Monday, March 20, 2017

What's Life Like for Us in an RV - Part 1

Wow, I guess it's about time for an update, eh?

Why is it so difficult for me sometimes to write blog posts? I need a blogger support group with tips and tricks on how to make it happen daily. Someone please interview me. What do you want to know?

A friend of mine kind of DID interview me, so I'm going to post some Q and A here about living in an RV after 5 months on the road. She actually asked me these questions over a month ago and because I'm SO organized and prompt, I'm just posting them now. Even though we'd talked about doing this then. Also because of these mad skills, some of my answers have changed. So I'm going to post the answer over a month ago and the answer updated now. To make is less confusing. (/sarcasm)

My friend, the interviewer, is M. I'll post her questions
bold and green. I'm E, and my answers, as ever, will be purple. Updates to current events will be in pink, because I love color. And now, on to the interview! J is my husband and K is my son.

M: I'd love to hear more about your RV life and its rhythms, how it works with J working, space, K, chronic condition, etc.

E: J hasn't started working again yet - he is still in decompression stage from the past 5 years of stress. I do think we've finally found a good rhythm. It's definitely a constant learning process.

J has a higher need for outside than K and I do - he can't just hang around home and chill as much as K and I like to. We have more of a need for down time.

I think we meet that need for J a bit by having him run all of the errands like grocery shopping and whatever else we need that we can't wait for Amazon to deliver. I pay attention to what needs doing and keep the lists and then let J know and he checks them off. I can still do things like laundry and dishes. He also takes Muffins out most of the time, although depending on where we are, I like to do that too. But he definitely does it in the mornings and after dark.

Update: J has started doing Tai Chi every morning at this new place in Arizona, and we've been making good use of the pool as well. This has made things much happier for him, having ways to move his body.

M: How does K like the change of lifestyle?

E: K seems to be doing fine with it really. He misses his BFF (who lived 4 hours away in Seattle), but they still game together online, just not as much. We got lucky: he recently got into this game called Overwatch, and his BFF plays but isn't all that into it.

I'm in an online group with BFFs mom called Unschooling Gamers, and often us parents will post for our kids that they are looking to play such and such a game. I posted that about Overwatch and several people answered the thread that their similarly aged kiddos were playing. We all exchanged Skype info and gamer tags for the game, the whole thread did.

K really wanted to play so that won over his shyness about new people, I helped him friend the whole group, and now they have this great group that they play with online. Two of the kids he has really clicked with are in AZ so their parents and I are making plans to meet. The other two he is really clicking with are in Indiana so we're making plans to go see them after we go to Missouri to see our families.

Update (and this is a BIG one!): We are now visiting said friends in AZ and all is going smashingly well (knock wood). While here, we learned that this family and ALL of the families of the other kids who play in this group are going to an Unschoolers Waterpark gathering in Ohio in May. We'd previously thought we couldn't manage to get across the country that fast, but this opportunity seemed too amazing to miss. Having his whole group of friends together IRL in one place for a weekend of fun?

We're going. I worked really hard on the schedule for like three days, and figured out how we could make it and go. And I did. It took a small miracle, but we're essentially driving across most of the country in 45 days, which is breakneck speed for our way of traveling.  But for this opportunity, we have to. Right? Plus the rooms at the resort (yes, resort) where the gathering is being held are just - this really will be a vacation for us. They're amazing. We're all looking forward to it, and hopefully I will find ways to keep my health intact while we travel. (I will).

M: How about personal space? Are you able to get that?

E: Finding (personal) space has been a struggle at times, but we're figuring it out. J doesn't always realize when he needs to take space, so we've talked about that. I'm trying to get him working out again in some way because it has always been an important part of him maintaining his sanity. He's self conscious about doing things outside but he's at least aware of his need now and is thinking about ways to meet it. He used do Tai Chi or work out at lunch daily when he was working in a central location.

Update: I know I said this above, but he's doing Tai Chi again, it's gotten much better.

We do have a back bedroom and a front room that are divided by a door and that helps. K and I are used to being together 24/7 so we don't really bother each other but J isn't as integrated into our mix so we often need time apart. And then there is always the whole outside, but sometimes a person needs indoor retreat space, so we try to meet that.

It's been better than I thought it would be in ways. We're being nicer to each other a lot of the time, but we still scrap in our usual way at other times. It seems to be tricky for us to occupy a space together so much of the time, but I really did think it would be worse than it's been. It's something we're finding ways to get around. And sometimes just being conscious of an issue leads to solutions.

J will take Muffins out when he needs a minute or go run an errand at the store. That seems to work well for now. Or one of us will retreat to the bedroom in back with the door closed. I do that a lot when I want to talk on the phone.

M: Do you meet many people?

E: We haven't met many people, but that's more on us and our tendency to hermit up rather than the lack of people or opportunities. RVers tend to be really friendly and helpful and available for company. Josh meets and chats with people a lot when he takes Muffins for walks or to the dog run area.

(As I wrote this in February) there were about a half dozen kids playing outside and K was in the RV on his computer playing online with his friends.

In a lot of ways, chronic illness taught us to be completely self-reliant and not look for social interaction. It's not like cohousing, where everyone is just outside your door. Most people stopped coming to us a long time ago when I got really sick. So we just got used to being by ourselves I think. Perhaps we will again adjust to being social, and being able to be social, as we travel.

M: How do you decide how long to stay in each place?

E: Amount of time depends on travel needs, etc. We like 2-3 week stretches in places because it gives us time to explore, do errands, have down time, be sick apparently.

When we were first on the road, we started from western Oregon in November, so we were essentially running away from the weather. We'd take 2, 3, 4 days in a place and keep  a close watch on when the weather would change. And we'd go a little further south each time.

Update: Then when the rains had taken over Northern California, we spent time in Southern California. We wanted to stay a lot longer in certain places than we did there, but availability of space and when is what dictated those stays. It was around the holidays, so space was really at a premium. We took what and when we could get. Once we were further down into Southern California our pace became a LOT more leisurely. We stayed in San Diego for about a month and a half.

Part of that was due to getting sick in San Diego (the air is polluted and the toxic overload caused both K and myself to have a big strep flare), which took a big chunk of time. You don't want to try to travel when you're sick. No. And then we wanted to see the things we went there to see. So we stayed a little longer.

Also in San Diego K's friend group seemed to solidify even more, and our plans changed. That was when we decided to fast track it across AZ and spend three weeks visiting K's friends. Plans were made with their parents and off we went! Man, was I glad to get out of that SoCal pollution and into some seriously clean air.

Also of note: I REALLY miss California citrus and the ocean, with all of my heart. This dry air and heat are...well, ups and downs, right? Things dry really quickly, like laundry hanging up. And no worries about mold! But then J gets daily nosebleeds and the heat is "unseasonably warm" for this time of year. So there's that. But the pool is great! And visiting friends is priceless. K is SO happy when he gets to be with them.

Back to deciding how long to stay somewhere. For this next stretch, we leave at the end of the month. (I don't even want to think about the withdrawl K is going to have.) Our schedule was determined by two things: 1) we need to be in this specific city in Ohio by Mid May; and 2) can we make a decent length stop in Missouri to have a good family visit.

Usually we like to drive no more than two hours on travel days. It's just how we roll. We like the locations, but we don't like the driving.  And we REALLY don't like the pack/unpack that we have to do for travel days. I mean we don't mind it at infrequent intervals, but we don't want to have to do it for several dozen days straight, you know? So if we have 1 or 2  one-night stays, that's okay. And we could maybe push the travel days to do a little more, you know, actual traveling. That would also give us a couple of 4 or 5 day intervals where we can see some things we want to see, like Roswell, NM (Area 51).

And I DID it. I was SO crazy proud of myself, because I actually managed us an 18 day stay in Missouri to see our families, and that's a HUGE win. So now we've tried several different ways of planning the route, and I'm SO much more confident with how it goes. Maybe I'll even do a post on how I plan!

When we have more time in a place like 3-4 weeks, we have a to-do list  of things like maintenance and decluttering. The RV gets cluttered really quickly (because we aren't minimalists and our needs change as we go and suss out more ways to use the space better). We're already eyeing places we want to clear out some things and lighten the load. Some of it is just stuff we thought we'd need and didn't, others are electronics we've had to replace and need to recycle, etc.

Update: We have since taken out the old perpendicular table and replaced it with a new bigger parallel one to use for my sewing space. And the fruit that used to sit on the table has now been put into a handy cart with drawers we got from IKEA. It's original intended use? Clothing. It's perfect for our fruit stash! Since this photo was taken we've also added a 5-tray Excalibur dehydrator we got on craigslist in Tucson for cheap!

We have done some decluttering of the bedroom and next want to tackle the living room. All in due time! Sometimes having fun and downtime takes precedence over tasks. To that end,
I have yet to sew on my table, but I have a list of projects waiting to be done when I do!

If this post created even more questions, or if you have questions about living in an RV and traveling the country, please let me know in the comments. That's why it's Part 1! I know there's lots more to answer!

Wednesday, January 11, 2017

LEGOLAND California

This one is a post I've been waiting to write for years, in a place we've been wanting to visit for years. LEGOLAND California is a dream come true for us. Our whole family are huge LEGO fans. An amusement park designed around our favorite toy? Yes please!

LEGOLAND did NOT disappoint!

Costco has this great deal for an annual pass for less than the price of a one day ticket. It covers LEGOLAND, the LEGOLAND water parks, and the Sea Life Aquarium. It does NOT cover parking, but still, even if you only go twice, it ends up being cheaper than buying tickets twice. 

For us, this is a great deal because we are not a family who can do a whole amusement park in one day. We need time to walk around and acclimate, time to stop and rest without feeling pressured to do more, and time to think about whether we're ready to go on that roller coaster. And our limit is about four hours, which is definitely not enough time to do a whole amusement park. So being able to return as much as the weather and open times allow is a good way for us to eventually get to everything we want to see at the park.

 LEGOLAND was SO much better laid out than Universal Studios was. It's much more spacious firstly, which makes it seem much less crowded for the most part. But also it has trees and lots of benches for sitting, and also lots of places that are full of LEGO to build and benches for the parents to sit while the kids build for awhile. And NOTHING is artifically scented!

Not only that, but there are LEGO sculptures everywhere to give everyone something to look at while you're walking or resting. It's loud in places but they're spread out so it isn't a nervous system overload - also most of the loud is happy children rather than noisy rides or music.

We loved every bit of it so much, and we didn't even go on a single ride. We DID go to the BIG shop because my son really wanted the LEGO Moana set. It wasn't in stock in the BIG Shop, but they called around the park to the other gift shops and found it at King's Marketplace in the Castle area, so across the park we went to get it. They'll send your purchases to the front for you to pick them up when you're ready to go so you don't have to carry them around all day.

Of course because the Castle was next to the Star Wars area, after going through the Enchanted Walk, we had to go see the Star Wars area. How could we not? So many fantastic miniature sets from the original movies. And the Death Star! And Darth Vader!

And then there's Miniland. A whole ares of scenes from famous places around the United States. My favorite scene was the UFO crash in Las Vegas with the Men in Black. I love that there was so much fun and humor in the details of the scenes. There was SO much to look at in each scene. I'm not sure if Santa IS an alien, or speaking to them, but it's a great touch.

We also went to the Sea Life Aquarium, but that's its own post because it was pretty darn cool for a small aquarium. We only ended up lasting about four hours, and I of course needed my wheelchair to do it, but I did NOT need my mask! And that was pretty amazing.

 Oddly, even after my family was worn out, I wanted to keep going, but I had been riding in the wheelchair after all. But the difference in my stamina without all the scented everything was just phenomenal. Thank you, LEGOLAND, for actually having breathable air! 


Monday, January 9, 2017

Universal Studios Hollywood - Spoonie Perspective

The good thing is that my son had a (mostly) good time the first time we went, particularly in the Simpsons and Minions areas. But it was super crowded, they do not ever ask people to make way for wheelchairs or other differently abled humans, they pump in scents everywhere (I could NOT take off my mask even outside). I didn't see it the first time we went because my husband dropped us off at the front, but the second time we went, I noticed this at the tollbooth for parking. In California (and I love this) Prop 65 requires anyone using toxic chemicals to post this warning. 

 Every shop smelled like "cake" (no food being sold in them though), and outside and inside everywhere else smelled like fabric softener. We didn't go into most of the shops or restaurants. I thought I was going to see the inside of Hogwarts, but all I got to see was all the ways Universal is scheming to take even more money from people. Because charging $119 per person per day isn't enough somehow. This place was a chronically ill human's nightmare. I'm glad my son had a good time, though. 

 I think if one really makes an effort to go on a less crowded day it would be slightly better. But according to Google, less crowded only happens if you get there at 8 AM, which we just weren't willing to try and do when it already makes for such a long day even being in the park. Also bear in mind that in a wheelchair I'm about crotch height to overyone else and it really does make it a lot worse for me. Even with my mask, the petrochemical scents overwhelm my nervous system and cause brain fog, anxiety and general overwhelm, not to mention physical symptoms like pain. 

We did go back a second time to try and get our money's worth out of the tickets. Having the wheelchair does bump you up in the lines for the rides - even if the wheelchair user doesn't go on the rides, members of their party can still go through the wheelchair part of the line and just wait at the exit for them, which makes it easier because not as much waiting around, which also drains energy resources. (Spoons). But trying to push a wheelchair through the crowds is rather brutal. ESPECIALLY over cobblestone. People don't necessarily move out of your way or let you through, and they will even do things like run in front of you if they see space. 

The first time we went, we made some rookie mistakes - partly because my nervous system was so overwhelmed, my brain forgot to tell my body it had needs other than "shut down", or "escape this nightmare". Among them, that were correctable the second time, were:

  1. Not checking the busy times on Google first. ApparentlyMondays (the first time we went) are a super busy time, but also so are any days around the holiday. So we were kind of SOL there. 
  2. Not having a hat with a visor. When the sun is high, it's brutal and shines in your eyes, making it unpleasant. They seem to know this and sell baseball hats and other hats with brims at every gift shop, but BYO is so much cheaper. Which we of course did the second time. 
  3. Staying too long. We just wanted to see so much, and I think for our first day we just stayed longer than was good. The second time we didn't stay as long, but we also didn't get to do but one ride. This was largely due to an accident (that's all you'll get from me on that -  everyone is fine) that cut our visit short (but the whole visit was still beyond overwhelming). 
  4. Not eating regularly enough. This is for me personally. I need an infusion of fruit and greens (lettuce, celery, whatever) every hour or hour and a half. I've posted about the 16 adrenal snacks before, and I REALLY need to be eating those on the regular. I only ate once in the 3-4 hours we were there, and it was not enough. I did better the second time, makind sure to eat the adrenal snack rather than just a piece of fruit. It makes a difference, believe me. 
  5. I also should have been drinking ALL the liquids I brought (lemon water) instead of practically forgetting I'd brought any. The second time I did way better on this. 
  6. Also, extra supplements like B12, which I did bring but forgot to use - because B12 gets depleted really quickly when the nervous system is under stress. The second time I literally set alarms on my phone for all of this and FOLLOWED THEM. If I am properly supported nutritionally, I do MUCH better. At home this is so much easier, of course. I need to learn how to do it outside of my home now. Bringing the food/drinks/supplements isn't enough, I have to actually ingest them. This is a learning process.
The scents aren't anything I can change, so I still very much needed to wear the mask to be there. Even my husband said that the shops "smelled like cake" when there was no cake anywhere, and the rest of the place "smelled like fabric softener" so even Muggles can smell this stuff around. I wish when they have the toxic chemical warning at the tollbooth that they would also have a list of what chemicals are used, so you know what you're getting into. Had I had my wits about me, I'd have asked. I wonder if they are required to have a list? If you know, please comment and tell me.

Today I'm okay again with the help of a lot of cleansing foods and supplemental support. I don't want to gloss over what hapened, because it was a big deal, and I SO wish Universal would have "sensory sensitive days" without all of the extra sensory input or scents, because everything was VERY LOUD (one might even do well to have a pair of earplugs to help filter it out, too). It  wasn't the crowds so much as the loud music playing everywhere  - the noise of the park itself - and there was nowhere to go to get away from it. Or the scents.

I am not at all used to going out into crowds anymore, having been homebound for the past couple of years, and at the most going to a quiet grocery store with almost no people in it, or a Target, which is about as busy a situation as I've been in. So that bears mentioning as well. Someone more accustomed to crowds might fare better.

Saturday, January 7, 2017

that time I got stung by a bee at the beach and I didn't die

A few days ago we landed in our new spot in Oceanside, California. The RV park we're staying in is a very short walk from the beach - only four minutes! And it's quite a lovely walk at that. There is a little inlet that connects to the ocean, and the ducks, gulls and other assorted birds and squirrels like to gather there. On the other side is a small park with a playground, complete with swings (our favorite). Then you walk past what I think is a cafe, cross the street, and you're on the beach watching the ocean. It's so cool! And this beach is great - fine, powdery sand plus random rocks strewn about, just ready to be thrown back in. My son and husband LOVE throwing rocks into the water.

So of course we had to go there and throw rocks in the water and watch the sunset, because we were there at the perfect time of day. We took off our shoes by the bigger rocks that you could sit on, and then got up to go walk to the water. Only I felt something soft under my foot. I was trying to rub it off and then felt a stabbing pain through my foot, and I wondered if it was a splinter, or....then I felt the unmistakable feeling of venom spreading through my foot - it was a sting. What had I stepped on?

I didn't see what stung me, just the stinger that was pulled from the bottom of my foot. It looked like a bee stinger, and I am convinced that is what it was. I've seen enough bee stingers to know what they look like. I know that, it being the beach, there is a possibility of jellyfish or urchins or any number of things, but this didn't look at all like it came from the sea. And a search on the internet revealed that it's a pretty common place for bees to die, so it's definitely not unheard of.

It HURT. So much so that I had to tell my family to go away from me because I couldn't process anything but the pain for about 30 minutes. They kept coming to check on me and I was just like, "Go throw rocks in the ocean, I just need a minute here." That whole, "I couldn't see straight," thing that people say? Well, I actually couldn't see straight.

It bears mentioning here that I am supposed to be allergic to bee stings - I have the blood tests and an Epi Pen to prove it. I did NOT have the Epi with me, however, and as I sat there just trying to see through the pain, and asking the angels and the Universe to please take the pain, I was also very aware that I would either come out of this or die right there on the beach.
 *spoiler alert* I didn't die. I didn't even react, other than the blinding pain and not being able to walk. the sting was on the ball of my foot, so it took a couple of days, but also, it only took a couple of days for it to completely return to normal. When we got back to the RV, I soaked it in baking soda first, since we were out of Epsom Salts. I don't know how that happened, but whatever, my husband went and got more.
We also made a paste of baking soda and apple cider vinegar and put it on my foot for about a half hour, followed by some lavendar essential oil. The pain was still throbbing, but somehow not only did I fall asleep, but I slept fairly well. The next day, the pain was replaced by itching - it was beginning to heal! It was still insanely tender to the touch, so I just did another epsom salt foot bath and tried not to itch it - until I realized that the towel I used to dry my foot also doubled as a scratching towel that I could run back and forth under my foot. Then it became my best friend for the rest of the day, because the itching was as strong as the pain had been the first day.
Day three still a bit of itching, but the swelling seemed to be going down and I could walk again, even pressing on my foot. Honestly I was shocked - firstly, I'm supposed to be anaphylactic. And I wasn't. Secondly, the way it hurt I thought it could be days - but it wasn't. And I attribute that to the healing foods and supplements I'm eating. My body is healing, so it's getting more and more able to process things that happen - like a bee sting. Like I could before I got so sick.
I decided to blog about it because it meant so much to me to see that happen - I was already eating foods I thought I'd never eat again, and I have been feeling so much healthier and more capable. But I had a blood test for this, and an Epi Pen. I didn't think that my body would process this this quickly or well. The whole thing blew my mind - how quickly it healed, and also, how I didn't die.

An amazing surprise indeed. Oh, and lest you worry - I'm still keeping the Epi Pen - I'm not going to get cocky. It's one of those things that is way better to have than not to have, just in case. But WOW that I didn't need it. By the way, I took all of these photos as this process happened. We just wanted to see the sunset at the beach!

Monday, December 26, 2016

Pismo Beach

Pismo Beach  - I'd call it a must stop if you're traveling through California anywhere nearby. It's on the edge of an adorable little beach town that I didn't have the stamina to explore. I'm still healing, and my energy gets used in only the most important places - like on the sand and in the water. Not IN the water, but my feet in the water.

But I DID have the stamina to spend a couple of hours with my family on the beach, letting the gentle waves caress our feet, watching Muffins running in and out of the water, laughing and allowing the healing that the ocean and sand provide. A true gift. 

Muffins loves the water and the ocean so much that as soon as she smelled the sea air she started crying to get out of the car -  while we were still moving and nowhere near the parking lot. She was ready to go!

Muffins, my husband and my son play a game where they chase the waves as they wash out, then run away as they wash in. Muffins usually doesn't go in beyond the depth of her legs, but this time she felt bold and went in all the way past her belly, to
where the water was halfway up her sides before she decided to run back onto land. It was hilarious to watch, and she had us laughing SO hard.

She was also particularly interested in those birds. 

Laughing! Now even there is something I had done so rarely in my life with chronic illness, if ever. It's not easy to laugh when a person is in so much pain that it's all they can do to breathe, or when they're so exhausted that they can't see straight.

And here I was, laughing joyfully. Happythankyoumoreplease! This day, this beach, so much healing, so much life. 

So much life! The bird life was abundant at the beach. I don't know them all but we saw plovers, gulls, pigeons, pelicans, hawks....and those are just the ones I was able to recognize.

I think these birds are western snowy plovers. I'm no bird expert but I sure am fascinated by them. Birds have such grace and personality, and they are so funny to watch sometimes. 

These little guys would run in as the tide washed out and start eating something - brine shrimp or brine fly larvae perhaps. Something too small for us to see, but clearly a delicious treat for them. It was like a meditation watching them over and over as the tide washed in and out.

The pier against the sky. What contrast! There were so many beautiful visuals here. And apparently the water gets pretty high at times, we just lucked out with a lower tide day.

The water made these ripples in the sand. The sand itself was so fine it felt velvety on our feet rather than sand-papery. This beach just made me want to live here.

After a couple of hours (on my feet the whole time, go me!) we decided it was time to go, so I climbed the stiars to the pier to sit on the bench with Muffins while my guys enjoyed swinging on the beach.

So to recap: I spent almost two hole hours on my feet in the sand and water, and I don't remember it hurting until the end - whoa! That is unheard of for me. Then I walked UP THE STAIRS of the pier to sit on a bench to recover a bit - pretty impressive after already being on my feet all that time!

 Now, I'm not saying that it will only get better every day from here on in, because let's face it - flares happen. My body still has a great deal of healing to do from the onslaught of viruses it's been carrying around all its life, and the damage they have done. My liver has a lot of cleansing and healing to do yet. And that's okay with me. 

I know I AM healing now, finally, after years of seeking answers. I see the difference and how each outing shows me that I AM moving forward, I do keep improving, and sometimes I am blown away at what I can do now. Things I wasn't sure I'd ever be able to do again. It feels amazing.Talking with a dear friend tonight I realized that when I was first on this healing path, trying the Medical Medium recommendations, if a flare would happen sometimes I'd get that panicky feeling like, "No, it's not working, it's all coming back, nothing can heal this." It would terrify me to have a flare of my symptoms or feel more pain or even have a day of grumpiness from not enough sleep.

But I'm noticing now that it doesn't scare me anymore, because it's a part of the process, and I really KNOW that I am healing, and if I just do the things I need to do to keep that going, it will keep happening. And that's pretty amazing in and of itself.

I had been watching the hawks soaring over the beach, just gliding, circling, flowing so gracefully back and forth. I have been thrilled be the sheer number of raptors I've seen in the skies everywhere we've been in California - I think hawk must be one of my spirit animals, because I have been so completely drawn to them these last few years. I really wanted to get a good photo, but my lens isn't very long, and I didn't know if I could. 

As we were leaving, however, the hawk must have heard my wishes, because it literally flew right above our heads, over the pier we were walking down, and I took as many photos as my camera would allow as it flew over. I could have cried with joy. So close! I was actually calling out thanks to the hawk as it flew overhead and I was clicking away.

I'm not exactly sure the type of hawk - I tried to look it up and maybe it's a 
Ferruginous Hawk? If you know more about birds than I do (likely), and know what kind this is, please educate me, I really want to know!

We even remembered to take a family selfie.