Checking in after the 1st infusion- not bad that night, next day was awful, but feeling better as each day passes- problem that I am having is that my family is “over it”- I suppose we are all “over it”, but the stress of this illness clearly doesn’t just effect the patients… The communication and regularity in our home is gone- I barely have the strength to put one foot in front of the other, but I have tried everything I can to keep routine (have a beautiful 10 yr old and a husband of 20 years) in our home, but my husband has recently had a severe turn about- went from supportive to resentful- spiteful even… The strain (financial, emotional ect) has really done a number on us & he has shut down- completely- don’t know what to do or say- can barely help myself! Won’t go to therapy- found out that he had an affair, & I think that he just can’t deal with it any more… ;-(. Hopeful has turned a bit helpless! Any words of advise??
Hopeful, great big gentle warm hugs to you!
I have no words of advise, but wanted you to know you are heard, and not alone.
Keep making that 1 step at a time. Any step is a movement forward.
Thank you four your kind words- I remember someone once telling me “when you get confused, look down at your feet and that is exactly where you are supposed to be”-
Thank you, I hope that you have a day filled with light and peace…
Remember that men also go through change of life....when we often see men buy the sports car, start seeing younger women so they feel young, life is not at half over etc. I am not saying that your husband is going to do these things just be aware.
Yes it is extremely hard on our families and why any decent rheum always ask about how your family is doing. They get that if they are not doing well neither will you eventually.
there are some really great books on this subject or go see a counselor to help you is very helpful.
I am personally very sorry that you must go through this, most of us have at one point or another. That does not make it any easier or not take away stress and pain it causes. Best thing i found it keep lines of communication open but do not force it...give your husband space, maybe suggest he go on trip with just guy friends. Something he uses a stress buster..fishing, sports etc.
Get yourself into counseling too and they should be able to help you understand what is going on with your husband....reading books is just cheaper way. Counseling gets to heart of it much faster.
again i am so sorry but happy drugs are working. like others have said, we hear you and we understand and are behind you! take care
Oh my!, stay strong? I 'VE never been married so am not giving advice about the marriage but for you and the stress that you are going through. Try not to change who you are! I know this will be hard to do , but to step back for a moment is what you have to do for your daughter. She is at the age where life for her is adjusting to that Pre teen life,and we as adults have to understand that they (pre teens),will go through all kinds of emotions , along with your health, your stress is the factor! So focus on the two and just stay as strong as you can, and deal with your husband to the best of your ability.i hope this help you feel some what okay… My prayers go out to you…Beverly L.
Big hugs to you! I know how you feel for most part. One of the biggest reasons I joined the site was for the emotional support because of the lack of support I get home. I’ve had chronic pain for 10 years now and my husband was helpful at first, now I’m the enemy. I Try to stay tough and not let the disease take over our household Because if I don’t, I get to hear well you’re sick all the time.
I have a couple suggestions that have recently works for us. The first is talking to him about his feelings which is difficult when we hurt so much. He may need an escape from it all. Maybe he can’t stand to see you in pain and not be able to fix it?Possibly a night out with the guys weekly, or the weekend as someone suggested. I was resentful when my husband did these things but he came home happier and more open to ways to solve problems around the house. Since he won’t go to therapy consider an inexpensive weekend out of the house where you could have fun but also have some time to talk. For some reason going to a hotel for a weekend made my husband a totally different person and we were able to talk with less pressure. I hope some of this helps I’m always here if you need a friend. You’re in my prayers.
I am sorry that you are having such a difficult time. As you are going through the grief of learning to live with a chronic, debilitating disease your loved ones are going through this same thing. I do recommend often is that if your family is willing, take them with you to the doctors office with you or even perhaps counseling. I don't know what is available as far as support groups in your area but they could be very helpful. This is not a time to give up and as I can attest it will pass. Sometimes we, when not feeling well, overreact to what is said. Sometimes it's better to not react immediately.
Please reach out to someone close.
Gentle hugs,
DeAnne
Would you mind telling me what infusion you got and why?
I was asked by my rheumy to participate in a investetiomal medication - it’s called the Embody program- it is for severe active lipis. It was a hard decision too make simply because the fear of the unknown! I’m still on Methotrexate, plaqunil and cellcept, but the last time I was on that regime it took about 6months to finally work- but this flare is far more active and she does not feel comfortable with waiting until it kicks in- as I am getting much worse (disease activity wise). I did a lot if research on this medication and the study itself. I felt comfortable t that it is in phase 111- I also agree that I need to at least give it a try- has 2nd infusion today- has a few side effects, but the day awfter was very difficult physically. My doc said that having a reaction was promising, meaning that I most likely the real medicine as opposed too placino., if your lupus is severe enough and you have tried every combo of meds that you can do, perhaps be open to a study- this one is showing to be very promising
(78%) are showing decreased disease activity with in the first 12 weeks of infusions.