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.
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.
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.
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!
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
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.
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
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,
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,
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.
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.