06-02-2013, 09:38 PM
Hey everyone names Monica. Just recently we found out my mom has Crohn's disease .She's had Lupus for 26yrs now. I never really knew how serious Lupus was. Since i'm the baby in the family (26) they really dont tell me much. I knew my mom was sick but never knew how serious it was. Like I said before now my mom has Crohn's disease and I feel like im going crazy! I feel helpless .She just had her 3rd surgery this month today :(
Thankfully everything came out fine. But doctor says he doesnt know how much more she can take. Because of her Lupus her body is just attacking itself. If there's someone out ther with a similar situation or anyone that can help me out. What should I be doing? What should I expect . Please I feel so alone eventhough I have siblings. Would be grateful to know someone with experience.
Hi Monica. I am so sorry you are in this situation. It is so hard but one of the the things that helps the most is having a supportive family. I know that sounds cliche but it is true.
What you are feeling is normal too. Most people don't realize for a very long time how sick we are because "we don't look sick". It's not your fault you didn't understand how serious it could be, but you are there now that she needs you and that is what matters. The less stress she has the better. The more rest she can get the better. When we are in a flare (or a time where the Lupus is attacking the body) the doctors and medicine do part of the work but we have to do our part and that is to let our body rest. She is lucky that she has you and those that love her to help.
Please ask anything you want. We will try and help you through.
06-03-2013, 09:08 AM
You Mom is very lucky to have you and I applaud you for your willingness to understand her disease and to help her. Tgal has given you some very good advice. I would just add that your Mom's fatigue will be such that you may not understand the gravity of it. It is literally a debilitating fatigue where simple tasks will feel like she's run a 26 mile long marathon. Understanding that and knowing that any type of help and assistance you can give her will work wonders. Simple things like offering to brush her hair because it tires her out to have her arms up long enough to do it herself.
Chron's disease is another auto-immune disease and once we get one, we are susceptible to getting others. Most of us here suffer from more than one auto-immune disease (I, myself, have four). Most medications that work for one also works for the others. However, another important thing for you to understand is that each medication comes with it's own set of side effects. As such, it would be of great help to your Mom if you understood the purpose for each of her meds and what their side effects are.
As Tgal mentioned, help her as much as you can so that she does not get fatigued and so that she can get appropriate rest. Also, help her to avoid any unnecessary stress. Most of all, keep doing what you are doing; caring, loving, supporting, and learning as much as you can about her diseases and how they affect her.
We are here to help you as much as we can. Please read the sticky's at the top of each forum, they are filled with great information and may answer a lot of your questions. Also, please feel free to ask any question that you may have and we will do all that we can to provide answers for you. I wish you and your Mom the very best.\
Peace and Blessings