Hello! My name is Kari and I am new to the group. I was in the hospital for the month of July and shortly after diagnosed with lupus. I had never even heard of lupus before that. Since then I have been in and out of the hospital and have not been able to return to work. I have blood clots in my leg that wont seem to go away, I feel nauseated pretty much all the time, and I have pain on my left side and back.
Since I have been diagnosed people tell me that they know of people who have lupus and how great they are doing. I am just wondering if I am doing something wrong. How long does it take to feel better and return to work? I take Methotrexate once a week and that knocks me down the next day, then I take Hydroxychloroquine every night which I think makes me sick to my stomach but I am on other meds too (blood thinner, prednisone, Viibryd, and about 5+ others) so it is hard to tell.
I am thankful that I lived and that I have a diagnoses, it is just frustrating at times having to adapt to my new limitations. I thought it would be a good idea to join this group and get some new perspectives on things.
Welcome to the community. I too was diagnosed in July so I’m still trying to figure out the disease myself. I’ve had similar experiences with frequent hospital visits and being unable to work. It does get extremely frustrating not being able to do the things you were once able to. I had similar problems with Imuran but after about a month or so of taking the meds the nausea soon subsided. I’m sorry to hear that you aren’t feeling well. If you ever need to vent, talk, or ask questions this is a great place.
I felt much like you when I was diagnosed a couple of years ago. It takes a long time to learn to live with lupus and your limitations, two years after diagnosis I am still learning. Since diagnosis I have taken a couple sick leaves, worked full time (which was almost impossible) and now work part time. Many people with lupus cannot work, you are not alone in that. I am on methotrexate and it also makes me sick for a couple days. The plaquinil made me nauseous for the first month or two then it went away no more nausea, hand in there.. Meg
I am 37yrs old and a single mom of two teenagers. I have worked hard since I was 15 so this is defiantly an adjustment. I have heard about the good allergies but how do you know what you are allergic to? I haven’t ever been allergic to food before. Are there common allergies that I should look for?
I have been put on short-term disability through my work. Can you also get disability or other govt. assistance?
I will read the books and try to learn as much as I can. Do lupus patients stay on Methotrexate and Hydroxychloroquine forever? I have read that lupus is both genetic and then caused by environmental factors. What is it?
Thanks so much!
Kari
You've got some great comments here, sound advice. I recently went to visit my sister, and my brother-in-law always brings up a friend with lupus who works, and has her own business on top of that and is in the theatre and on and on. I know he means well, and I'm used to it now. At first it really upset me though. I think he was trying to motivate me, but I didn't want to be motivated when I was first diagnosed. Truth is people just don't know enough about lupus. I believe we all need to treat ourselves as though we are sun-sensitive, even if we don't have outward signs.
I feel so much better now, and its all due to the great members that we have here on LWL. Welcome to our family!
On this site you will find many others who share some, or all, of your symptoms. You will not feel so alone. I'm so glad you joined Life With Lupus as people here understand and care. Welcome, Kari!
Welcome!! Sorry about your diagnosis ;( It won’t take long for you to realize that there are so many ups and downs with this disease. Most people who have it have so many things going on they tend to downplay their symptoms so those idiots who proclaim to know someone with lupus and they are just fine have absolutely no idea what they are talking about!!! Can you tell I hate when people say that along with but you look fine…looking fine and feeling fine are two totally different things!!! Although there are different degrees to which people suffer trust me when I say no one with lupus is fine!! I don’t mean to alarm you but rather reassure you that whatever you are feeling is normal for someone in your position. You definitely came to the right place. Everyone on here is very kind and caring and the best part is no matter how weird you think a symptom might be you will always find someone who has experienced the same thing which helps let you know that you are not crazy ;). Thoughts are with you
I run into people all the time who ask me why I can not bike or hike or camp any more. They know people with Lupus who play tennis and live normal lives. Well… Good for them! I am genuinely happy that they can. I am personally greatful for being able to work part time. I don’t have surgeries and transplants and hip replacements. Some of us do! Because Lupus does not act the same in each of us. That’s like asking to cancer patents to give the same story. Does cancer just attack one way? Does it kill all the time? Does it make every one lose limbs or organs? No! So why would Lupus behave exactly the same? It is one of the greatest mysteries of the medical field. They tell med students that if they can figure out Lupus, they can figure out anything. So tell me why we should accept the idea that we will all understand lupus. Tell me what makes those people,who know a person, somehow an expert on our condition. There’s no easy answer. That’s why we need each other. We need the support we each can give. The strength we can pass along and encouragement we need. Our doctors have experience at tryingto Manage our condition. Not cure it. Cancer has cures, not lupus. Some get long term remission, which is how they talk about cancer too. Yes, but lupus doesn’t go away. A good diet, regular activity, and management of symptoms may lead to a life of remission or even a life that is simply better than what you are going through now. Life! Life is orecious and worth living. Don’t let lupus define you. You define you. That means life will change and you may becomea new you. But that you will be stronger, wiser, and have a perceptive of life, a gratitude, that others will envy.
I am so sorry Your Lupus is bad. But maybe it’s just bad right now. Focus on that. Focus on getting better. Feeling better. Thinking better and visualizing what you will work toward. I made goals. Small promises to myself for when I feel better. I love knitting. So I knit when my hands let me. I love learning new skills. So I am reading up on basket weaving. I collected sticks. Next I will collect pine needles to make stitched pine needle baskets. I don’t need much brain work for those things. Just finger work. For when my fingers are bad but my brain can focus, I buy a new book or go to the library for several. Over the summer I was well enough to read over 50. But my hands could only make two small caps. I was proud of my accomplishments.
Right now! My goal is to work on a poster for my room. It is a drawn collage of things that are the parts of the new me. A celebration of this life. Acceptance of a future that is different than planned. My fingers can do it at times. But it takes more brain work. So I wait for good days. Those may come slowly, but they will come. And When theydo, I cellebrate with creativity.
Set goals. Small ones. Feel greatful or what you cando and proud of yourself those small accomplishments. Funny as it sounds, those goals started with brushing my teeth. Lol. I was proud to do it and then proud to shower with out needing a nap after. To brush my hair, teeth, and shower in the same day. that was one of my proudest days. This past Sunday I was excited to make it through a 7 hour work week. I have come a long way. It took time and a lot of change. Change is good.
I do not always feel optimistic. No one can. But let me share my positivity with you. Let us inspire you to believe in a better future, one day at a time.
Good advice. Don't forget that fluorescent lights do it too. Same with those new light bulbs that improve lighting. Change to the old style ones n your home and invest in really good sunblock. Do not go out unless you haveit on. Cvs sells 95 and 100 proof. I like the 95 face one and the 100 for my arms, neck, ears, chest, and feet. Tomatoes, gluten, eggs, dairy, and afew others are common allergies or sensitivities we tend to develope. I have to avoid gluten like the plague. But most days I can have a little tomatoe. Red wine is out, but some whites, ones with really low acidity, ate okay most days. You will have to listen to your body in this and many other things. It will say when something is okay or not. Listen to it.track things.
Trisha said:
Hi Kari
You've got some great comments here, sound advice. I recently went to visit my sister, and my brother-in-law always brings up a friend with lupus who works, and has her own business on top of that and is in the theatre and on and on. I know he means well, and I'm used to it now. At first it really upset me though. I think he was trying to motivate me, but I didn't want to be motivated when I was first diagnosed. Truth is people just don't know enough about lupus. I believe we all need to treat ourselves as though we are sun-sensitive, even if we don't have outward signs.
I feel so much better now, and its all due to the great members that we have here on LWL. Welcome to our family!
YOU ASK ABOUT DISABILITY WELL YOU CAN RECIEVE IT IF YOUR ILLNESS IS REAL BAD AND YOUR DOCTORS REPORT SAYS ALL THATS WRONG WITH YOU AND A GOOD LAWYER YOU CAN GET IT. LET ME JUST SAY THAT I HAVE ANTIPHOSPHOLIPIDS WHICH CAUSED ME TO LOSE VISION IN MY RIGHT EYE I HAVE LUPUS AND I AM ALSO DIABETIC AND I WAS DENIED THE FIRST TIME AND I HAD A LAWYER I FINALLY RECIEVED A MONTH LATER. SO IF YOU DO APPLY FOR IT BE PAITIENT AND PRAY THAT YOU WILL BE HEALTHY ENOUGH TO BE ABLE TO CONTINUE TO WORK. BECAUSE TRUST ME ITS NOT FUN NOT BEING ABLE TO WORK SO STAY STRONG AND WE ARE HERE FOR YOU. TAKE CARE
You're in the right place to get info and vent . Lupus is very complex and no two people have the same symptoms. I was diagnosed14 months ago. I am not real sick/ I take hydroxychlor( generic plaquenil). (with food of course. I take it mainly for the mouth sores, they were terrible, but now they are gone. The meds make my stomach upset and cause diahrea, but its better than the mouth sores. The sun sensivity is bad. The fatigue is worse. I had a shop where I sold consignment formal wear and did alterations. I had to give that up because of the fatigue, but I do afew alterations out of my home. I rest/sleep 15hours a day. I think you can apply for disability but I think it's hard to get.I also am on blood thinners but I don't think there is any side effects from that.I have had 2 ear infactions and diviticulitis this year. Hard to treat because my critical reactions to 2 antibiotic and moderate reaction to 2 more. You are not alone. You can always vent here. Sorry you are not feeling well.
Hi! Welcome to the Family Living with Lupus!! Well first of all Know that You Are NEVER ALONE!! There is always somewhere someone is online-okay ! What you want to say FEEL free to speak! Venting helps even if it has Nothing to do with the blog or conversation you are in or replying to! We all have , or we are going through the same motions sometime or another. So again welcome and it won’t be easy but fight to the end, stay strong and know that you are not alone with Lupus…Beverly L.