@ Rest Area 51 Paging ALL MS Newbies Mar 27 '11

[gomer]

Welcome to Rest Area 51... a special haven or your New MS family for newbies Dx'd w/MS in recent days or years and newbies at . Being a newbie can be as scary and lonely as being in limbo, The BIG question answered, means many more new questions and decisions.

If you have not taken a advantage of our Rest Area 51 lately, PLEASE grace us with your presence, take a break from the MSuper hwy and let us know how YOU, a member of our MS newbies family is doing. For those who stop in and say hello each week, thanks.

Hope everyone had a great week!

Pull into a nice cozy shady parking spot Pitch a tent or just lay out a blanket and enjoy the crisp cool fresh air . Feel free to share your ideas, experiences and support to your fellow newbies. Relax, you are among friends that understand. We have a virtual soap box, feel free to vent anytime.

Remember:
Have a QUESTION? Please don't be shy........
The only dumb stupid question.....
..........................is the one NOT asked.

How was your Week? ........
...Good I hope, Any Dr. apts tests etc?


What does the new week have in store for you?
....Any Dr. apts. tests etc.

Spring Has Sprung NOTE
Next weekend I plan to hit the Cherry fest in Washington DC. I hear the peak is going to be about the end of this week and hope to hit peak color next Saturday for picture taking.

I will TRY and remember to start next weeks Rest Area 51 a couple days early, but if I forget, please keep this thread going and alive.

Gomer It's time to Go Go on my GoGo!

[inmoni5]

This past week has been quite productive however I am still paying for my Thursday house cleaning binge! Seems that shakey is my new best friend with ms. It's been cold here in wonderful Wisconsin, last night we even had snow showers. UGH! Come on SPRING!! I did see a few Robins this week so that means it's coming.

This week I will have my first appointment with an MS Specialist on Thursday. I'm kinda curious of what it will be like. If she will know more than my neurologist (I'm sure she will) Maybe the correct way to phrase it is, will she be able to tell me more than my neuro has? I have so many questions, I have a list a mile high. lol

Hopefully she can give me some help to get rid of my symptoms or at least help with them.

Hope everyone has a wonderful week. Take Care all!! HUGS.

[KMCangel00]

What a week it's been!

You might remember I've been having some trouble with my job as of late - well, I finally worked up the nerve to request a meeting with the CEO of my company this week. I sent him an email from my home email so that it couldn't be traced (he has an open door policy, but the "women in power" sometimes have sneaky ways of making work more difficult for you if you go over their heads and directly to him) - to his (incredible) credit, the next day he sent me an email to my work account and made the meeting sound like his idea - like he just wanted to meet with me and see how I was doing since my diagnosis

So, I met with him and he was very interested in what I had to say - I had to make sure it wasn't a b**chfest, or project a whiney image or anything. I kind of just told him that my circumstances had changed, I really was going to have to work on lowering my stress level at work, and I wasn't sure I could do that in the position I was in, based on what my direct supevisor requires me to do for her. (This is the only part where I really kind of let him know that my supervisor abuses her power and also gets a kick out of intimidating all of us, etc...)

I actually tried to "demote" myself from my current position to a less demanding one earlier this week - my boss basically wouldn't let me. Long story short, as long as I'm working for this woman, in particular, I'll be doing all her personal secretary crap AND all her work in addition to all of mine. In other words, she wouldn't let me demote myself, because then she'd have to start doing her own crap. Can't have that.

So, anyway, the CEO was wonderful. It is a smaller business with about 35-40 employees. He basically told me that as long as I was willing or able to work, and he had a company, I would have a job. Also, we are too small to qualify for FMLA, but that as far as he was concerned, he would follow the same stipulations FMLA would, meaning that I could have the time I needed, when I needed it, no questions asked (regardless of if I had the time on the books or not).

As far as my immediate supervisor was concerned, he told me that the next time she crosses a line, to come directly to him and he would deal with it. Oh yeah - and when I mentioned not being in the position to be able to do overtime right now (as in, I am EXHAUSTED), but basically being mandated to do so - he said that if I wanted to tell them my doctor told me no more OT - he'd make sure nobody gave me any crap.

AND he's writing a big fat check for the MS walk. AND he's getting a bike team together (avid bicyclist) for the MS ride in the spring.

SOOOO...that worked out pretty well! Since the meeting my stress level has decreased immensely merely from knowing that it can.

I'm officially off the Rebif titration pack and am giving myself the 44 mcg shots - those "flu-like symptoms" sure hit me like a ton of bricks this weekend. I did the first 44 mcg shot on Friday night - and I was down for the count ALL DAY yesterday, with a fever until about 6 pm - I thought the symptoms were only supposed to last a few hours? If not, I'm gonna be pretty screwed on Tuesdays, Thursdays and Saturdays....yikes.

Hope everyone has a good week!

Hi Kristen - Wow! I am so glad that you were able to work out your work place issues through your CEO. He sounds like a keeper for sure. I haven't met you yet, so nice to meet you

So far I have not shared my Dx with anyone in my work place, and since I work very closely with the President of our company I am hoping that should the need arise that his response might be similar.

Good luck to you with the side effects of your shots calming down, I know it must be terrible to feel like you have the flu! I started Copaxone a couple of months ago and am happy to see the site reactions calm down!

JSSL

[journeyman]

KMCHANGE100

I was heartened at your boss' story with you and your position.

I had worked at this hospital for years. Left to teach RN's for five years. Decided to go back to the hospital as there had been many changes. In Florida they have the "Right to work or fire you law" if you are with in your first 90 days..

I had what they thought was a stroke. Was in the hospital for five days. Got dx.d. Went back to work and two days later I was fired.. So I was happy to hear your story.

Been on Rebif for three years. My Neuro advised on shot night to take 2 ibuprophen and one benedry. Never had that flu like junk once on his regimen. The ibuprophen takes care of the body aches and the benedryl help you to sleep until the storm is over. I only take them on shot night. If you use this regimen just know that the night you don't take the benedryl you will have vivid dreams.

They are both over the counter. Hope that helps. Check with your Neuro. A lot of people in here are on the same regimen. One note is that
Dave
J. Tampa, FL

[roo613]

Hey strangers!!

I hope everyone is doing well. I have been feeling pretty good lately. I have done a lot of spring cleaning, etc. I had one day where I didn't get out of bed, but other than that, I am living life!

The crazy part of feeling good is that it really makes me want to stop the Copaxone. I am having a greater internal debate as to whether or not it is really doing anything.

Well, it is 1 a.m., and I have to get up early....back to grading papers.

[JudySz]

Kirsten....glad the job thing is working out. I think I miss owrking the most of all the things I do not do anymore. Hang in there as long as you can. Glad you talked to the right person.

Roo.....missed you, glad things are going well.

Gomer, you know I love the Cherry Blossoms, enjoy.

Me, went to dentist yesterday.....tonight is Lenten series of talks at church. Invited dd over for dinner cause I forgot, then I had to call and uni9nvitte her. Good thing she understands this MS makes me nutty.

Boring week coming up, but weather is sunny today, and I took dogs for a long walk since I slept late and did not get them out on time.

Have a good week everyone.


Wish I could get motivated like Inmon to clean. House is so messy lately.

JudySz

[Surfrgrl]

Nothing new here!

Well, gee. Nothing much going on here this week. Just working like a crazy person and hanging out with the family. Thought I'd post something this week though since I pretty much dumped and disappeared a couple of weeks ago.

We're getting ready to plan our summer sailing trip which is always fun. I think we're going to head for the Grenadines this year.

Still feeling fabulous w/o DMD's or anything else other than the occasional Advil. Other than the residual numbness and tingling, I am having absolutely no symptoms. Not having to see a doctor every three months is an extra added bonus. I'm trying to avoid the medical establishment all together and, unless I come down with a nasty case of Ebola (or need my annual PCP exam), I don't see the need.

Happy Tuesday!

[100002249382735@facebook]

I've been reading posts here for a few months, and am glad to be joining in - I certainly don't feel so alone.

I'm frustrated with trying to balance learning all I can about my condition, but not to get obsessed and let it run my days with concern. It seems like such a rollercoaster with feeling fairly normal one day, and ringing ears and clumsy the next. My impaired vision is the worse and most dibilatating. I had no idea how crazy MS could be.

My MS neuro dr wants to get me started on treatments right away, but I'm nervous about how they will make me feel. She doesn't feel the daily painful joints are a part of MS and I almost hate to bring up all my issues, but some of them are relevant to her. Sigh - it's so confusing.

I have been having what is suspected as throat spasms where I feel like there's a lump in my throat at times, and like someone's squeezing my throat at other times - it's not been a fun feeling.

I don't complain to husband, as I don't want to wear him out with hearing it, so I appreciate your listening. I can't imagine others understanding the daily changes in symptoms and frustrations.

BUT . . . it is going to sunshine later in the week and my hubby makes me smile daily, so life could be much worse!

[journeyman]

Doc

I sent you an e-mail address of where we had lunch last year so you can get your GPS lined up. That way we can meet.

Where we will be eating has Lots of fresh sea food ( No petrolium on it from the oil spill.) They charge extra for that. Sits on the water overlooking the Yacht Club with out that kind of expense.

I'm really looking forward to it. I'll probably have lots to share as my Neuro appt is that AM.

Enjoy DC and your trip down.
Dave

[JudySz]

Welcome Linda

We will lways listen. I feel the same way about complaining to my family. They always listen and are very understanding, butthey worry alot.

Feeling lousy this week. This has to stop........I hate it....Just general yucks. Maybe later this week will be better.

Going to see a Beatles tribute band on Saturday. Dh bday present. Excited about that.

JudySz

[journeyman]

VA

I got a call this AM and was told that I was too wealthy and the best they could help me with was $ 2,000.oo per month.

Gomer threatened to drag me to the VA next week when he is down here. Guess he won't have to. I will call them today and see what it takes to get hooked up and into the system.
Dave
J.

[gomer]

Hi J-man.......

'Bout Time!

I am still going to bring Crystal with me, just in case. (btw Crystal is my invisable lethal weapon made of solid bullet-proof glass, aka my #1 cane)

For me without the VA my MS would be without any treatment options. I like having OPTIONS! $9/month for my Copaxone beats a couple grand in my book anyday.

Judy I hope you feel better by April Fools day, that an ORDER!

Roo..... if ya don't grace us with your persona, I am goina treat you like Jman, threaten ya with Crystal, my invisable cane.

NEWBIES...I am glad you found us, please feel free to ask any questions, and VENT as you feel the need, in short we HEAR YA! and WELCOME to MSworld and Rest Area 51. We have a lot of great people here that are or have been there, so we understand.

Gomer Dr. of, Been There, Done That

[jmel]

Fatigue or just plain tired and stressed out from work

I was diagnosed in late January of this year. And, my immediate boss was super supportive. He is a "cancer survivor" and just an all around great person. He has always been very supportive about my doctor's appointment etc.

he told me to let him know if I ever felt that work was interfering with my health.

Well, fast forward...He is on a well deserved vacation (2 weeks) and the work and stress has ramped up considerably. Well, actually it was ramping up before he left. But, I didn't want to start complaining about "being tired and stressed" right before he went on vacation. Beleive me..The man works harder than anyone.

But, it is hard for me to tease out just being tired and stressed out and the fatigue I have felt before in the past. Right now..I just need to hang in there. But, right now..I am just so mad and tired.

I will wait until he comes back from his vacation to chat about it. I am thankful to have a good job. But, I know it comes with long hours and a lot of stress...I guess this is just complaining. But, what am I am supposed to do...Call in to work "tired"? Especially, when I am one running things while he is out of town..

I know this is a rant..Sorry... I just need to deal with it until he comes back.

Later.

Jmel

[journeyman]

Good Saturday Morning from Gomer

Just talked to Gomer. He called from the Washington Monument. He has been wantering aroung taking Cherry Blossom pix.

He said he will arrive in Florida tomorow. He said he is just going to rest tomorrow. Then will take off for Tampa the next day.

He said to say Hi to everyone tomorrow.

I hope for you a restful weekend. I will keep posted on Doc Gomer.

God Speed to all of you.
Dave
J.