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.
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 http://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!!!