SUMMER 2010

[Carolyn, Director]

Boy life can sure get in the way in keeping you up to date on the Gleins! Jerry is doing great after his little surgery, took a few days to get back to whatever is considered normal for him...you'd never realize he was 77 years old as he keeps quite active and of course is always out there walking Harry several times a day meeting people in the campground along with our own neighbors who own their own places here in the Rainbow End's complex. He knows everyone and recognizes many that we've met on the road from other states...me, I'm kind of a hermit as I have to watch the strong sunshine, way too sun-sensitive and certainly do not want to invite a flare up of lupus. I join Harry & Jerry on the mid-night, last walk til morning trip. And really those walks are the coolest ones of the day. I have to admit, up until this week it has not been overly humid here, even with the temps in the high 80's & 90's, but we've had rain this weekend and now the humidity is out there waiting to meet us even at 12:00AM.

I did pick out a a floppy straw hat I can wear in the late afternoons for a walk now & then, however my walks are not long ones...woe is me, I can remember walking 3 miles a day back in the early 90's when lupus was first given a sure fire diagnosis...would walk along the beach in Seaside, OR. Now I'm lucky to walk around a short block here in Texas at the tiny house. My hips start thumping me and I start wobbling. My hip X-ray came back OK a few weeks back so evidently there is little or no arthritis in the left hip......even with both of them still giving me probs. So in my infinite wisdom, I have decided it is coming from my back.

SOme of you might remember that I had my L4-L5 vertebrae stabilized about 6 or 7 years back and I have the titanium rod & pins holding it in place. They were sliding off each other at that time and I know that new bone growth has taken place there. I was told that I may want the rod, et al taken out some day...but honestly, I do NOT want another back surgery if I can help it. I had such a bad reaction to the anathesia, scary as it took 36+ hours to revive me....Jerry had a hard time during that period not knowing if I'd wake up or not. However the actually surgery went well. I am going to see a Chiropractor in the morning to see if SHE can help me out a bit. I've not been to one for 40 years or so...just not something or someone I've turned to for help. A couple of my friends here have been going to his Chiro each time they visit here and really think she's great...so we'll see how I feel. Maybe I could walk longer distances again. Doesn't have to be 3 miles, I'd settle for one easily. Sure would help with the weight.

Weight is a bad word as mine has crept up and has almost made it to 5 additional pounds...have to remind myself that's not the right direction to be taking to lose weight. It has been such a big battle...still have not lost the steroid weight from the 90's...ugh!

I've been making cards right and left, and Jerry seems to be using lots of them up...birthdays to our family and you members along with thank you's for your donations. Thank you Thank you. I now have signs going up to the attic that is not my studio....they say THE SALAMANDER STUDIO or...the lizard loft. I seem to catch at least one little salamander a week up there and have no idea how or where they are getting in? I googled them last week and found out that they can live from 5 to 30 years and some can get way big...lots of different critters in the family.

On the 30th, we have company visiting from Australia...only for an afternoon/evening...but it's been two years since we've seen them so we are waiting around for their visit. They want to have a look at the Tiny House... and I'll have it nice and clean and picked up for them. At least I hope too...will also be packing up the motorhome again for our next trip and if all goes as planned we will take off on the 1st or 2nd of July. Heading for Montana....was going to have an art class in Helena on the 25th, but got an email this weekend that she is cancelling out as there were not enough signed up for it. She travels all over the U.S. giving these classes and has to have 4 classes of 12 signed up to give them. Well I missed out on that one...maybe catch her elsewhere some other time.

Will catch you all up with us again soon..........we found a neat place last night with the help of a girlfriend (72) here in the park...it was about 50 miles down the road from us in Liberty, TX called the Liberty Opry and they put on a great Country Music Jamboree with mainly local Texas talent. And they were great...for $10 each we had a very enjoyable 3 hours plus dinner on the way there. Fun night out.

Hugs to you all and I sure hope you are able to enjoy life, regardless of your illness...no it isn't like it was before...I can't walk 3 miles, I can't be in the strong sunshine, I hurt, but I am enjoying life as I am still here and able to be on my feet each day. It's different, but I try to make it good....hope you will try too!

[GuidaL]

You are such an inspiration! I have Fibro and Chronic Fatigue. I am working, but retiring on 7/30. In the fall I want to restart a support group. We had one here in Augusta Maine for several years and it fizzled out. My big issue with starting again is the past facilitator will attend and she makes the group her crying board for all her ills and those of her husbands. I am hoping to have a more uplifting group than one that is dedicated to one person's pity party. She is a terrific person and I know how much she suffers so certainly don't want to hurt her in any way. I think this is why people stopped coming. It was the same story every month. My question is, how do I stop her from carrying on. Has anyone dealt with this?

[Carolyn, Director]

Yes, I think all leaders have dealt with that and probably will from time to time. While we feel sorry for that person, we can soon loose patience and get frustrated with them, and with ourselves for not being able to handle it. And handle it we must or the group will soon disintegrate as you found out. You have to set some ground rules especially when it's meetings without a planned speaker or program. You have to limit the time that each person speaks, you kindly say something like, "we all can understand what you're going thru, but we need to hear how Susie is coping now...or what problems our new members are dealing with"...or you just tell her we have 12 members here today and we need to see how they are doing. Some way you have to break in, interrupt her as kindly as possible but be FIRM and move on to another topic of discussion or to someone else who has a need to share. Humor works well too, have a joke or two you can insert or a funny story about your fibro fog (even if you make one up)...that will make a break in what she has been whining about and you can move on. If you get a group started be sure and let me know, as there is a LEADERS group online now and I'd be happy to see that you have an invite to it. There's a very good group of gals and even a couple of guys, some who have lead groups for years and all have good experience and are there to help each other out. And I'd always be happy to help you with ideas.

PS I lived in Caribou for a few years....

[Carolyn, Director]

OK guys & gals, I'm now seeing a chiropractor...first time in 40 years, and boy have they changed from that time. Since the doctor found that my hip pain is not arthritis I figured it must be my back and I do not want to have another surgery unless there is no other way...and I can get by with a certain amount of pain. Anyway we're working on my back area with machine type masage to settle down the nerves, and then Dr. Lee is a very nice young gal who is your super brainiac, goes to work on me with her other machines. Seldom do they do the crack, snap, & pop of years gone by. I have 5 app'ts so far and the hips are still a problem but we're working primarily from the top down, and my neck/shoulder FM pain is so much better...big improvement there. She also questioned if I might have a UTI or yeast infection...we ran a test, and sure enought UTI. Will see my regular doctor next week and in the meantime am taking 6 cranberry capsules a day on advice of Dr. Lee...it may be OK by the time the doctor can see me.

My printer decided to quit working since a part broke and it no longer can be replaced, it's done...of course knowing it was now a discontinued model, I had stocked up on ink cartridges...and they're no use to anyone...just $$ down the drain, unless I can find a way to use them in my art work. Off to get a new printer...more later.

[Carolyn, Director]

Printers are so nice today with touch screens and all to operate. Could do it wireless but the way I'm set up it would not be secure enough. Anyway we went to Houston and looked for printers at Sam's Club, Office Depote, Best Buy & Office Max. Ended up buying a Lexmark and chose Office Max as for $36 extra they gave us a special warranty that for the next 5 years, they will REPLACE it, and not just send it off for repairs. I don't like HP's because they turn the paper in a full circle inside and sometimes make it hard to do card stock; I liked the Cannon, don't like the Epson, didn't know much about the Brother (only familiar with their sewing machines). I've sent an email off to Lexmark to see if they'll give me anything for the ink cartridges I have on hand from the old machine.

It was very hot today...96 and humidity just as high, really wears a person out. Did two loads of laundry; Jerry took the motorhome out to get the hot water heater fixed, and then had it filled with propane; we put our hats on and I walked Miss Kitty while Jerry walked Harry. Miss Kitty & I came back home after about 10 minutes, while the guys went to visit a friend who just had triple bypass surgery last week. Left overs for dinner tonight from PaPas Seafood House where we ate last night in Houston. Starting to load the motorhome as we're at the 2 week count down for our next trip.

Pain Level at a 5 today...fibro & arthritis & uti

[Carolyn, Director]

OK it's a week until our company from AUstralia arrives and a day or two after that we will be hitting the road too. Am really looking forward to seeing Pat & Frank again, and they also have another couple traveling with them. I don't think they will travel with another couple again soon....it's one of those things like "you don't know anyone until you marry them or work with them!" Only in this case it's...or travel with them. Pam & Frank like to travel so much that now in their semi-retirement are traveling far abroad...in the past two years they have been in Ireland, Japan, and the U.S. 3 different times. Pam is from the Seattle area, and Frank is the Aussie...& she just put her father in a nursing home in Washington state a couple of months back. The couple with them have done little out of country traveling...while my friends do things such as lodging on the cheaper side, this couple wants top flight rooms, etc. My friends love to shop for bargains alone with items for their business, and new found things, this couple doesn't want to shop at all....

I can tell you there would be no one who would enjoy traveling with Jerry & I... we're lucky we found each other! We both enjoy staying up late, especially reading late into the night once we've gone to bed...and because of that we enjoy sleeping in late so that we get 8 hours +, regardless what time it is when we crawl out of bed. Jerry often gets up between 6:30 and 8:00 to walk Harry, and then he comes right back to bed. It works great for us, but how many of you would choose those same habits. We enjoy eating out several times a week, I can cook but no longer enjoy it, and regardless we just plain like going out especially in new places. We like to hit book stores, and movies, along with cheesy touristy places and of course if I can find a Hobby Lobby or Michaels or a neat Stamp and or Scrapbook Store..that's always a must. We hardly ever travel more than 200 miles a day once on the road...sometimes even less. I don't think very many would find our travel routines to their liking. We often take in museums (Jerry's favorites), a cave or two, even a silver mine once, and casinos too. If one of us isn't interested in something the other wants to see, then they just take along a book, newspaper, magazine to pass the time with.

OK GET OFF THAT SUBJECT carolyn! I had a chiroprcator app't today and Jerry went with me and met Dr. Lee. He asked a question about an old tree that was down behind the building so while she was working on me she told him about Hurricane Ike that went thru here around 18 most ago. The tree went thru her building and she wasn't able to check it out good until the 2nd day after the storm finally let up...the tree had gone thru her roof, the rain had soaked the rugs, walls falling down & roof caved in. What a mess and her building is on the edge of downton. Hurricanes leave areas with no water, no electricity, no phones, not even cell service in some areas and also leaves them with huge messes in 90+ heat. Not fun.

After we were done there, it was off to Dr. Hutchison our PCP. Dr. Lee had discovered that I was working on a urinary track infection...Dr. Hutchison agreed that I had way too many white cells and sent off the sample to grow a culture. Hopefully will know how bad it is in 2 or 3 days and then will prob start the antibiotics. Back in April when I rec'd my lab report, Dr. H had made a note that I should not use antiinflammatories...so I asked her what could I take when my arthritis flares, my bunion flares, etc? It turns out, I can use Tylenol and that's it. Dang, I'm not sure how that's going to work but guess I'll manage....will have to start using all the pain relievers I used when the lupus was active. Breathing exercises, self-hypnosis, reading, movies, art, anything to divert my attention. How do you handle pain? Sure wish you'd post or email me and give me some ideas.

Hey have a good week all....tomorrow is Thursday and I have a permanent in the works and dinner tomorrow night at a neat resturant called MY PLACE with the gals who do our yard work and another couple here in the park. Always a fun night.

[Carolyn, Director]

It's catch up time again...first off our friends from Australia made it and we had a great afternoon and evening visiting, having a good Italian dinner, and sampling some great wine. We found a few bottles of their favorite Australian wine which made them very happy. They are big wine connoisseurs and had not been able to find many good wines on their trip so far. We drove them all around our camping compound and gave them an idea how serious motor-homers live

We had done well getting everything put together at the tiny house, set the AC so it would accommodate the hot summer days to come...have to protect our book collection, and now also the paints and inks and papers in the Lizard Loft. We were able to take off the next morning around 9 which was really good for us. There is an Indian casino near us in Louisiana owned by the Coushatta Indians and we'd heard so much about it decided that would be our first stop. We did not hit any big jackpots but the casino was very generous in comping our campground and one dinner while we were there. Nice. Lovely place.

Houston had heavy rains about that time and was flooded with cars lined up on roads unable to get through so we decided to go further north and cross on interstate 20. That darn Texas is a long way across and we do not drive fast or far in a days time. We did a couple of days in Abilene and enjoyed a movie there & some shopping. Next we were in New Mexico heading north and had an engine problem, called our tow service (who in the past had been very good to us in similar situations) at 3 in the afternoon, again at 4, next 5 then asked for a supervisor...we finally got a nice tow truck driver who arrived around 11PM, he called a guy he knew and got him to open his shop for us at midnight and he even hooked up our electricity for us...so we had our AC!! It was a Friday so we had to sit there until Monday. Well what a good thing that turned out to be as we were towed in to Santa Fe and what a lovely city that is. We found the old town area all buildings in the Mexican pueblo motif lots of fun...found a Zuni Fetish shop, so naturally had to ad to our collection.

Colorado Springs was the next place we spent some time in. Made a lovely drive thru the Mountain of the Gods and stopped in their Trading post...we ended up with matching T-shirts and a big 4 foot lizard to hang on the stairwell wall of the Lizard Loft. Jerry surprised me with that one. It is so cute and painted nicely in bright colors. Saw two movies there....the Sorcerer's Apprentice and Inception. Nick Cage was great as the Sorcerer and it was a fun movie, but Inception is one of those movies that you have to pay attention to from the second it starts and it can hold you spellbound for 2 and a half hours. We loved it....all about dreaming. Interesting.

Now you are almost caught up with the trip...last night we spent in a rest area on the edge of Cheyene Wyoming. We haven't gotten mail for over 2 weeks now...I miss my mail. So we picked a small town with one zip code to have our mail sent to and Wheatland, WY was the pick. Today we drove to Wheatland...an easy Sunday drive, only 76 miles and such a pretty day...warm 90 mostly with some wind. Wheatland is small so we decided to find the post office this afternoon so we'd know where we were going and if there would be room to park the motorhome towing the truck. Next we had to find a place to spend the night and VOILA!! We came across a sign that said City Park this way with camping...free camping and better yet free with electric hook ups. We checked it out and it is so super...big old trees, about 12 spots for RV and several for tents. Here we sit and can see a basketball pickup game going on, a tennis match and a shepard chasing his frisbee. Soccor field nearby along with a swimming pool, and a walking path. Quiet, lovely, small town. They have a place you can leave donations and we'll do that for sure...think we'll spend a couple of nights. They have a nice Safeway Store where we picked up a few things...miss having Safeway in Texas near us...they have things that other grocery stores don't carry. Had dinner in a little diner...swiss steak was the special, a bit tough but the price was $6 so whose complaining.

So how are we? Jerry had a Shingles vaccination...they aren't cheap and our insurance did not cover it, but it's something he's been wanting to get. He's had shingles in the past and he figures $200 was a cheap price to pay to not have them again. I passed it up due to an infection I'm fighting...a dang boil in a bad area...inner thigh up high. I can't see it but I sure can feel it and Jer has to help me bandage it....then of course the water seal type bandaids did agree with my skin and I developed a raw place from it. Using Boil Ease and antibiotic soap to clean it good, along with hot packs. It seems a bit smaller but has not come to a head, at least not as painful now. If it doesn't clear up in a day or two I'll have it checked out while in Montana.

Harry had a bath last night so thinks he's pretty cute today...he enjoys getting cleaned up. And so do I when he comes to our bed....he usually sleeps on a blankie on the floor by the bed, but if he goes out early in the morning, Jerry brings him back to bed with us. Miss Kitty has been in a very affectionate mood the last 24 hours, sleeping alongside my back, sitting on my lap, kneading me and purring....hmmm wonder what's up with her. Molly .... she justs sleeps and sleeps and sleeps and waits for her breakfast...they get canned cat food in the morning and dry the rest of the day. Molly lives for that breakfast and meows from the time my feet hit the floor in the morning until I fix their plates. Then she's happy and is ready for a nap,

That's it for now........how are you all doing. C'mon get in touch let me know how your summer is treating you.

[JuliaRN]

what a summer you are having! I love to read your posts, so vivid.. I feel like I'm there with you.
Give Jer and the critters a pat for me.. so glad for the critter update!!!

[Carolyn, Director]

August 5th...........the time in Montana went very quickly and kind of a mixed up time. We spent a few days in Billings to catch up with laundry, hair cut for Harry, and getting some mail ready to go. From there we headed up to northeastern Montana to check one the farm...I've mentioned before, but Jerry's dad homesteaded there in 1906 and over the years was able to buy up a thousand acres. No one has lived on the homestead in years as the famer who takes care of the land lives several miles away, and his son is our Godson. We are in the process of selling the land to them at this time. They are like family to us....our Montana family. The electricity hasn't been turned on for five years, and it's a bit expensive to have it on for a week or so and then turned back off, so we decided instead to camp in the small city campgrounds nearby. First it was Medicine Lake...that's the town that Jerry granduated highschool from, and there is not much happening there...a city swimming pool for the kids, and two bar & grills for the adults with a couple of churches and a gas station. Grocery stores have closed down in many of small farm towns. We drove about 30 miles to a pizza place the first night there and on the way home we ran into some very stiff winds which we later found out was the edge of a tornado. It bounced our truck all over the road and by the time we got back to the motorhome it was raining very hard.

It was the first time a tornado touched down in Montana since 1945 (1943?) and it destroyed a farmstead -- 2 homes, many barns and out buildings, heavy farm eqipment, fencing, 20+ cows & calves, 2 people died and one to the hospital. If you have nothing to do, google Montana tornado and you can see some great pictures.....so sad. Anyway I could not get computer service in Medicine Lake and also had probs with my phone. Jerry's worked fine but my would call out, but could not get incoming calls at all. After 3 days there we moved further north to the county seat called Plentywood...there all cell services worked great.

Jerry game down with a bad case of Sciatica...terrible pain going down his right leg, so he found a chiropractor to help him out a bit....he got some relief but it's not been permanent. He's walking with a cane and guess who gets up early to walk Harry? and in the middle of the day, and late night too. Hopefully after a couple more chiro app'ts he will start feeling better.

We have now moved on to Minot, ND. Jerry's family is slowly coming to an end....his 2 cousins live here and one just celebrated his 90th birthday...he still drives but has retired off the farm. The other cuz is 2 years younger than Jerry and still does some farming.These Glein guys are a sturdy lot....and the wives are neat too. We'll be here a few more days and then moving eastward...the weather has been beautiful here. It's still light out...almost 9PM and has dropped to 68 degrees......was 80 this afternoon but a lovely breeze all day.

Hope you all are staying cool and watching the heat. I know some of you are really roasting across country, try to stay out of the sun and do keep hydrated. I have found two flavors of Gateraid that I can tolerate...fruit punch and grape, so am making at least two of my glassfuls Gateraid these days. I came close a couple of times to having a "heat" attack.

Hugs......

[Carolyn, Director]

Up in the middle northern states you could believe that summer was nearing it's end with the much cooler temps we've been experiencing. First stop after North Dakota was the Bloomington, MN area which houses the MALL OF AMERICA in the St Paul/Minneapolis neighborhood. I would think most of you gals have at least heard of the Mall of America, and I'd like to know how many have shopped there. Jerry brought me here back in the early 90's after a trip to the farm in Montana...needless to say the lupus & fibro were active at the time, I was so overwhelmed with the noise & the people that I just did not enjoy it at all. And we did not stay long either. This time was so different...first Jerry had his sciatica working on him so after wandering around a bit, checking out the various stores, elevators, & escalators he ended up on the ground floor primarily at Barnes & Noble. One day he found the Regis salon a couple of doors down & splurged with a haircut, but he enjoyed perusing the magazines & books @ B & N while sitting down. I shopped, what more can I say. I checked out the Sketcher Shoe Store, QVC Store, even the $ Tree . I did drop a few $$ at CJ Banks for some new tops, and my main purchase was a NOOK. Sometime go to Nook.com and check it out...it's Barnes & Nobles Ebook where you down load books to it, and/or you can also download magazines and newspapers too for your reading enjoyment. It is 3G and wifi ready so it's ready to do your bidding at anytime you can get a signal. It's going to be great for us....we buy hardcover books that are first editions and signed by the author for our collection, but there are other books we
want to read too that we usually get in paperback, now instead of PB's we'll just download the books. Anyway I had a great time at the MOA and so did Jerry too.

From Minnesota we headed into Wisconsin looking for cheese, the famous Wisconsin cheeses. We were almost across the state before we found a Cheese Haus, and then we had to drive several miles out of way to get to it. It was well worth it as not only did they have numerous cheeses, but also sausages & various meats, along with tons of home made fudge. We bought as much as our refrigerator would hold and enjoyed munching on cheese curds as we drove on to Michigan. Michigan has been beautiful and we've driven up to Sault Ste. Marie to the locks and then followed Lake Michigan down and around. Jerry says we're stopping at all the Indian casinos in Michigan...there are 14 of them... a new Las Vegas? Not really they just have lots of Inidans up here...the Chippewa, Ottowa, Objibwe and more. The casinos almost always have good parking for us, some even with nice campgrounds and most are generous in their discounts.

Jerry does his exercises every morning, takes his meds and is coping the best he can...no pain when he sits or lays, just when he stands on that right leg. Me? Well me has a not so nice problem she's been dealing with....boils. 68 and never had a boil before and so far have had six, down to three right now and hoping this is the end of them, but-t-t-t I have no confidence in that either. Wish me luck....