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Posted 9/16/2008 12:18 PM (GMT 0)
Hi Friends,

I have kinda been in the dumps. First of all I don't want to sound like my familiy is mean, but I am feeling like this recent diagnosis of MS seems to be more of a deal to me than to my loved ones. Am I going crazy?

I got some info in the mail a few days ago from the MS society, I had signed up to participate in the 'power is knowledge program', where they send you CD's and literature on MS to help you understand things. I wanted my husband to read it, but he just ignores it. I had hoped by his reading it he would better understand MS, since I barley understand it all myself.

Next week I go back to the neuro doc and my husband syas he wants to go because at this appointment, my Dr. is going to determine which med I will be on. My husband has not wanted to go to any of the other appt.s with me....now I am feeling bitter about it. My daughter in law ( who is also a nursing student) has a grandparent who has MS ( has had it for 30 years) and is not on any meds and doing fine, she says. She makes statements all the time like this is no big deal and I think my husband is now brushing this all off and I am feeling like what I am going through is not significant, if you follow me.

I told them both that MS affects everyone differently and while I am glad her grandma is doing well, I am in the begininng of all of this and I will go on the meds that may slow this all down becasue I want to not progress anymore than I have to. Now they think I am going overboard, becasue there are days I look and feel perfect and then there are days my balance stinks and my muscles twitch to the point of nearly crying...and so on.

Anyway, wanted to know if I am alone in this area. I feel like just going to my next appt. alone and just keeping everything to myself and not talking to them anymore about this MS stuff.  Here I was actually GLAD to FINALLY know what has been making me feel like crap all this time and now that I know...and they know....I think they feel this is no big deal and just forget about it.  Well it is a big deal to me! I am especiually upset about hearing about this 'grandma' whos doing so well without meds! Good for her! Sorry, needed to vent. Any advise?

other than 'get over it' which is all I feel I am hearing around here?~Katie

Posted 9/16/2008 1:22 PM (GMT 0)

Katie Katie Katie!!!

Ok you have to tell people what you are feeling.  As a good friend of mine says, " So talk."  Tell your husband that his not reading the literature feels very non-supportive to you.  Tell him while you appreciate his interest in the med decision appointment, you wished he had wanted to support you on all the appointments.  You could also bring this up with your doctor at the next appointment.  "Doctor, I am having a tough time adjusting to the fact that I have this disease and my family is minimalizing my feelings by telling me I am making too big a deal out of this.  What would you suggest?  I am depressed and I may need counseling." 

Tell your daughter-in-law that you find her cavalier attitude about YOUR health future to be extremely unsupportive and that you would rather not discuss MS with her. 

I know I sound harsh but I have said these things to friends and some family members that have not supported me.  You will have to pick your support team.  You have asked if any of us has experienced this.  You are NOT alone in this.  We have all experienced this.  Unfortunately it is the nature of this disease.  If you can't see it, people assume you are fine.  I am so sorry. 

Posted 9/16/2008 3:25 PM (GMT 0)
Hey Katie

I just have to echo Gretchen's post. Please sit u'r husband down and talk openly to him. Spell out his offensive attitude and tell him how much it's hurting u. U'r daughter in law seems to be poison to u'r situation right now. I agree with Gretchen on that as well, but would take it even a step further. I'd ask her not to discuss this with my family, u'r husband mostly. She has seen the nicer side of ms and has no real experience with the pains that i'm sure her grandma DOES experience. More than likely her grandma doesn't tell her how she's feeling and when she's hurting. Would u go to u'r granddaughter and tell her?? Prob not. U'd spare her that. I'd bet she's been spared a lot as has many of u'r daughter in law's family. Do as Gretchen said, discuss this with u'r doc. Maybe at the next appt with u'r husband by u'r side. Let him hear what the doc has to say aobut it. I bet the doc will nod in a way as to say 'yes i've seen this before...it's an invisible disease to everyone but those experiencing it". Let u'r husband see and hear for himself that there IS reason for concern and need for the meds. Let him get that shock value. It could be priceless in this battle for u. Take care friend. Know u can always come here and talk and we'll be here to listen and offer support. There really is nothing like talking to those who've been there.
Posted 9/16/2008 4:42 PM (GMT 0)

Thank you Gretchen and Rhonda for your quick response. At least having this forum to come into helps me relate to others and I dont feel so isolated. I have been married for almost 29 years to my hubby and he normally is supportive, but I think he is just tired of hearing about it. I cant help but talk about it becasue it is all so new to me.

I like BOTH of your advise and I am going to take it. Yesterday while having lunch with my daughter in  law and her Mom ( whose Mom has the MS)...my daughter in laws Mom said." oh you dont need thoses meds, you'll lose all your hair! I told her that thats not true at all. Some people experiance slight thinning. But, geese, they both had to tell me how I am going to feel and how my futurw will be with MS. I just changed the subject. Period. I will NOT discuss anything further with them at all. Period.

As for my husband, Gretchen I am going to talk to him tonight. I don't know how he will respond. But I will let him know IF he is planning on going with me next Monday he has to at least watch the CD the MS Society sent me, or I don't want him there. AND...if he wont watch the CD, I will discuss things with the Doctor reguarding his lack of support.

My Mother is a retired RN, and I know she would go with me. It is just so hurtful that I feel I am not being takin seriously. I am not one to complain, usually I am the one taking care of everyone else.

I also recognize I need to put this matter in Gods hands and pray about it, which I haven't done. Duh! I thank you gals for your support and kindness.

For now, I am just going to lean on this foru, for my support until I can better understand it all and speack with my Doctor next week. I'll let you both know how it turns out.Hugs~Katie

Posted 9/16/2008 4:49 PM (GMT 0)
Hey Katie!

WOOHOOO!!!! PRAYER!!! I'm going to be praying for u and u'r family too friend! He is the one and only who can fully lead u and help u. He will. Give it to Him and just watch Him shine. ;)
Posted 9/20/2008 2:50 AM (GMT 0)
Hey Katie!

I completely understand where you are coming from. My dx is fairly new, but I have been dealing with symptoms for over 2 years. It seems to me that families and spouses in particular have a hard time coping and dealing with the ms dx too. Where we just want to talk about all that is going on with our bodies, they just want to ignore it. I don't think it is because they don't care, I think it is just that they sometimes can't "see" anything wrong with us and it just helps with their denial. I know that with my husband he can make jokes sometimes about things that are going on with me and it can come across as really insensitive. But I know his heart and it is just his way of trying to deal with a difficult situation. I will never forget the time I was crawling up the stairs because I was having weakness in my legs and he laughed at me and made some kind of joke. My mom happened to be there and she got so upset that he was making light of what was going on with me. Everyone is different. In fact, just last night my husband and I had a "discussion" where he revealed that this MS was hard on him and the kids too, and I of course agree with him, but also know that while I am dealing with my stuff, I am also constantly worrying how this all affects my family too. I do have to say that my husband is the opposite of yours in regard to the meds. He is all for me getting the meds that will keep me healthy and able bodied as long as possible. He gives me my shots and sometimes has to convince me that I do need them even if I don't want them anymore. I am sure that if your husband goes to your dr appt. he will find out how important they are in the long run.

I definitely agree that your daughter in law probably doesn't know everything her grandmother deals with. Try not to be too hard on her. It is so frustrating when others just don't get what you are going through and I would feel really angry too about my family minimalizing my dx. It is a huge adjustment and life changing and not only that it keeps on changing! The presence of MS changes the dynamics of a family kinda like a new baby in the house would. Everybody needs to adjust to it and I think it just takes some time. I wish all the best for you and your family. I look forward to hearing how your dr. appt. goes!

Kathy
Posted 9/20/2008 2:57 AM (GMT 0)
There's a great little pamphlet the MS Society has called "But you look so good".  I've given it to more than a few people.  But there are people that I have had to cut off unfortunately.  Like Gretchen says, you must choose your support network.  I don't have time or energy to spare for those who aren't supportive.  I attended a lobby day two years ago at our state legislature.  One of the legislators that we met with I knew from previous work and she knew I had been diagnosed with MS.  She said "Wow, you look great" and also talked about her friend with MS who is doing so well.   I sent her the "You look so good" pamphlet (and a thank you note!) the next week.  She called me and thanked me so much for opening her eyes to the invisible symptoms of MS and said it changed the way she would approach her friend and others with MS.  She would ask "How are you doing"? and not assume their looks tell the whole picture.  Maybe you can leave some of those pamphlets lying about....or paper your bathroom wall with them ;)

Posted 9/20/2008 3:17 AM (GMT 0)
That sounds great, Willowmom! I know I will be getting some of those! I probably put way too much energy into those who aren't that supportive. Just my nature I guess. Thanks for the decorating tip...I do have a bathroom to makeover! LOL
Kathy
Posted 9/20/2008 12:35 PM (GMT 0)
I am also going to look into getting some pamphlets, thanks for the suggestion as it will help many of us. :-)

My mother-in-law truly does not understand and even stated that she "Would hate to see her son with someone who is disabled". Obviously she doesn't know much about MS but it was also a very cold thing to say.

Hopefully the original poster will find support through friends and some family members. I try to focus on the positive and surround myself with positive, upbeat people; it helps!
Posted 9/20/2008 1:26 PM (GMT 0)

Thanks Kathy, Willowman and Capa for the upbeat support. I am going to see if I can get some of those pamplets as well.

I had a heart to heart with hubby yesterday and I have a CD about MS from the MS Society he has agreed to watch with me today. I told him it means alot to me that he trys to understand this disease. He was much nicer about everything and said he is just frustrated because I have been seeing doctors all year and then to finally get a diagnosis and not be on anything yet to treat it was making him mad.

Monday he wants to go with me to my Doctors appointment. He said he will support me. Thats the day I find out exactly how they do plan to treat me, shots or whatever. I told him I at least want him to see the CD before he goes with me to help him better understand MS and to help me determine how we are going to treat it.

You are all SO AWESOME and strong and I respect all of you. Thanks again for your continued support and I hope one day to gove back and support ANY of you when you need it has you all have with me. Hugs~Katie

Posted 9/20/2008 3:19 PM (GMT 0)

Hey Katie,

I am glad you got some good info that you have been able to use.  On that doctor visit day, can you possibly make some time for you and your husband?  Try to schedule some nice time for the both of you like perhaps lunch or a scenic walk or drive.  Allow some down time where you can talk about anything.......not just about MS.  That might be a bit of a stressful day for both of you and it might be nice if you had a way to take some of the focus off "treatment and MS". 

My husband goes with me to all my appointments.  We have to drive almost two hours for mine.  We make a day of it which is easy to do in Los Angeles.  We have lunch and go shopping or to a museum.  We go for a drive in the Hollywood Hills.  We make sure that we have some fun on a day that can be stressfull.  I always look forward to my neuro checks for this very reason. 

Good luck and let us know how it goes for you.

Posted 9/20/2008 8:34 PM (GMT 0)

Hi Gretchen,

Thats a great idea. It takes us a little over 2hours to get to the Cleveland Clinic so yes, I will bring it up to him. He just left to go pick up some food for the grill tonight. I have had yet another bad day.......so tired! Left side spasm trouble in legs, just feel 'whipped'. I have been on the Amandatine for the fatigue and it seems like some days are worse than others, so not sure how well its working, but I plan to ask the Doctor about it Monday. I was so tired this afternoon I had to lay down for awhile and I still feel beat. UGH! Feel like I can't even think straight.

I'll be sure to let him know,  although I have been hearing fatigue is something just about everyone with MS has. I will also post again when I get back from the Doctor to let you know what the Doctor tells me Monday reguarding treatment.

Again, thank you for your continued support and advise to help me get through this. Hugs to you Gretchen~Katie

Posted 9/21/2008 3:33 AM (GMT 0)
Katie, you're not alone by any means and it's most frustrating when our health is freaking us out, our spouses don't take a major interest in being there for us like we most likely would be for them. Mine says all the right stuff and does all the wrong things then. C'est la vie.

And friends mean well but they simply don't understand so they're way of dealing with it is to discount. I try to gently stand firm with them or simply not share anymore. Very frustrating.

Basically I've learned that my condition makes them uncomfortable so they cope by discounting or ignoring it or claiming they've got that same symptom so it can't be that bad... etc. Alot of prayer gets me thru the rest of it.
Posted 9/22/2008 9:20 AM (GMT 0)
This may sound crazy but, my husbands been grouchier with me and picking fights lately, knowing how annoyed and bothered I am sometimes with my symptoms. I believe that even though I don't have a diagnosis yet, the stress of my "illness" is affecting him because we don't know what's going on yet and this is his way of coping. I know in my heart of hearts that he is worried about me because he's also been affectionate and hugs me alot when he's not being hateful. It's alot to deal with.
Maybe your husbands indifference is not that at all. He may be more worried than you think. Men are funny creatures.
Posted 9/22/2008 12:12 PM (GMT 0)

Thank you D'Awesome and flutterbug. Yeah, I think my hubby is just worried. Yesterday he did watch the CD I have about MS from the MS Society and although he still seems indifferent, he wants to be with me this morning when I go to my appointment. We leave pretty soon and I will post later today to let you all know how I made out.

I guess when I think about it, my hubby has never been one to do well in medical circumstances. I know he loves me. I think not knowing all the answers really bugs us both and not knowing what the next day will bring is frustrating. I am hoping to find out about the treatments today and and hoping the doctor can help my husband understand this diagnosis better. I don't want him fussing over me, just want him to be more supportive as I don't have all the answers either.

That said, I am being optimistic today. It's going to be a good day. Together, we will do what we need to do a day at a time. My daughter in law stopped in yesterday as well and even she seems to be more understanding about it , admitting she realizes theres many faces to MS. She borrowed the CD and wants to see it as well and has offerred support any way she can help me. Shes a wonderful person, like my own daughter to me. SO THINGS ARE LOOKING BRIGHTER! turn

Hugs to all my friends in the forums~Katie yeah

Posted 9/22/2008 1:24 PM (GMT 0)

Wow!!!!

Now go and tell them both how much you appreciate their support!!!  I am so thrilled for you, Katie!  This is great.  I will be thinking of you and looking for your post.  I hope you have a positive appointment and that you come away with the strategies that puts you in the warrior's seat!  Fight!!! 

Posted 9/22/2008 4:14 PM (GMT 0)
WOOOHOOOO KATIE!!!!

I"m so excited and happy for u!! Prayer...sure does a family good huh?? I agree with Gretchen...go to each of them and let them know in u'r special way that they have made such a diff to u already and that u really appreciate their efforts. I"m so proud of them for u!! Take good care of u'rself and ur' sweet family friend. Please do let us know how the appt went today...i'm very curious! O and how about stopping in chat this afternoon?? We have loads of fun. I think u'd like it!
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