do you think your parents are open enough to listen to you?
It is just as important for your parents to be as educated and informed about Lupus as you are. If you like, we can suggest some books etc. that will help them to understand this disease. Let us know how we can help you.
Peace and Blessings