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:

Tex is right on and as an 80's lady you probably view life fairly similarly- meet a challenge head-on and overcome it. Heck, from very early age we are brought up to think that you fix what needs fixing. When it comes to medical stuff, many of us were brought up to think that modern medicine & its doctors can 'fix what ails ya'. Sadly, some of us will have to learn this is not always true, even doctors have trouble not being able to make the diagnosis & cure

"Acceptance" can be a very bitter pill to swallow. Some of can learn to accept that we can't overcome everything; some of us struggle with not being "in control"; and some of us never quite get to that point. This is a journey with an unknown destination (says a gal who plans out trips, has a GPS, keeps to a schedule and gets nutty if I have to change course midway...)

To me, it sounds like your DH is worried about you running out of options for treatment. Men get more afraid about our situations than we are. They want to fix us even if we know it isn't fixable.

They don't understand how we could be willing to accept doing nothing if there is something out there that "might" help but might give us an even worse disease.

I made up my mind months ago that I wouldn't go on Tysabri because of a gut feeling. It had nothing to do with statistics or numbers of cases of PML. It was me just feeling it wasn't right for me. I can't explain it anymore than that. I did have the test done because my neuro ordered it and I'm negative for the antibodies. I guess I could do Tysabri, but I'm not going to do it.

I would sooner do more IVSM and risk my bone density. Others are more afraid of the steroids. We each have to decide what is right for ourselves. I had great success with IVSM in recovering from a very debilitating attack. I know other people who didn't feel that steroids did much for them.

Unless the test for the JC Virus isn't covered under your insurance, you might consider just doing it. It's just a blood test. It might end the whole discussion about Tysabri if you are positive for the antibodies. Even if you are negative for the antibodies, it would also just shut everyone up for awhile.

It sounds like you are OK on Copaxone right now so there isn't any rush to change anything. There are new drugs on the horizon that might end up a better option. There is also more time to see what happens with Tysabri with more years on the market. I have friends who found Tysabri to be a miracle and others who didn't see a lot of improvement and went off of it. It all seems like a crapshoot. What works for one, doesn't work for another.

You sound very frustrated with family support and at the end of your rope. I've been there and I have found therapy for me to be far more beneficial. I'm learning coping strategies for myself and how to better handle those around me. I also have someone to just listen to me and support me without condition.

I hope your situation improves and you feel better soon.

:hug:

TX, your post made me cry. I did have another heart to heart with dh and he said almost exactly what you said. He even cried while saying it. He says he hates seeing me in pain and there isnt anything he can do about it. It was good for him to finally tell me what was going on in there. He said what if the pain gets so bad the pills dont help? I said, well I wonder if maryjane is legal here... and we both laughed really hard. A friend of mine with MS does smoke that, and she said seeing as I dont smoke she'd send me some special brownies :D We both needed a good laugh. Felt good. As for the jc virus test, I will just do it and get it over with. Im used to needles now, no biggie I guess.

What a great great thread, filled with wisdom and actual help. I'm so glad you managed to have a real good talk with DH, Kittylady!
My husband is dead, for nearly four years, and I know it would be so much help to me if I could talk to him. My son won't talk, daughter-in-law just echos anything son does or thinks or says. No other relatives except two grandsons, ten and 7, who are smart but without life experience in the things we are talking about.
My only talk help lately has been a young woman priest, half my age, at the Episcopal church. She and I seem to have had very similar experiences. She deals a lot with illness, too, her mother's undiagnosable (even at Mayo) disease, her own illnesses, her children's illnesses. I will, I fear, become dependent on her--and she is not my daughter or anyone who owes me help. But for now, she is what I have. And she is a gift. So for now, hallelujah that she is there.

I had a counselor and she was good to vent to after Irv died, but now our conversations come at life from totally different points of view.
She is much closer in age to me than "Mother A". but her "answers" are not mine. I find I have already tried everything she suggests, and found them no longer helpful.

I'm so glad that you and DH had another talk and things straightened out better for you two. I can understand how people lose their tempers when they feel helpless about a loved one who is having a hard time. I've done it myself to my DH. I felt bad that I did, but I couldn't seem to control myself. hugs

This is an amazing forum. So much more soul leading (can't think of a better term, psychological leading doesn't sound right) than on the other forums I go to, which are the Porphyria and Myeloproliferative forums at other addresses, not on Neuro talk). Completely different mood. We help people on the Porph forum, but it is primarily with addressing "triggers", not much about healing mood. On the Myeloproliferative forum, the same: discussion on drugs, side effects of drugs, etc., very little about mood. People with MS have a harder time, just in general, in getting physical help, so they must find a "soul" way to cope, I find. It looks to me definitely that MS people have a terrible time finding "drug" help that really works, or if it works, it just causes havoc with side effects. It seems to me that almost no help for MS in Medicine has been found and/or verified. Always a new drug coming out (heard of a new one yesterday for MS) but always side effects which are very difficult.