@ Rest Area 51 Paging ALL MS Newbies Aug 11 '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 .

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.

Being a newbie can be as scary and lonely as being in limbo, Remember we are you family away from family. 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 is having a good summer!

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

I am getting ready to make like a snow-bird
(wrong time of year naturally) and plan to lunch with Journeyman again while in the bay area.. It may be a couple weeks before I start a fresh Rest Area again due to limited web access

I had my regular MS clinic checkup this morning.
It was a bit longer than average., over 90 minutes. I forget (as usual) to ask an important question, is it safe for me to get the shingles vaccine? He is OK with my continuing Copaxone, but would prefer me on an interferon and respects my aversion to the interferon side effects.

He also asked me if I wanted to try the new miracle walking drug, w/50/50 chance it might help me. I said yes, that a lot more favorable odds than none, which it is w/o.

Yippee!..no more doctors for a few weeks, like mid Sept.

?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.

Gomer A hit-n the road w/Marshmallow & GoGo

[Knit]

rest stop

Have to say it's been an interesting few wks.

4-H fair - the kids did great! My fav -"hey mom did you see Sean? He did a perfect jump" from DS who is training his alpaca and a llama just after the obstacle course!

I ended up falling in the road during the rain while people were rushing out of the parking lot. What are they afraid their cars are gonna get wet? Got up quick and sat on the curb. I think after 4 days of heat and fair and I fell only once is damn good!

Now planning on bringing 3 suri alpacas to the farm, nurse my angora buck as he has a cast to his shoulder(broke his leg) and breeding season is upon us, and find a way to pay for a new med as my medical refuses to pay for it.

Been decent so far but I always wait for the other shoe...

Knit

[journeyman]

Hey Snowbird

I'm still in Texas. On Saturday we were supposed to break our longest string of over 100 degrees. But yesterday morning we got a sprinkle and overcast. Stayed around 95 - 98 degrees. So much for being here for the record. But I think I was here for the highest record. It really hasn't been that uncomfortable with this kind of heat. Tampa is unbearable with the humidity.

I will see my Neuro-Ophthamologist at the VA when I get back. Then in a month I will see my VA Neuro. They both say I am in remission and they won't need to see me again for a year unless I have a problem. I have open appt.s if I need them.

I know I am supposed to be happy but I spent three years learning how to cope with the sx of MS. and I feel guilty even expressing this but I am having to learn how to live normal again. Its harder than you think. I am having to figure out how to restructure my life again.

There is a health science teaching position open again but after listening to my wife about what is happening in the teaching field and administration I don't think I could handle it. I just don't know what to do except go on with my retirement and painting.

I took this vacation to take care of my daughter-in-law after her surgery and my two-year-old grandson to think things through.

I'll be back in Tampa Friday the 19th. I need prayer for my future. Thanks.

See you then Gomer.
Dave
J:

[journeyman]

KNIT

Hey Knit. I gather by your name you must spin and knit your Alpaca fur. While I was a medical missionary in Central and South America, (Guatemala). I bought two beautiful Alpaca blankets. I love then so much because you can use them year-round. They breathe. They keep you warm in the winter and are comfortable in the summer. I have had them for about fifteen years now. I have to guard them because our Beagle loves them too. They are beginning to show some wear. I bought one last year but somehow it seems different.

They are such beautiful animals. At the camp where we put up our hospital the women were doing "drop spinning." They offered to teach my wife. She was a mess. All the men lined up along the wall were talking to themselves. Our translator told us that they were saying, "What a poor wife. She can't even spin. That family won't even have any clothes. What kind of a wife is that." We thought it was hysterical. The women gave her the spindle and some Alpaca fur to "practice" with. She never learned but we have it in a wooden bowl on display in our house as a symbol of what a "poor" wife she is.

Thought you might find this enlightening and funny.
Dave
J:

[Knit]

Journeyman

lmao...still have the spindle? Hmmm your "poor"wife needs some good old sheep's wool! Alpaca is too soft and slippery for beginning spinners. Sheep's wool has some "grab" to it. It clings better.

wool that is "raw" or "in the grease" is even easier to learn w/. but I prefer cleaned wool: lanolin removed. Then the wife can try alpaca again.

Yes, alpaca wool is 30% lighter than wool and 30% warmer too! Just like wool the fiber is year-round friendly! It's awesome!

Yes I do knit..spin...weave...etc w/ my fiber! I have alpacas, llamas, sheep and angora goats (mohair) all that wonderful fiber on the hoof!

Just rereading your post does make me smile!

[journeyman]

Thanks KNIT / Other Thoughts

I have not even discussed this with my wife yet because I am still dealing with it in my head.

1. I have upper right eye blindness and ON.
2. I had three lesions by five MRIs and what they thought was a stroke.
3. Numbness and burning down my legs and in my feet.
4. Positive ? (eye/brain) test.
And so forth.

My request for restarting my Rebif was met with this comment, "Well we are really not sure you even had MS."
So for two years I was on Rebif injections and have no lesions now!

So what have I been doing for the past three years and multiple neurologists telling me I have MS. I know it is hard to dx but I know what I have been going through. But now I feel like a liar and a faker. His comment has just blown the bottom out of my, my...I don't even know what to call it. I will admit that I am confused and depressed. I just don't know what to think. This Neuro is considered the best in the county.

Confused and down.
Dave
J:

[BigA]

Dave,

Is it good news, or are you in some sort of limbo land? if it's good news, then I think you'll adjust. If it's not, you'll still adjust.

If you want a great, short read by the author of "Black Like Me", read "Scattered Shadows", by John Griffin. Many do not know, but before he was famous, he was injured by a bomb blast in the pacific in WW2. He eventually became blind and wheelchair bound. He kept a diary the whole time, typing blind. His faith and the way he dealt with his impending blindness and disability certainly puts me to shame and I think is a lesson for anyone, ill or not.

After finding a career, wife and having children, he suddenly began to see specks of light one day and made a full recovery. He writes about both journeys. It's an amazing story.

BigA

[journeyman]

Thanks BigA

Sounds like something I need to read. You mentioned something about "limbo." That's what I needed to hear. It is exactly what I went through going into this mess. I am experiencing "reverse - limbo." I just need to strengthin my resolve.

I read "Black Like Me" in college. Maybe I need to revisit it.
Thanks so much for responding to me and taking the time to offer the helpful comments. I am a Psych RN but it does not do any good when attempting to treat yourself. You just need a good outside view. I appreciate you doing that for me and giving me the perspective that I needed.
Dave
J:

[gomer]

Hi using tab on wifi, on road.

Va called need kidney check b 4 they can put in for pos rx? ????? For ampira.

Jman. Its HOT HOT HOT!!!!!!


C ya latr gatr'$

[oso49]

New at RA51

Hello, all. Very new to this. Diagnosis not yet complete; LP scheduled for Friday, the 19th. MRI showed 11 lesions and all other tests were negative for what was tested. Somehow that's "good" bad news. LMAO. Anyway, still working - can't afford to retire at this point. Praying I'm not "forced" to. The symptoms keep messing with my head....or is that the '60s haunting me...HA!! More later. Be well...

[journeyman]

GOMER

Its hot here in TX too. Yesterday it was 103 with 30% humidity. Having to use Chapstick. Turning into a raisin.

It has been as high as 108 and 20% hum. It's really not bad unless you are mowing a yard.

Tomorrow the humidity will zoom as I arrive back in Tampa.
My wife, who usually tolerates the heat better than I do says that it, "it totally unbearable this week." So I have that to look forward to.

Although I will miss my kids and grandson I am looking forward to getting home and staying in the a/c except for lunch with you.

Don't melt before I get there.
Dave

[gomer]

Jman...........

I said like a SNOW bird... not snowMAN...ha ha ha

Many a decade ago I was in Dallas.... 108!

Been getting a few little things done in short spurts.

Not sure but I expect I would BAKE before melting tho.

Hi everyone..I am a bit tired right now, will write moe when I get back from this road trip.

Gomer

[JudySz]

last,

Hey Dave, go sit in your a/c, have a cold beer and think about all the changes life brings....You will adjust to whatever is going on. You seem to have a positive attitude. For now, enjoy the remission or whatever......

I ahve been busy, fair last week, then clothes shopping with each grandkid separately. Been feeling okay, so I am enjoyihng it. Went to zoo last week. it was really fn. Made dh push me wheelchair and I did not wear myself out.

Have to stay in awhiole, spent too much on fair and kids school clothes, but it was worth it.

Day 1 of 3 day steroids, feelning a little loopy so time for a rest

Started Ampyra a few weeks ago. Love it, walking is so much better. Donot use cane as much and not as worried about needing w/c soon.

JudySz

[journeyman]

JudySZ

Thanks for the advice. On Fridays my wife and I sit in the pool and sip Sangria. Makes for a great evening. I will be getting in a little late tomorrow to partake. We are going to dinner at a restraunt on the way home from the airport. But this weekend is going to be one of rest.

Each night around 3 am. my two-year-old grandson climbs into bed with me. He then turns into a wild animal thrashing the rest of the night. So I have gotten little sleep. The I take care or him all day while my dau-in-law is healing up from spinal surgery. I forgot what a two-year-old can be like. I will need a sizable quantity of rest when I get home.

Next week I have to see the Neuro-ophthamologist then that will be the end of appts. for a while.

Interesting heat out here. Soothes my arthritis. You were right about it being hot. The humidity today was around 17% for me in Tampa tomorrow will be around 87%.

Thanks for the advice and will write next from Tampa after lunch with Gomer.
Dave
J:

[journeyman]

Home in Tampa

Now I am back in the heat and humidity. Its morning and 84 degrees and 83% Humidity.

Its good to be back home with my wife, Beagle and bed.
Dave
J: