Scared to grow up sick! (kinda long, sorry!)
Hi, I'm new to this forum however I'm not all that new to Lupus and Fibro! I was diagnosed when I was sixteen (a junior in high school) and now I'm twenty-two! I've been dealing with it for six years and getting along fairly well, however I'm now forced to think about my future with these two diseases. I'm struggling through college right now, and am worried that I'll never finish due to how long and hard I have to study to get a C in an easy class. I'm majoring in psychology, but wonder if I'll ever be of value to any workforce because I get so sick, depressed, and tired. I've already been fired from three different jobs due to my illnesses! I have also been dating this amazing and understanding guy, and now we want to get married the summer of 2007 (I need lots of planning time)! The only thing is, I'm terrified of being the 'sick wife and mother'! He constantly tells me he would never see me that way and thinks I'm the strongest person he knows, however, I don't want to be the one to bring down family trips because I'm too sick, or can't make it to my kids play or soccer game because I can't get out of bed. Most of all I worry that I'll make our kids sick from passing along my bad genes! He even says we can adopt if I'm that scared or if I can't even have kids! Of coarse, I don't want to leave him alone to raise our children by himself. He says we'll just take it as it comes because we're ment to be together, and he couldn't possible love someone like he loves me! We've been dating for five years,and lived together for two, so he knows my illnesses quiet intimately and the issues that it brings. So is he right? Should I not worry about it? Or is there at least a better way to go about it. It's hard for me to plan the wedding when I think about the future. I need advice! I need someone who has been there to tell me what to expect. It breaks my heart to think that I might hinder Adams life because of mine! Help!
Hi...the advice that I can give is based on the fact that I have been sick since I was born, I am 30 years old, I have 5 children ranging in age from 4 to 13, I work in a furniture factory, my first marriage was a total disaster, and now I am married to a wonderful, supportive man....YOU ONLY GET ONE CHANCE TO LIVE...SO DO IT!!! Go and live your life each and every day. If anything, maybe the bad days will make the good ones seem that much sweeter. Don't take anything for granted. Show your boyfriend how much you love and appreciate him by letting him love you and build your lives together. If you can't bend down to smell the roses, then let him bring them to you. Life is what you make it-so don't hide in the closet and risk missing out on anything. It will all work out...this i know. Wishing you all the health, happiness, and love in the world...
As Tbritts says, many of us have lived many, many years with this disease and have given birth to healthy children. Today, most women with lupus can safely become pregnant. With proper medical care you can decrease the risks associated with pregnancy and deliver a normal, healthy baby. To increase the chances of a healthy birth, however, you must carefully plan your pregnancy. Your disease should be under control or in remission before conception takes place. Many lupus patients wonder if their babywill be okay. In most cases, the answer is yes. Babies born to women with lupus have no greater chance of birth defects or mental retardation than do babies born to women without lupus. About 3% of babies born to mothers with lupus will have neonatal lupus. This lupus consists of a temporary rash and abnormal blood counts. Neonatal lupus usually disappears by the time the baby is 3–6 months old and does not recur.
May I suggest that you do some extensive studying about all of the positive outcomes of Lupus when treated properly and appropriate lifestyle changes are made. You can live a relatively normal life for a very long time if these things are done.
Even if you miss a soccer game or dance recital, you will more than make up for it with the love and devotion that you give to your children. They are so much more resilient and understanding than we give them credit for. They will know that mommy loves them more than anything on earth and a missed game or recital will have little to no affect on them! Do not give up on what could be a beautiful future for yourself, your husband to be and do not deny your love, care and nurturing to the children that could be blessed by having you as their mother.
Take care of yourself, do everything that you can to be as healthy as your can and I believe that you can have everything that you want!!
Peace and Blessings
Hi Honey! I understand how you feeling just being a few years older than you (27 years old). I've had lupus since I was 11. I've grown up being sick. I met my husband when I was in college and we got married the summer of 02 when I graduated. At that point I had been in remission for 6 years and was trying to live life pretty normally. 2.5 years after being married I hit my first flare and I am just now getting out of it (slowly). My husband too is a very supportive man. We actually were talking last night during our evening walk and he told me that because I was so healthy when we met/got married he didn't think we would have to deal with me getting sick so soon. He thought it would be years down the road before we had to face a flare. He also said that he frequently thinks what happens if I'm not here, he's always thought about us growing old together. I told him that I may not be feeling well all the time but I don't plan on going anywhere anytime soon. He's got pleanty of years to go with me (good and bad days) Wanting to get pregnant has been one of the many stressors that brought on my flare. Every one of my husbands siblings have had a baby now and because of my flare (especially the lupus nephritis) and being on cytoxan to treat that getting pregnant at this time is not an option. Fertility for me is a question because of the cytoxan. But my doctors are great and are supportive of me getting pregnant down the road when the time is right. But for our first child my husband and I are in the process of adopting. It appears you have a wonderful and supportive man and you should embrace that. I know it is hard but don't ever feel you are holding anyone back. We are given challenges in life by God that we can handle. They may seem so big at the time but in the end you will get through it. And remember mommies without lupus get sick too and sometimes are too sick to get out of bed to make it to a special event. Take life one day at a time and remember that we all have good days and bad days but you'll get through it. Good luck with the wedding planning! Health and Happiness!
Hi honey -
I'm 29 and have been married for 7 1/2 years. I was diagnosed after we were married, and due to my kidney problems, we won't be having kids biologically. We take every decision 1 day at a time, and do hope to adopt a child someday. I think being strong in your relationship without kids and the fact that he already knows what he's "getting into" makes a big difference.
I think it's good not to make assumptions that your life/relationship/family will be like everyone else's, but I also think that overcoming obstacles in together in a healthy way makes for an even stronger relationship than the average person.
I do feel guilty sometimes that my husband won't have a biological child, but you have to deal with your grief and move on. It's worked for us - we're closer than ever.