do the drugs make sle worse

Hello Aree!  Welcome to the forum!! stopped work last yr lost mobility in certain joints  If you haven't applied for SSD (social security disability) you should probably do so right away.  It seems that part of the process is the first denial . . . so, while that sounds like spinning your wheels, it is eventually part of the approval process i  had 2 rounds of rituxan(chemo drug) helped for about 6months but I cant afford another round and question if it will help.  If it helped the first time, it will likely help more as it builds in your system.  If the pause between treatments is way longer than the suggested dosing, you are essentially starting over.   Often drugs are available at low or no cost if you can do a little leg work.  Here are some links . . . hopefully one of them will help get you some assistance with the cost of your meds. http://www.pparx.org/Intro.php http://www.needymeds.com/ http://www.themedicineprogram.com/ http://www.rxassist.org/default.cfm http://www.peoples-law.org/health/charity-care/special_drug.htm The methotraxate and other drugs cause me to feel isolated and not even want my husband near me.  I'm guessing that this feeling of isolation is not related to the drugs, but more about how you feel about yourself and how bone tired we get.  Pain and fatigue rob our bodies of essential brain chemicals that would normally give us a sense of well-being as well as allowing us to interperet the world around us correctly. I lie about the pain to seem stronger and yet I limp and swell every where  I try to hide a lot of my issues too.   But I give periodic updates to hubby at appropriate times, like " I'm really having a hard time sleeping for the last couple weeks because the pain is not being controlled and I can't get enough pillows  in the bed to support everything properly, etc. etc " Our loved ones NEED to know what is ACTUALLY going on with us . . . but they don't need a blow by blow all day, every day.  If you give information periodically, your family is more able to support you and you may feel less isolated.  Men, espescially, don't read body language and clues very well . . . they can interpret as "drama" or not notice it at all.  If you say you don't hurt, but then you limp and swell . . . he may think that you actually don't hurt, but that you have a limp.  So you have "trained" him to stay out of the loop.  If you don't share, no-one can help.  Guys REALLY, REALLY want to help.  If they can't help then they walk around like the problem doesn't exist . . . that is how they make their world work. I dont want to be loved physically but sill desire to help everyone...have I lost my mind?  No . . . you have not lost your mind.  Those whith chronic, debilitating illness can understand exactly waht you are saying.  why do I lose my balance, and drop things? There is actually a current topic about that.  See https://www.healingwell.com/community/default.aspx?f=29&m=924179&g=928377#m928377   It seems that lots of us have issues with falling, balance and dropping things.  does anyone attribute the meds to physical imbalance, isolation and low sex drive  at least for me, was happening MORE before meds.   The isolation and low sex drive seem to have a LOT to do with how we are feeling about ourselves.  You have had this disease a long time to have still not come to terms with it.  There is a way that you learn to live with it . . . to co-exist with it.  To pace yourself so that you don't cause a flare.   You certainly need to grieve for your old life . . but to make that grieving period, but then we need to pick ourselves up and figure out how to make all of this work.  That means trying meds (with a positive attitude) and trying different combinations and types of meds to find out what works for our own individual body. That can take a very long period of time and then the disease process changes and we have to readjust frequently.  I'm glad you found us . . . if you stick around and read and post, you'll find that by-and-large people here are very positive.  The last few days we've had an unusual amount of posts where people are just having a really hard time.  When the length of daylight shortens it can also rob us of the brain chemicals that I was talking about above . . . so that might be part of the bigger picture.  Glad you found us!!! Blessings!

Oh Aree . . . You are SO welcome!!  I'm so glad that my post was helpful.  It is SO hard to word things in a way that reads what was intended.  I always worry about offending someone with the "surf attitude".    I have learned over the years that my emotional energy is something I must guard very wisely.  I can be just as drained from worry, shock, guilt, grief as I can from working too hard physically.  I have learned LOTS of little tips here at the forum.   Each little tid-bit adds up and lightens our load.  Its kind of a dance we learn. You also might enjoy an essay called "The Spoon Theory"  You can find it at butyoudontlooksick.com     If you print it out, it really helps explain to your hubby and others how you really feel. Blessings!

Aree, I don't have anything to add to the wonderful things that Rosie and Pat have already told you. Aso I'm sure you can see this is a wonderful forum full of supportive people. It can be such a relief to know you can come to a place like this and be among people who truly understand and care. You have really been through so much with your meds and your symptoms. I hope you can get some help with your meds and that you can find something that gives you some relief. Take care and I'm so glad you joined us.

Hi aree, I'm carol. I see you got great folks here helping you out. I'm having a little bit of brain fog right now so I'll just say welcome to the group. It sounds like you really need a place like this to share what is going on with you. I know it has been a God send for me. So one more big welcome and a huge HUG!

looking forward to getting to know you

carol

Hi aree,

I havent posted lately because I haven't been feeling well and have been going thru a time of testing etc. And yet I know when I begin posting again, it'll be like I haven't been gone. All of my friends here understand that this is how it is. "Friends" in the "real world" would be offended if I didn't uphhold my end of the friendship. That gets too hard sometimes and makes friendship hard to maintain while we have flares and lots going on. This forum has been a vital part of my learning how to be "okay" with having a chronic illness.... I can deal with it in a healthy way, even with humor and do the best things to keep my self as healthy as I can and try to better myself withing the limits I have now.

I'm really glad you found us at what seems to be the right time in your "lupie life"

xoxo emmie

Wooooo Hooooo Aree!!! Great!! I'm so glad someone was watching out for you!! Blessings!

Thanks sharentrials for the warm welcome I am looking forward to looking up the website you made reference to. Every day I look for some way to cope with the illness and the battles that are related. I am so sorry to hear about your dx and you are correct I feel like through all of my inner pain, my families & friends have confusions that make things so much more difficult and therfore this -as you say is a great place for understanding.

PREDNISONE 20MG, METHATRAXATE 17.5WEEKLY, ACTENOL, HUMIRA, DIAZEPAM 5MG, WARFARIN 7MG, VICODIN ES OR DILAUDID 4MG FOR PAIN, FOLIC ACID, IRON, NEWEST DRUG RITUXAN

Hi Aree,

   Another welcome coming your way! There's really nothing for me to add to the great advice and support you have already been given. This forum is awsome, isn't it! Everyone is so kind and helpful. It's great to have a place to come where everyone understands or can relate to what your dealing with.

   Hang in there and please keep us updated. You will be in my thoughts and prayers.

                                                                Babs

Yes Aree . .. we had a topic on that recently. Lots here said that they felt a rise in symptoms during their period. . . . so you are not alone in this issue. Some members increase their pred or anti-inflams a bit (with doctor's approval) just before and a couple days into their period. But when you say that you are weaker . . . I wonder if your iron is low. You should bring that up to your doctor. Blessings!

Barbara, you just made my heart bleed for you. That means you can smile for just a little while because I will hold your end of the burden. Last week I was told by my md a company would help pay for the rituxan (which works temporarily only) but any relief right. The real joy? I thought was when northwestern told me I could be a part of a cyclophosphamide/cytoxan or cell cept -stem cell study I did some research today I saw all the possibilities or side effects of cancer. To hear you mention the above makes me think we are doomed either way. I quess thats why I pray, do as much lying down as possible and wish I had the answer. I stay inward because others dont understand and always seem to say some surface left field loving off the point remark...but you barb I understand. stay positive seems like a good thing to say but a more realistic statement is lets wait painfully and see what happens.
hoping you feel better, Aree.

Barbara Lee said... I Aree: I feel isolated and alone. I feel that I've ruined my family's life style and I'll just become a bigger burden to them. I know that they love me but they may be happier without me around. Oh dear (((((((Barbara))))))))), you have it so rough sis. I'm sorry you feel so alone . . . you really do have so much going on. Of course you haven't ruined your family's life style . . . and it IS hard for them . . . but the hardest thing is seeing you so ill with no way to help fix it. Of course they would NOT be better off w/o you. I've heard it said that "if Satan takes your joy, he has taken everything". Well, I don't know if I can say that here . . . but you are the King's Kid and you are precious. Don't accept a thought like that. You can come here and vent and scream and yell . . . but don't accept an ugly thought like "they'd be happier w/o you". When your time is done here they will all miss you SO much. I'm going to log off soon and I will pray for you dear one. I worry about you!! Prayers and hugs and blessings!

* tears while reading your post * You are WAY upbeat for all you have to deal with. You have taught us how to do that dance. Barbara, your daughter is at a most awkward part of her life and will be for another couple/few years. . . she's probably compassionate one day and resentful the next . . . sounds very normal for her age. If they took us too seriously they would stop their lives and be stunted for their deep desire to help us. . . . but it still hurts. My kids used to tease me . . . I had no diagnosis, I just thought I needed more sleep . . . and I'd lay on the couch and tell them . . . don't bother me for 15 minutes . . . well they turned it into a taunt . . . they'd snide back and forth to each other "15 minutes, please, just 15 minutes" Well . . . it is still a family joke, but they really do feel bad now for having made fun of that. And they remind me that it wasn't just 15 minutes . . . *sigh* But they would bend over backward now . . . If I need something, they would each help all they could. They do mature eventually. . . and I think that is a safeguard built in so they don't get too caught up in our adult issues. You are welcome Barb . . . you are always here for the rest of us too. Prayers and Blessings!