I’m so very sorry for everything you are facing💔 I will keep you in my prayers❤️ I don’t go to church but I do know God still hears my prayers and knows what you need to get through each day❤️ I know our paths have crossed for a reason. I hope you know of anything that I can do for my daughter to help her get through her flare ups. Any ideas that have worked for you are more than welcomed.
Veronica, the best thing you can do for your daughter is to accept that Lupus is her reality now. If she thinks about all the things she can’t do, she will always be unhappy. Find things that she can do during a flare, and concentrate on those.
The best that you can hope for is to reduce the flares. Keep her out of the sun, feed her a whole foods diet (organic if possible), keep on top of the labwork (she’ll probably need a vitamin D supplement). Don’t overschedule her - one extra “thing” a day at the most. She needs lots of sleep and time to recover after each activity. Do your research, and don’t be afraid to try alternative medicine.
I think you are right about our paths crossing was for a reason. I wish I had the magic answer. Someone said don’t overdo. I rest a lot. That is best way I know. Our children are grown so its easy for me to rest. Get the best medical help you can. I think I am lucky there. I believe I have good doctors. It always help, for me anyway, to have someone to talk to. My motto is “do what you can, when you can” I have tried so many times to push myself and it doesn’t work. Does she have any other health issues? if you don’t mind me asking. There are some that go hand-in-hand with Lupus. Try to stay positive. i know its not as easy as it sounds but I think it’s something you HAVE to do.
Thank you so much for your advice❤️ She is a non gmo vegan, is very conscientious about eating organic and getting her proper protein. She was at the top of her class until last year when she couldn’t focus for long periods of time and had more bad days than good. Took every thing she had to get up and get going. She has narrowed down her extra activities to volleyball which she has such a passion for. She does lighting and sound tech for the theatre but is thinking of not doing it after the fall performance. Until her bloodwork came back she felt how in the world could someone her age feel so old and as tired as she does. She would constantly push herself thinking all of this was in her head and she just needed to push through it. I thought it was her hormones and told her not to feel bad about sleeping so much because that is how your body repairs itself and is also what happens during a growth spurt. When she has headaches nothing seems to help her though. We both discussed alternative medicine so it does my heart good to hear you mention it. I will start her on vitamin D. Are there any other supplements you might know of. I have a friend who mentioned a doctor who dealt strictly with alternative medicine. My daughter does not want to have to start on pain medicine. I know cherry juice helps with the inflammation of gout so she began drinking that every day. My daughter was extremely active and involved pushing through the pain and fog. I think she is a bit relieved to know that there is something actually going on with her body. It took some of the “what the heck is wrong with me” stress off of her. She had made plans for where she wanted to attend college. Just last night she has already made new plans for a new path because I do not believe the military grants waivers for lupus. So from what you wrote she is on the right path. Again, if you know of something natural that would help her pain and headaches I would be extremely grateful. It sounds like we are much the same. We have to keep living no matter what. Thank you so much for replying❤️ The more knowledge I can gain the better her bad days will be😊
Veganism may not be the best diet for someone with Lupus. Does she have joint pain? The best supplement for joints is glucosamine chondroitin, which is not vegan. I have also started sprinkling unflavored gelatin on everything, for the protein and collagen, which I’ve heard helps (also not vegan).
There are many spices that reduce inflammation - my favorites are ginger, cinnamon, curry, cumin, tumeric, and of course, garlic. I’ve found that Indian food incorporates multiple anti-inflammatory spices into one dish. I love curries, so this is not a problem for me. I eat curry whenever I’m feeling stiff, and it definately helps.
I have a gel eye mask that I keep in the fridge and use when I have headaches. A chilled wet washcloth for the forehead also helps, as well as taking a cool shower. The trick is to cool down your head somehow. I don’t know why this works, but it does.
Also recommend ginger tea every night. Grate about an inch of fresh ginger into about a cup and a half of water in a pot. Boil for at least five minutes. Strain the ginger into a mug and add honey and lemon juice.
I also keep a pitcher of green tea in the fridge and drink it all day (no sweetener).
You Actually get relief from spices. That’s great. I guess I’ll have to try to use more than I already do. I’m on coumadin but I don’t think spices will have any impact with my INR. Interesting.
Good Afternoon Cindy,
I hope you are having a good day!
Some of her symptoms are difficulty focusing, her grades are not what they were. This bothers her less now that she knows why. She has overall body and joint pain, headaches that won’t go away with reagular headache meds. Fatigue that forces her to sleep more than she wants but she is relieved to know there is a real problem behind it. I’m glad you are able to rest! I have several health problems myself and some days all I can do is rest on a heating pad while she is at school😴
I will be keeping you and your husband in my prayers.
@Idioskosmos I think so many of us can relate to this! With cancer, it doesn’t last for decades. You are taken seriously. People can understand that you have a real illness instead of thinking you are faking because you look so good. And the most important thing, with cancer, it ends. Either you are cured or you pass away. We are not given even an ounce of credit for all that we suffer. Cancer patients are seen as heroes. People are so much more willing to help and support you if you have cancer. People get very tired of us never getting well.
My father was diagnosed with large B cell lymphoma three years ago. Stage four! He decided that he wanted chemo and to fight! Listen cancer sucks as does lupus! Maybe stage 1 or 2. But understand most cancer is only in remission meaning it is never gone! My dad was horribly ill for 8 months going thru chemo in fact thru watching him, I learned how to be strong to fight lupus! I didn’t think dad should do chemo! I kept thinking it’s only gonna give him three years then go back thru suffering? He wanted to fight! We did! One month after they said he was in full remission! He had three heart attacks in a month! His heart attacks caused by the strong chemo killing his heart muscle! Dad now has a very small part of his body substainging his life! Next his kidney failed! He did get maybe six months that he felt ok like we do then more hospitalizations the next six months dealing from organ damage the chemo caused! Last month they told us the lymphoma returned! They also found three new nodules in his lungs and believe it’s a different cancer! My father had the large B cell cancer that sjogrens often increases chances to get! I’ve never told my parents my diagnosis and although they know something def is wrong with me, I completely minimize my condition to them! I don’t want my mother worrying or my dad worrying about me for his last months!
I’ve often times listened to his complaints and medical history and it is alarming to me how much my medical history and symptoms are so much like his!!!
I think the only thing that makes one illness better than the other is that if you have cancer everyone realizes how serious it is and his supportive and u derstanding! When you say I have lupus, others have no idea how serious it is! A cancer patient is pale, massive wt loss and looks horrible a lot of lupus patients look well until it’s just horrible! People understand what lupus is and it’s our responsibility to somehow teach others what lupus is too for those behind us with this diagnosis!
But honestly, both diagnosis is horrible!!!
I’m so sorry for all you family’s issues. When my brother had he was given 1 year and his DR recommended that he didn’ have chemo or radiation. His quality of like be be much better for the yer he was given. He lived just about a year but in the year he did what he wanted. I am lucky I have a family that understands what I am going thru. I have acute stage 4 kidney disease no along with everything aching. I try to do as much as I can. My husband has CHF. He had 2 more heart attacks in Sept and had three more stents in his right coronary artery. He is doing great but I know he can’t survive another heart attack. This is life I guess.
I hope you have someone you can talk to especially to help YOU.
Take the best care of yourself that you can.
I was just thinking about yesterday. At least with cancer you can be “cured”. Knowing I have Sle Lupus it is always on my mind, because theirs no cure at all.
My mom had a doctor tell her that over 20 years ago. That being diagnosed with cancer is easier because you either beat it or you don’t. Lupus never goes away. how sad that there is something worse and nobody understands it or cares
Yup, I get it, cass. I have a chronic and debilitating rare disease as well. But when you say “nobody understands it or cares”, I think we need to remind ourselves that it’s because they don’t understand it, they cannot care. If they understood what you are going through, they would care for sure.
I work on all thirty of Ben’s Friends communities, and I think of all the issues that come up, the “nobody gets it” thing is the most frequent, and one of the most difficult parts of having a chronic, rare condition. Until they have experienced something similar, they cannot get it. And if they can’t get it, they can’t care. It’s not that they’re unsympathetic, but they just can’t.
Seenie from Moderator Support
I think most people are familiar with cancer in a personal way. I watched my Dad die of cancer. I watched a friend of mine lose her battle with breast cancer. I think because cancer affects so many people, there is much more awareness and understanding about cancer. This is not the case for Lupus. That is the point of this post. Nowhere did she claim that people with cancer are more fortunate than people with Lupus, so I think your reply is missing the mark. Most of the responses in this thread are actually acknowledging the awfulness of cancer. But, there is something to what is being said here… Lupus is awful and many people haven’t even heard of it - they look at you sideways, and maybe even mistake it for AIDS when they hear auto-immune. (This has happened to me). They wonder if it’s catchy. So, the basic awareness and understanding just isn’t there, let alone sympathy. People don’t rally around you if you get a diagnosis of Lupus. I noticed a Go Fund Me page for the wife of one of my classmates who has cancer. A lot of my classmates were donating to the page. Comments going around on Facebook were that they had no idea the family was going through this. Whereas, with Lupus, those Go Fund Me pages and the shock and sympathy don’t exist. It doesn’t matter that I lost my job due to illness, and therefore also lost our first home… People don’t recognize that it’s a cause worthy of a Go Fund Me page. My employer actually said I wouldn’t get Long Term Disability benefits, so don’t bother applying, because “only people with cancer” get those benefits. The point is that Lupus really sucks, and can stop you from functioning in this life. It can be life threatening (not just lifestyle threatening) when it hits your heart and kidneys. And I personally wish it was more understood out there. I would have loved if anyone not immediately related to me ever once really understood how devastating this has been for me and my family. No, I don’t wish I had cancer instead. I was horrified to read that my chances of developing certain types of cancer, such as Lymphoma, are elevated because I have Lupus. Dear God, a diagnosis of cancer is the last thing I need. I just wish I had some warm embraces and a little acknowledgment sometimes.
I know. We all feel like that: this is the beauty of a peer support community such as this one.
FWIW, your reply to anon38611781 has probably fallen on deaf ears: the person has left the community. When that happens, their posts remain in place (but are “anonymized”), in order not to disturb the continuity of discussions.
I don’t have lupus, but I do have another rare auto-immune disease, and I totally get what you’re saying, as do the other members of this community. We’re glad that you’re here, adaley, to share some virtual embraces with us.
Hugs to you Seenie from Moderator Support
I think this discussion has run its useful course, and we’re closing it to further comment. Please PM ModSupport if you want to discuss.