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Quick summary

I got a few emails from people wondering what happened. I made the posts about Rhett and I private. I forgot that people who only read the blog on ocassion would be clueless what I just went through.

 I loved Rhett with all my heart. Unfortunately it did not work out between us. His default emotion was anger. I ended up in a Safe House for people escaping domestic violence. It was a very, very, very hard thing to do. I spent most of a month there. During that time I also  gave our relationship more chances than I thought possible. 

 One day I was prompted to take Rhett to the temple. He was wonderful while inside and very angry outside. God let me see the truth. A huge burden was lifted off me as I made my final decision. We are getting divorced. Even my bishop agreed it was the correct choice. It’s still a sad choice to have to make.

 As always, I try to make the best of what life hands me. I was once again homeless and alone and confused. What always “cures” that??? A road trip!

 I am slowly but surely making my way from SE Arizona to Oregon or Washington. I am hoping to go live near the Lake Oswego, Oregon temple and be near my daughter and her family in Portland.

 I do not know what’s in store for me. I started a new blog for the new me….

 Wendy The Wanderer

 

 

Anybody ever try this?

I only have a few minutes to be at the library. Just came from an appointment and managed to leave home without reading glasses.

http://www.walmart.com/ip/T-mobile-Prepaid-4G-Wifi-Hotspot/16002378

Anybody know how these work? Have you tried one or known someone who has? What do you think? I put in my zip code and it says the device will work here. I’d have to order online, though as the local store does not have them.

Sounds interesting, huh? $30 for unlimited internet plus 100 minutes of cell phone.

From a random parking spot in the middle of the night….

Saturday night I tried several spots to connect to wifi. I discovered several open connections within a mile or so of the apartment. Some were slower than others. It’s good to know that Home Depot has wifi. I was outside of Burger King and employees kept staring at me. Worse, was the smell. That place is such a dump! Inside is dingy and outside is wicked bad rancid and all-around nasty :-( Yuck. After hanging around the place lately, I know enough never to buy food there.

I actually sat down and figured out how much money we have to live on in April. It’s scary. Less than $900 for 2 people and after fixed expenses for rent, utilities, Rhett’s phone and our tithing, we will have about $200 for things like gas, groceries, laundry, etc. Forget another phone or internet. It’s unrealistic. Two months ago the car repair guy said the Toyota needs a $200 repair. It HAS to be done soon.

The good news is that my April IVIg is going to be infused half a mile away from the apartment. That is true cause for celebration!!!!!! :-) I am supposed to go yet again to the Phoenix area to be seen at the Barrow’s neurological clinic. I sooooooo don’t want to make the trek or see yet another doc.

I don’t think I wrote about the oncologist/hematologist who is now overseeing my IVIg care. I LOVE the guy! He is very gentle, kind and sweet. He understands immune problems like mine more than any doc I have seen in a long, long time. The local hospital cannot get IVIg, so this doc is going to be bringing it from Tucson for me :-)

We were talking about my Vermont oncologist/hematologist who I also dearly loved. I explained the months of blood transfusions I had to get until I started getting regular IVIg. It seems this sort of doc is the only kind who understands how my immune system destroys the red blood cells, making me severely anemic. The more we talked, the more the guy acted like he knew exactly what was wrong with me.

It’s frustrating to have multi-system medical problems. Usually myasthenia gravis is treated by neurologists. In my opinion, that sort of doc is one of the most rigid, inflexible thinkers. They know what they know and are not real good at the whole picture. If only there were docs like “House” in the real world! There needs to be someone who sees me as a whole person instead of a neurological, rheumatological or other “problem”. My other major disease is mixed connective tissue disease. That includes rheumatoid arthritis, lupus, scleraderma and a bunch of other things. People with lupus related illness are also at risk for every other sort of autoimmune disease, including myasthenia gravis. I bet there are more people with their own private combos of different diseases than there are people with clear cut, named illness. Docs hate uncertainty. It seems to make them feel inadequate and also afraid of lawsuits. Many docs would rather dump a patient like me than to figure out how to treat me. My New York experience was like that.

The whole fighting for my medical care thing can be a total nightmare. It wears me out. It wears me down. I have a huge list of calls I need to make on Monday. Lots of doctor referrals, medical equipment dealings and paperwork. I am still battling for mileage reimbursement. Driving to Tucson and Phoenix seriously cuts into our money for food and other needful things.

I found out a VERY COOL perk to being over 55 :-) The local college offers free tuition. YES! In my younger years I was an avid student. If I can fit in a class or two amidst all this medical stuff, it sure would be nice! I went through the college catalog and circled all the things that interest me. Ummmm….ooooops! That could take years. I found classes in quilting, scrapbooking, all sorts of crafts, computer, desk top publishing, entrepreneurship, conversational Spanish, digital photography, Mexican-American culture, Indian American culture, Buried cities and lost tribes, astronomy, Natural History of the Gila Valley, Ecology of the Gila River, Gourmet cooking, Geologic hazards and disasters, Sewing, Renewable Energy Technology and Technical Report Writing. Those are just the MOST interesting to me. Lots more sounded good, too :-)

It’s the middle of the night. I slept all afternoon/evening and woke up hot and sweaty. I think the last 2 days have been very mild “IVIg flu”. Folks at church were amazed to see me walking and standing like an almost normal human being :-) I only got to tell a couple of people why I’m better. Explaining the whole MG/IVIg thing is tedious, so I generally only tell it to the folks I’m closest to in real life. I am still ecstatic to be feeling better!!!!!!!!  :-)

Thoughts I need help with

“Can we not appreciate that our very business in life is not to get ahead of others, but to get ahead of ourselves? To break our own records, to outstrip our yesterdays by our todays, to bear our trials more beautifully than we ever dreamed we could, to give as we have never given, to do our work with more force and a finer finish than ever—this is the true idea: to get ahead of ourselves.”

Thomas S. Monson, Ensign, Aug. 1987


I am going crazy without the internet. I very much want to find a solution good for both home and on the road. I need a phone that can also be a hotspot. The hardest thing is researching WHAT to buy. I wish there was someone to help make decisions! It needs to be a no-contract plan that costs no more than $50/month. Of course, if money were no object, I’d get an iPhone. I like Apple products better than any others. Any recommendations? What would you buy if you were me?

I am definitely wasting money by driving around to get online. But…I also enjoy going somewhere, especially at night when it’s cool outside. This afternoon I fell asleep for a few hours after taking my meds. When I woke up, I was soaked in sweat and the apartment is still hot hours later. I HATE having an oxygen concentrator instead of liquid oxygen. It costs a lot of money and it’s heating my apartment in a climate that’s too hot most of the time.

As I walked down to the laundry room, I was trying to come up with solutions. I’m wondering if I can put the oxygen concentrator out on my balcony and then somehow thread the tubing outside along the wall and into the bedroom. The balcony is off the living room. The hard part is plugging it in out there….how to make the cord and the tubing able to go out, but still be able to seal the door/window. Then, of course, I will have to worry about sun and rain. Grrrrrrr……lots of obstacles. I have to do something, though…it’s crazy to heat up this place and pay extra to air condition the whole apartment even more. If it’s this hot in March, it’s going to be unbearable this summer :-( I already have the window and sliding door wide open, plus all 3 ceiling fans going. I am sooooo stressing out about utility costs. Sigh….

Saturday I drove all around town, going to various garage sales.The bargains of the day? I got another wooden chair for $2, a fabric shower curtain for $2, bedroom curtains for $3, 3 pillows for the RV for $3 and 4 books for $1.75. What a difference the shower curtain makes! I had bought a $1 cheapo liner that’s very flimsy and does not seal well at the walls. Now with the fabric backing it, it holds up better :-)

The apartment came with blinds. I assumed that they blocked out stuff and could not be seen through. WRONG! I was outside one night, looked up in the dark and could watch what was happening in my bedroom. I hate to think how often I undressed in front of the window :-o Of course, my $3 curtains meant I had to go to WalMart and buy a curtain rod. I tried using string, but that looked awful and sagged, so went and spent $2.67 on the right hardware.

The one piece of furniture that has been most elusive is a desk. So far, no luck finding one at garage sales or thrift stores. I’m looking forward to having my very own spot to sit and read, work on my notebooks and mess around on the laptop. One of these days….

For the next 2 weeks, the temple is closed for cleaning. I am sad not to be able to go. I will appreciate it even more when it reopens, though! I need to spend more time doing genealogy research so I have more family names to take to the temple. I’m finding myself looking for direction and purpose around here. By no means are my medical struggles over. I’m still waiting for a half dozen pre-auths for tests, procedures and therapy, but someday it will be easier, right?!?!?!??? So far, much of my time here has been trying to get appropriate and timely health care. It can feel like a full time job.

Rhett needs stuff, too. I finally got him down to get an Arizona ID and signed up to vote. He has been sleeping more than he’s awake and it’s hard to pry him out of his chair or bed. I am worried about him. He is not the Rhett I have known and loved. I try not to talk about him too much on my blog, but I’d like to ask for your prayers for him. Something is not right. I have several appointments coming up for him to try to figure out what’s going on.

Life has been both wonderful and full of stress…much more stress than usual.

Thank you Joe :-)

 Rhett’s new favorite soda

My friend, Joe, wrote and asked how come I don’t sit out in my RV and use an inverter. Well…I realized that my reason was because it did not work with my computer…but that laptop is long dead and gone. It died from charging issues. Maybe it was just that particular computer?

So tonight I pulled up in front of McD’s and crawled in the back to find the inverter. It works with this laptop….at least for now. It will not charge up  the system, but is running off the RV battery’s power, staying at a constant 96% power. That’s better than going inside and fighting for the only plug at McD’s or Burger King!!!!!! :-)

Thanks Joe :-)

It seems there is always an issue with one or both laptops I have. They were both given to me and are old. I am THRILLED to have a computer at all, but the Compaq has a short that randomly shuts down the computer, pops the CD tray out at unexpected times and for no reason I can discern, the screen sometimes will not light up. If I shine a flashlight at it, I can painstakingly read a little.

The other laptop is an iBook G4 with an operating system so old that it cannot be updated. A few months ago it quit working, but I got a new power supply and that has fixed it for now.

Without free wifi like I had in the Adirondacks, I have to go places to get on the internet. Another challenge. Our library is closed on Fridays. I need to drive around to all the fast food restaurants and motels to see if anybody else has free wifi. Diversification would be good :-)

BUT….I’m thinking that by the time I drive around to get free wifi, maybe I could have just bought home internet? Hopefully once we have settled in to our new town, finances won’t be so tight.

When we got back from my treatment in Tucson, there was still food in the fridge and cupboards. What a HUGE relief to not have to be so careful with every penny and need to shop every few days for the specials. Being that much on the edge financially is nerve-wracking. Never did a few vegetables and hunks of frozen meat look so good! :-)

I’ve been through all  this before. I knew it was going to be tough. I just forgot how tough. And….before it was just me. Now there’s Rhett. He does not understand much about money issues. As I’ve said before, he was hit by a car at 8 years old, was in a coma for 6 months and got better over time….but he has a traumatic brain injury and is totally blind. He got a college degree after many years of hard work, but has never had a job other than work-study. When it comes to money, he still has the understanding of an 8 year old. Ever try to explain to an 8 year old boy why he can’t have what he wants, when he wants it? Sigh…..

One of our biggest arguments is that Rhett wants candy, soda and ice cream. We have not been able to afford it. Today he finally got some ice cream and while we were gone to Tucson, I shopped at a grocery outlet and a 99 cent store that sold big cans of Hansen’s diet soda for 50 cents each. I got him half a dozen as treats.

Of course, my big excitement is being able to walk! :-) On my way out the door tonight I talked to three of my favorite folks at the apartment building. They noticed right away that I was standing straight and STILL….not bending all over like grass in the wind. Since they have never seen me “OK”, they were shocked that I could be. Even I am constantly amazed at how much better I am doing!!!!!! YES! :-)  

I am walking better!

Now that I have had my IVIg, I realize just how awful things had gotten. The improvement is dramatic because I was in such tough shape lately. I feel like a new person :-)

Monday we got to Tucson Mountain Park after dark. I quickly found a spot to camp and fell asleep. The next morning we were 3 miles from the Arizona Sonora Desert Museum, so I used our 2 for 1 coupon for Rhett and I to get in. We walked around the museum for several hours. The day before even a few minutes would have been too difficult. WOW! :-)  :-)  :-)

I pulled over at a truck stop in Benson last night. I could barely keep my eyes open. We were back in our own place by 8 AM this morning. Right now I am inside the local Burger King for the first time. I tried McD’s, but the plug was taken. This place is a dump :-( Ick….but at least they have internet.

 I tried getting my meds from the pharmacy, then tried to do laundry. Neither place was open. So, I was hanging out here until I could finish my errands. Later, I look forward to a nap!

 Thank you for all your prayers and well wishes! I am soooooooo happy to finally have IVIg in me!!!!!  :-)

I am in the chair!!!

It didn’t look like this yesterday!

This day has been a looooooong time coming! And it almost did not happen today. I just took Tylenol and am getting IV benadryl and solumedrol. Next……IVIg. Yippppppeeeee!!!!!

When I got here, the paperwork had still NOT been done. It was all I could do to keep from bursting into tears. I’ve already been here 2 hours and hopefully will get the real, honest-to-goodness IVIg shortly.

We drove through snow on the road between Safford and Willcox. Then there were bands of snow and no snow the rest of the way.

Last night we slept at Kartchner Caverns State Park campground. It seemed way different from what I remembered when they first opened. Not sure if it has changed or my memory is faulty. When we came out of the visitor center, there were a few snowflakes in the air. By the time we pulled into our campsite, it was a blizzard. Wow!

Lucky for us, I had the oxygen concentrator, a small electric heater and an electric fleece blanket for warmth. Rhett was toasty up in the loft area under his down comforter. I wore sweatpants and a sweatshirt over my other clothes and was under my down quilt, a Mexican blanket and the electric fleece. I was not warm until I woke up around midnight soaked in sweat. Then I got cold again just before dawn.

The water pipe for our site was frozen, but the bathroom water still worked, so we took a shower before making our way to Tucson this morning. After temps in the 80′s, people were in shock to be camping in the snow…and that included us! It was on the painful side to take a shower and to go back outside. Heat? What heat?!?!?

Even though I now have the IVIg hooked up, I’m bumming. I never thought to ask about food. Never even thought about food issues . I am sooooooooooooo hungry!!!!! There’s food out in the RV fridge. Can’t send blind Rhett out for it and we are stuck here for a few more hours. DANG!!!!!!! The other places always fed me and it never crossed my mind to bring my own food and drink. Dang, dang, dang! And of course the solumedrol makes me incredibly ravenous. Sigh…..I could be here for many more hours! Even worse? I’m due for Mestinon and that’s in the RV, too!


I’m COLD!!!!

Brrrr…it has been up to 80 degrees lately, but a cold front blew through this morning and the temperature plummeted very quickly. I can see it snowing in both mountain ranges and there’s a possibility it might even snow down here in the valley! I heard there’s going to be up to 22 inches of snow in Show Low, AZ. That’s where I was going to move until I discovered the Gila Valley.

I’m sitting out in the RV in front of Burger King and am getting icy fingers.

I had an appointment for an IVIg last Thursday. It was a mess-up thanks to paperwork and pre-authorizations not getting done. I have another appointment this week in Tucson. I sure hope it works out!

I really need to get the RV professionally worked on since the check engine light has been coming on and sometimes it runs rough. Sigh…. Will we make it to Tucson and back? Here’s hoping!