Hello....I am new to the group, and have reached out as I am in much need of support. Dxed in 1998, I have managed my disease as I am sure all of you have here, with all the courage I can muster. My story is long, no different than yours. I am a widow and my children live at great distances.
The Lupus has been in active flare now for over a month. I have to work 3/4 time. Although I qualified for disability, I can't live on why I earned on soc sec, so I returned to work, although I work in the best of understanding environments (I work for a religious institution-very supportive)
My immediate issues are a developing arthritis of my right hand (yes my dominate) which I have now been told could develop into additional deformities of my hand. (already have limited use of thumb and index finger and wear a hard cast) I am 54 years old, and am also a visual artist. If this was not enough, my opthamologist has dxed glaucoma, with optic nerve damage in one eye. Too much news for one week in the center of flare....and I feel myself shutting down into depression.
I start seeing my therapist again this week. I feel so alone and isolated, weary and tired of this. I am a fighter, and my fight is escaping me. I am looking for people to talk to when this happens. Even now, I am breaking into crying because of this isolation. Please give me your thoughts, your stories, so I dont feel so alone.
I manage on steriods nonstop, for the last 7 years, as well as all the other junk one must take to live a life with this dx. I have resisted methotrexate but may now have to go on it, with the glaucoma complicated by steroids. I fear getting off of them as they have kept me functional for a long time.
Welcome to the group! This group has helped me feel less alone and I'm sure it will help you too.
I'm sorry you got so much bad news in one week. :( I'm glad you're going to see your therapist again and that you have such a supportive work place. It's hard to find an employer that is understanding. I'm scared to report my lupus to school (supposed to report any change in health status) because I don't want them to tell me I can't finish the nursing program.
Try to take this one day at a time. Finding a new medicine to work is frustrating, but you'll find one that does the trick. What type of therapy/treatment are you doing for your RA and glaucoma? I'll be praying for the best for you!
First, welcome to the group! I joined a couple of months ago because I needed to know (even though my family tries to help and understand) that there are people out there who are not only willing to be supportive, but who are going through exactly the same things I am. Thank God I have found that here, and I hope you do as well. I am 24 years old and I was diagnosed with Lupus back in September. I experienced symptoms for a few months before I was diagnosed. Many nights my husband had to lift me if I was sitting down or help me get dressed…things like that because I couldn’t move and didn’t understand why. I’ve got a better hold on my Lupus than I did in the very beginning, but this really still is the beginning for me! There are many days that I am just so angry that I have this disease. I am currently taking 5mg of prednisone, 1000mg of CellCept, and I’ve started following a Paleo diet trying to get my body under control. On top of my lupus, I’ve had pleurisy for 5 nearly 6 months. It’s maddening not being able to sleep on my side, laugh, yawn, or exert myself in any way. I’m young, I know, and I want to refuse to let the disease control me. This is no way to live and I often feel defeated. You are lucky to have an understanding employer. I do as well, and it’s a tremendous help! Anyway, don’t hesitate to reach out when you’re down. You are NEVER alone! That’s the biggest lie you’ll ever hear. Hope you start feeling better soon. Last thing, I would recommend starting an immunosuppressant such as Plaquinil, CellCept, or Methotrexate. Steroids shouldn’t be for long term use. Good luck to you
Please try your best not to feel alone....you aren't. This is a place to share your story and ask questions without judgement. I am truly sorry for your loss. I also know that after the loss of a loved one, every "loss" is more difficult to muster. Dealing with losing certain functions of our body is frustrating and depressing. I have been diagnosed with fibro, but am awaiting diagnosis of what I know is lupus. ANA+, photosensitive rash, fatigue, depression, swelling/aching joints, arthritis in my lumbar spine, migraines, and concentration/word recall issues. Luckily my rheumatologist has me on low dose plaquenil and prednisone daily.
I am a 35 y/o RN who was in what seemed to be in "PERFECT" health a year ago. I am married (2nd time) with 4 children ages 13,12,2,and 1. I had to quit my job due to the fact that I all of the sudden felt like I was dying and couldn't move. I am enrolled in a nurse practitioner program that starts in June and even wonder if I can finish....what does my future hold?
Like you, I saw an opthamologist for the first time last week who diagnosed me with dry eye syndrome and borderline glaucoma (large cupping .5 and .6, and borderline NFL in both eyes).
I came home and all I could scream is "I'm done!"....over and over. This is it...all I can take! I am 5'5 and now weigh 96 lbs, which makes no sense because of the steroids I eat like a pig-and all bad food! No one in my circle of life...besides my husband understands or even wants to. I hear "if you keep dwelling on it your just making it more than it is", and " you need to work, or do things-get moving".
I again feel very sorry that you are experiencing these physical and emotional side effects. I wish I could hug you in person, but I can't.....so consider yourself hugged from me. Please use an outlet-someone you can talk to, write your feelings on paper, or do it here where people are loving and understanding. Please keep us posted on your well being.
You are not alone, I totally understand your situation. My 2 daughters live close by, but the majority of my family live over 14 hours away. This group has help me express my feelings with those who really can relate or understand. I have cried as I would type out my frustrations, it does help. It's great that you started back seeing a therapist. Find joy in the simple things and find a local lupus group in your area that you can get involved in and get information. I will keep in in pray, take care.
Welcome! You will find great friends and understanding here.
I can completely relate to your sense of isolation. I have list most of my friends to this disease because of the fatigue and unpredictability of Lupus. Most of my friends were very active as I once was. I am 46 and now on disability. I used to own my own company and now try to live off the pittance SSDI gives and it’s very stressful. But I feel at least I get something. I have been flaring for about two years and its impossible for me to work right now. I really want to though. I get sooo bored at home!
I used to be scared of the methotrexate and other meds too but have found them to be much more helpful than harmful and I know that the serious side effects are not the norm. I have tried just about everything. I was diagnosed with Lupus, Rheumatoid Arthritis, Sjogren’s, Severe Allergic Asthma and a few others. I am currently on prednisone, methotrexate (which I absolutely love), Plaquenil and Orencia. I would try at least the methotrexate to see if it helps you. If I miss a dose I can totally tell in my joints! There are meds to help lubricate your eyes and mouth too. I am starting Restasis in a couple of weeks. I had been using lubricating eye drops and eye ointment at bed time but need more now. It’s all a cycle. Good days are around the corner!
It feels so good to vent, cry and complain to others that are in the same boat. It has kept me sane and actually cheers me up knowing I am not alone in this journey.
Tina, have you heard of punctual plugs? I got to the point where I needed eye drops every 15 mins. My optho offered to insert punctual plugs. They are fantastic! I probably put eyedrops in just once a day now, but sometimes I can go a few days without them. There are days where I need them up to 4 times, but not often. Usually when I am more fatigued that normal, or when using the air conditioning a lot. I highly recommend them. You can have them out again if you don’t like them.
Thank you so much for understanding...and the hug.
I have been on steriods for years, as well as plaquinel. I hope to get off of them soon and dr is thinking methotrexate, I fear it because it is a chemo drug....and I get sick to my stomach so easily.....can anyone tell me about that?
thank you again.....
Kimberly said:
Hello,
Please try your best not to feel alone....you aren't. This is a place to share your story and ask questions without judgement. I am truly sorry for your loss. I also know that after the loss of a loved one, every "loss" is more difficult to muster. Dealing with losing certain functions of our body is frustrating and depressing. I have been diagnosed with fibro, but am awaiting diagnosis of what I know is lupus. ANA+, photosensitive rash, fatigue, depression, swelling/aching joints, arthritis in my lumbar spine, migraines, and concentration/word recall issues. Luckily my rheumatologist has me on low dose plaquenil and prednisone daily.
I am a 35 y/o RN who was in what seemed to be in "PERFECT" health a year ago. I am married (2nd time) with 4 children ages 13,12,2,and 1. I had to quit my job due to the fact that I all of the sudden felt like I was dying and couldn't move. I am enrolled in a nurse practitioner program that starts in June and even wonder if I can finish....what does my future hold?
Like you, I saw an opthamologist for the first time last week who diagnosed me with dry eye syndrome and borderline glaucoma (large cupping .5 and .6, and borderline NFL in both eyes).
I came home and all I could scream is "I'm done!"....over and over. This is it...all I can take! I am 5'5 and now weigh 96 lbs, which makes no sense because of the steroids I eat like a pig-and all bad food! No one in my circle of life...besides my husband understands or even wants to. I hear "if you keep dwelling on it your just making it more than it is", and " you need to work, or do things-get moving".
I again feel very sorry that you are experiencing these physical and emotional side effects. I wish I could hug you in person, but I can't.....so consider yourself hugged from me. Please use an outlet-someone you can talk to, write your feelings on paper, or do it here where people are loving and understanding. Please keep us posted on your well being.
Welcome! We all share, and really understand this disease, as we are all dealing with it. So, poor out your heart-we will listen, and share what we know. I have alleviated many of the symptoms by finding out what I am allergic to, and staying away from those items. Just a thought, if you haven't had any allergy testing done. I am also seeing some stability from taking Vitamin D3, 5000 mgs a day. I really think it helped keep me together when we got kicked out of our home in January. I am also living in a house now that is very unfinished, (no kitchen, and my husband who thought he could get the cupboards in hasn't been able to, and we can't afford to have a pro put in) and while getting depressed sometimes, have managed to stay afloat for the most part. I hope things look up for you soon, and that your flare calms down. This is probably the worst illness I can imagine anyone could have, since you are up and down constantly. If this symptom doesn't show up, another one will. OK, got to stay upbeat! Feel better! And just stay on board here.
