What can I do
 

Today I got a huge blow to my great family support theory. My dh and I were talking about my MS, and how my neuro wants me to get that jc virus test. I told dh why should I Im never going to take Tysabri. So whats the point. DH tells me that maybe one day I'll change my mind, and I stood firm and said NO. He then starts arguing about what happens if/when the copaxone isnt/doesnt work anymore, then what you going to do? Become a stiff two-by-four, unable to feed yourself or hold the grandkids? I told him lots of MSers dont do dmd's. Its not mandatory! I can survive without them. I'd do symptom management. Then he flew off into a raging rant about if I dont do what the neuro tells me to do, the doc could very well tell me he wont care for me and then what do I do. This doc continues to see you even after we lost our insurance and if dh can get insurance theres nothing saying that I can be covered under it. He continued in some rant about medicare and blah blah blah. I tuned him out, I was angry with him. How dare he tell me to just bend over and do whatever the doc tells me too. Dang it, its MY body and MY healthcare, nobody elses! My own husband wont stand by my side, who will?!?! I have 3 kids, and only 1 of them said they would stand by whatever decisions I make. Out of 4 people, only 1. How pathetic am I?? My oldest child doesnt even want to hear about how Im doing. She's currently not speaking to me because appearantly I told her too much info :mad: I cant work anymore, Im home alone all night, dh works nights, and basically home alone all day, while dh sleeps. Im going crazy here, and just want to call it quits.... on everything!!

:circlelove: (((((Kittylady))))) :circlelove:

Kitty,

I feel so badly for you! It sounds to me (playing devil's advocate here...) that your husband is frightened and has been doing a lot of worrying & stressful thinking about how your MS might impact you & your family - and he has been hiding this worry from you very well.

Perhaps you both might want to consider it less of a "all or nothing". By this I mean:
why does the MD want you to get the JC test? Are you (or the MD) considering taking a drug that JC is required for? After all, you could always take the test later on, if you decide to investigate going on X drug at some point. Is your current method of dealing with MS not working anymore for you. For example, mmy DH can't seem to stop grasping at strws to "make me better" - he struggles with accepting that MS usually progresses regardless of what we do. He also wants things to be predicatable and not lose me (his biggest fear, I suspect).

Insurance (or lack of) is very real and very scary to a lot of people. I suspect your DH is terrified of not being able to one day afford/access the care you may (or may not) need. Talk about a burden to carry around inside for anyone! You or him.

I humbly suggest letting things quiet down for a day or so, then asking him to sit down and talk. I wouldn't talk to him (as in try & convince him to go your way) - but to sit down and share -> both your fears, thoughts, desires and plans. You are a "team" in a marriage and {at least for me amy DH} we need to remind each other of this every once in awhile. Communication is vital - especially when dealing with the unknowns of MS.

After all, nobody invites MS into their lives; it just inserts itself and demands we work with it.

Trust I say this to be helpful and caring, not to tell you what to do.:hug:

{{{hugs my friend}}}

Please don't "call it quits!"

I sympathize with you and am sorry your family isn't a more cohesive support group. Uncertainty is a hard thing to wrap your mind around, and makes it so difficult to plan for the future.

Scarlett O'Hara had the right idea: "I can't think about today or I'll go crazy! I'll think about that TOMORROW!!!" :)

Sending hugs for you, dear lady. :hug::hug::hug:

This is one conversation. Just as MS can change from day to day, maybe another conversation on another day is in order.

You aren't. They are.

IMHO, your family is reacting out of fear. Fear of the unknown.

Like others have said, I wouldn't base how I felt on this one conversation. Some folks just talk a lot......feel the need to let everyone know exactly what they're feeling at any given moment. :rolleyes: And others seem to think that everyone else's life revolves around theirs. Double :rolleyes::rolleyes:.

If any of their speeches require a reply I would just explain that it's YOU that has this disease and whether they like it or not or agree with your course of action it is what it is. They can either get on board or stay behind.

I'm praying for you, KittyLady. I cannot fathom having to "qualify" myself to anyone.....let alone family. :hug:

[QUOTE=Sparky10;914186]This is one conversation. Just as MS can change from day to day, maybe another conversation on another day is in order./QUOTE]

[QUOTE=Kitty;914190]
Like others have said, I wouldn't base how I felt on this one conversation./QUOTE]

Sparky and Kitty, I wish this was the only conversation my dh and I have had like this. This was just the one that really got me so upset. He is always saying that if I dont take the dmd's that Im not trying hard enough to get better. Get better? Really? This isnt cureable. Im not going to wake up one day and be all better! Ive had this for 20yrs, and dh and I have been together for 10yrs. He thinks the old fashioned way that what the man says the wife has to do. Well, Im an 80s girl and we dont roll that way! I didnt speak to him at all for the rest of the night until he went to work. We spoke briefly on his break, but this morning he acts like everything is ok, well its not ok with me. I just dont want to talk to him about it just yet.

Don't you just hate that "do unto others then move forward" attitude? :mad: Because he's had his say, the show's supposed to be over.

Having never been in your shoes I don't know how to get him to understand or even consider your side.

You might consider getting the test done to save the peace. You'd like him to change his thought patterns, right? You might change yours some day. :)

I have no idea what is going through dh's head, but perhaps I can add a little male perspective on this. We are raised from a very young age to take care of women, to provide for them, to assist them whenever possible, and to cherish and nurture them. As much as the idea of the disease progressing scares you or any of us who have this disease, it terrifies him probably even more because it is totally out of his control. MS is something that can hurt you and make your life harder that he cannot change, cannot fix, and cannot cure. That is immensely frustrating to a guy, because we are raised with the idea that we should be able to do all of those things for our wives. We fix things for you...we solve problems...we are there when you need us. Yet with MS, he can't fix it...he can only watch and support you. He is probably terrified of losing you to a disease, terrified of seeing you in pain or unable to do things for yourself, and frustrated at his inability to do anything to change that course.

Now as to how he goes about showing those feelings or discussing your treatment with you, perhaps he isn't great at showing you those feelings, but if he loves you, they are there. When he hears you talk about not taking a recommended med or treatment, he probably feels like you are not doing things that you could to stave off the progression of the disease...which again feeds back into the helplessness he probably feels. So he argues with you to keep taking the meds or to do what the doctor says. I could be totally off, but I have been in a similar situation, and I know those feelings all too well.

I hope maybe you can figure out a way to communicate with him and not have to argue to understand each other. Sorry you are feeling down, and hope maybe getting a different perspective shines a little sunlight into your situation. He loves you...he just has a strange way of expressing it sometimes.

I knew there was a reason why we keep you around TEX. Thank you for your insiteful post..:hug::cool: