Sunday, January 29th, 2012 | Author: steph

We’ve been in the southern area of California now for a week and until this morning when we got a bit of rain it has been beautiful. We have had sun and warmth enough to get out and play. We have been biking a bit with the dogs; got to wear off Cleo’s winter fat. Better yet got to get me used to riding my bike again! We have been walking with the dogs every day. We need to wear them out so if we leave them they don’t get into trouble! No more scavenging off the table.

We have the same campsite we had last 2 years. I like it here. Rich and Rosanna are just a short distance from us. We’re far enough from them we don’t hear their generator. Ahh the sun is now coming out, perhaps our rain for the day is gone! I was wrong about the rain. We are an island in a sea of desert muck. Not as bad as before when our camp sat lower-the skys opened up yesterday and let loose. I guess the desert needed it. Ooh it should help the wildflowers in Death Valley. It’s approaching that time for rain to bring them out. I would love to see them at their best this year.

Well that post above was written in Dec. and it is now the end of Jan and we have come and gone from  Quartzsite, AZ. In fact we just arrived in Tucson,AZ about an hour ago. I don’t have nearly the setup Jerry does and he’s tired from the all day drive. We are staying on BLM land outside the city so we can stay 2 weeks here and move onto Safford, AZ. We are both excited to look at a Polaris dealer here for a Razr quad. We have already decided to do it so we’ll order the trailer in a month or so and pick it up on the way home. We are going to see about buying one here and having it shipped to Lake Havasu where the trailer is. Then we could go on home intead of crisscrossing AZ in search of one.

We are thusly going to curb our spending here. We always enjoy the really artistic display and I had thought about buying another fossil but I’d rather look for them myself in Utah. We thought about going home via Utah again but that would mean crisscrossing Arizona with the trailer and Razr. We don’t even know yet if we are going to have to order one. That and getting my thyroid adjusted are our two priorities for now. Rocks and gems will come after blood work and a visit to Tucson’s wonderful VA center. We’ll see what an experience I have there!!

Monday, November 14th, 2011 | Author: steph

Wow a lot has been happening since I last sat here to run my mouth off. Jerry and I have joined a group of political activists right here in little old Prineville called the Human Dignity Advocates. We decided to have our own Occupy Prineville movement on the 15th of Oct. to show our solidarity with Occupy Wall St. We made our own signs and occupied the sidewalk in front of the beautiful old Courthouse here in town. We spent a good 2.5hrs out on the sidewalk getting honked at, yelled at, given the finger, and spoken with on the walk. Just as we were leaving I got involved in a conversation with a nice older couple who proceeded to ask me why, if I didn’t like the political climate, didn’t I run for office instead of standing out here like a “vagrant” . I I took great offense at the idea I was a vagrant after explaining to the woman I had worked over 25 yrs as a nurse. I didn’t feel I was wealthy enough to run for office and I didn’t feel I wanted to be bought by special interest groups to participate in our current political system-the only way to get elected these days! Jerry later wrote a very nice letter to the Central Oregonian explaining why we were doing what we did and the nice lady who accosted me posted her version of our conversation. All this came about after we had met with the HDA group who had invited us to their potluck politic meetings after seeing us on facebook and TV. One of our rock hound friends commented on a photo we had taken that day and we were invited to join this progressive political group. Since then we have held another protest with about 25 members in support of Move your Money day on Nov 1. We have become somewhat of a local phenomenon as the HDA people have gotten quite fired up to invest in such protests with us-it’s a cooperative effort. Unfortunately we are leaving in 2 days for the south so our participation in shop locally and boycott Black Friday will have to be on our own while we travel. We are travelling with our Occupy signs and our Guy Fawkes masks and will do our best to help convince people to continue moving money from big banks as well as to shop locally for Christmas-not just one Saturday! We will not be supporting China much longer I hope. We have moved a considerable amount of money out of Wells Fargo and back into NFCU, refinanced our mortgage with NFCU and will be removing more money as soon as possible. Thousands of new credit union members have done this so I hope we hit the big banks right where they feel it-in the cash box.

We are almost ready for the road again. A bit more packing to do and we are off. The pool is all closed down for winter and the yard is as put to bed as it will get. I do have some bulbs to put in today as I am growing a whole row of flowers in the garden this year so I can have some cutting flowers. I am tired of letting the bunnies get my lilies and pretties. The rest of the front yard will wait till spring for when the ground is a bit more moist and we can get a chance to buff it up a bit. It got packed down so much by workers its like concrete to dig up right now. I planted a whole row of poppies that I hope will come up this spring and should be gorgeous if they sprout. I have more seeds in reserve!

My body is adjusting to my loss of thyroid with nastiness. I can really tell the difference. My levels are whacked but they want to wait another couple of months to see how I adjust without altering my dose and I have gained about 5 # since then. My clothes still fit thank God but I don’t like the sluggishness I feel. Fatigue from MS is one thing but I just feel lethargic at times for no reason-that’s the thyroid shit. Somewhere along the road in Dec I will be having the levels rechecked. I am also now on every other day of Copaxone since my body has decided to be stingy with injection sites. I readjusted the syringe a lot to accommodate my lack of subq. tissue and I really like not having to give it nightly. I do have to keep better track of it though now that it’s not daily. Calendar everywhere we go so I know what I am doing!

Next post will probably be from Livermore, Ca sometime around Thanksgiving when we will be visiting with Morpheus, Shannon and Tim and Sandy. We are looking forward to our visits and hope the weather isn’t as cool as last year so we can spend more time.

Wednesday, October 19th, 2011 | Author: steph

“The times they are a changin”…comes to mind as I sit to blather about what is going on in the world and in our neck of the woods. Occupy Wall St., a movement in NYC to protest large corporations involvement in the governments role, as well as the state of the economy, unemployment, health and welfare issues, & discrepancies in the banking industry has reached its second month. The 15th of this month of October that movement was spilled over into hundreds of cities world wide. Our own rural areas had an Occupy Bend and Jerry and I were the two lone Prinevillians that participated in a protest in front of the Court House. We made our own signs and stood our ground for about 3 hours-all our poor backs would take. We had a fellow take our picture and posted it to facebook so our friends could see that we were in solidarity with others over these injustices. Little did we know that this photo would be seen by people on local news. A rock friends of ours saw the photo a day later and invited us to attend a progressive party group that has formed here in Prineville, so we did. We were pleased to be amongst people who felt as we did; they were also interested in supporting the Occupy movement as well as Move Your Money Day in Nov. This is a movement for people to move money from the five major banks that have either been bailed out by the government or bought out other banks that defaulted. They are the 5 biggest banks in the country and we are members of one-Wells Fargo. We are planning on moving most of our financial accounts,  and have already moved some money to the Navy Federal Credit Union. We have cancelled our line of credit with Wells Fargo and refinanced our house through NFCU for a lower interest rate than Wells. We would love to use a local community bank or credit union but NFCU is a non profit financial institution that distributes its profits amongst its members who are all Veterans. They work with those of us who are service connected disabled vets and the rates and services are just to hard to ignore. At our Dignity Association meeting we have decided to march on Prineville to get this word out on the 1st. of Nov. I have decided to wear my black pinstripe suit to illustrate my reasons. During our Occupy protests we wore jeans and nice T-shirts; we didn’t look or act indignant or anarchistic. We saw 4 representatives from our local and state police forces go by us without any interaction other than waves. We had people call us socialists, hurl profanities at us and I was actually accused of being a vagrant. “If I felt so strongly about this than why didn’t I run for office instead of standing here like a vagrant” was the comment. I was taken aback by that as well as the woman”s question about what does the “I am the 99%” mean on my sign-only she referred to it as 99th. Not wanting to argue, I explained to her what the 99% meant and that I was not a vagrant but a retired nurse and veteran. Yes I would love to run for office but can’t due to health issues and I don’t have the money it takes and I am not willing to be bought off to be elected. That caused this woman to shut her mouth and give me a rather befuddled look like “maybe she is smarter than I thought?”. Every thumbs down was greeted with a thumbs up by us. Every horn honking and thumbs up were greeted with another thumbs up and wave by us. We felt like we were back in the 60′s -only for me it was a new experience. I did protest the Vietnam War in the 60′s but wasn’t as able to be involved in the true activist movement for woman’s rights as I wanted due to my involvment in my education. It was interesting to have a rather young man show up at our meeting-he was in his late 20′s and was a locally raised young man. I asked him how could we reach those of his age to get them more involved and he said facebook. I laughed but he is so right. We use that social network to get our word out and our opinions expressed so every person we know, knows where we are coming from. We each hope to recruit one more person for our group so the word will keep spreading throughout our small town. This is the time in our country where people are hurting and in need of information on how they can heal those wounds inflicted by the hands of the big banks, or lost their jobs and have no health insurance or are living paycheck to paycheck on social security that is at this moment on the defecit reduction chopping block.

It was amazing and is still amazing to me how involved cities throughout the globe have gotten involved in this movement. It has spread to Alaska, Italy, Greece,Spain, England, Brussels and oh so many cities. The media has downplayed the number of cities on purpose. I do believe that this has put the government-I know it has put the replutocrats on notice. They are scared by the numbers of people who are telling their own personal stories of what it means to be in that 99% of the world who isn’t wealthy. When 1% of this country controls the other 99% through being wealthy there is something wrong with the system.

One of the most poignant moments in NYC’s protests was a speech by an ex marine who served tours in Irag and Afghanistan. He was speaking to a number of NYC police officers some of whom have been seen macing and physically assaulting non violent women-yes women! He commented that while in Irag his unit was accosted but responded in peaceful, non violent manners. His point was to express to the NYPD that there is no honor in beating down non violent people in our own country when it is expected of our fighting troops to treat those who are threatening us with kindness and respect. These police officers were dumbfounded by this rather large black man. He had their rapt attention and the looks on their faces said a thousand words. They were humiliated by this man who had a a chest full of medals on his uniform (he was retired but wore his combat uniform on purpose), and did not respond verbally. It wasn’t necessary. The people listening to this young black man were entranced by his words and he has emerged as a hero in some eyes for speaking such honest words. “There is no honor in this”….we need to treat each other better in this country.

To me this is the tip of the iceberg. There is such an underlying current of anger and disparity in our world right now that needs, wants, and will get expressed. I hope most of it can be done non-violently but it has turned violent in some cities such as Rome. Many in the US have been arrested in cities such as San Francisco and Chicago but they have been non violent protesters. What does that say to the rest of us who want to protest? We must be vigilant to stay focused on our message and not turn to violence to be heard because we won’t be heard that way, and yes even if we do protest non violently we may risk getting arrested-we are willing to get arrested. Thus the reason for my suit on Nov. 1. I am protesting big money involvement so I will dress like a banker and show people I can represent myself professionally despite my “radical”, in some eyes, thoughts.

I want this movement to spread everywhere in the world, especially countries that are in need of food, healthy water, and clothing for their children as well as educational improvements. We shall rise in these cities and be heard if nothing else. We will get our message out there and let our politicians know their jobs are not necessarily guaranteed for another term unless they too make some changes in the way they interact with each other and we the people who elected them. We must be held accountable as well for we elected these men and women to represent us in Congress. Congress is not representing the 99%; they are the 1% and that is part of the problem.

Wednesday, October 12th, 2011 | Author: steph

I am doing well after my recent bout with a partial thyroidectomy except  I have developed some dizziness I can’t quite figure out. I just searched through some MS info and found vertigo can be a sx of MS and maybe that is it. I tried to swim today with my wet suit on in 70degree water and when I stopped it felt like the bottom of the pool was coming towards me and the room would just not stop spinning. I actually had to hold on to keep from falling over in the water. I don’t know if it was because I am not tolerating cold lately or just another bothersome MS thing. I did read an interesting article on MS hug which I sure do remember having early on in the course of this wonderful disease. I remember seeing my internist then and telling him about the “band around my back” and he would go “sure crazy lady”. He sent me to orthopedists and would give me meds to take; the whole while shaking his head in the belief that I was certifiable. Really made me feel like a nutball at times. After reading the article I can now realize I was having sx of MS then. That was several years before I got my final diagnosis. I knew something was off! I was right! I am so glad I have an NP who specializes in MS and understands the sx. She knows about the periodic vertigo and feels it is related to MS. It’s just learning to deal with the sx. and being careful not to greet the floor when it happens.

I can tell my body is trying to adjust to loosing part of my thyroid. It is so subtle at times and other times just down right uncomfortable. I can get too warm quite easily then quickly get too cold. Sort of like menopause but I am on low dose estrogen so don’t think its that. I’ll be getting TSH, T3 and T4 done today so we’ll see where I am. I would like to get through this next year without any new problems or issues with my body. I have had enough thank you very much!

Saturday, September 24th, 2011 | Author: steph

I am home after having a partial thyroidectomy and tumor removal. Sore as shit but alive. I just heard yesterday (3 days post op) that it wasn’t follicular cancer like they thought but Hashimotos Thyroiditis. I have just been reading about having two auto immune diseases at one time and it is not uncommon for MS patients to have this develop especially if they have been on drugs for MS. I am not on an immune suppressant drug but a modulator so I am not sure how that influences my thyroid. I will find out when I have my MS appointment on the 6th of Oct. I see the ENT doctors again on the 5th of Oct. so that is rather convenient. They are sending the results to my endocrinologist who was the one who told me I had follicular cancer of my thyroid and boy am I glad he was wrong! I don’t know what the implications for my MS are having both auto immune diseases but I expect it will just be to monitor and change my thyroid dose levels and to check my auto immunity levels for my thyroid. Time will tell. I know Max will be quite relieved as am I and especially Jerry.

So many of my friends have been so supportive and so happy at the news that it is not the evil big/little “C”. It really scared us all way too much! I feel so blessed by my life. I feel as though I have cheated the odds so many times and really thought this time I was gonna come out on the loosing side but as I write this the tears of joy are rolling down my cheeks. I feel as though I have been given a second chance on life. I was so worried we put in this beautiful pool and I was not going to get to enjoy it or the wonderful home and life that Jerry and I have made together! Now if I could jump for joy I most certainly would. Not quite ready for that yet!

OMG when we went to Portland to visit with Mirabai and Paul and grand daughter Annalise we had so much fun with them. We got to see their new house and it will be so nice for them to have a fenced yard to play in. She has got such a huge vocabulary and is making sentences now. We left and she kept saying Pa Pa and Nana-that’s what she calls us. She’ll point at me and say Nana. I never thought it would be so heavenly having a grand baby in my life especially a grand daughter. It is so different than a boy. I can’t wait to do things with her. I want so much for her to get to know us here at home also. I hope when her parents get moved that they will invest in a babysitter and get her used to being with others than her folks so she can come visit us here during the summers. I would love to let her learn to swim in the pool here where it is safe and warm. We want to introduce her to country life also. Their new home is only a block from the school she will go to and close to a really nice park with a huge community center. Paul has agreed to not use one bedroom in the house for a studio but to put it in the garage. We will have a nice driveway to park Rocky in so when we come to stay we will be off the street. I will help Mirabai with her yard and get her some of my out of control Iris. They have enough room for raised beds so they can grow veggies. Neither one is really a yard person so they are lucky the front yards are maintained by the HOA fees. I am so glad for them as I know what it is like having a young baby in an apartment especially an upstairs one. Max was only 3 monthes old when we bought our first house. I knew I could not raise him in an apartment even though ours had a little side yard; it was on a busy street and noisy and just not condusive for a baby.

I wish everyone who is waiting for the results of a potential cancer biopsy could have the same great news I have received. Truly blessed am I!

Tuesday, September 13th, 2011 | Author: steph

My appointment with the ENT surgeon went ok…he was trying so hard to be positive which is cool but also politically correct by calling my tumor a neoplasm instead of cancer. He and Dr Cohen advised having half of my thyroid removed with the tumor and resecting the tumor more so they can really get a good look at the cells on the border of it. They did an indirect laryngoscopy to see my vocal chords which like the rest of me, are aging but don’t see any problems with intubating me. The tumor results will take at least a week and maybe longer if they have to send it elsewhere to be evaluated so I will still have this thing over my head after the 20th of Sept. when it comes out. The good news is I can do it under day surgery if nothing goes wrong with their resection. They have to be careful of the parathyroid glands while they are operating and if they have problems I will have to stay longer than a day. We are planning on spending the night after the surgery anyway just in case. So we go back to Portland on the 19th and have the procedure on the 20th. I just keep holding my breath that it is confined and not spread elsewhere by now.

The pool is all done now and is gorgeous. The tile and walls turned out so good and the fan box got trimmed in today by Marshall and Cye. They did a really good job on the entire room and we are very happy for their diligent work.

Having this pool has been a big boon to my health and I would advise anyone with MS to consider doing the same if they can afford it. It is a way to exercise and for me to actually swim in place hooked with a tether. It is also an excellent way to get cool when it is hot as it has been here for the past several weeks. We have had days of 94-95 degree weather and the house has gotten so hot that just getting in the pool and floating around has been an excellent way to get cooled down. The temperature of the pool stays about 82-84 right now. I did invest in a spring weight wet suit for when we can’t get the temp up to the 82degree mark. Being able to wear the suit will keep me able to swim when it is in the 70′s! It’s so much better than suffering in the heat or wearing a very heavy cooling vest. I have noticed I don’t have the same ability to withstand working in the 90+ weather anymore so anything that needs work outside gets done in the morning.

new swim in place pool Aug 2011

The tile and cedar paneling were done by Jerry with my help a bit. He did a fantastic job and saved us a bundle of money! And it looks amazingly great with some of our own collected 3×3 tiles added for personality!

Ok now for my scary story in the garden. A couple of weeks ago I was picking dead broccoli leaves and just casually walking through the garden to dump them over the fence onto our burn pile and right under my feet were two good sized rattlers mating. I nearly stepped on their conjoined tails and screamed for Jerry. We had workers and the housekeeper here so a lot of people came to see what I was hollering about. My heart just about jumped out of my chest as I visualized stepping on those guys and them recoiling back to bite both my ankles. Jerry got one first easily chopping off his head with a garden pick-we buried it as the venom stays in the head. The other one decided to play amongst the plants and it took several minutes to get it. They both had several buttons on them and I decided maybe to skin them so I set them out on the back picnic table on a tray to think about it for awhile. The next day I skinned them-very stinky job-and let the hides dry. I then researched how to preserve the hides so they wouldn;t be so brittle. I had errands to do so I found the glycerin and denatured alcohol which you mix 1:1 and slather on the hides. I did 3-4 coats of that in the garage out of the sun and the hides are now soft and supple for sewing or using however I want. The odor is gone and I feel like I actually accomplished something by learning how to do this. I would never be able to eat one unless I was starving as they stink very badly when gutted. The female was ripe for bearing those babies as she was full of a lot more fat than the male who was considerably larger and the hides are quite different in color. The male is lighter in color but has a larger pattern. I think part of that might be the females size though.

closeup of the hides; the top is the female, the bottom is the male.

The female (top) was much smaller than the male!

These babies will be made into a leather cuff bracelet and perhaps a hatband…not quite sure what to do with the big guy but he’s big enough for a band. The female would make a great cuff bracelet sewed onto some nice soft supple brown leather. Just have to get the leather. Hope to not find anymore of these guys in the garden for the rest of the heat spell we have been having! At least we stopped the creation of babies which I don’t  like doing normally but with snakes that bite dogs, yes we will kill again if we have to. That’s life up here in the rocky desert!

Wednesday, August 31st, 2011 | Author: steph

Well today is the day we go to Portland to visit with Mirabai and Paul and then finally see the ENT surgeon tomorrow. The last couple of days have been agony for me. I am tortured by the waiting game. I don’t like being a member of the cancer club! I want to be a member of the survivor’s club! I am sure I will but the endless days of waiting for an appt. are awful for anyone, let alone someone with knowledge of what could turn out to be something bad or good. I know it’s already bad news but I have the chance to make it turn out so good if it will just get removed in a respectable, reasonable period of time. I swear if I have to wait another couple of weeks I will pitch a royal fit. There is no reason my surgery can’t be scheduled for right after labor day. I can come back home and prepare myself for what is to come. I told Jerry last night I was very worried and he understands how serious this could be. He is so stoic and quiet about it. I asked him to please go to the exam with me so I have his support for the news. He’s a bit squeamish but is always there for me.

At least we’ll see Annalise who will soon be living in her own new home. Mirabai and Paul are up for a nice cute little home with enough room for her to have her very own space! Yeah no more dining room bedroom for her. I think its so important for kids to have some kind of space as they grow. It will allow her to perhaps, get out of their bed and into the beautiful crib they have for her that makes into a nice double bed as she grows. The house has a pink room but I sure can’t see her surrounded by pink! Mirabai felt the same way.

It’s starting to get cool at night now. I am scared of the forecast for 34deg. weather tonight in Prineville so I spent part of yesterday covering my ripening tomatoes. We checked the corn and its gonna be another year without it. For some reason the kernels aren’t forming. It looks like they didn’t get pollinated yet we had plenty of bees. I hope my mj does ok because it is gonna be some good stuff. It has the best white hairs on the buds and the entire tops are nothing but buds. I did cover the one weird tall straight one in the corn row because it is nothing but bud. The cool nights don’t affect the THC content but can affect the budding process. I have been using orchid food for them and that has really helped.

OMG while I was in the garden I looked up at our neighbor’s yard and low and behold there is a 70ft single wide mobile home sitting there now. I do hope he is done collecting things. This is a beast that needs painting, new roof and lots of work. Tom is a good worker but it is right in our face and if we ever wanted a view from the back it is gone. It sits further south of the patio thank God so when we have company we can still have some privacy. When you are in the garden it is really in your face. He will really need to do some landscaping to make it look habitable and better. I just got the willies when I saw it. He now has 2 small trailers, 2 small storage sheds, 3 trucks, a large hauler, tractor, four wheeler, and now this behemoth thing he will call a home. I do hope he gets rid of one of the small trailers. I don’t know why he moved it in except his living trailer is really quite small but he spent the time to add a front space onto it with a stove. He can’t begin to get the mobile home ready for winter at this date so it will sit out all winter. If he paints it some nice desert color it will help blend in. I am sure Vi and Mel don’t like looking down on it. Plus he has to power it somehow which means using his super military generator all the time in order to run the thing. He will also need to rethink using propane for fuel as diesel he is burning will be a bit much when its cold. I don’t know what he is gonna do about water?? He hauls it from the PLA water well which a lot of people do as they don’t have wells like we do. Oh well we’ll try and keep an open mind and see what happens. I just hope we haven’t gotten a hoarder for a new neighbor!

Next time I sit down to write I do hope I have some kind of medical plan before me…

Monday, August 29th, 2011 | Author: steph

I am up at nearly 6am after waking unable to return to sleep again. Here I sit still waiting for my consult with my ENT surgeon. I just hate waiting to know what is gonna be done to my throat. I have noticed some more trouble swallowing especially bread/toast/crackers. I also have a tender spot on the left side of my thyroid area also but can’t feel a lump there. When I push on the area though it makes me cough! It could be nothing but boy the ?? that go through your little noggin about what if…are just to many to deal with at times. I do hope I don’t have to wait 2 weeks from my appt. for surgery. I am seeing the doc right before Labor Day weekend so I know that will affect things moving along but I expect they won’t wait too long to get this thing out of me. I read yesterday that the type of tumor/cancer I have can be more progressively spread than other kinds at my age so please let’s just get it out so my lungs, bones, liver and kidneys can remain unscathed.

I’ll try to return to sleep after doing these posts and wearing myself out a bit. I have been getting so thirsty at night I get up and work a bit while drinking juice and can usually return to sleep then.

Monday, August 29th, 2011 | Author: steph

When Jerry and I get an idea in our heads like we did last year about this time it is nice to see it come to fruition and turn out ideal. Last summer we/I wondered how we could add a room onto the house, relatively in-expensively that could be a sun/swim pool room. We’re not talking lap length here, just a small swim in place pool that wouldn’t require $50,000 of expenses. We talked and saw Mark and Gigi Copeland’s pool and got very envious. Of course we knew a 50ft tall, full length lap pool would be out of the question for us, but it started us thinking. If we knocked out the front room window, moved the wall and door, put in french doors and added on a 16×16 foot addition we could probably do it. Jerry, being the ever resourceful man that he is, sketched up a plan, we met with an architect and a contractor to see where we were price wise, and met with the bank to see if we had enough equity to afford what we had designed. That all began last August and by November we had an equity loan lined up, an excellent contractor who could do it the following May and our concept suddenly became a reality.

May of this year we broke ground on a room that has become a haven for me and a labor of love and pain for Jerry. Marshall our contractor is great; his crew tore out our space and up went a plastic wall. Jerry started a photo journal of the entire project and it has been fascinating seeing it all come together. I have done my part by helping in every way I can by choosing color of cedar, tile, paint for house, taping, filling and sanding nail holes, painting, cleaning newly grouted tile, more cleaning of windows and doors that hadn’t been cleaned in years. We are now the proud owners of a gorgeous in ground 8×10 swim in place pool that I have used almost daily now for over 3 weeks. The weather has been so cooperative this year. It has been hot and the solar hot water panels have done their job so well that the temperature of the pool stays at a fairly constant 83-84 degrees. It was over 93 the other day and that pool felt so good just to noodle around in. We call it noodling when we  just float with our long brightly colored styrofoam noodles to keep you afloat. I have a swim tether that attaches to my waist and away I swim-to nowhere except fitness. I also invested in foam water aerobic dumb bells that are a real killer workout. Thinking of when it will get cooler and the pool temp might be 75 or lower (when we have no sun like in early spring when it snows), I invested in a spring weight short sleeved, short legged 2mm wetsuit that came and will be perfect-except for getting it on. It is quite the job getting it on and it is plenty big enough. Unfortunately right now it is awful snug feeling/smothering in fact to my sore neck. After the surgery to remove my thyroid and tumor it will be much more comfy.

This is taken so you can see the french doors that replaced an old wall and window

The above picture shows how we turned the door so it opens to the north and added an entry way that is about 5×16 ft long, then added a 16×16 foot long addition with a vaulted ceiling onto that. The tile is a desert colored variant with light and dark browns, reds and sand colors. We used clear cedar for the walls with a clear finish that will repel water. There is a super water vapor and wall board behind that cedar. The room can build up some good humidity so all 3 sides have 2 sets of slider windows that open and there is an industrial sized fan in the upper front gable to suck the moisture and heat out of the house. We have used that fan a lot recently since the house has been heating up so warmly in the evenings. Before we get ready for bed we turn it on and close the house windows,door and open the french doors and all the heat, clear back to the master bedroom in back is sucked out. It is literally like an air conditioner. It has saved my life heat wise several times. The blue and red hanging belt in the center of the door wall is the swim tether. It is mounted up at about 5ft to allow us to stay in the center of the pool while swimming. We have an extra belt ordered for Jerry so we can keep from constant alteration of waist size even though it is easy to do. It will be nice for him to have his own. We are, for all purposes done with this project. We have a bit of trim to add to one window, the fan box to be covered with screen, and some touch up painting to do and it is done. We have a new hardwood entry floor thanks to Jerry’s determination to match our existing floor. We have our doggie door back so the dogs can come and go and they love being able to use it again. I spent yesterday cleaning doors, jams, dog door, and windows that had become filthy from sitting and splatterred with dirt. All the tile tools are returned to barn so we can look at the yard and plan where to put back some plants we had removed and saved in buckets and planters. We have a lot of landscaping to do which means moving large rocks and creating a big front flower bed. I am afraid that will be thought about over the winter and actually brought to play next spring. I will plant the plants we removed and the bulbs I saved this fall before we leave for the winter depending on how my energy level is after my surgery. I can’t wait to add some purple sage and new deer resistant plants/flowers to the front space. The house looks brand new with its pretty sage green/dk green doors and pale green porch trim. The addition was done so perfectly that it looks like it was built with the house which is exactly what Marshall, our contractor expected and demanded. He is a marvelous guy to work with and we have managed to pay for all our work without dipping into our equity account. When we realized we really wanted to do this we saved $$ like crazy last winter and came home with enough to start without the loan money. The pool we still owe Brad some money on but we can use our Bof A card for that and get lots of good Hawaiian miles! Speaking of Brad from the pool place in Prineville, he has been great and loves the look of the room and the color of pool we chose. He has a guy who takes pictures for him and wants to get some pics of the finished project for his pool book at his business. This is the first pool like this that he has done and he is rather impressed at how we made it work and look so nice. Jerry is tired and sore and absolutely loves his new room even though it has been knee and back breaking at times. I give him so much credit for having the vision to see what I wanted it to look like and the fortitude to follow through with the intense work it took to get here. He is an awesome finish carpenter, he can tile and do woodwork and figure out the neatest ideas. He did a wonderful touching thing around the pool…he placed 3×3 tiles interspersed with the other tiles of rock we have collected on our trips and it just gives it a nice personal touch! We have window tile so plants like orchids can live in the room. Eventually when we stay for the winter we can have some tropical type plants. Next year I will have space for seed sprouts, prior to going to the greenhouse,  instead of using the dining room table.

I’ll add another image of the completed project with an outside shot. I thought I had one saved but I have to retake the outside photo since it came out blurry and I want one looking out at our new view. By the way we actually improved our view by opening up the living room entry and moving the door. We can see gorgeous views of the Mountains to the west and we have had some awesome sunsets. It is a perfect room to practice yoga in also as there is plenty of room along the sides of the pool. So very glad we decided to follow through with this plan!

looking towrd the house from the south side

In this shot you can see the Windy, the solar panels and part of the rotating rack, the hot water solar panels for the pool room and of course the new sage green paint. It looks like our own new little house with a super duper fun room. You will not see power poles!

Tuesday, August 23rd, 2011 | Author: steph

Oh my I just woke from a really bad dream and just couldn’t go back to sleep. I hate having dreams that involve people chasing me with knives or sharp things and being in the dark. In my dreams I am not able to use my voice to cry for help and wander in the dark with strange people chasing me or trying to hurt me. Wicked nightmares are no fun. Maybe it was the delicious Walla Walla Quiche I made for dinner! The onions got to me.

Jerry and I have been swimming in our wonderful pool for over a week now. It is simply marvelous. I feel so grateful to him for taking so much time to make the interior of the space so beautiful. We did well picking out tile and he has done such a great job at the tile pattern. He has been working nonstop on getting it done and is almost there. Only a few more window Sile’s to go then the window trim and it is done. When it is done I’ll post  a picture for the full effect. The tether system works really well. It is work swimming against the resistance of the band and I can’t last more than 20minutes right now. I have tried every stroke and it works very well. I  love swimming in a salt water pool and it has been so warm the temp is around 82-84 so its perfect. Rich & Rosanna saw pix of it and are coming to see us next year! Suddenly we have people who want to come see us.

I had the scare of my life this morning while going out into our garden to dump the compost bucket. I had stopped to pick some older broccoli Florette’s off the bush and was walking through the very bushy garden with head phones on listening to music when I looked down. I couldn’t believe what I saw. Two rather good sized rattle snakes fornicating-twisting and coiling right under my thong-ed feet. I almost stepped on them. I did pull the buds out of my ears immediately to listen for rattles and sure enough they were shaking. I screamed for Jerry and he actually heard me. He came out with a 2 pronged hoe and was able to get them apart and get one’s head off with a hoe. He had to hunt through rather bushy plants to find the other one but did get it and buried both heads to keep the venom from going anywhere. I now have 2 large snakes on my back deck table and am trying to get the guts up to skin them for the hides. I did get the rattlers already. We are starting a collection. Boy did it get my heart racing and from now on I will really pay attention. The drip system had been on for a short time and I think they were finding a cool moist place for their copulating. I have never seen snakes do that and neither had Jerry. Our housekeeper was here and watched as well as our contractor. I was in that garden in the heat watering yesterday for a long time not even thinking there would be snakes. I saw one last yr in the taters so I do pay attention around them but never near the squash or under my mj plants.

I am anxiously waiting my appt with an ENT surgeon. It seems like the time is going so slow. I just want this thing gone so I can move  on with my life without the big C hanging over it. I am seeing a hand doc in Redmond this week to get a second opinion and to hopefully have some treatment after my thyroid is done. It is really painful in the morning and when I drive or try and carry something. My fingers are getting stiffer and stuck more and the palm is growing knarly and knobby with scarred fascia tissue. I know that will be another surgery and I just can’t wait 2 years for the VA to get through its waiting list. That isn’t even guaranteed it would be 2 yrs; I was told it could be 4! That is really awful when you think about guys who need things done and can’t work so they loose homes and their families suffer let alone live in pain for yrs. I think these things come up in my subconscious at night which is why I am having such horrific dreams.

On the other hand we had a really nice visit a week ago from Tim and Sandy. I love seeing them and they drove all the way from Foster City, CA to see us. We chilled out, took them to our rock picnic where they had a lot of fun and Tim met Mark Copeland whose daughter is a new hire at Stanford. So they had lots to talk about and got along famously. Sandy loved looking at the rocks and meeting people. We went on a very nice hike with them the next day and got to see the house from up on the hill. I need to go back up now that the outside is painted a new color of green. It looks like a new house with the addition finally painted and the doors are done in a darker Juniper colored green. The house is more of a sage green. It looks really nice with the greenery of the yard and especially will in the spring and winter. I just couldn’t paint it a dry bunch grass color like it is outside now although it probably would have been just as nice. When I get the plants back around the new foundation and we get the front flower bed back it will be really nice. I am planting some purple sage I saw that is so nice. It grows really tall with lavender flowers that are really full and beautiful. Sandy pointed it out to me and I want a lot of it for the yard. Plus the deer won’t eat it!

Well I think maybe my head is cleared a bit from the freaky dreams so I will try to go back to sleep.

A hike in Aug of 2011 to view the Crooked River Canyon

Wednesday, August 17th, 2011 | Author: steph

In April, prior to getting my Botox surgery for my bladder I suddenly noticed a swelling on the right side of my thyroid area. When I was examined by the docs for that procedure I mentioned it and they decided an ultrasound of my thyroid was in order. I got the ultrasound and was told a referral to an Endocrinologist was in the works. Mind you I have been diagnosed as hypothyroid for years and been on thyroid meds for a long time. My mother also had a rather large thyroid tumor removed shortly after I was born. Weeks turned into months and I started to get angry with the VA system for not getting this thing checked out. I finally threatened to call the patient advocate through an email to my nurse practitioner and within a week had an appt. for the doc. That appt. was as I expected: “you need this biopsied” and we can’t do it today but come back next week and we’ll do it. Since we were right in the middle of grouting tile-once you start you have to finish, we had to postpone the appt. for a week.

So I go to my Fine Needle Biopsy where they proceed to poke the shit out of my tumor 5 times before deciding that’s all it’s going to give up in the way of cells. That was a Wed. and by the following Friday I received a call from my endocrinologist who said “do you have a moment to chat”. I immediately sat down as I know those words usually don’t have a positive meaning after a biopsy. I found out I have follicular thyroid cancer (FTC) and will be having surgery after now having to see an ENT surgeon on the 1st of Sept. So here we are going on 6 months and no treatment! The good news I was told is this is the second best and  most common type of thyroid cancer. I was given a web site to check out and sure I did. What I wasn’t told is that it can be an aggressive cancer in women my age and can metastasize to bone and lungs. Now I am wondering if all those CT scans I had in 06-07 that showed funny lesions in my lungs had/have anything to do with this disease. I am also wondering if my diagnosis of Hystiocytosis years ago has a part. I do not look hypothyroid; I am thin and certainly not lethargic or fat.

I have researched this quite a bit and the options I have are surgery for removal of the entire gland and radioactive iodine 6 wks afterwards or partial removal of the thyroid also with radioactive iodine. I won’t know about lymph node involvement until I have a CT of my neck and or the surgery to check for them. I have developed difficulty swallowing and some hoarsness in my voice but that is normal. When I think back on it I had a period last year of extreme hoarsness. I couldn’t hardly talk for several days. I do have some tenderness on the left side of my neck; opposite side of the tumor and do hope it’s not nodal involvement. I will inquire if my periodic right ear deafness is any way related also.

As for coping with this I will do fine but am worried, which is perfectly acceptable. I called my friend Judy whose husband just underwent surgery for prostate cancer, and was lucky he only needed surgery and Judy has had a bilateral mastectomy years ago for in situ breast cancer. I have tremendous support from my husband’s family so I know I will do ok in that respect. What gets me is the possibility of finding out this is metastasised to somewhere else and we have just spent $38,000 for a lap pool/sun room addition to our home that I won’t get to use for long. I guess I will cross those bridges when I come to them.

One thing I have noticed is the feeling of mortality creeping over me, especially when I read that FTC is more aggressive in older women. I am just hoping the adage that 60 is the new 40 and I will find that true to this disease:) I also have a sense of urgency for getting things done like the surgery-I want it out of my body right now so my patience with the waiting game of appts. is not so easy. I don’t think that is odd either. I believe once you are diagnosed with any kind of cancer you want something done now, not tomorrow or 3 months from now.

On a real positive note we have our pool/sun room nearly complete. The pool is essentially done with water in. Tomorrow we should get to try it after back washing the filter and adding the bromide. I have my swim tether already to go and I am just waiting for the solar water panels to get the water temp up to a tolerable swim temp. No more having to drive to Prineville to share lanes with multiple swimmers and I can even swim nude here! A definite advantage on saving suits! This pool is what will keep me going and I know postoperatively I won’t be able to use it till my incision heals but we have several weeks of warm weather left.

On another positive note we are inundated with great zucchini, broccoli, onions (Walla Walla’s-yum), and I picked my first vine ripened greenhouse tomatoes this week. My mj is starting to bud like crazy and I have all female plants left and they are looking mighty fine. I do hope the taste is better this year. It smells real spicy and looks much more resiny. On that note I shall try and return to sleep!

Wednesday, August 17th, 2011 | Author: steph

You betcha living in the country can prove to be challenging. Timmy came in the other night with his face bleeding and swollen; it had been nice and hot so guess what happened to him? He either stuck his nose in a rattlers hole or got to close to one cause that is what happened. He got bit through the muzzle. Jerry and Timmy toddled off to the emergency after hours vet who hydrated and medicated him and sent them home to come back in the am. He was worse by the morning. Lethargic, so much more swollen and looked like shit on a shingle. Sort of like being hit with an ugly stick…hard. The vet checked his kidney studies which were awful so he ended up getting an IV plus Lasix to jump start his kidneys. The venom shuts them down and makes animals anti coagulate. He spent the night there getting great care and got to come home the next afternoon. He’s been hobbling but looking better. He is still very affected by the venom you can tell. His little gonad area is bright red as well as his armpits-like super capillary fragility. He looks better in his muzzle and swelling is getting better. We hooray when he pees!! Poor dog he is using all his lives up too quickly. I have noticed he doesn’t wander far from the front of the driveway; I am sure that will change as he feels better and better. Hopefully he remembers the sound associated with this pain! HZZZZZZ

We are finishing our pool/sun room. We have the cedar up and are starting on the tile tomorrow. The windows are all framed in with cedar and will be findished with tile. It is going to be cool. We have lights and it is really pretty out there at night. I can’t wait to swim some nights when it is warm like now! We hope to have water in it by next weekend when we will have Tim and Sandy here. They can help us test it out! I ordered my tether already and need to get some dumbells. We have speakers in there for music and an incredible view. Even being used an hour a day for several times a week makes it worth it. We can use it as a soak tub when it is cold outside too. That is something I am looking forward to if we can get the temp up and keep it up when it is cold. Ohhh that will feel good.

Our frinds Rich and Rosanna parked a bit too close to a creek in Utah and nearly lost their trailer. At first they scared us to death telling us they were loosing everything but its not nearly as bed as they thought. They have a short in it somewhere and it did get grimy and nasty insulation but they have insurance and will be getting it fixed in Salt Lake City. They have insurance that allows them to stay in a motel so that’s nice. Beats staying in the parking lot like we did although I was just as glad to have our stuff than to be in a motel. Rosanna is afraid of bedbugs anyway. I told her to take their own sheets and don’t let the maids in!

Friday, July 15th, 2011 | Author: steph

I don’t like living in a room with a plastic wall; it can be dangerous as evidenced by what happened yesterday. Jerry was working in the sun/pool room when a big gust of wind came through and knocked over Mom’s corner curio cabinet full of glass and collectables from both of us. All I could do was stand in the kitchen and watch it fall; thought maybe it might take more of our glass rock shelves with it but luckily it didn’t. Instead it broke a beautiful Carnival glass bowl and a hand blown glass vase I got for Mom when I was 14 and on my trip to Arkansas by Greyhound bus. My first trip alone away from home to visit Aunt Helen and Grandma & Grandpa. What a wonderful trip especially after the time Mom and I had been having. I was almost out the door of the house to run away when she realized we both needed a break from one another, and she let me go back to her home town via Greyhound bus. I remember that trip because the bus was full of wierdos and strangers (of course it was the 60′s)! I bought her a beautiful vase in Jasper,Ark in the Ozark Mtns. close to where she was born and I remember giving it to her when I returned home. A peace offering I decided and I very vividly remember the tears in her eyes as she accepted and cherished that vase. I am not sure she ever used it but she used to admire it and talk about it like a secret treasure. It broke into so many pieces it ended up in the trash. I know it’s only a vase but I will always treasure the memories it holds in my heart. I have 2 very nice pieces of Ivory carvings to repair that will never have the same value they once had but they are valuable to me. I also hope I can repair the Jay Strongwather (?sp) gecko crystal picture frame I had Mom’s obituary picture in. What a treasure that one is too.

Weather here has been great. In the 80′s every day; garden is growing gangbusters. We had our first zuchi tonight and it was delicious. I have tomatos on the vine in the greenhouse and radishes growing there as well as I couldn’t keep the quail out of them this year. I have several mj plants growing and I do believe I am going to get lucky and have all female plants! The wind is making them tough and bushy. I planted most outside in the garden but do have a couple in the greenhouse. I like to do that to keep them seperate from each other although this year I planted them farther apart from each other.We have 3 kinds of squash, tomatoes, corn, potatoes, pumpkin, basil, cilantro, garlic, onions, broccoli, radishes and lettuce and carrots. I am still pulling cheat grass from around the garden; almost done but it’s been hard doing the garden and the shows at the same time.

We haven’t had the sage rat problem this year and while Jerry was doing some weed whacking he discovered why. We have a very large gopher snake living right near the garden so they are probably his/her meals. No more missing Basil or onions or garlic. Speaking of onions we have Walla Walla sweets growing that are getting huge. And just in case we can’t afford garlic I planted at least 12 of them! Steph gave me some pretty pink Peonies this week and I planted them. The front yard is still a mess but it may be until next year! We are in no hurry to do it as we have to finish the floor and walls of the sun/pool room ourselves. We have all the tools and supplies; we are just waiting on the sheetrockers to get their shit together and get it done so we can do our part. I hope to be able to use it before we take off for the winter but it may be close.

I am feeling better and more rested than last time I sat here to write. I haven’t been pushing myself quite as hard as normal and I think that is good. I feel kind of lazy at times but no guilt since I know it’s the right thing. When the tingling in my legs and feet gets bad and I want to go back to bed at 11am then I know I am overdoing it. My bladder is still doing very well…can laugh without worrying about peeing my pants or rushing to the bathroom but best of all I get to sleep almost all night without getting up. It’s been so many years of getting up several times a night that I truly treasure sleeping all night! Two weeks and I finally get the thyroid nodule looked at and then my left fuck you finger gets checked again. It’s still locking up pretty good and I have good deal of fasciaitis going on so I expect the doc will want to fix it and I do hope so as I don’t want to have a permanently locked finger.

3 years ago next week I married this man who has made my life a real joy and pleasure. We will celebrate by maybe going out to eat but I just want to enjoy being with him at the home we have made together. We have so much fun; he makes me laugh constantly and understands my foibles and brain farts. He doesn’t get mad at me like Le used to if I forget things. His family accepts me for who I am and Jerry takes the good with the bad. He has taught me that guilt is not something we do in this house and I love that. I grew up with too much of it; I should have been a catholic!

Monday, July 11th, 2011 | Author: steph

Oh I don’t know where to begin except I feel like an ass right now! I just heard from Jerry’s daughter who was concerned that some of her friends who I have commented on on the Facebook site feel I might be haunting/stalking them. I feel so bad that someone would think I could be capable of that-I have never meant to be that way…many of their posts I find interesting and just want to comment on so I do. I will refrain from doing such unless friends with them. I didn’t know that was improper etiquette for the net! She said they could tell I was tracking them and I don’t even know how to do that?? I did get a giant list of friends come up yesterday that I didn’t even know yet said I had mutual friends with?? I didn’t friend any of them except family and maybe that’s what she meant. At any rate I will stop/ not comment unless I know the person.

Caryn, Jerry’s dear cousin,who I really like, has had a small stroke. She is only in her early 50′s and is way too young for this. She is doing ok but is in ICU at St.V’s in Portland where it sounds like they had to do an endarterectomy which means she is really lucky it wasn’t worse! Her mom is with her and Erik her son let us know. Bless his heart he is being a trooper. I know he loves his mom to death even though she has had to be hard on him in the past year. Oh how I remember that with Max.

I am so tired today. We spent the past weekend at Bend’s Sat. Mkt. and did ok. We more than covered our booth and reg fees and I sold a couple of nice necklaces. It makes me feel better when I actually sell something. I picked up some steampunk trinkets to work with and will try my hand at some little different things. Right now all I want to do is sit and relax. Yesterday I didn’t do much cause my energy was so low and this am I woke so early to the housekeeper changing times again that I couldn’t go back to sleep so now I feel really tired. I have so much weeding to do and Steph has Peonies for me to get at a rental house of theirs but I think I will wait till Wed when we have to go to town for hair tx to get them.

The sunroom/pool room is needing its sheet rock put up. It was delivered last week but Marshall is doing a Brew Pub in town and is working on us and them at the same time. I would just like to get rid of the plastic wall since we have managed to shred it pretty good going through it. Both us and the dogs use it for a door to the front door!

I haven’t sat down to write about our Pow Wow adventure either! It was a busy 5 days for us setting up and yet we made the amount of $$ we hoped to so we did quite well. Added to the Bend Mkt and we have done good for our first time doing this selling thing. We are doing a 2 day sale in Bend over Labor Day and hope to sell more for a pre-Christmas sale for people. I don’t think I could be one of those folks who do it all the time. It’s a lot of work to make sure things don’t blow away and cattering to the public is just awful sometimes but mostly good. We met a lot of nice people and hope we gathered some interest in our club.

Prior to Prineville’s show we went to Virgin Valley for opal mining and did so well. Jerry just ordered 3 more jars for the fire opals we found. We had 2 large ones put in jars while there but knew we had more; just didn’t know the size of jars we would need. Now we can display them all in water and enjoy looking at our hard work. We do have some nice dry opals to work  with too. Our Sunstone caper was a good one also. We came home with some nice larger yellowish ones and several that have pretty good Shiller in them.

Life is slowing down a bit now for a few days; thank Goodness. I have felt like the pace I have been keeping is burning me out a bit too fast so it feels good not to do anything but be a computer nerd for a day or two. I can tell I am really tired cause what Morpheus said to me has really affected me-I am too teary and feel really bad about what she said. It’s that old sensitivity thing coming up again! I think maybe I’ll go through my friend list and make sure its ok and up to date. I don’t think a lot of people except Jerry& Judy  know how my brain can get whacky. My mouth will get me in trouble without even knowing it and in this realm of the written word the same thing can happen. My filter for saying things just doesn’t work as well as it used to and that’s hard to explain to people when they see you looking so good. They don’t know the cognitive effects of MS like those of us with it do!

Saturday, June 11th, 2011 | Author: steph

Oh I am really feeling the fatigue today; plus spasms in my thumbs and hands. We have been so busy with the garden and I cleaned the house for 5 hours prior to Max and Kris’ visit this week. They spent 4 days with us and I was so glad to see them go. I love them both dearly but Max can still be so opinionated and stuck in his ways. He couldn’t decide what he wanted to do other than eat ribs which we don’t eat! We did take them up to Painted Hills and that was nice. A gorgeous day finally…Kris had a good time and I got a really good pix of both of them.

I am frustrated cause I am so tired I just have to sit and do this or read or sleep until I get my energy back. We made a fast trip to Portland 2 days ago to see a great concert and that was after watering the plants and cleaning Rocky prior to the trip the same day we left. Then we get to the Crystal Ballroom in Portland and they have no seating on the main floor-its a dance hall and the only seating is 3 flights up which we did. Jerry was nice enough to convince 2 girls to move over and let me sit on an end seat while he sat on the hard stairs. I gave him my sweatshirt to sit on cause he has no ass! It was an awesome Airborne Toxic Event concert that was over 2 hrs. We enjoyed it albeit a bit loud for our old ears. I love this band and love love love the lead singer Mikel Jollett who is french. He said however he was raised in Salem and had always wanted to play the Crystal Ballroom. They only have a couple of CD’s out but they are amazing cause they use an electric violin and electric base violin. That and occasionally have a big band backup as well as young girls choirs. It is awesome lyrics and socially aware music. I do believe this band will make it quite big if they stick to the type of music they play and don’t get sucked into the mainstream shit land of video. They played the LA Disneyland Concert Hall-that’s how we saw them on TV special and were hooked. Jerry went to their website and found out they were going to be in Portland and we bought tickets. It’s the first concert we’ve been to except one last summer here in the park. The blues festival in PDX was the biggest last concert for us.

I am seeing the hand doc in 2 days to have my trigger finger scar checked for a release. It is cramping into a trigger finger every morning and I have to keep stretching it and it hurts like hell when I do that. I am hearing birds flying into our windows!! what is with that?? I am also having spasms so bad in my right thumb that I can’t hardly open some jars or packages anymore. I do believe I have more will than energy at times and have been pushing myself beyond belief. I am not sure how to handle that except just go take a 2 hr nap and sometimes that doesn’t help. I wake up grumpy and confused and feel like I need another 2 hrs! Caffiene is helping a bit but god how I hate this disease sometimes.

No word on my thyroid lump-still waiting to hear from the endocrinologists for an appt. I don’t know how long it takes to get the appt but I am about to call the advocate to make it happen this summer. I know it will probably be benign but my masseuse won’t give me a massage until I get it checked to cover her ass. She says it needs to be checked before she can safely do any massage. Maybe that has something to do with my increasing fatigue too?? I was a good generous person and sent a walker to a gal with spinal stenosis who thought she might have MS until she finally got a diagnosis. She was having to use a wheelchair and so wanted to be moving her legs. My walker was/has been sitting for 3 yrs now so I decided to donate it to her so she could get around better. We talked a lot over facebook and I hope I gave her some good advice on how to take care of herself. She and her partner are moving off of Stone Mtn at Morph’s into Oakland to be in a better situation medically and physically. That is a great idea and her partner Jamie (guy) agreed it was a smart move. She will probably need a lot of PT and eventually back surgery so she needed to not be on top of a mtn. with an RV and a very difficult situation getting around. almost impossible from a chair.

Our sun room/pool room is walled in and pool is ready for plumbing and liner. We left 2 days ago with only a floor and came back to framed walls with window framing done. It is awesome!! It will give us a real nice addition to the house and I am very glad we chose to take the chance and do it. We actually were gonna cancel due to the economy and I was worried about VA $$ and budgets but finally checked with someone and found out no worries to be had. So we decided to go for it and so far have managed to pay for it out of pocket and not use the $$ we got a line of credit on. We will probably have to dip into it a little but we are hoping not to. We still have great views and I have 3 feet around it for w/c or walker use if necessary and six big windows. We will be able to start plants out there or keep plants there. I will be able to have indoor hanging baskets that won’t be blown to death by wind!! Our front yard is a mess but it will be fun putting it back together and make it ours. I saved all the tulip bulbs and found they had multiplied like crazy but were just not growing so far down in the soil as they were planted. We have daffodils and kept all the lilies and plants that were in front. just put them in large buckets and wheelbarrow till we can replant. My Iris is nuts this year. They are so beautiful. We have hundreds of them and they are all blooming so it is quite pretty. I cleaned them so well last year that it must have really helped. They spread out like weeds and I still have some to replant but I bet it will wait for next yr.

Cramps are worse so I have to shut up. On a good note the Botox the doc did on my bladder really has worked. I don’t wet myself anymore and can go so much longer without having to go. Very rarely get up at night to go now and that is amazing!! I do have to cath cause I can’t go without it. I hope it lasts as long as she says. I have been able to get off Tolteridine which I hated; but haven’t gotten rid of it just in case. I will plan on having it done again next spring when we return. I hope I can wait 2 weeks for my hand repair as I have some jewelry I have to get done before the show.

Sunday, May 08th, 2011 | Author: steph

No this is not an article about facial botox. It is Botox in the bladder for severe spasms because of MS. My urologist, who is by the way, a very cool doc. has been trying to convince me for 2 years to have this done and until this past winter I have been saying No. Mainly because of fear of a new procedure and worry of being put to sleep to have it done. However, it was done under monitored sedation and I don’t remember a thing ! No being put to sleep. It was done via a cystoscope and 30 injections were given to my bladder. I have to admit it was painful when I woke but I think part of that was the catheter they put in me and forgot to hang down lower than my  rapidly filling bladder. It hasn’t been as easy as I thought or as quick as I had hoped but I recently read it can take up to 2 weeks to see if it works. So far my bladder can hold up to 400cc which is far better than 200cc. I am still on the god awful Tolteridine but hope to get off that as soon as the Botox kicks in. This is a relatively new type of procedure but since I am allergic to Baclofen I couldn’t have an internal pump placed with that drug and I am actually glad! If I get more than 2-3 hours of sleep at a time it will be well worth it.

Now for the thyroid nodule I have decided to grow. I did get an ultrasound and the nodule is slightly smaller than a ping pong ball and has some suspicious spots. It does need a biopsy but I am playing the waiting game with the VA. I am so glad only 5% of them are malignant but it would be nice to know before it stays there for god knows how long. I have heard I am on the endocrinologist list but who knows when that will be. It just makes it hard for us to make plans when we don’t get the MD dates till the last minute.

Had a nice visit with Mirabai and Paul and cute little Annalise. She is cool with us now. She actually let us hug and cuddle with her this past visit. We hope to see her more this summer so we can bond better with her. I would love to have her come visit us and see the country but I think that will be awhile.

Life is good…Max is doing well; he even called to wish me a happy Mother’s day. He is so cute he doesn’t miss this day. He can miss all other holidays but not Mother’s day.

Tuesday, April 26th, 2011 | Author: steph

I am so glad I started this blog because it saves me from handwriting in a journal. Plus I hope someone somewhere visits it to see how one person is dealing with this bazarre and often irritating disease.

Yesterday and today are those irritating times. Yesterday I woke up at 0430 and couldn’t go back to sleep to save my soul. I listened as my husband slept peacefully snoring and was so jealous. I was so tired and frustrated I couldn’t stand it. When I got up I decided I needed some retail therapy even though it was  necessary and nothing I bought was very exciting except a hot iron to get rid of the newly frizzy hair I seem to be growing!! I started the morning by dropping my glasses and when I stood up to find them, (not putting on an extra pair-how stupid of a blind person), I stepped right on them bending the crap out of one side. So I had to go to town to get those fixed and just took the list of necessary items I had been saving for my trip to Redmond tomorrow. I got starting soil for seeds, found a Nyger feeder for seed and hopefully to draw some pretty gold finches this year, two green rugs for Rocky so we can sort of keep the floor clean and warm when I get up at night, a roast I am now cooking and sour cream to make Jerry some strawberries & cream muffins. Oh yeah I got a cheap shelving system for the studio so Jerry can have shelves for all his silver tools and improve his work space. It is so much better now. My saving grace was getting to watch Nurse Jackie which makes me laugh and that is so necessary with M.S.

Today started a bit better. I made the muffins and they are yummy. I can see how the British folks like them. It was our way of paying respects to the upcoming marriage of Prince William and his lovely bride. However while reaching for a pan I pulled a rib out and have been in pain ever since. Nothing like falling apart at all ends! The roast is cooking and smells oh so good. I will be using up the last of our carrots from last yearas well as some taters we left in the pump house!

I know I have been worried about my upcoming bladder procedure even though I will be asleep; it’s just not knowing how I am going to do after that intrigues and frightens me. I also am concerned about the nodule on my thyroid; haven’t heard from the doc who read the ultrasound which I guess is good news even though I know it’s going to need a biopsy to confirm it’s nothing but a nodule. I just don’t want them to forget it is there and let me develop a much larger one than is already there. A adams apple is not on my list of things to change about my body! To top it off my M.S. N.P. is talking with my neurologist about taking me off Copazone and maybe trying a drug called Tysabri which is a once a month IV treatment. The problem is with us travelling we would have to make special arrangements to have it done at strange VA hospitals I have never been to and don’t have a doc at. You would think with an Rx for it I could just go to their day surgery clinic and get it done. We are always close to San Diego when in CA and Phoenix or Tucson when in AZ. Those two places would probably do it for the winter for us as next year we are going mostly just to CA and AZ for rocks. I freaked myself out though by reading about it. It can cause encephalopathy that can kill you and can really suppress my immune system so I would have to be really careful around anyone with a cold since I have asthma. What to do what to do. I think I would prefer to stay on the Copaxone for awhile longer despite the loss of fat I am getting. I just can’t seem to gain the weight I need in the right places. On a good note my bone density test showed my left hip is getting better so I don’t have to worry about falling and cracking it as much.

I am now on Gabapentin again to try and calm the nerves in my back and legs. I have been on it a week and I really can’t see a difference yet. I may have to go up to 200mg/night but Mary (M.S. N.P.) wanted to try 100mg since I am so sensitive to drugs. I did join a new M.S. website to share my thoughts and reasons for getting Botox in my bladder. It sounds like a lot of people don’t really know it is a good treatment so I explained my thoughts and Dr. Davis’. I am so glad to have a progressive urologist. It will mean getting rid of Tolteridine which I will gladly dump-it dries me out so bad its not funny.

I am fortunate I have a very understanding husband. I just tried to work in the garden getting the soil ready for lettuce and my back is just to crampy. I managed to get one row ready for lettuce and Jerry went out and started a flat of lettuce in the greenhouse! He’s so cool! I did manage to get the first compost dump of the spring done!

At least I don’t have to worry about having cancer (yet). I called Judy the other day and Bill has prostate cancer so will be needing surgery and ?? what after that. At least it is one of the few really treatable cancers. All that right after her neck surgery. They are getting hit with medical bills like crazy lately. For that I am thankful that I get my care (using the VA), for free. I can’t imagine what the bladder and thryoid work would set me back with medicare. Medicare wouldn’t even pay for the bladder work! I would just get to suffer.

Whew I feel better after dumping all this here. I am glad I can have a positive outlook even though I shed some tears yesterday morning. I know that’s to be expected and I haven’t shed any in years so maybe it was just time.

Sunday, April 24th, 2011 | Author: steph

After leaving Moab we travelled to Boise,ID to visit with family. It was a glorious day while we were there; 75degrees and sunny. We were hoping that nice weather would hold for us as we travelled from Boise to Prineville but mother nature decided to bring us home in clouds, rain, snow and flooding on Hwy. 20 at Burns,OR. Once we got home it was frigidly cold as we expected.

We were only home for a week and we had to travel to Portland for my    semi annual M.S. visit. I also decided I had had enough of dealing with incredibly bad bladder spasms so scheduled botox surgery on my bladder while in Portland. To complicate things more I discovered a thyroid nodule so that had to be checked. I am doing well with my M.S. except I am loosing a lot of fatty tissue on my thighs where I have given Copaxone shots. Three years of injections; despite rotation of sites has taken a toll on my skinny body. I am being evaluated for a once a month IV medication but with our travels during the winter it may not work out.The other problem to deal with are muscle spasms that just don’t seem to go away and of course interrupt my sleep so I am now on Gabapentin. I do hope it can help the nerves settle down a bit. The bladder surgery will take care of the bladder spasms for up to 8 months and boy am I looking forward to getting more than 3 hours of sleep at a time!

The best part of our trip to Portland was seeing cute little Annalise, our grand baby who is now walking, jabbering and loves books. She actually let us read and hold her for a bit but when we had to leave would not cooperate well with getting a good picture with Jerry and I:( At least we did get some good up to date good photos of her at the park.

15mos now

playing at the park

a departing picture-getting ready to scream!

such a change from 6 mos. ago-now a toddler

She was happy here! She has changed so much since we saw here last November. We will get to see her again the first week of May so we do hope she will let us take a picture of all of us together using the timer and tripod.

Sunday, April 24th, 2011 | Author: steph

our home in Moab for 8 days-only day we had a fire due to winds

A couple of years ago Jerry and I thought about coming home via the northern route through Utah and Idaho but the weather was so cold and snowy we had to re-route through the coast. This year we got lucky and the weather stayed warm so north we went.

Four new RV tires later we were on our way to Moab. I had always wanted to see Moab after hearing so much about how beautiful it was and how many rocks could be found there.

We found a nice small campground on the Colorado River and began to search for fossils and rock. Our first trip was to the Potash area for fossils. We found crinoids, large shells and a snail. We searched high and low for dinosaur bone and think we came home with one small piece.

some of the crinoids, & shells we found

After closer inspection of the “bone” we thought we found we decided it was just a conglomerate of rock and not dino bone. However there is a lot of dinosaur bone in the area. On the way to Potash there is a huge slab of rock that fell off the cliff and is impregnated with dinosaur footprints. I actually thought they couldn’t be real but they are. There are lots of excellent petroglyphs along the way to Potash also.

Actual Dinosaur prints from Moab,UT-Amazing

Here are some excellent Petroglyphs taken from the same area. There is a lot of intense climbing done in this area but fortunately the state of Utah has preserved this area and has made it off limits to climbers.

faded but saved pets

more petroglyphs

And still more petroglyphs:

The most impressive place to see in Moab is Arches National Pk. The following pictures are from there. It was absolutely so impressive that even these pictures don’t really do justice to the beauty you see.

Double O arch

Arches park lies atop and underground salt bed that is basically responsible for the arches, spires, balanced rock and monoliths that you see throughout the park. Time, exposure to wind, freezing and sun causes the sandstone to break off in bits and pieces forming some incredible rock.

Turret Arch

a knarly tree in the park

Unfortunately my camera died just as we approached the Landscape arch which is the largest arch in the park. It is massive and beautiful and I do wish I could post a picture of it here. It is on my facebook profile so you can see it there.

On the way home I took a few pictures of the park as we were leaving with the snow covered mountains in the background. Such a beautiful site and such a beautiful place to be leaving. Our time in Moab was all to short but we had to press on to Idaho and home.

Leaving Moab

wildflowers and red rock

I couldn’t help but end this post with this picture. The red rock with the bright little purple flowers was something to behold. I can understand why Moab is a mecca for all kinds of recreational activities.

Tuesday, April 12th, 2011 | Author: steph

Jerry and I left Chaco Canyon Nat.Pk for Mesa Verde. Little did I know that my mind would be blown again by more fantastic Native American Culture. I am not sure which I like the best but I think Mesa Verde has Chaco beat in my eyes. It is so incredibly awesome what our Natives did to survive especially in such a challenging area as the mesa’s.

my arms & legs are in 4 states and my ass is pointing towards the stars!

Before we got to Mesa Verde we went through 4 corners where you can have each extremity in four states at the same time. I just had to ham this one up.I didn’t realize my body could still get in this position!  By the way after all our repairs in TX. this year, shortly before we got to 4 corners we blew a tire on Gypsy and had to put back on the wearing tire we had replaced with the spare in Chaco. We promptly headed towards Cortez which, fortunately, was only a few miles away.

Ok now onto some good photos of what Mesa Verde looks like.

Spruce Tree House, Mesa Verde

This is the 3rd largest dwelling among several hundred within the park.It was constructed between 1200-1276AD by the Anasazi. It contains about 114 rooms, 8 Kivas and is built into a natural cave 216ft in width and 89ft at its greatest depth. It is thought that it was home to about 100 people. It was a spiritual feeling walking amongst these dwellings.

cliff dwelling at Mesa Verde

before the cliff dwellings came these dwellings called pit houses

The first ancestral Puebloans settled in Mesa Verde 1400 yrs ago. They were known as basket weavers for their skill at the craft. Previously nomadic, they began to feel the need to settle. Farming replaced hunting and gathering as their main livelihood. They lived in these pilothouses clustered into small villages usually built on top of the mesas. About the year 750, after their population had multiplied, they began to build houses above ground with upright walls. They built their houses one against another in long curving rows, often with a pithouse or two in front. Pithouses eventually evolved into Kivas. From then on they were known as Pueblos, a Spanish word meaning “village dwellers”.

Square Tower House

This is the tallest cliff dwelling built here at Mesa Verde. It rose to 4 stories tucked nicely into this hollowed out cave.

closer pic of the square tower house; awesome building these Natives managed

excellent example of a Kiva

This Kiva was multi storied and obviously built to hold a large number of people for sacred ceremonies. Ventilation and seating were installed and it is simply amazing at the architecture they were able to construct.

If any one reads this there is so much more to Mesa Verde than what we were able to see. Quite a bit of it wasn’t open due to the early season. There are wonderful guided tours into the “Big House” and lots of incredible trails to discover other ancient dwellings. I am so glad the National Parks system chooses to keep this place as close to the way it was so many years ago.

What happened to cause the Puebloans to leave the mesa? Theory has it that there was a 28yr drought during their stay here and they had to eventually move on to other areas to find food and shelter. Most went south to Arizona or Mexico.

fossils found in the dwelling and mesa verde area

a small sample of tools used