Showing posts with label shortness of breath. Show all posts
Showing posts with label shortness of breath. Show all posts

Saturday, April 28, 2012

I Can Walk Three Miles Per Hour!

The Top of Hermit Gulch Trail on Catalina Island

For the last two nights I've been sure to ingest my pills, not just remove them from the bottles and leave them on the counter.  I still had some anxiety yesterday but today I'm back to feeling pretty good - which is great!

I went for a walk today that included a short incline which I haven't been able to climb for most of the last two years.  It felt amazing!  I was so encouraged that I almost started walking up one of the hills I used to walk every day.  Fortunately I stopped myself, knowing that overdoing it could set me way back.  I kept to the flat surfaces for the rest of the mile and came back feeling tired, but not exhausted, fatigued, short of breath or in pain.  In the picture above, the highlighted area is the end of a trail I used to climb on a regular basis before I became ill.  I've missed the beautiful view from the top that includes seeing the Pacific Ocean from both the windward and leewards sides of the island.  The picture below was taken on the trail near the top.  On the day this photo was taken, clouds overflowed from the windward side. 

Almost to the Top of Hermit Gulch Trail
I have an app on my iPhone, Motion-X GPS, that records my average speed (among other things) which today was 3.0mph!  I can look back at other walks I've taken in the past and the average speeds were more like 2.5 or even 2.1.  A few months ago, not long after I got the app, I tried to up my walking speed and ended up in bed for about two days afterwards, feeling horrible.

I so hope this lasts.  I'm so afraid it won't.

Thursday, April 19, 2012

Feeling Better and Better

Three Generations (that's me in the middle, feeling not-so-bad!)
Today I actually vacuumed my entire apartment (which is pretty tiny) and did some dusting!  When I finished, I was tired but not abnormally so.  I can't remember the last time I was able to do this.  

I had planned to begin taking Savella last week but I've put it off since I'm feeling so much better on just the Amitriptyline.  I wish I'd tried this a long time ago.  To anyone out there suffering with ME/CFS and/ or Fibromyalgia, give Amitriptyline a try!  It's one of the older tricyclic antidepressants (pre-Prozac) but I've read elsewhere that it was effective, so I guess I'm not the only one.

My parents have been visiting from NJ for the last month.  My mom kept happily commenting on how much better I seemed from when they first arrived (they flew back yesterday).  "You could hardly keep your eyes open" she commented on the phone today regarding the horrible state I was in. 

Could this really be it?  Have I found my holy grail?  I'm still very cautiously optimistic.  After all, I know it could be just a phase.  But in the meantime, I've been very slowly beginning to exercise again which is something I have missed greatly.  Before Fibromyalgia and ME/CFS took most of my life away, I exercised daily and was in pretty good physical condition.  I cannot say the same now I'm afraid.

On a less positive and completely different note, today I attended our small town's annual "Health Fair".  I don't have health insurance and they offer a wide variety of medical tests for very low rates.  For example, I had a bone density test, echo cardiogram and a thyroid/ kidney ultrasound for a grand total of $110!  Those tests would have cost way over a thousand at my doctor's office.  Everything came back within normal ranges except the bone density test.  The result was -2 which I discovered today is indicative of osteopenia.  Being that I just turned 39, this was a bit alarming, although it does run in my family.  My mother (who is 69 - sorry mom) has normal bone density but I once overheard a doctor describe my grandmother's bones as "chalk-like".  From what the technician told me today, bone density can be repaired by consuming more calcium but of course I'll be heading to the world wide web to check it out thoroughly.  I am so thankful though that my heart is in good condition!  I sometimes worry because when I'm not feeling well, one of the symptoms I experience is shortness of breath and the feeling that my heart has "skipped a beat" and it can be scary.

Saturday, November 5, 2011

Falling Further Down the Black Hole

My depression has reached a critical level. I don't give a crap anymore about trying a new diet, medication or anything for that matter. I haven't felt this low in a very long time. I physically feel terrible and there isn't much left in my life I have control over. I'm blessed to have a wonderful therapist who I've been keeping in regular contact with and who is closely monitoring my situation. I'm still taking about 10mg of Cymbalta per day and can't seem to lower he dose much more without suffering withdrawal.

I made the decision today that I will no longer be able to fulfill my responsibilities as manager here at the hotel. My cognitive impairment has gotten worse and worse. I spent quite a bit of time today on the phone apologizing to guests who apparently had made reservations but that I had no recollection of, or paper work on. I'm not used to making so many mistakes. I have often, in the past, held positions which required serious detail orientation, commitment and work ethic and are qualities I have always prided myself on. I guess those days are gone and hopefully only temporarily.

My marriage is seriously on the rocks and shows no sign of getting better. Now I'll be almost completely financially dependent on my husband and just the thought seems to choke off my air. My almost stubborn self-sufficiency is something I have also had pride in. There are some people I wouldn't mind having to depend on but my husband isn't one of them. I know he'll rub my face in it and it'll become a game of trade-offs. He pays for stuff so I'll have to do things for him in return. It's already that way to a large extent and will only get worse.

So, I'm not able to take care of my daughter, I'm not able to do my job and I'm not able to do things that need to be done to upkeep our home. What can I do? Not much.

I have yet to call the owners of the hotel to tell them I'll have to take a medical leave. That's going to be yet another humbling experience that I think I'll save for tomorrow.

Monday, August 1, 2011

Invisible Disease, Invisible Support System

I'm sure when my husband married me he had no idea what he was getting himself into.  To be fair I didn't either.  After the break-up of a long and loving relationship (which I've started to admit may have been a mistake) and numerous failures in the area of thirty-something dating, I met my husband.  I was newly sober after years of abusive drinking and he was living on a fishing boat.  I loved his carefree, boyish nature (red flag - I know, I know) and knowledge of boats and the sea of which I had something in common.  After a short but very passionate period of time we got married in Las Vegas.  After reaching the age of thirty-five, my life-long disinterest in having a child had started to waver.  What I was thinking when I decided to have a child with this man is any one's guess.  Neither of us had children from previous relationships so this would be a first for him also at the age of 41.  Somehow his passion and very persuasive nature got to me.  The first time I missed a birth control pill I became pregnant.  We were so excited that it had happened so fast since our ages were becoming a definite factor in our decision to become parents. 

The first indication of my husbands lack of nurturing ability started to show throughout my pregnancy.  I had looked forward to being pampered, spoiled and fussed over like I'd heard my friends husbands had.  The pampering never happened.  He was excited about the baby, but didn't seem to empathise at all with my discomfort or wish to diminish it at all.

A couple of months into my pregnancy I started to not feel right.  I wasn't throwing up or even nauseated most of the time, I just felt wrong.  As things progressed, I became weaker and weaker to the point that I couldn't stand long enough to take a shower.  I was short of breath and my muscles just didn't seem to work anymore.  I went to the doctor and she did some blood tests.  It turned out that I was slightly anemic but just fine besides.  It was just "a pregnancy thing" she said and explained that my body was undergoing severe changes.  This was hardly news to me.

After my daughter was born the weakness subsided slightly for a couple of months but then it came back to stay.  I felt like I had the flu.  My body ached and I was so tired and weak that it became very hard for me to even lift my new baby.  I won't re-hash all of the details about the ongoing discovery of my Fibromyalgia and all it's seeming unrelated symptoms since I've already done that in previous posts. 

My daughter is now seventeen months old.  I've had two brief remissions but have basically been sick since I became pregnant with her more than two years ago.  The lack of compassion my husband showed during my pregnancy has continued and become more pronounced throughout this entire ordeal.  I really have no idea what's going through his head but somehow I think he resents my becoming sick (although he would never consciously admit it) and feels like he got a bum deal in marrying me.  I've asked him so many times to help out more with things and take on more of the house hold responsibilities, but he reacts with a roll of the eyes, as though I'm nagging him.  Nagging.  That word is the biggest cop-out ever invented.  Somehow (usually) the women become the over-reacting slave drivers and men become helpless victims with the uttering of this word.  But that's a topic for another post.

If I had had any idea that I would become the victim of this terrible disease I may have thought twice before agreeing to marry my husband.  I may also have strongly considered and probably decided not to bring a child into my sickly world.  I love my daughter more than life itself and thoughts like these leave me with heavy feelings of guilt.  What the hell was I thinking?

I told my husband yesterday that it was over between us.  Our continuous fighting wears my already weak body and soul to nothing but a thread.  My husband has many issues of his own such as Post Traumatic Stress Disorder from Desert Storm and some cognitive problems of which I could never guess the source.  I've tried to be understanding to his struggles but his refusal to apologize for his actions (without being prompted)  and his defensive and often hostile reactions erase much of my empathy.  I keep thinking that I have to figure things out for our daughter's sake but at how high a cost?  My husband has already severely impeded my healing process and I have no reason to believe that anything will change.  What kind of a mother will I be if I'm unable to participate in much of my daughter's life?

I should have known better than to marry this "carefree, boyish" "man".  What the hell was I thinking??  I just hope anyone else who is afflicted with Fibromyalgia will really think about marrying anyone who may not be able to deal with the intensity of their illness.  Having a strong support system is SOOOO important.

Sunday, July 17, 2011

I'm Actually Still Here

I've been so busy recently that I haven't had time to write.  This is due in part to my recent remission from Fybromyalgia or what ever the hell it is that I have.  I started feeling so good that I was able to do things I hadn't been able to do in a long time.  I resumed my exercises and was able to really put myself into marketing the hotel for the beginning of our high season.  My efforts seem to be working so far.  I've been taking many bookings and I already have several weekends during the summer sold out.  Considering I'm paid only commission on what I sell, this is looking better and better.

I finally went to see a real Rhumatologist.  She ordered bloodwork and my ANA came back positive again.  So, she ordered more bloodwork to try to get some more details.  I got the results today.  My ANA was positive again, 1:80 with a speckled pattern.  Everything else she tested for came back negative.  She was supposed to call today but her nurse said she was seeing patients back-to-back all day.  Oh, I'm so used to this.  I would be shocked if a doctor actually called me back when they said they would.  Anyway, I've had some episodes of not feeling very well (like after my cousins from Sweden left after visiting), but I've been feeling pretty darn good. Still not back to the way I felt before I got pregnant more than two years ago, but I should be thankful for what I have now.  After all, I can walk and carry my daughter (short distances).

One of the symptoms I had been suffering with was shortness of breath.  I have to share something that has really helped me with this.  A couple of years ago I got a pair of Earth brand shoes.  I hadn't worn them in a while but dug them out of the closet a month or so ago and have been wearing them regularly.  If you're not familiar with Earth shoes I'll try to briefly explain them.  The company makes footwear using eco-friendly materials, ethically responsible methods and they're actually made in the USA.   Being the tree-hugger that I am, I was instantly attracted to the company and decided to try a pair.  The really unique thing about them is that they use a "negative heel" technology of their own invention which puts your heel 3.7 degrees LOWER than the front of your foot.  The advertisements claimed that the negative heel actually put your spine into proper alignment, easing back strain, poor posture and opening the chest up for less labored breathing.  All of these claims seemed too good to be true but happily they're not.  I'm just a hair under six feet tall so I've always had a bit of a slumping posture.  When your sholders are slumped forward it really does impact your lung capacity.  Once I started wearing these shoes again I noticed I wasn't nearly as short of breath.  The company also claims that since you're essentially walking "up hill" all the time, you burn more calories than walking with a shoe where the heel is higher like all other shoes are.  This part I can't speak to but I really recommend them for improved posture.

 

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.

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.

Monday, February 28, 2011

Things in Life Go on and on

My mom is visiting from NJ for our daughter's first birthday which is tomorrow.  Two friends of mine had planned to come yesterday to celebrate but one friend was sick and the other (who gets very seasick and is practically phobic of boats) was afraid of the predicted rough boat ride across the channel.  I was really hurt at first, thinking she (the former) was making excuses when my she called to say she wouldn't be coming, in fact we got into a big argument about it.  I don't have many friends on the island anymore and my family is on the other side of the country.  My husbands family couldn't attend due to work schedules.  So it would just be me, my mom and my husband.  We ordered a six inch cake, mostly as a photo prop more than anything else.

Yesterday afternoon, after my husband returned from his fishing charter, he very unemotionally explained that his mother had been taken to the hospital with shortness of breath, and that he was going to take the next boat to the mainland.  We've known for some time that she was ill but doctors hadn't quite pinned it down yet as a lung malignancy, CHF or COPD.  We were hoping some tests she recently had would give some answers.  My husband's father died when he was eighteen.  I'm glad his two half brothers are there with him.  He called not too long ago with sad news.  Apparently his mom has several serious chronic conditions that are inoperable, including emphysema, COPD and a leak in one of her heart valves.  I guess the doctor told them that she didn't have much time and that she was too weak to survive any type of heart surgery.  I wish I could be there with him.  He's taking it really hard and I just want to comfort him.

My husband's mother along with his half brother and his wife were just here visiting us two weeks ago.  I didn't really notice anything different about his mom but my husband and his brother thought she seemed short of breath and noticed that she had lost a lot of weight (which she could not afford to loose).  I'm so glad now that she was here to see her grand-daughter and spend time with her.  I had no idea at the time, that it may be the last time my daughter would ever see her grandma and probably the last time my mother-in-law would come to Catalina Island, a place she has loved dearly since her teen years.  When they left and we hugged, I didn't know it may have been the last time.

My husband is coming home tomorrow morning but probably leaving again the next day.  He fears his mom may only live a few days more.  I feel so selfish wanting my husband to be here for our daughter's first birthday but it's important to me for some reason especially since he wasn't there at her birth.  I know he should be with his mom though.  There will be lots more birthday's with our daughter (I certainly hope) but this may be the last chance he has to spend with his mom.  I know he's coming home for me.  Maybe I should call and tell him not to come home, that he should stay with his mom.  I'm so torn, I don't know what to do.  If he doesn't come, it'll only be me, my mom and my daughter, pretty much a non-event for her very first birthday and pathetic pictures for the family album, but really not the most important thing.  I'm so confused and sad.  I wish I could hug my husband right now.  The events of this day have seemed to magnify the the inevitabilities of life and death.  The beginning of one life and the ending of another.

Friday, February 18, 2011

Good Days and Bad Days

Fortunately, I can classify the last few days as "good days" relatively speaking of course.  I was actually able to take a walk this morning and at a somewhat normal human pace.  Now that it's evening, I'm getting the sore throat, shortness of breath thing, but no pain.  Pain isn't actually my primary complaint.  I do have pain a lot of the time all over my body but it's more like an ache.  Sometimes pain shoots through my extremities but it's never as severe as I've heard other fibro sufferers report.  My main problem is fatigue and shortness of breath.  When I'm in the midst of a flare, I can't do anything.  I can barely get up and make myself something to eat (like a sandwich even) before I'm getting light headed, starting to sweat, becoming short of breath and feeling as though my legs are just going to give out.  Walking up stairs has become a horrible experience.  My leg muscles feel so weak, I have to summon all my strength to lift them up each stair.  Unfortunately I have to ascend one and a half flights of stairs just to get to my front door.  Once I do get in the door, I'm spent.

I've been trying to eat really well.  I've been eating lots of raw fruits and veggies and cutting out as much sugar as possible.  Cutting out sugar (and other "bad" foods) is very hard for me because I have hardly any self-control.  I think I may actually have a bit of an eating disorder.  If there's a box of cookies in my kitchen, I've been known to eat the whole thing in one sitting.  I absolutely can't help myself, which is why I have very little food in my house.  I only buy what I'll need for the day or next couple of days.  I used to binge when I was a kid.  Before my mom was home from work, once I actually ate an entire box of brown sugar because there was nothing else around.  Fortunately I had a really good metabolism and stayed skinny as a rail (I wish I could still say that ).  I guess I shouldn't be surprised that I have a problem with food, being that I'm a recovering alcoholic.  I'm obviously an addict in other aspects of my life as well.  In two days I will have been sober for three years!  I can't believe it.  I never thought I could go this long without a drink.  Of course now I have a daughter which is a whole new motivation.

Wow, I really digressed from my original topic.  Anyway, I'll try to keep eating well and exercising in moderation, when I can, and hope it makes a difference. 

Now that I'm finishing this post, I'm starting to get achy and my hands are hurting, which means I should go to bed (even though it's only 9pm). Oh well, you have to take the good days, or even hours, when you can.   It sounds cliche, but that's something I learned in AA and you can apply to  your whole life.

God, grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and the wisdom to know the difference.

Wednesday, February 9, 2011

Slowly and Painfully, Realizing My Altered Existance

As I wait day after day for my doctor to call, I'm realizing that this is it.  This is my life now.  Maybe there are some pills I can take every day for the rest of my life that may subdue my symptoms but I will never be the same.  I've missed so many opportunities that I thought I would have had years to realize. Of course someday I would become unable to do things that required physical ability, if I were lucky enough to live that long, but I'm thirty-seven.  I thought I would have had more time, but that was really very naive I suppose.

Four nights a week my husband, who is a boat captain, skippers a water taxi in the harbor.  When my daughter and I visit, he often takes us for a short ride to find seals or sometimes even dolphins right outside the harbor.  Last time it was just after sunset as we motored back into the harbor.  The lights of Avalon were coming on but the mountains were still silhouetted by an ever fading purple sky.  It was painfully beautiful.  The breeze blew across my face and through my hair and my daughters fine wisps of hair danced like tiny feathers.  I started to cry silently as I realized how much I missed Perdida.  She was the 35' Allied Seabreeze yawl (and the obvious inspiration for my screen name) that my significant other and I lived on for almost four years.  I could almost see her elegant lines and teal colored hull tied up to a mooring in the harbor as I had seen her so many times before.  Tears ran down my face.  I remembered sitting in the cockpit on an evening just like that one with a glass of wine in my hand, the boat rocking gently and my feeling so lucky, that I pondered my situation almost in disbelief. 

My parents always had a boat while I was growing up.   As a child, I suffered from undiagnosed & untreated depression. The rocking of the boat and the smell of the sea air were my anti-depressants and psychotherapy I suppose.  My father had been in the Navy and then lived on boats, worked on boats, helped build boats and just loved everything about boats.  He jokingly called himself a viking, not for his love of pillaging and plundering of course, but for the sea and his Norwegian heritage.  The first boat I remember our family having was a 37' wood-hulled cabin cruiser fittingly named Valhalla, which was the name of almost every other boat my parents owned.  As a little girl I felt so safe on the boat with my dad and mom.  Sleeping in the v-bunks with my younger brother at night, our stuffed animal-filled nets swinging against the wooden bulkhead was true bliss.  Anytime I was sad or troubled, I closed my eyes and brought myself back to that v-bunk. I tried to recreate the sound of the water swishing and gurgling past as the bow split through the water, the wooden hull the only thing separating my body from the sea.  I even tried to feel the gentle motion of the wooden boat. To own my own boat and go on great sea adventures was my great aspiration from childhood and on to adulthood.   I was partial to sailing boats though, or at least I thought I was.  I had never actually sailed on a sailboat. 

By the time I'd graduated college and joined the rat race I'd read almost every cruising book I could get my hands on.  From Francis Chichester's account of the first solo Around the World race, to "Managing 12 volts", I'd read and studied them all.  I lived in New Jersey but worked for a software development company in Mid-town Manhattan.  I had a one hour train ride each way and I used my time wisely by reading. One particular moment stands out in my mind for some reason.  I was reading Beth Leonard's "Cruising Handbook" on the train ride home, when I looked out the window to see the graffiti covered brick walls of one of the many factory building that lined the tracks.  In my heart I thought "I'm really gonna do this! I'm gonna sail outa here!".  A shiver of fear or anticipation ran through me that I'd never felt before.

In addition to all my reading, we had taken lessons, gotten our American Sailing Association Certifications, and Chart Navigation Certifications.  My significant other and I went to SailExpo every year in Atlantic City, attended all the seminars and took serious notes.  We really felt that we were ready for the next big step.

After a couple years of preparing we bought a boat.  Perdida.  She was more than we wanted to spend, but we fell in love with her instantly.  She was a classic beauty.  The day we took ownership I had a paralysing panic attack.  This, a time of total confusion and terror like I had never felt, was merely a glimpse into my near future, when I would be absolutely tortured by anxiety and panic for the next two years.  But that time in my life could fill a book by itself, so I won't start that story here. 

After two years of sailing Perdida in NJ and NY waters, we had Perdida's masts unstepped and loaded her on a huge truck to be shipped across the country to Newport Beach, California.  The plan was, from there, to sail her to Hawaii which we figured conservatively to be a twenty-two day sail in open ocean  After a couple years of living on Perdida in Avalon and Two Harbors and never being on the same page about anything, we broke up.  He's living in Hawaii now and I'm still here on Catalina.  It's another story I won't digress into now.

I wanted to tell my story that led up until now to try and convey the great amount of energy and self that was spent on this endeavor.  I wanted to emphasize how much of my being was completely consumed in order to achieve this purpose.  My boat meant everything to me and had become a part of me.  I realized one day that I had subconsciously anthropomorphised her into a creature that I lived inside and that protected me and loved me.  The day I watched her sail out of the harbor without me, broke my heart into so many pieces that I cannot put them back together. I cannot let go.  Perdida represented my future, and now I feel I have none.

Now I know that my chance has passed.  I could  never sail a boat now, I can barely walk up a flight of stairs.  I'm still coming to terms with the profundity of this disease, mourning the life I could have had but is now impossible.  My life has lost a dimension.  Every day is spent in my apartment with my daughter and my husband if he's not working.  I can go out once a day if I'm up to it and walk as far as the pier before I start feeling too weak.  Then it's back home to lay on the couch dripping with sweat, short of breath and hurting everywhere, to recover from my adventure.  The occasional phone call or winter hotel guest to check in, just makes me have to move when all I really want to do is lay down and sleep.  I've been repeating this dreary routine every day for the last six months, which feels like years.  I could never hold down a "real" job.  I really don't think I could do it.

I found out today that my doctor won't be back in the office until the 14th.  So nice of her to return my two calls and note before she left.