Amitriptylene is Rocking My World!

OK, I know I didn't have much positive to say about Amitriptyline in my last couple posts but I've changed my tune completely.  Between the vegan diet and Amitriptylene, I'm feeling better than I have in a long time.  Although, I'm not sure which is actually responsible for this change, if it's a combination of the two or something else entirely. 

I took this picture on my walk to Lover's Cove today, the first time I've taken a walk purely for exercise in weeks.  I put my earphones on and just WALKED!  It felt great!  I've also been taking fewer and shorter naps.  My muscles and joints feel stronger and are in less pain.  I'm trying not to get my hopes up and set myself up for disappointment later but I can't help it.  If it just ends up being a "good week" I'll deal with the disappointment later. 

My original plan was to taper off Zoloft, start Amitriptylene then, when the Zoloft was completely out of my system, start Savella.  I'm completely off Zoloft and up to a therapeutic dose of Amatriptylene but I'm holding off on the Savella since I seem to be feeling pretty well.  After all, I don't want to take anymore drugs than I have to. 

I'm feeling really well about the vegan diet too.  The stomach discomfort I had at the beginning is completely gone.  Oh how I pray this lasts!

Vegan Diet for CFS & FMS - Day 16

I have to admit, of all the different diets I've tried, this is the easiest to stick with.  Since I've been mostly vegetarian for years, cutting out dairy wasn't as hard as I would have thought.  There is actually a very wide variety of vegan food choices including pasta and marinara sauce, peanut butter & jelly sandwiches, humus and spinach wraps, brown rice with cooked vegetables and olive oil and many more meals don't contain any meat or dairy.  I try to use organic ingredients when possible because I still believe that there's something to the theory about chemical sensitivity in food and it's connection to autoimmune disease.  I can't just dismiss the presence of chemicals in our food supply as having no deleterious effect on the health of the general public.  The increase in diagnoses of strange unexplained diseases (such as Fibromyalgia & Chronic Fatigue) is unequivocally on the rise.  The statistics are indisputable, but I digress.

I still believe my experiment with diet change is having good results.  They aren't drastic by any means but I do feel as though I have more energy and I even lost five pounds.  I hope that as I continue eating a plant based diet, the results will become more noticable.

To change the subject a bit, I'm also experimenting with an over-the-counter supplement called Zyflamend by New Chapter which was recommended to me by Dr. Richard Podell in New Jersey.  The capsules are quite expensive so I want to know they really work before investing any more money in them.  Zyflamend is a supplement that was created to address joint and muscle pain (among other ailments).  I started taking two capsules a day back in January and I felt as though my muscles didn't feel as weak as they had but I couldn't be sure the Zyflamend was responsible.  I'd cut down to one capsule a day for the last couple weeks to extend my supply.  I've been noticing increased muscle weakness and knee pain.  Yesterday I took my last capsule.  If the muscle weakness and joint pain continues or gets worse, I'll try taking the Zyflamend again and see if it was in fact what had alleviated the weakness and pain initially. 

Here's the link to the Zyflamend site if you want to check it out.
http://www.newchapter.com/zyflamend

Oh....My Beautiful Garden

When I returned to Catalina after being gone for so long, I knew one of the things I would have to confront was the state of my beloved gardens.  The only people here while I was gone would never have  noticed (or cared) that a plant was withering away and dying from lack of water.  Actually, it wasn't as bad as I had envisioned.  It had rained several times while I was gone, so it was more a matter of overgrowth than anything else.  I did loose one Thyme plant that I'd grown from seeds because it just wasn't mature enough to handle the long dry periods, but I couldn't really complain.

Every time I walk out my door I am reminded that I am unable to kneel down or bend over my beautiful plants to care for them.  The weeds have grown in all the spaces between the bricks.  Only I haven't forgotten that the bricks are there I think.  One plant has grown across more than half of the walkway I use to get to my washer and dryer.  Every time I step around it I cringe and think "one day I'll feel well enough to get my shears out and cut it back".  I've been home for fourteen days and it hasn't happened yet.

Before I got sick, the garden was one of my favorite, most peaceful places to be.  When I went through a very difficult time, at the end of an eight year relationship, the garden saved me.  I spent so much time there and felt so at peace touching the plants and dirt.  The two cats that have lived in the garden for the last three or four years sat near me while I pulled weeds and trimmed plants. 

I so miss being with the plants and the dirt.  I hardly see the cats anymore and the garden is overgrown and messy looking.  It feels like a symbol for all the dimensions of my life that have withered away or have been overgrown like the bricks in the garden.  Meanwhile, I watch helplessly, as it becomes wilder and wilder, returning much to the state it was in when I first moved here five years ago.

Day 3 - 10/21/11 - Alpha Nutirition Diet for Aching & Fatigue

Severe emotional breakdown at 9:30pm.  Felt extreme rage, anger and suicidal thoughts like I have never felt before.  Cymbalta is EVIL!  I have never experienced such withdrawal from SSRIs and I've taken most of the SSRI's out there.  I almost ended up in the ER.  I cannot even write some of the thoughts I was having down because they're too shameful.  I'm just so glad I was able to resist acting upon them.  I will never take a SNRI again.
Symptoms (0=mild to no discomfort 10=most severe discomfort/ pain)

10:30am
Shortness of Breath - 5
Fatigue - 7
Headache - 0
Backache - 7
Heart Murmurs - 3
Eye Pain - 2
All-Over Body Pain - 4
Sore Throat - 3

Food Log
9:00am - 1 cup rice cereal, 1/2 cup rice milk,
10:00am - 1/3 cup ENF Formula
12:00pm - 6 peach slices
1:00pm - 1 cup rice, 1 cup broccoli & carrots, 1/3 cup ENF Formula
5:00pm - 1.5 cup rice, 1.5 cup broccoli & carrots
7:00pm - 1 cup rice cereal, 1/2 cup rice milk
9:00pm - 5 rice crackers

Medications taken at bedtime:
Cymbalta: 20mg, Welbutrin: 150mg, Lorazepam: 2mg

Coming Down Off Cymbalta

I don't know if I'm feeling the way I am because I lowered my Cymbalta dosage or if it's just one of those "fibro-lows".  Last night I sat on the floor in my scalding hot shower and cried, my body hurt so much.  I'm really feeling terrible.  Everything is worse from joint pain and all-over body pain to headaches, fatigue and weird symptoms like eye pain.  In my misery last night, I decided that I would start the "Alpha Diet" today because I had to find some relief and I didn't have any time to loose. 

According to the Alpha Nutrition book by D. Gisalason (although it does encourage flexibility), those who are suffering with severe disease should follow the "slow track" and begin with ten days of fasting while only taking liquid nutrients.  I didn't want to begin fasting until I was completely off my medications, so I've started eating only "Phase One" foods and liquid nutrients and plan to start fasting when my body is drug-free.

The list of Phase One foods is VERY limited.  I think there are thirty-three items on the list and that includes olive oil and at least four derivatives of rice (rice, rice cakes, rice (only) cereal, rice crackers, etc.).  Basically the Phase One diet includes certain vegetables, peaches, pears and rice.  I'm doing ok with it today but can see this getting really old really fast.  So far I'm still feeling like shit symptom-wize but I realize it may take at least ten days to feel any relief.  I'll be keeping my food and symptom journal here on my blog.  The journal entries will be titled "Day One", Day Two", etc.

If this doesn't work I don't know what I'll do.

Mom to the Rescue

Tomorrow I will finally get the help I've needed for so long. After so much struggling and sickness I will be able to rest and hopefully begin to get well. Trying to manage this hotel at peak season, take care of my daughter and deal with my childish husband all the while feeling only partially alive has had me wondering more and more why I keep going. After becoming very concerned about my current state of mind and hearing my desperation through the phone, my mom booked tickets on a flight from Newark to LA that arrives tomorrow. My hope is that I will actually have some extended periods of time to rest and recuperate. I'm ecstatic that she's coming but at the same time, humbled that at age 38 I need my mom to fly across the country and rescue me.

My husband left about a half an hour ago after I told him his choices were the couch or his boat for the night. His immaturity and insensitivity have hurt me one too many times. Although I have asked him thousands of times to take over doing things I can't do anymore, he refuses to pick up the slack. My requests are always met with a roll of the eyes or sigh and often a sarcastic remark. I can't understand how he can be so insensitive to my suffering. It stuns me sometimes. He sees me pushing myself until I'm sick and just sits there watching (or not watching). When I ask him why he hasn't done something I've asked, he tells me he's been busy doing other things. I've decided that I'll stop trying to psychoanalyze his bizarre, hostile behavior and simply not tolerate it anymore. It's so important for me to have a strong support system. I've always hated to ask for help but realize that it's a necessity at this point in my life. I physically can't do the things I once could. I certainly don't need someone in my life making things more difficult for me both psychologically and physically .

Although this is the first time in my life I've had to deal with a debilitating physical illness, the experience of a failed relationship is far from new. If our marriage fails it will be divorced number two for both of us. This time though, there's a whole new dimension to be considered. We have a precious daughter. She loves her father so much and when I think of taking her away from him tears instinctively fill my eyes. One of the few positive things I can say about my husband is that he's a good father. 

I'm just beginning to realize why, for my whole life, I've been so adamant about not having children.  I'm not suggesting that I could have predicted being stricken with this terrible disease and I know that caring for my daughter would be considerably easier if I were well, but I still have this nagging feeling that I've made a big mistake. I desperately hope my little girl doesn't suffer because of my bad judgments. I know I made a mistake in marrying my husband but I've known that for some time. This is the first time there's an innocent bystander.

After a week with no response from my doctor I've decided to take matters into my own hands. I halved the dosage on three of my medications and seem to be experiencing fewer side effects. Unfortunately some Fibromyalgia symptoms are returning. I'm having more pain than I was last week, but not nearly to the degree it has been in the past.  I'll keep experimenting and hope that I can find a point where side effects and symptoms are at a tolerable balance.

Frustration Mounts...

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

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

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

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

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

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

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

So Very Sick and Tired

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

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

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.

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.

I Can Hardly Lift My Baby Girl

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

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

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

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.

"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.

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.

No Bitching This Time...I Swear

I know my last post was pretty pathetic.  To be honest I felt pretty pathetic.  Still do. 

Anyway, I found out that laying in the sun is almost as therapeutic as a hot bath.  I don't have a bath tub so I've had to rely on hot showers to relieve muscle and joint pain, which really isn't the same.  Yesterday we went for a walk with our daughter in her stroller.  My husband had to pick up his paycheck and I didn't feel well enough to walk the distance.  Since it was a beautiful day I decided to sit down by the water with our daughter.  I laid down on a bench in the sun.  Almost immediately, the pain in my joints started to fade.   It had a similar effect as sitting in a hot bath. I almost fell asleep it was so calming.  I'm lucky that it's sunny most of the time here.  I think even laying on the floor or sitting in a chair at a window in direct sunlight may have a similar, if not as intense, an effect.  I just thought I'd pass that along to other Fibromyalgia sufferers out there.  I don't know about all of you but any small thing that can relieve the pain and discomfort even temporarily is a blessing.  I'll have to experiment to see if it has any lasting effects (I mean in the way of hours or even an hour).

Sick and Tired

I feel horrible today.  I almost feel as bad as I did at the start of this hellish journey.  I've been faithfully taking my meds.  I don't understand why I feel this way.  It even hurts to type.  I'm so discouraged.  We were supposed to take a walk for lunch at one of our favorite restaurants but I wasn't able to.  I felt short of breath and my legs just couldn't move very much.  I'm also having these weird heart flutters again.

Well, I guess that's enough bitching.  I went to an AA  meeting last night and it was really great!  One of my good friends who I hadn't seen in a long time was there too.  There was someone at the meeting who was celebrating 60 days of sobriety.  The topic of discussion was the second step.  I have often had a hard time with since I consider myself agnostic.  She shared her difficulty with finding or believing in a higher power, God.  I then shared the way in which I deal with the second step.  I hope she found it  helpful.

My daughter is desperately trying to grab my laptop and press all the buttons.  For some reason she has a lot of energy this evening.  I wish I had just some of that.

Another Fibro Day

OK - it's back.  About 5:00 today the aching started again. Then I felt the almost irresistible urge to close my eyes.  I laid down and closed my eyes but baby girl was making too much racket with her toys.  I drifted in and out of sleep for about a half hour.  I then, maybe foolishly, took my daughter on a stroll to visit her dad down at the pier.  Getting back up the stairs with her was excruciating.  My knees were killing me. 

I really need to learn that when I start feeling bad I have to rest.  I'm trying to get back in shape but it seems like the day after I exercise I feel weaker instead of stronger.  It's counter-intuitive to be sedentary when I'm trying to recover.  Exercise is supposed to be a good thing - to make you stronger and healthier - not weaker and sicker.

Tomorrow, I think I'll go to an AA meeting.  It's  basically the only social life I have.  How friggin' pathetic.  I'm stuck in this apartment with only the baby day after day.  I feel so trapped. The hotel is so quiet this time of year, the phone hardly ever rings.  I guess I should try to go to sleep since the baby is sleeping.  Maybe I'll feel better tomorrow if I get enough sleep.  I noticed that how much I sleep is directly related to how I feel.

Good Day

Today was great.  I got to leave the island without the baby and meet up with a couple of my friends. We did girl stuff like try on clothes and makeup at the mall.  I was so happy that I was actually feeling well enough to take the boat ride then walk all over the mall.  I did have to excuse myself a couple times to go sit on a bench or something when the fatigue set in, but all in all the Fibro didn't keep me from doing what I wanted today.  It was a real victory.

I always took my health and physical fitness for  granted - never again.  I guess that's one advantage to this illness.  A little humility never hurts anyone.  Getting knocked down a few pegs every once in a while can be just what we arrogant humans need.

 I'm so glad that this particular "flare" lasted only one day.  I'm hoping that I will be able to start exercising again so I can loose this 25 pound baby weight.  It was pretty depressing to go shopping and have nothing fit or look decent.  I used to be thin and in good shape.  I know I'll get there again but I have found that exercise has to be increased very slowly and carefully.  Too much exertion in one day leads to a flare.  It's a very delicate balance.

On an unrelated note, my husband and I made up yesterday.  He apologized and promised to try harder.  That's all I can ask for.

Bad Night

Not long after my last posting, chaos broke out in my household.  My husband and I were bickering as as usual, when the argument escalated to a whole new level.  I was crying of course (my normal reflexive posture).  Our conversation entered the terrifying realm of divorce.  We've both been so unhappy, since I got pregnant really.  I won't go into the boring details but the outcome was him leaving to spend the night on his boat.  Being 37 years old, and divorced once, I've had my share of relationships fail.  But this is the first time there was a vulnerable, precious child. A completely faultless victim. I cried all night thinking, "What have I done?!  I've brought this beautiful child  into the world and already I'm not sure if I can give her a stable, loving family as I had".  There were tears in my husbands eyes (which I have never seen) when he kissed our daughter goodnight and walked out the door.  He said "We have to work this out.  We can't do this to her".

I know the arguing is exacerbating my fibro.  I know that's why I started feeling bad.  I feel completely drained of energy and life.

To Continue From Where I Left Off...

So, my pregnancy was pretty normal until about the 4th month.  Then the overwhelming fatigue set in.  And it REALLY set in.  I barely had enough strength to stand in the shower.  Lifting my hands to wash my hair was excruciatingly difficult - as though I were lifting a ten pound weight or something.  I laid on the couch all day every day falling in and out of sleep.  It kept on this way until I finally decided to see my Dr.  Something was really wrong.  I had to take a cab to the clinic (normally an easy walk) because I was so weak.  My Dr. did all kinds of blood tests and of course everything came back within normal ranges.  My Dr. said "it must be a pregnancy thing".  She told me to make sure to take my vitamins and to get enough protein (I'm a vegetarian). 

Anyway, about 3 weeks after having my daughter, I started to feel the flu symptoms again although this time it was very different.  One evening my whole body began to ache much more severely than it had before.  I started to sweat and I felt sick.  I can't describe the symptoms exactly - just sick.  I felt like I had to lay down or I would pass out.  I felt as though I had a high fever but each time I took my temperature it was normal.  The episode went away after a couple days but returned 6 months later and has never left.

I went back to my Dr. and she did a battery of "exotic" (& expensive) blood tests.  My ANA came back positive so we started exploring the many auto-immune diseases that exist.  More blood tests.  This time my ANA came back negative so my Dr. decided I didn't have an auto-immune disease after all.  All the blood test results came back within normal ranges again.  I was so frustrated because I really wanted to know what was wrong with me.  She put me on high levels of steroids for a couple weeks, which seemed to help, but was not a long-term solution.  My Dr. called a Rheumatologist she knew (I couldn't afford the consult fee at any specialist).  He told her to double the anti-depressants I was already on for depression.  I am now taking 400mg Welbutrin, 200mg Zoloft, 5-10mg Cyclobenzaprine and 2mg Lorazepam every day.  I wasn't back to my normal energy levels by any means but it was really helping for a while (about a month).  Until yesterday I thought I was on the mend.  I guess not.