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645390 tn?1338555377

Hi all!

Been almost a year since I've posted anything. Haven't been here and am just starting to read through a few posts. Lots of posts this year, not sure ill b able to get them all in ! :-)

Life has been good this year. Nothing too major, thx goodness. Oldest graduated high school , licensed cosmetologist and is now started college. Good suff. Couple funerals, couple weddings...life. My attitude is still mostly in the positive.

I think I'm here just to dump some stress, if I may?

Saw MS neuro, for my 4 month check yesterday, which turned out to be a year! I "stopped" going to all my docs this year.  Just got tired of it, and needed a break from medical crap. I still am having monthly IVIG infusions  , although I skipped the last 3 months, primarily from summer and $

So, I know I'm slipping downwards. There doesn't seem to be anymore remission, of the RRMS part. Just slow, steady progression.  So doc basically said that, what I already knew. Bit of a bummer. She didn't order an MRI, even though it's been 2 years since my last.  Basically she said there r no other alternatives for me at the moment, and the IVIG is the best way to go. An MRI wouldn't change the course of treatment, so we don't need to spend ur money:-) It is not the 1st line of treatment by any means, but is helping w at least infections.  I have been "healthy" sickness wise since I started. I basically have very little immune system.  Disease has a VERY long name. Common primary variable immuno defiency , something like that.

I'm going to start PT in 2 weeks, since I am walking like a crab to the left, and balance way off. Foot dragging, all that good stuff.

Emotionally sometimes I feel really angry, particularly w myself.  I try to  " will myself" into doing things people without MS can do. Like I used too. My 2 older boys get me very irritated thinking I do NOTHING all day, but lay on the coach.  Basically calling me lazy, without using the term.  I'm frustrated w lots.

Hubby stops working next month, as his company is closing at the end of the year. We knew it was coming. We will b ok, but sure adds worry, mentally and financially. I qualify for medicare since I'm on disability, but didn't take it at the time, since my hubby has good insurance for us.   I'm lucky to have that choice and will b looking I into it.

Ok, if u have read this far, thank u.  Feel like I have a complaining novel going on here.

So, that's my story these days...hope all is well with all of you. I will b going back and reading some posts. Maybe I'll stick around awhile this time :-) seems I come now, when I need to think about "MS" for a bit. I try to ignore it most of the time, but then when the doc says some things, makes it all come back up to the forefront.

XO,
Michelle
11 Responses
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Avatar universal
Hello Michelle,
No need to feel bad about complaining. This is certainly the place to do it as we are all happy to listen.
I'm sorry you are having a rough go of things.  I like you try to push through a lot of things like I use to and then end up paying for it. My 2 boys ages 21 and 18 are pretty much like yours. They are so use to me being a rock that they don't get it when I have to go to the couch.
I'm sorry that your disease has gone past the rrms stage and is progressing.I think now is a very important time for you to listen to what your body is telling you and rest when needed. You need to be kind to yourself.
I get the anger as sometimes I feel robbed of the life I envisioned for my hubby and I now that the boys r older. I resent the disease. So I give it a bit of time then I try to let it go.
What is IVIG?  Is it ms meds through IV?
I am still working but have just cut my hours back as I had no quality of life when I was home cause I was too tired from working.
Sorry to hear about your husbands company closing. Will he be able to find something else?  Finances always seem to be a worry.
Well I have never corresponded with you before, but I certainly empathize with what you are going through. I am sending HUGS your way.
Regards, barbr
Helpful - 0
Avatar universal
Hi, Michelle! So glad to see you here!

Complain and moan all you want--this is a good place for it. I do understand getting just sick of doctors and appointments. I did that for a whole year a couple of years back, and I don't think I'm any the worse for it. Sometimes we just gotta do what we gotta do.

How are those handsome boys of yours? When first we met, the little guy was maybe 5? And now he's a big guy too. Sigh.

I'd love to keep in touch. Please feel free to PM me anytime.

ess



Helpful - 0
645390 tn?1338555377
Barbara,
Thx for sharing some of ur story. Yes, I think my older ones r used to being their rock as well, think I need to have the " talk" w them again.  The MS talk that is...or better yet, let hubby take it on. Here is a link to IVIG, it is killing 2 birds w 1 stone for me.  Very very very expensive. 36,000.00 per month, per infusion. No joke, it's disgusting. Thx god insurance picks up after 6000 deductable.

http://ms.about.com/od/treatments/a/Intravenous-Immunoglobulin-Ivig-For-Multiple-Sclerosis.htm

I think it used to b used as a more common ms med, til "cheaper" and newer ones came in.

Thx for ur good wishes on hubby's job. He is fairly marketable , hopefully. And should work out. Gotta stay positive. Anyway, hugs back at u and nice to meet u!
Helpful - 0
645390 tn?1338555377
Essy!!!
How r u??? Ankle?? Life??all? I will PM u.

Yes, my baby is now 11. Middle school! Don't know how the heck that happened! They r 11,12,15 and 18. He was 5 when I came here. Wow time flies...when ur having fun?

Miss you and am SO happy to see you. Hope like has been treating you well these days

XOXO
Helpful - 0
667078 tn?1316000935
Good to hear from you. Understand the anger and the financial worry. I turned my anger at my Cancer in on myself because there was really no one to be angry with. Glad to hear from you.

Alex
Helpful - 0
987762 tn?1331027953
COMMUNITY LEADER
Welcome back!!

I can't believe it's been that long since you last posted, i am so sorry to hear your dealing with so much......... a problem shared is a problem halved, such an old saying but it's apt, so vent away babe, we hear you!

I think it's very understandable to sometimes feel quite vulnerable about what you have to deal with but keep in mind that we can inadvertently end up perceiving more negativity about our selves and from people close to us, than we otherwise would, when we're not in such a fragile state of mind. It may actually really help you and your family, to sit down and have that talk with the kids about how your MS effects you now, how you have to conserve your energy etc etc etc

The more kids understand what's going on, the better they seem to be at accepting things and adapting to a parents medical situation. It's definitely been my experience, lol my science geeky 16 yr old who's got the social grace of a bull in a china shop, even picks up my signs now.........um seriously, if you knew him, you'd know how huge a deal that is, i'd talk to the kids and let them surprise you :D

HUGS............JJ

    
Helpful - 0
645390 tn?1338555377
Hey (((Alex)))

How r ya my friend. I see u r still having major health issues. I'm so sorry. U r one of the strongest women I know. I wish I could do something to help u. I am sending u gentle hugs and good healing thoughts ur way,
XO,
Michelle
Helpful - 0
645390 tn?1338555377
Hi JJ,

Nice to see u and the purple flower next to ur name :-)

Yes, the boys need to b spoken to, and to realize what I can do easily and not do easily anymore. Day to day is different as well, which is quite  an adjustment for everyone.  My younger ones seem to be not too bothered w my actions, or less there of. They aren't  yet teenagers, so the worse is yet to come !

I love ur saving, a problem shared us a problem halved. Brilliant!

Thx for your thoughts,
XO,
Mchelle
Helpful - 0
667078 tn?1316000935
Michelle,

   I am doing better than a lot of folks. I am not that sick. I am on great pain medication so I am doing better than others. I am still mobile. I am training a puppy to take Polly's place. The only thing that is bad is I will probably not see my sixth decade. My Cancer just keeps spreading. So far I have stayed one step ahead. It would be nice to have a remission. But the MS is so stable the MS Specialist does not want to see me for two years and I am not a DMD. The Amgen 386 or the Chemo seems to stop my MS progression. I have friends with my Cancer have Colostomy bags and lung drains. I have neither so I am happy.

Alex
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Avatar universal
Good to see you here!
Helpful - 0
572651 tn?1530999357
Goodness Michelle, that is a boatload of words to drop here and I hope it lightened your load.  I imagine you continue to push very hard, regardless of what you think your family believes.    Are you sure they think this or are you less than honest with them about how you really feel and allow them to come to their own conclusions?

Please, stop beating up on yourself.  It does no good- you should read my latest blog about that very topic. You have to save yourself first before you can be any good to others.

I wish we lived closer and could settle in over a nice cup of tea and just talk and laugh a bit.  
hugs, Laura


  
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