My heart just goes out to you sheena. I wish I had a magic answer for you right now, but alas I don't. Cherie often comes up with some brilliant ideas so I'm praying she will be able to offer some good advice that you can use to better your life and situation. I have only a few things of value to give...prayers for peace, prayers for steroids and my biggest hug with a squeeze all the way from the far north. Be kind to yourself

Please Sheena, don't feel ashamed. Not EVER!

We all go through rotten times but it seems that you've had more than your fair share recently.

Have you thought of using the ER closest to you? I'm sorry if I'm outa line on that because I don't live in your country, so things may be different where you live. I personally think you need steroids, but then I'm not a physician. If you lived near me I'd be dragging you off to the closest ER to be seen by the Neuro on Call.

Is this Neuro that you've talked about the only Neuro that you've seen and if not..... is the one you saw prior still an option for you to consult? How long would it take to get into see some-one brand new if you could get an urgent referral?

I'm so sorry that I can't be more help, but I hope some-one else can come up with the magic words that will solve anything.

Please promise us that you'll never feel ashamed about coming to the group for help again. NeuroTalk is primarily a peer support group, and that's what the members here do best......support and advise.

Big cyber hhugs coming your wway Sheena, and I hope you get some answers soon.

((((((((Sheena))))))))))

I do hope someone can help you find resources to provide care for you and your dd and that you will find a doc (even at ER?) who can help

you remain in my thoughts and prayers. I wish there was something more practical I could do.

do keep posting and letting your friends here brainstorm on possible ways to get you the help you need

Sheena

Please don't ever feel ashamed to post and vent here....we all understand and would never pass judgment. I hope you can find some local resources to help you out - someone suggested the ER which might be your best bet since the hospitals have social workers who can intervene and help you find the help you need. I'm keeping you in my thoughts and prayers. Don't give up!!

How are you doing today, Sheena? Please do check in as we are all concerned and thinking of you.

Sheena, can you go to a different neuro? Maybe this neuro is not the best fit for you. You are newly dx'd and shouldn't be sitting there at home in such pain and agony.

Ditto to this, Sheena. Don't allow this Neuro to let you suffer, unnecessarily...OK?

Sheena, whatever I might think of to say just seems so patronizing, as I know you have been thinking long and hard on all of these issues and your options. The problems you are faced with are hard ones, and no matter what solutions WE come up with, they will either seem not desirable, ideal or feasible. That is because there are just no easy solutions for you right now.

It seems you have tried to tackle this in the right priority sequence. You have left the decision about Ty still on the back burner, and I think that is the right approach, at for least a few more months . . . UNLESS IT clearly starts to cause problems for you. You do not need to think about this right now otherwise . . .

For some of us, the first year after being dx is often a very disease-“active”, at the same time as we are trying to adjust physically & emotionally, AND the drugs are ramping up in our system. All things combined, this is probably the hardest time you have to face with this disease though, so you have to keep that in perspective.

The first thing you’ve tried to tackle is your fatigue, which is the right course of action. You haven’t found what might work for you yet, but hopefully you still will by asking around about the various options. One thing that comes to mind, from my experience in those early years, is depression (you certainly seem have enough reason to feel that way at the moment), which can contribute considerably to fatigue. Are you on antidepressants THAT ARE WORKING for you, and have you got any resources to get some one-on-one counseling? I spent my first 3 yrs in counseling, and I know it can be helpful.

Do you observe any patterns to your physical and emotional well-being? Is it possible that some of what you are going through is hormonal, either PMS or peri-menopause? I started peri-menopause at age 39, and have always struggled emotionally from my monthly cycle. If there are patterns to your mood/energy swings, there are ways to combat that as well . . . so maybe put some thought to it if you haven’t already.

Your neuro may be either very narrow-minded, biased, inflexible, or inexperienced . . . but then again, maybe he knows something we don’t. Like I said previously, for many of us the first year is HE!!, so perhaps what you are going through is “normal” by his standards. The only way you could find out for sure though is to:

- be very forthright (perhaps on here, or in counseling) about what is REALLY going on with you
- get counseling to see if different coping mechanisms might help you through this time
- to change neuros & get another opinion on your options

If you can get into another neuro, perhaps he/she will let you try steroids too, to see if that helps.

As far as your options for getting some help around your home, if you choose not to take a risk in that regard (home services), what are the consequences of that decision . . . vs. . . . the potential consequences of giving it a try? It sounds like you are currently unable to take care of your valuables, yourself, and your daughter. How much worse can it get, even if someone does steal something from your place? Can you hide everything of value, and then if the odd thing goes missing, does it really matter that much?

The way you are living right now has got to be bringing you down majorly, and affecting your daughter too. So they steal a vase or toaster . . . by the way you described that you are currently living, you probably can’t see where those things are in your house right now anyway. If you have to go to a home to be taken care of instead, you will bring your suitcase and a few material items . . . everything else will have to be given away anyway. What have you REALLY got to lose by taking a risk?

Your daughter is one of my biggest concern at the moment. I know you have been wrestling with this decision for a long time, and I still think you need to wait to make anything “permanent” in that regard. Remember, this first year is the hardest . . .

In the meantime, I imagine any decision is going to affect both of you in many, many ways. However, I don’t think this current situation can continue on like this for much longer, so you may be forced to pick the best of the two situations. I know your daughter’s father is not a “great” option either, but is there more stability for her there, at least with her Grandparents?

All of this makes me think of an expression my mom used to have . . . “how do you eat an elephant? . . . one bite at a time”. You can NOT tackle all of these problems at once, and trying to do so will become so overwhelming, you won’t be able take care of any of it properly.

For a long while, when I was really overwhelmed, the only way I could make a decision about anything was to write it down . . .

I made a list of the issues that I had had CHOICES on, and prioritized them, in the order of what was most important, or most achievable. I listed each potential decision at the top of it’s own page, and made two columns under the title. I wrote the pros on one side, and the cons on the other (I can't show that here, but any way will work). I valued each of those pros and cons, with a number from 1 – 10, with 10 being the “most important” (you can have five 10’s on one side if that is the way it works out). Add up the scores, and make a decision on that basis, i.e. ...

1. Get home care:

PRO’s
- sanitary ----- 10
- a place my daughter can bring friends ----- 2
- pleasant to live in ----- 6
- etc
TOTAL XX

CONS
- invasion of privacy ------ 5
- fear of theft ----- 3

TOTAL XX

I think that you need to get this out of your mind and on paper, so that you can begin to see the “forest for the trees”.

I am sorry things are so hard for you Sheena, and I wish you had more support. It always seems that things hit hard all at once in our lives though, for EVERYONE, and remember that this ONLY A MOMENT IN TIME.

Cherie

Sheena,
Sorry to hear about your doctor, he must be related to mine. I have seen 3 doctors before I've given up. I don't know whats worse.. an incompetent doctor or just a mean, rude doctor that basically just wants you to suck it up. I was just diagnosed in Feb and I have to save all my energy to do one thing like laundry and then take a nap. I am trying to relax now because I know my sons will be home from school soon and this is their last day and then summer begins for them. I feel like such a slacker mom but I was fine before all these symptoms crept up. I hope your doctor wises up and helps you!
Monique

Still getting worse. Pain spread other sx too Can't post much. Went to ER w/kid. 6 hrs later was told no steriods due to too close to infusion by a PA not DR. Nuro could have told such - I did get the impression he would never do steriods if on TY since told I would have to learn to live w/this. I can't - never - too bad

Got pulled by cops at gas station for being too sick to drive - had to wait 1.5 hrs for ex to pick up. Got lucky - guess I could have got DWI.

back to bed

thank u all for you help.

sheena