November Rain

It's raining in Southern California and since it hasn't rained substantially in a long time, water is making its way into everything.  One leak made its way into the laundry room and shorted out an electrical outlet that almost started a fire at our small hotel.

Winter is here.  This does nothing positive for my state of mind which is true for many others as well.  Motivation for strategies I had formed (and posted endlessly about) in regards to my physical healing have all but gone.  I realize that this change in attitude is due mostly to the deep episode of depression I'm in.  I hope to address this problem as soon as I'm able to make an appointment with my doctor.  I'm realizing, reluctantly, that I won't be able to heal myself physically until I'm able to function mentally and the only way to do that I fear is by taking more medication.  I'm really discouraged by this realization though it's hardly the first time I've had it.  I told my therapist in a recent session that I had felt better physically while medicated.  I didn't feel well, but I did feel better than I do now.  I'm in almost constant pain now.  I had so wanted to be drug-free at least for a short time, to see what it was like, but it doesn't look like I'll be able to do it.  I'm so disappointed.

I've been in this cycle of meds/ no meds for so many years and I know it's something I'll struggle with for the rest of my life. I've managed to lower my Cymbalta dosage to 20mg every fourth day.   I'm feeling light-headed and experiencing a lot of "brain-zaps".  The symptoms may be diminishing but I'm not really sure.  I've been trying to titrate off this evil stuff for over a month and I'm still having withdrawal symptoms.

Plan B

The episode of extreme fatigue I wrote about in my last post has passed.  Now it's just the normal fatigue and pain I've been experiencing for the last two years. 

Two days ago, I called the owners of the hotel I manage and told them I would be taking a three month medical leave.  When one day last week I discovered that I had taken at least two reservations and had no recollection or evidence of them anywhere, I realized that my cognitive impairment was much worse that I though.  I called my good friend who used to co-manage the hotel with me a few years ago and asked him if he would like the job.  When he said he would, I called the owners and let them know what would be happening.  They were very understanding and thought I should do whatever I needed to get better.  They said they didn't want to loose me as a manager and I sincerely hope that will not be the case.

Now I don't have a job.  I'll be completely dependant on my husband financially and the thought of that makes me sick.  I have an Etsy shop where I sell my art and jewelry (www.etsy.com/shop/thorawish sorry for the shameless plug) but I don't make nearly enough to completely support myself.  I've been working on it whenever I have the energy and my sales are up so I can only hope they continue.

I've been starting to admit to myself that I may not have a normal job for some time.  I've been wracking my brain thinking of a way I can earn a living from my couch.  A friend suggested I check out SEO (search engine optimization).  There are quite a few SEO telecommuting positions available out there from what I've seen on job-search sites.  I have a BFA which won't do me much good in this field but I found an on-line certification program in Internet Marketing at UC, Irvine.  It's $550 a course and you need to take six courses, I think, to receive your certification.  I hate to get into such debt for something that may not pay off but I'm not sure what else to do.  It's really scary and depressing.  I need to be able to earn a living somehow.  It's not like I have disability insurance or anything and I'm sure I couldn't get SSDI.

Can hardly lift my arm. So scared

Still in bed. Don't have strength to lift my head from the pillow. Sorry about the fragmented sentences. Typing this on my iPhone with only one eye opened. Can type a couple words then have to close my eye and rest again. Eye lids are so heavy I can only hold them open for a minute or so, then they close.

My husband is in the other room. Must think I'm just sleeping late. I'll have to text him since I can't call out to him. I feel like I must be dying. Would be a relief from this - whatever it is that's slowly rotting my body.

As I lay here in pain and profound weakness I hear the joyful cheers of spectators outside my window as athletes in a triathlon victoriously cross the finish line. Oh my god.

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.

Crashing Down Off the Alpha Nutrition Wagon

Okay so it's now day 7 on the Alpha nutrition diet. My mental state has made it very difficult to maintain any type of discipline. Yesterday I didn't write down anything I ate or any of my symptoms although the severity of my symptoms don’t seem to have changed much. Today I also did not write down anything I ate or any of my symptoms and I ate an entire small pepperoni pizza which made me feel like I was going to puke for about an hour.  The pizza was a bit too well done but it still tasted good!

Last night I intentionally skipped my 20 mg Cymbalta dose for the first time. I felt okay until the late afternoon today when I started feeling lightheaded and nauseated. These symptoms got worse as the evening progressed so I decided to take a pill to minimize my discomfort. It seems to have helped with the nausea but I'm still a bit lightheaded. My plan is to take the 20 mg dose as soon as I begin to feel lightheaded.  Hopefully the duration between doses will get longer and longer until I can stop taking it all together.

I wrote this in one of my previous posts and I’ll write it again.  Cymbalta is evil!  I wouldn’t recommend it to anyone.  It’s a very harsh drug with very harsh and dangerous, even life threatening side effects. If I had gone through with some of the crazy, violent obsessions going through my mind the other night, my life would either be over or I would be in jail. I’m not exaggerating in the slightest.  Since the episode three nights ago, both my therapist and medical doctor have been calling regularly to check up on me and are very concerned about my mental state.   As I’ve mentioned several times before, I’ve taken many different drugs for depression and Fybromyalgia and this is one of the worst!  I can’t wait till I’m completely free of it.

Day 4 - 10/22/11 - Alpha Nutrition Diet for Aching and Fatigue

Still feeling like crap...

Symptoms
(0=mild to no discomfort 10=most severe discomfort/ pain)

3:00pm
Shortness of Breath - 4
Fatigue - 7
Headache - 2
Backache - 7
Eye Pain - 2
All-Over Body Pain - 6

Food Log
9:00am - 1 cup rice cereal, 1/2 cup rice milk,
10:00am - 1/3 cup ENF Formula
3:00pm - 6 peach slices, fruit ice pop
1:00pm - 1 cup rice, 1 cup broccoli & carrots, 1/3 cup ENF Formula
4:30pm - 2.5oz can salmon, large mango smoothie
6:00pm - 1cup rice, 1 cup broccoli & carrots, 1 cup rice cereal & 1/2 cup rice milk
9:00pm - 5 rice crackers

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

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

Day 2 - 10/20/11 - Alpha Nutrition Diet for Aching and Fatigue

Still feeling about the same or worse.

Symptoms (0=mild to no discomfort 10=most severe discomfort/ pain)
10:00am
Shortness of Breath - 5
Fatigue - 7
Headache - 0
Backache - 5
Heart Murmurs - 5
Eye Pain - 2
All-Over Body Pain - 4
Sore Throat - 3

Food Log
8:30am -  1/2 cup rice cereal, 1/2 cup rice milk, 1/3 cup ENF formula
9:30am - 4 peach slices
11:00am - 1 cup broccoli & carrots, 1 cup rice
4:00pm - 1 cup rice, 1 cup broccoli & carrots
6:00pm - 1 cup rice, 1 cup broccoli & carrots
8:00pm - 1 cup rice cereal, 1 cup rice milk
9:00pm - 8 peach slices

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

Day 1 - 10/19/11 - Alpha Nutrition Diet for Aching and Fatigue

Slept until around 10am.  Woke up feeling bad:

Symptoms (0=mild to no discomfort 10=most severe discomfort/ pain)
                        12:00pm |  5:00pm
Shortness of Breath - 4  |  4
Fatigue - 6  |  6
Headache - 2  |  0
Backache - 6  |  3
Heart Murmurs - 5  |5
Eye Pain - 3  |  3
All-Over Body Pain - 4  |  4
Joint Pain - 5  |  4

Food Log
11:30am  -  6 peach slices, 3/4 cup white rice
12:30pm  -  1 cup cooked broccoli & carrots, 1tbsp olive oil, 1tsp salt
1:00pm  -  1 baked sweet potato
3:00pm  -  1 cup rice cereal, 1/2 cup rice milk
5:00pm  -  6 peach slices, 1/3 cup ENF formula
6:00pm  -  1 cup rice, 1 cup broccoli & carrots
7:30pm  -  1 cup rice cereal, 1 cup rice milk
9:00pm  -  1 cup rice

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.

Reprieve of Sorts

My husband has moved back to our apartment.  We discussed our problems and made some compromises.  I won't regurgitate the tiresome details. 

It's been about nine days on the lowered doses.  Now I'm taking 40mg Cymbalta, 150mg Welbutrin and 2mg Lorazepam.  I've been feeling better than average the for last three days.  Tonight I'll take 20mg of Cymbalta rather than 40mg.  The thought gives me some definite anxiety since I do not want to repeat the experience I had ten days ago, but I'm so anxious to get  this crap out of my system and anxious to start the food allergy investigation.  I'm hopeful, but hesitant.  I'm so worried that it won't change anything and I'll become more desperate and hopeless than I am even now.  As each experiment fails, I think more and more that this disease will be my lifelong rival and I begin to plan my life as a disabled person. 

My daugher, who is now ninteen and a half months old, has learned that sleeping requires closed eyes.  When my husband or I tell her to go to sleep she lays her head back and with obvious force, squints her eyes closed. She reaches a tiny hand to her eye and so gently traces her closed eyelid over and over with a pointed index finger.  She cannot see but can only feel her closed eyes and imagine how she may appear as she sleeps. 

The Latest Research...

After becoming so frustrated and angry with my Rhumatologist, I've decided to dump her and do some serious research into this Fibromyalgia crap myself.  I created on-line accounts with a few medical journals and medical publications and have started reading what ever I can find on-line.  What ever did we all do before the Internet?  Since I don't have any medical training other than the few years I worked as an Administrative Assistant at the Visiting Nurses Association, I admit it's been very slow going.  I've had to stop reading to look up a few words, phrases and acronyms and some of the articles are almost completely incomprehensible to me.  

However, I have read some very  interesting studies that have been done with respect to Fibromyalgia.  The seeming absurdity of some of them only reinforces what I've inferred since day one...no one knows squat about this thing nor do they even know what studies to conduct.  Many of the studies are about different drug reactions or interactions and pertain to symptom treatment only and don't address causes or cures.  It is all very depressing which I know isn't news to anyone else suffering with this.  All I can do is keep reading and hope I find something helpful.  I'll be sure to share if I do.

Trying to Get Off Cymbalta?

The carb-free thing didn't work out but I'm not convinced that it isn't a diet issue that's causing my problems.  I've found some information on "delayed pattern food allergy" on the web and although I may be grasping at straws it sounds like an interesting theory to me.  I ordered a book by Dr. Gislason which explains the very involved process for discovering if you may in fact have a food allergy.  According to what I've read, it may take many months to come to any realization but if it works it's easily worth the time.

To prepare for fasting, which is the first step in the process, Dr. Gislason suggests that you rid your body of all prescription medications (as well as nicotine, caffeine & alcohol among other things).  I've been on SSRI's for about fifteen years to treat my Major Depression, so I'm a bit apprehensive about not taking them since I've experienced some severe depression in my life.  I've also had some experience with SSRI withdrawl so I know not to stop taking them abruptly.  I'm taking 60mg of Cymbalta once per day, so my plan was to take one dose every-other-day for a week or two then take one every third day, etc.  Since the medication comes in capsules, they can't be split in half.  I've used this method to wean myself off SSRIs before and have never had any problems.

Three days ago I intentionally skipped my Cymbalta dose before I went to bed, planning to take a dose the next night.  I woke up the next morning hardly able to move.  My muscles were so weak I could baredly lift my head from my pillow to drink some water.  As the day progressed I became more and more nauseated and I shivered with cold sweats.  It reminded me of my drinking days and the horrible hang-overs and alcohol poisoning I suffered all too frequently.  Unfortunately, my sickened state prevented me from realizing the source of my suffering until later in the evening.  I took a dose immediately but the damage was already done.  The next morning the withdrawl symptoms were gone.

I have NEVER experienced SSRI withdrawl symptoms that severe or sudden before.  In the past it's taken two or three days before I started to get "brain zaps" and feel dizzy or nauseated.  I admit that I was getting over a cold virus so that may have had some effect but I don't really think so.  My doctor prescribed 20mg tablets and I've been taking two of those once per day for the last two days and I haven't experienced any withdrawl as of yet.

If anyone out there is planning on quitting Cymbalta, be careful!  Also, don't let your prescription run out and think you'll just call your doctor tomorrow.  If you do, you may suffer severely for it and I wouldn't wish that on my worst enemy.

Freida Kahlo

I just watched the film, Frieda, one of my favorites, yet again.  Firstly,  BRAVO Salma who's performance is amazing.

Freida Kahlo is one of my favorite artists.  I think what I love most is the candidness of her work.  Every time I view her art, I suddenly feel as though she were a childhood friend and I had lived her experiences with her.  Each of her paintings speaks to a very specific instance of suffering she endured.  Whether she painted about her relationship with Diego Rivera, the loss of her unborn child or most profoundly, her trolley accident and the years of pain caused by it, her emotions bleed through each canvas with disturbing familiarity.

At the end of the movie, a scene which portrays the last days of Freida's life and which I have viewed countless times, had an unforeseen effect on me this time.  Completely bed bound by that point in her life, the scene takes place in Freida's bedroom with Diego entering to visit at her bedside.  He says her name and she responds, "I don't think there's any Freida left in here".  I was watching the movie with my parents and husband and suddenly found myself choking back my emotions.  Tears flowed and I tried to hide them with my hand.  The scene had subconciously reminded me of a recent conversation with my therapist where I told her that I felt like a shell of who I once was.  I thought of all of the things I had done and places I had gone and it was as though I were recalling a character in a novel.  Sometimes I can't even remember what it felt like to hike to the top of a hill and it was only two and a half years ago.

I'm certainly not comparing my experiences to those of Freida Kahlo or implying that I can begin to imagine what she endured, but at that moment I really felt like I understood her statement in that scene more than I ever had.  I never really appreciated how much my physical body and it's strengths or limitations dictated who I was as a person.  It may sound naive but it's true.  I was hoping to learn this lesson in my seventies rather than my thirties but I suppose every lesson is a good one somehow...well it sounds good anyway.

Surprise Surprise

My parents left on Monday and what I feared but assumed would happened has happened.  My husband has not picked up at all from  where my mom left off - far from it.  He's behaving exactly the way he did before she came.  He's acting like a childish brat who rolls his eyes or comes up with lame adolescent excuses every time I ask him for his help with something.  I'm beginning to realize that this marriage will soon be over.  I cannot live with a man who treats me with such disrespect, especially being as sick as I am.

I just finished a carb-free "two week test" which may have indicated I f I had a carbohydrate intolerance since the symptoms are almost exactly the same as Fibromyalgia (strange how so many things are).  I didn't really see any change so I went on a monumental carb binge on the last day of the "test".  I pretty much feel the same as I did before I did the test.  I'm still intrigued though with the idea that I may have some type of food allergy or intolerance.  I've ordered a book which is a step-by-step program to test yourself for these situations.   I understand it can be a many months long process.  Maybe it's just a scam, but I'm willing to try anything at this point.  The $500 per month Cymbalta hasn't done a thing for me.  I've tried so many medications and the only one that helped was Prednisone which my doctor promptly took me off  saying that it wasn't safe to take long-term.  What a tease.  There's got to be something.  I'll let everyone know how the program is working after I start.  Wish me luck!

Care Giver, Care Taker

I was just reading some of my older posts and noticing how much the theme of this blog has changed from being a very clinical and somewhat emotional discovery of my new disease, to a mechanism for which I try (in vain) to explore my marriage problems.  Of course, my husband and I probably wouldn't have as many problems if it weren't for this damned illness but it really has brought out  his "true colors" (if you'll excuse the cliche).  I've already written in length about having a strong support system or at least a single person you can rely on to take over the physical duties you can no longer do.  This is of course a huge commitment and in most cases, a bit much to ask of a friend.   But a parent, sibling or child should be willing and able to help you out (unless of course you've spent your life being a jerk, in which case I say "good luck!").  The obvious fit for the job of caretaker is of course your spouse.  Considering you both actually took a witnessed vow in which you said you would love each other in sickness and in health, it seems almost a contractual obligation. 

As you're reading this I can hear you thinking "What the hell is all this talk of contractual obligations?  Of course the "task" of care giver falls to your spouse if there is one and they are physically able.  Your spouse should want to take care of you.  After all, he or she loves you and would do anything possible to ease your suffering.  Right?"

I'm not suggesting by any means that caring for a sick spouse is easy.  It's extremely difficult, heart-wrenching and exhausting. Even the most saintly among us can slip under the immense burden.  I've now had the experience of being a caregiver and now one in need of a care-giver.  I was the only one to care for my ex-fiance several years ago who suffered from mental illness (OCD) as well as a severe bout of Lyme disease which rendered him hospitalized and very sick for the better part of a year.  His mental illness was the element that broke our relationship (at least that's what I believe).  Reading my journals from that time, I can practically feel my desperation pouring from the pages.  I spoke to his doctor on his behalf because his illness was so acute at one point (and his doctor had a really crappy bedside manner) that they had a hard time communicating.  I counted the days till his therapy sessions and doctor appointments, hoping that from one of them he would come home "fixed".  I guess I cracked before he did and ran screaming into the night, away as fast as I could, from our otherwise loving eight year relationship.  After about four years after we amiably parted ways, he got married.  I hope his new wife is stronger than I was. 

Am I Missing Something?

Either I've missed something major in my research or my cognitive abilities have been more compromised than I thought.  If anyone reading this post could offer some insight I may have missed I would really appreciate it.

For the past year and a half I've learned more than I care to about antidepressants (SSRIs, SNRIs, Trycyclic, etc.) and other forms of medication from pain killers to anti-convulsants and sedatives.  I've been prescribed about ten different medications (so far) by several doctors as I've tried desperately to get some relief from my illness.  Right now I'm taking 200mg Welbutrin, 60mg Cymbalta, 100mg Neurontin and 2mg Lorazepam once daily.

Actually, antidepressants are far from new to me.   I've been taking them for about fifteen years.  I've suffered with depression for as long as I can remember with my earliest memory of being depressed taking place in my second grade classroom.  But it wasn't until 1995, while I was attending college, that I was finally diagnosed  with Major Depression and medicated.  Since then I've probably taken most of the antidepressants on the market.

About eight years ago I developed severe Panic Disorder and started taking Lorazepam for acute attacks.  After my panic became partially controlled I used Lorazepam on occasion to help me sleep.  A year and a half ago when I became ill with Fybromyalgia my sleep was severely disrupted as it is with many sufferers.  I couldn't stay asleep and I was plagued with disturbing dreams and horrible nightmares.  I started taking the Lorazepam again and it magically helped me sleep without any noticeable side effects.        

OK so, here's where the confusion starts. The last two doctors I've seen have insisted that I stop taking Lorazepam due to it's "addictive" nature.  I've been prescribed other medications that are meant to replace it, the latest and greatest of which is Neurontin.  I took the prescribed dosage for about six weeks and never experienced any reduction in the side effects which were SEVERE and included nausea, dizziness, migraine headaches, confusion and excessive tiredness.

I'm not understanding the logic here.  Although Lorazepam is supposedly addictive, I've been taking it on and off for eight years.  When I do take it, I'm able to get a good night's sleep, wake up feeling rested and without side-effects.  I've gone days and even weeks in the past without taking it and never experienced any type of withdrawal (which I have from other medications).  The fact that Lorazepam is addictive seems beside the point in this case.  It has worked well for me consistently and I haven't had any ill effects that I'm aware of.  The same cannot be said about the drugs that have been prescribed to replace it.  What am I missing?  Is there some type of stigma attached to the prescribing of Lorazepam (Ativan) in the medical community?  Is it some kind of taboo?  I 'm thoroughly baffled and can think of no other reason that my doctors would be so adamant that I not take it.  Any insight on this?

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.

The Latest Boring Update

I'm finding myself in a very familiar situation but it's not de ja vu.  I've called and left two messages for my doctor, the first on Tuesday and haven't gotten a response yet.  I've cut back on my medication because I can't handle the side effects any more.  I've been feeling so nauseated and having such strong vertigo for the last two and a half weeks that I couldn't get out of bed a couple of days ago.  I've been feeling progressively worse not better.  I'm beginning to think that either the Cymbalta, the Nurontin or the combination of the two are not going to work for me.  This is particularly frustrating since I paid almost $300 for fifteen days worth of the Cymbalta and had to jump through a lot of paper work hoops to apply for the patient assistance program.  It looks as though all of my work may have been for nothing.  Work that was done while I was experiencing a great degree of discomfort and wanted only to be laying in my bed, in the dark.  I seem to be able to ward off the worst of the migraine headaches by staying really hydrated.  I realized that I was loosing a lot of fluids due to my excessive sweating.  I hope my doctor calls tomorrow with some encouragement but I'm fairly sure I'll be the one making the phone call.

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.

Peaches & Cream & Funky Carpet

My doctor has prescribed some new medication.  She took me off Zoloft and Flexoril and replaced them with Cymbalta and Nurontin.  Both of these new medications have some seriously inconvenient side effects .  I've been on them for about two weeks now and I'm still feeling nauseated, dizzy, super fatigued, weak and sweating like a pig.  In the past couple of days I've also been getting horrible headaches along with everything else.  I feel horrible.  I'm trying to run the hotel while taking care of my seventeen month old daughter at the same time and it's really sucking the life out of me.  This is our high season here and the phones are ringing off the hook.  The moment I pick up the phone my daughter screams on the top of her lungs which makes for a great impression to potential guests. 

It certainly doesn't help matters that I've found my husband is pretty much unable to deal with my illness.  Somehow, he feels sorry for himself and thinks he's getting the short end of the stick.  I have to keep reminding him that I'm the one who's sick and that it really sucks for me too (to put it very mildly).  Today I had a mini-meltdown (if there is such a thing).  My husband had apparently dumped water on the carpet (again) and neglected  to sop it up thoroughly.  Since it's been really warm the past few days, the spill, of which I was unaware of until today, had started to ferment making the carpet smell somewhat like cat piss.  This is not the first time this has happened and  I thought we had learned last time that when you spill something on the carpet and don't clean it up (especially in the summer) it quickly takes on a life of it's own...literally .  This smell does wonders for my nausea.  Well, this afternoon as I was discovering the source of the horrible smell, my daughter walked over to where I was sitting on the carpet and proceeded to slowly pour her peaches along with the syrup from her fruit cup on to the floor next to the existing funk.  I pretty much lost it at that point.  I just layed down on the floor and cried.  My daughter was very confused and a bit distressed I think because she kept trying to lift my head with her little hand.  My husband had been trying to take a nap because he had to get up at five am to take out a fishing charter.  I walked in the bedroom and told him I was sorry, but he was going to have to forgo the nap for today.

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.

 

Patience and More Patience

When I first started researching Fybromyalgia I kept reading that patience was one of the most important factors in successful treatment because it often took months or even years to get a definitive diagnosis.  I desperately hoped this would not be the case for me but who was I to think I was going to have it easier than anyone else. 

It's been six months since this most recent flare started and I really don't have any answers yet.  I finally went to the mainland yesterday and saw an actual Rhumatologist.  She asked me lots of questions I had never been asked before.  She had me walk across the room, bend down and touch my toes and poked my body to check for trigger points of which I had none.  So, as a result I don't fit the criteria for Fibromyalgia according to her (and many other sources I've checked).  She was thinking  it might be a viral thing like Epstein Barr or Lyme Disease.  She ordered blood work and I still haven't finished paying off the first round.

So, I go back in four weeks and have blood drawn in three.  It's so very hard to be patient when all you want is to know what's wrong with you and why you go to doctor appointment after doctor appointment and have no answers.  It's a bit of a comfort to know that there are many people going through the same thing right now, although I wouldn't wish this on my worst enemy.

The Wildest Dreams

A few days ago I watched the documentary film, "The Wildest Dreams".  Conrad Anker, an accomplished mountain climber, finds the body of George Mallory five hundred feet below the summit of Mt. Everest.  The body is surprisingly preserved on the frozen mountain, his letters and papers still perfectly legible.  One of his legs had been severely fractured, the bone had ripped through the skin and several ribs were broken.  Mallory had aspired to be the first human to reach the summit of Mt. Everest in 1924 but never made it off the mountain alive.  The film documents Anker as he becomes obsessed with discovering whether Mallory had reached the summit and was descending when he fell to his death or if he had still been on his way to the top.  Was he the first to reach the summit or not?   There isn't any conclusive evidence either way.  The knowledge of his success or failure died with him.

Aspirations are such a strange and uniquely human phenomenon.  No other living being aspires to be anything other than it is or wants to be anywhere it isn't.  To some, dreams become an object of obsession and the only purpose for living, while others are content to think about them from time to time, then put them away in the backs of their minds to carry on with life. George Mallory allowed his dream to become more important than his life or his family.  I wonder if he would have said it was worth it.

The Light at the End of the Tunnel......Maybe?

After lots of searching and asking around, I finally found a rhumatologist who would graciously see a "cash patient".  I made an appointment for the end of the month.  No one at the office seems able to tell me how much this consultation will cost so I'll just have to cross my fingers that it won't wipe me out completely.  I've taken some money out of a retirement savings account I have and I hope it will be enough. 

This experience has reminded me of one thing, what it feels like to be discriminated against.  I've been discriminated based on my income level before.  I grew up in a middle to low income family and have always dated/ married men who were from as poor or poorer families than mine.  As an artist and non-conformist, I have never sought a job that paid big bucks.  I was always content with having enough money to pay the bills and a little left over.  My current job pays practically nothing.  My main compensation is my housing.  I get paid commission on the rooms I book but in the winter that can be almost nothing.  Since I make so little and don't have health insurance, I'm enrolled in Charity Care and Patient Assistance at the clinic.  These programs only cover certain things, so for the rest I'm on my own.  There is definitely a stigma attached to those who have no other choice but to participate in these programs.  I have experienced it many times.

Stunned ....Hopeless

I'm still feeling the same - horrible.  I've patiently waited weeks for my doctor (a GP) to call specialists for consultations on my condition.  Although I appreciate her intention, to treat me without my having to actually see a specialist, she obviously doesn't have the time to devote to the task.  If you've read any of my previous posts you already know how many unanswered messages and even notes I've left for my doctor and how many days it takes her to "get back to me".  Because I have no insurance or money for that matter, I've had to sit by and suffer for months. 

I was talking to a friend recently who strongly urged me to see a Rheumatologist regardless of cost.  She suggested that I might have to charge it on a credit card or get a loan to find out what was really wrong with me...if I even had Fibromyalgia.  Just the thought angered me, but maybe it was the only way.  I knew the name of the doctor my doctor had been consulting with and I looked him up on the net and found his office number.  I called and asked to make an appointment.  The woman I spoke with on the phone asked if I had a referral from my doctor.  I explained that the referral I had wasn't for insurance purposes but rather a "word of mouth" referral.  She asked if I had insurance and when I said I didn't, she dismissed me and said that the doctor didn't accept "cash" patients.  Thoroughly confused, I asked for clarification.  "We don't accept patients who don't have insurance" she stated coldly.  I didn't know what to say.  I couldn't believe that the doctor wouldn't see me because I didn't have insurance.  Wasn't that discrimination?  I hung up the phone in disbelief and I cried.  I felt completely helpless and hopeless.  Seeing the specialist had been my last hope and now that hope was gone.  What if no doctor would see me? 

Me, the Sea and My Life Now

At the end of my last post, I was still living aboard Perdida with Mike.  We had lost our very beloved fourteen year old dog Happy and mourned his loss as though we had lost a child.  Things were beginning to unravel below the surface but our stubborn plan to sail to Hawaii was still on course. 

The story doesn't have a very happy ending so far as answered dreams are concerned.  We never sailed off to Hawaii.   I never got to sit in a tropical lagoon in Perdida's cockpit watching the sun set.  I was never able to use any of the skills or knowledge I learned in the countless seminars and classes I'd attended.  I never felt the freedom of being out in the ocean, no land in site, standing at the helm with sea air blowing through my hair as I had imagined it with such excitement since as far back I can remember.  I had foolishly assumed this journey was to lead me to my life's purpose.  The pull to the sea was so strong, how could it not be destined?  How could something I'd never felt such joyful anticipation for completely abandon me.  I still don't really understand what happened.  Perdida has been gone now for four years and I still deeply mourn her loss.  Mike left for Hawaii around the same time we sold Perdida.  He sailed her from Catalina with a couple friends to her new owner on the mainland.  Watching her leave the harbor and disappear over the horizon hurt so badly I couldn't stand.  My heart was breaking into a million pieces.  Even while I write this, the pain returns, my eyes are welling up with tears and the computer screen is becoming harder to see.  I always look out into the harbor to see her beautiful, distinctive teal colored hull, wondering if her new owners would take her here for a cruise but I have never seen her.  I suppose I'll never see her or Mike again.

Sometimes I miss Mike deeply.  I love my husband dearly but I know that I will never again share something so life altering, as what Mike and I shared, with anyone else.  The hundreds of photographs we took along our journey are sitting on my hard drive and will probably remain unviewed for the rest of my life.  As I took those pictures I remember thinking "Maybe we can make a documentary about our journey".  Maybe someday my daughter will look at the photos after I'm gone and wonder about them. 

How could I be as close with anyone again?  Mike and I were together for eight years, most of which was spent researching sailboats together, dinners out or at bars spent excitedly talking about nothing but our "plan", going to countless classes and seminars together, buying our dream boat together, going through rough times while learning about our new boat together, packing up our lives and driving across the country to start our new life and so so much more....together.  I learned at Christmas that Mike had gotten married.  It knocked me off my feet, crushing me for about three days.  The same thought kept running through my mind and even quietly sobbed through my tears "Mike....what happened...what happened to us?".   All I could think about was the day we first met.  The excitement that had begun that day and had completely sustained me (while also torturing me) for eight years was completely dead.  No one else on this planet could possibly understand what this felt like but Mike.

 Mike's wedding as well as the onset of Fibromyalgia have completely closed the door on what feels like three quarters (or more) of my self.  I tell my friends and family that I feel like a shell of who I once was but I don't think they really understand.  How could they.  I never could have imagined what this felt like.

My living room window looks out upon the Pacific ocean.  I watch the sea intently every day; calm and blue, then white with wind-driven froth, choppy in a breeze, constantly changing before my eyes.  I can look upon it as a spectator but I cannot participate.  The first affliction that prevented my vision from becoming reality, Panic Disorder, is still there, only lying dormant, waiting until I'm on the sea again.  My second affliction, Fibromyalgia, seems to make the first or any other deterrent seem irrelevant.

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 3^rd 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.

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.