Can anyone say suck? And I'm not talking about a tiny little suck. I'm talking about a major suck, like through one of those little red coffee-stirrer things when you drinking a super thick milkshake.
Suck IT, is what I should say.
I have come to the realization today that I am not rational, cooperative, or even probably stable right now. But then again I'm not that crazy about the people supposedly helping me either.
People I consider helpful: my mom, my daughter, on certain days my husband, some of my friends, and my therapist. And the nice bartender girl who works at the bar under my mom's office. She makes me up weird cocktails and is nice to talk with.
People I currently consider unhelpful: every freaking doctor I have working on my case, the pilates people who busted up my back and shoulder, some days my husband (although not very often), my dad (who can't help himself), my son (again, can't help himself), and some of my friends who think tough love is a good approach to curing fibro.
I know I'm a crabby bitch these days. I'm even bitchy to myself. Bitch, bitch, bitch. I'm good at it. What's worse is I feel entitled. I hurt. I am always hurting somewhere on my body. There is literally never a day or a moment that some part of me doesn't hurt. It just hurts in different levels on different days.
I saw my rheumatologist today, and within five minutes I had crossed my arms and was done talking. Fortunately my mother was with me so she was able to carry on a decent conversation with the woman. The doctor referred to me as not "buying in" to the treatment she's giving me, and that I've had symptoms for twenty five years, so they're not going to go away overnight.
Duh.
But it would help if one of these people who keeps telling me cymbalta would be helpful would say, oh, prescribe it. It would be helpful if I didn't have to follow up on making appointments four hundred times and that I could just show up when they say so.
I've probably said it before, but I've considered voluntarily committing myself to a hospital for awhile. I just don't trust that I'd get the care I would need. And I'd be cut off from the people and things that ARE helping me--my family, my friends, blogging, writing, my therapist. Law and Order Criminal Intent.
My rheumatologist is right in some aspects. I do want to feel better. I do want it to happen faster. I am angry at the turtle speed people seem to be moving at. And I do want medication that makes me feel better. Honestly, there are some days I think the Nucynta helps some, but more that I don't feel a difference. I go back to see the psychiatrist next week, and I'll be out of the medication way before then, so I guess I'll know whether it's working or not.
One of my friends talked about the importance of changing my attitude, and I thinks she's right. It's hard, though, to have a positive outlook when you're in pain. But I'll list three things here I'm thankful for and/or like.
1. My kids and my family. If it weren't for them, there wouldn't be any point.
2. My dog. Every day she makes me laugh or at the very least, smile. She curls up with me, likes to play with her toys, and lives her life fully. You can learn a lot from a dog. I think there are books out there about it too.
3. The garden behind our house. It's a Japanese-style garden with a Pagoda in the middle of it. It's very pretty and right off the river. It makes a lovely place to walk and wander and just think. I may try to do that one day.
So that makes three. All I have in me today. My back hurts and I'm so over the pain. I may try to get in to see the pain management doctor sooner than when she has scheduled.
And that's all today, folks.
Monday, May 9, 2011
Sunday, May 8, 2011
My truck ran over me
Yesterday I was feeling better and was even inspired. I taught my last class of the semester and really enjoyed my students' presentations. I did the grocery shopping and even cooked chili for dinner.
I should have known it would come back to haunt me. It always does. This morning I woke up in extreme pain in my hips. I don't think I've ever felt pain that intense in my hips. It hurt to walk. It even hurt to roll over or lay still. I took my medication and went back to sleep. When I woke up, the pain was a little less than before and I was grateful.
I was finally able to do some grading today, and the pain has come off and on, in waves, over my hips and my shoulders. I've had reflux horribly this afternoon, and just took something to help with that. I also ate a container of Chobani yogurt, which seems to settle just about any stomach upset I have.
I am becoming more aware of the effect certain foods have on my illness. I've learned to keep greek yogurt around at all times. If I have nausea, I eat the yogurt and rejoice in the fact that the nausea disappears. It also helps with regularity (ahem) and I'm noticing now that it's helping with the acid refulx as well. Many people choose to eat it with a small bit of honey. I haven't been so brave--I get the fruit in the bottom kind and am happy.
About a month ago, I began a path to becoming a vegetarian. Not vegan, mind you--I will still eat eggs and cheese and other dairy products. Giving up yogurt at this point would be just ridiculous. But a month ago I gave up beef, and I plan to give up pork before the end of the month. I have vowed that I will allow myself one trip to Goden Corral for a bacon pigout before I give it up completely. I do move cruncy, crispy bacon.
I meet with my rheumatologist tomorrow. I'm not sure why, except so she can assess my pain and again refuse to treat it.
Well, I think I"m falling asleep now, so maybe I'll take a nap. Sounds like the best idea I've had all day.
I should have known it would come back to haunt me. It always does. This morning I woke up in extreme pain in my hips. I don't think I've ever felt pain that intense in my hips. It hurt to walk. It even hurt to roll over or lay still. I took my medication and went back to sleep. When I woke up, the pain was a little less than before and I was grateful.
I was finally able to do some grading today, and the pain has come off and on, in waves, over my hips and my shoulders. I've had reflux horribly this afternoon, and just took something to help with that. I also ate a container of Chobani yogurt, which seems to settle just about any stomach upset I have.
I am becoming more aware of the effect certain foods have on my illness. I've learned to keep greek yogurt around at all times. If I have nausea, I eat the yogurt and rejoice in the fact that the nausea disappears. It also helps with regularity (ahem) and I'm noticing now that it's helping with the acid refulx as well. Many people choose to eat it with a small bit of honey. I haven't been so brave--I get the fruit in the bottom kind and am happy.
About a month ago, I began a path to becoming a vegetarian. Not vegan, mind you--I will still eat eggs and cheese and other dairy products. Giving up yogurt at this point would be just ridiculous. But a month ago I gave up beef, and I plan to give up pork before the end of the month. I have vowed that I will allow myself one trip to Goden Corral for a bacon pigout before I give it up completely. I do move cruncy, crispy bacon.
I meet with my rheumatologist tomorrow. I'm not sure why, except so she can assess my pain and again refuse to treat it.
Well, I think I"m falling asleep now, so maybe I'll take a nap. Sounds like the best idea I've had all day.
Saturday, May 7, 2011
Day 360--Keep on truckin'
Today was my last day teaching my adjunct college classes. I had trouble sleeping last night and didn't go to bed until around 2 a.m. Then I apparently slept through my alarm a few times, so when I finally heard it, I had about ten minutes to get ready.
Certain times of day seem to be worse for this illness. First thing in the morning is almost always bad. I'm either nauseated, have a headache, am aching, or a combination of the above. Sometimes in the middle of the night I'll have IBS symptoms, but usually that happens more during the day.
The good part about teaching is that it keeps me busy doing something with my mind that isn't physically painful, so a lot of times I forget about the pain for awhile, or it seems to lessen. For that, I'm grateful. I have been debating about applying for a assistant director position for a nonprofit center that works with children with disabilities and supports people with disabilities. I am hoping that if I can get a job there they'll be understanding of my illness, since they employ people with disabilities.
After my class, I did some grocery shopping, then came home and took a nap. I felt a lot better after my nap, although I was still having pain. I have found the Nucynta the doctor prescribed to be helpful overall, although it's incredibly expensive and makes me sleepy. I also don't think it is as effective on pain as vicodin was. I'm fairly certain that when I go back to see her in a week, she will want me to continue with the Nucynta, and I'm not crazy about that idea. Expense aside, it's not as effective and I have already had one hallucination on it. It was minor and not particularly scary--just more disturbing than anything else. I was writing on my computer and looked up, and saw a large (five feet maybe?) feather about ten feet away, and then it disappeared.Like I said, not scary, but not desired either.
On Monday I see my rheumatologist. Hopefully she will prescribe more muscle relaxants for me. I have not found the patches (Flector) to be that successful because most of my pain can't be narrowed down to a 3x5 area. I do find it helpful on days I have to work, when my shoulder is particularly painful. The pain mgt doctor prescribed thermacare, and I've used it once when I was having tremendous pain in my shoulder. That was helpful too.
I will be calling the psychiatrist this week to make an appointment to straighten out my meds. I'm hoping he will try me on Cymbalta, which is proven to be effective not only for depression but for fibromyalgia as well. My current antidepressant, Celexa, worked for a long time but eventually stopped being as effective as I think it should be. I also am not happy with Klonopin for my anti-anxiety medication. It does not work at all for me. To me, it reacts as a placebo would. I can't even tell a difference that I've taken it, and that's incredibly frustrating when you're in the middle of an anxiety attack.
I have tremendous problems with anxiety and probably always have; I just didn't know what it was. I remember thinking as a child that I had lots of "butterflies" in my stomach. I didn't understand that the feeling I had was anxiety and that I had far more of it than most people. I do have occasional anxiety attacks, which I consider to be far different than dealing with plain anxiousness. When I have an anxiety attack, I feel like I'm having a heart attack. I sweat, shake, and even have trouble speaking. About a week ago I had one and could barely get out the need for medication. Fortunately, my mother was there and helped guide me through some deep breathing exercises. Those were helpful in regaining some control, but the possibility it could return at any moment doesn't sit well with me.
I have wondered quite a bit what the rheumatologist wants with me on Monday. I'm not anticipating a long visit. She may test my vitamin D again, which I'm low in, and to be honest haven't taken it regularly. I forget, since i only take it twice a week, and I'm sure she'll nail me for it. I'll have to do better.
At least today has not been a very painful day, and I'm thankful for that.
Certain times of day seem to be worse for this illness. First thing in the morning is almost always bad. I'm either nauseated, have a headache, am aching, or a combination of the above. Sometimes in the middle of the night I'll have IBS symptoms, but usually that happens more during the day.
The good part about teaching is that it keeps me busy doing something with my mind that isn't physically painful, so a lot of times I forget about the pain for awhile, or it seems to lessen. For that, I'm grateful. I have been debating about applying for a assistant director position for a nonprofit center that works with children with disabilities and supports people with disabilities. I am hoping that if I can get a job there they'll be understanding of my illness, since they employ people with disabilities.
After my class, I did some grocery shopping, then came home and took a nap. I felt a lot better after my nap, although I was still having pain. I have found the Nucynta the doctor prescribed to be helpful overall, although it's incredibly expensive and makes me sleepy. I also don't think it is as effective on pain as vicodin was. I'm fairly certain that when I go back to see her in a week, she will want me to continue with the Nucynta, and I'm not crazy about that idea. Expense aside, it's not as effective and I have already had one hallucination on it. It was minor and not particularly scary--just more disturbing than anything else. I was writing on my computer and looked up, and saw a large (five feet maybe?) feather about ten feet away, and then it disappeared.Like I said, not scary, but not desired either.
On Monday I see my rheumatologist. Hopefully she will prescribe more muscle relaxants for me. I have not found the patches (Flector) to be that successful because most of my pain can't be narrowed down to a 3x5 area. I do find it helpful on days I have to work, when my shoulder is particularly painful. The pain mgt doctor prescribed thermacare, and I've used it once when I was having tremendous pain in my shoulder. That was helpful too.
I will be calling the psychiatrist this week to make an appointment to straighten out my meds. I'm hoping he will try me on Cymbalta, which is proven to be effective not only for depression but for fibromyalgia as well. My current antidepressant, Celexa, worked for a long time but eventually stopped being as effective as I think it should be. I also am not happy with Klonopin for my anti-anxiety medication. It does not work at all for me. To me, it reacts as a placebo would. I can't even tell a difference that I've taken it, and that's incredibly frustrating when you're in the middle of an anxiety attack.
I have tremendous problems with anxiety and probably always have; I just didn't know what it was. I remember thinking as a child that I had lots of "butterflies" in my stomach. I didn't understand that the feeling I had was anxiety and that I had far more of it than most people. I do have occasional anxiety attacks, which I consider to be far different than dealing with plain anxiousness. When I have an anxiety attack, I feel like I'm having a heart attack. I sweat, shake, and even have trouble speaking. About a week ago I had one and could barely get out the need for medication. Fortunately, my mother was there and helped guide me through some deep breathing exercises. Those were helpful in regaining some control, but the possibility it could return at any moment doesn't sit well with me.
I have wondered quite a bit what the rheumatologist wants with me on Monday. I'm not anticipating a long visit. She may test my vitamin D again, which I'm low in, and to be honest haven't taken it regularly. I forget, since i only take it twice a week, and I'm sure she'll nail me for it. I'll have to do better.
At least today has not been a very painful day, and I'm thankful for that.
Friday, May 6, 2011
Day 361
Yesterday I should have written but I was too busy crying and arguing with some friends of mine. They all thought that because I've had unseemly thoughts I should lock myself in a psychiatric hospital. I'm not about to do such a thing for several reasons.
First, I do not plan on killing myself. I'll admit that I have thought about it. I've also thought about running away to Disneyworld, moving back to my old town, becoming a rock star, running away with an online friend of mine, and becoming a buddhist follower. Just because I have the thought doesn't mean I'm going to do it.
Second, having struggled with depression for most of my life (I was first diagnosed at age eleven), I am a firm believer that each person has the right to choose whether to continue to live today or end their life if they see fit. There are some people who cannot bear the pain of their lives for whatever reason, and in certain situations it would be cruel to force them to continue to live when there is no end in sight to their pain (either physical or emotional). I do not count myself in this category but I know and have known people in this category. While I believe that some people do need to be hospitalized to become stable, I don't think that every person who has a suicidal thought fits this category. I can just as easily imagine myself locked up for fantasizing I've run away with Detective Goren on Criminal Intent and we are now living a life of love and sex and baby making. Or taking up residence in Disney's Animal Kingdom and visiting the parks for weeks until somebody finds me and kicks me out, or I get employed.
The thing that most hurt me was being accused of trying to manipulate people when I shared my feelings. Look, people, sometimes people say things you don't want to hear. Sometimes they say things that scare you or freak you out or even make you think, "eww, gross, really?". Does mention of suicide always mean either danger or manipulation? Or is it possible that, just like we have other fleeting thoughts and feelings, the thought or feeling of being suicidal might be fleeting too?
Taboo, for sure. Painful, absolutely. Do I regret bringing it up and being honest? You bet I do. There's a reason that people who commit suicide often do it in the dark, with no warning. Because talking about the feelings behind it often send off the mark of a five alarm fire. How terrible that a person have that thought!
If I had a dollar for every time I've thought about suicide I'd have...well, I'd have enough for that disney vacation, anyway. But I also know my own limits, and I know my own values. My children lost their birth parents at a very young age, and I will never willingly force them to go through a loss like that again.
Chronic pain is linked to a lot of things, including child abuse, depression, and anxiety. I fit all three categories. And when you hurt all over, day after day, you start to wonder why you should continue to hurt, or to live, since you can't contribute. One of the hardest parts of this illness has been not being able to do the things I used to do with my kids. That has been a hard loss, and one I regret regularly. And yes, some days I wonder how useful I am to my children. Writing helps me remember why I'm useful, and how I can make a difference. The belief that perhaps someday, someone will be able to read this and find comfort that they aren't alone.
Today has been an exhausting day for me, and I'm not sure why. I just know I've been incredibly tired all day. I've been anxious and upset as well. But tomorrow will bring a new day, a new time. And maybe I'll feel better. Maybe I won't...but I'll be around to find out.
First, I do not plan on killing myself. I'll admit that I have thought about it. I've also thought about running away to Disneyworld, moving back to my old town, becoming a rock star, running away with an online friend of mine, and becoming a buddhist follower. Just because I have the thought doesn't mean I'm going to do it.
Second, having struggled with depression for most of my life (I was first diagnosed at age eleven), I am a firm believer that each person has the right to choose whether to continue to live today or end their life if they see fit. There are some people who cannot bear the pain of their lives for whatever reason, and in certain situations it would be cruel to force them to continue to live when there is no end in sight to their pain (either physical or emotional). I do not count myself in this category but I know and have known people in this category. While I believe that some people do need to be hospitalized to become stable, I don't think that every person who has a suicidal thought fits this category. I can just as easily imagine myself locked up for fantasizing I've run away with Detective Goren on Criminal Intent and we are now living a life of love and sex and baby making. Or taking up residence in Disney's Animal Kingdom and visiting the parks for weeks until somebody finds me and kicks me out, or I get employed.
The thing that most hurt me was being accused of trying to manipulate people when I shared my feelings. Look, people, sometimes people say things you don't want to hear. Sometimes they say things that scare you or freak you out or even make you think, "eww, gross, really?". Does mention of suicide always mean either danger or manipulation? Or is it possible that, just like we have other fleeting thoughts and feelings, the thought or feeling of being suicidal might be fleeting too?
Taboo, for sure. Painful, absolutely. Do I regret bringing it up and being honest? You bet I do. There's a reason that people who commit suicide often do it in the dark, with no warning. Because talking about the feelings behind it often send off the mark of a five alarm fire. How terrible that a person have that thought!
If I had a dollar for every time I've thought about suicide I'd have...well, I'd have enough for that disney vacation, anyway. But I also know my own limits, and I know my own values. My children lost their birth parents at a very young age, and I will never willingly force them to go through a loss like that again.
Chronic pain is linked to a lot of things, including child abuse, depression, and anxiety. I fit all three categories. And when you hurt all over, day after day, you start to wonder why you should continue to hurt, or to live, since you can't contribute. One of the hardest parts of this illness has been not being able to do the things I used to do with my kids. That has been a hard loss, and one I regret regularly. And yes, some days I wonder how useful I am to my children. Writing helps me remember why I'm useful, and how I can make a difference. The belief that perhaps someday, someone will be able to read this and find comfort that they aren't alone.
Today has been an exhausting day for me, and I'm not sure why. I just know I've been incredibly tired all day. I've been anxious and upset as well. But tomorrow will bring a new day, a new time. And maybe I'll feel better. Maybe I won't...but I'll be around to find out.
Wednesday, May 4, 2011
Day 363
I'm counting backwards.
It just occurred to me that if anyone does indeed read this, they'll probably think it's strange that I would count backwards. Why? Because I'm counting off a year. Counting down to day one, to see if this illness still has such a powerful grip on me after 365 days.
When I first started this blog, I was on FMLA for two reasons--one was to care for my son, and the other was to care for myself. I was burned out and miserable and having an intensely difficult time at work. I also wanted the opportunity to talk about a certain TV show which for now shall remain nameless (but I will say since they brought Goren and Eames back they both are better than ever). But like most things, life changes.
My only rule with this blog is to write honestly. I think by this time I've lost almost all of the five or so readers I had generated. I mean honestly, who wans to read the rantings of a person in pain?
I see this as a way to document the complexities of this condition as well as the difficulties in treating it.
As I was talking with a friend yesterday, I started counting of the number of doctors, specialists, and other professionals I have to see to treat this illness. First, there's my PCP, who's supposed to be managing it all but I'm not sure really knows her ass from her elbow. My rheumatologist, who diagnosed me, is more helpful in general but doesn't really deal with any of it but the diagnosis. My pain management doctor, who I ranted about yesterday in her lack of belief of narcotics, even when they're useful. Then there's my therapist. I have to give a shout out to her because I actually like her. The hour I spend with her each week is probably the fastest hour of my week. She wants me to keep a dream journal, which I haven't been doing, but I do wake up with weird, random songs in my head. This morning's theme was "The Girl Is Mine" by Paul McCartney and Michael Jackson. Keep in mind Michael Jackson, from my perspective, was a pervert, so even though I recognize he had an incredible musical gift I'm not overly pleased to be singing any song by him in my head. Especially this one, which is like bubble gum pup music. Blech.
Okay, back to treatments. There's also a physical therapist, a massage therapist, ultrasound and x-ray technicians and phlebotomists (those are blood people--I, like many fibro patients, have low Vitamin D levels). There's the restorative yoga teacher. Oh, and a psychiatrist to mess with all my meds.
I don't know how many people that is but it sounds like a full time job to me, and feels like it too. These days I'm overwhelmed at going to one appointment, never mind two or four. I'm tired and I want to sleep. My arms and shoulders hurt. If it were up to me today, I'd be going back to sleep, but I have to get a couple things accomplished, so too bad for me.
Today seems to be one of exhaustion rather than so much pain, so it's a good day. Days in which I can hardly stay awake are good days, because the pain seems to lessen. I still have pain in my neck and shoulder lingering from yesterday, but overall, I'd really just like to take a nap.
It just occurred to me that if anyone does indeed read this, they'll probably think it's strange that I would count backwards. Why? Because I'm counting off a year. Counting down to day one, to see if this illness still has such a powerful grip on me after 365 days.
When I first started this blog, I was on FMLA for two reasons--one was to care for my son, and the other was to care for myself. I was burned out and miserable and having an intensely difficult time at work. I also wanted the opportunity to talk about a certain TV show which for now shall remain nameless (but I will say since they brought Goren and Eames back they both are better than ever). But like most things, life changes.
My only rule with this blog is to write honestly. I think by this time I've lost almost all of the five or so readers I had generated. I mean honestly, who wans to read the rantings of a person in pain?
I see this as a way to document the complexities of this condition as well as the difficulties in treating it.
As I was talking with a friend yesterday, I started counting of the number of doctors, specialists, and other professionals I have to see to treat this illness. First, there's my PCP, who's supposed to be managing it all but I'm not sure really knows her ass from her elbow. My rheumatologist, who diagnosed me, is more helpful in general but doesn't really deal with any of it but the diagnosis. My pain management doctor, who I ranted about yesterday in her lack of belief of narcotics, even when they're useful. Then there's my therapist. I have to give a shout out to her because I actually like her. The hour I spend with her each week is probably the fastest hour of my week. She wants me to keep a dream journal, which I haven't been doing, but I do wake up with weird, random songs in my head. This morning's theme was "The Girl Is Mine" by Paul McCartney and Michael Jackson. Keep in mind Michael Jackson, from my perspective, was a pervert, so even though I recognize he had an incredible musical gift I'm not overly pleased to be singing any song by him in my head. Especially this one, which is like bubble gum pup music. Blech.
Okay, back to treatments. There's also a physical therapist, a massage therapist, ultrasound and x-ray technicians and phlebotomists (those are blood people--I, like many fibro patients, have low Vitamin D levels). There's the restorative yoga teacher. Oh, and a psychiatrist to mess with all my meds.
I don't know how many people that is but it sounds like a full time job to me, and feels like it too. These days I'm overwhelmed at going to one appointment, never mind two or four. I'm tired and I want to sleep. My arms and shoulders hurt. If it were up to me today, I'd be going back to sleep, but I have to get a couple things accomplished, so too bad for me.
Today seems to be one of exhaustion rather than so much pain, so it's a good day. Days in which I can hardly stay awake are good days, because the pain seems to lessen. I still have pain in my neck and shoulder lingering from yesterday, but overall, I'd really just like to take a nap.
Tuesday, May 3, 2011
It's 1:30 a.m and I'm...
writing in this blog.
Even though I wrote earlier today I felt the need to continue. Writing has always been an outlet for me and I think I've got a lot to get out.
When I went to the pain management doctor yesterday, I became aware once I left the extent to which pain is clouding my memory. I couldn't remember what drugs she had prescribed, nor how I was supposed to use them. In fact, I was so distraught that I spend the entire ride back to my house screeching at my mother about how I hate doctors and they all suck. I do remember that.
I still don't understand the purpose of this crazy medicine she prescribled. Way too expensive amd much less effective. I figure I'll give her another day before I call and tell her it's not working.
I went to see my therapist today. She wanted to delve deep into my childhood, which I'm used to with therapists. Sometimes I feel like I should just write a summary for them so that they can read it and know ahead of time what they're dealing with. It became clear through our conversation that she believes the very beginnings of this pain are linked to sexual abuse I suffered at the hands of a family friend when I was a child. I'm well aware of the mind-body connection and how people who are abused as children are much more likely to suffer from chronic pain as adults. Of course everything she asked me caused me to draw a parallel to my own children, or a story about my own children, or a worry about my own children.
When I first became a mother I was thrilled. Don't get me wrong, I still am thrilled and proud of my kids. But very few days pass that I don't wonder what it would be like to have my own child. Would it be a roly-poly baby? A happy one who melts me with a smile? Or a colicky, cranky baby who can never be soothed?
Often these days I find myself to be that colicky, cranky person who can't be soothed, despite the efforts of my loved ones and friends. I can imagine it's hard to know what to say. You can only tell someone so many times that you hurt enough to consider suicide before they don't know how to respond to you. Avoidance is the number one tactic. Sometimes I wonder if I just disappeared how long I could be gone before anybody noticed.
I met with an old friend today for coffee, and we had a pleasant conversation. She has always accepted me for whoever I was in the moment, which is probably one of the biggest reasons I love her. You don't go through life finding many people willing to stick through shit like that. Sometimes you think you have found one, but something happens and everything crumbles like a pile of cards. Nothing hurts more than to think you've built some kind of shelter only to have it cave in at the first gust of wind.
I sometimes find it funny that I write on here. I question the point of a blog, especially since nobody reads it and I could probably write Mary Had A Little Lamb in the middle of every sentence and nobody would know. But I would know. And I promised myself this woud be an honest place for me. So it's raw, like the rest of me right now--raw and painful. I counted up seven specialists today that I have to see, and I think I left at leasst three off that list. The thought alone is exhausting.
So tI guess I'll wrap this up. It's nearly two a.m. and I wasn't meant to stay up all night. This is day 363, I guess but Il write that entry later. Right now I'm just going to try to block out the pain, and go to sleep. I guess we'll see.
Even though I wrote earlier today I felt the need to continue. Writing has always been an outlet for me and I think I've got a lot to get out.
When I went to the pain management doctor yesterday, I became aware once I left the extent to which pain is clouding my memory. I couldn't remember what drugs she had prescribed, nor how I was supposed to use them. In fact, I was so distraught that I spend the entire ride back to my house screeching at my mother about how I hate doctors and they all suck. I do remember that.
I still don't understand the purpose of this crazy medicine she prescribled. Way too expensive amd much less effective. I figure I'll give her another day before I call and tell her it's not working.
I went to see my therapist today. She wanted to delve deep into my childhood, which I'm used to with therapists. Sometimes I feel like I should just write a summary for them so that they can read it and know ahead of time what they're dealing with. It became clear through our conversation that she believes the very beginnings of this pain are linked to sexual abuse I suffered at the hands of a family friend when I was a child. I'm well aware of the mind-body connection and how people who are abused as children are much more likely to suffer from chronic pain as adults. Of course everything she asked me caused me to draw a parallel to my own children, or a story about my own children, or a worry about my own children.
When I first became a mother I was thrilled. Don't get me wrong, I still am thrilled and proud of my kids. But very few days pass that I don't wonder what it would be like to have my own child. Would it be a roly-poly baby? A happy one who melts me with a smile? Or a colicky, cranky baby who can never be soothed?
Often these days I find myself to be that colicky, cranky person who can't be soothed, despite the efforts of my loved ones and friends. I can imagine it's hard to know what to say. You can only tell someone so many times that you hurt enough to consider suicide before they don't know how to respond to you. Avoidance is the number one tactic. Sometimes I wonder if I just disappeared how long I could be gone before anybody noticed.
I met with an old friend today for coffee, and we had a pleasant conversation. She has always accepted me for whoever I was in the moment, which is probably one of the biggest reasons I love her. You don't go through life finding many people willing to stick through shit like that. Sometimes you think you have found one, but something happens and everything crumbles like a pile of cards. Nothing hurts more than to think you've built some kind of shelter only to have it cave in at the first gust of wind.
I sometimes find it funny that I write on here. I question the point of a blog, especially since nobody reads it and I could probably write Mary Had A Little Lamb in the middle of every sentence and nobody would know. But I would know. And I promised myself this woud be an honest place for me. So it's raw, like the rest of me right now--raw and painful. I counted up seven specialists today that I have to see, and I think I left at leasst three off that list. The thought alone is exhausting.
So tI guess I'll wrap this up. It's nearly two a.m. and I wasn't meant to stay up all night. This is day 363, I guess but Il write that entry later. Right now I'm just going to try to block out the pain, and go to sleep. I guess we'll see.
364 Days
Yesterday I blogged about something I don't think I've hit on before--the pain of fibromyalgia.
I've decided I'm going to blog on this subject for one year, every day. See what works and what doesn't. See if I'm still sitting in the same place a year from now.
Today I work up with stiffness, soreness, and pain in my left shoulder and that side of my neck. That's unusual for me, because usually my pain is on my right side. By noon it had moved and the pain was being shared between both sides of my shoulders. How nice of it to share. @@
They are currently treating me with flexeril, a muscle relaxer, and the pain management specialist I went to yesterday started me on some new pain narcotic that starts with an N. Nucynta or something. All I know is it makes me feel foggy, dizzy, and tired but does nothing for the pain. It's incredibly expensive. I really don't understand why I can't just have Norco. I get that it's an addictive drug, but honestly I'd rather deal with the addiction concerns than live in pain.
There are days, like yesterday, that the pain is so acute I can't get out of bed, or I cry all day. Yesterday was a crying day. I cried for six hours or more, and now I'm crying again. It isn't that the pain in and of itself is so horrific. It's the day in, day out of pain that never lets up, that robs you of your life, that keeps you from doing the things you used to love.
I'd compare the pain I have today to severe whiplash from an auto accident. It's painful to turn my head in any direction, including to drive. There are some days I have migraines--pain gripping the entire side of my face that won't let go. But the worst is my shoulders. They hurt all. the. time. The pain is incredibly intense and I have only found two ways to improve it. One is, of course, the narcotic vicodin, which does relieve my pain tremendously. The other is massage, which removes it for a few hours before the muscles begin to spasm and contract again. There have been times my shoulders have hurt so badly I have been unable to wear a bra, forcing me to stay inside in a tee shirt.
My lower back is known to give out and often aches if I'm on my feet too long or walking in the wrong kind of shoes or wearing the wrong kind of clothing, even. Pain in my back is common, and probably at least once every six months to a year now my back goes completely out, meaning I cannot stand straight at all and am in horrific pain if I try to stand, period.
I used to be the kind of person who agreed that narcotics should hardly ever be used, and that lots of people overprescribed them and overused them. I'm not a drug addict, do not use illegal drugs, nor do I smoke. On the rare occasions that I drink, I generally stop after one or two. However, the last several months have been life-altering for me in how I view these drugs. When I do not have an effective pain reliever to make living more bearable, I am not above going to a bar and having a couple of drinks. I've always heard it said that "alcohol masks the pain" and it does, just as vicodin does. The fact of the matter is that while certain medical conditions do have cures, there is no cure for fibromyalgia. I have begun treatment regimens but it's slow going and much harder to do when I'm in constant pain.
Finding doctors who are familiar with fibro and understand--REALLY understand--the depth of the pain is hard. I frequently find myself thinking of ways to die on days when the pain drags on and on. I don't think most people understand the frustration of that feeling, the desperation that one feels to just rid oneself of the pain. Anything--even death--sounds better than continuing in a life that is painful and has stolen your body, your livelihood, even your mind. There's a condition called "fibro fog" that is common for fibro patients. Between the depression, anxiety, and pain, it's often difficult to think clearly. The exhaustion that goes along with the illness makes it hard as well.
I have, at least temporarily, lost my livelihood because of this illness. I have lost time with my children as well as their respect and admiration. I have lost huge parts of myself to an illness that nobody understands. And I'm about to fall asleep writing. It's 1:24 p.m., and I can't go another minute without sleep. Damn this illness. Damn it to hell.
I've decided I'm going to blog on this subject for one year, every day. See what works and what doesn't. See if I'm still sitting in the same place a year from now.
Today I work up with stiffness, soreness, and pain in my left shoulder and that side of my neck. That's unusual for me, because usually my pain is on my right side. By noon it had moved and the pain was being shared between both sides of my shoulders. How nice of it to share. @@
They are currently treating me with flexeril, a muscle relaxer, and the pain management specialist I went to yesterday started me on some new pain narcotic that starts with an N. Nucynta or something. All I know is it makes me feel foggy, dizzy, and tired but does nothing for the pain. It's incredibly expensive. I really don't understand why I can't just have Norco. I get that it's an addictive drug, but honestly I'd rather deal with the addiction concerns than live in pain.
There are days, like yesterday, that the pain is so acute I can't get out of bed, or I cry all day. Yesterday was a crying day. I cried for six hours or more, and now I'm crying again. It isn't that the pain in and of itself is so horrific. It's the day in, day out of pain that never lets up, that robs you of your life, that keeps you from doing the things you used to love.
I'd compare the pain I have today to severe whiplash from an auto accident. It's painful to turn my head in any direction, including to drive. There are some days I have migraines--pain gripping the entire side of my face that won't let go. But the worst is my shoulders. They hurt all. the. time. The pain is incredibly intense and I have only found two ways to improve it. One is, of course, the narcotic vicodin, which does relieve my pain tremendously. The other is massage, which removes it for a few hours before the muscles begin to spasm and contract again. There have been times my shoulders have hurt so badly I have been unable to wear a bra, forcing me to stay inside in a tee shirt.
My lower back is known to give out and often aches if I'm on my feet too long or walking in the wrong kind of shoes or wearing the wrong kind of clothing, even. Pain in my back is common, and probably at least once every six months to a year now my back goes completely out, meaning I cannot stand straight at all and am in horrific pain if I try to stand, period.
I used to be the kind of person who agreed that narcotics should hardly ever be used, and that lots of people overprescribed them and overused them. I'm not a drug addict, do not use illegal drugs, nor do I smoke. On the rare occasions that I drink, I generally stop after one or two. However, the last several months have been life-altering for me in how I view these drugs. When I do not have an effective pain reliever to make living more bearable, I am not above going to a bar and having a couple of drinks. I've always heard it said that "alcohol masks the pain" and it does, just as vicodin does. The fact of the matter is that while certain medical conditions do have cures, there is no cure for fibromyalgia. I have begun treatment regimens but it's slow going and much harder to do when I'm in constant pain.
Finding doctors who are familiar with fibro and understand--REALLY understand--the depth of the pain is hard. I frequently find myself thinking of ways to die on days when the pain drags on and on. I don't think most people understand the frustration of that feeling, the desperation that one feels to just rid oneself of the pain. Anything--even death--sounds better than continuing in a life that is painful and has stolen your body, your livelihood, even your mind. There's a condition called "fibro fog" that is common for fibro patients. Between the depression, anxiety, and pain, it's often difficult to think clearly. The exhaustion that goes along with the illness makes it hard as well.
I have, at least temporarily, lost my livelihood because of this illness. I have lost time with my children as well as their respect and admiration. I have lost huge parts of myself to an illness that nobody understands. And I'm about to fall asleep writing. It's 1:24 p.m., and I can't go another minute without sleep. Damn this illness. Damn it to hell.
Subscribe to:
Posts (Atom)