Tag Archives: scleroderma

Journey from Bocas del Toro to Changuinola, Panama

23 Friday Mar 2012

Posted by in Trips

≈ 3 Comments

Tags

, , , , , , , , , , , , , , , , , ,

I’m writing this post on a very hard bed in a $30/night “hotel” in the town of Changuinola, Panama. If you’ve ever eaten a Chiquita banana it likely came from Changuinola.

Those of you who know me well know that #1 I would never be at a $30/night hotel, and #2 if I were, I likely would not admit it. Let me explain how we got here.

We were supposed to check out of our hotel at Bocas del Toro tomorrow, but realized that we should probably get to Changuinola earlier so we could pick up our car to drive the 4-5 hour journey to our next stop at Los Quetzales Lodge in Guadalupe, near the Boquette volcano area to begin the birding portion of our Panama adventure. Turns out, no matter how much research one does ahead of time, you really don’t know how things really work until you get there. After a couple of days on the island and with a little bit of intel from locals we figured we should get to Changuinola a day earlier to get our car and make the drive through the mountains so we didn’t have to search for the Lodge in the dark.

Just after checking out of Playa Tortuga–our Bocas accommodations–it began to rain. No, correct that–it was a downpour. 20120323-173910.jpg

I almost aborted our dive plans today because of the rain. No, I’m not chicken. It’s just that I get easily chilled on the boat when I can’t get dry. (Blame the whole scleroderma / reynaud’s thing I’ve got going on.) But I’m glad I did the dives anyway. It was warm in the water and Panama–Bocas del Toro in particular–is a great place for beginner divers, which I still consider myself. (I only had 30 dives under my belt when I arrived. Now I have 36!)

The water here is calm and tranquil. I took advantage of that and practiced putting on my BCD in the water rather than strapping it and the tank onto me in the boat. I actually like the backward roll off a boat, but I hate standing with that tank and BCD. Not sure I could to the BCD thing in the water at othr places. Sometimes the water is just a little too rocky for me. But in Panama it was nice.

Visibility in the water is not spectacular. It’s no Belize or Cozumel, that’s for sure, but I saw some new species, including loads of star fish, trumpet fish and squid.

The other good thing about diving in Bocas is that it’s so economical. We paid only $54 pp for a two-tank dive. Plus, the boats are smaller, which means fewer people/divers in your group. The attention you get is so much more personal. We dove all three days with Bocas Water Sports. Loved them! They’re a PADI operation and the owner, John, from the States, is a hoot.

20120323-174033.jpg

We had lunch at Under the Palm Restaurant after our dives. If you’re ever at Bocas del Toro I highly recommend it.
20120323-175858.jpg

It was away from Hostel Row and the food was pretty darn good and it was quiet. It also has the most awesome bathroom in town with really soft, Charmin-like toilet paper.

20120323-181934.jpg

20120323-182131.jpg

20120323-180123.jpg

20120323-180145.jpg

Following lunch we made our way to the water taxi to get back to the mainland. Water taxis are pretty cheap–only $5 pp. I was a little worried that our luggage at the very back was going to fly off at any moment. Not sure it was strapped down. Wondered what I would do if it did end up in the ocean. Trying not to worry, I turned my attention to the mangroves and the occasional motorized canoe going by. (At one point, I spotted a little family of three in their canoe. Mom was in the front paddling and older brother in the back paddling while little sister was in the middle with a little white bucket bailing out water. Not a good sign.)

As soon as the water taxi arrived at Almarante we were met by three very enterprising young men, about 16 years or so who asked us if we needed a taxi and as soon as we said yes, each grabbed one of our bags and started walking. “We’ll get you a taxi,” one of them said.

We obediently followed the three on a gravel road for about five yards, then one of the young men hollered to a yellow taxi, which was about 30 yards away and about to go another direction, but he backed up and then drove toward us. Like little worker bees, the young men dumped our luggage in the trunk of the car and I gave then each a $1 tip for their help. Quite the little operation they got going there.

Off we go! It was to be about a 40 minute drive to Changuinola and only costs $20 by taxi. Bargain. Except as soon as I got in, I noticed no seat belts. I was hoping that we didn’t need them, but this wasn’t my first time as a passenger in a Panamanian taxi. Hence my nerves. The drive was hilly and thank goodness the road was good, even if the drivers weren’t. For awhile there I thought I was living the real life version of my favorite app game, “Tiny Wings,” and resisted the temptation to yell out, “Wa Hoooooooo!”

At one point, it began to rain pretty seriously and so our driver pulled over and reached into his glove compartment to pull out a wrench. “Holy cow,” I thought. He’s going to kill us Clue style or the car is dead. Just roll with it.”

Glad I rolled. Turns out the only way to get the windows up was by wrench. He opened my door and where there was no handle crank to roll up the window he used the wrench to turn the little piece of protruding metal so the window would go up. “Automatic windows!” he exclaimed.

Ha Ha! His car might be a piece of crap, but he’s got a sense of humor about it. I should too. (Though I have to tell you that as we descended from every hill I was praying they guy’s brakes were working.)

He made his way around the car and did the same for Steve’s window. Okay, so now it will be warm in the car (no air conditioning, natch), but hey, the guy made sure we didn’t get wet. He deserves a good tip!

Our driver did get us to our hotel in Changuinola safely and I did give him a good tip. We chose the hotel because it was where the Avis rental car company is. We would stay the night here and then leave first thing in the morning with our car for our long drive to Los Quetzales Lodge.

Turns out, Avis, in spite of my initial confirmation upon booking several weeks ago and second confirmation from them via email just 3 days ago, there is no car. There’s an Avis representative, but he has no cars. (What the what?)

SO glad we left Bocas to get here a day earlier. Otherwise, we’d be in a world of hurt. Turns out, there’s a bus that goes to David City, where there’s an airport and it’s just outside of where our next accommodations are, so the agent here (who clearly has nothing else to do since he has no cars) called David City Avis and got us a car booked. Well, fingers crossed.

Meanwhile, I’m sitting on a very hard bed (it seems to be a foam mattress on plywood) writing as our scuba gear and swimsuits dry out–we have it all hanging around the room, so we look very third-world ourselves and Steve is sleeping/snoring while I type and eat a package of Chips Ahoy cookies. The air conditioner is so loud that it’s actually drowning out Steve’s snoring and I can’t help but be amused by the wall art in our room.
20120323-174952.jpg

Why a $30 hotel? Folks, it’s truly the best place in town. We had no choice and remember, we’re not in Panama City. Changuinola is still pretty third-world. Maybe second-world at best. All I care about right now is that we got here in one piece, we have a place to sleep, we have transportation via bus to David City and we have a rental car waiting for us there. I do know that Los Quetzales lodge has a spa. I’m so booking a massage once I get there.

Now time to watch “Hillbilly Handfishin'” in Espanol on the telly (“Pescadores Lunes!”) Seems to be all that’s on. I’m just rollin’ with it.

Between Thanksgivings

20 Sunday Nov 2011

Posted by in Uncategorized

≈ 7 Comments

Tags

, , , , , , , , ,

The following are “journal entries” I either documented on Facebook or jotted down in a notebook this past year. It chronicles the year as I worked my way through coping with my broken leg/ankle.

November 25, 2010 – Thanksgiving Day,

A pretty fantastic Thanksgiving meal at local restaurant, Tuscany. Love that it’s just down the street from us and after a short nap, we hit the road for the four-hour drive to Zion National Park in Southern Utah!

November 26, 2010 – Oh Crap.

The day started out beautifully. We hiked Emerald Pools and though it was very chilly, I felt energized and so excited to be enjoying the beauty. But on the way down I slid on some ice and hurt my ankle. (Well, “hurt” sounds too minor. The foot was actually pointing the wrong direction.) Let me be clear: IT HURT LIKE HELL! Steve and two lady hikers who came upon us dragged me about 800 meters while we waited for the Park Ranger to arrive. We were worried about hypothermia setting in, hence the need to get me out of the shade and into the sun. I was worried about my hands and feet. I have Reynaud’s Syndrome, which in most instances is just inconvenient, as it makes my hands and feet turn white, then purple, and then red and swollen when exposed to cold. But in this case, I was worried that I’d get frost bite much quicker than the average person.

Search and Rescue eventually reached me and carried me out. Still, at this point, I’m thinking it’s just a sprained ankle. I was loaded into the ambulance and taken an hour away to St. George.

So I broke my tibia and fibula. Seems as though I have to have surgery so I opted to have it done back in Salt Lake City. After loads of drugs, the staff tried to put Humpty Dumpty back together again and wrapped up my leg and we went back to the hotel in Zion.

November 29, 2010 – Phone calls

First call: Call work to let them know it’s going to be awhile before I make it into work, which has me really worried. I just started this job FOUR WEEKS AGO! (I actually texted to my boss the picture of me being carried off by Search and Rescue. There’s nothing better than great proof on why you’re not going to be in the office.)

Second call: Find a surgeon. So how do you shop around for a surgeon? Well, you start making phone calls. I finally decided to call my Physical Therapist who actually worked with me the previous summer on that very same ankle. (For acute achilles tendonitis.) First of all, she was not happy to hear that I messed up a perfectly good ankle but did give me the name of a good surgeon.

Third call: MOM!!!! Steve’s great and all, but I needed my mother around. She knows how to deal with these things.

November 30, 2010 – New Hardware

Today is surgery day. Feeling okay about it until I saw this Reader’s Digest sitting in the waiting room before I went in.

Everything seemed to have come out okay. A plate, five screws and 2 pins later I looked like this:

December 1 – 10, 2010 – The Lost Days

Don’t remember much about the 10 days following surgery. Except there was a lot of television (I watched so much HGTV that I’m certain I can build a house, decorate it and landscape it with no problem), a lot of vomiting (and mom was always there with the bucket), and a lot of pain. Actually, it wasn’t pain, it was just extreme discomfort. I learned a big lesson–the difference between being in pain and being uncomfortable. And that’s how I got off my pain meds so quickly.

December 24, 2010 – On Our Own

Mom left to go back to Oregon today. I was very, very sad to see her go. I hope that one day I can be like her and drop everything to go help someone for 25 days. Okay, let’s see how Steve does this on his own.

January 4, 2011 – Back to Work

I needed a wheelchair to go back to work. I had crutches, of course, but it’s a little problematic when your hands are swollen all the time like mine are (the Reynaud’s and this crazy autoimmune thing I’ve got going on), but mostly, it’s tough carrying around a laptop and notebook to meetings when you’re on crutches. I’m tired a lot. I’m also feeling quite lost–remember, I just started this job and was in it for only four weeks before I was out on medical for five weeks. I hate talking to my direct reports in a wheelchair or while sitting down. I have to look up at them. I feel like I’m not very commanding or even important. I’ve also discovered what’s ADA compliant in the office and what isn’t. I’m so dehydrated because I try not to drink water so I don’t have to use the bathroom at work. It’s such an ordeal–I have to take the elevator to another floor to use an ADA compliant bathroom.

January 10, 2011 – Project Runway

This injury changes just about everything. It’s hard to look cute when you’ve got the Storm Trooper boot on. But thank goodness for footless tights. (Regular tights pulled too much on the injured foot.) A whole world of possibilities have opened for me now.

And I’ve become the queen of online purchasing. It’s just too much of an ordeal to go out shopping in either the wheelchair or on crutches. Navigating around in the wintertime just feeds my fear of slipping.

February 4, 2011 – Physical Therapy

I love my physical therapist, but this time around I’m beginning to hate her. Big crocodile tears rolled down my face today as she pushed on my ankle to try to get back my dorsal flection. This can’t be happening, I thought. What if I can’t walk again? Those are real thoughts. But the more profound thought for me has been around, “What if I get fatter?” This injury couldn’t have come at a worse time. I have a chronic illness already (at the time we thought it was lupus), I have an extraordinarily busy job, I travel, and I already needed to lose a few pounds. Now this?! Ugh. So endure the pain, I must. I’m now doing physical therapy three times a week.

February 15, 2011 – Shoes!

Today I can wear shoes!

February 20, 2011 – Navigating Airports

I’ve had two business trips for work since the accident. Steve’s been my sherpa for both trips. Thank goodness he has the flexibility to do that. The whole airport thing is an ordeal, though. It does allow me to bump to the front of the line, but getting through security is a more manual process. Poor Steve’s back–he’s had to manage the luggage and me in the wheel chair. While in Orlando, we had some time and went to Cocoa Beach and I practiced walking on the sand with the help of my crutches.

March 12, 2011 – Hiring a Trainer

I’m not done with physical therapy yet, but I went back to the gym and hired a trainer anyway. Steve also is training along with me, so it’s turned out to be quite fun. It’s been 3 and 1/2 months since I’ve broken out in a sweat that wasn’t induced by some sort of medication or menopause, so it felt great to feel a little raise in endorphins. It’s still a little awkward–I can’t do everything I used to do, but I’m determined. Besides, my clothes don’t seem to be fitting anymore and it’s getting quite depressing. I have to do something about this weight gain. All this sitting around for 3 plus months just sucks.

June 3, 2011 – Graduation Day

Today I graduated from Physical Therapy. You get a t-shirt when you graduate.It’s kind of weird, because for the past 4 and 1/2 months the folks at Mountain Land Physical Therapy have been a big part of my life.

I still have a great deal of work to do–my dorsal flection still is not where it should be and I still limp. Moreso, my confidence isn’t where it should be.

June 16, 2011 – What goes around comes around

Steve had surgery oh his nose today. It’s his turn to get all the attention and I’m happy to help him out. I don’t think I could ever do enough to repay him back for all the help he’s been to me.

August 9, 2011 – Getting older just doesn’t help

I turned 45 today. I still limp from my injury, though. My legs (both of them) are still stiff. I think the 3 and 1/2 months of not walking took its toll on my body. I know I don’t have lupus…I can sense it. Thank goodness I have an appointment with a new rheumatologist and hopefully I can get some answers. I seem to be working long hours at the office, which isn’t helping anything with my body right now. Will have to seek a balance somehow.

September 5, 2011 – Zumba

I may still limp. I may have those days where I feel like I’m moving in cement (thank you, autoimmune disease, which I now know is scleroderma), but there’s something about Zumba that helps with both my confidence and my ability to still feel like I can move. I do not lie when I say that there are sometimes I’m nearly moved to tears during a Zumba class. It’s almost the same feeling I’ve gotten when doing yoga. I think it must tap into something inside of me that brings my emotions to the surface.

The best part is this: I often limp as I walk into Zumba and when I’m done I can walk pretty normally.

November 20, 2011 – Cycling through it all

This brings me to here–just days before Thanksgiving. I think this week I’ve turned a corner. Sure, I’ve gained 15 pounds this year WHICH I BLAME SOLELY ON THIS INJURY! But I’m at the point now where I can just let it all go and try to get back on track. It’s been a year of making my place at a new job, getting my confidence back with simple things like walking, and learning to receive help from others. I also feel that this year I was able to move forward in getting answers for my chronic condition–learning that it’s not one disease but another one.

My father died suddenly and unexpectedly on January 3rd in 1996. It was a tough year that followed, but I remember distinctively that I felt as though a burden was lifted as I rang the New Year in with my mom on 1997. I felt as though I was done cycling through that year and it was time to move on. Big things happened to me as I moved forward. I went to graduate school, moved up the career ladder, traveled and eventually found my husband.

I think I’m done cycling through with this injury now. I still have a ways to go with getting my foot back to normal, but I want to let go of the fear.

Oh, and I want to let go of all those medical bills too.

Have a wonderful Thanksgiving!

I know, you thought I was an athlete, right?

19 Wednesday Oct 2011

Posted by in Uncategorized

≈ 2 Comments

Tags

, , ,

I wasn’t very athletic when I grew up.  In fact, the whole P.E. thing alarmed me when I started Junior High School and discovered that we had to actually shower in front of each other. I mean, I never got naked in front of my own family, why would people think that its okay to get naked in front of girls from your math or choir class?

And then I felt like I got the coveted Willie Wonka golden ticket–the doctor’s note excusing me from P.E.  I had bad knees that seemed to dislocate just by turning left.  Or right.  It was both knees and after suffering a dislocated knee during line soccer and three knee operations later, there was just too much paperwork for the school administration to have to go through every time it happened that they welcomed the doctor note.

So all during Junior High and High School I took other electives like calligraphy or jewelry making or movie making and relished in the fact that I didn’t have to get naked in public.

Once I entered college, though, I decided to look at all the various options for physical education (mostly because I had to in order to graduate).  I tried dance aerobics, tennis and swimming.  All the girls in dance aerobics apparently were ex-high school cheerleaders and I felt like the biggest dork.  They all seemed to already know about quick-ball change and v-steps and the ol’ standard, grapevine. This was all new to me.  They never taught this in calligraphy class.   Tennis made me feel worse.  (“You  mean I have to run after the ball?  What kind of game is this?”) At least with swimming I started to get a little confidence. Especially when I was able to do the butterfly.  (I rocked!) Since then I took that confidence and discovered step aerobics, kick boxing, weight lifting, spinning, hiking,

Fast forward to now.  I now feel like I did when I was in junior high where I got the golden ticket excuse to get out of P.E. But it’s not the kind of note I want.  Having an auto immune chronic illness means I have to make sure that I’m exercising, but sometimes the fatigue just takes over.

The best way to describe it is this way:  It’s like moving in cement.

But tonight I felt a little normal again.  After a long day at work my super duper supportive husband went to the gym with me tonight and we attended our weight lifting class and then I stayed for the Zumba class.  I just love Zumba!  It’s the one class where even if I am moving in cement I can still move. It’s freeing and fun.  I feel like I’m able to open up it kind of makes me feel young again. There are all shapes and sizes in the class, not to mention ages. It’s fun and such a stress release for me  In fact, my husband goes nearly every time with me and that’s a great example of the kind of support he gives me. And I think he has fun too.

I was thinking tonight during the Zumba class that it doesn’t matter that I can’t move like I used to.  I’m just so glad I’m moving.  It seems like I started out my teenage years not caring about P.E., but now that I need to move I’m grateful for the days when I can. And tonight I could and had a blast.

 

 

 

 

Ugh. I’m chronic.

04 Tuesday Oct 2011

Posted by in Uncategorized

≈ 4 Comments

Tags

, , , , , , ,

After giving it much thought, I’m going to come out of the proverbial closet on this one.

I have a chronic illness.

There are a few reasons why I originally didn’t want to “come out” on this one. First of all, there’s the whole privacy issue with one’s own health care. Do I want people to know that something is wrong? What if my employer used this against me? What if people looked at me differently? What if it kept me from achieving something I really wanted because I was held back by someone else?

The other reason for maybe not going public was that I didn’t want to become depressing. Not just for readers but for myself too. I’m not judging those who find therapy in the Internet, but it’s not my approach on how I want to manage my own situation. I often have to give myself a break from the Internet–mostly when I’m hunting for solutions–because often times the people who are suffering the most tend to also be looking for answers and frequently post some of the saddest conditions. There’s a lot of hopeless folks out there who seem to be facing many challenges. It can be very depressing for those going through it and for those looking for answers.

Should I be acerbic? I might be, but I don’t think that’s going to be my approach. Should I be funny about it? Hmmm, I might laugh at something now and then, but not everything is funny. Sometimes it’s just plain annoying, inconvenient, and downright frustrating. Should I be a grassroots advocate for change or research or try to get people to pay attention to a rare condition? Oh, I wish I could. But with a very hectic corporate job with oodles of responsibilities, for now all I can do is keep up with that and make sure I’m staying on top of my own health, which requires consistent exercising at the gym. For now, I’ll have to find other ways to champion the cause.

What I do know is that this blog isn’t going to be all about my illness. I don’t think readers can bear that and I know I can’t. Part of living with a chronic illness is the living part. I’d rather focus on the other parts of my life that bring me joy. For now, this chronic illness that I have is forcing me to make decisions–about how I do things and when I do them as well as how much I do them. But I can still do them for now. And I’d rather try to find work-arounds rather than spin my head out of control by focusing everything in my life around the illness.

So, in case you’re wondering, I don’t have lupus. (Remember, in an earlier post, I mentioned that I was misdiagnosed four 1/2 years ago.) Most people’s reaction when I tell them that is “Wow! That’s great news!” While that’s great news, I just traded one disease for another. The official diagnosis I have is scleroderma. It’s part of the auto immune family and fortunately, it hasn’t impacted my organs at this point. And it just may not. We suspect that I’ve had it for about five years now and usually if the organs are involved that gets manifested in those first five years. But the doctor did inform me, “never say never.” Yes, there’s always a disclaimer.

Where do I go from here? Well, there’s no cure — just managing the symptoms. I can’t really play piano like I used to–it’s been that way for the last four years. Most of this has been manifested in my hands, which are puffy and swollen most of the time. (When my rheumatologist delivered the diagnosis news he said, “Well, you’ve been dealt a bad hand,” to which I replied. “So to speak.” See? There are appropriate times to be humorous, no?)

We’ve finally got me on some medication to manage the Reynaud’s Syndrome, and that’s been a blessing. And I am now pleased with my new rheumatologist and next month I’m seeing a gastroenterologist for consultation on other issues related to the disease. I’m keeping my fingers crossed that he’ll have some more solutions for me as well. (Oh duh. I can’t cross my fingers–too swollen. Ha! More scleroderma humor!)

So why write about it? Why am I not being private about it? Because keeping it a secret just adds to my stress. I’m not ashamed about it and besides, maybe there’s someone out there who might identify with what I’m going through.

I mean, for Pete’s sake, I’m over 40. I was bound to have something happen to me.