Conversation Between xani's mom and slim

9 Visitor Messages

  1. Hey Slim-
    Haven't heard from you, hope you are feeling a little better. The holidays can be so depressing when you don't feel like being cherry. Then everything is just amplified because you have to put on the I'm great show for everyone else's benefit. Been out of touch my self for a bit, but trying to get it together again now. Hope to hear from you soon.
  2. Slim-
    I know just what you mean about the doctors. For awhile I was seeing six. Now I have it down to four, but just the dr appointments can be enough to wear you out. I am actually feeling a little better, but I broke down and have been taking the narco the last couple of days. I really try to keep from taking it as often as I can, but I had had enough and thought I deserved to be out of pain for a couple of days. What kind of operation did you have on your neck? I get the same thing from doctors about my age, both of my knees need replaced but they don't want to do it until I actually can't walk any longer. They say the knees only last 10 to 15 years and I am to young to start replacing them. In some ways I think the people who get diagnosed when they are older have it a little better. Our bodies are still supposed to be functioning properly, so the doctors don't want to do anything that might be worse on us later. Hope you are feeling better.
  3. Reading your message i see we both have been having a flare so i know what u r going through. I think the headache you have been having is a lupus headache i get them often and it makes me cranky and i cant think clearly. My neuro appt. went well im healing but he still wants me to refrain from bending my head as much as possible since the x ray shows some movement of the bones in my neck above where he operated and that worries him since im so young to have had this surgery in the first place with that being said i dont have to see him again unless i have a problem (everyone claps ).Yes one less doctor too see. I have been dealing with a lot of depression .My friends took me out for my birthday which was on 10/31 and every time a picture was taken of me all i could see is my fat steroid face which made me really depressed but i couldnt let that show and spoil the going to go take a muscle relaxer and pray this pain goes away for both of us. slim
  4. Slim-
    I am actually on here quite a bit, since I can't work anymore it gives me something to do that doesn't required a lot of effort. I don't know how you work and raise three kids, you must be absolutely exhausted. I hope you have a good husband to help you out. I have never heard of lyrca. I take oxycontin twice a day and have vicodan for if I need it for pain, xanaflex muscle relaxer, and etodolac for inflamation. Is this a pain med or an immuno supp? I am not so great my UC has been horrible this week so of course I got a nice lupus flare to go with it. I have also had a mild headache for a couple weeks now. If I could just sleep more than an hour at a time I know I would feel better, the pain just isn't letting me rest. Hope everything is going as well as possible for you, and I hope your new meds work. Let me know
  5. hi heather just recieving your message now and im doing a little bit better just tired of the pain and flare but what can you do. I have to see the neurosurgeon to see if i am healing properly since my surgery so im keeping my fingers and toes cross so we will see how that goes. hope you feel better soon but twritehe general feeling of malaise can be hard to shake and that sucks .I am tired and i need to log in more but when i feel bad i kind of shut down and between my job and the kids i have almost no energy. enough of me wining write back and let me know how u r. By the way im on a new med Lyrca 50mg three times a day to help with the pain. Have you ever been on it if so let me know either way. non painfull hug from me to you. slim
  6. Hey Slim-
    Just wanted to check in see how you are feeling. I haven't been on line in a week or so. I don't know if it is the weather change or what but I have had a terrible headache, and just general malaise. Not feeling so great, hope this finds you in a better place.
  7. hey Xanis mom just getting ur message now glad u liked the virtual hug .I have three girls ages 10,12 ,13 and a boy age 8 . Glad to hear u r a mom because u get that unconditional love no matter how sick u r. Kids are resilient but they still need reassurance that we will be ok at least thats how it is at my house. It sounds like u have a great daughter. you have yourself a nice painfree night. slim
  8. Thanks for the hug slim, everyone needs one of those. My daughter has been a big help to me, and she still is but she is sixteen now so there is a lot less time for talking with mom.
  9. hi slim here i am 32yrs.old soon to be 33and i was diagnosed about 5 years ago with sle and the last 2 years have been the worse especially this year which sucked to say the lease. I have sun sensitivity, joint pains, SHOOT pain all over, migraines, lupus fog, fatigue, dry red itchy and painful skin on my hands. i am currently taking plaquenil, cellcept, lyrica, prednisone, fish oil, iron, vit. d, restoril, flexeril, . I also was very active and this illness has changed all of that. I also get depressed but i try and shake it off because its just not healthy plus my husband wont let me stay depressed long and he is my biggest supporter. I know how it is to feel like you are a broken record and that u are whining everytime you speak about how u feel but its how we feel and if they dont really want to know then they shouldt know. People, friends and family dont get it because we may not look sick on the outside. hope u feel better soon , welcome and here is a soft hug from me to you.
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