a little overwhelming...
Hello, my name is Alanah, and i'm seventeen.
My mother was diagnosed with lupus about sixteen years ago. Earlier this year i started showing signs of raynaud's phenomenom, and didn't think much of it. I discovered what it was and what it was a sign of this summer. I told my mother and she told me that it was definitely not good, that i'm already a good candidate for lupus. Around september i started having pain in my wrists and hands, it started off minor, then i just started losing mobility in them, they hurt to move and were incredibly stiff. However, this was around the time that my mom's lupus was just off the charts. She was completely dependent on us and she was our number one priority, so i didnt tell them what was going on. Now that she is doing a lot better, i'm continuing to not feel good, she's noticed, and has said that we should get me checked out soon, but thats been said before. I'm constantly uncomfortable, and it's taking a toll on me emotionally too. I stumbled upon this site and just reading the replies to others' posts made me feel not so alone. we still dont have an appointment set up yet, despite the times ive told my mom how awful i feel. i dont know if she's afraid of what we might find out and is putting it off, or what. personally, i just dont want to be in pain anymore, but its never that easy...
I'm sorry that you are going through this. It is awful to have to face the prospect of serious illness when you have your whole life ahead of you and just want to enjoy it.
I'm newly diagnosed so I do not have a lot of practical advice to offer but I REALLY understand lupus fog so I might be able to offer some insight into your mother's response if her body reacts to lupus the way mine does. I may be dead wrong so accept my appologies before hand because this is an uncomfortable subject for me.
Long before I found out about my lupus I started having periods of time when my thinking was not as clear as usual and it was harder to cope with life. When I was really sick I blamed it on the pain but there were other times when the flares were mild and it made no sense at all. I often did not even realise it was happening at the time it was going on and other people could not tell.
When I was feeling like that it was hard to confront difficult situations head on because I could not think clearly so I often put off important decisions. The end result being some serious error in judgement.
Added to that is the fact that stress can make me flare and even before I knew about the lupus I sensed that I was sicker when I dealt with difficult issues. On a subconcious level I began to avoid dealing with stress to avoid the symptoms that always followed.
I guess I took a real Scarlett O'Hara "I'll think about it tomorrow"
I am sure your mother doesn't want you to continue to suffer but she may need you to push her to get you into see a doctor. If your mother was the first person in your family to be diagnosed with lupus there was probably a long frustrating struggle to find a diagnosis that was both humiliating and demoralising. It will be easier for you to get an accurate diagnosis but I would imagine that in the back of her mind she is dealing with those memories as well. And yes, I am 100% sure she does not want you to have this and the idea is hard to think about.
And there is the possibility that she needs you to be more vocal about your pain because many times when a mother is ill she will worry about projecting her illness onto her children. That can make her go too far in the opposite direction. If you are covering up your symptoms to protect her the combination could be sending your mom mixed signals.
If you don't push her to get you to a doctor, you will be hurting both her and yourself. The reason I am saying that is if you do have lupus and you wait to be seen she will end up living with the guilt of not having gotten you to the doctor as soon as possible. Just remember, to do it gently before you end up so frustrated you lose your temper. Just keep asking her everyday until something is done about making an appointment.
BTW... Don't get freaked out about the lupus fog thing I am not saying you become totally disfunctional with it. It's just hard to focus at times and that makes the decision making process difficult.
Hi alanah - welcome!
You're among a group of people who offer each other shared wisdom, shared hope, links to important information, and lots of cyber hugs.
Thank you for your wonderfully helpfulf reply pj. after posting i told my mom again that i wanted to get checked out, and she told me she was sure it was simply growing pains. It hurt to hear her think that i was complaining more about my pain than was necessary. However, i remained firm and told her that i was sure it wasnt something as minor as growing pains. She agreed to call today, but it slipped her mind. I am going to follow your advice and continue to remind her everyday until she finally gets me help. Thank you for your support. =)
Hi Alanah-hope :lol:
I agree with PJ in that your mother's hesitation may be due to several things, all of which DO NOT include her not wanting to help you. As a mother with Lupus who had a daughter with Lupus, my biggest hurdle was the fact that her Lupus was SO different from mine and I truly did not recognize her symptoms. She was very ill by the time that I felt that her doctors should test her for Lupus.
This disease affects all of us so differently and your mother may be thinking that you do not have Lupus because your symptoms are different from hers. Also, your mother DOES NOT want you to have Lupus. So, when she says that it is just growing pains, these are her hopes that she is expressing. She is not dismissing you, she is honestly hoping that you are only experiencing growing pains and that you do not have Lupus.
Do continue to insist that she call for an appointment so that you can get started on the tests. Bear in mind that even then, it could take up to a year before you get a definite diagnosis. So, during the diagnostic process, you will also have to insist that you be treated for your symptoms so that you can get some relief and hopefully prevent new symptoms from appearing.
Think about have a talk with your mother and tell you how you need her support, understanding, and help now...just as she needed yours when she was in her worst flare. Because you love her, you were there for her. You need her to believe you now and to be there for you now so that the two of you can continue to support one another, learn from one another and work together to be able to manage both of your illnesses.
In the meantime, we are here to give you information, answers, support, understanding and comfort. We are here for you and your mother. You are not alone!
Peace and Blessings