Fibromyalgia not only affects the pain center in the brain and the central nervous system, it also affects cognitive function. I forget stuff all the time and sometimes it's really hard to concentrate. In the Fibro community, it's often referred to as "fibro fog".
I'm a Navy wife and a homeschooling mom in addition to being a Fibromyalgia patient, and I'm used to being able to handle just about anything that comes my way. So when I first noticed that I was forgetting things and not paying attention, it seriously concerned me. I had to figure out how to "back myself up" so to speak and find ways to remember things that used to come easily to me.
I've been told to just keep a notebook around (which I do) and write sticky notes to remind myself (which I do), but what if you forget that you wrote something down, or forget where you wrote it down? I have paperwork filled out that I'm going to need for the next procedure on my neck around here somewhere and I can't remember where I put it.
In spite of the cognitive difficulties I face (for example I forget what happened on my favorite shows until the following week when they do the "previously on..."), I made it through college and graduated with a 3.9 gpa, and I now have a degree in psychology. But I look back through my work, and I find papers I don't entirely remember writing. Guess it's a good thing I never wanted to be a counselor, huh?
It's not always as rough as it sounds. I have weeks at a time when my cognitive function is good and I am on top of everything and remembering everything. But during the days or weeks that my cognitive function is fuzzy, I forget what I have forgotten. I don't even know what I forgot...because I forgot, or I wasn't paying attention.
Some of the meds my doctors put me on makes it tougher, and often my fuzziest weeks will be as I am adjusting to a new medication. So, I find ways to leave myself clues, and I ask my d.h. to back me up on things....and I've never forgotten to pick up my kid or any of the big things.
Like many other of the lifestyle changes that Fibro brings about, fibro fog just requires a few tweaks in my days...and for the most part, it's a pretty manageable symptom. And even when it's not, I won't remember it.
Sunday, February 6, 2011
Emotional pain = Physical pain
One of the worst things about Fibro is that stress, and hurt, and anger, and fear, and frustration manifest themselves as actual pain. That emotional pain literally ends up hurting.
Yesterday was a rough day for me emotionally. I was hurting and frustrated because I couldn't get my doctors to listen to me as I continued my fight for health care and pain relief. Today that emotional pain has translated into physical pain and it was a high pain day for me. I keep telling myself that I have to stop letting stuff get to me because I always end up paying for it, but I haven't listened yet it seems.
I am a very emotional person by nature anyway, and I get really angry if i think something is unfair. I am the kind of person that gets spun up about my husband being treated poorly at work, or someone acting like a jackass, and I keep trying to talk myself out of my tree and telling myself that I just can't get that pissed off or wound up about things anymore.
It's something I am working on, and I am trying to understand that sometimes people are assholes and all too often it's every man for himself in the world we live in. I hate that we have to use our elbows so much and demand time and space. I'm an only child so I don't understand having to fight so hard for what you want or need sometimes. But I am learning that taking that kind of asshattery personally hurts me, literally.
So today was a pain meds/get in a top tub for awhile/ lay down in the middle of the afternoon and rest kind of day for me. I still manage to get what I need to taken care off, but these are rough days for me.
One of my very favorite songs these days is "Just Breathe" by Pearl Jam. It calms me and reminds me of what's important...and I just breathe and get through the pain.
Yesterday was a rough day for me emotionally. I was hurting and frustrated because I couldn't get my doctors to listen to me as I continued my fight for health care and pain relief. Today that emotional pain has translated into physical pain and it was a high pain day for me. I keep telling myself that I have to stop letting stuff get to me because I always end up paying for it, but I haven't listened yet it seems.
I am a very emotional person by nature anyway, and I get really angry if i think something is unfair. I am the kind of person that gets spun up about my husband being treated poorly at work, or someone acting like a jackass, and I keep trying to talk myself out of my tree and telling myself that I just can't get that pissed off or wound up about things anymore.
It's something I am working on, and I am trying to understand that sometimes people are assholes and all too often it's every man for himself in the world we live in. I hate that we have to use our elbows so much and demand time and space. I'm an only child so I don't understand having to fight so hard for what you want or need sometimes. But I am learning that taking that kind of asshattery personally hurts me, literally.
So today was a pain meds/get in a top tub for awhile/ lay down in the middle of the afternoon and rest kind of day for me. I still manage to get what I need to taken care off, but these are rough days for me.
One of my very favorite songs these days is "Just Breathe" by Pearl Jam. It calms me and reminds me of what's important...and I just breathe and get through the pain.
Health care....and Sick care.
Today's post comes with a lot of frustration. I spent the morning going from my primary care manager (pcm) to my current pain specialist to request records to forward to my soon to be new pain doc, who can't get me in for almost a month. So, all I got was a bunch of running around this morning, not accomplishing anything....not soon enough anyway, and a whole lot of frustration and the reminder that so many people don't understand Fibro, and often don't see it as a real condition.
Fibromyalgia (fi-bro-my-al-ja) can run from mild tenderness to excruciating pain. Symptoms can include irritable bowel issues, muscle weakness and tenderness, fatigue, cognitive "fog", and in my case oxygen issues. (http://www.fmaware.org). Stress exacerbates the condition, which is brought on all too often by others judging and misunderstanding what sufferers go through.
The research is now starting to take off with Fibromyalgia, so to date there is only a few "FDA approved" medicines for Fibro, and essentially no known therapy. I have run the gamut of meds, both designed for Fibro and what they call off label - used to treat something besides the originally intended condition. Unfortunately most of the meds aimed at treating Fibro are SSRIs or SSNRIs: selective serotonin reuptake inhibitors. Some with norepinephrine as well. All of them mess with the chemical balance in one's brain, and none of them like me. They make me worse.
The other options I have tried include nerve pain medications, often used for diabetes nerve pain. Lyrica did work for me, and brought my everyday pain back down to a manageable level, but it boosted my cholesterol up 40 points, and that wasn't okay as a side effect. Neurontin did not agree with me at all.
So, I am back to traditional narcotic pain meds right now, and hoping for a couple of different procedures to cauterize the nerves in my neck. Meanwhile, I am in the process of switching pain management specialists right now because my current doc hasn't provided care. He was supposed to have scheduled my next procedure in 2 1/2 weeks after giving me botox shots in my neck that have made my pain much, much worse. I had 4 shots of botox in my shoulders and neck in the middle of March and have been in a lot of pain since. The procedure was supposed to loosen those muscles, but it has the opposite effect, and no one knows why.
I have spent a good portion of the last 8 years fighting to be heard and treated with dignity, instead of being blown off and told it's all in my head, and all I need is some "gentle exercise". This morning was just a reminder that my work, this blog, and my efforts to raise awareness and understanding ARE needed. Not enough people understand what living with Fibro is like.
There is no normal life....
"There is no normal life, Wyatt, there's just life". - Val Kilmer as Doc Holiday in Tombstone.
Truer words have never been spoken. Everyone has a story to tell. Everyone has some kind of battle they are fighting. For Fibro patients, we're never quite sure what today's battle is going to be.
I had a flare up last week that crossed my eyes. I have about two of those a year. Flare ups are a little different for everyone. Some has more gastrointestinal issues, some have other symptoms, but the one thing that flare ups have in common is the surge in pain levels. Fibro patients in the middle of a flare hurt all over. It's been described by my friend as feeling like a truck ran over her. I usually say I feel like someone pushed me down the stairs. It's our way of trying to make light of it, because there are days that you cannot believe how much pain you're in.
I am in the minority of Fibro patients that also have issues with oxygen consumption. That means that I don't use oxygen efficiently, and passing out in Walmart has been something that was a possibility. In the middle of a flare, it hurts to move, it hurts to breathe deeply, it just hurts.
Because of my oxygen issues, I turn blue when I am cold or stressed. My d.h. has actually watched my fingertips turn blue in the middle of an argument, looked at me, and refused to argue with me anymore. It's not unusual for my fingernails or my toenails to be blue on a daily basis, and I have gone as far as to paint them or wear socks more so no one can see my blue feet. I'm not on in-home oxygen anymore, but I was a little over a year ago. I live in a much warmer climate now so it's a little easier to keep my O2 levels over 93%, and that makes the doctors happy.
Stress prompts flare ups. So do the storms here in Florida. Sometimes, I'm not sure where they come from, but I miss my massage therapist up in Maine who used to be able to touch me and say "Oh, Cris, you're on the verge of a flare...go home and get into bed". I miss my Susan. She brought a lot of peace and comfort into my life.
I have tried everything for pain relief. Osteopathic manipulation, trigger point injections, nerve blocks, acupuncture, reiki, massage therapy, heat, cold, botox injections. I've been through the gamut. These days I rely on heat pads (my herby ricey thing) and pain meds. I'm waiting on a new pain doc who promises new procedures. Cross your fingers.
We have storms coming today and tomorrow in northeast Florida. I went to bed last night expecting to wake up hurting because of them, but I am not in too terrible shape this morning. I feel it coming though. Just under my collar bones is very tender....that means the storms are on their way.
Truer words have never been spoken. Everyone has a story to tell. Everyone has some kind of battle they are fighting. For Fibro patients, we're never quite sure what today's battle is going to be.
I had a flare up last week that crossed my eyes. I have about two of those a year. Flare ups are a little different for everyone. Some has more gastrointestinal issues, some have other symptoms, but the one thing that flare ups have in common is the surge in pain levels. Fibro patients in the middle of a flare hurt all over. It's been described by my friend as feeling like a truck ran over her. I usually say I feel like someone pushed me down the stairs. It's our way of trying to make light of it, because there are days that you cannot believe how much pain you're in.
I am in the minority of Fibro patients that also have issues with oxygen consumption. That means that I don't use oxygen efficiently, and passing out in Walmart has been something that was a possibility. In the middle of a flare, it hurts to move, it hurts to breathe deeply, it just hurts.
Because of my oxygen issues, I turn blue when I am cold or stressed. My d.h. has actually watched my fingertips turn blue in the middle of an argument, looked at me, and refused to argue with me anymore. It's not unusual for my fingernails or my toenails to be blue on a daily basis, and I have gone as far as to paint them or wear socks more so no one can see my blue feet. I'm not on in-home oxygen anymore, but I was a little over a year ago. I live in a much warmer climate now so it's a little easier to keep my O2 levels over 93%, and that makes the doctors happy.
Stress prompts flare ups. So do the storms here in Florida. Sometimes, I'm not sure where they come from, but I miss my massage therapist up in Maine who used to be able to touch me and say "Oh, Cris, you're on the verge of a flare...go home and get into bed". I miss my Susan. She brought a lot of peace and comfort into my life.
I have tried everything for pain relief. Osteopathic manipulation, trigger point injections, nerve blocks, acupuncture, reiki, massage therapy, heat, cold, botox injections. I've been through the gamut. These days I rely on heat pads (my herby ricey thing) and pain meds. I'm waiting on a new pain doc who promises new procedures. Cross your fingers.
We have storms coming today and tomorrow in northeast Florida. I went to bed last night expecting to wake up hurting because of them, but I am not in too terrible shape this morning. I feel it coming though. Just under my collar bones is very tender....that means the storms are on their way.
Begin at the Beginning
So, if I am to share my journey with Fibro with (hopefully) a broader audience, I need to begin at the beginning. I would say...and then when I could to the end, stop (a la Winnie The Pooh), but the end is my end, so there really isn't an end. Not currently right now anyway. Medicine doesn't completely understand Fibromyalgia, so it can't be cured yet.
I have an extremely sensitive system. I always have. If I have a food allergy or sensitivity, I get sick quickly. Just like food poisoning will put me down in no time. As a child, I had migraines and a sun sensitivity. I probably was not much fun. I don't know if the issues I have are genetic or the result of trauma during childhood. Not the 'I fell out of a tree when I was 8' trauma, but the trauma of having parents that were addicts.
I also have hip dysplasia, and the extremely rare fortune of it not being diagnosed until well into my twenties, resulting in a new hip for my 34th birthday. I have spent plenty of time wondering if I was not predisposed to eventually having Fibro because of the strain that the lack of left hip socket put on my body for so many years, but the general consensus is that my Fibro, like most cases, is the result of physical or psychological trauma. I have a very good friend who has Fibromyalgia as the result of a car accident that put her in a wheelchair for a period of time, but how my case came about isn't as easily explained.
In 2001, my husband and I decided to try for our third and final child. I miscarried at 4 weeks in January, and got pregnant again in March. I had an extremely difficult pregnancy with Angelina, ending up in the hospital at 12 weeks or so for hyper emesis, otherwise known as the inability to keep anything down. Right after this hospitalization, my husband was transferred from Hawaii to Florida. So in the middle of being very sick and pregnant, we moved.
Once I got to Florida, I started to have contractions and bleeding and eventually ended up back in the hospital. The short of it is: my placenta had lifted off the uterine wall, causing contractions, breaking my water, leading to a very, very bad infection and I was roughly 12 hours from becoming septic and was losing a lot of blood. Angelina Gabrielle was delivered at 18 weeks and 5 days on Tuesday, July 17, 2001. To save me.
These days, it is generally accepted that was the line in the sand for me. Within a month I started having pain in my arms that couldn't be explained, and symptoms that made no sense then, but now fall under Fibromyalgia. I went on to have one more child (a miracle on these hips) a year and a half later, and a hip replacement in 2007, before finally receiving a diagnosis of Fibro.
Was I always predisposed? Is this the result of Angelina's pregnancy? I guess I'll never know. What do you think?
I have an extremely sensitive system. I always have. If I have a food allergy or sensitivity, I get sick quickly. Just like food poisoning will put me down in no time. As a child, I had migraines and a sun sensitivity. I probably was not much fun. I don't know if the issues I have are genetic or the result of trauma during childhood. Not the 'I fell out of a tree when I was 8' trauma, but the trauma of having parents that were addicts.
I also have hip dysplasia, and the extremely rare fortune of it not being diagnosed until well into my twenties, resulting in a new hip for my 34th birthday. I have spent plenty of time wondering if I was not predisposed to eventually having Fibro because of the strain that the lack of left hip socket put on my body for so many years, but the general consensus is that my Fibro, like most cases, is the result of physical or psychological trauma. I have a very good friend who has Fibromyalgia as the result of a car accident that put her in a wheelchair for a period of time, but how my case came about isn't as easily explained.
In 2001, my husband and I decided to try for our third and final child. I miscarried at 4 weeks in January, and got pregnant again in March. I had an extremely difficult pregnancy with Angelina, ending up in the hospital at 12 weeks or so for hyper emesis, otherwise known as the inability to keep anything down. Right after this hospitalization, my husband was transferred from Hawaii to Florida. So in the middle of being very sick and pregnant, we moved.
Once I got to Florida, I started to have contractions and bleeding and eventually ended up back in the hospital. The short of it is: my placenta had lifted off the uterine wall, causing contractions, breaking my water, leading to a very, very bad infection and I was roughly 12 hours from becoming septic and was losing a lot of blood. Angelina Gabrielle was delivered at 18 weeks and 5 days on Tuesday, July 17, 2001. To save me.
These days, it is generally accepted that was the line in the sand for me. Within a month I started having pain in my arms that couldn't be explained, and symptoms that made no sense then, but now fall under Fibromyalgia. I went on to have one more child (a miracle on these hips) a year and a half later, and a hip replacement in 2007, before finally receiving a diagnosis of Fibro.
Was I always predisposed? Is this the result of Angelina's pregnancy? I guess I'll never know. What do you think?
Life With Fibro....day 3220 or so...
I have Fibromyalgia. I know this because 20 doctors (or so) over the last 8 years (or so) have put me in every medical machine we've ever created, taken a gallon a blood to test, and run every test you or I could think of (and some we wouldn't think of) to arrive at the diagnonsense of Fibro. Basically because I have tested out of everything else there is and continued to tell them I hurt, something is wrong, and no - I'm not crazy.
That's how it is for those of us that suffer from something that the medical world is just beginning to understand. We get told we're nuts, it's in our head, it's just stress. We get accused of being drug seekers or addicts. It's not fun or easy, and it's not something that we chose. But it *is* the life we were given and we find unimaginable strength within ourselves to fight our own brains and try to live some kind of life.
Sometimes, we lose. We have days that we feel sorry for ourselves and ask "why me? what did I do to deserve this?". But for the most part, we find strength we never knew we had. I say -we- because there are about 4 million of us out there and I read the forums and the message boards, and one of my best friends also has Fibro, and the same sentiment is found in most of us.
So, this is my journey through life with something that some people don't understand, in hopes that more people will understand what Fibromyalgia is and what living with it is like. My husband is my caregiver on the really bad days, even if reluctantly at first. Because he, like you would have, didn't understand and wasn't sure he wanted the job. But he has been in and out of the hospital with me and found something within himself that he didn't know was there, or maybe that he might not have otherwise found. But it's there now and he cares for me, and most of his frustration comes from not being able to make it better.
The song "Her Diamonds" by Rob Thomas makes him think of me. Rob is rumored to have written that song for his wife, Mari, who suffers from Lupus, and it does a great job of describing what it's like to be a caregiver for someone who suffers and knowing there's nothing you can do. My d.h. says he always thinks about me when he hears that song.
So, please come along on my journey. Share this with your friends and family. Learn what Fibromyalgia is and what it's like to live with it.
That's how it is for those of us that suffer from something that the medical world is just beginning to understand. We get told we're nuts, it's in our head, it's just stress. We get accused of being drug seekers or addicts. It's not fun or easy, and it's not something that we chose. But it *is* the life we were given and we find unimaginable strength within ourselves to fight our own brains and try to live some kind of life.
Sometimes, we lose. We have days that we feel sorry for ourselves and ask "why me? what did I do to deserve this?". But for the most part, we find strength we never knew we had. I say -we- because there are about 4 million of us out there and I read the forums and the message boards, and one of my best friends also has Fibro, and the same sentiment is found in most of us.
So, this is my journey through life with something that some people don't understand, in hopes that more people will understand what Fibromyalgia is and what living with it is like. My husband is my caregiver on the really bad days, even if reluctantly at first. Because he, like you would have, didn't understand and wasn't sure he wanted the job. But he has been in and out of the hospital with me and found something within himself that he didn't know was there, or maybe that he might not have otherwise found. But it's there now and he cares for me, and most of his frustration comes from not being able to make it better.
The song "Her Diamonds" by Rob Thomas makes him think of me. Rob is rumored to have written that song for his wife, Mari, who suffers from Lupus, and it does a great job of describing what it's like to be a caregiver for someone who suffers and knowing there's nothing you can do. My d.h. says he always thinks about me when he hears that song.
So, please come along on my journey. Share this with your friends and family. Learn what Fibromyalgia is and what it's like to live with it.
Tuesday, March 23, 2010
'Til Tuesday
Tuesday is a rancid bitch. Everyone spends their time focusing on the drudgery of Monday, and they don't notice her creeping up. She hides behind Monday and spits in your face when you least expect it. Don't believe me?
It's okay. Most people don't. Not until they've spent a couple of hundred Tuesdays with me, then it just dawns of them and I get the inevitable "oh. my.god. you were right. Tuesday has it out for you".
I'm not quite sure what I ever did to her. I was born on a Tuesday. Maybe that was it? I can't prove it off hand, but I think my mother and my grandmother were born on Tuesdays too. And I can tell you that all of my children were born on Tuesday, save the last one. That's why she's different. I walked through four gates of Hell to have her, and she was born on a Sunday night. Out of five pregnancies, the first one was born on her due date on Tuesday; the second was born five days late on a Tuesday; the third miscarried very early on a Tuesday; and the fourth, my Angie, was born too soon on a Tuesday. You could argue that the blessings of my children negate the evil Tuesday, but then you've obviously never endured 28 hours of back labor.
I also woke up on Tuesday, my 34th birthday with a new left hip.
It's not always the big things though. Sometimes Tuesday kicks my ass with simple, mundane, everyday things like needing to get gas and it's rainy and windy that day. If I am going to find a way to embarrass myself or put my foot in my mouth, it'll probably be on a Tuesday.
The thing is, I'm afraid my Tuesdays are contagious. I might invite someone to spend a couple of hundred Tuesdays to actually witness the assticity of it all with me, but then they start having Tuesdays too. Their former enemy, Monday, retreats slightly, and realizes that bitch is horning in on her turf, screwing up people's days.
Don't be afraid of Mondays, especially if you're close to me. Monday is just amateur fuckery. Things like not having your car start after the weekend is easy, and Monday coasts through it. But the scheming bitch on Tuesday really plans how to screw up the rest of your week.
Don't be afraid of Monday. Be afraid of Tuesday. She's rancid bitch.
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