I know the answers will be all over the place...but....it would help to hear your experiences...
HELLO, I RAN A LUPUS ORGANIZATION LOCALLY. I CAN TELL YOU IT DEPENDS ON THE PERSON AND HOW SERIOUS THE STAGE OF LUPUS THEY ARE IN. I MYSELF, I AM IN THE FINAL STAGES WHERE IT IS DOING AS MUCH HARM TO ME AS POSSIBLE. I HAD A CAR ACCIDENT, WHICH I WAS A PASSENGER. I LOST MY REMISSION AND MY DORMANT MS BECAME ACTIVE. SO, IT DOES DEPEND ON YOU. MAKE SURE YOU TAKE CARE AND TAKE NAPS. THE BODY DOES HEAL ITSELF SOMEHOW DURING THE REST PERIOD IN THE BEGINING AND MIDDLE STAGES OF LUPUS. MYSELF, IT ATTACKS ANYTIME IT PLEASE TO ANY ORGAN. SO, NOT ONLY DO I HAVE LUPUS, MS, FIBRO, AND NOW CONGESTIVE HEART FAILURE. RECENTLY, I WAS LOSING MY VOICE AND THEY TREATED IT WITH A SHOTGUN TREATMENT OF ANTI-BIOTICS. IT DID NOT WORK AT ALL.
NOW THEY SAY IT IS NOT A BACTERIA INFECTION IN THE VOICE BOX BUT A FUNGIS. SO, I DO NOT KNOW WHAT IS NEXT UNTIL I GO TO THE SPECIALIST MARCH 12,TH. I PRAY TO GOD JUST TO TAKE ME HOME. I AM EXHAUSTED AND I AM VERY UPSET ABOUT MY DIVORCE BECAUSE NOW MY EX HUSBAND STRAIGHTENED HIS LIFE OUT AND IS GOING TO GET REMARRIED.
SO, I GUESS IT WAS MEANT FOR ME TO BE ALONE WITH MY SERVICE DOG. WHO IS GOING TO MARRY SOMEONE WHO IS SERIOUSLY SICK. NOT MANY!!!!!
TAKE CARE AND PRAY
LOVE MICKEY AND SERVICE DOG RUSH
I have had lupus since 2004. My flares occur weekly and last about 24 hours with muscle aches, joint pain, rash, fatigue, weakness, fever.
Dear Michele, I keep hearing Lupus will kill you, but I have only known 1 person who died with Lupus and she had other complications that took her home. She was my great grandma Ruby, (Spunkiest, Independent, woman I ever met). If you don't mind, your story made God tap my heart and ask if I may, I would like to become your friend and prayer support and help. My great grandma-sle, grandma-just skin rash lupus, rhuematory arthritis, and diabetis, my mom-she has never been diagnosed w/lupus, but has a lot of the symptoms, rheumatory arthrtis, osteporis, and than she had an acoustic nerve nerouma brain tumor which caused seizures and led to a massive stroke. The specific b
Type of brain tumor runs in the women in our family, as does the lupus. My great aunt, two of my 2nd cousins, and my mom, all had the acoustic nerve nerouma brain tumor. My mom cannot afford a service dog, so she trains her labador retriever sign language and handicap commands. I myself am going thru a divorce and I know how bad it hurts, especially when your soul mate doesn't support you in your lupus. That alone is a huge emotional blow and strain. Then when they move onto someone, healthier and rub it in your face. Needless to say been there and done that. I really haven't been around someone in the late stages of our disease, but everyone tells me it is debilitating. Everyone needs good, honest, trustworthy frriends. Ya, know the ones when they ask you how you are, actually want to stick around and find out and weren't just making polite conversation. I have read this web site is the place to get that kind of lupus support, no one responds to my posts as of yet, and I know how alone that has made me feel. I'm already been rejected by husband, family and friends because of my illness, and it really makes you feel lower than the scum in the pond when you get rejected by a website that's for support of what you're gng thru in your own disease. So, I tell you this, right now, Ms. Michelle, you are not alone. Someone will notice when you are really in a bad flare and sick. Someone will care when you write your down in the dumps and help carry the day to day worries that this disease puts us thru, physically, spiritually, mentally and monitarily. Inbox message me thru this support group and I will cheer you up, or listen to you vent, or just pray with uyou and your dog and be there for a fellow Lupie O:-) You are not alone! I care
Today ,yaull brought tears to my eyes...I understand what yaull are going through.It touches my heart to read these letters, and lets me know I am not alone.
Heather, Your email really touched me, as did Michele's post. I can only imagine being left by a spouse due to illness....it must be gut-wrenching. I have been unmarried for 17 years. I have a boyfriend now (of three years) who is very helpful and supportive plus lives in my neighborhood, but due to my illness, I know I am not "marriage material." Funny thing, I have a male friend of almost 50 years whose wife has a rare disabling disease (PSP). She has been sick for about five years and he has dedicated his life to helping her; he cares for her at home. I would never have thought that he would be a person to take on her care in this manner, people surprise you for good and bad. In the beginning, after being diagnosed with SLE and unable to work, a friend (?) who is a financial adviser told me, "You need to find a place to live with others who are like you!" This was after I had to call her (in the AM) to cancel plans for a dinner party at her house that night. I couldn't get out of bed that day due to extreme fatigue and pain. That response really stung and affected my thinking. Rarely, do I make plans, because I am unreliable due to my health and most people do not understand this situation. In an emergency, I can take meds, but it must be due to a situation like a doctor's appointment or a funeral. I have lost many "friends" because they do not understand, yet some people have come through to always keep in touch and let me know they are there for me. Even my ex-husband of 20 years ago has been helpful and supportive. Most days my two cats provide me with wonderful company and entertainment. Heather, I have just started truly using this site (joined several years ago) and posting subjects and responding to people. It takes awhile to get the feel for how it works, and many people have jobs and kids of all ages. I hope that you get positive feedback from your post because I guarantee you there are others who will want to communicate with you and share experiences. This disease, as well as all the others we "Lupans" seem to have, are daunting. To try and get over the hump of negativity is hard. Many days I hope for a short life (I am 60) as I don't know how long I can fight this foe. I use that old tired expression, one day at a time, and I worry because I have no relatives or children left except a nephew who is greedy and totally self serving. Not that relatives are always there for you! My full time job is taking care of me--my health, my minimal finances, my cats, my house and car. I have become VERY prudent with money. My goal is to die here in this little house when my time comes. I have two friends who I trust who have promised to take my cats if I am gone. I understand your disappointment and hope that others will reach out to you. I'm sending best wishes for peace and love, The Lupan Catwoman
Heather said:
Dear Michele, I keep hearing Lupus will kill you, but I have only known 1 person who died with Lupus and she had other complications that took her home. She was my great grandma Ruby, (Spunkiest, Independent, woman I ever met). If you don't mind, your story made God tap my heart and ask if I may, I would like to become your friend and prayer support and help. My great grandma-sle, grandma-just skin rash lupus, rhuematory arthritis, and diabetis, my mom-she has never been diagnosed w/lupus, but has a lot of the symptoms, rheumatory arthrtis, osteporis, and than she had an acoustic nerve nerouma brain tumor which caused seizures and led to a massive stroke. The specific b
Type of brain tumor runs in the women in our family, as does the lupus. My great aunt, two of my 2nd cousins, and my mom, all had the acoustic nerve nerouma brain tumor. My mom cannot afford a service dog, so she trains her labador retriever sign language and handicap commands. I myself am going thru a divorce and I know how bad it hurts, especially when your soul mate doesn't support you in your lupus. That alone is a huge emotional blow and strain. Then when they move onto someone, healthier and rub it in your face. Needless to say been there and done that. I really haven't been around someone in the late stages of our disease, but everyone tells me it is debilitating. Everyone needs good, honest, trustworthy frriends. Ya, know the ones when they ask you how you are, actually want to stick around and find out and weren't just making polite conversation. I have read this web site is the place to get that kind of lupus support, no one responds to my posts as of yet, and I know how alone that has made me feel. I'm already been rejected by husband, family and friends because of my illness, and it really makes you feel lower than the scum in the pond when you get rejected by a website that's for support of what you're gng thru in your own disease. So, I tell you this, right now, Ms. Michelle, you are not alone. Someone will notice when you are really in a bad flare and sick. Someone will care when you write your down in the dumps and help carry the day to day worries that this disease puts us thru, physically, spiritually, mentally and monitarily. Email me, Lilliangalena@yahoo.com, or if you are more cputer savy than myself, lol, inbox message me thru this support group and I will cheer you up, or listen to you vent, or just pray with uyou and your dog and be there for a fellow Lupie O:-) You are not alone! I care
wow ladies,Im feeling so sad for you…Have you ever heard the quote,(If god brought me to it,He will bring me through it)!!! Lupus is not a death sentence,It’s a life sentence…It pushes me to live and value what I do have in this life.Sometimes I spend the day crying,I think that is a symptom of the lupus,as well as the daily stress my family puts me through…I have been on this site for over a year and Ann is the only one who friend requested …my son just got me an iPad. before that I had a hard time with the computer key board,So I spend most of the time reading this site…I wear braces on both hands,I have a difficult time with the simple daily tasks you need your hands for…I try not to wear my illness or my symptoms on my sleeve.I have always taken great pride in doing things for myself,I was raised on a farm in the country with all brothers,no sister…"so I learned to be very independent …lupus put me in a tail spin,"I feel like the lupus is always one step ahead of me."despite that,Im not giving up…"I have to many items on my bucke list …I turn the big 50 in April,I have been blessed to live 5 decades and I’m not done yet…PLEASE TRY TO HAVE A GOOD DAY FRIENDS…XOXO CELESTE
My flares can run matter of few days to months....than go into remission for periods...though my RA which is tied in with SLE does not though it can go through periods does not hurt as much or damage is slowed down.
I believe if you rest, mediated and eat healthy..vegetables etc that you may feel now that great and it will get worse as you age but your life can be fairly decent. Of course it just depends on how lucky one is....kidneys etc involvement. Though i have had kidney involvement and I still rate me at moderate...compared to how my brother suffered...though men get much worse and tend to be ones that die. Could it be also since they also feel they must support their families, not show or even express pain etc they they are experiencing.
I often wonder if they is hey doctors tend to take men more seriously...which is not fair, since not all women complain about every pain etc..
so it just depends...how good your team of doctors, you take care of yourself...push through not feeling well to get out and enjoy life, have some kind of support plus i do believe spiritual belief helps too.
Just do the best you can...try to rest, eat well and walk or exercise at least 3 or more times per week. OH and keep educated!!
My flares are mild, that I just need to go home and rest. My lupus is mild, but changing. I did develop pneumonia days after my mother died, which was the worst flare. I was bed ridden for about 7 days, and lost so much hair afterwards, I ended up cutting it really short.
If anyone feels like they are reaching out and not getting support here, please send a friend request to someone, and reach out 1 member at at time. Add a discussion or a blog.... Everyone here gets sick, and has good days and bad days. Many who work, might not be on as much as they would like to. While I was first post-op I read discussions, but I was too exhausted and too uncomfortable to reply much. We are here for you, all of you....
I am currently battling a flare up that was a year old in October. I am so freaking sick of being sick
I don't know when I am not in a flare but then I don't know the difference between lupus and fibro flares either. I just know that I never feel good and I am always very tired. I hope that every person here gets some support along the way. I am not on the computer as much as I used to be because I am pushing myself to ride a stationary bike and to keep making quilts, totes, etc. I have to do that or I would just sit with my eyes closed all day.
Question: Is anyone here on Benlysta? My rheumy wanted me to go on it but it is so new and I hate to think about being hooked up to an IV once a month. I also was having difficulty finding a hospital that is equipped to do this. It is done in a cancer treatment center usually but one hospital quoted my doctor 80K per treatment!!! The internet says it averages 35K a year. I still have not checked to see if medicare would cover it either. I look forward to any info anyone can give me. Reet
Maybe I replied at the wrong place??? It is at the bottom of the discussion. I am limping thru this site but I will eventually catch on to it.
I have tried Benlysta --- several years ago and it didn't work for me. It helps about 1/3 of patients, I think. I was not one of the lucky ones but then I WAS fortunate as I was able to try it. I didn't pay anything for the infusions. Contact the company direct that makes Benlysta (Human Genome? Try a Google search) and they are helpful about obtaining financial assistance. There is a service with the drug company called the Benlysta Gateway. They want to get a positive track record and no one could afford it if they didn't help. Of course, this was two years ago when the drug came out and it was my experience. In my area, I went to an infectious disease IV lab.....I live in Dallas and it was only 10 minutes away in an office building. Good luck to you, Reet! Nothing ventured=nothing gained. Lupan Catwoman Gail
Thanks for the answer, Lupancatwoman. Whew, that is quite a handle! lol. I am always leary about trying unproven drugs and the reason was so I wouldn't be on prednisone anymore. Since I usually take only 5mg which I don't feel helps me, why bother then with either one then. I have had to hit the pred hard again and will slowly taper down again. I can not keep the pain undercontrol at all even with pain meds. Better days ahead I am sure.
Triggers are there every day. Once a flare is come, it lasts about a week.
I left my husband of 30 years. He was unable to cope with my illness, and I needed peace and quiet around me, not arguments. I can say that I got that big stress trigger off me and I do not want it back! My mother always said that it's better to be alone than in bad company. I am VERY happy alone. Have friends, family nearby to look after me if I need.
i have had them last about year or more to only month so just really varies about stress and if you are working plus just who knows. Working though, since i could not rest as much did make me have more flares plus exposure to illnesses caused problems and flares i am sure. My white count always tends to be on low and if i was really busy my doctors could tell since it drop dangerously low.
Latina is right about it is better to be alone than to deal with stressful living conditions. I have a husband who is understanding about my diseases but he has severe depression and his own health problems. We have completely different out looks how to cope...i fight it where he can sleep around the clock and often would when we were not living together.
i wish i had the money right now to live on my own and been trying to find a place i can afford. Latina is lucky to have friends and family for support since my husband is also my main support person...complicated....often i enjoy it but when it is bad....yes it makes me get sick.