Before my last doctor's visit a week ago, I sat down with all my medical records (a very thick file) and compiled a spreadsheet of all the medications I've been prescribed since this nightmarish ordeal began two years ago. It took a while to organize all this information since dosages on some of the drugs had been changed several times. When I was finished, there were still some holes in my timeline because I remembered that at times, my doctor had changed dosing over the phone and I hadn't written it down. Anyone who has ME/CFS or Fibromyalgia knows that if something doesn't get written down, it's forever lost in the fog that took over where your brain used to be.
Two years ago, when I first visited a doctor about my strange set of life-altering symptoms, he ordered, what I didn't realize at the time, would be the first of many rounds of blood tests. He guessed that I was having a response to some sort of inflammation. He suggested I try aspirin to bring down the inflammation until the blood tests came back with some answers. Everything came back normal including the Rheumatoid Factor except for the ANA titer which came back positive with a speckled pattern - 1:36 .
When I went back a couple weeks later, my symptoms had gotten worse and more blood was drawn. The doctor I saw this time (from the group) prescribed Prednisone at 60mg per day for five days then 10mg per day for fifteen days, then 5mg per day for ten days. A few days after I started the Prednisone, I actually felt a lot better and was able to return to many of my previous activities including, walking up two miles of steeply inclined roads per day. But, about a week into the lowered doses, my symptoms returned and I was experiencing a lot of pain and severe fatigue again.
My doctor prescribed another high-dose round of Prednisone which was effective but short-lived as before. She explained that Prednisone was not a long-term option at this point due to the toxicity of the drug, so I went back to feeling sick and returned to the doctor once more.
Tune in next time for...drug number two!
This is the story of my very frustrating journey through the debilitating and mind-boggling world of Fibromyalgia, ME/CFS, Autoimmune Disease, Depression and more.
Showing posts with label fibro flare. Show all posts
Showing posts with label fibro flare. Show all posts
Friday, January 13, 2012
Saturday, November 5, 2011
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.
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.
Wednesday, October 19, 2011
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.
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.
Tuesday, August 9, 2011
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.
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.
Thursday, August 4, 2011
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.
Monday, August 1, 2011
Invisible Disease, Invisible Support System
I'm sure when my husband married me he had no idea what he was getting himself into. To be fair I didn't either. After the break-up of a long and loving relationship (which I've started to admit may have been a mistake) and numerous failures in the area of thirty-something dating, I met my husband. I was newly sober after years of abusive drinking and he was living on a fishing boat. I loved his carefree, boyish nature (red flag - I know, I know) and knowledge of boats and the sea of which I had something in common. After a short but very passionate period of time we got married in Las Vegas. After reaching the age of thirty-five, my life-long disinterest in having a child had started to waver. What I was thinking when I decided to have a child with this man is any one's guess. Neither of us had children from previous relationships so this would be a first for him also at the age of 41. Somehow his passion and very persuasive nature got to me. The first time I missed a birth control pill I became pregnant. We were so excited that it had happened so fast since our ages were becoming a definite factor in our decision to become parents.
The first indication of my husbands lack of nurturing ability started to show throughout my pregnancy. I had looked forward to being pampered, spoiled and fussed over like I'd heard my friends husbands had. The pampering never happened. He was excited about the baby, but didn't seem to empathise at all with my discomfort or wish to diminish it at all.
A couple of months into my pregnancy I started to not feel right. I wasn't throwing up or even nauseated most of the time, I just felt wrong. As things progressed, I became weaker and weaker to the point that I couldn't stand long enough to take a shower. I was short of breath and my muscles just didn't seem to work anymore. I went to the doctor and she did some blood tests. It turned out that I was slightly anemic but just fine besides. It was just "a pregnancy thing" she said and explained that my body was undergoing severe changes. This was hardly news to me.
After my daughter was born the weakness subsided slightly for a couple of months but then it came back to stay. I felt like I had the flu. My body ached and I was so tired and weak that it became very hard for me to even lift my new baby. I won't re-hash all of the details about the ongoing discovery of my Fibromyalgia and all it's seeming unrelated symptoms since I've already done that in previous posts.
My daughter is now seventeen months old. I've had two brief remissions but have basically been sick since I became pregnant with her more than two years ago. The lack of compassion my husband showed during my pregnancy has continued and become more pronounced throughout this entire ordeal. I really have no idea what's going through his head but somehow I think he resents my becoming sick (although he would never consciously admit it) and feels like he got a bum deal in marrying me. I've asked him so many times to help out more with things and take on more of the house hold responsibilities, but he reacts with a roll of the eyes, as though I'm nagging him. Nagging. That word is the biggest cop-out ever invented. Somehow (usually) the women become the over-reacting slave drivers and men become helpless victims with the uttering of this word. But that's a topic for another post.
If I had had any idea that I would become the victim of this terrible disease I may have thought twice before agreeing to marry my husband. I may also have strongly considered and probably decided not to bring a child into my sickly world. I love my daughter more than life itself and thoughts like these leave me with heavy feelings of guilt. What the hell was I thinking?
I told my husband yesterday that it was over between us. Our continuous fighting wears my already weak body and soul to nothing but a thread. My husband has many issues of his own such as Post Traumatic Stress Disorder from Desert Storm and some cognitive problems of which I could never guess the source. I've tried to be understanding to his struggles but his refusal to apologize for his actions (without being prompted) and his defensive and often hostile reactions erase much of my empathy. I keep thinking that I have to figure things out for our daughter's sake but at how high a cost? My husband has already severely impeded my healing process and I have no reason to believe that anything will change. What kind of a mother will I be if I'm unable to participate in much of my daughter's life?
I should have known better than to marry this "carefree, boyish" "man". What the hell was I thinking?? I just hope anyone else who is afflicted with Fibromyalgia will really think about marrying anyone who may not be able to deal with the intensity of their illness. Having a strong support system is SOOOO important.
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.
Wednesday, July 27, 2011
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.
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.
Sunday, July 17, 2011
I'm Actually Still Here
I've been so busy recently that I haven't had time to write. This is due in part to my recent remission from Fybromyalgia or what ever the hell it is that I have. I started feeling so good that I was able to do things I hadn't been able to do in a long time. I resumed my exercises and was able to really put myself into marketing the hotel for the beginning of our high season. My efforts seem to be working so far. I've been taking many bookings and I already have several weekends during the summer sold out. Considering I'm paid only commission on what I sell, this is looking better and better.
I finally went to see a real Rhumatologist. She ordered bloodwork and my ANA came back positive again. So, she ordered more bloodwork to try to get some more details. I got the results today. My ANA was positive again, 1:80 with a speckled pattern. Everything else she tested for came back negative. She was supposed to call today but her nurse said she was seeing patients back-to-back all day. Oh, I'm so used to this. I would be shocked if a doctor actually called me back when they said they would. Anyway, I've had some episodes of not feeling very well (like after my cousins from Sweden left after visiting), but I've been feeling pretty darn good. Still not back to the way I felt before I got pregnant more than two years ago, but I should be thankful for what I have now. After all, I can walk and carry my daughter (short distances).
One of the symptoms I had been suffering with was shortness of breath. I have to share something that has really helped me with this. A couple of years ago I got a pair of Earth brand shoes. I hadn't worn them in a while but dug them out of the closet a month or so ago and have been wearing them regularly. If you're not familiar with Earth shoes I'll try to briefly explain them. The company makes footwear using eco-friendly materials, ethically responsible methods and they're actually made in the USA. Being the tree-hugger that I am, I was instantly attracted to the company and decided to try a pair. The really unique thing about them is that they use a "negative heel" technology of their own invention which puts your heel 3.7 degrees LOWER than the front of your foot. The advertisements claimed that the negative heel actually put your spine into proper alignment, easing back strain, poor posture and opening the chest up for less labored breathing. All of these claims seemed too good to be true but happily they're not. I'm just a hair under six feet tall so I've always had a bit of a slumping posture. When your sholders are slumped forward it really does impact your lung capacity. Once I started wearing these shoes again I noticed I wasn't nearly as short of breath. The company also claims that since you're essentially walking "up hill" all the time, you burn more calories than walking with a shoe where the heel is higher like all other shoes are. This part I can't speak to but I really recommend them for improved posture.
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.
Friday, April 22, 2011
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.
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.
Saturday, April 9, 2011
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.
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.
Wednesday, April 6, 2011
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?
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?
Friday, April 1, 2011
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.
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.
Monday, March 21, 2011
Me and the Sea
The following is a piece I started writing in 2002. I've posted it now as a (very long) prologue to my next post:
From as early as I can remember, the sea has played a huge part in my life. As soon as we were able to hold up our heads, my younger brother and I spent every spring, summer and autumn on our parents 36’ Colonial - "Valhalla", a beautiful wooden 1960’s cabin cruiser. In the late winter and spring we “helped” our parents’ as it took many full, tiring weekends for them to prepare Valhalla for launching. My father would replace rotted planks and caulk, repair the diesel engine and an endless list of other tasks. My mother scraped, sanded and painted the hull and interior from stem to stern, she sewed curtains, cushions & sheets for the bunks. My brother and I made friends with the other children in the boatyard and we all ran among the dirt piles and chased after hermit crabs in the mud.
When Valhalla was finally afloat, we spent summers and autumns in various anchorages in New Jersey's Raritan Bay or cruising up the Hudson River, Long Island Sound, Fire Island, Block Island, Cape May and so many other places. We were all in love with the sea and my father who is of Norwegian descent, claimed it was in our blood. Sometimes during storms, my brother and I would crouch snuggled together in a corner of the salon, scared and begging our father to turn the boat around. But he and my mother would reassure us that we were safe, and we knew deep down that we were. Some of my fondest memories are of sitting on Valhalla's fly bridge, my father standing at the helm, gripping the classic wooden spoked wheel with a grin ear to ear, his dark brown hair blowing in the wind and his eyes tightly squinted in the sun. As we climbed up waves and surfed down them my father would yell "WOOO HOOO" as though he were a child on an amusement park ride. I took for granted his ability to fix anything that went wrong or broke down and to steer Valhalla through storms and fog without a hitch. As a child, he seemed part magician part Superman. I would lean my head against the rail with such contentment and become hypnotized by the brown foamy water gurgling by the hull (this was during the 1970's before they realized that dumping raw sewage from NY City into the harbor and bay was not such a great idea).
The smells and sounds of Valhalla gave me such comfort. During winter, while snuggled in my bed unable to sleep, I'd try my hardest to recreate the sounds of the water swishing past the hull as my brother and I heard it from our bunks in the bow of Valhalla.
In 1984 my father was forced to sell Valhalla due to engine problems that were too expensive to fix. My brother and I had gotten to the age where we were getting involved with school activities and sports and had begun to take Valhalla for granted. We didn’t really understand what we were losing until she was gone. Valhalla had always been there. She had been a part of our lives, almost a family member. I remember crying alone after my father told us she had been sold. He sold her for $500 because her engines didn’t work, and with the advent of fiberglass, no one wanted to do the work involved with owning a wooden boat. She was probably bought for scrap but my father never told me and I'm glad he didn't. Losing her was a very sad day for our family. We had made so many memories within her bulkheads.
For 5 years our family was boatless. We tried going to the beach in the summer to be near the ocean we missed, but somehow it wasn’t the same. Looking out at the sea from the shore was entirely different from floating atop it. In 1989 my father was able to purchase an older, used 27’ Bayliner express cruiser. The joy was back! It was as though we were picking up from where we left off. My parents planned trips and again, my brother and I cruised the places of our childhood, now as young teenagers. As time went on, my parents sold the Bayliner and bought a 36’ Regal express cruiser. By this time, my brother and I were in college. Our lives were beginning to take their own paths, but we never passed up the opportunity for a family cruise or just a weekend in Horseshoe Cove. My family was so happy together on the sea.
I adored my parents’ boat and being out on the sea, but from a young age, I remember staring longingly at the boats in the bay heeled over on their sides with white sails billowing in the wind. When my brother and I were very young, an older, single man lived on a beautiful wooden sailboat in the dock next to ours. We became friends and when he invited us aboard, the oil lamps, round brass port holes, gimbaled stove and shiny varnished teak struck me as one of the most beautiful things I had ever seen. I knew nothing of sailing at the time, but hoped I would learn one day. I was fascinated by how fast the wind-driven hulls glided through the water without an engine and as I got older and more concerned with the environment, I loved the idea that they were utilizing a natural resource rather than polluting the air and water. I had never even been on a sailboat while under sail but their pure elegance drew me in. I imagined being out in the open ocean, no land in site, sails flying and salt spray on my face. I began to feel a deep urge to travel the world's oceans on a sailboat.
My life continued to take it’s own course. Immediately after college, I got married and my husband Rob and I moved to Highlands, NJ a small fishing town on the New Jersey Shore. I loved living by the ocean, and took every opportunity to walk on the beach after work or on weekends. My little dog Happy also loved romping in the waves and sand on a hot day and chasing the sea birds. My husband knew of my dream and thought it might be a good idea, but maybe when we retired. I was disappointed, but figured I would learn as much as I could about sailing in the meantime and maybe get the chance to crew on someone else’s sail boat. After all, my older brother had just purchased a 37’ Endeavor sloop. Rob and I went to Sail Expo in Atlantic City each January and drooled over the shiny new sailboats, but the dream of sailing into the sunset was a long long way down the road. Rob was more focused on his career. I continued to work at my crappy low paying job, all the while wondering what I was really meant to do in life.
My marriage, for many different reasons, didn’t work out. Rob and I split up in August of 1999…our 3rd anniversary. It was the most painful thing I had ever endured. I was plagued by extreme anxiety, depression and insomnia. I lost weight and started wondering what about life made it worth living. I moved back in with my parents and my dream all but disappeared beneath a shroud of apathy and darkness. My only priority was making it through each day without drinking too much or eating too little. The thought that I could even drive to work and back each day seemed an almost insurmountable task.
As time went on, my deep wounds began to heal and scar over. With the help of medication, my anxiety attacks and depression lessened. I began to look farther into the future than just that day. Slowly as I felt my emotional state stabilizing, my sailing dream peaked its way from underneath the shroud and started to occupy more of my conscience again. It was still a far off dream though. I could never afford even an old beat up boat, and I didn’t want to do it alone anyway. I told myself to be patient, that someday, my dream may manifest itself.
Then I met Mike. On the first day we met, through a mutual friend, I mentioned something about wanting to sail around the world. His eyes lit up and he yelled “ME TOO!”. We started dating and as time went on, our plan began to take shape. We would buy a boat, spend a year or so learning to sail it, then take off for Hawaii. It was ambitious and a bit foolish in retrospect, but we were on a mission. I had never felt such a purpose in life. We took sailing lessons and read every book and magazine we could get our hands on. We went to SailExpo and attended as many seminars as we could fit into our schedule. My excitement was at a level I had never felt before. It seemed as though every decision we made revolved around our plan. It was all we ever talked about. It was all I thought about.
We searched the boat classifieds and looked at a couple of “wrecks” when we finally saw Perdida, a 35’ 1972 Allied Seabreeze Yawl, for sale on the Internet. She was absolutely beautiful. Touted as a sturdy off-shore cruiser and a classic, we were anxious to see her. When we finally traveled to Port Washington, NY on Long Island to see her, we fell in love at first site. She was a bit over our price range, but she was structurally sound and had been kept in pretty good shape especially for her 30 years. It was possible that she may have been one of the beautiful sailboats I had admired as a child in the 1970's. She was one year older than I was.
It was January, and we put a deposit down on her. I had never been so excited. I couldn’t sleep at nigh,t barely able to believe that my dream, our dream, was actually happening. Images of Mike and I anchored in tropical anchorage’s around the world flashed through my head like a slide show on high speed. I continued to read all I could. I wanted to be an expert on everything. I made lists of repairs we would need to make and researched on the Internet how others had gone about doing them. We joined the Allied Seabreeze Owners Association and took advantage of the organization's vast knowledge of Seabreezes. I read many books about the cruising lifestyle and some of the stories intimidated and even scared me. I knew that there would be some really bad and scary times, after all, I had experienced some pretty scary times out on the sea, and although they paled in comparison to some of the stories I read, I was confident that I had a solid basic understanding of the sea from which to build upon. If I were going to be afraid of the ocean, I would certainly have known it by now. We began buying some of the equipment we would need. Especially charts of the Long Island Sound, NY for sailing Perdida down to her new home in Monmouth Beach, New Jersey.
I’m not sure when the transition actually took place. I can’t remember it happening at a distinct time, all I know is that the reasons for my sleeplessness changed from excitement to overwhelming panic. I started having vivid nightmares about violent storms at sea and survival situations. I thought in my head “this must be what everyone goes through when they are faced with a change in lifestyle, I’m just having normal anxiety. It should go away in time.” The nightmares got worse not better. I would wake up sweating and shaking in fear. I couldn’t go back to sleep. As time went on, the anxiety level increased during my waking hours as well. I found that I couldn’t think about anything else. I imagined every catastrophe that could possibly happen on a sailboat. The peaceful images of us anchored in a tropical lagoon were gone. They were replaced with images of a sinking boat, 40 foot breaking waves, the mast snapping off and worse, Mike being knocked unconscious and falling overboard. I began to question myself like I never had before. "Maybe I wasn’t cut out for this. This was too intense. I’m too much of a mental case, after all, I’ve suffered with Major Depression since childhood." My excitement and faith in myself all but disappeared.
Soon my anxiety began to seep its way into other aspects of my life. I was having a hard time at social gatherings. I felt inadequate and never knew what to say to anyone. Conversation was such a struggle that I began to fear holiday and family times. I made excuses for missing dinners and gatherings and self-medicated with lots and lots of chardonay.
We sailed Perdida down from Port Washington in April of 2002. My father and I took the train to NYC then the Long Island Rail Road to Port Washington where Perdida, our new boat, was docked. I was definitely in a state of panic, but my father was there and that made me feel slightly more at ease. The night before we set sail, I had a full blown panic attack on our newly purchased dream boat. I shook and cried uncontrollably. I felt like my life was completely out of my control. Why was this happening to me? I couldn’t stop crying and shaking. My heart felt as though it would pound out of my chest, and even the sight or mention of food made me nauseated. Mike tried to comfort me, but he didn’t know what to do or how to help me. I can’t remember ever feeling so terrified. I didn't know at the time, but that horrible out of control feeling was about to become the thing that would rule my life for the next few years.
What was happening to me? Why was my brain so out of control? How could I go from being so excited and confident to shaking and terrified? Even being on my parents' boat, something that had always been so comforting, was giving me anxiety. I was becoming deathly afraid of the one thing I had always loved and taken comfort in - the sea. How could this be happening?
I began seeing my therapist again after not having gone for over a year. I was put on a different type of anti-depressant, one that had shown positive results in those experiencing anxiety. I was also given Ativan, a sedative, for the severe attacks. We explored my problems in therapy. There were many times I just wanted to give up the dream…give up the boat. It was just too painful, too torturous. Somehow, weekend after weekend; I summoned the strength to go out on the boat even though it was like a horrible form of torture. I took the tranquilizers and talked myself out of most of the bad attacks, but some took a hold of me and I just couldn’t shake them loose.
One afternoon Mike and I were getting ready to back Perdida out of the slip to go out for a day of sailing. He was at the helm and I was on the bow to throw off the dock lines. Suddenly, I was hit with such a severe sense of panic that I became paralyzed. My vision became so blurred, I could barely see. I was so light headed, I thought I would pass out. It’s hard to explain what was going through my mind. The only words that come to mind are primal panic. Panic so strong that I thought I was going to die any moment. I have heard that when a person is in a life threatening situation, their "life flashes before their eyes", if you'll excuse the cliche. Although I have never realistically been in a life threatening situation, I imagine what I felt was similar. Images of death and catastrophe flashed through my mind and I could hardly breathe. My heart was pounding and my hands were shaking violently. Mike was yelling to me from the helm but I couldn’t move. “What are you doing ?” he yelled repeatedly. Finally he re-tied the stern lines, shut off the engine and walked up to the bow. I was still clutching the bow line tightly in my hand. He tried to take it out of my hand but I held it tighter. I was scared to death to let it go. Why? Well…..that’s the question I have never been able to answer. I spent the next few months trying to figure it out. An explanation alluded me, and still does. Obviously it had something to do with my fears about sailing or the ocean, but what exactly? Why now?
I continued to force myself to go to the marina almost every weekend. Every time we left the dock or even talked about leaving the dock, the anxiety kicked in. I tried to make excuses for why we shouldn’t go out. Mike was very supportive and tried gently to force me to confront my fears. As the summer went on, my fears ebbed and flowed like the tide but were always there under the surface if not right out in front. As we experienced more things, my fears became less irrational sometimes, but they were always there, holding me back as though I were lashed to a tree.
After having her transported by truck, Mike and I are now living and cruising on Perdida in Southern California and planning our Hawaii trip in April or May of this year. I still haven’t given up the dream, although it has been the hardest thing I've ever lived through (yes, even harder than the divorce). I am still dealing with the disappointment I feel towards myself and the feeling that I’ve let us both down. I have been very humbled. How could I have been so arrogant to think that all of my dreams would happen without hard work and even pain and suffering? The real lesson here is that when something is really important maybe it shouldn’t come easily. By working hard for something or someone, only then does it become a real part of who you are. The suffering is the real gift if you can learn to accept it as such. It is the everyday journey you take in life that defines you as a person, not your final destination.
Sunday, March 20, 2011
Frustration Mounts...
Tuesday was my much anticipated doctor appointment. The visit was anticlimactic to say the least. I shouldn't have been surprised, I wasn't actually. I expected nothing and that's almost what I ended up with. When I finally got to see the doctor (after sitting in the exam room for close to an hour and while my very cranky one year old tried to open every drawer in the room) she apologized for not having returned my calls. She explained that the rhumatologist she consults with had been "out of the office" for the last two weeks and promised she would call him as soon as he were back in the office. I told her I had been feeling worse and worse and asked if she could prescribe one of those fancy new drugs made specially to treat fibromyalgia. I was so desperate for some relief. In the past we'd ruled these drugs out due to their prohibitive cost, but I didn't care anymore, I had to do something. If I had to, I'd cash in my 401K. She agreed and prescribed the new drug Savella. She promised she would call as soon as she spoke to the rhumatologist and that she would fax the prescription to the pharmacy.
A couple of hours later I walked to the pharmacy to pick up the prescription. After checking with the Pharmacist, the cashier told me that they hadn't received anything from the clinic for me. I sighed deeply and walked out the door while dialing the clinic on my cell phone. My doctor wasn't available, of course, so the receptionist said she would leave a "call back". I waited all day and even called again but never received a call. The next morning I started calling again. The receptionist at the clinic was shocked of course that the doctor hadn't called me back and swore she'd given her the message. She was with a patient but the receptionist promised to "grab" her as soon as she was finished. Later in the day someone finally got her to fax the prescription. When I called the pharmacy they said they had received the prescription but that they didn't have Savella in stock. They'd ordered it and would have it the next day.
The next day I called the pharmacy and they said the prescription would be ready around noon. I picked it up at one, then my husband and I took our daughter on the glass-bottomed boat to see the fish which she absolutely loves. My husband held her, carried her and pushed the stroller since I wasn't able to. Afterwards, my husband saw a sign at a restaurants advertising a corn beef sandwich lunch special. Since it was St. Patrick's Day, he decided he had to have one. While he was eating I started reading the literature that came with the prescription. About halfway through the first page, bold and in all caps it read "DO NOT take this medication if you are also taking an SSRI". Shit! I'm taking 200mg of Zoloft per day which is an SSRI.
After lunch we went back to the pharmacist and asked him about the conflicting drug interaction. His opinion was that I shouldn't do anything until talking to my doctor. Holy shit! Was I an unwitting subject on some sick version of Candid Camera or something? Could this really be happening or was it just another of those fibro induced nightmares I live through every night?
We went back home and I got on the phone yet again. I begged the receptionist at the clinic to please have my doctor call me right away. The staff at the clinic must have thought I'd lost my mind or something. After all, how could so many things possibly go wrong day after day? They again promised they would tell the doctor that she needed to call me and I thanked them for being patient with me and reiterated that I knew none of them was to blame. I waited all day again and received no response.
At this point I was so beaten down that I just cried. Of course this made my fibro flare up even more. My husband was so angry he was ready to kill someone. I felt completely ignored and insignificant. Was I just going to have to live like this for the rest of my life; like a cripple? I waited another night, trying to be as patient as possible. The next morning I called the clinic and demanded to speak to my doctor. "I have to speak to her today...period." I hated being a bitch but this was clearly out of control. I was really suffering and my own doctor wouldn't even return my calls. Finally, about an hour later she called. "What's going on?" she asked seeming at first surprised at my desperation. I told her about the drug interactions and she seemed confused. She said she would have to research it and call me right back. She did actually call back in about 20 minutes and told me not to take the Savella. Since I had been doing so much research on the web, I suggested that I switch to a tricyclic antidepressant that had been shown to be more effective with fibro patients and that I would also be able to take the Savella at the same time. She agreed but didn't know how slowly to titrate me off the Zoloft so she would check with her psychiatrist friend and call me back.
Who knows when and if she will call back. Basically I'm no further ahead than I was before the doctor appointment. I seem to be building an immunity or something to the drugs I am on because I'm feeling worse and my sleep disturbances are returning. Last night I had nightmares about crushed baby skulls and many other terrifying scenarios. I also spent most of the night awake on and off. I slept on the couch so as to not disturb my husband.
A couple of hours later I walked to the pharmacy to pick up the prescription. After checking with the Pharmacist, the cashier told me that they hadn't received anything from the clinic for me. I sighed deeply and walked out the door while dialing the clinic on my cell phone. My doctor wasn't available, of course, so the receptionist said she would leave a "call back". I waited all day and even called again but never received a call. The next morning I started calling again. The receptionist at the clinic was shocked of course that the doctor hadn't called me back and swore she'd given her the message. She was with a patient but the receptionist promised to "grab" her as soon as she was finished. Later in the day someone finally got her to fax the prescription. When I called the pharmacy they said they had received the prescription but that they didn't have Savella in stock. They'd ordered it and would have it the next day.
The next day I called the pharmacy and they said the prescription would be ready around noon. I picked it up at one, then my husband and I took our daughter on the glass-bottomed boat to see the fish which she absolutely loves. My husband held her, carried her and pushed the stroller since I wasn't able to. Afterwards, my husband saw a sign at a restaurants advertising a corn beef sandwich lunch special. Since it was St. Patrick's Day, he decided he had to have one. While he was eating I started reading the literature that came with the prescription. About halfway through the first page, bold and in all caps it read "DO NOT take this medication if you are also taking an SSRI". Shit! I'm taking 200mg of Zoloft per day which is an SSRI.
After lunch we went back to the pharmacist and asked him about the conflicting drug interaction. His opinion was that I shouldn't do anything until talking to my doctor. Holy shit! Was I an unwitting subject on some sick version of Candid Camera or something? Could this really be happening or was it just another of those fibro induced nightmares I live through every night?
We went back home and I got on the phone yet again. I begged the receptionist at the clinic to please have my doctor call me right away. The staff at the clinic must have thought I'd lost my mind or something. After all, how could so many things possibly go wrong day after day? They again promised they would tell the doctor that she needed to call me and I thanked them for being patient with me and reiterated that I knew none of them was to blame. I waited all day again and received no response.
At this point I was so beaten down that I just cried. Of course this made my fibro flare up even more. My husband was so angry he was ready to kill someone. I felt completely ignored and insignificant. Was I just going to have to live like this for the rest of my life; like a cripple? I waited another night, trying to be as patient as possible. The next morning I called the clinic and demanded to speak to my doctor. "I have to speak to her today...period." I hated being a bitch but this was clearly out of control. I was really suffering and my own doctor wouldn't even return my calls. Finally, about an hour later she called. "What's going on?" she asked seeming at first surprised at my desperation. I told her about the drug interactions and she seemed confused. She said she would have to research it and call me right back. She did actually call back in about 20 minutes and told me not to take the Savella. Since I had been doing so much research on the web, I suggested that I switch to a tricyclic antidepressant that had been shown to be more effective with fibro patients and that I would also be able to take the Savella at the same time. She agreed but didn't know how slowly to titrate me off the Zoloft so she would check with her psychiatrist friend and call me back.
Who knows when and if she will call back. Basically I'm no further ahead than I was before the doctor appointment. I seem to be building an immunity or something to the drugs I am on because I'm feeling worse and my sleep disturbances are returning. Last night I had nightmares about crushed baby skulls and many other terrifying scenarios. I also spent most of the night awake on and off. I slept on the couch so as to not disturb my husband.
Saturday, March 12, 2011
So Very Sick and Tired
I feel absolutely horrible today. I know my husband is growing tired of my being sick all the time but I'm so hurt by his apparent apathy. I realize it must be hard to live with someone who's unable to do things she used to be able to, or things most anyone else can do for that matter. He just can't seem to get it through his head that it's my body and mind that are suffering. I think he's more upset about my not being able to do house chores or take care of the baby more than he is about my suffering. I'm starting to think that if I can't find a way to manage this disease he'll get sick of having to do house chores and not having sex when ever he wants because I'm in too much pain or too weak, and leave. I know he'd never want to be away from is daughter who he loves more than life itself so I can foresee a painful custody battle (that I can easily win) and my moving back east to be near my family who will actually help me and care for me. Then he can go find some slut who will have sex when ever he wants (which is always). Is the man I married really that shallow? I find the thought crossing my mind more and more and it hurts when it does. This disease is going to ruin my life on so many levels. My doctor doesn't return my calls and my husband thinks I'm a hypochondriac or something. I don't know what he really thinks because he won't talk to me. He doesn't know how to talk to me or anyone for that matter. How can I be so depressed when I have so many antidepressants coursing through my veins. I can't stop crying.
I'm supposed to have a doctor appointment Monday. I feel like a broken record or more like a fool. I sometimes think I'm the victim of a cruel lab experiment. How long can we string her along before she completely looses her mind. If that's the case, the experiment may soon be over. Especially if it destroys my marriage.
I'm supposed to have a doctor appointment Monday. I feel like a broken record or more like a fool. I sometimes think I'm the victim of a cruel lab experiment. How long can we string her along before she completely looses her mind. If that's the case, the experiment may soon be over. Especially if it destroys my marriage.
Thursday, March 10, 2011
So Much for Tijuana
I've visited what seems like millions of "Medical Tourism" websites and haven't had any success. I emailed the facility in Tijuana and I got a reply which implied they could help me. I started to feel encouraged but a bit apprehensive, after all Mexico isn't the safest place to travel these days. I did a search for reviews of the place and I only found one which was terrible. I found some other agencies and emailed them for information but all of the replies read that they were very sorry they wouldn't be able to help me. It seems that most of the medical tourism agencies only do business with facilities who specialize in major surgeries or cosmetic surgery.
I was supposed to have had a long overdue doctor's appointment yesterday. I never did get a response from my doctor after leaving two messages and a note. I called the day before my appointment and left yet another message. I wanted to know if she had contacted the Rhumatologist as promised during my last appointment which was about a month ago. If she hadn't, then there would be no point in my coming in and paying $77 for an office visit. Someone from the clinic called yesterday morning to say that my doctor had not spoken to the Rhumatologist because he had been "out of town" but was due back that day. She had planned to call him later in the day, so there was no point in my coming in until she had spoken to him. I made a new appointment. So I wait in weakness and pain for another week.
This has been a hard week. I've been particularly weak and short of breath. My shins and forearms have been very sore, actually every part of my body has been sore. I'm feeling depressed and discouraged. I don't know what to do. Thank goodness I have my crochet, something I can do laying down, or I would probably go insane.
I was supposed to have had a long overdue doctor's appointment yesterday. I never did get a response from my doctor after leaving two messages and a note. I called the day before my appointment and left yet another message. I wanted to know if she had contacted the Rhumatologist as promised during my last appointment which was about a month ago. If she hadn't, then there would be no point in my coming in and paying $77 for an office visit. Someone from the clinic called yesterday morning to say that my doctor had not spoken to the Rhumatologist because he had been "out of town" but was due back that day. She had planned to call him later in the day, so there was no point in my coming in until she had spoken to him. I made a new appointment. So I wait in weakness and pain for another week.
This has been a hard week. I've been particularly weak and short of breath. My shins and forearms have been very sore, actually every part of my body has been sore. I'm feeling depressed and discouraged. I don't know what to do. Thank goodness I have my crochet, something I can do laying down, or I would probably go insane.
Monday, March 7, 2011
Sitting With Old Men and Pigeons
Today my husband took care of our daughter and gave me a "day off". Of course it wasn't really a day off because I used the time to catch up on hotel and personal business. I went outside at one point to check the mail (we don't have mail delivery here so we all have PO boxes). It was a really windy day, actually a gale, but sunny and a pleasant temperature. I would have loved to go for a walk but being that I'm too weak these days, I sat down on a bench near the ocean and watched people walk by. There were a couple of old men sitting on benches nearby also. I felt like I too was old. A couple acquaintances stopped for a quick chat, but eventually continued on. Finally I got up and started home although I had to stop once more from fatigue before getting there. My legs just don't work well anymore. The muscles just burn and begin to give out.
Sunday, March 6, 2011
Next Stop... Tijuana
My husband's mother has been stabilized and discharged from the hospital. She's staying with one of her sons until she's well enough to go home, so my husband has spent several days on the mainland with her. My mother has been visiting and was able to help me care for my daughter as well as help with housework while my husband was gone. I realized suddenly that if my husband were ever gone for an extended period of time, I wouldn't be able to care for our daughter alone in my current condition. After my mom left yesterday I started seriously thinking about having to move closer to my family. I thought with profound sadness that I may have to leave this island that I love so much and move back to NJ, a place I do not love, even though I was born and raised there. This notion filled my heart with such sadness that I cried. I don't know how I would mentally survive such a move back to the Gotham City gloom that is New Jersey.
I have an appointment with my doctor next week. If she gives me the same run-around, I'm moving on to plan B. I've found a treatment center in Tijuana that specializes in fibromyalgia, chronic fatigue, etc. I cannot afford treatment in the US anymore. I had started researching treatment in other countries through the somewhat new field of "Medical Tourism" when I discovered the treatment center in Mexico. I've emailed them for more information.
I have an appointment with my doctor next week. If she gives me the same run-around, I'm moving on to plan B. I've found a treatment center in Tijuana that specializes in fibromyalgia, chronic fatigue, etc. I cannot afford treatment in the US anymore. I had started researching treatment in other countries through the somewhat new field of "Medical Tourism" when I discovered the treatment center in Mexico. I've emailed them for more information.
Wednesday, March 2, 2011
I Can Hardly Lift My Baby Girl
My cousin, who I haven't seen in fifteen years, is visiting us for two days. We've been doing a lot of catching up. She's been telling us about her adventures hiking all over the world and mentioned wanting to do some hiking while she was here on the island. I gave her a hiking map and sent her on her way. She hiked the trails I used to hike regularly but haven't seen the summits of for over a year. I said that I'd love to go with her but that I'm not able to since Fybromyalgia took over my life. I don't know if she really understood but she acknowledged what I said and went on her way. I went home to take a nap since I'd overexerted myself big time walking as far as I had. I viewed her pictures of the Pacific Ocean from the other side of the island when she got back and I knew I may never see those views with my own eyes again.
My husband is back for a few days before he returns to the mainland to take care of things with his mom. She's out of the hospital but not doing very well. I suppose they're just trying to treat her symptoms and pain now.
I took my daughter to the doctor today for her one year check up. My mom, who is visiting from NJ, came with me since I am unable to pick my daughter up and carry her for any length of time. My mom carried her into the exam room and to the scale to have her weighed. I felt like and unfit mother. I can barely take care of my own child. When I found out she'd only gained 1.75 pounds since her last check up three months ago my heart ached. The doctor said she was still within average limits but I felt negligent anyway. I'm beyond frustrated. Will I ever be able to live again?
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?
Thursday, February 24, 2011
One Year Later
In four days my daughter will be one year old. In some ways it's been the shortest year of my life but in some ways it's been the longest. Time spent in pain and sickness goes very slowly. It will also be the unofficial one year anniversary of the intrusion of Fibromyalgia into my life. I think I was symptomatic during my pregnancy too but my doctor just kept writing my intense fatigue off as "a pregnancy thing".
Speaking about my doctor, she has yet to respond to my calls and note. It's been about three weeks now. I made an appointment with her for my daughters one year check-up on March first so she'll have no choice but to talk to me then. My doctor is really a very compassionate dedicated person as well as a skilled physician but working in a small island clinic can be overwhelming for even the best doctor. I think there are only three doctors in the clinic and they are expected to be on-call in the ER on alternating weeks. I guess I'll give her a pass this time.
In the meantime I'm doing ok. As I type this, the joints in my hands are throbbing with a dull pain. I did a really easy Yoga routine this morning. I think it helped a bit. The stretching felt good if nothing else. The fatigue seems to be a tiny bit better this week. Maybe my new healthier diet has something to do with it but it could be a coincidence.
I watched the film Sicko by Michael Moore a few days ago. Wow. I knew about many of the issues covered (regarding the heath care system in the US) but I was still shocked to see how so many lives had been ruined or even had ended due to the criminal system we have which puts money before the health of the citizens of our country. Anyway, I'll get off my soap box for now because I could go on and on. The film got me thinking, it showed actual health care facilities in other countries (France, Canada, Cuba, etc) and spoke with their doctors and patients. The care the patients were receiving was much better than I've ever gotten. In some cases the doctor even visited his patients at home after a procedure. An inhaler canister a US patient in the film paid $120 for (2 per month) was the equivalent of $.05 in Cuba. I was shocked! Why do we allow this exploitation!?? I don't understand (oops stepped up on the soapbox again for a minute - sorry).
I have a friend who just returned from Colombia where she had several very complicated oral surgeries that were going to cost over $100,000 in the US. The final cost for the Colombian procedure, her housing while she was there (two weeks) and airfare together cost only 1/4 the amount it would have cost in the US. Not to mention she was very happy with the work that was done and kept remarking about the kindness of the people there. You can actually hire a sort of "travel agent" to set up procedures for you in other countries including arranging flights, transportation while you're there and housing. The total cost is much less than it would cost in the US and many times the care is better.
If my doctor keeps giving me the run-around, I'm seriously thinking about going to another country to get treated. I'm going to research it for sure.
Speaking about my doctor, she has yet to respond to my calls and note. It's been about three weeks now. I made an appointment with her for my daughters one year check-up on March first so she'll have no choice but to talk to me then. My doctor is really a very compassionate dedicated person as well as a skilled physician but working in a small island clinic can be overwhelming for even the best doctor. I think there are only three doctors in the clinic and they are expected to be on-call in the ER on alternating weeks. I guess I'll give her a pass this time.
In the meantime I'm doing ok. As I type this, the joints in my hands are throbbing with a dull pain. I did a really easy Yoga routine this morning. I think it helped a bit. The stretching felt good if nothing else. The fatigue seems to be a tiny bit better this week. Maybe my new healthier diet has something to do with it but it could be a coincidence.
I watched the film Sicko by Michael Moore a few days ago. Wow. I knew about many of the issues covered (regarding the heath care system in the US) but I was still shocked to see how so many lives had been ruined or even had ended due to the criminal system we have which puts money before the health of the citizens of our country. Anyway, I'll get off my soap box for now because I could go on and on. The film got me thinking, it showed actual health care facilities in other countries (France, Canada, Cuba, etc) and spoke with their doctors and patients. The care the patients were receiving was much better than I've ever gotten. In some cases the doctor even visited his patients at home after a procedure. An inhaler canister a US patient in the film paid $120 for (2 per month) was the equivalent of $.05 in Cuba. I was shocked! Why do we allow this exploitation!?? I don't understand (oops stepped up on the soapbox again for a minute - sorry).
I have a friend who just returned from Colombia where she had several very complicated oral surgeries that were going to cost over $100,000 in the US. The final cost for the Colombian procedure, her housing while she was there (two weeks) and airfare together cost only 1/4 the amount it would have cost in the US. Not to mention she was very happy with the work that was done and kept remarking about the kindness of the people there. You can actually hire a sort of "travel agent" to set up procedures for you in other countries including arranging flights, transportation while you're there and housing. The total cost is much less than it would cost in the US and many times the care is better.
If my doctor keeps giving me the run-around, I'm seriously thinking about going to another country to get treated. I'm going to research it for sure.
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