Cross Country Trip to meet other Phoenix Rising community members!!

January 24, 2013

by Karen Luoto

I still cannot believe it…

Jen, Karen and Adin sharing a moment of "true friendship".

Jen, Karen and Adin sharing a moment of “true friendship”.

I NEED to tell you about a cross country trip I recently took with the emotional and logistic help of other ME/CFS’ers from the community. 

Although I am in severe pain now, feeling as though every bone in my body is breaking with every step, the tendons and ligaments have all torn away from every joint, the brain is detached completely and my eyes cannot seem to focus on a single word at the same time, I AM HAPPY!

I recently traveled a 4400+ mile trip from Jacksonville, FL to San Antonio, TX to Albuquerque, NM back to San Antonio and then back to Jacksonville. I cannot believe I did it… and I am STILL ALIVE.  (I think)

Leaving Jacksonville

I have met several “friends” on the forums and wanted to help someone, somehow, when I was asked if there was any way to help someone get from San Antonio to Albuquerque to look for a place to live due to their physical climate needs.

I have never been to either of those places and always wanted to go…you know, the bucket list we abandoned when we became ill… How would this ever happen now? How would I ever be able to physically make the trip? How would I now afford such a thing?

Then, I was offered a place to stay in San Antonio with another ME/CFS person, his wife (who has now contracted ME/CFS) and help with the logistics of the trip. How could I refuse? Oh, yes, minor point, I was completely bedridden a couple years back.. so how in the world would this be possible now?

I closed my eyes and said, “It will be worth the price you will pay” and just went on “Hope”. I truly don’t know how I did it and wouldn’t expect to be able to do it again…at least not until my body heals a bit and who knows how long that will take? Another 6 years? A lifetime? Who knows? But, enough of the trials we all face, let me tell you what happened.

I left Jacksonville, thanks to my son and caretaker, who said, “You need to do this for yourself and for all the people who are really ill.” My daughter also gave me her blessings, saying that, although she was concerned, she wanted me to live like I used to…

San Antonio

I arrived in San Antonio and met Adin, who is the one of the incredible volunteers at Phoenix Rising, and his wife, Jennifer, who is also a volunteer and an incredible woman, and their two lovely young children.

A brief pause from the illness to play with his children. (It didn't last long.)

A brief pause from the illness to play with his children. (It didn’t last long.)

They were then living with her parents due to some unforeseen circumstances and needed to move to a better climate due to the issues Adin is having with the climate in San Antonio. And, yes, after corresponding via the Internet for almost a year, when I arrived, the tears flowed, the hugs came (with all the pain), but the ability to meet someone from the forums, face to face, and know that they know and understand was like a lightning bolt of energy infused with love and caring and everything we dream of every day… day after day…

 

Of course, I then slept with no one asking me why or what is your problem…I just slept and when I was OK again, Adin, Jen and I left for Albuquerque to look at houses and for me to see the sights.

Albuquerque

It was something like a dream from then on. I met other ME/CFS’ers in Albuquerque that I had only known by their forum names, but what a revelation. Like the stars opened up and shined on me. I cannot express the feelings I had when meeting any one of them. I felt as though I had been swept up by some unknown force that was holding me together and keeping me well enough to walk and talk and visit people and places I had only dreamt about.

I met Sushi, who most of you know as a very knowledgeable and helpful community member, and who I had the pleasure of chatting with on the forums. I met Claudia who is an advocate for ME/CFS and has worked diligently to organize fundraising events for our cause.

Adin and Jen took me to the tops of mountains where the caulderon is only 5 miles below our feet. While I got hit with a snowball (Thanks, Adin) I was told the hot springs that emerged a mile below the spot we were standing on was heated sulphur water and too hot to touch unless it was allowed to merge with the snow run-offs and bathed in special hot “tubs” that were part of the natural order of things.

Petroglyph National Park

Standing in front of the sign for Petroglyph National Park.

Standing in front of the sign for Petroglyph National Park.

 Again I slept (our kind of sleep), before attempting another “tourist destination”; Petroglyph National Park, a well known site for Ancient Indian tribes where they describe, on scratched rock, their visions, their world and their way of life. Sushi and I climbed a “mountain of volcanic rock” gingerly picking our way along a “semi-paved” path. We didn’t know if we would be able to make it to the top and see the “lookout”, but painstakingly, and with several oxygen stabilizing stops, made it to the top to rejoice with unknown fervor at our final destination. We could look out and see all of Albuquerque and the mountain ranges that surround the city. We cried at the unknown force that allowed us this pleasure.

Actual Petroglyph from the park.

Actual Petroglyph from the park.

 

You cannot see the walking sticks but they are there.

You cannot see the walking sticks but they are there.

 

and Sushi kept saying step back a bit for a better picture....

and Sushi kept saying step back a bit for a better picture….

 

A disability parking permit, hiking sticks and a heart monitor....

A disability parking permit, hiking sticks and a heart monitor….

Oh, yes, in case you wondered how we did it… We needed all the tools we had just to have enough energy… (The ranger said this was the shortest loop trail and should take about 30 minutes. It took us about 2 hours…)

We then slowly descended back to the truck to try another stop at the dormant volcanoes that lie a bit west of where we were. While we drove to the next destination, a hot air balloon rose from the horizon and we rejoiced at seeing it. How lovely to see something outdoors and in clear view.

 

Volcanoes

We made it to the site of the volcanoes, but only 10 minutes before they closed the gate, and didn’t have the stamina or ability, at that point, for the walk to the volcano. But we took pictures of the vibrant sunset that was closing around us.

The path to the volcano

The path to the volcano

 

We then met up with Adin, Jen, Claudia and her husband and ate dinner at a lovely Greek restaurant. It was soul-wrenching for me to know this may never happen again in my lifetime, but for one instant in time, I was there, I was with people that knew me and my illness even if they had never met me before. They just knew, we all knew and we all understood.

I only hope my short term memory loss never blocks that image of us all sharing our trials and tribulations, our hopes and dreams, our wants and desires to help the whole ME/CFS community to come together, to speak as one voice, to demand respect, to find ways to bring us together, to find help for our illness both in the short term and long term and most of all to find what we need – “A CURE”.

San Antonio River

I then returned to San Antonio with Adin and Jen and, again after sleeping for a few days, we all traveled to the “Riverwalk” with the help of their dear friend, Leon. I could drive no more, so he took the wheel. We walked or stumbled (or whatever it’s called) down the sidewalk next to the beautiful San Antonio River to stop at shops and admire the Christmas lights, the riverboats and all the goings-on of normal people. I felt almost normal… although I knew it wouldn’t last.

We ate at a “British Pub” along the Riverbank, like real people do. We watched the passers-by, knowing that any one of them could have the same fate befall them at any time, unknowingly halting their very existence and changing their lives forever. I felt like I was in a dream world where this illness couldn’t stop me, where no worries lie, where life is but a dream and all you have to do is follow the path. We ate “Scottish Eggs” and loaded baked potato halves and quesadillas like we had no care in the world.

Last Stop

Then, as our illness dictates, Adin and Jen fell ill and had to stop and sleep. I wanted to see the Alamo, just one more stop, please, oh please, let it be. I traveled by myself to see the place where the words ring loud and strong, “Give me liberty or give me death”. I thought, what a horrible illness this is, that I feel the same way when I’m in my bed unable to lift my arms or legs, unable to feed myself, unable to bathe. And I am only fighting for myself, not for a country or a universal truth, but I am still fighting for all of us who suffer.

My last stop before I left was to the Pueblo Indian Cultural Center, where the Native Americans Indians are trying to teach the rest of the world about their culture, their plight and their ways of living. I pondered, how beautiful, how wonderful that people are interested in understanding, if only that were true for us, the ones with the invisible illness. We have no explicit culture, no explicit ways of living, no uniform look or nationality, we only have this illness that draws us together.

Yet everywhere I went, everyone I met that has ME/CFS or has a loved one with ME/CFS has compassion for each other that extends beyond natural boundaries, beyond nationalities, beyond borders or countries. We have an understanding and respect for each other that transcends all the obvious trappings – and maybe, just maybe, that is worth more than all the other limited, defined physical laws of this world and we can both cry and rejoice together when one of us can make a trip cross country to search and find another one of us.

I thank all the Phoenix Rising members for being here,

K2 for Hope

(Karen Luoto)

 

Support Phoenix Rising

 

 

55 comments

{ 55 comments… read them below or add one }

Dreambirdie January 24, 2013 at 11:26 am

I was not able to read the whole article yet… but based on what I did read, I just want to say: YAY! what an adventure! and… I wish I could do that!

Thanks for sharing your story Karen. :hug: I love the photos. :hug:

K2 for Hope January 24, 2013 at 1:28 pm

Dreambirdie:

LOL, you should have seen how long it took me to write it! Just like when you are at the Dr's office, just look at the pics. :)

I was asked to post something about the trip (with pics of course) by some of the members as it is so seldom any of us gets to do something like that. And who knows when it will happen again :(

One never knows with this illness. But, I wanted to share the adventure as I enjoy reading and seeing pics when anyone of us is able to do or go somewhere. It gives me courage to keep fighting and not get so upset when things are not going so well.

:hug: – back to you,
Karen

K2 for Hope January 24, 2013 at 2:08 pm

If you scroll down to the Petroglyph pics where I am standing at the edge of the "lookout", notice how close I am to the edge as Sushi says "Step back a bit. It will be a really good shot!"

Sushi January 24, 2013 at 2:11 pm

K2 for Hope

Great write-up! So glad that you shared the story of Phoenix Rising members actually discovering that we exist outside of cyberspace, have personalities, care for each other and that there is the possibility of occasionally sharing adventures together–even heavily "accommodated" adventures!

Loved that you included pictures! More proof that we actually did this!

Sushi

Dreambirdie January 24, 2013 at 2:14 pm

Hi Karen–AT this point I have finished the article. Well done. :thumbsup:

I wish I was there. I haven't taken a vacation out of state since 1984. :(

K2 for Hope January 24, 2013 at 2:24 pm


Sushi

K2 for Hope

Great write-up! So glad that you shared the story of Phoenix Rising members actually discovering that we exist outside of cyberspace, have personalities, care for each other and that there is the possibility of occasionally sharing adventures together–even heavily "accommodated" adventures!

Loved that you included pictures! More proof that we actually did this!

Sushi

Sushi,

Thanks for helping me actually get there! (Even with all the U-turns and lost directions…:D)

I wanted this to be a "feel good" article as sometimes I do feel like I'm just an invisible person with an avatar on the forum…

I only hope that more of us can do more of this! :)

Karen

K2 for Hope January 24, 2013 at 2:28 pm


Dreambirdie

I wish I was there. I haven't taken a vacation out of state since 1984. :(

Oh, Dreambirdie, I know exactly how you feel. That was one of the reasons for publishing this.

Sometimes, I wish we all lived in a "little" country somewhere…. with Dr's and caretakers and friends where we could at least get together once in a while – even just for dinner, so we could see each other's faces with that understanding that only those of us who are truly ill understand and know about.

WillowJ January 24, 2013 at 3:02 pm

thanks so much for sharing. this is amazing.

I do think it would be really nice if we had a teleporter we could use to have visits like this, even if for some of us it would be more like having a cup of tea or watching movies, rather than seeing the sights

K2 for Hope January 24, 2013 at 3:12 pm


WillowJ

thanks so much for sharing. this is amazing.

I do think it would be really nice if we had a teleporter we could use to have visits like this, even if for some of us it would be more like having a cup of tea or watching movies, rather than seeing the sights

WillowJ:

A teleporter? ;) Yikes, would we get some kind of notice???? :eek:

WillowJ January 24, 2013 at 3:16 pm


K2 for Hope

WillowJ:

A teleporter? ;) Yikes, would we get some kind of notice???? :eek:

yes, it would be entirely directed by the users! :)

WillowJ January 24, 2013 at 3:17 pm

do you think I read too much science fiction? :whistle:

Sushi January 24, 2013 at 3:20 pm


WillowJ

thanks so much for sharing. this is amazing.

I do think it would be really nice if we had a teleporter we could use to have visits like this, even if for some of us it would be more like having a cup of tea or watching movies, rather than seeing the sights

Second Life has a teleporter but, alas, it only teleports Avatars!

But if you think about the stats on this illness, it would seem that about 1 in 300 have this illness and some of them are bound to be your neighbors. I know of 5 in my area (most on this forum) and we do communicate and even occasionally see each other!

Sushi

Sushi January 24, 2013 at 3:22 pm


WillowJ

do you think I read too much science fiction? :whistle:

Karen, Adin and Jen used a teleporter though a very old fashioned kind with 4 wheels and a big engine!

Sushi

K2 for Hope January 24, 2013 at 4:10 pm


WillowJ

do you think I read too much science fiction? :whistle:

Willow,

I thought this whole illness was science fiction. (at least I used to think so…. :ill: )

I mean where else can you go to do less???? I'm almost sure we live in another world… :alien:

Karen

GcMAF Australia January 24, 2013 at 4:51 pm

wow a dream story come true
I wish some one would port our TV (teleport) to Pluto
I feel more hopeful in Australia, and that the Lyme people are leading a charge of the cavalry.

K2 for Hope January 24, 2013 at 5:42 pm

OK, for those that asked… :rolleyes: here are some of the rest of the pics. You need to open the first one to see the caption and then just scroll to the right to go through them.

http://forums.phoenixrising.me/index.php?useralbums/cross-country-trip-to-the-southwest.104/view

Dreambirdie January 24, 2013 at 6:09 pm

Great to see more pics. Thank you Karen!

K2 for Hope January 24, 2013 at 7:09 pm


Dreambirdie

Great to see more pics. Thank you Karen!

Easier for those of us who are not "scientists" and hopefully, will give some hope to all!

GcMAF Australia January 24, 2013 at 9:06 pm


K2 for Hope

Dreambirdie:

LOL, you should have seen how long it took me to write it! Just like when you are at the Dr's office, just look at the pics. :)

I was asked to post something about the trip (with pics of course) by some of the members as it is so seldom any of us gets to do something like that. And who knows when it will happen again :(

One never knows with this illness. But, I wanted to share the adventure as I enjoy reading and seeing pics when anyone of us is able to do or go somewhere. It gives me courage to keep fighting and not get so upset when things are not going so well.

:hug: – back to you,
Karen

K2 did you pick up some great snake stories??;)
do they have snakes there??

K2 for Hope January 24, 2013 at 9:09 pm


GcMAF Australia

K2 did you pick up some great snake stories??;)
do they have snakes there??

Uh, I didn't try to find them…. Guess they just "hissed" by me… :lol:

GcMAF Australia January 24, 2013 at 9:53 pm


K2 for Hope

Uh, I didn't try to find them…. Guess they just "hissed" by me… :lol:

Rats Ha ha ha

Sushi January 24, 2013 at 10:15 pm

[​IMG]

K2, guess who is looking for you!

Little Bluestem January 25, 2013 at 1:38 am

You all look so healthy and happy in the photos – which is exactly the problem. Some of the people you saw in San Antonio may have already had ME.

It takes us to understand us. It is so good to read about some of us getting together. No one else would include several days of sleep on a trip itinerary.

GcMAF Australia January 25, 2013 at 1:43 am


Sushi

[​IMG]

K2, guess who is looking for you!

Gave me a fright when i opened this post

taniaaust1 January 25, 2013 at 2:11 am

Sounds fun. :)

If anyone ever wants to come and visit Australia and do the couch surfing thing.. im open to having someone at my place for a while and would love to go to Kangaroo Island (one of my favourite places) again with someone.

Hell...Hath...No...Fury.. January 25, 2013 at 3:53 am

I love hearing about things like this, what a fab trip and well done! I did a similar thing 10 years ago and met ME folks in various parts.of australia and new zealand. It was amazing to travel to the opposite side of the planet and meet up with our own kind. Watch out tania as i plan to do it again one day ;-) it was so great reading this post. Well done!

K2 for Hope January 25, 2013 at 9:20 am

This was meant to uplift spirits as I believe Adin is now on oxygen 24/7 and wouldn't be able to go through something like this right now.

Little Bluestem

You all look so healthy and happy in the photos – which is exactly the problem. Some of the people you saw in San Antonio may have already had ME.

It takes us to understand us. It is so good to read about some of us getting together. No one else would include several days of sleep on a trip itinerary.

Little Bluestem,

You are correct. We LOOK healthy and happy, but what would have been a 2 week trip turned into almost a month due to the need of constantly having to check up on malaise. We all had to take lots of "down" time to achieve it and I don't know how normal people, who don't understand that, would feel about it. "Oh, I have to sleep and rest for a couple days before I can move again, OK?" :cautious:

And, I think Adin will cry now when he sees the pic of him playing with the kids. It didn't last long (maybe 10 mins?) and I think he slept for a couple hours afterwards. I know his heart rate jumped way too high.

taniaaust1

Sounds fun. :)

If anyone ever wants to come and visit Australia and do the couch surfing thing.. im open to having someone at my place for a while and would love to go to Kangaroo Island (one of my favourite places) again with someone.

Tania,

Australia has ALWAYS been on my "bucket list", but I really don't know how I would do that. This trip was kind of a "test" to see what the effects were going to be afterwards. But, when I win the lottery, Australia will be back on, and couch surfing would definitely be on the itinerary. Maybe Kangaroo Island could be done REAL SLOWLY…. :sluggish:

Hell…Hath…No…Fury..

I love hearing about things like this, what a fab trip and well done! I did a similar thing 10 years ago and met ME folks in various parts.of australia and new zealand. It was amazing to travel to the opposite side of the planet and meet up with our own kind. Watch out tania as i plan to do it again one day ;-) it was so great reading this post. Well done!

Tania, watch out! You may find Hell…Hath…No…Fury at your doorstep one day! (Ask for a week's notice, so you can get dressed!)

Sushi

[​IMG]

K2, guess who is looking for you!

Sushi, I am really glad you didn't show me this while we were there…. It may have scared me out of coming!

Sushi January 25, 2013 at 2:05 pm


K2 for Hope

Sushi, I am really glad you didn't show me this while we were there…. It may have scared me out of coming!

You notice I was wearing boots! ;)

Sushi

Simon January 25, 2013 at 5:24 pm

Great piece, Karen, thank you. Always good to hear aboutpeople with this illness managing to haveadventuresdespite everything, even better when you can meet up with others on this forum. There are a lot of people here I would like to meet up with.

taniaaust1 January 25, 2013 at 5:31 pm


K2 for Hope

] Australia has ALWAYS been on my "bucket list", but I really don't know how I would do that. This trip was kind of a "test" to see what the effects were going to be afterwards. But, when I win the lottery, Australia will be back on, and couch surfing would definitely be on the itinerary. Maybe Kangaroo Island could be done REAL SLOWLY…. :sluggish:

Anything done with me would be done real slowly. I'd probably worry about holding the other person up. i dont require all that much recovery time with things..usually resting till the next day will do the trick (thou I certainly understand days to recover from something from when I used to be sicker)..but with me currently.. only small amounts can be ever done at once (lots of rest breaks, if walking from one end of a big shopping centre to another.. I often require to sit and rest on that walk.. had to do that yesterday) or I get "extreme" symptoms flare (cant then stand at all) and I know none of you would be able to carry me!!! so I'd have to be careful.

Laying on the beach.. or just tenting in one place watching wildlife and enjoying natural scenery.. are the things which I most easily could do. No mountain climbing lol. I'd like to go on one of those big cruises one day.. umm maybe that is something a group of ME/CFSers could do together easily (once we get to the boat!) ? That would be so fun. Anyone up to saving and one day going on a cruise with a group of other ME/CFS people?

Tania, watch out! You may find Hell…Hath…No…Fury at your doorstep one day! (Ask for a week's notice, so you can get dressed!)

lol

Tammy January 25, 2013 at 7:16 pm

Hi Karen……….great that you could manage this………..wish I would have known………..I would have loved to meet other cfsers from PR…………I could have met you guys at the petroglyphs……….just up the road from me! I wonder……has anyone thought of having a meeting place once a year…..where members who think they can do it……meet up? I know it would be difficult but I for one would push through……..just to get to meet some other comrads…..it would be worth the push for me .

GcMAF Australia January 25, 2013 at 7:38 pm

i think you may have started something

Little Bluestem January 25, 2013 at 11:17 pm


taniaaust1

I'd like to go on one of those big cruises one day.. umm maybe that is something a group of ME/CFSers could do together easily (once we get to the boat!) ? That would be so fun. Anyone up to saving and one day going on a cruise with a group of other ME/CFS people?

I have always wanted to go on an Alaskan cruise. A lot of the wildlife watching and glacier viewing is done from the boat, so it would be good for pwME.

In principle, I would love to do this.In reality I don't know when I would have the money/time/energy to carry it out. Right now I am saving my money in hopes that a reasonably effective treatment will come along.

One of the worst things about being single is traveling. You have to pay almost as much (or sometimes as much) for a room as a couple. You have no one to share a meal with (this would not apply on a cruise).

GcMAF Australia January 25, 2013 at 11:26 pm


Little Bluestem

I have always wanted to go on an Alaskan cruise. A lot of the wildlife watching and glacier viewing is done from the boat, so it would be good for pwME.

In principle, I would love to do this.In reality I don't know when I would have the money/time/energy to carry it out. Right now I am saving my money in hopes that a reasonably effective treatment will come along.

One of the worst things about being single is traveling. You have to pay almost as much (or sometimes as much) for a room as a couple. You have no one to share a meal with (this would not apply on a cruise).

Indeed

Little Bluestem January 25, 2013 at 11:34 pm


Tammy

I wonder……has anyone thought of having a meeting place once a year…..where members who think they can do it……meet up? I know it would be difficult but I for one would push through……..just to get to meet some other comrads…..it would be worth the push for me .

I hadn't thought of it, but I am really liking the idea. If you arrive late in the day at some places, they will give you a ticket for the next day free. Actually, I have only done this at a couple of places, but I wonder how many more would do so if one asked. This would allow us to spread our visit to a place over two days, a short time each day, without paying two admission fees.

I think some state and national parks have cabins at reasonable rates. We could go to a park and just hang out.

I would really love to do a spa, but don't think I could afford that now. I did a couple when I was still working. Both had reasonable rates, as spas go, but both have renovated, one twice, and are more expensive, and probably less pleasant, than when I was there.

WillowJ January 25, 2013 at 11:38 pm

If one doesn't particularly care when one sails and can go on short notice, cruises can be surprisingly affordable compared to other sorts of trips. The thing to watch for us would be the difficulty in boarding and de-boarding (a lot of waiting and not necessarily a good place to sit).
http://vacationstogo.com/(may require free registration to see deals, but is a reputable site)

glenp would be interested in this discussion

ggingues January 26, 2013 at 12:25 am


Tammy

Hi Karen……….great that you could manage this………..wish I would have known………..I would have loved to meet other cfsers from PR…………I could have met you guys at the petroglyphs……….just up the road from me! I wonder……has anyone thought of having a meeting place once a year…..where members who think they can do it……meet up? I know it would be difficult but I for one would push through……..just to get to meet some other comrads…..it would be worth the push for me .

I like this idea also, not sure how many in my area would be able to meet though. Perhaps we/I should start a thread on it?

GG

adin January 26, 2013 at 12:39 am

Karen — thanks for the incredible writeup! It was beyond awesome to finally meet so many other ME/CFS'ers. Truly friends for life!

Now we just need to get everyone else to start their own "regional" meetups!

Tammy — how long have you been in ABQ? I've been really shocked at how many other community members are in central NM, I thought I was completely alone back in 2003 & it certainly seemed like I had to 'train' all the local doctors (old St Joeseph's)!

I hope Sushi is up for more local hangouts, she's always been bursting with knowledge and insight, I look forward to every minute hearing one of her stories or news nuggets!

How many other lights are around our community, just waiting to be heard and appreciated?!

Sushi January 26, 2013 at 12:48 am

Tammy — next time for sure! adin and Jen (Devi75) introduced me to Albuquerque in a new way. All I'd seen in the couple years I've been here are grocery stores and doctors offices! Never even knew about volcanoes on my doorstep!

Sushi

taniaaust1 January 26, 2013 at 4:35 am


Tammy

I wonder……has anyone thought of having a meeting place once a year…..where members who think they can do it……meet up? I know it would be difficult but I for one would push through……..just to get to meet some other comrads…..it would be worth the push for me .

Ive tried in the past to get others to do this..but havent been able to get anyone interested in doing that here (Australia).
..

I have in the past got to meet another from the not crazy CFS website, it was great and we both had a nice time chatting outside a cafe. We met up after she had a doctors appointment 30mins drive from where I lived (what was a 2-3hr drive for her to get to that CFS specialist..she stayed the night with her friends in the city so she could get to her specialist).

adin January 26, 2013 at 10:48 am


Sushi

Tammy — next time for sure! adin and Jen introduced me to Albuquerque in a new way. All I'd seen in the couple years I've been here are grocery stores and doctors offices! Never even knew about volcanoes on my doorstep!

Sushi

Still lots more to see around there that can be done in bite size increments! from fossil hunting by Socorro & touring the VLA to hanging out in Madrid, the Caldera national preserve, ten thousand waves, pagosa hot springs, etc… ! oh, btw, Jen is Devi75

Tammy January 26, 2013 at 11:19 am

adin…………….Hi Aden……….you asked how long I've been in Albuquerque…….I am actually South of you in Alamogordo…………the petroglyphs I thought you guys were talking about is just North from me…….not far. Do you guys have a support group in Albuquerque?

Sushi January 26, 2013 at 1:19 pm


Tammy

adin…………….Hi Aden……….you asked how long I've been in Albuquerque…….I am actually South of you in Alamogordo…………the petroglyphs I thought you guys were talking about is just North from me…….not far. Do you guys have a support group in Albuquerque?

Tammy, adin, Devi75

We were at the Petroglyph National Park, right on the edge of Albuquerque. When we get a couple more in Albuquerque, maybe we all could meet sometimes. I know of 5 here other than myself and while we communicate regularly it is mostly by phone and electronically as we are scattered around the city and to find a time when everyone is feeling well enough to meet is more difficult than herding cats.

When Adin, Jen and Karen came it was all spur of the minute and the cats were far flung in their dens (do cats have dens?). Next time we can be better organized (maybe? :confused:) and get more of us together.

Sushi

adin January 26, 2013 at 1:25 pm


Tammy

adin…………….Hi Aden……….you asked how long I've been in Albuquerque…….I am actually South of you in Alamogordo…………the petroglyphs I thought you guys were talking about is just North from me…….not far. Do you guys have a support group in Albuquerque?

Tammy we used to live in Albuquerque and are currently attempting to move back—there are several ME/CFS'ers currently in Albuquerque that talk & meet every now and again. You probably want to PM Sushi for more info on everyone in ABQ. Fingers crossed that we'll be there soon. (hopefully we can find a place within the next couple of weeks…we've pretty much exhausted available options in Tijeras/Sandia Crest)

Sushi January 26, 2013 at 1:30 pm


adin

Tammy we used to live in Albuquerque and are currently attempting to move back—there are several ME/CFS'ers currently in Albuquerque that talk & meet every now and again. You probably want to PM Sushi for more info on everyone in ABQ. Fingers crossed that we'll be there soon. (hopefully we can find a place within the next couple of weeks…we've pretty much exhausted available options in Tijeras/Sandia Crest)

adin

Really hope it is soon!

Sushi

Forebearance January 26, 2013 at 4:54 pm

Thanks for sharing this, Karen! I'm so glad you had so much fun.
Forebearance

cph13 January 26, 2013 at 11:34 pm

Karen, WOW! Glad you all had such a wonderful time. Thanks so much for sharing the experience and giving many of us HOPE! Maybe even ENCOURGE some of us cowards, "like me".
Photos were the cherry on top. Everyone, Be well.

Starfive January 27, 2013 at 1:26 am

thanks Karen for posting. Being able to share and have understanding is amazing.

kurt January 27, 2013 at 6:09 pm

That was a trip down memory lane for me. Was working in San Antonio and making regular business trips to Albuquerque when a flu-like illness triggered my own CFS. I also had to get out of San Antonio, the heat was too much for me in the summers, although I miss the mild winters.

Thanks Karen for sharing your trip, I think we CFS patients need inspiration like that, something to look forward to. Even with our limitations there is no reason we have to live monastic lives. But trips or meet-ups definitely take some careful planning and flexibility.

K2 for Hope January 27, 2013 at 7:21 pm


Tammy

Hi Karen……….great that you could manage this………..wish I would have known………..I would have loved to meet other cfsers from PR…………I could have met you guys at the petroglyphs……….just up the road from me! I wonder……has anyone thought of having a meeting place once a year…..where members who think they can do it……meet up? I know it would be difficult but I for one would push through……..just to get to meet some other comrads…..it would be worth the push for me .

Tammy:

I have dreamed of that often, but always thought is was just a "pipe dream". I am glad there are so many here that may be interested in doing something like that.

To All:

Thanks for your input as I wanted to be sure everyone realized this was for all of us, not just those who are "moderate", but also for those who are bed-bound, as I once was, to know that it may be possible, some day, to do these things.

After posting the article, I started to think about an "annual" meetup. But, how to plan, how to manage, almost seemed impossible… but I always stand for Hope. Through it all, that's what keeps me going…

So, I'm going to start putting that into my brain, as it takes awhile for the blood flow to make sense of it all, and see what we can envision for something like that to happen.

I am a member of several "meetup" groups, although I cannot attend all the events, I am getting a better idea on how something like that could work. I would love to start a thread about what we could do, at least (or at first) in the US as that is where I live and I don't know the geographical limitations of other nations. Maybe, we can figure out a way to have an annual meeting in the US and other members in other countries could use our initiative to do one in their respective countries.

Or maybe we just start with regional meetings and go from there. It seems like in my travels there are some that could drive for others and some that would need to be driven…

Well, my brain is in hibernation right now, so I will have to wait for its' return.

Peace to all,
Karen

K2 for Hope January 27, 2013 at 7:27 pm


kurt

That was a trip down memory lane for me. Was working in San Antonio and making regular business trips to Albuquerque when a flu-like illness triggered my own CFS. I also had to get out of San Antonio, the heat was too much for me in the summers, although I miss the mild winters.

Thanks Karen for sharing your trip, I think we CFS patients need inspiration like that, something to look forward to. Even with our limitations there is no reason we have to live monastic lives. But trips or meet-ups definitely take some careful planning and flexibility.

Kurt:

I think flexibility is the most important as the planning was a bit haphazard. The idea came about, then was put on hold for several months, then it resurfaced, went under and resurfaced, etc.

The actual event was "decided" on a Tuesday to leave on that Thursday, but the brain had time, by then, to contemplate what needed to happen to make it reality.

Inspiration = Hope

:thumbsup:

K2

GcMAF Australia January 28, 2013 at 12:07 am


Sushi
Tammy

adin…………….Hi Aden……….you asked how long I've been in Albuquerque…….I am actually South of you in Alamogordo…………the petroglyphs I thought you guys were talking about is just North from me…….not far. Do you guys have a support group in Albuquerque?

Tammy, adin, Devi75

We were at the Petroglyph National Park, right on the edge of Albuquerque. When we get a couple more in Albuquerque, maybe we all could meet sometimes. I know of 5 here other than myself and while we communicate regularly it is mostly by phone and electronically as we are scattered around the city and to find a time when everyone is feeling well enough to meet is more difficult than herding cats.

When Adin, Jen and Karen came it was all spur of the minute and the cats were far flung in their dens (do cats have dens?). Next time we can be better organized (maybe? :confused:) and get more of us together.

Sushi

i have heard of herding goannas but never herd (?) of herding cats ROFL

K2 for Hope January 28, 2013 at 8:57 am


GcMAF Australia

i have heard of herding goannas but never herd (?) of herding cats ROFL

Hmm… So, what we are talking about is "herding" people with ME/CFS…. :eek:

That sounds almost more difficult than either herding cats or goannas…. :D

(Please don't be offended with this analogy as I think anyone with this illness will understand the complexity we are referring to…)

I still will try to wrap my brain around something like this, as the exhilaration of meeting people with ME/CFS is worth all the effort it will take.

I just cannot thank this community enough for all they contribute to everyone's health, mental status and well being. It was because of the members that I even had the beginning thoughts of visiting other ME/CFS'ers and you guys helped me enormously during my "down" times to keep that thought alive all the way to fruition.

Karen :hug:

GcMAF Australia January 28, 2013 at 10:07 pm


K2 for Hope

Hmm… So, what we are talking about is "herding" people with ME/CFS…. :eek:

That sounds almost more difficult than either herding cats or goannas…. :D

(Please don't be offended with this analogy as I think anyone with this illness will understand the complexity we are referring to…)

I still will try to wrap my brain around something like this, as the exhilaration of meeting people with ME/CFS is worth all the effort it will take.

I just cannot thank this community enough for all they contribute to everyone's health, mental status and well being. It was because of the members that I even had the beginning thoughts of visiting other ME/CFS'ers and you guys helped me enormously during my "down" times to keep that thought alive all the way to fruition.

Karen :hug:

The only thing more difficult than herding cats, goannas and MEs/CFSers
is herding doctors and other non believers:rofl:

Little Bluestem January 29, 2013 at 2:17 am

If you’re going to herd a goanna,
You’d better put on your bandana
And shades for your eyes,
Then look for your prize
As you head out across the savanna.

Previous post:

Next post: