Monday, March 21, 2011

Me and the Sea

The following is a piece I started writing in 2002.  I've posted it now as a (very long) prologue to my next post:

From as early as I can remember, the sea has played a huge part in my life.  As soon as we were able to hold up our heads, my younger brother and I spent every spring, summer and autumn on our parents 36’ Colonial - "Valhalla", a beautiful wooden 1960’s cabin cruiser.  In the late winter and spring we “helped” our parents’ as it took many full, tiring weekends for them to prepare Valhalla for launching.  My father would replace rotted planks and caulk, repair the diesel engine and an endless list of other tasks.  My mother scraped, sanded and painted the hull and interior from stem to stern, she sewed curtains, cushions & sheets for the bunks.  My brother and I made friends with the other children in the boatyard and we all ran among the dirt piles and chased after hermit crabs in the mud. 

When Valhalla was finally afloat, we spent summers and autumns in various anchorages in New Jersey's Raritan Bay or cruising up the Hudson River, Long Island Sound, Fire Island, Block Island, Cape May and so many other places.  We were all in love with the sea and my father who is of Norwegian descent, claimed it was in our blood.  Sometimes during storms, my brother and I would crouch snuggled together in a corner of the salon, scared and begging our father to turn the boat around.  But he and my mother would reassure us that we were safe, and we knew deep down that we were.  Some of my fondest memories are of sitting on Valhalla's fly bridge, my father standing at the helm, gripping the classic wooden spoked wheel with a grin ear to ear, his dark brown hair blowing in the wind and his eyes tightly squinted in the sun.  As we climbed up waves and surfed down them my father would yell "WOOO HOOO" as though he were a child on an amusement park ride.  I took for granted his ability to fix anything that went wrong or broke down and to steer Valhalla through storms and fog without a hitch.  As a child, he seemed part magician part Superman.  I would lean my head against the rail with such contentment and become hypnotized by the brown foamy water gurgling by the hull (this was during the 1970's before they realized that dumping raw sewage from NY City into the harbor and bay was not such a great idea). 

The smells and sounds of Valhalla gave me such comfort.  During winter, while snuggled in my bed unable to sleep, I'd try my hardest to recreate the sounds of the water swishing past the hull as my brother and I heard it from our bunks in the bow of Valhalla.

In 1984 my father was forced to sell Valhalla due to engine problems that were too expensive to fix.  My brother and I had gotten to the age where we were getting involved with school activities and sports and had begun to take Valhalla for granted.  We didn’t really understand what we were losing until she was gone.  Valhalla had always been there.  She had been a part of our lives, almost a family member.  I remember crying alone after my father told us she had been sold.  He sold her for $500 because her engines didn’t work, and with the advent of fiberglass, no one wanted to do the work involved with owning a wooden boat. She was probably bought for scrap but my father never told me and I'm glad he didn't.   Losing her was a very sad day for our family.  We had made so many memories within her bulkheads.

For 5 years our family was boatless.  We tried going to the beach in the summer to be near the ocean we missed, but somehow it wasn’t the same.  Looking out at the sea from the shore was entirely different from floating atop it.  In 1989 my father was able to purchase an older, used 27’ Bayliner express cruiser.  The joy was back!  It was as though we were picking up from where we left off.  My parents planned trips and again, my brother and I cruised the places of our childhood, now as young teenagers.  As time went on, my parents sold the Bayliner and bought a 36’ Regal express cruiser.  By this time, my brother and I were in college.  Our lives were beginning to take their own paths, but we never passed up the opportunity for a family cruise or just a weekend in Horseshoe Cove.  My family was so happy together on the sea.

I adored my parents’ boat and being out on the sea, but from a young age, I remember staring longingly at the boats in the bay heeled over on their sides with white sails billowing in the wind.  When my brother and I were very young, an older, single man lived on a beautiful wooden sailboat in the dock next to ours.  We became friends and when he invited us aboard, the oil lamps, round brass port holes, gimbaled stove and shiny varnished teak struck me as one of the most beautiful things I had ever seen.  I knew nothing of sailing at the time, but hoped  I would learn one day.  I was fascinated by how fast the wind-driven hulls glided through the water without an engine and as I got older and more concerned with the environment, I loved the idea that they were utilizing a natural resource rather than polluting the air and water.  I had never even been on a sailboat while under sail but their pure elegance drew me in.  I imagined being out in the open ocean, no land in site, sails flying and salt spray on my face.  I began to feel a deep urge to travel the world's oceans on a sailboat.

My life continued to take it’s own course.  Immediately after college, I got married and my husband Rob and I moved to Highlands, NJ a small fishing town on the New Jersey Shore.  I loved living by the ocean, and took every opportunity to walk on the beach after work or on weekends.  My little dog Happy also loved romping in the waves and sand on a hot day and chasing the sea birds.  My husband knew of my dream and thought it might be a good idea, but maybe when we retired.  I was disappointed, but figured I would learn as much as I could about sailing in the meantime and maybe get the chance to crew on someone else’s sail boat.  After all, my older brother had just purchased a 37’ Endeavor sloop.  Rob and I went to Sail Expo in Atlantic City each January and drooled over the shiny new sailboats, but the dream of sailing into the sunset was a long long way down the road.  Rob was more focused on his career.  I continued to work at my crappy low  paying job, all the while wondering what I was really meant to do in life. 

My marriage, for many different reasons, didn’t work out.  Rob and I split up in August of 1999…our 3rd anniversary.  It was the most painful thing I had ever endured.  I was plagued by extreme anxiety, depression and insomnia.  I lost weight and started wondering what about life made it worth living.  I moved back in with my parents and my dream all but disappeared beneath a shroud of apathy and darkness.  My only priority was making it through each day without drinking too much or eating too little.  The thought that I could even drive to work and back each day seemed an almost insurmountable task.

As time went on, my deep wounds began to heal and scar over.  With the help of medication, my anxiety attacks and depression lessened.  I began to look farther into the future than just that day.  Slowly as I felt my emotional state stabilizing, my sailing dream peaked its way from underneath the shroud and started to occupy more of my conscience again.  It was still a far off dream though.  I could never afford even an old beat up boat, and I didn’t want to do it alone anyway.  I told myself to be patient, that someday, my dream may manifest itself.

Then I met Mike.  On the first day we met, through a mutual friend, I mentioned something about wanting to sail around the world.  His eyes lit up and he yelled “ME TOO!”.  We started dating and as time went on, our plan began to take shape.  We would buy a boat, spend a year or so learning to sail it, then take off for Hawaii.  It was ambitious and a bit foolish in retrospect, but we were on a mission.  I had never felt such a purpose in life.  We took sailing lessons and read every book and magazine we could get our hands on.  We went to SailExpo and attended as many seminars as we could fit into our schedule.  My excitement was at a level I had never felt before.  It seemed as though every decision we made revolved around our plan.  It was all we ever talked about.  It was all I thought about.

We searched the boat classifieds and looked at a couple of “wrecks” when we finally saw Perdida, a 35’ 1972 Allied Seabreeze Yawl, for sale on the Internet.  She was absolutely beautiful.  Touted as a sturdy off-shore cruiser and a classic, we were anxious to see her.  When we finally traveled to Port Washington, NY on Long Island to see her, we fell in love at first site.  She was a bit over our price range, but she was structurally sound and had been kept in pretty good shape especially for her 30 years.  It was possible that she may have been one of the beautiful sailboats I had admired as a child in the 1970's.  She was one year older than I was.

It was January, and we put a deposit down on her.  I had never been so excited.  I couldn’t sleep at nigh,t barely able to believe that my dream, our dream, was actually happening.  Images of Mike and I anchored in tropical anchorage’s around the world flashed through my head like a slide show on high speed.   I continued to read all I could.  I wanted to be an expert on everything.  I made lists of repairs we would need to make and researched on the Internet how others had gone about doing them.  We joined the Allied Seabreeze Owners Association and took advantage of the organization's vast knowledge of Seabreezes.  I read many books about the cruising lifestyle and some of the stories intimidated and even scared me.  I knew that there would be some really bad and scary times, after all, I had experienced some pretty scary times out on the sea, and although they paled in comparison to some of the stories I read, I was confident that I had a solid basic understanding of the sea from which to build upon.  If I were going to be afraid of the ocean, I would certainly have known it by now.  We began buying some of the equipment we would need.  Especially charts of the Long Island Sound, NY for sailing Perdida down to her new home in Monmouth Beach, New Jersey.

I’m not sure when the transition actually took place.  I can’t remember it happening at a distinct time, all I know is that the reasons for my sleeplessness changed from excitement to overwhelming panic.  I started having vivid nightmares about violent storms at sea and survival situations.  I thought in my head “this must be what everyone goes through when they are faced with a change in lifestyle,  I’m just having normal anxiety.  It should go away in time.”  The nightmares got worse not better.  I would wake up sweating and shaking in fear.  I couldn’t go back to sleep.  As time went on, the anxiety level increased during my waking hours as well.  I found that I couldn’t think about anything else.  I imagined every catastrophe that could possibly happen on a sailboat.  The peaceful images of us anchored in a tropical lagoon were gone.  They were replaced with images of a sinking boat, 40 foot breaking waves, the mast snapping off and worse, Mike being knocked unconscious and falling overboard.  I began to question myself like I never had before. "Maybe I wasn’t cut out for this.  This was too intense.  I’m too much of a mental case, after all, I’ve suffered with Major Depression since childhood."  My excitement and faith in myself all but disappeared.

Soon my anxiety began to seep its way into other aspects of my life.  I was having a hard time at social gatherings.  I felt inadequate and never knew what to say to anyone.  Conversation was such a struggle that I began to fear holiday and family times.  I made excuses for missing dinners and gatherings and self-medicated with lots and lots of chardonay.

We sailed Perdida down from Port Washington in April of 2002.  My father and I took the train to NYC then the Long Island Rail Road to Port Washington where Perdida, our new boat, was docked.  I was definitely in a state of panic, but my father was there and that made me feel slightly more at ease.   The night before we set sail, I had a full blown panic attack on our newly purchased dream boat.  I shook and cried uncontrollably.  I felt like my life was completely out of my control. Why was this happening to me?   I couldn’t stop crying and shaking.  My heart felt as though it would pound out of my chest, and even the sight or mention of food made me nauseated.  Mike tried to comfort me, but he didn’t know what to do or how to help me.  I can’t remember ever feeling so terrified.  I didn't know at the time, but that horrible out of control feeling was about to become the thing that would rule my life for the next few years.

What was happening to me?  Why was my brain so out of control?  How could I go from being so excited and confident to shaking and terrified?  Even being on my parents' boat, something that had always been so comforting, was giving me anxiety.  I was becoming deathly afraid of the one thing I had always loved and taken comfort in - the sea.  How could this be happening? 

I began seeing my therapist again after not having gone for over a year.  I was put on a different type of anti-depressant, one that had shown positive results in those experiencing anxiety.  I was also given  Ativan, a sedative, for the severe attacks.  We explored my problems in therapy.  There were many times I just wanted to give up the dream…give up the boat.  It was just too painful, too torturous.  Somehow, weekend after weekend; I summoned the strength to go out on the boat even though it was like a horrible form of torture.  I took the tranquilizers and talked myself out of most of the bad attacks, but some took a hold of me and I just couldn’t shake them loose. 

One afternoon Mike and I were getting ready to back Perdida out of the slip to go out for a day of sailing.  He was at the helm and I was on the bow to throw off the dock lines.  Suddenly, I was hit with such a severe sense of panic that I became paralyzed.  My vision became so blurred, I could barely see.  I was so light headed, I thought I would pass out.  It’s hard to explain what was going through my mind.  The only words that come to mind are primal panic.  Panic so strong that I thought I was going to die any moment.  I have heard that when a person is in a life threatening situation, their "life flashes before their eyes", if you'll excuse the cliche.  Although I have never realistically been in a life threatening situation, I imagine what I felt was similar.  Images of death and catastrophe flashed through my mind and I could hardly breathe.  My heart was pounding and my hands were shaking violently.  Mike was yelling to me from the helm but I couldn’t move.  “What are you doing ?” he yelled repeatedly.  Finally he re-tied the stern lines, shut off the engine and walked up to the bow.  I was still clutching the bow line tightly in my hand.  He tried to take it out of my hand but I held it tighter.  I was scared to death to let it go.  Why?  Well…..that’s the question I have never been able to answer.  I spent the next few months trying to figure it out.  An explanation alluded me, and still does.  Obviously it had something to do with my fears about sailing or the ocean, but what exactly?  Why now?

I continued to force myself to go to the marina almost every weekend.  Every time we left the dock or even talked about leaving the dock, the anxiety kicked in.  I tried to make excuses for why we shouldn’t go out.  Mike was very supportive and tried gently to force me to confront my fears.  As the summer went on, my fears ebbed and flowed like the tide but were always there under the surface if not right out in front.  As we experienced more things, my fears became less irrational sometimes, but they were always there, holding me back as though I were lashed to a tree.

After having her transported by truck, Mike and I are now living and cruising on Perdida in Southern California and planning our Hawaii trip in April or May of this year.  I still haven’t given up the dream, although it has been the hardest thing I've ever lived through (yes, even harder than the divorce).  I am still dealing with the disappointment I feel towards myself and the feeling that I’ve let us both down.  I have been very humbled.  How could I have been so arrogant to think that all of my dreams would happen without hard work and even pain and suffering?  The real lesson here is that when something is really important maybe it shouldn’t come easily.  By working hard for something or someone, only then does it become a real part of who you are.  The suffering is the real gift if you can learn to accept it as such.  It is the everyday journey you take in life that defines you as a person, not your final destination.

Sunday, March 20, 2011

Frustration Mounts...

Tuesday was my much anticipated doctor appointment.  The visit was anticlimactic to say the least.  I shouldn't have been surprised, I wasn't actually.  I expected nothing and that's almost what I ended up with.  When I finally got to see the doctor (after sitting in the exam room for close to an hour and while my very cranky one year old tried to open every drawer in the room) she apologized for not having returned my calls.  She explained that the rhumatologist she consults with had been "out of the office" for the last two weeks and promised she would call him as soon as he were back in the office.  I told her I had been feeling worse and worse and asked if she could prescribe one of those fancy new drugs made specially to treat fibromyalgia.  I was so desperate for some relief.  In the past we'd ruled these drugs out due to their prohibitive cost, but I didn't care anymore, I had to do something.  If I had to, I'd cash in my 401K.  She agreed and prescribed the new drug Savella.  She promised she would call as soon as she spoke to the rhumatologist and that she would fax the prescription to the pharmacy.

A couple of hours later I walked to the pharmacy to pick up the prescription.  After checking with the Pharmacist, the cashier told me that they hadn't received anything from the clinic for me.  I sighed deeply and walked out the door while dialing the clinic on my cell phone.  My doctor wasn't available, of course, so the receptionist said she would leave a "call back".  I waited all day and even called again but never received a call.  The next morning I started calling again.  The receptionist at the clinic was shocked of course that the doctor hadn't called me back and swore she'd given her the message.  She was with a patient but the receptionist promised to "grab" her as soon as she was finished.  Later in the day someone finally got her to fax the prescription.  When I called the pharmacy they said they had received the prescription but that they didn't have Savella in stock.  They'd ordered it and would have it the next day.

The next day I called the pharmacy and they said the prescription would be ready around noon.  I picked it up at one, then my husband and I took our daughter on the glass-bottomed boat to see the fish which she absolutely loves.  My husband held her, carried her and pushed the stroller since I wasn't able to.  Afterwards, my husband saw a sign at a restaurants advertising a corn beef sandwich lunch special.  Since it was St. Patrick's Day, he decided he had to have one.  While he was eating I started reading the literature that came with the prescription.  About halfway through the first page, bold and in all caps it read "DO NOT take this medication if you are also taking an SSRI".  Shit!  I'm taking 200mg of Zoloft per day which is an SSRI.

After lunch we went back to the pharmacist and asked him about the conflicting drug interaction.  His opinion was that I shouldn't do anything until talking to my doctor.  Holy shit!  Was I an unwitting subject on some sick version of Candid Camera or something?  Could this really be happening or was it just another of those fibro induced nightmares I live through every night? 

We went back home and I got on the phone yet again.  I begged the receptionist at the clinic to please have my doctor call me right away.  The staff at the clinic must have thought I'd lost my mind or something. After all, how could so many things possibly go wrong day after day?  They again promised they would tell the doctor that she needed to call me and I thanked them for being patient with me and reiterated that I knew none of them was to blame.  I waited all day again and received no response. 

At this point I was so beaten down that I just cried.  Of course this made my fibro flare up even more.  My husband was so angry he was ready to kill someone.  I felt completely ignored and insignificant.  Was I just going to have to live like this for the rest of my life; like a cripple?  I waited another night, trying to be as patient as possible.  The next morning I called the clinic and demanded to speak to my doctor.  "I have to speak to her today...period."  I hated being a bitch but this was clearly out of control.  I was really suffering and my own doctor wouldn't even return my calls.  Finally, about an hour later she called.  "What's going on?" she asked seeming at first surprised at my desperation.  I told her about the drug interactions and she seemed confused.  She said she would have to research it and call me right back.  She did actually call back in about 20 minutes and told me not to take the Savella.  Since I had been doing so much research on the web, I suggested that I switch to a tricyclic antidepressant that had been shown to be more effective with fibro patients and that I would also be able to take the Savella at the same time.  She agreed but didn't know how slowly to titrate me off the Zoloft so she would check with her psychiatrist friend and call me back.

Who knows when and if she will call back.  Basically I'm no further ahead than I was before the doctor appointment.  I seem to be building an immunity or something to the drugs I am on because I'm feeling worse and my sleep disturbances are returning.  Last night I had nightmares about crushed baby skulls and many other terrifying scenarios.  I also spent most of the night awake on and off.  I slept on the couch so as to not disturb my husband.

Saturday, March 12, 2011

So Very Sick and Tired

I feel absolutely horrible today.  I know my husband is growing tired of my being sick all the time but I'm so hurt by his apparent apathy.  I realize it must be hard to live with someone who's unable to do things she used to be able to, or things most anyone else can do for that matter.  He just can't seem to get it through his head that it's my body and mind that are suffering.  I think he's more upset about my not being able to do house chores or take care of the baby more than he is about my suffering.   I'm  starting to think that if I can't find a way to manage this disease he'll get sick of having to do house chores and not having sex when ever he wants because I'm in too much pain or too weak, and leave.  I know he'd never want to be away from is daughter who he loves more than life itself so I can foresee a painful custody battle (that I can easily win) and my moving back east to be near my family who will actually help me and care for me.  Then he can go find some slut who will have sex when ever he wants (which is always).  Is the man I married really that shallow?  I find the thought crossing my mind more and more and it hurts when it does.  This disease is going to ruin my life on so many levels.  My doctor doesn't return my calls and my husband thinks I'm a hypochondriac or something.  I don't know what he really thinks because he won't talk to me.  He doesn't know how to talk to me or anyone for that matter.  How can I be so depressed when I have so many antidepressants coursing through my veins.  I can't stop crying. 

I'm supposed to have a doctor appointment Monday.  I feel like a broken record or more like a fool.  I sometimes think I'm the victim of a cruel lab experiment.  How long can we string her along before she completely looses her mind.  If that's the case, the experiment may soon be over.  Especially if it destroys my marriage.

Thursday, March 10, 2011

So Much for Tijuana

I've visited what seems like millions of "Medical Tourism" websites and haven't had any success.  I emailed the facility in Tijuana and I got a reply which implied they could help me.  I started to feel encouraged but a bit apprehensive, after all Mexico isn't the safest place to travel these days.  I did a search for reviews of the place and I only found one which was terrible. I found some other agencies and emailed them for information but all of the replies read that they were very sorry they wouldn't be able to help me.  It seems that most of the medical tourism agencies only do business with facilities who specialize in major surgeries or cosmetic surgery.

I was supposed to have had a long overdue doctor's appointment yesterday.  I never did get a response from my doctor after leaving two messages and a note.  I called the day before my appointment and left yet another message.  I wanted to know if she had contacted the Rhumatologist as promised during my last appointment which was about a month ago.  If she hadn't, then there would be no point in my coming in and paying $77 for an office visit.  Someone from the clinic called yesterday morning to say that my doctor had not spoken to the Rhumatologist because he had been "out of town" but was due back that day.  She had planned to call him later in the day, so there was no point in my coming in until she had spoken to him.  I made a new appointment.  So I wait in weakness and pain for another week.

This has been a hard week.  I've been particularly weak and short of breath.  My shins and forearms have been very sore, actually every part of my body has been sore.  I'm feeling depressed and discouraged.  I don't know what to do.  Thank goodness I have my crochet, something I can do laying down, or I would probably go insane.

Monday, March 7, 2011

Sitting With Old Men and Pigeons

Today my husband took care of our daughter and gave me a "day off".  Of course it wasn't really a day off because I used the time to catch up on hotel and personal business.  I went outside at one point to check the mail (we don't have mail delivery here so we all have PO boxes).  It was a really windy day, actually a gale, but sunny and a pleasant temperature.  I would have loved to go for a walk but being that I'm too weak these days, I sat down on a bench near the ocean and watched people walk by.  There were a couple of old men sitting on benches nearby also.  I felt like I too was old.  A couple acquaintances stopped for a quick chat, but eventually continued on.  Finally I got up and started home although I had to stop once more from fatigue before getting there.  My legs just don't work well anymore.  The muscles just burn and begin to give out.

Sunday, March 6, 2011

Next Stop... Tijuana

My husband's mother has been stabilized and discharged from the hospital.  She's staying with one of her sons until she's well enough to go home, so my husband has spent several days on the mainland with her.  My mother has been visiting and was able to help me care for my daughter as well as help with housework while my husband was gone.  I realized suddenly that if my husband were ever gone for an extended period of time, I wouldn't be able to care for our daughter alone in my current condition.  After my mom left yesterday I started seriously thinking about having to move closer to my family.  I thought with profound sadness that I may have to leave this island that I love so much and move back to NJ, a place I do not love, even though I was born and raised there. This notion filled my heart with such sadness that I cried.  I don't know how I would mentally survive such a move back to the Gotham City gloom that is New Jersey.

I have an appointment with my doctor next week.  If she gives me the same run-around, I'm moving on to plan B.  I've found a treatment center in Tijuana that specializes in fibromyalgia, chronic fatigue, etc.  I cannot afford treatment in the US anymore.  I had started researching treatment in other countries through the somewhat new field of  "Medical Tourism" when I discovered the treatment center in Mexico.  I've emailed them for more information.

Wednesday, March 2, 2011

I Can Hardly Lift My Baby Girl

My cousin, who I haven't seen in fifteen years, is visiting us for two days.  We've been doing a lot of catching up.  She's been telling us about her adventures hiking all over the world and mentioned wanting to do some hiking while she was here on the island.  I gave her a hiking map and sent her on her way.  She hiked the trails I used to hike regularly but haven't seen the summits of for over a year.  I said that I'd love to go with her but that I'm not able to since Fybromyalgia took over my life.  I don't know if she really understood but she acknowledged what I said and went on her way.  I went home to take a nap since I'd overexerted myself big time walking as far as I had.  I viewed her pictures of the Pacific Ocean from the other side of the island when she got back and I knew I may never see those views with my own eyes again.

My husband is back for a few days before he returns to the mainland to take care of things with his mom.  She's out of the hospital but not doing very well.  I suppose they're just trying to treat her symptoms and pain now.

I took my daughter to the doctor today for her one year check up.  My mom, who is visiting from NJ, came with me since I am unable to pick my daughter up and carry her for any length of time.  My mom carried her into the exam room and to the scale to have her weighed.  I felt like and unfit mother.  I can barely take care of my own child.  When I found out she'd only gained 1.75 pounds since her last check up three months ago my heart ached.  The doctor said she was still within average limits but I felt negligent anyway.  I'm beyond frustrated.  Will I ever be able to live again?