Looking for lupus support

[momcani1]

Hey I was just wondering if any one here strives with Systemic Lupus. It can be totally alinating. Especially because we don't look sick. People think we are making it up. LIke I would want to do that. Just checking to see if there is anyone else here who need that support.

 

[invisiblefootprints]

Hey I was just wondering if any one here strives with Systemic Lupus. It can be totally alinating. Especially because we don't look sick. People think we are making it up. LIke I would want to do that. Just checking to see if there is anyone else here who need that support.

I have SLE. Bless you! Feel free to PM me anytime if you don't want to post publicly. I'll be glad to listen & provide you with support.

 

[momcani1]

Wow thank you for your PM and you are so right. No one knows what it is like to be exhausted from vaccumming or to tired to shop for groceries. I hope that we can be there for each other as I don't belong to any other sle support groups.

 

[invisiblefootprints]

Oh yes. Finally, someone I can talk to. My family doesn't understand either. But I imagine it is hard to grasp how we feel, partly because we look fine...except for the red "rash" across our nose & cheeks. My 15 year old daughter helps me more than anybody else. I work a very fast-paced high-stress 40 hour a week job & come home to all the housework, cooking, laundry...basically everything. I am just like you, I can't even go to the grocery store by myself anymore & the vacuuming...by the time I get done with just our living room, my arms & hands are shaking so badly from muscle fatigue that I can't even lift a glass of water & my legs are like noodles with concrete blocks attached. I constantly have sores in my mouth & frequently in my nose. I suffer from migraines, hip & back pain, constant low-grade & frequently higher fever, plus I have increasingly worsening Raynaud's. Just handling refrigerated chicken long enough to take it out of the package & put into the pan or skillet makes my fingers numb & hurt. We need to find a way to organize our housework so that we can do it as effortlessly as possible. Maybe we can help each other figure out things that will help, or at least support each other in our struggle to maintain.
Bless you & I look forward to talking more with you.

 

[momcani1]

Can you imagine I quilt and crochet and knit. I don't work becasue I just don't have the stamina. I have already had foot surgery and it's looking like the knee is next. I am impressed that you are still able to work. I have a 15 y/0 son 13,8,and4 y/o daughter. They don't do much for me in the way of helping. My husband is always wanting me to go and do stuff that requires tons of walking or all day stuff. He say's we can just get a wheel chair for you. I said if you want me to beat you with it sure.

 

[invisiblefootprints]

My hubby get aggravated with me for being on the computer & not doing housework. My fingers don't have the problem, it's my arms. My hubby wants me to go places with him, too. I try, but most of the time, I wind up sitting somewhere. But I keep trying. As far as work, I don't have a choice. We would lose everything plus our health insurance if I quit.

 

[momcani1]

I understand. I can't get my disability becasue my husband is working and makes too much money. I don't know what I would do without the Lord.

 

[invisiblefootprints]

Me, too. I know He is the only reason I am able to get out of bed & go to work everyday. I'm lucky in the respect that my job is all computer work...no muscle stamina or repetitive movements of my arms required. Also, the work of our Precious Savior. He put me in the job! Prayers! I'll see you later.

 

[momcani1]

How do you deal with things like family trips and such? My famiy always want to go places like the outdoor public pool, amusement parks and stuff liike that. I don't want to alway's tell them no and they don'twant to do without me. I can't do all that walking and the sun is one of my triggers. If it wasn't fo rthe Son I don't know what I would do.

 

[invisiblefootprints]

Good morning, or whatever it is where you are. Sun is a big trigger for me, too. I just can't do it even with sunblock. I break out into terrible rashes that won't go away all summer long. Also, if I'm out in the sun for any length of time, I get a migraine. I get depressed because I feel like I can't do anything with my family unless it's indoors & even then it's limited to how much walking I have to do.

 

[momcani1]

My husband keeps bringing up stuff like getting me a wheelchair and stuff. He hates when he has to take the kids places I just can't keep up. And when I give him the evil eye he gets all what did I say. I tell jut don't say. I have to take methotreate once a week and it still makes me so sick and weak.
what treatments are you taking?

 

[momcani1]

Once a week I have to take methotrexate. I am still unsure if it's worth it the way it makes me feel. What are some of your meds. issues

 

[invisiblefootprints]

I'm sorry. I've been sick...or just had a terrible flare. I'm not sure which. So far, I'm not on anything. I just take NSAIDs for pain & inflamation. I should be on steroids, but I told my doctor I didn't want to take them. He said he would wait on me for a while, but he would only let my sed rate go up another couple of points before he would strongly suggest I change my mind. So, I've been a bad girl...I've not been back. I really need to go because I can tell I've gotten worse. I just feel so bad. I just don't think I want to hear any bad news right now.

 

[momcani1]

I tried to take steriods but it turns out that I'm allergic. I don't know which is worse. The one I'm taking or the allergic side affects from the steroids.

 

[invisiblefootprints]

I know a couple of people that are on steroids for other things & the are very puffy & swollen. I'm one of those people that think the less medicine you take in your lifetime, the better off you will be. There are just too many side effects that come to be known years down the road & I'd rather take my chances.

 

[momcani1]

Have you ever been able to find those super wide brim hat's I have looked but I can't find one. I have heard of a company that makes a uva/uvf resistant clothing but man is it expensive.

 

[invisiblefootprints]

I've not heard of that. I mostly look for ways to stay warm. I just wear sunblock, long sleeves & stay indoors as much as possible. We used to go to NASCAR races, but I can't go anymore. Between the fatigue & the sun sensitivity, I'm miserable before the race even starts.

 

[momcani1]

Hmm it bet. They always have those races pm the day's where there is record breaking heat. I love to garden and I have to have it adone before 10am. It get's plenty hot here in Ga. really early. I went to bed early last night and I must have slept throught he tornado that went through here. LOL Well what other hobbies do you have.

 

[invisiblefootprints]

I love to cook, bake, read & of course...sleep! LOL!!! I like to take pictures of nature, but I don't have any fancy camera or equipment. I used to love to take walks, but right now my muscles just get so fatigued that I can't walk far.

 

[momcani1]

Oh I love to cook and bake as well. I have to admit that my oven makes this hard for me. But in the warm months I get the grill out and we have some intereting meals. I'm trying to lose weight and some how it's easier with summer foods than winter. Maybe becasue fruit is in season and cheaper who knows? Do you go to lups support groups in your area?