Rhetorical question, but still appropos, the increasing stress in my life and my non response is causing me to become ill. My week long good feeling has stopped. Too much stress in my life no one really to share this struggle as I am estranged from my mother and my father recently passed away. Everyone else in my family is making me feel like I am going to die, saying "which level of lupus do you have??" Levels, I don't know about levels have not been told anything about levels by my doctor, I want to say "Gee thanks, for making me feel worse then I do" and then of course I go back and forth between "why me at this point of my life" and then I know children are not a possibility, so what am I to do??
Oh, yes, my 10 year old dog continues to lay in my spot on the bed and refuses to move without me laying around her, not a big deal, but just the icing on my stressful world. A little levity is needed for me, I feel like I will go crazy.
Even though the title is rhetorical, guidance will help me cope or strategies to reduce stress so my body does not go haywire.
I have never had any one mention levels before…although I have heard doctors class most chronic illnesses as mild, moderate or severe, maybe that’s what they mean? People with Lupus can still have children! I have an aunt that had two boys after being dx. She had no problems conceiving and was monitored closely while she was pregnant. Healthy babies delivered by c-section (which I believe was just precautionary). Maybe educating your family members about Lupus would help them support you? Even reading about it online can be very overwhelming since some of the symptoms can be pretty devastating, but my understanding is that having all the symptoms is rare which is why it’s called the disease with a 1000 faces. I hope you are able to find a way to reduce your stress. I find reading other people’s experiences helpful…it kind of puts things in perspective. I also love a hot bath with a good book…very stress relieving for me
Thanks Roni for your support and reassuring story of possibility of children with Lupus. This is why I love this group, so many people and experiences that give me hope and I one day want to return the positive vibes.
I never heard the term coined "disease with a 1000 faces" but I like it, the term fits..
When reading up on the symptoms try to use a site that gives percentages. The Lupus foundation of America is a good source…this is from their website:
The list below includes the most common symptoms of lupus and the percentage of lupus patients who experience these symptoms.
Symptoms. % Occurrence
Achy joints (arthralgia). 95%Frequent fevers of more than 100 degrees F. 90%Arthritis (swollen joints). 90%Prolonged or extreme fatigue. 81%Skin rashes. 74%Anemia. 71%Kidney involvement. 50%Pain in the chest on deep breathing (pleurisy). 45%Butterfly-shaped rash across the cheek and nose. 42%Sun or light sensitivity (photosensitivity). 30%Hair loss. 27%Abnormal blood clotting problems. 20%Reynaud’s phenomenon (fingers turning white and/or blue in the cold). 17%Seizures. 15%Mouth or nose ulcers. 12% Hope this helps put things in perspective!
Unshoreandscared said:
Thanks Roni for your support and reassuring story of possibility of children with Lupus. This is why I love this group, so many people and experiences that give me hope and I one day want to return the positive vibes.
I never heard the term coined “disease with a 1000 faces” but I like it, the term fits…
hey i want to be of support in some way if i can—i know what it is like to feel alone with this deisease i cant spell today having neuro and idk what probs but not well,but i will be better soon and want to be there for uu
Bless you! I can sympothize with you! I am lost right now as well, but wanted to let you know I have 6 kids (5 which I gave birth to…all natural)!
This group has been here for me while friends have turned away. It’s sad to see others struggling but reassuring knowing we are not alone
Unshoreandscared said:
Thanks Roni for your support and reassuring story of possibility of children with Lupus. This is why I love this group, so many people and experiences that give me hope and I one day want to return the positive vibes.
I never heard the term coined “disease with a 1000 faces” but I like it, the term fits…
Right there with Heidi! I 2 find help in logging onto here & knowng I am heard at least by someone who gets it…We are a group people who bacame liek family to one another causewe never judge & understand each other so well…And Heidi is right w/ te friends that tend to disappear when the goin gets tough!!! We learn the hard way who sticks around us! Family (no offense, at all!) relly only hear “LUPUS” & think negatively…which makes us feel worse…but they too I am sure are very scared about us! And u are right, getting more stressed makes us feel so much sicker in general, so try to Smile as much as u can, & the doggie issue w/ ur spot in bed, makes me chuckle,cause I go thru the same,but my “furry family members” I gotta say Luv Me & never judge me so Unconditionally, more than I can say for the rest…sadly…and Iknow u all here know what I mean with that.Hang In! U always have US!! Luv, Suzie :0)
Heidi said:
Bless you! I can sympothize with you! I am lost right now as well, but wanted to let you know I have 6 kids (5 which I gave birth to....all natural)! This group has been here for me while friends have turned away. It's sad to see others struggling but reassuring knowing we are not alone :)
Unshoreandscared said:
Thanks Roni for your support and reassuring story of possibility of children with Lupus. This is why I love this group, so many people and experiences that give me hope and I one day want to return the positive vibes.
I never heard the term coined "disease with a 1000 faces" but I like it, the term fits..
I have learned through the years, how to deal with some stressors. I do not open mail, or even take it into the house, in the evening. There is nothing I can do about it at that point in time.
I do not worry about what may come tomorrow. It will come, tomorrow.
I don't worry about what other's think. They will think it anyway.
My truth is not what other's see. My face, my hair..."You don't look sick"
Many years have passed since I was diagnosed. I've learned, through my own doing, how to avoid these many ways of feeling stress.
Please, don't let them into your life. They only steal your time on earth.
Thanks Xintonetwo, I was told this by my doctor, because of the high likelihood of the child's heart being underformed due to the sjoren's secondary diagnosis.
I am still researching. Thanks for the confidence xLntonetwo
xlntonetwo said:
PS
As far as children; I have two grown children. I was diagnosed after they were born.
At the time, I would have been discouraged from having them, had I been diagnosed prior to pregnancy.
Don't be afraid. They no longer say you can't have children.
