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Wednesday, January 27, 2016

DisabITALY - Traveling to Italy with CRPS.

A two-week trip to Italy with my family; something I have been dreaming about for many years.  I have put off taking the trip because I have Complex Regional Pain Syndrome, a chronic neurological pain disorder and traveling can be very difficult. However, I have done my due diligence.  It has taken me almost a year to plan this vacation. I researched how to travel, fly, tour, etc. with a disability and I was ready for this amazing adventure.

I had it all arranged. I prioritized what sites I wanted to see and developed an "A" and a "B" list of our top sites. My overall sightseeing plan was to dedicate each morning to tours on the "A" list with my family. We would all have lunch together and then I would take a taxicab back to our hotel. My husband and two kids (17 & 14) would then continue on exploring for the afternoon and we would meet up for dinner.  I knew I would be disappointed not seeing the Coliseum in Rome, or the Uffizi in Florence but hey, I was going to Italy!

Our adventure started out in Naples.  We would be in this city for three days. The travel agent we used recommended two different day tours. Our first tour was an eight-hour excursion to Pompeii and the Almafi Coast.  I knew the day was going to be long, but I thought since a great deal of the time I would be on the bus, I would use that time to relax and recover. Now I know why people should never assume things. Eight hours out no matter what you are doing, is eight hours out. Way too much for a CRPS patient to take on in a day.

We arrived in historic Pompeii. Gazing upon these ruins that were uncovered from so long ago made me feel as if I was transported into my high school Social Studies textbook.  It was surreal. As we started walking on our guided tour, the walk became more difficult. The streets were constructed of uneven stones.  I had to look down at all times as to not trip in a divot. At one point, when I felt as if I really could not walk anymore, I asked the tour guide where I could go to sit and just wait for the rest of the group.  It was then I discovered that I had to continue walking to the end of the tour to exit the city of Pompeii.  When we reached our bus, my pain level was through the roof.  The tour was then continuing to the Almafi Coast. My family tells me the ride was beautiful and there were gorgeous sites to see along the way. I would not know; I was in too much pain and had to sleep during the ride.  I could not get off the bus when we got to the scenic overview or the local shop.  We eventually got to the Almafi Coast.  This was a beautiful, quaint shopping area.  Eventually I fell asleep for the remainder of that day's bus ride back to Naples.

That night, back in Naples, we decided to go to dinner. The concierge suggested a restaurant close by to the hotel. Walking around the city of Naples is extremely frightening, especially if you already have some trouble walking. The roads are extremely narrow and yet they are still meant as two-way streets and for pedestrians as well. The sidewalks are limited and very difficult to walk.  It would be nearly impossible to navigate a wheelchair. The sidewalks are made up of stones with many gaps between; again I was forced to look down so that my cane did not get stuck in the crevices.

Our next day was visiting Capri and Ana Capri.  Absolutely stunning islands, but again not very handicap friendly.  There were no smooth roads and at several times climbing many steps was unavoidable. However on this trip there were varied times I was able to separate myself from the group, rest, sit at a cafe while they toured a specific area.

Our next city on our itinerary was Rome. As you can imagine, with many of the sites predating 0AD there were hardly any places that you can consider handicap accessible.  There were stairs everywhere, and again the streets and sidewalks were difficult to navigate. I did however in Rome keep to my plan. I went out and toured in the morning with my family, had lunch and then returned to the hotel as they continued on sightseeing for the afternoon.  Although I was sad I was not with them, I was very glad I was not holding them back.  I never want them to resent me for having this horrible monster of a disease.
Although the streets and famous landmarks of Rome were not easily accessible physically, the restaurants and hotels are wonderfully accommodating. Even those with food allergies should not have much trouble while staying in Italy. Gluten-free, not a problem, so many hotels, restaurants, rest stops, and supermarkets offered substitutions.

Our three days in Rome went quickly and we were then off to Florence. A wonderful thing about Florence is that the city is flat and you can walk anywhere, point to point in 20 minutes. Now, for me 20 minutes of walking is too much.  However, I seemed to make it through because we would never walk 20 minutes straight. Somehow we would get sidetracked and we stop into a cafe for coffee, and then a patisserie for gelato.  In Florence, I was able to cross off everything on my "A" and many off my "B" list as well. Climbing the Duomo, and walking down to see the crypts would have to wait for another visit.

We exhausted our stay in Florence, so we set out for a day in Verona. As soon as we arrived, I knew I was not going to have to worry about tripping, or big steps to get off and on sidewalks.  To begin with, there were many handicapped parking spaces. This was the first time I had seen a reserved spot in our previous nine days in Italy. The sidewalks were all even and wide.  In the square of Verona and its streets the roads are smooth like marble. No cobblestones, or broken up rocks to worry about.  If you rely on a wheelchair, you will have no problem in Verona.  Even at the open market, the aisles are wide enough to accommodate a wheelchair or scooter.

We continued on to Venice.  Venice is a beautiful and picturesque; no postcard could do the sights justice. There are however many little bridges that you need to walk up and down about 15-20 steps that cross over the many, many canals.

We visited several of the islands of Venice, and with the exception for a handful of bridges near St. Mark's Square, I have no idea how these islands could possible be handicap friendly/wheelchair accessible.  There are no cars.  Only water taxis/shuttles are available.  These small boats are not easily maneuvered if you have mobility issues.  Even docked, a small boat moves up and down with the tide and this is very problematic for a handicapped individual.  There is no handrail that can eliminate the fear and uncertainty you experience getting on and off a small boat.  Although there are no potholes in the canals, waves and cross currents can cause the boat to rock, shift and slam you around.


I feel bad for making such a bold and wide statement but in my opinion, Italy is not a handicapped accessible country. If you are bound to a wheelchair, you may find it very difficult to visit many of the famous landmarks.

Wednesday, December 5, 2012

Vacation time

Wednesday, December 5, 2012

I have been home now for 2 1/2 weeks.  Still on a steady course - which is so wonderful.

These past couple have weeks have been like a Caribbean vacation.  You arrive at your tropical resort.  You see all the great new things the island has to offer that you generally can not do at home.  The food prepared by the local chefs tastes better, the lavish gardens contain exotic flowers, the plush towels in your guest room are so much softer than those at your home.  At the silky, sandy beach you slowly ease into the beautiful, crystal water.  It is a little cold, so you back out a bit, but then inch back in hesitantly and then swim off.  However, every so often while you are reading out by the pool, dark grey clouds roll in and a brief shower puts a damper on the day's activities.  From then on, you wonder each time you leave your room if the weather will hold out for you while on your excursion.  On the whole, you are enjoying your time, but the "what-if the weather ruins my plans?" thoughts are in the back of your mind.

I have been doing so well.  (I am almost scared to write this- I do not want to curse myself)  So many things that I have always done I feel as if I am experiencing for the first time.  My meals actually do taste better.  I have an appetite again.  I guess eating without a fire inside my body is enjoyable.  Hugs-- I know sounds strange.  What can be different about a hug?  Before a month ago, I would be scared of hugs.  People's touch on my body really did hurt.  But I never felt comfortable telling everyone -- don't touch me.  With each encounter I had I would try to prepare and almost brace myself for a hug.  My children's hugs feel like magic now.  I almost get chills.  Their touch brings me pleasure instead of pain.

The "Caribbean Storm" - I still cannot do it all.  (I know no one can)  What I mean is I have to really, really pace myself.  This is something I do not like doing.  When my pain level was extremely high, it was easier to pace. (I didn't like it, but it was blatantly obvious, so really there was no choice)  Now, the pain has subsided - it is like a day at the beach - and I can almost pretend to be "normal" I have to continue to keep stopping myself or I really wind up suffering.  The pain will return, my knee will swell, and becoming burning hot and change to a weird reddish-purplish color.  
If I go to the grocery store - well, that was my activity for the day.  No grocery shopping and then browsing the local Bed, Bath & Beyond.  If I did the result would that I come home, and it as if I can hardly walk.  I think in my head because the pain has subsided that I can do these silly things.  I forget - I still have RSD.  That has not disappeared and until we discover a cure it never will be out of my life.  So nowadays, as much as I do not want to admit it - my days are very carefully planned out.  One activity or outing a day - no more.  Last week, I was going to go to concert that began at 7 pm.  Knowing this, I spent the day quietly at home.  That is frustrating to me -- but if I do it this way, I get to go to the concert and really enjoy it.

I am SO VERY grateful for feeling as good as I do right now.  It is an amazing high to be able to walk without the feeling of a burning axe in my knee.

When those grey storm clouds are coming over me - I do not know.  But for now, I will enjoy my Mai-Tai and soak up the sun.



Saturday, November 24, 2012

Home for a week....

Saturday, November 24, 2012

I have been home now for a week.  Things are different.

My pain has definitely changed.  I know it is there, I can feel it.  However it is as if someone has hit the mute button over it.  It is just so incredible that I do not feel that I am being doused with gasoline and set afire.

I have been getting around mostly without my cane -- what a freeing feeling.
I have gained a lot more self-confidence.  I hate walking with a cane.  Being without it one step closer to being "normal"

For reasons I can not explain, my sleep has gotten worse - something I never thought I could say since it was so poor from the start.
I can no longer sleep for more that an hour and 1/2 at a time.  That is extremely frustrating.
And I will take the big assumption that this is the reason why I am extremely tired all day.

Now here is the difficult part of being back --- There is not much known about the Calmare treatment.  No doubt, I am having a wonderful, positive result.  However, the uncertainty of the therapy is making me wild.

It is so hard to be comfortable and happy with my reduced pain when I am constantly thinking of "is this going to last?' "how bad is it going to feel when the pain returns?" "when will that be?"
I used to shake my head and question how could people who found a treatment that helped (no matter what that therapy was) be negative.  I could not understand why those people were not jumping for joy at the idea of their pain being reduced.  I always said, I would be shouting from the rooftops and dancing until dawn when my pain became more bearable.  the idea of being pessimistic about being well seems ridiculous.
Unfortunately, I understand this now.

All I have know for 16 years is pain - extreme pain.  Now that it has diminished, it is almost too good to be true.  I want it to last - but I know it will not forever.  The uncertainty of that time frame can be maddening.

Here is the other tough part -- I feel as if everyone is watching me.  My children ask me constantly "are you good?" My friends call and want to know my status daily.  Family wants me to do daily check-ins.
Now, I realize all of this comes from people loving me and caring about my well-being.  It is so soothing knowing that I have so many people in my corner, rooting for me everyday.
The flip side is that I am getting stressed out answering my loved one's questions.  I will tell the members of my village "that I am doing well, and no I do not know when this will wear off."
I have been noticing that every time I have to answer these type of questions, my body starts to stiffen up.  Any good feeling I may have been experiencing certainly seems to then dissipate.  So, for now on - please do not take offense, but I going back to a standard, "I am doing well, thank you" 
Please know I so do appreciate everything you have done - from providing rides for my children, to just a "like" on my facebook status.  
I just want to try and make this treatment last as long as possible - 
I promise to give status updates.
You can still talk, chat, etc with me -- just let's not lead off with "how is your pain today?"

Have a great weekend.







Sunday, November 18, 2012

I'm home

Sunday, November 18, 2012  

My flight home on Friday was uneventful - just the way I like it.

Steve met me at the airport with flowers.  I am so excited to get home and see my kids.
As soon as I opened the door - there stood Alana & Landon (each one holding one of the cats)
I got hugs, kisses and a beautiful card.
I missed home.

Even though I was so anxious to sleep in my own bed, I did not sleep very well.  I am not sure exactly why.
Saturday started off lovely - breakfast with my family, couple quick errands, and a trip to Target.  
The trip to Target was a milestone for me -- I walked in without my cane!  
After a little bit, I did use the cart to lean on but still no cane.  The strange part as Alana kept pointing out - I am not sure where to place my hand.  I have walked with a cane for so long - that it felt like my left hand was missing something without it.  Not to worry - I will get used to it soon.

I may have overdone it a little; I was very worn by late afternoon.
Tomorrow, will be better I am sure.

Saturday night, I fell asleep within minutes of climbing into bed. My sleep lasted for only an hour and 15 minutes.  Then I was up until 6:30am.  Grrrrr.

Now, I should report - that my pain level is still down.  It has not been eliminated.  It feels as if someone has hit the mute button on the RSD pain.  I hurt, but there is a lot less burning, stabbing pain.

Sunday, picked up kids from religious school with Steve and proceeded to drive to Costco.  On the way over (a 10 min trip) I began to feel sick, very sick.  So ill in fact that I could not go into Costco. My family went in, and I fell asleep in the car.  After a bit, when they came out of the store and woke me I did begin to feel a lot better.

I am starting to realize that maybe the Doctor was right.  I need to take things slowly and not overdo anything.  I am going to go slow this week - or at least try to.  I have cancelled a lot of my plans for the next couple of days - as to be sure to go easy.

I feel as if I am in an awkward situation now.  So many people want to know the results of this treatment.  I can not give anyone a full report yet.  Without a doubt, the Calmare treatment does something.  It did lesson my pain, and at times almost eliminate it.  Now I just need to hope that this continues on for sometime.




Thursday, November 15, 2012

Almost done

Thursday, November 15, 2012 - Day 10 of treatment

Appointment 1:30pm

Well, I have today and tomorrow left.  As excited as I am about going home, I am nervous.  I have not gotten a full day of pain relief.  I do not want this to be for nothing.

Last night, I was able to fall asleep without being in pain - something I never believed could happen.  I slept fairly well too.  I was able to sleep a few solid hours.  Sleep is really a wonderful thing - I highly recommend it to everyone -- smile.

Today after treatment, I did a little shopping.  I am guessing that was not the best choice of activities.  I was no longer pain-free.  Although I do think the weather was playing a part in that - it looks and feels as if it is about to rain.  I went back to the hotel and rested for awhile and I did feel better.

I am packing up my suitcase with my clothes, shoes, make-up and such.  I am so hoping that when I leave this hotel room I leave with just what is in that suitcase.  I do not want to bring the RSD pain home with me.  I have decided there is just no more room for it in my life.  My suitcase is heavy enough.

My last treatment is tomorrow morning at 10:30am.  Then I will be spending time with my Aunt and Uncle before going to the airport and returning home.

I will update you all over the weekend to let you know these last days went.


Wednesday, November 14, 2012

A somewhat "normal" night...

Tuesday, November 13, 2012 - Day 8 of Treatment

Appointment began at 1:30pm

I am back to treatment by myself.  I was a little worried wondering if I would take a step backwards not having someone with me this time.
No, not the case -- Shelby (doctor's assistant) was able to start up the therapy right away and at a higher level than prior days.
Shelby kept turning the intensity up bit by bit.  I was able to much more today and I was not that uncomfortable.

What came next - is outstanding (at least to me).... I remained RSD pain free until I went to sleep.
I even slept for about 4 hours straight!  I woke up for a few hours and then was able to return to sleep.

Strange thing is I am tired - how can that be?  I slept so much better and I am tired.  That does not make sense.




Wednesday, November 14, 2012 - Day 9 of treatment

Appointment 2:30pm

Doctor is very pleased with my reports of yesterday's results.  He wanted to try to move up the intensity just a bit more today.
I was able to handle it - my knee was jumping a drop but nothing too bad.
Doctor and Shelby both happy with the progress of my therapy today.

I am hoping that the results last even longer.
I have two treatment left, thurs. and fri

I am anxious to return to my home.  I miss my family there.

Tuesday, November 13, 2012

Back to treatment

Monday, September 12, 2012 - Day 7 of Treatment

Appointment time 2 pm

I am very lucky -- today my two cousins, Ruth and Rhonda accompanied me to therapy.  The doctor was not in right away, so the assistant, Shelby (who is as sweet as pie) set me up on the machine.  I like when she starts my treatment, because she turns the machine on very gently - smile

The treatment is definitely becoming more tolerable.  My leg still shakes a bit, but no more "jumping" out of my seat.

We left treatment, went back to the hotel and played a vicious game of scrabble - and I lost!  Ruth is a scrabble shark.  We then went out for a wonderful seafood dinner.  It was not until we were leaving the restaurant, that I started to feel my knee heating up.  I quickly (and probably rudely) interrupted Rhonda and asked her what was the time.  It had been over 5 hours!!!!!

I was without pain for 5 hours - it is still unbelievable.

Last night, I even slept a bit better.  I was able to sleep for 3 1/2 hours was up for only an hour and then went back to sleep for another 2 hours.

As of right now - I am having positive thoughts.

I will keep you posted.
Next appointment - 1pm Tuesday.