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.
This is the story of my very frustrating journey through the debilitating and mind-boggling world of Fibromyalgia, ME/CFS, Autoimmune Disease, Depression and more.
Monday, February 28, 2011
Thursday, February 24, 2011
One Year Later
In four days my daughter will be one year old. In some ways it's been the shortest year of my life but in some ways it's been the longest. Time spent in pain and sickness goes very slowly. It will also be the unofficial one year anniversary of the intrusion of Fibromyalgia into my life. I think I was symptomatic during my pregnancy too but my doctor just kept writing my intense fatigue off as "a pregnancy thing".
Speaking about my doctor, she has yet to respond to my calls and note. It's been about three weeks now. I made an appointment with her for my daughters one year check-up on March first so she'll have no choice but to talk to me then. My doctor is really a very compassionate dedicated person as well as a skilled physician but working in a small island clinic can be overwhelming for even the best doctor. I think there are only three doctors in the clinic and they are expected to be on-call in the ER on alternating weeks. I guess I'll give her a pass this time.
In the meantime I'm doing ok. As I type this, the joints in my hands are throbbing with a dull pain. I did a really easy Yoga routine this morning. I think it helped a bit. The stretching felt good if nothing else. The fatigue seems to be a tiny bit better this week. Maybe my new healthier diet has something to do with it but it could be a coincidence.
I watched the film Sicko by Michael Moore a few days ago. Wow. I knew about many of the issues covered (regarding the heath care system in the US) but I was still shocked to see how so many lives had been ruined or even had ended due to the criminal system we have which puts money before the health of the citizens of our country. Anyway, I'll get off my soap box for now because I could go on and on. The film got me thinking, it showed actual health care facilities in other countries (France, Canada, Cuba, etc) and spoke with their doctors and patients. The care the patients were receiving was much better than I've ever gotten. In some cases the doctor even visited his patients at home after a procedure. An inhaler canister a US patient in the film paid $120 for (2 per month) was the equivalent of $.05 in Cuba. I was shocked! Why do we allow this exploitation!?? I don't understand (oops stepped up on the soapbox again for a minute - sorry).
I have a friend who just returned from Colombia where she had several very complicated oral surgeries that were going to cost over $100,000 in the US. The final cost for the Colombian procedure, her housing while she was there (two weeks) and airfare together cost only 1/4 the amount it would have cost in the US. Not to mention she was very happy with the work that was done and kept remarking about the kindness of the people there. You can actually hire a sort of "travel agent" to set up procedures for you in other countries including arranging flights, transportation while you're there and housing. The total cost is much less than it would cost in the US and many times the care is better.
If my doctor keeps giving me the run-around, I'm seriously thinking about going to another country to get treated. I'm going to research it for sure.
Speaking about my doctor, she has yet to respond to my calls and note. It's been about three weeks now. I made an appointment with her for my daughters one year check-up on March first so she'll have no choice but to talk to me then. My doctor is really a very compassionate dedicated person as well as a skilled physician but working in a small island clinic can be overwhelming for even the best doctor. I think there are only three doctors in the clinic and they are expected to be on-call in the ER on alternating weeks. I guess I'll give her a pass this time.
In the meantime I'm doing ok. As I type this, the joints in my hands are throbbing with a dull pain. I did a really easy Yoga routine this morning. I think it helped a bit. The stretching felt good if nothing else. The fatigue seems to be a tiny bit better this week. Maybe my new healthier diet has something to do with it but it could be a coincidence.
I watched the film Sicko by Michael Moore a few days ago. Wow. I knew about many of the issues covered (regarding the heath care system in the US) but I was still shocked to see how so many lives had been ruined or even had ended due to the criminal system we have which puts money before the health of the citizens of our country. Anyway, I'll get off my soap box for now because I could go on and on. The film got me thinking, it showed actual health care facilities in other countries (France, Canada, Cuba, etc) and spoke with their doctors and patients. The care the patients were receiving was much better than I've ever gotten. In some cases the doctor even visited his patients at home after a procedure. An inhaler canister a US patient in the film paid $120 for (2 per month) was the equivalent of $.05 in Cuba. I was shocked! Why do we allow this exploitation!?? I don't understand (oops stepped up on the soapbox again for a minute - sorry).
I have a friend who just returned from Colombia where she had several very complicated oral surgeries that were going to cost over $100,000 in the US. The final cost for the Colombian procedure, her housing while she was there (two weeks) and airfare together cost only 1/4 the amount it would have cost in the US. Not to mention she was very happy with the work that was done and kept remarking about the kindness of the people there. You can actually hire a sort of "travel agent" to set up procedures for you in other countries including arranging flights, transportation while you're there and housing. The total cost is much less than it would cost in the US and many times the care is better.
If my doctor keeps giving me the run-around, I'm seriously thinking about going to another country to get treated. I'm going to research it for sure.
Tuesday, February 22, 2011
Happy Birthday to Me! Three Years Sober!!
I can hardly believe I haven't had a single drop of wine in three years!! My life has done a complete 180. Of course, now I'm married and have a daughter which is a huge change in and of itself but even before my daughter was born, sobriety had completely changed my life. After I quit drinking, I enjoyed waking up in the morning and actually feeling good. I wasn't getting chronically sick and didn't have to mentally beat the crap out of myself every morning for doing again what I had promised myself I wouldn't do. Whole portions of my week became a blur or disappeared from my memory completely. For example, a friend would call to say she'd just bought tickets to "the show". Not having a clue what she was referring to, I'd ask subtle questions trying to piece it together. Apparently I had agreed to attend some event when I was drunk but had blacked out and had no recollection of the conversation. I had to check my cell phone's call log in the mornings to see who I had "drunk dialed/text" and therefore how late I'd been out and where or with whom. Friends were becoming angry at me for being unreliable.
So now I'm reliable, stable ...and boring. I would never mention this at an AA meeting but there have been, for me, some negative aspects of becoming sober. Let me first emphasise that I don't want to in any way imply that I regret becoming sober or discourage anyone from becoming sober. Sobriety IS the right choice if you're an addict. It's the only choice for survival.
As one who suffered with depression since childhood, I was never confident being around other people, in fact I didn't really want to be around people. I also have many anxiety issues and a tendency toward agoraphobia that I acquired in early adulthood. This combination leads to a somewhat solitary life with very few, but good, friends, people I can really trust and have known for a long time. Many of my friends were big drinkers of course, being that I spent a good deal of time in bars. I don't go to bars anymore and on the rare occasion that I do with my husband, I can tell my old friends feel awkward around me. After all, I don't act like the same person they knew and they just don't know how to relate to me anymore. I was a fun drunk. I danced, sang and told everyone I loved them. I endeared myself to a lot of people and was everyone's best friend. The sober me is almost the complete opposite. I walk with headphones on so I won't have to talk to anyone and when I'm somehow cornered into having a conversation, it's very uncomfortable unless I know the person really well.
As an unfortunate result of sobriety, I have become very lonely. My job and home situation only exacerbate this feeling. I manage a small hotel which is also where I live. This allows me to take care of my one year old daughter which is a mixed blessing. On the positive side, I'm able to raise my daughter myself and not have to pay for childcare. The troubling side is that all of my "worlds" are blended together. I can be bathing my daughter when the phone or doorbell rings. I can't leave her alone in the tub so I have to ignore it. On the other hand, I may be on the phone taking a reservation while my daughter is screaming in the background, which isn't very professional sounding to the person on the other end of the line. Then there's the housework. My husband seems to think that since I'm "home" all day I should be responsible for doing the laundry and cleaning the house. He doesn't seem to get the fact that I'm doing two other jobs at the same time as well. Anyone who doesn't think childcare is a full time job has never tried it.
I sit here in my apartment day after day just me and my daughter, leaving occasionally to check our mailbox or pick-up something at the market. If I'm lucky, my husband is home and I can go out alone. If he isn't home, I have to be feeling well enough to carry my daughter and her stroller down two flights of stairs, then walk to the post office or anywhere else I want to go. Of course while I'm at "home" I'm answering the hotel phone, checking people in and out, dealing with the housekeepers, compiling the monthly financial and occupancy records, ordering supplies and dealing with any other catastrophe that may arise. For example, last week our hot-water heater sprung a very large leak and needed to be replaced. I had to beg a mainland plumber to come over to fix it. He finally agreed and had a new hot water heater put on a barge that was headed to the island. (We do have plumbers on the island but they're usually so busy they don't even return your calls.)
The best friend I had on the island moved to the mainland and doesn't come over very often so basically I have no friends here. One of my good friends was (and has been) trying to get sober for years but keeps going back out ("falling off the wagon" for those non-alcoholics). I couldn't hang out with her anymore because I never knew if she was sober or not and I couldn't handle the back and forth of it. Basically the only social life I have is the occasional AA meeting.
So, for me, there are definitely some negatives to becoming sober, but I don't regret it for one second. I had to do it. Mine is a unique situation that leaves me lonely and overwhelmed at the same time, but also happy to be able to spend so much time with my daughter.
Anyway - HAPPY BIRTHDAY TO ME!!!
So now I'm reliable, stable ...and boring. I would never mention this at an AA meeting but there have been, for me, some negative aspects of becoming sober. Let me first emphasise that I don't want to in any way imply that I regret becoming sober or discourage anyone from becoming sober. Sobriety IS the right choice if you're an addict. It's the only choice for survival.
As one who suffered with depression since childhood, I was never confident being around other people, in fact I didn't really want to be around people. I also have many anxiety issues and a tendency toward agoraphobia that I acquired in early adulthood. This combination leads to a somewhat solitary life with very few, but good, friends, people I can really trust and have known for a long time. Many of my friends were big drinkers of course, being that I spent a good deal of time in bars. I don't go to bars anymore and on the rare occasion that I do with my husband, I can tell my old friends feel awkward around me. After all, I don't act like the same person they knew and they just don't know how to relate to me anymore. I was a fun drunk. I danced, sang and told everyone I loved them. I endeared myself to a lot of people and was everyone's best friend. The sober me is almost the complete opposite. I walk with headphones on so I won't have to talk to anyone and when I'm somehow cornered into having a conversation, it's very uncomfortable unless I know the person really well.
As an unfortunate result of sobriety, I have become very lonely. My job and home situation only exacerbate this feeling. I manage a small hotel which is also where I live. This allows me to take care of my one year old daughter which is a mixed blessing. On the positive side, I'm able to raise my daughter myself and not have to pay for childcare. The troubling side is that all of my "worlds" are blended together. I can be bathing my daughter when the phone or doorbell rings. I can't leave her alone in the tub so I have to ignore it. On the other hand, I may be on the phone taking a reservation while my daughter is screaming in the background, which isn't very professional sounding to the person on the other end of the line. Then there's the housework. My husband seems to think that since I'm "home" all day I should be responsible for doing the laundry and cleaning the house. He doesn't seem to get the fact that I'm doing two other jobs at the same time as well. Anyone who doesn't think childcare is a full time job has never tried it.
I sit here in my apartment day after day just me and my daughter, leaving occasionally to check our mailbox or pick-up something at the market. If I'm lucky, my husband is home and I can go out alone. If he isn't home, I have to be feeling well enough to carry my daughter and her stroller down two flights of stairs, then walk to the post office or anywhere else I want to go. Of course while I'm at "home" I'm answering the hotel phone, checking people in and out, dealing with the housekeepers, compiling the monthly financial and occupancy records, ordering supplies and dealing with any other catastrophe that may arise. For example, last week our hot-water heater sprung a very large leak and needed to be replaced. I had to beg a mainland plumber to come over to fix it. He finally agreed and had a new hot water heater put on a barge that was headed to the island. (We do have plumbers on the island but they're usually so busy they don't even return your calls.)
The best friend I had on the island moved to the mainland and doesn't come over very often so basically I have no friends here. One of my good friends was (and has been) trying to get sober for years but keeps going back out ("falling off the wagon" for those non-alcoholics). I couldn't hang out with her anymore because I never knew if she was sober or not and I couldn't handle the back and forth of it. Basically the only social life I have is the occasional AA meeting.
So, for me, there are definitely some negatives to becoming sober, but I don't regret it for one second. I had to do it. Mine is a unique situation that leaves me lonely and overwhelmed at the same time, but also happy to be able to spend so much time with my daughter.
Anyway - HAPPY BIRTHDAY TO ME!!!
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.
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.
Monday, February 14, 2011
"It's Just Stress"
OK - This has got to be the worst. I know anyone with Fibromyalgia can identify with the following situation and have probably experienced it countless times.
People say things with good intentions but with ignorance sometimes. You can't ever understand what a person is going through unless you've experienced it yourself. I'm sure I've been guilty of the same thing many times, judging someone without knowing all the facts. It's something of which I'm always reminding myself.
We were out to dinner last night when I was talking to my husbands sister-in-law and the subject of my not feeling well came up. She began by talking about her daughter and how she'd had a really hard time with post partum depression and sleep deprivation after her son was born . Admittedly these are both very serious conditions. I can certainly identify with the depression piece after having endured it for most of my life but these two conditions have absolutely nothing to do with my situation. She said something to the effect of "It's probably stress that's causing your problems". I didn't say anything but it really hurt. It always hurts when someone tries to downplay your pain or imply that you're a hypochondriac, just aren't dealing with it the right way or, just complaining. It's so hard to say "I have Fibromyalgia" because no one really knows what it is and with so many drug ads on TV, some people think it's just the newest diagnosis created for the sole purpose of selling more drugs. I can understand how they might feel this way, but in my case (and MANY people's cases), that just isn't true. We're suffering with a horrible debilitating disease that no-one knows how to treat or what causes it. I know I'm preaching to the choir for those who are victims of Fibromyalgia, but I needed to put it in writing since it's already happened to me several times and I was only diagnosed six months ago. I'm realizing that this is something I'll have to learn to get used to. I'll have to find a way to de-emotionalise these comments and let them just roll off my back.
People say things with good intentions but with ignorance sometimes. You can't ever understand what a person is going through unless you've experienced it yourself. I'm sure I've been guilty of the same thing many times, judging someone without knowing all the facts. It's something of which I'm always reminding myself.
We were out to dinner last night when I was talking to my husbands sister-in-law and the subject of my not feeling well came up. She began by talking about her daughter and how she'd had a really hard time with post partum depression and sleep deprivation after her son was born . Admittedly these are both very serious conditions. I can certainly identify with the depression piece after having endured it for most of my life but these two conditions have absolutely nothing to do with my situation. She said something to the effect of "It's probably stress that's causing your problems". I didn't say anything but it really hurt. It always hurts when someone tries to downplay your pain or imply that you're a hypochondriac, just aren't dealing with it the right way or, just complaining. It's so hard to say "I have Fibromyalgia" because no one really knows what it is and with so many drug ads on TV, some people think it's just the newest diagnosis created for the sole purpose of selling more drugs. I can understand how they might feel this way, but in my case (and MANY people's cases), that just isn't true. We're suffering with a horrible debilitating disease that no-one knows how to treat or what causes it. I know I'm preaching to the choir for those who are victims of Fibromyalgia, but I needed to put it in writing since it's already happened to me several times and I was only diagnosed six months ago. I'm realizing that this is something I'll have to learn to get used to. I'll have to find a way to de-emotionalise these comments and let them just roll off my back.
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.
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.
Thursday, February 3, 2011
Still Waiting...
Yesterday I summoned all the energy I had, got my daughter ready and carried the stroller and her down two flights of stairs to get out to the sidewalk in front of where we live. On days when I feel "good" this is what I have to do to check the mail or go to the market. When I get to the sidewalk I have to walk to the market and post office or anywhere else in town I want to go. Many people on the island own a golf cart to get around but we don't have one. There's a fifteen year wait to get an actual car on the island.
So anyway, I gathered up some of the articles I mentioned in one of my last posts and put them in an envelope. I typed a short note to my doctor and my daughter and I walked to the clinic. Well, I walked, she sat. I dropped the envelope off at the front desk and then we had to walk back. By the time we were walking back I was feeling horrible. I was sweating profusely, I felt short of breath and my legs were weak. When we finally got home I nearly passed out. Something I used to do with such ease and speed is now like going on an expedition. I used to run up and down the stairs to my apartment not thinking twice about just running out for something I forgot at the market then running back, my respiration only slightly faster than it was before. Now I can leave the apartment only once a day if I'm lucky. There are many days I wouldn't be able to even walk down the stairs never mind walk anywhere. There are many days I never leave my apartment.
I still haven't heard anything from my doctor. I left two messages and of course the documents. Maybe it's just taking time for her to digest them. And so I wait another week.
So anyway, I gathered up some of the articles I mentioned in one of my last posts and put them in an envelope. I typed a short note to my doctor and my daughter and I walked to the clinic. Well, I walked, she sat. I dropped the envelope off at the front desk and then we had to walk back. By the time we were walking back I was feeling horrible. I was sweating profusely, I felt short of breath and my legs were weak. When we finally got home I nearly passed out. Something I used to do with such ease and speed is now like going on an expedition. I used to run up and down the stairs to my apartment not thinking twice about just running out for something I forgot at the market then running back, my respiration only slightly faster than it was before. Now I can leave the apartment only once a day if I'm lucky. There are many days I wouldn't be able to even walk down the stairs never mind walk anywhere. There are many days I never leave my apartment.
I still haven't heard anything from my doctor. I left two messages and of course the documents. Maybe it's just taking time for her to digest them. And so I wait another week.
Wednesday, February 2, 2011
Freaked Out
I had told myself that I wasn't going to talk about the mycoplasma issue anymore. It was really starting to make me crazy. I can see how conspiracy theorists get so consumed. It's really disturbing to think that there are people out there who would allow so many people to live in misery just to keep their secret. It really gives me a sad feeling.
Anyway, I'm still waiting to hear back from my Dr. This is how we poor uninsured people get medical treatment. You just have to wait until they have time for you. Meanwhile I feel like crap. Maybe I'll call the clinic again today and see if I can get some answers. She'll probably just up the meds I'm already on. I'm going to ask her though if she's ever heard anything about the mycoplasma controversy.
In the meantime we're having a big NE wind storm here today. The boats out in the harbor are rockin' n rollin'. It's forecast to get much worse. Up to 30kt gusts! I'm so glad I'm not living on a boat out there anymore.
Anyway, I'm still waiting to hear back from my Dr. This is how we poor uninsured people get medical treatment. You just have to wait until they have time for you. Meanwhile I feel like crap. Maybe I'll call the clinic again today and see if I can get some answers. She'll probably just up the meds I'm already on. I'm going to ask her though if she's ever heard anything about the mycoplasma controversy.
In the meantime we're having a big NE wind storm here today. The boats out in the harbor are rockin' n rollin'. It's forecast to get much worse. Up to 30kt gusts! I'm so glad I'm not living on a boat out there anymore.
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