Friday, September 30, 2011

I found a 'weblog' from my third month with Bell's Palsy, 8/14/10

Photo from about day 11 (I couldn't close my eye yet, but you could already see a dimple coming back and a crease or two---the crooked smile is due to the right side of my face being paralyzed by Bell's palsy in May 2010):

My First 3 Months: progression, emotions (guilt), soap box

Thursday, September 29, 2011

I pulled my hip, because apparently I'm 70 years old now

So, I think its because of lack exercise, but until its better I won't be getting any.  I am planning for it to go away by tomorrow so I can get back to yoga.

When I saw a rheumatologist last year (CFIDS patients have no shortage of doctors in their lives) he told me I have hyperflexion (more elastin than collagen, causing my joints to all bend backwards).  He said I probably never noticed it becuase I had been very fit as I entered my twenties (as a wildland firefighter and avid backbacker/mt biker, etc.) and did not feel any of the pain I might have otherwise started to feel by my thrities.  He showed me how weird my joints are, but they are the only joints I have so I never really knew that was different.  I never had to worry about my knees locking, they just bend backwards.  Apparently its very common and only causes problems if/when people's muscle tone decreases because the joints rub together and you can end up with arthritic-type conditions.

Wednesday, September 28, 2011

No crash this week (last week of September after Kintal Lake)

It's been a great month in terms of health.  I traveled to Hawaii with Jenni (lots of turtle blogs posted about that trip), followed immediately by a camping trip to Bowman Lake in Glacier National Park, followed the next weekend by a Girl scouts camping trip to Apgar in Glacier, followed this past weekend by a camping trip to Kintla Lake in Glacier for my birthday.  Some of the trips are covered in more detail in my Montana Momma blog.  Following a couple of these trips I caught colds that clung on a couple of times.  Otherwise though I wouldn't say I had major crashes, especially considering the level of activity on some of these trips.  I'm pretty pleased.

Top among the activities that could have caused crashes was getting caught in a storm on Kintla Lake in the Canoe.  Prior to that the level of exertion was very doable, with Greg paddling a lot so I could take pictures.  As a rain storm blew in, the wind became quite intense.  Another canoe was having trouble getting back before we started heading in.  We had to paddle really hard to make it back.  Without CFIDS it would have been exhausting.  That happened Sunday and it is now Wednesday.  If I were going to crash, I think it would have happened by now.

Wednesday, September 21, 2011

Chronic Fatigue beans

I don't know how prolific is too prolific in the world of blogging.  I tend to get excited about things, then maybe a little fixated.  I also don't know if it's bad form to post things from another person's blog.  But I think both standards would fly out the window in this case, as it's just too exciting (though probably not so much for healthy people).

The blog I'm pilfering from is 'Learning to Live with CFS' by Sue Jackson.  I've only visited her blog a few times, but it's very well written and worth checking out.  It seems to be full of those, "yes! I know that feeling!" inspiring posts.

She posted her excitement about a new non-profit called Chronic Fatigue Initiative.

The links above to Sue Jackson't blog and to the group's website will fill you in and surely be exciting to anyone with this disease.  But in a nutshell, I will relay the fact that they have 10 million dollars already to put toward research and describe themselves as, "accelerating the medical community's knowledge of Chronic Fatigue Syndrome through research grants and collaboration."

Is this goal different than that of other groups seeking better resesarch?  I'm really not sure.  I haven't invested emotionally in much that I hear about cures.  I haven't seen any that really rise above the others in terms of feasibility or personal applicability.  My energy goes toward symptom management and coping skills.  But I am interested in reading research that contributes to the pool of useful knowledge. 

This is now my second mystery illness, having recovered from Bell's palsy.  There isn't money to be made in treating that one, so there's just really nothing out there.   CFS generates more funding by far, but not enough to date.  So this is good news to sleep on.

Swan Medicine (beautiful video)

Amazing performance of Swan Lake by 'The Great Chinese State Circus'......cathardic and beautiful.  It doesn't even seem like it could be real.

Monday, September 19, 2011

More health all week

So, to recap, the week before last I was in Waikiki looking for turtles.  Last weekend I was in Glacier camping with my family.  Yesterday, I returned from a weekend Girlscout campout in another corner of Glacier (more pictures and detail in my outdoor blog).

I now have another round of work sludge (bread and roses blog) to contend with, which is impacting me, but I'm trying to cope as best I can.  These trips give me something to draw from for each round and they build me up as I see what I can do.  Being outside is very good for me.

The other leaders know my situation.  And I am happy to say, they understand.  They helped give me options that allowed me to rest and keep going without feeling guilty for what I wasn't doing.  I realized just now as I type that I didn't feel guilty for resting or for hiking less, I just appreciated all the help from other leaders.  We wouldn't have a troop otherwise.  And I'm very glad we do.

I chose to eat french toast even though I can't have dairy.  I felt it in my gut mid-day and it probably made me a little foggy, but I was already fighting a cold, so I couldn't really pick that out.  The french toast was covered with syrup into which ants had found their way....12 out of 24 people ate the syrup anyway (though most of us did take the ants out).

 I think campfire smoke impacted me both weekends, but this weekend was chilly and even wet, so I needed to spend time by the fire.  I love getting outside and seeing the things I can do, instead of being confined to my house having to face all things I'm not getting to do (primarily work).  The next photo is about how I felt and probably how I looked, followed by a picture of me trying to look awake.  The photo after that is the view I was enjoying at the time above Avalanche falls a bit upstream.


This was the first trip to Glacier for one of our girl scouts.  What's better than that?

Wednesday, September 14, 2011

Thursday's Turtles (3rd of 3 days of turtles)--lots of words and pictures

Thursday of last week (my Hawaii trip with Jenni) I was intending to check out of my hotel and wander around a little and maybe have lunch with a friend (Adam, who put my kids and I up last time; Jenni left the night before) before catching my plane.  I had a much cooler day than I expected.

I got my stuff mostly packed, then walked down the Waikiki beach to the wall where I saw turtles in June with the kids.  It was much earlier than they seem to come toward shore.  At the beach on the north shore, they were coming out of the water mid-day and staying out unitl at least late afternoon.  When they were feeding by the wall in June, we saw them around 1 or 2pm and watched them until at least 4 pm, when they moved to deeper water.

So that was a just-in-case walk and a chance to take pictures before putting my luggage and gear in hotel storage so I could walk around.  The wall itself is pretty with boats and surfers and waves behind it.  It was a beautiful day and watching surfers is really fun.  My favorite was a girl surfing with her dog.  Awesome.

After that I checked out and stored my stuff, then headed deeper into Waikiki to get souvenirs for the kids and to swim.  I found a great beach spot and started laying out my mat.  The woman next to me looked at me, her chin dropped, and she said in disbelief, "there's a turtle out there!".  I had to stare at her for a second before looking out to where she was pointing, in the middle of a crowd of swimmers along the most crowded area of the crowded Waikiki beach.  But there it was, lifted up by a wave, its green sillhouette tilted toward us and framed between two swimmers.  I went into the water but didn't see it again, so after a while I got out to get my binoculars.  I wanted to see if there was a crowd by the wall, because if there was one turtle by the crowded beach, there could very well be more.  I could only see a few people by the wall, but they were clearly staring down into the water, so I packed up my stuff and jogged up the beach to the wall.

When I got there I watched the first two turtles for a long time rolling in the waves.  I took a few pictures and videos with my little camera, then decided it was worth going for my good camera.  I should have been eating by then, and I hadn't had any coffee at all yet, but I hurried all the way back to my hotel and got my camera (and an underwater camera that Jenni bought me as part of my birthday present that was still half empty) and came back to the wall.

Luckily, I didn't get my good camera out right away.  The tide was high enough to stick the waterproof camer into the top of some of the waves that rolled by, and since there were turtles in those waves, I may have underwater turtle pictures.

As I stood in the exact location where a wave had destroyed my cell phone in June, a wave from the same weird angle (rebounding off another wall) drenched me and took my sunglasses right off my head.  The couple in the photo above watched with me as they danced around in the waves on their way to the bottom.  It wasn't very deep where they fell, so when the nearest turtle swam away from the wall, the couple lowered me down to where we thought the sunglasses might be.  As I leaned against the wall, a crab the size of my hand just happened to be right where I put my hand (without looking) and made me jump.  Being in the ocean makes me a little nervous and I couldn't see very well at all.  No luck with the glasses, but the couple passed down my underwater camera.  As I put it underwater they told me the turtle was coming back, so maybe he's in my picture.  Then they pulled me back up the wall.

After they left, there remained a fairly small number of on-lookers, with most people moving on fairly quickly.  It was great.  As the waves got higher I balanced on the wall and there ended up  being turtles on both sides (though the east side of the wall was packed with swimmers).  Turtles on the east were followed around for most of the time at close proximity by a small number of tourists.  Others stayed a respectful distance and one group, who was there before the turtles arrived, were unphased and kept playing catch, which also did not phase the turtles.  When there wasn't anyone in the water, turtles got close to me on both sides.  Especially when I was sitting down.  I had two huge turtles come up for air right beside me, one on each side, but the one on my right got caught in a wave that tossed it right toward me.   It was cool to be that close (again, in a setting that wasn't bothering the turtles) but that particular turtle was probably about 400 pounds (seeming significantly larger than the 300 to 350 pound turtles I'd seen the day before.

I got the best views after I put my camera away, but that was OK.  They would have been too close for good pictures and I was ready by then to just enjoy them.  I knew as I sat where I was sitting that it would be possible to get knocked off by a wave, but it still caught me totally off guard when it happened.  I was airborn and luckily missed all the rocks and on the way to the bottom.  The Australian that told me about the shark I had unknowingly swam with the day before (described in the blog about Wednesday's turtles) was ready to jump in and save me if she needed to.  But I was perfectly fine, so she helped me keep track of my hat so I could grab it.

There are amazing moments you can't recreate, and the day in June at the wall was incredible.  Especially since me kids were with me and because I was so obsessed with seeing them, and there they were.  This was incredible, too, though.  They got closer and closer and as the water rose, they were so near.  The waves tossed them around and they just rolled with the waves and came back gradually to where they wanted to be when the waves took them away.  Obvious life lessons to be had from turtles.  They didn't give up and float out to sea but they didn't waste their time fighting the ocean or the tide.  You can't watch sea turtles, especially in the water, and walk away without some difference in your capacity for balance, even if you are entirely unaware of the difference.

Since June, I often see turtles rolling in waves when I close my eyes, whether I'm consciously trying to draw up that image or not.  As I said in an earlier blog, I was obsessed with seeing them, but especially since being sick.  I didn't think they were going to cure me, but in a way I kind of did expect them to.  It's beyond my words or anyones words to explain how and why and to what extent, but seeing them and watching them truly has helped me.

Regular Days ~ Mom stuff

School days with two in school are very different.

Last year, on really bad CFIDS days Katie could get herself going and be up on time and have a smooth morning.  I HATED that she ever needed to do that.  I'm feeling pretty darn good right now.  But I saw turtles, so of course I am.  But I have a lot of normal days ahead of me.  I don't know what those days will be like.  I hope they stay good.  But even a cold can turn that around for a while.  And my unfortunate work situation will continue to bring stress that will continue to impact me.  I think I'm seperated enough from it right not for my health to be more impacted by more immediate factors.  If so, I can keep getting up with the kids....and either way I will have to.

One school morning can pack in a regular day's worth of nagging and bickering all packed in to an hour.  It is easier to keep my CFIDS temper at bay when it is spread out over the day.  That part of things has gotten much, much better.  But in some ways, that makes it harder for the kids to see my symptoms.  I think they want to feel like I am getting better.  I think they can see the improvement, but I think they need to see no symptoms in order to for it to count for them. 

That makes it harder for them and me when I do snap at them.  Those are some of the things that make me such a different mom with CFIDS than I was before.  Of course I snapped at them before, but it was different.

There are moms out there that have had this for years.  Some of them have kids who knew them before and some don't.  Katie remembers, but I'm not sure how well Christopher really does.  And I don't know which is harder.  I want Christopher to really, really know who I was before. 

But I want him to see that first hand.  And it is so very hard to let go of that.

I'm still just as torn as I have always been between acceptance (as a necessary aspect of effective coping) and a firm belief that I am going to recover.

That is one of the reasons I haven't seriously considered applying for disability retirement, even now that it is the only option I'm being given.  There is so much I can do and I want to focus on what I can do.  I am one of the lucky ones when it comes to this disease.  Not just because I can fly to Hawaii (for free) and see turtles.....but it does illustrate my point.  When my family went last fall, I spent a great deal of time in the hotel room resting (and ironically that was back when my employer was allowing me to work).  This time, it was rarely to never my health that limited how much we did (though hiking and running and climbing things was out).  That would not be the case for most people with this disease.

This is why I am blogging....this is cathardic and this disease is completely life changing.  Even the good days and the positive thoughts are all within the context of something really horrible.  Even at its best it takes away most of your life.  But still I am lucky and all the time I spend remembering that is worthwhile.

I am going to take a nap, then filter through my turtle pictures from the last day of my trip.

Monday, September 12, 2011

Wednesday's turtles (day 2 of 3 days of turtles)

Last week's blog "More turtles!!!!" was about the turtles Jenni and I saw on Tuesday of our Hawaii trip (the first day we looked for them).  These are some of the same turtles sunning again Wednesday, plus a new one, because I had to go back the next day.

And an earlier blog, from an earlier trip to Hawaii, started to explain why turtles are relevant to CFIDS (for now I'll just say that they are very relevant in my case and that I'll post more about that in the future).  If this is not the first post you've read, you can probably guess that I was reeeaaaaalllly excited to see them two days in a row.

There were fewer people there the second day, which was nice.  Jenni dropped me off at the turtle beach to go farther north along the north (Oahu) shore.  I brought snorkel gear with me Tuesday because I had seen snorkelers the day before and the water was fairly full of turtles.  There were always at least a few visible in the water along shore.

Wednesday, though, there were only a couple of people in the water and no turtles visible from shore.  I asked the volunteers how hard it was to keep a respectful distance once in the water.  They said it was pretty hard but not a problem....the turtles get curious and get close to snorkelers when they are curious and become hard to get away from.  So I had to give it a try.

Once in the water, it was very hard to see beyond my arms in some areas, and even where visibility was better I couldn't see far enough to be comfortable.  Each big rock kind of made me jumpy and I felt like I was spending all of my energy convincing myself I wasn't nervous (I'm not an experienced snorkeler or swimmer or ocean person).  I was fairly close to shore where I could see the turtle watchers and they could see me, but still, I didn't last more than 15 minutes before I just felt like I should get out.

The next day I just happened to meet a woman from Sydney who had been snorkeling along a different part of the same bay, really not far from where I had been.  She was with a guide and a group.  She was disappointed when there were no turtles in the water, but excited when the guide explained that a very large tiger shark was the reason.  She was even more excited when they saw it.  She said its jaws were enormous.  I was very glad to have gone ashore.

So the highlights from my time with the turtles that day:

I felt like a normal person (felt envigorated and not sick).
I got into a lengthy discussion about grizzly bears with a European living in Canada.
The Euro-Canadian and I kept serendipetously happening upon turtles that were repositioning, opening their eyes, and lifting their heads.
I am very glad not to have seen the tiger shark under those conditions.
The wind was warm and wonderful.
The sun on the turtles' backs was amazing.  Each turtle was radiant.

The name cards before each few pictures indicate which turtle is shown; two of them were there Tuesday, but  Missy was new.

I love aerial maps.  This map is what I found before our first trip to Oahu and it didn't help me find where on the island to go, but when I talked to locals and we got to that section of road I could tell right away I was in the right spot (Laniakea) because of the aerial photo.  Also a good description of the relationship between humans and Hawaiian green sea turtles compared to other places.

 I don't know if this link is current or accurate, but I just stumbled across this: development planned in Turtle Bay (I sure hope not)

Friday, September 9, 2011

On my way home after two more days of turtles

I'm in Salt Lake City, so my internet connection may not last long.  I have been up since 6 am Hawaii time Thursday morning.  Flight delays and full planes are making my return trip long.  I am hoping to get on to the late flight tonight (that is still six hours away) so I'm not stuck here overnight.

Another Montanan, Rose, got bumped with me for the first flight we tried off of Honolulu last night and we have been making and missing the same flights since then.  She's a fellow "non-rev" standby (her daughter works for Delta).  But she just departed for Helena, as she couldn't make it to Butte.  I had gotten out of traveling-by-myself mode.  She was neat and her daughter was born the same day as me. 

After Tuesday's awesomeness in regards to turtles, I was pretty happy, but even happier to get to hang out with them again on Wednesday.  I have pictures to put up that I am pretty excited about.

THEN, hanging out Thursday before my flight, the turtles were feeding by the pink hotel (where I saw them on my last Honolulu trip).  I still haven't met any locals who have seen them there.  I can't believe it happened again.  It was once again incredible.  But that'll be another post, too, starting with my sunglasses being at the bottom of the ocean and ending with me being at the bottom of the ocean.  There was a valiant but fruitless group effort toward recovery of the sunglasses and an Australian ready to save me from the Ocean but I was able to save myself.

If this post has no pictures, I had to run or lost internet, but I'm trying to put at least a couple up real quick.  I can't believe the last few days really happened.  I am very ready to see my kids.

There is a man at another computer table tapping his pen with tremendous force and constantly changing rythms.  It's too ridiculously aggravating to really be aggravated by....if a sitcom character were that annoying it would be too exaggerated to be believable.  I want to know what kind of pen he has that it can withstand that kind of force. 

Oh yay, now he's playing with the clicker thingy.  I think its time for me to go.

Wednesday, September 7, 2011

More turtles!!!!!

Soooo happy! 

This was another amazing experience and a very, very good CFIDS day.  Packed a lot in, but made it all the way through a late dinner and drive back to Waiki.  Even snorkeled twice AFTER the turtles, so a very amazing day for health.  

This is the beach I've checked for turtles each trip (but hadn't yet seen them there), and I was just thinking I'd stop real quick, "just in case" then we'd move on to other beaches, but there they were.  It was very hot and fairly crowded, so it was not as relaxing as last time, but it was amazing to see them up close and the people were excited and mostly repectful to one another and the turtles.  It was incredibly invigorating, and the fact that I did so well the rest of the day just furthers my belief that they help me.  Now I think they may even give me super powers, for how much I was able to do afterward.

These videos are of the the third turtle I watched up close, with a tiny shot of the fourth, who came out of the water as I was leaving.  A teanager that started coming last year, but I didn't hear a name or gender.

The first was Hao'Okanaka, basking by a big rock.  People around him were the funniest, beginning with a frenchman scolding the crowd in his picture for being in his picture, but waving his arms wildly in front of everyone else's picture.  It was amusing.  And a woman standing next to the turtle who kept asking where it was, who was very amused when she realized she was next to it.


And there were many turtles in the water close to shore.

These next pictures are of Brutus.  His rope was expanded when the third turtle came out of the water (in the video above).  The volunteers were great at keeping the crowd back without squelching curiosity or excitement and people were mostly respectful of the turtles space.  Almost entirely.

It was fun to watch the third turtle come out of the water (just meaning the third while I was there).  The volunteer in the pictures was very nice and knowledgeable.  And professional...I say volunteer but I'm not actually sure.


Jenni is very patient...we've been friends for at least 26 years.

And this is the teenager that came out of the water as we were leaving.

Then we went snorkeling at a couple of north shore beaches and Jenni bought me an early birthday dinner at a great Thai place.

And before turtles, found awesome food, including a NON-dairy mocha cupcake!  I haven't had a cupcake in a really, really long time.  For the sugar, it was a CFIDS mistake that I got away with, happily, because it was pretty darn cool to be eating chocolate.