How is everyone feeling today? You can be honest here, and you don't have to say "just fine"... Unless you are

Support
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Thank you for responding! I really appreciate the feedback. Last night I slept in my recliner til 3am and then went to bed and slept pretty good. Doctor said to take Aleve for ten days and that should help! I feel much better today, however if I exert myself too much I have pain and shortness of breath. Ugg!
I think the reality of this condition is beginning to hit me. I have been symptom free pretty much for about 10 months after being diagnosed. Have had some fatigue and weight gain ( prednisone ) . I am 65 years years old and have been relatively healthy so I guess----could be worse!
Grateful to be here!!
Maria



Ann A. said:

Maria, Maria


As soon as I read your name my brain starting singing songs from West Side Story. I am old and a bit nutty - but yes I have experienced pericarditis. I have had it be mild enough to go to work for all or some of the day. And I have had it be severe enough that I needed to be to be hospitalized. I used to complain about the pain in my knees until my lungs started hurting from pleuritis. I remember saying, “Okay God, I got. Walking is optional. Breathing is not.” But I complained about the pleuritis until I experienced pericarditis. I can clearly remember promising God that if he would let my heart expand and contract freely that I would never complain about knee pain again.

I am so sorry that you are experiencing that! Pericarditis has made me grab an ER doc by his lapel and beg for, demand Prednisone. I have taken so many NSAIDS that if you say the name of any one of them from aspirin to Voltaren an ulcer appears in my stomach. Pleuritis and Pericarditis are what taught me how to sleep sitting up after packing my entire chest and back in ice.

Over the years I learned that it helps me to get the Prednisone as soon as the symptoms start. For the past few years it has been the case that if I can get them very early, I only need a short course, 14- 21 days.

These cold rainy days as we move into spring is prime time for me get it - actually anytime the season is changing. But I also have a problem with it when the big summer storms head this way. When the barometric pressure drops. I am in trouble.

How are you managing? What NSAIDS are you taking. Do feel better if you sleep sitting up? Does icing help? Does anything else help?

Ann A.


Maria said:

I have been experiencing symptoms of pericarditis, however it has been mild, but will not go away! I really do not want to go back on prednisone. Hopefully anti-inflamitory meds will help!
Has anyone experienced pericarditis associated with their lupus?

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Celeste,
Ii also have my son, who is disabled and losing his vision and hearing loving with my husband and myself. His son, 19, is also with us! Not saying it is not stressful, but they treat us the way we allow them to! I understand setting boundaries is difficult but only wa to save yourself!!
I will support you !
Maria



celeste said:

Well friends I’m going to vent,I feel like crap,I’m in such a bad lupus flair,and I know it’s because my stress level is out of control,"29 yr old daughter and my 8yr old grandson have been living with us on and off for 5yrs,she has used our home like a revolving door,changing our house rules to fit her life style,she has not worked at all in the 5yrs,sleeps until noon,paid not rent,brings home a guy we never met in the middle of the night and he never goes home,she just moved him in to our down stairs without permission,I have been in so many arguments with her,she doesn’t tell me to F off,but she might as well,my husband is a fireman so he sleeps at the station on his shift and she chooses those times to hassle me,"I just couldn’t take it anymore and told her to get out,I always felt guilty about making her leave because of our grandson,but I finally moved her out last weekend,she has sucked the life out of me,I’ve struggled so hard to get well,I tried and tried to tell her we couldn’t support her,she needed to get a job or go back to school,she just wouldn’t get out of bed or clean up her and her child’s mess,"ever"my house is 2800 sq feet,to much house for me to take care of on my own,some how is has this way of making me feel like every single thing she does or every mistake she makes is my falt, she has this entitlement about her that’s scary,she acts like we owe her…on top of that the guy she moved in just spent two yrs in the Oregon state men’s prison for domestic abuse…omg,I’m so stressed out about it…so any words of wisdom friends?? I am tough loving her…if I don’t, I’m afraid of what might happen to my health,"I just need to lay it at gods feet and see how he guides her…xoxo celeste

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Thank you Maria for the advice,I’m feeling like I shouldn’t of posted my little rant about my daughter,that’s not what this is site is for,"“sorry everyone”"I need to just keep that stuff to myself…I’m usually really good at stuffing my problems…thanks for your support…celeste

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I went to the doctor today because I am soooooo fatigued and having a hard time walking. I almost fell asleep waiting for him to come into the room and then again waiting to be called for lab work. I am sooooooooo absolutely tired of feeling tired and hurting and feeling like I am a burden to everyone. That is how I'm feeling tonight...too tired to fix dinner so it's a peanut butter sandwich again..

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I love to hear all of these replies. We are all at different points on the spectrum of stages of the disease and HANDLING this disease. It is a relief to know that here, we can be ourselves and really say how we feel without pretense.



BTW, I am stitching my first quilt (queen sized). I have to stop every day when I can’t take the pain any more. I have to bend, squat, use fine motor skills. When I’m finished with it, it will be known as my “F@&k Lupus Quilt”!!! I have Lupus, but it does not have me…today… Tomorrow, I’ll need the grace not to let it rule me then, too. Day by day and hour by hour is how we live.

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Oh Ann ,you did not offend me in anyway,I’ve just been having so many issues right now,things will get better,my husband is taking me to Hawaii for my 50th,we leave may 26 to june 3rd so Im happy about that,I really need some time away…god bless you celeste

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This place is really an encouragement for me.I dont think theres anyone in my little world that understands.But for at least this last week,when I would start feeling sorry for myself, I came to the site and would read the post. I got encouraged, knowing there are a lot of others that feel like me.thanks everyone, for being you..Robin

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Hi Julie,I’ve had lupus for yrs,""but the last 5yrs have really kicked my butt,"I’m I angry about it?? "“Hell yes I am!!!”"some days I wake up and cry…I live in a very small town,most everyone knows each other in some way or another and I have tried so hard to hide what’s going on with my health,not only do I have to wear braces on my hands to do most things,my left knee is killing me,my dr said,“go get a cane or a walking stick to take some stress off the knee…hell no!! I can’t do that,”…omg…I went and got the cane…everyone here gets pissed off about lupus,that’s why we’re all here…I hope things get better for you…look up the spoon theory,some times it helps me get through the day and helps family understand…you can buy a poster on the lupus site…celeste

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I want to just scream at my hands "STOP HURTING!" The sores on the ends of my fingers are a constant reminder that Pain Lives Here. The sore spots along each finger, and the massive inflamation of each middle finger's knuckle is like my hands flipping me off. Now the sores are starting at my toes too, again. The numbness and tingling are so wierd. My Rhumey put me on a blood thinner to see if it would help. So far, no. But I read up on it, and it looks to be Raynaud's. The redness, the often whiteness, the sores, the numbness, tingling, and sometimes slight blue hue. My toes and nose are always cold, as are my fingers most of the time. I wonder if that's how the small slits on each nostral got there.... Well, to be honest, I am so sick and tired of being sick and tired. I hate not having control of my brain, my emotions (I cry at the drop of a hat sometimes), and having Surprise pains. Like the one that goes from my knee to my ankle on the inside, with constant throbbing at the ankle. Hurts like crazy when I walk, but hurts all the time too. Which is hard enough when trying to sleep. Every time I turn or adjust, sharp pain wakes me from either the ankle or my right hand. Oh, and my Rhumey says it's normal that the right hand has been inflammed for so long that the skin and tissue there is overly sensative. It's fun...not. The stupid tendons pull in that hand with sharp pain, making me cringe. I try everything: band aids, liquid second skin, tiger's balm, etc. Nothing really helps. The second skin stuff just keeps my fingers from getting infected, which is good. I feel like a cow poured into my pants because of all the swelling.

Oh, and I read some where that it's not supposed to attack our spines. Did they mean the nerves? Because the tendons and muscles are absolutely buggin'. Neck too. Face is okay feeling today, but haggared and ugly.

My Rhumey put me on a big dog antibiotic to try to kick out what is in my chest. It's not working. The CAT scan showed scare mass on the lower parts of my lungs and some major inflamation at the tops. I get sharp pains and have trouble breathing, especially when it's cold. I do cough, but not often. The labor breathing and light headedness worry her, so she says I need to go to a Pulminologist. I do not want to do that. It makes me want to cry and scream. The idea of more doctors, more meds, more tests, more poking and proding is just unnerving. Yet I know I need to do it. I hate this. I hate having to put on the happy face every day and say I am fine, when this is not fine and I don't know when fine will ever come. But I do believe it will. I believe in a day with out pain or worry. I know I will be able to ride a bike again and go hiking again. I want that day so much that it's what pushes me through days like the ones I have been having for the past week or so.

I feel like I am loosing it, at times. And then I realize I am depressed again and need to get back on my meds or it will devour me. Yes, I know that sleep is my friend, but the world seems to be determined to not let me sleep. The sun is too bring from the windows, the neighbors too noisey, the pain to much. I want to just drink three shots of whiskey and call a lights out. I catch myself getting so stressed out that I say things like "I should just kill myself now and be done." I get so mad when I say those things, because I know it's not just in passing. I have no right to take my own life or any other. Life is a gift and I appreciate mine. But it's so hard sometimes. It's just so hard. And they don't get it. They just don't get it. I keep telling myself "It could be worse. There are those with worse pain. Worse lives. Worse diseases." We all have our own battles. Having you guys makes this battle bearable. Thank You. And if someone wants to rub my neck or my constantly throbbing head, that would be great. ;) xo

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Wow! Whenever I think I have it bad I read some of these posts by my fellow lupus friends. God bless all of you. Take it one day at a time.

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Sounds like the patches help you. A good idea to get more, if you can. Have you tried the patches available at the Drug Store? I don't know what is in the patches you get, but do totally know that people with Lupus just HAVE to sleep, and have to do anything it takes to get it.