Rest Area 51 Paging ALL MS Newbies Sept 19 2010

[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. If you just came from MiniVanMama's Limbo Island, you should feel at home here now that you have your MS Dx.

NEW Newbies corner feature this week for new newbies. We the people (with MS) here are REAL, no mistake about that, but our features here at Rest Area 51 are virtual. We are not perfect, we are human and some have cog-fog and or neuro issues that cause us to make more typos or spelling errors than most, so we UNDERSTAND, because we share a common thread called Multiple Sclerosis and also deal with it every day.

While our shady parking spots , cool stream, community room and snake pit etc are not physically real, any more than we have a real Soap box, you CAN REALLY come here to post and vent, your venting WILL be read by many, and some may respond! While no one is here 24/7, we come and go from day to day, remember someone WILL at least read and see your post. You are NOT alone!

Our Snake Pit is a virtual place where you can vent and share your bad experiences about calous docs, nurses or even insurance reps. Venting is something we ALL need to do from time to time. It helps us deal with tough bumps in or road of life, and we have it tougher than most people. Just keep in mind, no matter how hard we may have a day or week etc, there is always someone who has life even harder than we do.

We have some here not only MS newbies, but also new to using a web forum like this. MS world and Rest Area 51 is a safe place (even if only virtual) where you can come, post a vent, ask questions, by all means feel free to ask ost ANYthing. There are no dumb stupid questions here, which is as it should be. AS you come and vist us from day to day, you will become more comfortable here at Rest Area 51 and MSworld.

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

The only dumb stupid question is the one NOT asked.

How was your week? Good I hope.
............Any Dr. apts etc?

What does this week have in store for you?
...........Any Dr. apts etc.


Wobbler, I sure hope things get easier and better for you, hang in there.

Doc Gomer hey, I remembered to flag this week spost with the green circle/arrow

[Shandi]

No doctors this past week, and I don't think anything will happen this week.

Yesterday, we had FedEx knock on our door with a mystery package. It was the Copaxone Autoject. This instantly turned the DH's content mood into a bad one. I have to start taking Actemra for my RA and he is upset about potential side effects, and now he has his reality coming at him.

Still waiting on the benefit information from Shared Solutions. They said I should know by Tuesday. Fingers crossed!

[glenmoor_guard]

Rest Area 51 Paging ALL MS Newbies Sept 19 2010

Tough week. Another one coming.

I missed out on fitness workouts last week due to an increased workload at work & at home. My energy levels are down and my fatigue is up - at less extroversion and less intensity. Strange consequence of taking it easy, huh?

I have cytoxan treatment scheduled for this coming Friday - 4th in a sequence. Follow-up appt with neuro next week. I hope to get to the fitness center a couple of times - that should help.

I'm leaning toward not continuing the Cytoxan treatments due to a lack of return on investment. I don't feel any better since I started it.

Best wishes to all those who stop by the rest stop.

[elmo2010]

Hi All!

the past week has been ok, no appointments, but the tingling in my hands & thigs is driving me nuts!!

This week could be a tough one. We have a fundraising 5km walk/run this sunday of which i'm the organizer. so the stress of getting 82 people ready for this event is climbing.

Then there is the one great fear....that i won't be able to do the walk myself! generally I can walk just fine,(short distances) however my ankles tend to give out on occassion, and the numbness in my legs obviously gets worse when i get over heated. So I am keeping my fingers crossed taht Sunday will be a good day for me.

I know sweating can be a Rebif reacation, but is it ongoing, or just following an injection? for no apparent reason, i can be doing nothing and i break out sweating and once i start it takes me awhile to cool down again. Even on non-injection days. Anyone else experience this? any suggestions to deal with it?

I hope everyone has a great week!

[JudySz]

Where is everyone this week?

I have nothing coming up except a ahir appt. (yeah)..

Surprise party for dd was great on Sat. Lots of work and I could not have done without the help of my other dd and one of kids friends.

Hit me yestereday and I was on the couch all day, but today is better. Normal for me, never as good as I used to be, but at least I can get off courch today.

Hope everyone has a good week.

JudySz

[roo613]

Nothing going on for me this week, except that I feel sooooo good!! It is amazing how you get used to a new "normal" when you are on a DMD. And while I thought i felt good on Rebif (til things went wrong), I had forgotten what good really feels like! I am going to have a hard time starting meds again.

On Saturday, We braved the trip to Knoxville to watch the Vols get beat by Florida, but I managed to walk for forever, sit through the game (we had awesome tickets that were in the shade), and walk back to the car. And I was still good to go on Sunday!

I hope everyone has a great week!

[BigA]

I'm feeling slightly crappy this week and it's not the weather. I guess our symptoms can wax and wane.

Roo, where are you? What's going on with your liver and injections, or was it the end of the month that you'll find out?

[journeyman]

Cane thing Doc !!!!

After a week of using my cane. I went to the drug store today. When I got there I realized that I left my cane at home. I thought, "No big deal."

When I got back to the car my good leg was exhausted from supporting my bad leg. I have realized the value of the cane.

A friend of mine told me she has five of them scattered all over the house and an extra one in the car. Now I understand.
J.

[BigA]

Nothing going on for me this week, except that I feel sooooo good!! It is amazing how you get used to a new "normal" when you are on a DMD. And while I thought i felt good on Rebif (til things went wrong), I had forgotten what good really feels like! I am going to have a hard time starting meds again.

On Saturday, We braved the trip to Knoxville to watch the Vols get beat by Florida, but I managed to walk for forever, sit through the game (we had awesome tickets that were in the shade), and walk back to the car. And I was still good to go on Sunday!

I hope everyone has a great week!

Melody,

Seriously - you sound like the sales guy at Copaxone. "You can't imagine how great you will feel".

Sound like you had a great day. I hope you continue to feel great.

[journeyman]

Ok Doc and friends. Incinerating!!! Need Help.

Is there a vendor or catalog where you can order MS stuff like the cooling jacket or other aids that you have found useful.

Don't think I can take another summer in Florida without some help.

I read that Rebif increases your sensitivity to heat and sweating. I know we have had a super hot summer and I have complained all through it. Wife says, "Its always this hot." If that is true then my Rebif was just about to incinerate me. HELP!!!!! J.

[gomer]

Ok Jman ........

What ROLE do ya want the Doc in 2day?

Mean ole Doc GROUCH:

-1- First you picked your poison, oops I mean DMD, now live or fry with it.

-2- Jman, ya got MS, what did ye expect to feel like when ya live in a steam bath to begin with?

Doc Softie:

-1- Here is a tissue, feel free to shed eye-aqua all you want, I am here, my should is super size and always here when ya jez wanna let it all out.

-2- I'm sure there is a program that will pay for a walk-in cooler, maybe kleenex will sned you a decade suply of them for free, maybe even provide an inflateable shoulder for your convience, all ya gott a do is ask, jsut be sure to shed some fake tears so your cheeks are wet with sweat at the time.

Doc Gomer;

-1- Now Jman, remember I WAS down there in Aug, by far the HOTTEST month in al Florida, Ok it rained and was more like a Fla winter temp wise till the day, or day before I left the sauna sand bar, oops penensula.

-2- Avoid that a'natural solar vit-D delivery system in warm weather as much as practical. Go outside and garden or whatever for 5 minutes, then take a 55 minute cooling break, then repeat as many times as you like.

-3- Maybe you should take up moonlight gardening. It's a bit cooler, even in Tampa Bake when the solar-D machine is napping.

-4- Get a remote starter for your wheels, the the air will be blowing COLD by the time you waddle your way to it, especialy if you leave your cane at home. Hint Keep your fuel tank FULL....lol Use a windshielf solar screen, about a measley $3-$4 and USE IT!

-5- Buy stock in TECO, then reward yourself with 60 deg indoor temps 24/7. ALL TECO stock holders will your move. WARNING ya might have to rob a Barnett Bank branch, if ya can find one (Ha Ha Ha & I ain't gonna tell ya who bought them out), to PAY your geo-orbiting monthly TECO bill. As a consolation, remember TECO elec rates are CHEAPER than Lakeland.

-6- I have a Polar (max?) cooling vest. It WORKS! Came with 2 sets of gel-packs, tan in collor (as fashionable as a suicide bomber looking jacket can) and is adjustable. It does come in several sizes. COST, what cost? My VA MS doc Rx'd mine so my vest came courtesy the VA, heck they even paid shipping and handling. maybe if ya ask GOOGLE, they might give you some leads on where to get one.

-7- Dress LIGHT, you might try some middle eastern garm, white light and layerd. I wear fishing shirts mostly. They are VENTilated for cooler wearing. maybe wearing a Fig Leaf suit might be even cooler! Rmember ya always ahve that cool suit you were born with.....lol

-8- QUIT shopping or going outsdie between 10am and 6pm, If ya have to venture out in the Tampa Bake, make your mad dashes into cool stores etc shoart and quick.

Doc Gomer Tripple Trouble, always tripple!

[journeyman]

Thanks!!!

Good thing you answered so soon. I was thinking of joining a nudist colony. I understand that they have a nudist beach in Sarasota. Think I'll try the cooling jacket first. I've picked up some unattractive weight around the mid section. Not quite the body I would like to show off.

Maybe we could go into business together and make "fashonable" cooling vests.

About three weeks ago someone on this list said they hand painted one. Maybe we could hire her.

Thanks for the suggestions.
J.

[gomer]

4get what I posted.........Go for the nudeist beach, far better scenery, not to mention interesting.

I could, if I were so inclined, haul out my Singer.

IF, that's a biggie and I am not inclined, (nor reclined either) I would make it so it would use gel-packs my Copaxone comes in. I get about 3 of them every month. I also get free foam collers in fitted carboard box.... Wonder if I could sell those collers.........

Oh, How is that moonlight garden comming?

Doc Gomer

[ollieopps]

just when you thought

I posted last week about how good I felt...well, just when you think it's safe to think of yourself as 'normal' MS strikes to remind you that life as we knew it isn't quite the same. I had two thunderbolt strikes to the head - takes my breath away, doesn't last more than a few seconds, but honestly feels like a mini-explosion in my head. I am left with such a residual headache, or head that doesn't feel quite normal, for sure. On top of that thought I had the avonex all figured out and have had two weeks of bad avonex evening/days, complete with chills, horrible headaches, body aches - spilling over to the next day. I know that it will pass, but geez louise, just when I thought I had this figured out, wham.

All else is well. It's a great time of year, work is very busy, which I like, lots of fun projects at the house that take much time and energy, but the end result will be great.

And the holidays loom right around the corner! Hope all is well with all of you.

[BigA]

Me too. I was feeling quite normal for months, each symptom getting better. Suddenly, I'm back in April. Is it an exacerbation? Who TF knows. Certainly not my doctor. In any case, I can still do everything I normally do, it just feels crappier.

What does it all mean? Nothing, probably.