Rest Area 51 Calling ALL in early yrs of MS Dx July 5 2010

[gomer]

Welcome to Rest Area 51... a special haven 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.

(See NOTE below, Sorry a day late)

Pull into a nice shady parking spot and enjoy the 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.

We have a deep dark SNAKE PIT for us to throw doctors or anyone else deserving of a good bite. We have a VENTbox for anyone to use anytime, we ALL need to vent once in a while.

How was YOUR Week?.............. Did you have any doctor apts or tests this past week?

What does YOUR week ahead look like?..........

NOTE: Sorry I am a day late with a fresh Rest Area 51 thread. I was having Trouble getting on. Seems the login boxes for username and password got exploded past a vast see of blank white.

My past week was a little hectic with needing a new tire for my car and prep for the holliday. Did over do a bit, but otherwise a good week. I sold a few old parts of my camera collection so I could get a new up-to-date notebook. My new 3D Acer came last Thurs and trying to get thing to work on it...loads of fun trying to load things.......ugg.

So far I have my camera & photo software working, my multi-track audio (some fo it) loaded and working. Still can not use it for the web nor can I print my photos with it. I did down load my scanner driver (worked) and downloaded the latest Windows-7 specific drivers for my Canon photo printer. NOT working.

Yep I C 3 D......yippie! Its got a 15.6inch TriDef 3D LCD w/LED backlight display. It even reads my 3D format photos and videos right off the SD card from my 3D camera in glorious stereo 3D. One great aspect is NO shutter glasses! I can use the same cheap 3D glasses theatres use and I also use for my Zalman monitor. Heck even the cheapo circular polarized paper glasses work great.

I went by a friends house Sat and showed off my latest gadget. He was the one who sold me my first kodak stereo camera decades ago. He is semi-retired, still does camera shows once in a while. He was very impressed, I shot a stereo 3D video of his back yard and popped the card into the notebook and played it back in 3D right there on the patio.

My Week ahead....... extra rest is on my agenda. NO docs or labs this week........

Sorry I could not post a 4th of July greetings. Hope you all had a GREAT 4th.

GOMER (tired, will add a QotW later, any suggestions?)

[fuzzywuzzy2]

Hey Gomer!

Besides being hot and tired...im doing ok.

Doc appt. this Friday, nothing special though.

Should know by end of month where I stand with my job, I will keep evryone posted.

No need to apologize! Hope you have fun with your gadgets.

I too, had prob. signing on...freaked me out!!

As for me Im off to work tomorrrow..tuesday... and I just want to sleep!

I have an apple comp.(laptop) would like a new apple..but....

Have a great week! Get some rest!

[gomer]

What da ya say Fuzzy-wuzzy........

Gettin practice at findin the links to get on here.....yuck!

PRINTING.yea! Found the correct driver! Found there are TWO very different versions of Windows-7 home ed. The one on my new acer is home premium and ONLY the 64 bit driver works. I did not know, nor did I see an option for two different drivers on the canon site, just the one.

My (now) old notebook is real OLD. back when xp was NEW new new......It's so old it has a floppy drive! The only way I could get a new notebook was to sell off some of my shutter treasure. Not something I want to form a habbit of tho.

I have an Apple, a iTouch, great for passing time waiting in lines or at Dr apts. Enjoy your catnap bear.

I think the Rest Area may be a bit quiet this week, many people are having problems getting on or finding the links. Everything was working fine July 3, then came the 4th and I guess the fireworks musta scatter'd the programming.

GOMER

[roo613]

Glad to know I'm not the only one who couldn't find the login boxes!! The home page for me looks CRAZY!!! Which is how I strongly suspect 3D would look for me Gomer! I just hate having to wear glasses....

Not much going on for me this week. I am meeting with my department head to go over the classes I will be teaching this fall. I had intended to meet with him back in May--then the hospital stay happened, etc. Sooooo hey mid-July is better than never!

I go to Vanderbilt next Tuesday. I'm not anticipating too much excitement, but we'll see.

On a positive note, I have not flared yet....and my pattern has been such that i have flared the first week of every month! So yay!

On a negative note, I HATE Rebif. HATE HATE HATE HATE HATE it! It hurts (we've tried both the autoinjector and manually). And it is one thing to psych myself up to do it once a week, but 3 times just stinks! I cried tonight for the first time since I have been diagnosed.

And I sold a bunch of my scrapbooking stuff on Ebay, and I made $1300!!! My goal was around $700, so I did way better than I thought I would. So at least giving up a hobby has been worth it financially!

[elmo2010]

the home page is completly messed up for me too!

I had a great extra long weekend at the trailler finally getting some time to relax! Although right now the heat is killing me!

My Rebif arrived today, & the nurse is coming tomorrow to teach me how to use the rebismart. i am not looking forward to it.

Roo - I hope it gets better for you - has anyone said why it is causing you so much pain?

[JudySz]

Well I missed all of you the last couple of days. Son in law had computer cause I had too many viruses on it and crashed it. So glad I am back on line. Hope everyone had a nice 4th. Ours was quiet.

Last week of business for me. Dd's last week on maternity leave, so I am loosing my lunch buddies again....We have some lunches planned this week with her friends, and I have a general doc appt. then I am babysitting tuesday night for new grandbaby. I am so excited. Then on Friday, I have the other 2 grandkids, and his birthday (9 yrs. old) Friday night.

The heat here in OH is killing me......But I am still on my steroid taper, so I am feeling pretty good.

Hang in there everyone.

JudySz

[BigA]

Glad to know I'm not the only one who couldn't find the login boxes!! The home page for me looks CRAZY!!! Which is how I strongly suspect 3D would look for me Gomer! I just hate having to wear glasses....

Not much going on for me this week. I am meeting with my department head to go over the classes I will be teaching this fall. I had intended to meet with him back in May--then the hospital stay happened, etc. Sooooo hey mid-July is better than never!

I go to Vanderbilt next Tuesday. I'm not anticipating too much excitement, but we'll see.

On a positive note, I have not flared yet....and my pattern has been such that i have flared the first week of every month! So yay!

On a negative note, I HATE Rebif. HATE HATE HATE HATE HATE it! It hurts (we've tried both the autoinjector and manually). And it is one thing to psych myself up to do it once a week, but 3 times just stinks! I cried tonight for the first time since I have been diagnosed.

And I sold a bunch of my scrapbooking stuff on Ebay, and I made $1300!!! My goal was around $700, so I did way better than I thought I would. So at least giving up a hobby has been worth it financially!

I was waiting to hear how your rebiff was. I'm sorry to hear that it hurts, but if it's stopped your relapses, then that's good news.

I've had even more moments recently when I forgot I had... you know....

[journeyman]

Calling Roo613-Rebiffer.

This a rather long entry but is composed to make Rebif and other injections less painful. They are not high tech medical but just some common tips.

Sorry you're having trouble with the Rebif. I have been on it almost a year and a half - three times a week. Being an RN and doing a lot of experimentation on myself maybe I can share some of my tips.

* the more fatty tissue you shoot into the less the pain. ( If you are skinny and shooting into the muscle you are more likely to hit a muscle which has a lot of vessels ane they have a lot of nerves. That where the pain comes from. )

* shoot slowly. I inject a small amount and wait a few seconds then ease the rest in. The body hates foreign substances. The first little bit helps it to adjust and ready the nerves.

*ease the fluid in slowly and smoothly.

*ice on the site for a about thirty seconds will knock out the nerves and "kinda" numb the injection site.

*if you are on the skinny side (I'm not)you might try aiming the needle at SLIGHT tilt off of 90 degrees. (some people have only a shallow fat pad and injecting here will divert it away from some of the nervous tissue around the vessels.

*heat on the site will help its absorption and decrease the length of pain.

I rarely have a problem or pain. The only time I have pain is if I hit a vessel. When going straight in every now and then there is a "snapping or popping" as it enters a vessel.
If this happens I know I am in for a "burner or stinger."
The only thing that helps when this happens is to put the alcohol pad on the site and massage the muscle near the site.

I hope I haven't made anyone lose thier meal. My wife would have already passed out just reading this.

I hope this helps take the stink out of your Rebif. I truely have had no problem with this. I just applied the shot techniques I learned in Nursing school 25 years of experience.

Best to you Roo613. And everybody who has to inject.
J.

[gomer]

QotW

Afta noon Crew..........

Roo..........sorry 2 hear your rebif issue, hope Journeyman's tips help. I have worn glasses since I was 18 for my MS related diplopia. (only took nearly half a century for an eye doc to question WHY I got diplopia in the first place). I hope the Copaxone works for me.

a Human PinCushion is me..... with 5 insulin shots a day..what one more jab?

Journeyman..... Thanks for sharing your tips with Roo.

BigA.......????? "you know"? sorry BigA, I don't recall, did not get what you mean. Hope ya had a great 4th and nice to see you hear.

JudySz......aren't grandkids GRAND? we get to love'me, spoil'me and send them home with mom and dad.


elmo2010............. Good luck with your rebif. To me that age 13 bit I was getting, some others as well, Takes me back a spell, like first hospitalized for this stuff.

QotW...Question of the Week?
(sorry a bit late with this weeks QotW etc)

A- Do you know what YOUR normal body temp runs?

B- IF you know, what is YOUR normal body temp?

GOMER, ME, myself and I.......all me run from 97.0 to 97.6 as MY normal body temp. For me a 98.6 is a FEVER! My FamDoc apt before last was a bit shocked by my 97.0........he not only mentioned it but had a wierd expression on his face. I had to assure him it was NORMAL for me.

A PLUS?......Yes, for me a low body temp is good, lower body temps mean my nerves conduct better. I attribute that as a mitigating factor for my MS.

DownSide....... That also means when I am running what would normally be considered a mil fever, is double NOT MILD for me. First because I normally run a lower than average body temp, second with the MS that just adds to to ill effect.

THINKING....Questining out loud. I wonder if a lower than agerage body temp a way nature tries to counter MS? It's long been known that electricity conducts better at lower temps, in the body or man made devices.

I hope y'all respond as well a possable, some of you may know and some may not know what their normal body temp runs....this might be interesting. Maybe some that do not yet know what their normal body temp runs may want to track it over a few months or more.

GOMER I THINK I just blew a fuse by THINKing?

[ollieopps]

Question of the week

hmmm, that's a good question and one I've never thought of and am not sure what's normal for me. I think I'll check it out...but then again it would require getting a thermometer

I'm in week two of mega steroids, first infusions, now 30 days of a taper dose. When I'm done with this I'm truly done with steroids. I'm not sure I see a big gain for what I've just been through and the side effects have been irksome, such as sleeplessness and very moody with emotional highs and lows...just ask the DH.

Thought about diet, exercise, drugs, past lifestyle, current lifestyle and future lifestyle. Am hopeful that a change in diet will be most helpful, at least it gives me more immediate control over what I am doing for me.

I think I'm just starting to think about MS and the implications. I think when first diagnosed I was in overdrive to get something started, to improve my health, and all that goes with it. I see it's a bit more complicated or involved, and maybe I'm finally grieving for having this disease - when that's done I can move forward, yes?

Tuesdays I do my avonex shot - I've had some ups and downs with the shots, but overall they have been pretty smooth. The DH did it last week for the first time and it was nice to give myself a break from doing it - was surprised that it was a totally different feeling for me when someone else gave it to me. That was a first - I've done all the rest of them.

[BigA]

Gomer,

ha ha. Let me explain. I'm only now first having moments - and they're just moments where I forget... that I have...

(ms).

the first was out with the family in the car. We were talking and laughing and it was the first time I could not remember an "MS process" running in the background, sucking up 1/2 of my brain.

I've been having more and more moments of life again.

[gomer]

All I can say BigA.......is we ALL or at least most of us have MOMENTS.........lol.

I just ahd to respond, first to your reply and to MOVE this thread up so it shows up before last weeks thread..

GOMER a Bumping

[kudos]

Montel on Oprah

Not sure if anyone wants to watch this but here it is:

(Part 1) http://www.youtube.com/watch?v=rgS4H-hTo0Q (http://www.youtube.com/watch?v=rgS4H-hTo0Q)

(Part 2) http://www.youtube.com/watch?v=vhvs9MeSB6w (http://www.youtube.com/watch?v=vhvs9MeSB6w)

(Part 3) http://www.youtube.com/watch?v=XeVLHghw5ec (http://www.youtube.com/watch?v=XeVLHghw5ec)

(Part 4) http://www.youtube.com/watch?v=MI19CDlAlfE (http://www.youtube.com/watch?v=MI19CDlAlfE)

I like Montel and find how he's dealt with things inspirational in terms of dealing with life. The point where Montel tears up he said later was from his pain flaring up not what Oprah said. You can see it on his face right before. The part w/ Dr. Oz seemed kinda lame to me though and alot of people have said the part about the MS hug is inaccurate.

Hope everyone's week goes well, mine is so far. I'll be glad to be off steroids soon

This week for me.

Waiting on the insurance or drug company to approve or order or whatever the Copaxone.

Continuing the PT, think it is helping and dealing with the rash I always get when I am on steroids for a long time.

(Will try to get in with the dermatologist soon to get the right meds to treat it. Has not been this bad in years...ugh)!

Feeling better hoping I keep improving.

Stay well

[JadeVictoria]

Hi everyone,
I really enjoy reading your posts every week. My week has been crazy. We bought a house in San Diego this week. We will be moving from Utah around the 15th of August. I have lived in Utah my whole life. If anyone lives in the San Diego area and wouldn't mind answering some questions for me it would be really great, please let me know.

I went to my first Copaxone luncheon last week. The neuro they had speaking said MS is just as managable now as diabetis (sorry if that's misspelled my brain has shorted out) or high blood pressure. I'm not sure I agree with that. Hope everyone has a great week. Jade