Thoughts about Lupus

Here is an interesting bit of information about triggers:

http://www.ncbi.nlm.nih.gov/pubmed/23350572

Bev, you always put things in perspective.

Thanks!

Beverly L. said:

Hello my friend! It is okay to vent here, that is why we are all here to listen understand, and support when others won't /don't !! Smile just remember it all will be okay, relax and rest as much as possible -don't cause a Flare for yourself. Yes this sounds like there are things they you must take care of - but hay! Take your time at whatever has to be done! You are just one person and don't have 12 arms.LOL just remember be yourself and Don't STRESS....Beverly L.

Deanna ur a brave woman!

i do agree about some osrt of traumatic experience to the body- whatever that may be.. emotional or physical. I am at a lost for words conerning your baby son... i know that has to be so frustrating and painful and confusing. regrdless of the situation. especially that he isn getting the help he needs. my mother has the schitzophrania(spelling...oops) ... and its so dibilitating. wthout meds.

the ex husband. he is an ex for a reason. Doing harm to others will only return back to him. so i hope he matures soon...or it wont be pretty for his future. karma is a *****.

when you do your search for therapy- put in chronic illness for the therapist specialty. thats how i found mine. she finally emailed me back to confirm a date and time. and i wont complain. yes i felt like i was near a breakdown- but i am still here....THANK THE LORD>.... and i am still in need of her help. me sort of anxiety issues -- that are severe.. and need to be addressed. this only started in the last year or 2 ...so not very familiar.

but the mood changes are so savere. one second i am at a 2... then 5 minutes later a 10. Not healthy for me or for those i love.. my kids and husband.

I wont ignore these issues. gotta seek help.

well have a good night everyone. wrist are acting up... being on pc too much

whathappensinvegas said:

Cynthia,

I am from SD, too. It's hard to pinpoint the time when our disease kicked in. I believe mine started when I got Mono when I was 12 y.o. 6 months on the couch barely able to move. Got better some after, but went through several surgeries to remove lymph nodes and skin grafts. I felt like I was getting better again, until a back injury which required 2 surgeries and 3 1/2 years of rehab. I think it takes a trauma to the body to jumpstart the virus. Mine let up for about 9 months in 2005, until I had to turn in someone close to the authorities for embezzling investor funds. Talk about stressful. It's been full burn ever since. Not to mention an ex-husband who refuses to get my younger son help even though he has a diagnosis of bi-polar disorder and schizophrenia. The last time my son was here, my ex called the police with a fals report that my husband "beat the sh>>" out of my son. To tell you the police never even spoke to my husband after seeing my son should say all there needs to be said about that, except that my ex then went to my atty where they live, told the same lie, she dropped my representation 10 days before the court date, and I was fighting just being released from the hospital. What kind of jerk goes after their ex while they are sick? Now I am in hiding from my son. He is 18 and I have a restraining order against him as my ex has convinced him that all I did was beat him and he has sworn to kill me.

Thankfully, I have an older son that is very aware of the truth, because he was old enough to remember the abuse I suffered at my ex's hands.

So, what should be a new start with a great husband, just won't stop. I really want to find some meditation exercises that I can do at home. But also am looking for a counselor on our plan that deals with chronic disease. There just is not anyone that specializes in Lupus that I have found in LV.

Sorry, that was a vent...and didn't mean it to be. Thought when I got away I would have a new start. I also had the tonsilitis and "growing pains" as a kid. I'm 5'5" so not like I was growing really tall. My "other" son suffered the same issues, but I will not be able to help him.

LIFEwithLupus said:

great responses.. i totally agree with everyone else and their feedback.

I am from san diego Ca... i had issues withjoint pain since i was around 5 or 6. But i was unable to really explain hat i was feeling. they tested me to arthritis- to have a nagtive test. they never considered lupus back in 82.

then in 2001 i was living in AZ and caught my first sinus infection ever. I didnt have health insurace..and was young and clueless..... i suffered for over a year. stripping vocal chords. etc.

and just horrible pain... to my ears. my throat and chest. One day i got a fever of like 104/ nobdy was home- so i suffered in pain. i slept straight for maybe 3 days . just drinkin water and back to sleep. on the 43rd day- went to Emergncy room only be told i needed a specialist. at that time my god sister had lupus - so i made appt with her doctor. I thought i had schleroderma - as i did much rsearch online the test we marked for lupus. I was dianosed immediately.

anyhow, the trigger for me was emotional distress. i was literally stressed out so badly- and i wasnt handling it well. my body handled it through the activation of my immune system. I believe it responded by going crazy and killing everything. insted of just the germs.

even as a baby i was sickly. as a child i caught all the germs imaginable. viruses. bronchitis was constant., phnuemonia.....severe hives... all over.

so the signs have always been there.just not clear for the doc to diagnose.

they kept telling my mother i ad growing pains... so my mo would rub my legs and bosy until i fell asleep.

she didnt know to kgive me overcounter meds.

so i just suffered.

Dancermom,

Although I agree with AnnA. in principle, I too had a very picky eater. I found, because I too like my goodies, ways to remake the "junk" foods we tend to crave healthier while keeping the nutrients that, especially for us Lupies is so important.

If your child craves chicken nuggets (a favorite of my son) it's easy to remake these using chicken breast breaded with a spiced up blend of gluten-free Panko bread crumbs. You can bake several at a time and freeze separately on a cookie sheet then keep together in a Freezer bag for ease of use. (Check the Gluten-free Group)

And, while most Lupies tend to live normal life "spans" it's going to be important to learn early on what the triggers are to avoid a flare. Stress, sun exposure, over exertion, physical trauma, etc.

Knowing what these are and avoiding them may help him live more of a normal "life".

Hugs,

DeAnne

Thanks, Anne and DeAnne!

Hi, it is not a problem-that is why we all are here - for the SUPPORT....Beverly L.

whathappensinvegas said:

Bev, you always put things in perspective.

Thanks!

Beverly L. said:

Hello my friend! It is okay to vent here, that is why we are all here to listen understand, and support when others won't /don't !! Smile just remember it all will be okay, relax and rest as much as possible -don't cause a Flare for yourself. Yes this sounds like there are things they you must take care of - but hay! Take your time at whatever has to be done! You are just one person and don't have 12 arms.LOL just remember be yourself and Don't STRESS....Beverly L.