[KittyLady]

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 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!!

[SallyC]

(((((Kittylady)))))

[jprinz99]

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.

{{{hugs my friend}}}

[Twinkletoes]

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.

[Sparky10]

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

Originally Posted by KittyLady

How pathetic am I??

You aren't. They are.

[Kitty]

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. And others seem to think that everyone else's life revolves around theirs. Double .

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.